As Americans consider whether to take advice from federal health officials and get an updated covid vaccine, Florida Gov. Ron DeSantis is drumming the message that ignited his national political career: Ignore what the federal government tells you about covid-19.

Last week — as polling showed him running a distant second to Donald Trump for the Republican presidential nomination — DeSantis convened a virtual roundtable featuring a panel of covid vaccine skeptics. Their mission: to swat away the FDA’s findings that the new shots are safe and effective for those 6 months and older.

Instead, they advised those younger than 65 not to get vaccinated, suggesting without evidence that the shots could be harmful.

“I will not stand by and let the FDA and CDC use healthy Floridians as guinea pigs for new booster shots that have not been proven to be safe or effective,” said DeSantis, contradicting the FDA’s findings. “Once again, Florida is the first state in the nation to stand up and provide guidance based on truth, not Washington edicts.”

Backing up DeSantis was the handpicked keeper of his public health strategy: his state’s surgeon general, Joseph Ladapo.

“My judgment is that it’s not a good decision for young people and for people who are not at high risk at this point in the pandemic,” Ladapo said.

Ladapo has come under fire from public health experts since DeSantis tapped him for the role. He has been rebuked by federal health officials for promoting misinformation about covid and vaccines generally. And a report by the faculty of the University of Florida’s College of Medicine expressed “concern for research integrity violations” in a state health department study that suggested receiving an mRNA vaccine against covid increased the risk of death among young men.

Ladapo personally altered the study’s findings, Politico reported. And research has shown the risk of cardiac complications among young men is up to 5.6 times as high after covid infection as after covid vaccination.

With public health officials facing an uphill battle to persuade Americans to get one of the updated vaccines — just 17% received the 2022 booster — DeSantis’ tactic could further depress uptake by stoking doubts about the vaccines.

DeSantis is “playing with fire, and this is about life and death,” said Donna Shalala, who served as U.S. Health and Human Services secretary during the Clinton administration and later represented Florida in Congress.

“But I think people will see it for what it is: a desperate attempt at very high risk to people in Florida to reposition himself,” she said.

DeSantis trails Trump by more than 40 points, on average, in polls of GOP primary voters, a gap that has widened despite the governor’s recent efforts to reboot his campaign.

More than 90,000 people in Florida have died from covid-19.

And, while there have been a few serious side effects associated with covid vaccines, their incidence is rare and several studies have shown that vaccinated people are at no greater risk of death from non-covid causes than those who are unvaccinated. More than 600 million doses of covid vaccines have been administered in the U.S., according to Our World in Data.

That information was not mentioned in the discussion last week, when the panel — which notably included no vaccine or infectious disease experts — said without evidence that the shots might have “negative efficacy” or even cause increased infection from the virus.

DeSantis and Ladapo said they were troubled by the lack of human trials before the latest covid vaccines were authorized — though they did not address why they might be less concerned about the risks for those age 65 and older.

Annual flu vaccines also do not undergo clinical testing on humans. But Ladapo called it “sleight of hand” to compare the covid boosters to the flu vaccine, because it has been around for decades. “It is a completely different phenomenon,” he said.

The Florida Health Department did not respond to questions about whether it recommends the flu vaccine in light of its dearth of human testing.

Daniel Salmon, a vaccine expert at Johns Hopkins University who watched the roundtable, said he took issue with the claim that there wasn’t clinical data supporting the new vaccines’ safe use. Like the flu vaccine, the primary covid vaccines went through clinical trials, and there wouldn’t be time to conduct one every time a new strain emerges, he said.

The discussion was not a robust debate around scientific uncertainty among experts, Salmon said. He noted the panelists’ lack of expertise and training in vaccines and infectious disease, saying they instead leaned on their positions as physicians, academics, and the Florida surgeon general to give them credibility.

“They don’t know covid,” Salmon said. “They’re cherry-picking facts to defend their position. And they don’t have the expertise to make those decisions for a large number of people.”

“It felt to me like they were trying to sow doubt,” he said, “and that’s dangerous.”

Polling by the nonprofit health organization KFF shows that most Americans encounter health misinformation, and many are uncertain about the veracity of claims about the covid vaccines.

DeSantis built his national reputation on bucking the medical establishment and ending 2020’s pandemic lockdown earlier in Florida than many other states did. He also has gained a following — and raised money — by criticizing the federal government under President Joe Biden and guidance from the nation’s former top infectious disease expert, Anthony Fauci, who left his post at the National Institutes of Health in December.

DeSantis’ handling of the covid response helped propel him to a massive reelection victory last year and to the front of the pack of 2024 Republican presidential contenders this spring.

David Richards, chair of the International Relations and Political Science Department at Lynchburg University in Virginia, said he is not surprised by DeSantis’ approach to the updated vaccines given his polling numbers, his reputation for pushing “medical freedom,” and his general vaccine policies.

“He needs to remain relevant and set himself apart from other candidates,” he said.

Last year, DeSantis opposed providing covid vaccines to young children after Florida came under fire for being the only state not to preorder doses ahead of the federal government’s approval of vaccination for children under 5.

This year, DeSantis urged Florida’s GOP-controlled legislature to approve pandemic-related legislation that runs counter to some public health recommendations, including measures to permanently ban school mask mandates and bar businesses from firing employees who don’t get vaccinated.

Matt Dallek, a political historian at George Washington University in Washington, D.C., said DeSantis’ messaging on the new covid vaccines shows his desire to distance himself from Trump — even though Trump’s 2018 endorsement led to his winning the Florida governor’s race.

“This is a way for him to exploit the issue, though it may come at the expense of lives of anyone who would listen to him in Florida and elsewhere,” he said.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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The California Legislature passed a pair of bills greenlighting Gov. Gavin Newsom’s campaign to build 10,000 new beds and housing units and increase drug addiction treatment as part of his response to the state’s homelessness and drug crises. The Democratic governor is expected to sign the bills, which received bipartisan support.

The first bill, SB 326, is designed to transform the state’s Mental Health Services Act into the Behavioral Health Services Act, using an existing tax on millionaires to treat the most seriously mentally ill and to increase programs for substance use disorders. The second, AB 531, authorizes the state to issue $6.38 billion in bonds to build more housing for homeless people and treatment beds for those with the most severe needs.

Newsom will now ask voters to approve the changes on the March primary ballot.

“This reform will bring much needed accountability currently lacking at the local and state level, increased transparency and visibility into the whole mental health and addiction treatment system, and a modernized focus to address today’s crises,” Newsom said in a statement.

According to a June statewide study on homelessness by the University of California-San Francisco, more than 171,000 Californians experience homelessness daily, representing 30% of the nation’s homeless population. The majority of participants in the study reported high lifetime rates of mental health and substance use challenges; 82% reported a period in their life in which they experienced a serious mental health condition, and nearly two-thirds reported the use of illicit drugs or heavy drinking.

The mental health act was passed as Proposition 63 by voters in 2004 and levied a tax of 1% on income above $1 million, known as the “millionaire’s tax.” That money then flowed from the state to counties for use in five mental health areas, including community support, prevention, and facilities. Funding changes year to year, but the tax generated $3.3 billion in the 2022-23 fiscal year, according to the nonpartisan Legislative Analyst’s Office.

However, the program has been criticized over the years for falling short of its initial promise. Last year, the Los Angeles Times highlighted several reasons, including revenue swings, consistent underfunding of social and mental health programs, tension between state and county officials, and a shortage of mental health clinicians.

Newsom pledged that the newly renamed Behavioral Health Services Act would build 10,000 new beds and housing units for people experiencing homelessness who have behavioral health needs. It would also focus on diversifying the workforce and improving accountability — tracking outcomes in a more detailed way — so the government can understand what’s working and what’s not.

However, counties that administer this money at the local level have raised concerns. A letter from the California State Association of Counties and other organizations representing local government interests expressed fear that Newsom’s proposal would result in counties receiving significantly less funding for core services, little protection from fluctuation in funds, and less flexibility in spending.

The governor’s office emphasized that new requirements still provide flexibility.

Assembly member Jacqui Irwin (D-Thousand Oaks), who was the lead author of the bond bill and served for seven years as the chair of the body’s Military and Veterans Affairs Committee, is particularly proud of a provision that will reserve $1.07 billion for housing for veterans. California has the largest number of veterans experiencing homelessness — 31% of the nation’s homeless veteran population — according to a 2021 homelessness report by the U.S. Department of Housing and Urban Development.

“Getting veterans experiencing homelessness off the streets has long been a priority for California, but getting some of our most vulnerable veterans into needed treatment for behavioral health challenges will be transformative,” Irwin said.

Sen. Susan Talamantes Eggman (D-Stockton), who co-authored the bond bill and was the lead author of the other bill, said the bills are critical to the state’s continuum of care. “Together they will build out voluntary housing, reprioritize resources to those with the greatest needs, and provide a true safety net to prevent the many people falling through the cracks that we see today,” she said.

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Justina Worrell, 47, works part time as a kitchen helper in an Ohio nursing home. She has cerebral palsy, an intellectual disability, and a cardiac condition that required she get an artificial heart valve at age 20.

A year ago, she was earning $862 a month and receiving about $1,065 in monthly Social Security disability benefits when a letter arrived from the federal government. The Social Security Administration had been overpaying her, the letter said, and wanted money back.

Within 30 days, it said, she should mail the government a check or money order.

For $60,175.90.

“Social Security should be to help people, not to destroy them,” said Addie Arnold, Worrell’s aunt and caregiver.

The Social Security Administration is trying to reclaim billions of dollars from many of the nation’s poorest and most vulnerable — payments it sent them but now says they never should have received.

During the 2022 fiscal year, the agency clawed back $4.7 billion of overpayments, while another $21.6 billion remained outstanding, according to a report by SSA’s inspector general.

One consequence is a costly collection effort for the government and a potentially devastating ordeal for the beneficiary.

“We have an overpayment crisis on our hands,” said Rebecca Vallas, a senior fellow at the Century Foundation think tank.

“Overpayments push already struggling beneficiaries even deeper into poverty and hardship, which is directly counterproductive to the goals” of safety-net programs.

The Social Security Administration declined an interview request from KFF Health News and Cox Media Group and would field questions only submitted by email.

The agency declined to say how many people have been asked to repay overpayments.

“We do not report on the number of debtors,” spokesperson Nicole Tiggemann said in a statement.

The agency rejected a May 2022 Freedom of Information Act request for documentation of every overpayment notice sent over several years, and a March 2023 appeal is pending.

Jack Smalligan of the Urban Institute, who has done research on Social Security, estimated that millions of people have received notices saying the agency overpaid them.

Most are on disability, and many cannot afford to repay the government, Smalligan said.

Overpayments can result from Social Security making a mistake or from beneficiaries failing to comply with requirements, intentionally or otherwise. But much of the fault lies within the system — for example:

• Rules are complex and hard to follow.
• Limits on what beneficiaries can save or own have not been adjusted for inflation in decades.
• The Social Security Administration does not have adequate staffing to keep up with its workload, much of which is done by hand.
• The system has built-in lags in checking information such as beneficiaries’ income and relies heavily on data submitted by beneficiaries themselves.

That’s the picture that emerges from agency employees, advocates for the disabled, policy research, SSA publications, reports by the inspector general, records of individual cases, and interviews with more than a dozen people in five states who received repayment notices.

The Social Security Administration is required to be a good steward of the money entrusted to it. That means keeping overpayments to a minimum — and recovering them when they happen, the inspector general has written.

When the agency determines it has overpaid, SSA can ultimately reclaim money from beneficiaries by, for instance, reducing or stopping their monthly benefit payments, garnishing wages, and intercepting federal tax refunds.

The agency tracks its overpayments through quarterly “payment integrity scorecards.” In the most recent scorecard for one Social Security program, the agency said $265 million of overpayments in the 2022 fiscal year were “within the agency’s control.” In other words, the agency blamed itself.

“We were aware of information but failed to take action, or we took incorrect action when the recipient or third-party provided requested information,” the scorecard said.

A much larger source of overpayments in that program, the agency said, was that beneficiaries did not report information, such as changes in their wages or assets.

By the time the agency catches a mistake, years can pass. In the meantime, the beneficiary is likely to have spent the money, and the amount involved can grow to overwhelming proportions.

“We understand getting notice of an overpayment may be unsettling or unclear and we work with people to navigate the overpayment process,” Tiggemann, the agency spokesperson, said by email.

The agency’s payment accuracy is high, Tiggemann said, but given the volume of payments it issues — almost $1.2 trillion in the 2021 fiscal year — “even small error rates add up to substantial improper payment amounts.”

Tiggemann noted that the SSA is developing a program to tap payroll data from outside sources. The agency plans to use that information “when appropriate” to automatically adjust the amounts it pays beneficiaries, she said.

Congress authorized that project almost eight years ago.

Tangled Safety Nets

When people hear “Social Security,” they may think of retirement benefits — the monthly payments the government issues to millions of retired workers and surviving family members under the Old-Age and Survivors Insurance program.

But the Social Security Administration does much more than issue those checks, and its clawbacks for overpayment commonly involve payments under other programs with complicated eligibility requirements.

With certain benefits, how much money — if any — beneficiaries are due each month can change as their circumstances change.

Most of the overpayments involve the Supplemental Security Income program, which provides money to people with little or no income or other resources who are disabled, blind, or at least 65.

In the 2021 fiscal year, more than 7% of that program’s outlays were overpayments, according to the agency’s most recent annual financial report.

Some overpayments involve the Disability Insurance program, which assists disabled workers and their dependents.

Lori Cochran, a beneficiary disabled by multiple sclerosis, said she got tripped up by a life insurance policy she took over from her mother.

After she reviewed her finances with a Social Security representative, she recounted, she received a letter saying she owed $27,000.

“I started having, like, heart palpitations,” she recalled.

Cochran said she didn’t know the insurance policy had a cash value of $4,000.

The agency told her that, for every month she held the policy, she wasn’t entitled to any of her $914 monthly benefit, she said. The agency said it would recoup the $27,000 by deducting $91.40 from each of her future checks. At that rate, she would be paying it back “way into my elderly age,” she said.

Cochran has asked SSA to reconsider. In the meantime, she cashed out the life insurance policy — only to learn that, instead, she could have signed a paper saying she had no intention of cashing it out.

“So now I’m left with no life insurance,” she said. “When I die, my daughter will have no money to bury me.”

A ‘Kafkaesque Minefield’

If beneficiaries believe that an overpayment wasn’t their fault, that the claim is unfair, or that paying the money back would cause hardship, they can ask the SSA to waive repayment.

They can also negotiate to repay what they owe gradually.

Cheryl Bates-Harris of the National Disability Rights Network recommended that people who receive overpayment notices appeal, because the information in the notices may be inaccurate.

But trying to resolve an overpayment involves plunging into a “Kafkaesque minefield,” said Darcy Milburn, director of Social Security and health care policy at the Arc, which advocates for people with disabilities.

Another beneficiary named Lori described her journey through the minefield on the condition that her last name be withheld. She provided a copy of an administrative law judge’s ruling in her case.

In 2017, SSA informed her that, since 2000, she had been overpaid $126,612, according to the judge’s ruling.

“I almost threw up when I opened that letter,” she said. “Myself and my husband were like, we were like frantic.”

According to the judge’s ruling, the government based its calculation on her receipt of workers’ compensation benefits as well as disability benefits. She argued that she had told the SSA about the workers’ comp. Lori worked for the U.S. Postal Service until she injured her back.

As her struggle unfolded, the government reduced her monthly benefit checks and then stopped them. She and her husband sold their car and their house and moved from Florida to Georgia, where the cost of living was lower.

She said she ran up credit card debt and called lawyer after lawyer but was told no attorney would help because there was no money to be made from a Social Security case. Then she found one through legal aid.

After six years of battling SSA, including multiple appeals, Lori prevailed. An administrative judge ruled in her favor and wiped away the debt.

Lori had spent her benefit money in the belief she was entitled to it, the judge wrote, and “requiring repayment would be against equity and good conscience.”

A family in Covington, Georgia, had a similar experience.

In 2018, Matt Cooper was shot in the face while working as a police officer there. Since then, he and his wife, Kristen, have depended on Social Security payments to help support their two young children.

“Every decision that we made for our family was based on the benefits that we were supposed to receive,” Kristen Cooper said.

But the Social Security Administration recently demanded the family pay back $30,000 and reduced the children’s benefits. Cooper said the agency failed to correctly include her husband’s workers’ compensation in its calculations.

“Situations like this come up and it just brings back a level of anger and just the need to protect my family,” she said. “The system has definitely let us down.”

Too Late

Alex Hubbard, 30, has autism and said he works in a mailroom to keep busy.

“I like to be busy because I don’t want to be bored at home,” he said.

In 2019, Hubbard received an overpayment notice for $11,111.43.

“I’m supposed to report my wages, but I just don’t know how, how it works,” said the Seattle resident.

The agency has cut off his benefits, Hubbard said, but it would have been better if it had stopped them before he owed all that money.

“They should have let me know, like, years back that I owed back that much,” Hubbard said.

Now, the agency is trying to collect the money from his mother, who is unable to manage his benefits since having a stroke, Hubbard said.

Dealing with the Social Security Administration can be exasperating, beneficiaries said.

Letters from the agency don’t provide clear explanations, and, if people on the receiving end of overpayment notices can get through to a human, agency employees give inconsistent answers, beneficiaries said.

SSA employees interviewed for this article, speaking as union leaders, said they can relate.

Beneficiaries “struggle getting through to an agency that has all but become non-responsive to the public at this point due to understaffing,” said Jessica LaPointe, a claims specialist in SSA’s Madison, Wisconsin, field office and president of a union council representing Social Security employees.

Tiggemann, the agency spokesperson, cited the challenge of “staffing losses and resource constraints” in her written statement.

In a March 2023 budget message, SSA’s acting commissioner, Kilolo Kijakazi, said SSA was “rebuilding” its workforce after ending the 2022 fiscal year “at our lowest staffing level in over 25 years.”

New workers need a long time to get up to speed, employees said. Complex rules cause trouble for employees and beneficiaries alike.

Members of the public “often struggle to really understand what they’re supposed to report,” LaPointe said.

Rules for the Beneficiaries

Disability benefits are meant for people who can’t do a lot of work.

For disabled people who aren’t blind, the government generally draws a line at earning $1,470 or more per month.

It’s not just bank balances or paycheck amounts and the like that can affect a person’s benefits. In the SSI program, if a family member gives them meals or a place to stay, that can count as “in-kind support.”

Part of the trouble with SSI, critics say, is that limits on the assets that beneficiaries are allowed to hold without forfeiting benefits haven’t been adjusted since 1989. The asset limits stand at $2,000 for individuals and $3,000 for couples.

Had the asset limits been indexed for inflation since 1972, when the program was created, they would be almost five times as much as they are today, according to a July 2023 report by researchers at the Center on Budget and Policy Priorities.

Maintaining eligibility for SSI benefits leaves people with little money to fall back on — let alone to repay a large debt to the government.

A bipartisan group of lawmakers introduced a bill on Sept. 12 to raise the limits.

The SSDI and SSI programs include rules meant to encourage people to work. However, “if beneficiaries attempt work, they are likely to be confronted with an overpayment, and it is likely to be large,” Smalligan and Chantel Boyens of the Urban Institute said in a March 2023 report commissioned by the Social Security Advisory Board.

‘In a Very Bad Place’

Justina Worrell’s aunt and caregiver Addie Arnold, 69, who took her in when she was orphaned as a child, said neither of them has $60,175.90 to repay the government.

The August 2022 letter demanding repayment of that amount was not the first or the last word they have received from the Social Security Administration about possible payment errors. The matter involves two streams of benefits — one from the account of Worrell’s deceased father, and another related to her disability, Arnold said.

“I’ve been confused ever since this started,” she said.

A February 2023 letter from the SSA claiming to explain how “we paid her [Worrell] $7,723.40 too much in benefits” includes difficult-to-decipher data going back to 1996.

The SSA has dropped its claim on some of the more than $60,000 it sought a year ago, but most remains outstanding, Arnold said.

Arnold believes part of the problem is that Worrell’s employer asked her to work additional hours at the nursing home, where she runs a dishwasher and carries trays.

“She is so afraid of losing her job that she will do whatever they ask her to do. That is part of her mental state,” Arnold wrote in a letter appealing to the Social Security Administration.

“I truly do hope and pray that she is allowed to stay on SSI,” Arnold wrote, “because she has to continue to live and without it she will be in a very bad place.”

Reporters contributing to this investigation: Josh Wade, Cox Media Group; Justin Gray, WSB-TV, Atlanta; John Bedell, WHIO-TV, Dayton, Ohio; Shannon Butler, WFTV-TV, Orlando, Florida; Amy Hudak, WPXI-TV, Pittsburgh; Jesse Jones, KIRO-TV, Seattle; Ted Daniel, WFXT-TV, Boston; Madison Carter, WSOC-TV, Charlotte, North Carolina; Ben Becker, WJAX-TV, Jacksonville, Florida

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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When she was around 22 weeks pregnant, the patient found out that the son she was carrying didn’t have kidneys and his lungs wouldn’t develop. If he survived the birth, he would struggle to breathe and die within hours.

The patient had a crushing decision to make: continue the pregnancy — which could be a risk to her health and her ability to have children in the future — or have an abortion.

“I don’t think I stopped crying for an entire two weeks,” she said. “The whole world felt heavy. … It’s not something anybody should have to go through. It’s not easy losing somebody you love.”

KFF Health News is not disclosing the woman’s name or the name of the community where she lives, because she fears harm if her identity becomes known. She lives in Missouri, which has one of the strictest abortion bans in the nation. KFF Health News confirmed details of her experience.

After the fetal diagnosis, the patient’s Missouri doctors told her that her life wasn’t in immediate danger, but they also pointed out the risks of carrying the pregnancy to term. And in her family, there’s a history of hemorrhaging while giving birth. If she started to bleed, her doctors said, she might lose her uterus, too. The patient said this possibility was devastating. She’s a young mom who wants more children.

So she chose to get an abortion. Her Missouri doctors told her it was the safest option — but they wouldn’t provide one.

The patient had to leave Missouri and cross the border to Illinois, which has become a legal haven for abortion rights. Because of her complicated pregnancy, she received the abortion in a hospital.

Since the Dobbs decision overturned Roe v. Wade on June 24, 2022, determining who can get an abortion and where has been complicated by medically ambiguous language in new state laws that ban or restrict abortion. Doctors in those states fear they could lose their medical licenses or wind up in jail.

Amid these changes, physicians in abortion havens such as Illinois are stepping up to fill the void and provide care to as many patients as possible.

But getting each medically complex patient connected to a doctor and a hospital has been logistically complicated. In response to the growing demand, Illinois Gov. JB Pritzker, a Democrat, recently launched a state program with a goal to get patients who show up at clinics, yet need a higher level of abortion care, connected more quickly with Illinois hospitals. Providers will call a hotline to reach nurses who will handle the logistics.

There is little concrete data on how many more patients are traveling to other states for abortions at hospitals. The Centers for Disease Control and Prevention tracks some abortion data regarding out-of-state patients but doesn’t collect it based on the type of facility they’re performed in.

Hospitals are a “black box” for abortion-related data, according to Rachel Jones, a longtime researcher at the nonprofit Guttmacher Institute.

Even before Roe fell, it was hard to wade through the hospital bureaucracy to understand more comprehensively how abortion care was provided, Jones said. Guttmacher has tracked hospital-based abortions in the past but doesn’t have updated figures since Dobbs.

#WeCount, widely considered a reliable tracker of shifts in abortion care over the past year, doesn’t break out hospital data separately. #WeCount co-chair Ushma Upadhyay said the data would have gaps anyway. She said it’s been difficult to get providers in banned states to report what’s happening.

The Uncertainties Behind Life Exceptions

All 15 states that ban abortions do allow exceptions to save the life of the pregnant person, according to tracking from the health policy nonprofit KFF. But exactly when the person’s life is considered at risk is open to interpretation.

“It’s very, very difficult to get an exception,” said Alina Salganicoff, director of women’s health policy at KFF. “It’s like, ‘How imminent is this threat?’ And in many cases, patients can’t wait until they’re about to die before they get an abortion.”

The latest ban — in Indiana — took effect at the end of August.

In 2020, when Roe was still the law of the land, only 3% of abortions typically occurred in hospitals. Now, OB-GYNs in Chicago and other places across the U.S. that protect abortion rights say out-of-state patients are increasingly showing up to get abortion care at hospitals.

Those more complex procedures and hospital stays often bring higher medical bills. More patients now need help covering the expensive price tag of the procedures, according to medical providers and abortion funds that provide financial assistance.

The patient from Missouri made her way to Laura Laursen, an OB-GYN at Rush University Medical Center in Chicago, in May. The number of out-of-state abortions at Rush has quadrupled since Roe was overturned, Laursen said.

Laursen received the patient’s consent to discuss her case with NPR and KFF Health News. She recalled the patient was frustrated about having to jump through so many hoops to get the abortion, and stressed about the cost of being in a hospital.

“The biggest thing was just making space for her to express those emotions,” Laursen said. “Making sure that she felt comfortable with all the decisions she was making. And trying to make her feel as empowered as possible.”

The patient’s life wasn’t immediately threatened, but it was safer for her to have an abortion than remain pregnant, Laursen said.

“I’m constantly hearing stories from my partners across the country of trying to figure out what counts as imminent danger,” Laursen said. “We’re trying to prevent danger. We’re not trying to get to the point where someone’s an emergency.”

Sending Patients Over State Lines for Care

Jennifer McIntosh is an OB-GYN in Milwaukee who specializes in high-risk patients. Because of Wisconsin’s abortion ban, she’s referring more patients out of state.

“It’s really awful,” McIntosh said, recalling difficult conversations with patients who wanted to be pregnant, but whose babies faced dire outcomes.

She would tell them: “Yes, it’s very reasonable to get an abortion. But oh, by the way, it’s illegal in your own state. So now on top of this terrible news, I’m going to tell you that you have to figure out how to leave the state to get an abortion.”

In some cases, McIntosh can provide an abortion if the medical risk is significant enough to satisfy Wisconsin’s life-of-the-mother exception. But it feels legally risky, she said.

“Am I worried that someone might think that it doesn’t satisfy that?” McIntosh said. “Absolutely, that terrifies me.”

Jonah Fleisher‘s phone is often ringing and buzzing with texts. An OB-GYN who specializes in abortion and contraception at the University of Illinois health system, near Rush hospital in Chicago, Fleisher is frequently asked to see how quickly he can squeeze in another patient from another state.

Since Roe fell, Fleisher estimated, the health system is treating at least three times as many patients who are traveling from other states for abortion care.

He worries about the “invisible” patients who live in states with abortion bans and never make it to his hospital. They may have medical problems that complicate their pregnancies yet don’t know how to navigate the logistics required to make their way over state lines to his exam room, or don’t have the financial resources.

“I know that some number of those women are not going to make it through birth and postpartum,” Fleisher said. “More than the stress of somebody who’s actually making it to see me, that’s the thing that causes me more stress.”

Medical costs, in addition to travel, are a big obstacle for high-risk patients seeking abortion care at hospitals. The patient from Missouri owed around $6,000 for her hospital stay, Laursen said. Her bill was covered by local and national abortion funds. Some hospital bills can reach into the tens of thousands of dollars for more complicated procedures, according to the funds.

The Chicago Abortion Fund pledged to cover just over $440,000 in hospital bills for 224 patients in the year following Dobbs, according to Meghan Daniel, CAF’s director of services. Those bills were primarily for out-of-state patients. By comparison, in the year that preceded Dobbs, CAF helped cover just over $11,000 for 27 patients.

This increase in patients needing financial help for out-of-state abortion care is happening across the nation.

In many cases, patients have a hard time accessing abortion care, and the delays push them further into their pregnancies until they need to have the procedure in a hospital, said Melissa Fowler, chief program officer at the National Abortion Federation. And that costs much more.

“We’re seeing more cases right now [of] people who are later in gestation,” Fowler said. “More adolescents who are later in gestation, who are showing up at hospitals because this is really their last resort. They’ve been referred all over.”

All of this raises questions about how long these funds can afford to help.

“The current financial way in which people are paying for their abortions I fear is not sustainable,” Fleisher said.

Nonprofit hospitals could help. In return for getting tax breaks, they have financial assistance policies for people who are uninsured or can’t afford their medical bills. But the policy at UI Health in Chicago, for example, covers only Illinois residents. UI Health spokesperson Jackie Carey said that for other patients, including those who live in other states, the hospital offers discounts if they don’t have insurance, or if their insurance won’t pay.

Laursen argues out-of-state Medicaid plans and insurance companies should be picking up the tab.

“Whose responsibility is this?” she asked.

Not Ready to Let Go

Back in Missouri, the patient has a special room dedicated to her son. She brought home a recording of his heartbeat and keeps his remains in a heart-shaped casket. She talks to her son, tells him how much she loves him.

“I’m just not ready to let him go,” the patient said. “Even though they’re not here on Earth anymore, you still see them in your dreams.”

She’s working on healing emotionally and physically. And while she’s thankful that she was able to travel to Illinois for care, the experience made her angry with her home state.

“There’s a lot of good people out there who go through a lot of unfortunate situations like me who need abortion care,” the patient said. “To have that taken away by the government, it just doesn’t feel right.”

This article is from a partnership that includes WBEZ, NPR, and KFF Health News.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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When her 9-year-old daughter was having trouble breathing, Yvette Hammonds took her to a local emergency room. It quickly became clear that girl needed to be transferred to the children’s hospital about 40 minutes away in Atlanta, so her daughter was loaded into an ambulance.

Months later, Hammonds received a bill for nearly $1,000: the cost of the ground ambulance ride from one in-network hospital to another.

In this installment of InvestigateTV and KFF Health News’ “Costly Care” series, Caresse Jackman, InvestigateTV’s national consumer investigative reporter, probes the lack of cost protections for patients who find themselves needing an ambulance ride to care.

Jackman’s story features an interview with Elisabeth Rosenthal, KFF Health News’ senior contributing editor. “When you need an ambulance, you need an ambulance,” Rosenthal said. “And that’s the worst time in your life to be a consumer, when you have no choice.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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This story can be republished for free (details).

DENVER. — A Kayce Atencio solía atormentarlo un pensamiento mientras trabajaba en un refugio para personas sin hogar en el centro de Denver. “Podría haber sido yo”, dijo Atencio, de 30 años, quien vive con su hijo y su hija en un pequeño apartamento, no muy lejos del refugio.

Casi lo fue. Atencio y sus hijos durmieron durante años en los sofás de amigos o en casa de familiares, sin poder alquilar un apartamento debido a su mal historial de crédito. Una de las principales razones, dijo, fue la deuda médica.

Atencio sufrió un ataque al corazón a los 19 años, desencadenado por una afección congénita no diagnosticada. Las deudas por su atención devastaron su crédito. “Siempre sentí que no podía salir adelante”, dijo, recordando una vida de trabajos sin futuro y préstamos con intereses altos mientras trataba de mantenerse al día con los cobradores de deudas.

A los 25 años, tuvo que declararse en quiebra.

En todo el país, la deuda médica obliga a legiones de estadounidenses a hacer sacrificios dolorosos. Muchos recortan gastos en alimentos, asumen trabajos adicionales o agotan sus ahorros para la jubilación. Para millones como Atencio, el sistema de atención médica amenaza sus propios hogares.

Esto ha resultado ser especialmente devastador en comunidades como Denver, donde los precios de las viviendas se han disparado, volviéndose inaccesibles para muchos residentes, alimentando una crisis que ha dejado a miles de personas sin hogar y durmiendo en las calles.

En Community Economic Defense Project, o CEDP, una organización sin fines de lucro de Denver que ayuda a las personas que enfrentan el desalojo o la ejecución hipotecaria de sus hogares, aproximadamente dos tercios de los clientes tienen deuda médica, según una encuesta informal realizada por KFF Health News y la organización.

Cerca de la mitad de las casi 70 personas encuestadas dijeron que la deuda médica desempeñó un papel en su problema de vivienda, y aproximadamente una de cada 6 dijo que fue un factor importante.

“Todo el día escucho sobre la deuda médica”, dijo Kaylee Mazza, defensora de inquilinos que trabaja en una clínica legal de CEDP en el tribunal de Denver que ofrece ayuda a los inquilinos que enfrentan procesos de desalojo. “Está en todas partes”.

A nivel nacional, alrededor de 100 millones de personas tienen alguna forma de deuda de atención médica. De ellos, aproximadamente una de cada 5 dijo que las deudas los obligaron a cambiar su situación de vida, incluyendo mudarse con amigos o familiares, según una encuesta de KFF de 2022.

Un creciente cuerpo de investigaciones muestra que la vivienda estable es fundamental para el bienestar físico y mental. Algunos sistemas médicos importantes, incluyendo varios en Colorado, incluso han comenzado a invertir en viviendas asequibles en sus comunidades, citando la necesidad de abordar los llamados determinantes sociales de salud.

Pero a medida que los hospitales y otros proveedores médicos dejan a millones en deuda, socavan inadvertidamente la salud de la comunidad, dijo Brian Klausner, médico en una clínica que atiende a pacientes sin hogar en Raleigh, Carolina del Norte.

“Muchos de los hospitales en todo el país que ahora públicamente se comprometen a abordar las inequidades en salud y eliminar las barreras para la salud están contribuyendo simultáneamente a crear estos mismos problemas”, dijo Klausner. “A nadie le gusta el elefante en la habitación, pero la realidad es que hay miles de estadounidenses enfermos que probablemente están sin hogar, y enfermos, debido a la deuda médica”.

Efecto dominó

La deuda médica puede socavar la seguridad de la vivienda de varias maneras. Para algunos, debilita su crédito, lo que dificulta alquilar o solicitar una hipoteca. El año pasado, aproximadamente uno de cada 8 consumidores estadounidenses con un informe de crédito tenía una deuda médica en él, según el Urban Institute, una organización sin fines de lucro.

Los pacientes con condiciones médicas crónicas pueden atrasarse en el pago del alquiler o de las cuotas de su hogar mientras luchan por mantener bajo control las deudas médicas para preservar el acceso a la atención médica. KFF Health News encontró que muchos hospitales y otros proveedores rechazan a pacientes con cuentas pendientes.

Denise Beasley, quien también ayuda a clientes en CEDP en Denver, dijo que muchas personas mayores, que normalmente dependen más de los médicos y los medicamentos, creen que deben pagar sus cuentas médicas y de farmacia antes que cualquier otra cosa. “Están aterrados”, dijo.

Para otros, esta deuda puede aumentar las dificultades financieras provocadas por un accidente o una enfermedad inesperada que los obliga a dejar de trabajar, poniendo en peligro su cobertura de salud o su capacidad para pagar la vivienda.

En Seattle, los investigadores encontraron una deuda médica generalizada entre los residentes de campamentos de personas sin hogar. Y aquellos con este tipo de deudas tendían a experimentar la falta de vivienda durante dos años más que los residentes de campamentos sin deuda.

En términos más generales, las personas con deuda médica tienen más probabilidades de decir que la deuda les ha impedido rentar o avanzar con una hipoteca, en comparación con las personas que tienen préstamos estudiantiles o de tarjetas de crédito, según una encuesta nacional de 2019 realizada por la empresa de bienes raíces Zillow entre inquilinos, compradores de viviendas y dueños de propiedades.

Para Atencio, quien dejó su hogar a los 16 años, sus problemas con la deuda médica comenzaron con el ataque al corazón. Estaba trabajando en una gasolinera y viviendo en Trinidad, una pequeña ciudad en el sur de Colorado cerca de la frontera con Nuevo México.

Fue llevado de urgencia a un hospital local, donde fue sometido a una cirugía. Las facturas, que superaban los $50,000, no estaban cubiertas por su plan de salud porque había acudido a un proveedor fuera de la red sin saberlo, contó. “Luché lo más que pude, pero no podía pagar un abogado. Estaba atrapado”.

Atencio, quien es transgénero, tiene el pelo oscuro corto y un gran tatuaje en su antebrazo derecho en memoria de dos amigos que murieron en un accidente automovilístico. Sentado en un sofá viejo en un apartamento con rejas en las ventanas, es filosófico acerca de su largo periplo desde esa crisis médica a través de años de deuda e inseguridad de vivienda. “Hemos salido adelante”, dijo. “Pero tuvo un costo”.

Cuando su crédito bajó a cerca de 300, la calificación más baja, había pocos lugares a los que recurrir en busca de ayuda. La relación de Atencio con sus padres, quienes se divorciaron cuando él tenía 2 años, había sido tensa durante años. Atencio se casó a los 18, pero él y su esposo rara vez tenían suficiente para llegar a fin de mes. “Recuerdo pensar, ‘¿Qué tipo de comienzo de mi vida adulta es este?'”.

Finalmente, fueron acogidos por la madre de su esposo. “Si no fuera por ella, habríamos estado sin hogar”, dijo. Pero salir de la deuda fue agonizante.

“Terminas en este ciclo”, dijo. “Te endeudas. Luego tomas préstamos para tratar de pagar parte de la deuda. Pero luego está todo ese interés”. Con un mal historial de crédito, Atencio en ocasiones dependía de prestamistas a los que hay que devolver el dinero pronto, cuyas altas tasas de interés pueden aumentar drásticamente lo que deben los prestatarios.

Además, muchos empleadores también verifican los puntajes de crédito, lo que dificultaba que Atencio encontrara algo más que trabajos mal remunerados.

El trabajo en el refugio fue un paso adelante, y este año Atencio obtuvo el apartamento, que está reservado para familias monoparentales en riesgo de quedarse sin hogar. (Atencio se separó de su esposo el año pasado).

Desafíos de vivienda en Colorado

Las luchas de vivienda de Atencio están lejos de ser únicas. Jim y Cindy Powers, quienes viven en Greeley, una pequeña ciudad al norte de Denver, vieron colapsar sus propios sueños de vivienda después de que a Cindy se le diagnosticara una afección potencialmente mortal que requirió múltiples cirugías y dejó a la pareja con más de $250,000 en deuda médica.

Cuando los Powers se declararon en quiebra, el acuerdo protegió su hogar. Pero su hipoteca fue vendida y el nuevo prestamista rechazó el plan de pago. Perdieron la casa.

Lindsey Vance, de 40 años, quien se mudó a Denver hace cinco años en busca de viviendas más asequibles que en el área de Washington, DC, de donde es originaria, aún no puede comprar una casa debido a deudas médicas. Ella y su esposo tienen un ingreso de seis cifras, pero las facturas médicas por incluso atención de rutina que ha luchado por pagar desde sus 20 años han afectado su crédito, dificultando la obtención de un préstamo. “Estamos atrapados en un punto muerto”, dijo.

En Denver y sus alrededores, funcionarios electos, líderes empresariales y otros se han mostrado cada vez más preocupados por la deuda médica mientras buscan formas de abordar lo que muchos ven como una crisis de vivienda.

“Son cosas profundamente conectadas”, dijo Sarah Parady, miembro del Concejo Municipal de Denver. “A medida que los precios de la vivienda han subido y subido, he visto a más y más personas, especialmente personas con problemas médicos y deudas, perder la seguridad en la vivienda”.

Parady, quien se postuló para el cargo el año pasado para abordar la asequibilidad de la vivienda, está liderando un esfuerzo para que la ciudad compre y cancele la deuda médica de los residentes de la ciudad.

Impulsado por los precios disparados y las tasas de interés en aumento, el costo de comprar una vivienda en Denver se más que duplicó desde 2015 hasta 2022, según un análisis reciente. Y con los alquileres también aumentando, los desalojos están en alza luego del paréntesis de los dos primeros años de la pandemia.

Tal vez en ningún lugar la crisis de Denver es más visible que en las calles. El centro de la ciudad está lleno de tiendas de campaña y campamentos, incluido uno que se extiende por varias cuadras cerca del refugio y la clínica donde Atencio solía trabajar. Según un conteo, la población sin hogar del área metropolitana de Denver aumentó casi un 50% desde 2020 hasta 2023.

CEDP, que fue fundado para ayudar a los residentes con desafíos de vivienda desencadenados por la pandemia, se unió este año a otros defensores de consumidores y pacientes de Colorado para presionar a la legislatura en busca de protecciones más sólidas para los pacientes con deuda médica.

Y en junio, Colorado promulgó una ley pionera que prohíbe que la deuda médica se incluya en los informes de crédito de los residentes o se tenga en cuenta en sus puntajes crediticios, una medida que colocó al estado a la vanguardia de los esfuerzos a nivel nacional para ampliar las protecciones contra las deuda para los pacientes.

Algunos otros estados están considerando medidas similares. Y en Washington, DC, defensores de consumidores y pacientes están presionando para que se tomen medidas federales para limitar las facturas médicas en los informes de crédito. En la mayoría de los estados, incluyendo muchos con las tasas más altas de deuda médica, los pacientes aún no tienen tales protecciones.

Por su parte, Atencio espera que el nuevo apartamento marque un punto de inflexión.

El hogar es modesto, una pequeña unidad en una vieja torre de concreto. Hay un guardia de seguridad en la puerta principal y pasillos largos pintados de azul y marrón institucional.

La familia de Atencio se está instalando, junto con cuatro ratas mascotas: Stitch, Cheese, Peach y Bubbles, que viven en una jaula grande en la sala de estar. “Esto se siente como libertad”, dijo Atencio.

Ha tratado de darles a sus hijos, de 5 y 11 años, una sensación de seguridad: comidas caseras y espacio para jugar o pasar el rato en sus propios dormitorios. Como todos los padres, se preocupa por el tiempo que pasan frente a las pantallas y frunce el ceño cuando critican lo que hay para cenar. (No les gustaron las papas que puso en un asado al horno).

Todos son estudiantes a tiempo completo: Atencio, que dejó su trabajo en el refugio, está cursando una maestría en trabajo social. Su hijo acaba de empezar el jardín de infantes y su hija está en la escuela media. “Tengo grandes planes y grandes objetivos”, dijo.

Y con varios miles de dólares de deuda médica aún por pagar, agregó que tiene cuidado de no llevar a sus hijos a un hospital o médico fuera de la red. “No cometeré ese error de nuevo”, dijo.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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KALISPELL, Mont. — Inside the white-brick hallways of the Flathead County Detention Center, Jail Commander Jen Root walked up to a steel door with a small window and pointed inside.

“She’s been here almost a year, just laying on her bed,” she said.

Inside the cell, dimly lit by a single window, a woman was curled up under a fleece blanket, only her bright-pink fingernails sticking out.

This woman was charged with burglary in September 2022, Root said. An evaluation after her arrest determined that mental illness prevented her from standing trial and that she required treatment at the Montana State Hospital, the state-run inpatient psychiatric hospital.

Like many inmates deemed unfit for trial due to a mental health condition, she has been stuck on a waiting list for the Montana State Hospital’s 54-bed forensic unit, which stabilizes inmates through medication and treatment so they are competent to stand trial. The woman in the Kalispell jail was No. 2 on the unit’s waiting list of 70 people as of June 30. Meanwhile, the northwestern Montana jail where she’s waiting isn’t equipped to treat mental illness, and the jail staff can’t force her to take medication.

“So, they just deteriorate within our facility,” Root said of her and other inmates with mental health conditions.

Before their legal case can proceed, people charged with crimes in Montana must understand the charges they face and participate in their own defense. But because of bottlenecks in services across the country, people in jail with serious mental illness are waiting months to receive the care needed to “restore” their competency to stand trial.

The Montana State Hospital for years has struggled to keep up with the number of people who are criminally committed to the facility, but Root said the number of such people at the Flathead County jail has grown since the pandemic and as Montana’s recent population boom has pushed up housing costs.

This year, state lawmakers began to address the woes of the troubled state hospital, which lost its federal funding and accreditation in 2022 amid a rash of patient deaths, by creating a $300 million fund to improve behavioral health care in the state and passing bills to increase transparency.

Now, state health officials are asking lawmakers to change criminal commitment laws so the Montana Department of Public Health and Human Services has a say before a judge orders a patient committed to the Montana State Hospital or another state-run facility.

“That is something we would like to address with you,” Chad Parker, an attorney for the health department, told the Children, Families, Health, and Human Services Interim Committee in July. “That is something we’d like to look at to try and change, to give the department some more control, to at least give us a place at the table.”

But Republican Rep. Jennifer Carlson, a member of the interim committee, said that there is nowhere else to send patients facing criminal charges for evaluation and treatment, and that the health department should focus on improving patient care instead of denying patients access.

Parker said judges rarely order patients to be committed at community care facilities as an alternative to the state hospital system, though he acknowledged that community service options have dwindled, in part due to low Medicaid reimbursement rates. Lawmakers raised those rates by about 20% this year, but it will take time to determine whether that increase is enough to rebuild mental health services that have shuttered.

In the meantime, patients are funneled to the state hospital as it’s the only option for many inmates who need mental health care.

“When there are no available patient beds or they are not available for some time, the department can be held in contempt or receive another sanction,” Parker told the legislative committee. “And we need to address that, as well.”

In an emailed statement, health department spokesperson Jon Ebelt said that state law doesn’t require courts to consider wait times before committing inmates to the state hospital for mental health care. Neither Ebelt nor Parker pointed to specific community services or other mental health facilities that could treat inmates in the criminal justice system to become fit to stand criminal trial.

Interim legislative committees study issues during the Montana Legislature’s off years (it is in session only in odd-numbered years), and can draft bills for the next session, scheduled to start in January 2025. During their July meeting, lawmakers on the Children, Families, Health, and Human Services Interim Committee decided to explore what community mental health services are available but did not commit to drafting the legislation sought by the health department. The committee next meets on Sept. 12.

In an interview with KFF Health News and Montana Public Radio, Kalispell District Court Judge Amy Eddy did not address the health department’s proposal to give the state a say on involuntary commitments. But she noted that the state hospital is currently the only facility in the state that can take patients charged with crimes and involuntarily medicate them.

Involuntarily medicating inmates found to be mentally unfit is often the only way to stabilize them so they can stand trial and then be transferred to community services to help them maintain the mental stability that the medications can provide, according to experts in Montana’s judicial and mental health systems.

“It’s not realistic to change the commitment laws and keep people out of Montana State Hospital” unless other tools are developed, said National Alliance on Mental Illness of Montana executive director Matt Kuntz, who has worked in the past with lawmakers on changes to commitment laws.

However, Republican Rep. Bob Keenan said Montana’s commitment laws do need to be reexamined if the state is to rebuild its struggling behavioral health treatment system and reduce wait times for services in the state hospital.

Keenan requested that another committee, the Law and Justice Interim Committee, also study the commitment laws. But Keenan did not request any specific changes, and that committee had not responded to his letter as of Aug. 30.

“Montana has strictness when it comes to forced medication in mental health situations,” Keenan said. “That is something that needs to be looked at.”

Montana guarantees the right to a court hearing before people can be forced to take medication. That could be a hurdle to expanding the types of mental health facilities that can involuntarily medicate patients, particularly among those that can hold patients for only a few days, said Keenan.

The $300 million state lawmakers appropriated this year aims to fund both community-based mental health services and regional mental health facilities that could take on patients who need a lower level of care than what’s offered at the state hospital. But it will take years for any of those initiatives to come to fruition.

While additional mental health services are needed, the state also needs to work on improving care at the state hospital for the patients it does serve, said Eddy, the Kalispell judge.

Eddy said once inmates make it to the state hospital for treatment, they’re typically there for two weeks, instead of the allotted 90 days, before being sent back to the county jails. That makes it difficult to truly stabilize them, she said.

Many inmates refuse to take medication once they return to jail to await their legal proceedings, then they mentally deteriorate, according to Eddy and Root, the jail official. The jails also might be unaware of an inmate’s diagnosis or whether they’re on medication, Eddy said.

“That makes it very difficult, having gone through all this effort to restore this person’s fitness, to then keep them fit to proceed in the criminal stuff,” she said.

Some inmates are left waiting once again in jail only to go back through the process to get treatment at the state hospital.

“Then sometimes they’ve been here for so long, I think nobody knows what to do, and then they get released,” said Root.

With limited community mental health resources, those who are released typically end up back in jail, only to repeat the cycle.

“Probably my biggest frustration with our system is the mentally ill and having people in here that should not be criminally charged,” Root said. “Yes, they’re not safe to be out in the public, but being in jail is not the answer either.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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DENVER — Kayce Atencio used to be haunted by a thought while working at a homeless shelter in downtown Denver. “It could have been me,” said Atencio, 30, who lives in a small apartment with his son and daughter not far from the shelter.

It nearly was. Atencio and his children for years slept on friends’ couches or stayed with family, unable to rent an apartment because of poor credit. A big reason, he said, was medical debt.

Atencio had a heart attack at 19, triggered by an undiagnosed congenital condition. The debts from his care devastated his credit score. “It always felt like I just couldn’t get a leg up,” he said, recalling a life of dead-end jobs and high-interest loans as he tried to stay ahead of debt collectors. By 25, he’d declared bankruptcy.

Across the country, medical debt forces legions of Americans to make painful sacrifices. Many cut back on food, take on extra work, or drain retirement savings. For millions like Atencio, the health care system is threatening their very homes.

That’s proven particularly devastating in communities like Denver, where skyrocketing prices have put housing out of reach for many residents and fueled a crisis that’s left thousands homeless and sleeping on the streets.

At the Community Economic Defense Project, or CEDP, a Denver nonprofit that helps people facing eviction or home foreclosure, about two-thirds of clients have medical debt, an informal survey by KFF Health News and the organization suggests. Close to half of the nearly 70 people surveyed said medical debt played a role in their housing issue, with about 1 in 6 saying it was a major factor.

“All day long I hear about medical debt,” said Kaylee Mazza, a tenant advocate who staffs a CEDP legal clinic at the Denver courthouse that offers aid to tenants going through eviction proceedings. “It’s everywhere.”

Nationwide, about 100 million people have some form of health care debt. Of those, about 1 in 5 said the debts have forced them to change their living situation, including moving in with friends or family, according to a 2022 KFF poll.

A growing body of evidence shows that stable housing is critical to physical and mental well-being. Some major medical systems — including several in Colorado — have even begun investing in affordable housing in their communities, citing the need to address what are sometimes called social determinants of health.

But as hospitals and other medical providers leave millions in debt, they inadvertently undermine community health, said Brian Klausner, a physician at a clinic serving homeless patients in Raleigh, North Carolina.

“Many of the hospitals across the country that are now publicly vowing to address health inequities and break down barriers to health are simultaneously helping to create these very problems,” Klausner said. “Nobody likes the elephant in the room, but the reality is that there are thousands of sick Americans who are likely homeless — and sick — because of medical debt.”

A Downward Spiral

Medical debt can undermine housing security in several ways. For some, it depresses credit scores, making it difficult to get a lease or a mortgage. Last year, about 1 in 8 U.S. consumers with a credit report had a medical debt listed on it, according to the nonprofit Urban Institute.

Patients with chronic medical conditions may fall behind on rent or home payments as they scramble to keep medical debts in check to preserve access to health care. Many hospitals and other providers will turn away patients with outstanding bills, KFF Health News found.

Denise Beasley, who also assists clients at CEDP in Denver, said many older people, who typically depend most on physicians and medications, believe they must pay their medical and pharmacy bills before anything else. “The elderly are terrified,” she said.

For others, such debt can compound financial struggles brought on by an accident or unexpected illness that forces them to stop working, jeopardizing their health coverage or ability to pay for housing.

In Seattle, researchers found widespread medical debt among residents in homeless encampments. And those with such debt tended to experience homelessness two years longer than encampment residents without it.

More broadly, people with medical debt are more likely to say the debt has caused them to be turned down for a rental or a mortgage than people with student loans or credit card debt, according to a 2019 nationwide survey of renters, homebuyers, and property owners by real estate company Zillow.

For Atencio, who left home at 16, his struggles with medical debt began with the heart attack. He was working at a gas station and living in Trinidad, a small city in southern Colorado near the New Mexico border.

Rushed to a local hospital, he underwent surgery. The bills, which topped $50,000, weren’t covered by his health plan because he’d unknowingly gone to an out-of-network provider, he said. “I fought it as hard as I could, but I couldn’t afford a lawyer. I was stuck.”

Atencio, who is transgender, has close-cropped dark hair and a large tattoo on his right forearm memorializing two friends who died in a car accident. Sitting on an aging couch in an apartment with bars on the windows, he’s philosophical about his long journey from that medical crisis through years of debt and housing insecurity. “We’ve pulled ourselves out of this,” he said. “But it took a toll.”

When Atencio’s credit score dipped close to 300, the lowest rating, there were few places to turn for help. Atencio’s relationship with his parents, who divorced when he was 2, had been strained for years. Atencio got married at 18, but he and his husband rarely had enough to make ends meet. “I remember thinking, ‘What kind of a start to my adult life is this?’”

They were ultimately taken in by Atencio’s mother-in-law. “If it wasn’t for her, we would have been homeless,” he said. But getting out from the debt was agonizing.

“You end up in this cycle,” he said. “You get into debt. Then you take out loans to try to pay off some of the debt. But then there’s all this interest.” With poor credit, Atencio relied at times on payday lenders, whose high interest rates can dramatically increase what borrowers owe. Many employers also check credit scores, which made it difficult for Atencio to land anything but low-wage jobs.

The job at the shelter was a step up, and Atencio this year got the apartment, which is reserved for single-parent families at risk of being homeless. (Atencio separated from his husband last year.)

Colorado’s Housing Challenges

Atencio’s housing struggles are hardly unique. Jim and Cindy Powers, who live in Greeley, a small city north of Denver, saw their own housing dreams collapse after Cindy was diagnosed with a life-threatening condition that required multiple surgeries and left the couple with more than $250,000 in medical debt.

When the Powers declared bankruptcy, the settlement protected their home. But their mortgage was sold, and the new lender rejected the payment plan. They lost the house.

Lindsey Vance, 40, who moved to Denver five years ago seeking more affordable housing than the Washington, D.C., area where she was from, still can’t buy a house because of medical debts. She and her husband have a six-figure income, but medical bills for even routine care that she’s struggled to pay since her 20s have depressed her credit score, making it difficult to get a loan. “We’re stuck in a holding pattern,” she said.

In and around Denver, elected officials, business leaders, and others have become increasingly concerned about medical debt as they look for ways to tackle what many see as a housing crisis.

“These things are deeply connected,” Denver City Council member Sarah Parady said. “As housing prices have gone up and up, I’ve seen more and more people, especially people with a medical issues and debts, lose housing security.” Parady, who ran for office last year to address housing affordability, is helping lead an effort to get the city to buy and retire medical debt for city residents.

Fueled by skyrocketing prices and rising interest rates, the cost of buying a home more than doubled in Denver from 2015 to 2022, according to one recent analysis. And with rents also surging, evictions are rocketing upward after slowing during the first two years of the pandemic.

Perhaps nowhere is Denver’s crisis more visible than on the streets. The city’s downtown is dotted with tents and encampments, including one that stretches over several blocks near the shelter and clinic where Atencio used to work. By one count, metro Denver’s homeless population increased nearly 50% from 2020 to 2023.

CEDP, which was founded to help residents with housing challenges sparked by the pandemic, this year joined other Colorado consumer and patient advocates to push the legislature for stronger protections for patients with medical debt.

And in June, Colorado enacted a trailblazing bill that prohibits medical debt from being included on residents’ credit reports or factored into their credit scores, a move that put the state at the forefront of efforts nationally to expand debt protections for patients.

A few other states are considering similar steps. And in Washington, D.C., consumer and patient advocates are pushing for federal action to limit medical bills on credit reports. In most states — including many with the highest rates of medical debt — patients still have no such protections.

For his part, Atencio is hoping the new apartment marks a turning point.

The home is modest — a small unit in an aging concrete tower. There’s a security guard by the front door and long, linoleum corridors painted institutional blue and brown.

Atencio’s family is settling in, along with four pet rats — Stitch, Cheese, Peach, and Bubbles — who live in a large cage in the living room. “This feels like freedom,” said Atencio.

He’s tried to give his children, who are 5 and 11, a sense of security: home-cooked meals and the space to play or hang out in their own bedrooms. Like parents everywhere, he frets over their screen time and rolls his eyes when they critique what’s for dinner. (They didn’t like the potatoes he put in a pot roast.)

They are all full-time students: Atencio, who left his job at the shelter, is working on a master’s in social work. His son just started kindergarten, and his daughter is in middle school. “I have big plans and big goals,” he said.

And with several thousand dollars of medical debt still to pay off, Atencio said he’s careful not to take his kids to an out-of-network hospital or physician. “I won’t make that mistake again,” he said.

About This Project

“Diagnosis: Debt” is a reporting partnership between KFF Health News and NPR exploring the scale, impact, and causes of medical debt in America.

The series draws on original polling by KFF, court records, federal data on hospital finances, contracts obtained through public records requests, data on international health systems, and a yearlong investigation into the financial assistance and collection policies of more than 500 hospitals across the country. 

Additional research was conducted by the Urban Institute, which analyzed credit bureau and other demographic data on poverty, race, and health status for KFF Health News to explore where medical debt is concentrated in the U.S. and what factors are associated with high debt levels.

The JPMorgan Chase Institute analyzed records from a sampling of Chase credit card holders to look at how customers’ balances may be affected by major medical expenses. And the CED Project, a Denver nonprofit, worked with KFF Health News on a survey of its clients to explore links between medical debt and housing instability. 

KFF Health News journalists worked with KFF public opinion researchers to design and analyze the “KFF Health Care Debt Survey.” The survey was conducted Feb. 25 through March 20, 2022, online and via telephone, in English and Spanish, among a nationally representative sample of 2,375 U.S. adults, including 1,292 adults with current health care debt and 382 adults who had health care debt in the past five years. The margin of sampling error is plus or minus 3 percentage points for the full sample and 3 percentage points for those with current debt. For results based on subgroups, the margin of sampling error may be higher.

Reporters from KFF Health News and NPR also conducted hundreds of interviews with patients across the country; spoke with physicians, health industry leaders, consumer advocates, debt lawyers, and researchers; and reviewed scores of studies and surveys about medical debt.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Céline Gounder, KFF Health News’ senior fellow and editor-at-large for public health, discussed the podcast “Epidemic: Eradicating Smallpox” podcast on NPR’s “Shortwave” on Aug. 30. Gounder also discussed new covid variants, vaccines, and the new season of the “Epidemic: Eradicating Smallpox” podcast on Lemonada Media’s “In the Bubble With Andy Slavitt” on Aug. 23.

• Click here to hear Gounder on “Shortwave”
• Click here to hear Gounder on “In the Bubble With Andy Slavitt”
• Listen to “Epidemic: Eradicating Smallpox”

KFF Health News senior correspondent Aneri Pattani discussed the latest developments in opioid settlement funds being distributed across the country on WFAE’s “Charlotte Talks With Mike Collins” on Aug. 30.

• Click here to hear Pattani on “Charlotte Talks With Mike Collins”
• Read Pattani’s “Meet the People Deciding How to Spend $50 Billion in Opioid Settlement Cash”

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More than four years ago, then-President Donald Trump declared an ambitious goal that had bipartisan support: ending the HIV epidemic in the United States.

Now, that Trump program is one of several health initiatives targeted for substantial cuts by members of his own party as they eye next year’s elections.

Pushing a slate of conservative political priorities that also takes aim at sex education for teens, health worker vaccine mandates, and more, Republicans in the House of Representatives have proposed a spending bill that would cut $1.6 billion from the Centers for Disease Control and Prevention — one-sixth of the agency’s budget.

The proposal would zero out the agency’s share of the Trump HIV plan, which was more than a third of the program’s budget in the current fiscal year. It would also eliminate funding through other channels, such as the Health Resources and Services Administration’s Ryan White HIV/AIDS Program.

With another budget fight and potential government shutdown looming Oct. 1, the specific proposal is unlikely to clear Congress. Still, former CDC officials said they fear it is the opening bid on what could nonetheless be debilitating reductions to a strained agency that has lost some public support in recent years.

The cuts come on the heels of other recent reductions at the CDC, triggered by the eleventh-hour debt-ceiling deal, to its budgets for childhood vaccination programs and prevention of sexually transmitted infections. And they provide an early opportunity for the CDC’s new director, Mandy Cohen, to show how well she can convince members of Congress to protect the agency’s interests in a polarized political landscape.

“Public health is being politicized to a point that’s never been seen,” said Kyle McGowan, of consulting firm Ascendant Strategic Partners, who served as chief of staff at the CDC during the Trump administration. Cutting public health spending “is not smart,” he said. “These culture wars are now leaking into and harming public health.”

He called the proposed cuts unprecedented in their targeting of bipartisan public health initiatives.

The House Republican spending proposal, which came from members of the Labor, Health and Human Services, Education subcommittee, also targets programs that have drawn the ire of conservative lawmakers, such as those that focus on climate change and gun violence research.

“Cuts to the Centers for Disease Control and Prevention are as outrageous as they are dangerous,” said Connecticut Rep. Rosa DeLauro, the highest-ranking Democrat on the subcommittee.

But Rep. Kay Granger, the Texas Republican who chairs the House Appropriations Committee, said the bill “works to responsibly fund programs that help improve the health and lives of the American people. It also holds agencies accountable when there has been a history of poor performance or controversial activities.”

Granger and the chair of the subcommittee that drafted the bill, Rep. Robert Aderholt (R-Ala.), did not respond to requests for further information.

The House Appropriations Committee has yet to mark up and vote on the measure, which would also need the approval of the full Republican-controlled House and Democratic-controlled Senate. The Senate Appropriations Committee has approved its own health spending bill, which largely maintains existing CDC funding for HIV and would require the two chambers to work together to produce a consensus measure.

And any spending measure would also need the signature of President Joe Biden, whose most recent budget proposal included a request for $850 million to reduce new HIV cases.

The CDC declined to comment on the possible cuts, saying it would be premature to do so amid the ongoing budget process.

The Trump administration’s HIV program launched in 2019 with the goal of cutting new infections nationwide by 90% by 2030. It has sent more than $1.7 billion, through different federal health agencies, to HIV hot spots around the country.

But the program has run into significant headwinds. The covid-19 pandemic diverted the attention of public health officials. Plus, red tape, along with persistent stigma and discrimination fueled by anti-LGBTQ+ messaging from politicians, have many health officials worried it won’t meet its ambitious goals.

House Republicans said the HIV program, well shy of its first main milestone, in 2025, hasn’t met its goals.

“This program has demonstrated a lack of performance data based on outcomes, insufficient budget justifications, and vague spend plans. The initiative has not met its original objectives,” the Republican-led subcommittee wrote in a report that KFF Health News obtained but could not independently verify as official. Granger and Aderholt did not respond to requests to verify the document.

Trump’s Ending the HIV Epidemic initiative isn’t the only Republican-created HIV program being targeted.

A number of key provisions in the President’s Emergency Plan for AIDS Relief, known as PEPFAR, are set to expire on Sept. 30. The program, which funds HIV and AIDS prevention around the world, has saved millions of lives, and is widely seen as a public health and foreign policy success. It was launched in 2003 under then-president George W. Bush.

But discussions about reauthorizing the program have been derailed by Republican claims it finances abortion. PEPFAR won’t immediately stop its work, but missing the deadline could signal an uncertain future for the program, experts say.

Regarding the Trump HIV initiative, service providers say any budget reductions would slow the progress it has made in the fight against the disease.

“There’s a lot at stake here,” said Justin Smith, of Positive Impact Health Centers, an Atlanta-area HIV clinic. Smith has helped Georgia public health officials plan the distribution of Ending the HIV Epidemic funds among the four priority counties in the state.

Smith said the proposed cuts would be “quite devastating” for the work being done in Cobb, DeKalb, Fulton, and Gwinnett counties in metropolitan Atlanta. That work has included ramping up HIV testing and PrEP, or preexposure prophylaxis, programs, as well as expanding care for transgender people living with the virus.

The South has the highest rate of new HIV diagnoses in the country, and many Ending the HIV Epidemic target areas are in the region.

In Louisiana, which has two of those HIV priority areas, the program has helped reduce the number of late HIV diagnoses and maintain levels of viral suppression, said Samuel Burgess, the director of the state’s STI and HIV prevention program.

Even if the budget cuts don’t survive the legislative process fully intact, it’s “very concerning” that lawmakers would even propose such a cut, Burgess said.

HIV policy advocates are pushing back on the House Republican proposal. In July, the Federal AIDS Policy Partnership sent a letter to House appropriators warning of its potential impact.

“We are deeply concerned that this bill will not only stop progress being made to achieve the goals set forth by former President Trump in 2019, but will exacerbate the HIV epidemic which has plagued our nation for 40 years,” they wrote.

Cohen, who started with the CDC in July, is familiar with the budget process, having spent time in top leadership positions within the U.S. Department of Health and Human Services.

But she’s new to the CDC and, regardless of her inside-the-Beltway experience, will need time to get up to speed, which could potentially leave the agency vulnerable, said McGowan. “It’s a difficult time to have a leadership change at the CDC,” he said. But he added that “Dr. Cohen is doing a great job meeting with everyone on the Hill, both Democrats and Republicans.”

The fights over HIV programs concern Tom Frieden, who served as CDC director under former President Barack Obama. He estimated he made more than 250 trips to Capitol Hill over nearly eight years to sell the agency’s work to lawmakers.

He called the Atlanta-based CDC’s location outside of Washington a “double-edged sword.”

“People used to say to me, ‘Gee, isn’t it great, we’re not bugged by politicians down here in Atlanta?’” Frieden said.

While the location helps cushion the agency from politics, he said, it also makes it harder to get support from members of Congress.

But the CDC’s response to covid pulled it back into the political fray. Frieden said he is hopeful the Democratic-controlled Senate will act as a “hard stop” against the Republican attacks — but he warned that substantial cuts can slip through the cracks.

“It’s always a risk that some important stuff at the eleventh hour doesn’t happen,” Frieden said.

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Heat-related illness and deaths in California and the U.S. are on the rise along with temperatures, and an increase in drug use and homelessness is a significant part of the problem, according to public health officials and data from the Centers for Disease Control and Prevention.

Heat was the underlying or contributing cause of about 1,670 deaths nationwide in 2022, for a rate of about 5 deaths per million residents, according to provisional data from the CDC. That’s the highest heat-related death rate in at least two decades. Data from this year, which has been exceptionally hot in much of the country, is not yet available. The next-highest death rate was logged in 2021.

Heat-related illness ranges from heat exhaustion, which causes heavy sweating and a rapid pulse, to heatstroke, which causes confusion, loss of consciousness, high fever, and in many of the severest cases even death. Heat-related illness can occur alongside and exacerbate other health conditions.

The simplest explanation for the increase is that it is getting hotter. The last eight years were the hottest on record, according to NASA figures dating to the late 1800s.

But factors other than climate change also play a role.

Substance abuse, especially misuse of methamphetamines, has emerged as a major factor in heat-related illness. Methamphetamines can cause body temperature to increase to dangerous levels, and the combination of meth abuse, heat, and homelessness can be fatal.

About 140 death certificates in California listed both heat-related illness and drug overdose as causes from 2018 through 2022, according to CDC data. That’s about 25% of all deaths in which heat-related illness was an underlying or contributing factor.

Homelessness has risen in the past few years, including in several hot Western states like California, and unsheltered homeless people are particularly vulnerable during heat waves. Homeless people represented about 13% of California hospitalizations involving a primary diagnosis of heat-related illness from 2017 through 2021, state data shows. California’s 172,000 unhoused residents make up fewer than half a percent of the state’s population, federal data shows.

“With any environmental crisis, people experiencing homelessness experience it first, they experience it worst, and they experience it longest,” said Katie League, behavioral health manager for the National Health Care for the Homeless Council.

The elderly are also particularly vulnerable to heat-related illness. Their bodies often don’t adjust as well as younger people’s to temperature change, and they often have chronic health conditions exacerbated by heat. The numbers of elderly residents in California and across America have risen sharply as baby boomers have aged.

The climate trends are worrying. Heat waves are starting earlier and lasting longer, said the Public Health Institute’s Paul English, director of Tracking California, which makes environmental health data accessible.

He pointed to the recent heat wave in Phoenix, which saw a record 31 consecutive days with temperatures of at least 110 degrees. “This just means no break for the human body to recuperate,” he said. Heat-related illness had led to about 2,810 emergency room visits in Arizona this year as of July 29, up more than 25% from the same point in 2022, state data shows.

And the numbers tell only part of the story: Heat-related illness is often underdiagnosed. A 2021 Los Angeles Times investigation found that the true number of excess deaths and hospitalizations during a heat wave is often much higher than the official count.

“This is an underestimate of what’s happening,” English said.

California’s Riverside County, home of the desert resort of Palm Springs, has been hit especially hard by heat illness, with a hospitalization rate about 75% higher than the statewide rate.

“We have a large population that lives in the desert,” said Wendy Hetherington, branch chief of epidemiology and program evaluation for the Riverside University Health System. “It’s an older population, too. We also do have a lot of the farm-working community that works outside year-round.”

In California, hospitalizations involving a diagnosis of heat-related illness spiked from 2017 through 2021, rising to levels not seen since the state’s infamous 2006 heat wave, according to the most recent data from the state Department of Health Care Access and Information. Hospitalization data for 2022 is not yet available. Emergency room visits for heat-related illness have also trended higher, in California and nationwide.

Advocates and experts called for more cooling centers, more affordable housing, and better workplace safety rules to help get vulnerable populations out of the rising heat.

A recent scientific study found the human body does not function optimally when outside temperatures rise to 104 degrees or higher. Temperatures that high often cause the body to burn more calories while simultaneously raising heart rates.

“The problem,” English said, “is we’re reaching the human limit of adapting to temperature.”

Phillip Reese is a data reporting specialist and an associate professor of journalism at California State University-Sacramento.

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

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A U.S. military firefighter for 32 years, Kurt Rhodes trained and performed his duties with aqueous film forming foam, or AFFF — a highly effective fire suppressant that he never knew contained PFAS chemicals, now known to be harmful to human health.

New federal research links testicular cancer in U.S. service members to the “forever chemicals,” adding to a growing body of evidence of the dangers they pose. Rhodes lives in fear that he, like many of his colleagues, will get sick.

“It’s kind of like a Russian roulette,” he said. “Are you going to get the cancers or are you going to be one of the lucky ones who doesn’t?”

The chemicals in the firefighting foam are suspected to have polluted more than 700 active and former military installations as well as thousands of towns across the U.S., potentially exposing millions of people to long-term health risks, say the scientists and public health experts who study the chemicals. The contamination was the result of industrial spills, dumping, and firefighting.

The new testicular cancer findings, as well as new requirements to fund PFAS testing in some communities, have firefighters like Rhodes on edge.

Many have sought recently developed blood serum tests to determine their cumulative levels of perfluoroalkyl and polyfluoroalkyl substances, or PFAS. But it’s unclear what they should do with those test results, given there are no medical treatments to remove PFAS from the body.

“It is stressful, especially when you know there is a chance of cancer,” said former Air National Guard firefighter Jeffrey Warrick, noting he has a worrisome skin condition he believes was caused by PFAS exposure. It worsens in warm weather, he said, and “freaks me out.”

In 2020, Congress required the Department of Defense to offer active-duty military firefighters blood tests for PFAS, thousands of compounds dubbed “forever chemicals” because they accumulate in the human body and don’t break down in the environment. Some states followed suit or even preceded the federal legislative action.

Indiana passed a bill effective July 1 that establishes a biomonitoring pilot program to provide PFAS blood testing for 1,000 of the state’s firefighters. New Hampshire requires insurers to cover PFAS blood tests, and a bill introduced in Maine this year would do the same.

But while the tests have been a major step forward in understanding the scope of the issue across the country, medical providers often aren’t sure how to interpret the results.

Breaking the Code

The National Academies of Sciences, Engineering, and Medicine issued preventive medical guidance last year for those whose test results confirm a level of PFAS chemicals in their blood meriting concern.

The national academies recommended that patients with readings between 2 and 20 nanograms per milliliter limit additional exposure and screen for high cholesterol, breast cancer, and, if pregnant, high blood pressure. At 20 ng/mL and above, the report recommends further assessment.

But even with these published guidelines, finding doctors knowledgeable about interpreting the blood test results and inferring the possible health effects of PFAS exposure can be slow going.

Kevin Ferrara, a former Air Force firefighter who now advocates for military personnel and firefighters, said they simply want their physicians to be more educated on PFAS contamination and its health consequences.

“Firefighters really need to concentrate on their jobs, not ‘How do I decipher my blood tests?’” Ferrara said. “Physicians should have a basic understanding of PFAS, and they simply don’t.”

To muddy matters further: With so many types of PFAS, not all of them show up in the blood tests. Some compounds manifest elsewhere, such as in organ tissue or other parts of the blood, said Neil McMillan, the International Association of Fire Fighters’ director of science and research.

“These PFAS blood panels are complicated,” McMillan said. “The results you get back may not show the full picture of your body burden.”

Graham Peaslee, a University of Notre Dame professor who studies PFAS, said he knows of seven civilian and military firefighters who have had a rare form of brain cancer, glioblastoma, three of whom resided in South Bend, Indiana.

The aggressive disease has only sparsely been studied and its causes are not understood, although scientists suspect environmental exposures may be to blame.

“What’s really interesting is it’s [about] a one-in-a-million disease,” Peaslee said. “There aren’t 7 million firefighters in this country. How was that possible?”

State Rep. Maureen Bauer, a Democrat who authored the Indiana PFAS testing bill and represents South Bend, said the program was inspired in part by those firefighters who died of brain cancer.

“Blood testing is providing one more useful bit of information,” Bauer said. “If you’re exposed, but you don’t know what your levels are, if you have fertility issues, high blood pressure, thyroid problems, that could all go back to your blood levels.”

Guarding Against Risks

Ned Calonge, who is the associate dean for public health practice of the Colorado School of Public Health and co-authored the national academies’ report, said that taking proactive measures in communities with known high exposure, such as among firefighters and military service members and their families who lived on bases, is particularly important.

“It depends on how much different states have paid attention to it,” Calonge said. “I wouldn’t say that we’ve advanced very far in terms of clinician education in the area of the PFAS exposure.”

Congress passed legislation last year that gave medical benefits and disability compensation to federal firefighters who develop one or more of 16 health conditions within 10 years of service. The illnesses include 14 types of cancer, chronic obstructive pulmonary disease, and cardiovascular events such as heart attack and stroke that occur within 24 hours of engaging in their jobs.

But firefighters want to learn how to prevent these illnesses from taking hold. Because PFAS chemicals accumulate in the body, older people typically have higher levels than younger people. Men tend to have higher levels than women, which researchers attribute to menstruation helping eliminate the chemicals from the body.

Over time, if people limit exposure, PFAS levels in the blood can slowly drop as the chemicals are excreted. For example, PFOS, the legacy chemical found in AFFF that’s no longer used, has a half-life in humans of 4.8 years. While researchers estimate that everyone has some level of PFAS in their bodies, Calonge said, people with levels above 20 ng/mL in their blood should particularly avoid additional exposure.

Although full avoidance may be nearly impossible — these chemicals can be found in nonstick cookware, industrial lubricants, cosmetics, and even food wrappers — those with high amounts of known exposure should consider filtering their drinking water and removing stain-resistant carpet, water-repellent clothing, and other PFAS-containing household goods from their homes, Calonge said.

Experts point to reverse osmosis filters under a kitchen sink or at the tap as the most effective way to remove PFAS from drinking water, but the systems can be expensive, putting them out of reach for some Americans. Some tabletop water filters seem pretty effective, too. The American National Standards Institute and NSF have certified water filters from 15 manufacturers for the reduction of select PFAS chemicals.

Holding Out Hope

While there are no known treatments for the buildup of PFAS chemicals in one’s body, an Australian study published last year found that firefighters with high levels of PFAS reduced their levels by 10% over a year when they donated blood every 12 weeks and by 30% if they donated plasma every six weeks.

Jeff Burgess, a University of Arizona Health Sciences researcher, seeks to duplicate the findings and take it a step further — determining whether a reduction in PFAS levels yields lower cardiovascular and cancer risk.

The plan is to enroll 1,500 firefighters in the study who will donate blood or plasma for a year, monitoring for DNA methylation cancer biomarkers.

As for the ethics of letting firefighters with known PFAS contamination contribute to the nation’s blood banks, Burgess noted that nearly everyone in the U.S. is thought to have some PFAS in their bodies and that, given chronic shortages, the need for donated blood outweighs the risks.

“From my perspective, the benefits of giving blood, even though it has some degree of PFAS in it, are much greater than the potential harm from the PFAS that people might receive because, again, blood products can be lifesaving,” Burgess said.

Citing the Australian study, Nicole Maul, director of media relations for the American Red Cross, which manages standards and quality control for the blood banks, said further study is needed to determine whether donations by firefighters have any “clinical implications.”

“No study has shown a detrimental effect of such substances in blood for donors or recipients,” Maul said. “The Red Cross and the FDA work together to ensure the blood supply is as safe as possible, and individuals should not worry about the safety of donating or receiving blood.”

A Department of Defense spokesperson said Aug. 29 that the Pentagon uses the Centers for Disease Control and Prevention’s Agency for Toxic Substances and Disease Registry to guide its firefighter PFAS testing program and develop information it provides to personnel, including military physicians, on the potential health effects of PFAS.

“It is not possible yet to distinguish PFAS exposures by DoD personnel in their occupational setting from those they may experience from consumer products, so much of the information provided is general PFAS health effects information,” said Peter Graves, chief of media operations for the Defense Health Agency. “The DoD will update occupational health provider fact sheets when ATSDR updates their PFAS clinical guidelines and develop or incorporate available PFAS training modules for healthcare providers, as appropriate.”

Graves added that the Defense Department is interested in the outcomes of ongoing health studies by the Agency for Toxic Substances and Disease Registry as well as toxicology assessments by the Environmental Protection Agency and noted that the Pentagon supported the testicular cancer study by allowing use of the Department of Defense Serum Repository and including it in the Pentagon’s Congressionally Directed Medical Research Programs.

CDMRP research projects are not requested by the Pentagon in its annual budget, but instead are supported by extra money that Congress gives the department to manage research projects that members deem necessary to advance medical science and promote the health of the armed forces.

Rhodes, the veteran military firefighter, said he has high hopes for the University of Arizona research and would like to see more studies done on reducing PFAS exposure as well as the illnesses linked to PFAS. He also wants Congress to extend the health and disability benefits for a lifetime for those illnesses.

“I put my life on the line for 30 years for people I didn’t know, and I did it willingly,” he said. “That is every firefighter’s mindset. Now we are asking for a little bit. There’s something out there killing us. Keep researching and don’t give us pushback when we want testing. Make it easier for us.”

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Samuel Hanke is a pediatric cardiologist in Cincinnati, but when you ask him for his title, he follows it by saying: “Most importantly, I’m Charlie’s dad.”

Hanke remembers the night 13 years ago when Charlie, then 3 weeks old, was fussier than usual, so he picked him up to soothe him back to sleep. With Charlie still in his arms, he sat on the couch, turned on the TV, and nodded off.

“We were kind of chest to chest, the way you see in pictures a lot,” Hanke said. But he didn’t realize Charlie’s airways were blocked. Too young to turn his head, too squished to let out a cry, Charlie died silently. The next morning, Hanke woke up to his worst nightmare. Years of medical school weren’t enough to prevent Hanke from losing Charlie to accidental suffocation.

Sudden infant death syndrome, a well-known term that describes unexplained but natural infant deaths resulting from an unknown medical abnormality or vulnerability, is the leading cause of unexpected deaths among infants in the U.S. It has long been among new parents’ greatest fears.

Rates for SIDS have declined since the 1990s, but a different cause of infant death — accidental suffocation or strangulation — has also been a persistent problem. That national rate for the past decade has hovered between 20 and 25 infant deaths per 100,000 live births, accounting for around a fifth of all unexpected infant deaths, according to the Centers for Disease Control and Prevention. Accidental suffocations and strangulations aren’t necessarily happening more often, some experts say; rather, fatality review teams have become better at identifying causes of death.

And the trend remains steady despite decades of public information campaigns imploring parents to take steps to keep their babies safe while sleeping.

In the mid-1990s, the National Institute of Child Health and Human Development launched its “Back to Sleep” campaign, to teach parents to lay infants on their backs to sleep. “There were tremendous results after ‘Back to Sleep,’” said Alison Jacobson, executive director of First Candle, a Connecticut-based nonprofit group focused on safe sleep education. Unexpected infant deaths dipped about 40% from 1990 levels, which was before that campaign launched, according to the CDC. “But then it plateaued,” Jacobson said.

The NICHD eventually broadened this message with other ways to limit risks beyond a baby’s sleep position with the “Safe to Sleep” initiative.

Some clear warnings from it: Infants shouldn’t sleep with blankets, stuffed toys, or bumpers that “can potentially lead to suffocation or strangulation,” said Samantha St. John, program coordinator for Cook Children’s Health Care System in Fort Worth, Texas. They also should sleep in cribs or bassinets — not on beds with siblings or in parents’ arms.

But these public health messages — contradicted by photos or videos circulating in movies and social media — don’t always find traction. Professional photos of infants, for example, too commonly show them peacefully snoozing surrounded by plush animals and blankets. St. John added that parents sometimes have preconceived ideas of how infants’ sleeping spaces should be decorated. “When you think of cribs and nurseries and things like that, you imagine the pictures in the magazines,” St. John said. “And those are beautiful pictures, but it doesn’t keep your baby safe.”

St. John said many parents know that babies should be on their backs to sleep, but warnings about strangulation by blankets or suffocation by sharing a bed with them sometimes fall through the cracks.

For instance, new parents, especially single parents, are more likely to accidentally fall asleep with their infants because of exhaustion, said Emily Miller, a neonatologist at Cincinnati Children’s Hospital.

The idea that sleeping with one’s baby is dangerous can also be counterintuitive to a new parent’s instinct. “We feel like being close to them, being able to see them, being able to touch them and feel that they’re breathing is the best way we can protect them and keep them safe,” said Miller, who is also an assistant professor at the University of Cincinnati’s Department of Pediatrics.

Organizations across the country are working to help parents better understand the true risks. Hanke and his wife, for instance, channeled their grief into Charlie’s Kids, a nonprofit focused on safe sleep practices for infants. The Hankes also wrote a book, “Sleep Baby, Safe and Snug,” which has sold about 5 million copies. The proceeds are used to continue their educational efforts.

Ohio, where Charlie’s Kids is based, in 2020 saw 146 sudden unexpected infant deaths, a classification that includes SIDS, accidental suffocation and strangulation, and other instances in which the cause is undetermined. That’s about a death for every 1,000 live births, according to the state’s health department. Thirty-six percent of those deaths were attributed to accidental suffocation or strangulation. Nationally, the rate of these unexplained deaths has declined since the 1990s, but, according to the CDC, significant racial and ethnic differences continue.

The particular risks for an infant’s accidental suffocation in many respects are situational — and often involve people at the lower end of the income scale who tend to live in close quarters. People who live in a small apartment or motel often share sleep space, said St. John.

Tarrant County has one of Texas’ highest rates of infant deaths — three to four each month — attributed to accidental suffocation.

So, organizations like the Alliance for Children in Tarrant County, which serves Fort Worth and parts of Dallas, have been providing free bassinets and cribs to those in need.

County representatives spoke during the state’s Child Fatality Review Team meeting in May and focused on the prevalence of infant deaths linked to accidental suffocation. For the past decade, data shows, the county has averaged 1.05 sudden unexpected infant deaths per 1,000 births, which is higher than both the state and national averages of 0.85 and 0.93, respectively. During a 15-month period starting in 2022, Cook Children’s Medical Center saw 30 infants born at the hospital die after they left because of unsafe sleeping environments.

Sometimes parents’ decisions are based on fears that stem from their environments. “Parents will say ‘I’m bringing my baby into bed because I’m afraid of gunshots coming through the window, and this is how I keep my baby safe’ or ‘I’m afraid rats are going to crawl into the crib,’” said First Candle’s Jacobson.

She understands these fears but stresses the broader context of safe sleep.

The key to educating parents is to begin when they are still expecting because they receive “a load of information” in the first 24 or 48 hours after a baby is delivered, said Sanjuanita Garza-Cox, a neonatal-perinatal specialist at Methodist Children’s Hospital in San Antonio. Garza-Cox is also a member of the Bexar County Child Fatality Review Team.

And once a child is born, the messaging should continue. In Connecticut, for instance, First Candle hosts monthly conversations in neighborhoods that bring together new parents with doulas, lactation consultants, and other caregivers to discuss safe sleep and breastfeeding.

And both Tarrant and Bexar counties are placing ads on buses and at bus stops to reach at-risk parents and other caregivers such as children, relatives, and friends. Parents are very busy, Garza-Cox said. “And sometimes, multiple children and young kids are the ones watching the baby.”

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Sometimes the heat makes you vomit, said Carmen Garcia, a farmworker in the San Joaquin Valley of California. She and her husband spent July in the garlic fields, kneeling on the scorched earth as temperatures hovered above 105 degrees. Her husband had such severe fatigue and nausea that he stayed home from work for three days. He drank lime water instead of seeing a doctor because the couple doesn’t have health insurance. “A lot of people have this happen,” Garcia said.

There are no federal standards to protect workers like the Garcias when days become excessively hot. And without bipartisan support from Congress, even with urgent attention from the Biden administration, relief may not come for years.

President Joe Biden in 2021 tasked the Occupational Safety and Health Administration with developing rules to prevent heat injury and illness. But that 46-step process can take more than a decade and might stall if a Republican is elected president in 2024, because the GOP has generally opposed occupational health regulations over the past 20 years. These rules might require employers to provide ample drinking water, breaks, and a cool-down space in shade or air conditioning when temperatures rise above a certain threshold.

On Sept. 7, OSHA will begin meetings with small-business owners to discuss its proposals, including actions that employers would take when temperatures rise to 90 degrees.

As this summer has broken heat records, Rep. Judy Chu (D-Calif.) and other members of Congress have pushed legislation that would speed OSHA’s rule-making process. The bill is named after Asunción Valdivia, a farmworker who fell unconscious while picking grapes in California on a 105-degree day in 2004. His son picked him up from the fields, and Valdivia died of heatstroke on the drive home. “Whether on a farm, driving a truck, or working in a warehouse, workers like Asunción keep our country running while enduring some of the most difficult conditions,” Chu said in a July statement urging Congress to pass the bill.

Trade organizations representing business owners have fought the rules, calling the costs of regulations burdensome. They also say there’s a lack of data to justify blanket rules, given variation among workers and workplaces, ranging from fast-food restaurants to farms. The U.S. Chamber of Commerce, one of the most powerful lobby groups in Washington, argued that such standards are nonsensical “because each employee experiences heat differently.” Further, the Chamber said, measures such as work-rest cycles “threaten to directly and substantially impair … employees’ productivity and therefore their employer’s economic viability.”

“Many heat-related issues are not the result of agricultural work or employer mismanagement, but instead result from the modern employee lifestyle,” the National Cotton Council wrote in its response to proposed regulations. For example, air conditioning makes it more difficult for people to adapt to a hot environment after being in a cold dwelling or vehicle, it said, noting “younger workers, who are more used to a more sedentary lifestyle, cannot last a day working outside.”

The Forest Resources Association, representing forest landowners, the timber industry, and mills, added that “heat-related illnesses and deaths are not among the most serious occupational hazards facing workers.” They cited numbers from OSHA: The agency documented 789 heat-related hospitalizations and 54 heat-related deaths through investigations and violations from 2018 to 2021.

OSHA concedes its data is problematic. It has said its numbers “on occupational heat-related illnesses, injuries, and fatalities are likely vast underestimates.” Injuries and illnesses aren’t always recorded, deaths triggered by high temperatures aren’t always attributed to heat, and heat-related damage can be cumulative, causing heart attacks, kidney failure, and other ailments after a person has left their place of employment.

The Toll of Temperature

To set regulations, OSHA must get a grasp on the toll of heat on indoor and outdoor workers. Justification is a required part of the process because standards will raise costs for employers who need to install air conditioning and ventilation systems indoors, and those whose productivity may drop if outdoor workers are permitted breaks or shorter days when temperatures climb.

Ideally, business owners would move to protect workers from heat regardless of the rules, said Georges Benjamin, executive director of the American Public Health Association. “We need to do a better job of convincing employers that there is a trade-off between efficiency and sick workers,” he said.

Garcia and her husband suffered the symptoms of heat exhaustion: vomiting, nausea, and fatigue. But their cases are among thousands that go uncounted when people don’t go to the hospital or file complaints for fear of losing their jobs or immigration status. Farmworkers are notoriously underrepresented in official statistics on occupational injuries and illness, said David Michaels, an epidemiologist at George Washington University and former OSHA administrator. Researchers who surveyed farmworkers in North Carolina and Georgia found that more than a third of them had heat illness symptoms during the summers of their studies — far higher than what OSHA has registered. Notably, the Georgia study revealed that 34% of farmworkers had no access to regular breaks, and a quarter had no access to shade.

Even cases in which workers are hospitalized might not be attributed to heat if doctors don’t make note of the connection. Many studies link occupational accidents to heat stress, which can cause fatigue, dehydration, and vertigo. In a study in Washington state, farmworkers were found to fall off ladders more often in June and July, among the hottest and most humid months. And in a 2021 report, researchers estimated that hotter temperatures caused approximately 20,000 occupational injuries a year in California between 2001 and 2018, based on workers’ compensation claims.

Heat-related kidney injuries also come up in OSHA’s database of workers severely injured on the job, like an employee at a meat processing plant hospitalized for dehydration and acute kidney injury on a hot June day in Arkansas. But research finds that kidney damage from heat can also be gradual. One study of construction workers laboring over a summer in Saudi Arabia found that 18% developed signs of kidney injury, putting them at risk of kidney failure later.

In addition to quantifying the injuries and deaths caused by heat, OSHA attempts to attach a cost to them so it can calculate potential savings from prevention. “You’ve got to measure things, like what is a life worth?” Michaels said. To workers and their families, suffering has far-reaching consequences that are hard to enumerate. Medical costs are more straightforward. For example, OSHA estimates the direct cost of heat prostration — overheating due to heatstroke or hyperthermia — at nearly $80,000 in direct and indirect costs per case. If this seems high, consider a construction worker in New York who lost consciousness on a hot day and fell from a platform, suffering a kidney laceration, facial fractures, and several broken ribs.

Putting a Price Tag on Heatstroke

Researchers have also tried to tease out the cost to employers in lost productivity. Work moves less efficiently as temperatures rise, and if workers are absent because of illness, and if they have to be replaced, production diminishes as new workers are trained to do the job. Cullen Page, a line cook in Austin, Texas, and a member of the union Restaurant Workers United, works for hours in front of a pizza oven, where, he said, temperatures hovered between 90 and 100 degrees as heat waves blanketed the city in August. “It’s brutal. It affects your thinking. You’re confused,” he said. “I got a heat rash that wouldn’t go away.” Because it’s so hot, he added, the restaurant has a high employee turnover rate. An adequate hood vent over the ovens and improved air conditioning would help, he said, but the owners have yet to make upgrades.

Via 313, the pizza chain where Page works, did not respond to requests for comment.

Page is not alone. An organization representing restaurant employees, Restaurant Opportunities Centers United, surveyed thousands of workers, many of whom reported “unsafely hot” conditions: 24% of those in Houston, for example, and 37% in Philadelphia.

“Workers have been exposed to working temperatures of up to 100 degrees after air conditioners and kitchen ventilators were broken, making it uncomfortable and hard for them to breathe,” wrote another group that includes members in the fast-food industry, the Service Employees International Union, in a comment to OSHA. “There is no reason to further delay the creation of a standard when we know the scale of the problem and we know how to protect workers.”

Researchers at the Atlantic Council estimate the U.S. will lose an average of $100 billion annually from heat-induced declines in labor productivity as the climate warms. “It costs employers a lot of money to not protect their workers,” said Juley Fulcher, the worker health and safety advocate at Public Citizen, an advocacy organization in Washington, D.C., that is lobbying for the Asunción Valdivia bill to allow OSHA to enact regulations next year.

For a template, Fulcher suggested looking to California, Maryland, Nevada, Oregon, and Washington, the only states with rules mandating that all outdoor workers have access to water, rest, and shade. Although the regulations aren’t always enforced, they appear to have an impact. After California instituted its standard in 2005, fewer injuries were reported in workers’ compensation claims when temperatures exceeded 85 degrees.

Michaels said OSHA has shown it can act faster than usual when Congress permits it. In the early days of the HIV/AIDS epidemic, the agency rapidly passed rules to prevent doctors, nurses, and dentists from being accidentally infected by needles. A similar urgency exists now, he said. “Given the climate crisis and the lengthening of periods of extreme heat,” he said, “it is imperative that Congress pass legislation that enables OSHA to quickly issue a lifesaving standard.”

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Montana’s legislature designated $3.7 million this spring to remove lead from school drinking-water supplies, then the state received $565,000 more on Aug. 1 from the $50 billion federal infrastructure package aiming to improve water systems nationally.

But even with these two new pools of money intended to last two years, the state’s schools may struggle to remove all but the most dangerous sources of lead, considering about half the schools that tested their water between July 2020 and February 2022 found high lead levels. Medical experts say no amount of lead is safe to ingest.

“When you start replacing faucets and drinking fountains in the hundreds of schools that we have in Montana, that gets eaten up pretty quickly,” said Democratic state Rep. Paul Tuss, who added the state funding to an infrastructure bill passed this spring.

If the total were divided evenly among the approximately 590 schools that need to meet the state’s new lead testing rules, each school would receive less than $8,000 from the state to test and upgrade its faucets, pipes, and water fountains. The state already knows that 110 schools have had at least one water fixture with lead levels of 15 parts per billion or higher, three times the level that requires action under Montana rules.

Most schools with lead levels over the state limit could address their “exceedances” with the state money, according to state Department of Environmental Quality spokesperson Moira Davin. “Our plan is to address as many schools as possible with this funding,” she said.

But part of the challenge for Montana is that it doesn’t yet know how extensive a problem its schools have. More than a fifth of the state’s schools facing the new rules — 129 facilities — hadn’t completed any sampling as of Aug. 3, said Greg Montgomery, director of the department’s Lead in Schools program. And replacing a single school’s pipes can cost hundreds of thousands of dollars.

Ronnie Levin, an environmental health instructor at the Harvard T.H. Chan School of Public Health, said that the money Montana has in hand is not a lot when it comes to fixing pipes but that it could be enough to get filters on all the faucets.

“We are not talking about solving the whole problem here,” said Levin, who worked on lead exposure during her nearly 40 years at the U.S. Environmental Protection Agency.

Lead is particularly harmful to children and can lead to brain and nervous system damage and slowed development and growth. It typically gets into drinking water in schools through piping or fixtures. A 2020 state rule requires schools to test water supplies every three years. If lead concentrations surpass 5 parts per billion, fixtures must be addressed — and shut off if higher than 15 ppb.

Jessica Reyes, an economics professor at Amherst College, said prioritizing fountains or pipes with high lead levels after a “first draw” test could help a lot. The test measures lead in water the first time a faucet is turned on for the day, after the water’s been sitting in a pipe all night. That sample provides the best data to pinpoint the greatest risks, she said.

Running all faucets for a few minutes before kids get to school is quite protective for kids, Reyes added, because the quantity of lead diminishes as the water runs. But Reyes often imagines a kindergartner getting to school early for free breakfast and drinking from a water fountain before anyone in the building clears the pipes.

“Everything kids need to grow — lead is the opposite of those,” Reyes said.

Montana officials will decide how to distribute the money from the legislature, reimbursing schools for costs such as installing new faucets, water filters, plumbing, and water bottle filling stations. The federal grant, meanwhile, will be used for covering costs related to testing, Montgomery said.

Schools will have to participate in the state’s Lead in Schools program by sampling their drinking water to get any of the state funding, he said, and they won’t be able to use the money on projects completed before the state bill was signed into law.

Montgomery said the amount available to schools would depend on whether they have any fixtures over the “action level,” or fixtures with lead concentrations over 5 ppb. Funding will be prioritized on a first-come, first-served basis, he said.

Even if a school doesn’t have high samples of lead in its test results, Montgomery said, it could seek money to install water bottle filling stations with filters. Schools could also use the money for larger projects such as replacing piping, but, Montgomery said, the state will set a limit on how much each school can get. And, he said, it’s unlikely the money will be able to cover something like a $100,000 pipe replacement project.

The goal is to make money available to all schools, regardless of size, and ensure a couple of schools aren’t “gobbling” the entire amount, Montgomery said. That means schools with extensive issues will likely need to pick which areas to fix.

“We want to make sure the small schools have equal footing as the large schools,” Montgomery said.

Many Montana schools have already launched remediation projects after receiving high lead results.

One sink at Skyview High School in Billings had one of the highest levels of lead detected in schools across the state. Scott Reiter, the executive director of facilities for Billings Public Schools, said the sink was in a control room in the auditorium and people rarely used it. After the results came in, the fixture was removed to make the sink unusable.

On a larger scale, he said, all cold-water piping for drinking and sinks was replaced at Rimrock Learning Center in Billings last summer. Reiter said the school had been remodeled and all fixtures replaced about five years ago, so when lead was detected all over the school, it was clear it wasn’t just one fixture.

“We knew that it had to be in the lines,” Reiter said.

Reiter said the school district used leftover money from a 2013 elementary school district bond to replace Rimrock’s pipes, which he estimated cost $100,000.

While Reiter said he was disappointed costs from the Rimrock pipe replacements and other projects that have already happened couldn’t be reimbursed retroactively, he welcomed the state’s additional funding. “Any help to the schools for something like this is great,” he said.

The Great Falls Public Schools district also exemplifies how extensive and expensive such work can be. The district used $19,511 from an earlier $40,000 state allocation for drinking fountains, water bottle fillers, and filters across schools in the district, said Brian Patrick, its director of business services and operations. He said the district also got 783 tests covered by the state, each costing $25.

His district used a bond passed in 2017 to fund a pipe replacement at Lewis and Clark Elementary School, where 23 tests came in at 5 ppb or higher. The pipes were replaced last summer, Patrick said, costing $411,252.

“It doesn’t get fixed in one fell swoop,” Patrick said.

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For people with cystic fibrosis, like Sabrina Walker, Trikafta has been a life-changer.

Before she started taking the drug, she would wind up in the hospital for weeks at a time until antibiotics could eliminate the infections in her lungs. Every day, she would wear a vest that shook her body to loosen the mucus buildup.

One particularly bad flare-up, known as a pulmonary exacerbation, had her coughing up blood in 2019, so she was put on the newly approved breakthrough medication.

Within a month, her lung function increased by 20%, she said, and her health improved. Before she started taking Trakafta, she could count on three to four hospitalizations a year. Over the four years on the medication, she has been hospitalized only once.

“I was spending hours a day doing airway clearance and breathing treatments, and that has been significantly reduced,” said the 37-year-old Erie, Colorado, mother. “I’ve gained hours back in my day.”

Now she runs and hikes in the thin Colorado air and works a full-time job. Other patients have seen similar gains with the drug therapy, allowing many to resume regular lives and even take themselves off waiting lists for a lung transplant. Yet Walker and scores of other Colorado patients with cystic fibrosis are worried they could lose access to that transformative medication.

A state board charged with addressing the affordability of the most expensive prescription drugs has chosen Trikafta among its first five drugs to review, and it could move to cut the medication’s average in-state annual price of approximately $200,000, accounting for both insurers’ contributions and patients’ out-of-pocket costs. Drugmakers, including Trikafta’s maker, Vertex Pharmaceuticals, have said payment limits could hurt innovation and limit access, stoking panic among patients that the drug might no longer be sold in Colorado.

Two of the drugs chosen by the state board, the rheumatoid arthritis treatment Enbrel and the psoriasis medication Stelara, also appear on the initial list of 10 drugs for which Medicare will negotiate prices. Any federally negotiated price reductions won’t go into effect until 2026, and it’s unclear how that effort will affect the Colorado board’s work in the interim.

The Colorado board’s choice of drugs to review elucidates one of the thorniest questions the board must wrangle with: Would lowering the price tag for rare-disease medications lead manufacturers to pull out of the state or limit their availability? State officials contend that the high cost of prescription drugs puts them out of reach for some patients, while patients worry that they’ll lose access to a life-changing therapy and that fewer dollars will be available to develop breakthrough medications. And with affordability boards in other states poised to undergo similar exercises, what happens in Colorado could have implications nationwide.

“It just puts Trikafta as a whole at risk,” Walker said. “It would start here, but it could create a ripple effect.”

Cystic fibrosis is a genetic condition that causes the body to produce thick, sticky mucus that clogs the lungs and digestive system, leading to lung damage, infections, and malnutrition. It is a progressive disease that results in irreversible lung damage and a median age of death of 34 years. There is no cure.

The rare disease affects fewer than 40,000 people in the U.S., including about 700 in Colorado. That means research and development costs are spread across a smaller number of patients than for more common conditions, such as the millions of people with heart disease or cancer.

Officials from Vertex Pharmaceuticals declined a request for an interview. But company spokesperson Sarah D’Souza emailed a statement saying that “the price of this medicine reflects its value to patients, the small number of people living with CF, the billions of dollars Vertex has invested to date to develop the first medicines to treat the underlying cause of CF, and the billions more we are investing in CF and other serious diseases.”

Setting an upper payment limit, the company said, could hinder access to drugs like Trikafta and curtail investment in scientific innovation and drug discovery.

State officials counter that Vertex and other drugmakers are resorting to fear-mongering to protect their profits.

Colorado Insurance Commissioner Michael Conway said that whenever the state talks about saving people money on health care, the affected entity — be it a hospital, insurance company, or drug manufacturer — cries foul and claims there will be an access problem.

“This is just, from my vantage point, the pharmaceutical industry trying to scare people,” he said.

Colorado’s Prescription Drug Affordability Board has been working for more than a year to sort through 604 drugs eligible for review, with 17 data points for each, to create a prioritized list. In the end, they decided to focus this year only on drugs that had no brand-name competition or generic alternatives that could lower costs.

Besides Trikafta, Enbrel, and Stelara, the board will review the affordability of the antiretroviral medication Genvoya, used to treat HIV, and another psoriasis treatment, Cosentyx.

Of those five, Trikafta had the highest average annual costs but the lowest five-year increase in price and the fewest patients taking it.

The board’s review of the five drugs will happen over its next three to four meetings this year and early next year, allowing all stakeholders — including patients, pharmacies, suppliers, and manufacturers — to provide feedback on whether the drugs are indeed unaffordable and what a reasonable price should be. Any cost limits wouldn’t take effect until next year at the earliest.

The board looked at what patients were paying out-of-pocket for their medicines, using a database that captures all the insurance claims in the state. But that data did not account for patient assistance programs, through which manufacturers reimburse patients for out-of-pocket costs. Such programs boost manufacturer sales of drugs because insurance covers most of the cost, and patients otherwise might not be able to afford them.

Through the first half of the year, Vertex reported profits of $1.6 billion, with 89% of its revenue coming from Trikafta (marketed as Kaftrio in Europe). At the beginning of the year, Vertex decreased copay assistance for people with cystic fibrosis, in what the company said was a response to insurers’ limiting patients’ ability to apply copay assistance to their deductibles.

Lila Cummings, director of the Colorado board, said its staff could not find any entity that collects data on patient assistance programs, so those figures were not available to the board. Once they begin reviewing the individual medications, board members will dig into what extra financial help patients are getting. Cummings also said the board is hoping manufacturers will convey in good faith what might prompt them to leave the Colorado market.

When Trikafta came up second on the Colorado board’s prioritized list of drugs eligible for review, patients and advocacy groups flooded the board with pleas to leave pricing for the medication and other drugs for rare diseases untouched.

“People are scared,” Walker said. “If you look at all the drugs out there, it’s one that has been so transformational that I think it will go down in history for how positively it’s impacted our population as a whole.”

According to the Cystic Fibrosis Foundation, lung exacerbations dropped 65% and lung transplants dropped 80% after the drug’s approval. More patients have been able to work, attend school, or start a family. Clinicians have reported a baby boom among patients who take Trikafta.

A study published this year showed that two-thirds of people with cystic fibrosis struggled with finances, experiencing debt, food insecurity, or trouble paying for household or health expenses. The survey was conducted in 2019, before the FDA approval of Trikafta.

Years ago, the Cystic Fibrosis Foundation invested in Aurora Biosciences, later acquired by Vertex Pharmaceuticals, to promote development of cystic fibrosis therapies. The foundation completed the sale of its royalty rights in 2020.

Mary Dwight, chief policy and advocacy officer for the Cystic Fibrosis Foundation, said the board should “ensure its review of Trikafta accounts for the overall value this drug has for someone with CF, including the impact on an individual’s long-term health and well-being.”

There is no guarantee that the Colorado board will take action on Trikafta. State officials have stressed that board members are solely focused on improving access and wouldn’t jeopardize the availability of the medication.

“We have a history of being able to save people money on health care that doesn’t lead to access problems,” Conway said. “We’re not talking about these companies losing money at all; we’re talking about making it more affordable so that more Coloradans can get access to the pharmaceutical needs that they have.”

But Walker remains unconvinced.

“They had so much testimony on their call and they still selected Trikafta,” she said. “Everyone was just saying how important this drug is, and it didn’t matter. It still got pushed through.”

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When I’laysia Vital got accepted to Texas Southern University, a historically Black university in Houston, she immediately began daydreaming about the sense of freedom that would come with living on her own, and the sense of belonging she would feel studying in a thriving Black community.

Then, a nurse at her high school’s health clinic in Oakland, California, explained the legal landscape of her new four-year home in Texas — where abortion is now fully banned.

Vital watched TikTok videos of protesters harassing women outside clinics in other states. She realized her newfound freedoms would come at the expense of another. That’s when she added one more task to her off-to-college checklist: get a long-acting, reliable form of birth control before leaving California.

“I don’t want to go out there and not know anything, not know where to go, because I’m in a new state. So I’m trying to be as prepared as I can before I leave,” she said.

The change is a huge culture shock for Vital and some of her classmates, who for the past four years at Oakland Technical High School have had access to their own health clinic on campus.

The “TechniClinic” is a bright-purple building across from the football field and bleachers. The school’s bulldog mascot is painted near the door. On-site, students can get free, confidential birth control consults and screenings for sexually transmitted infections and be back at their desks for fourth-period math.

This summer, nurses at the Oakland clinic have formalized the “senior send-off” appointment, during which they counsel students about their legal rights and medical options before they leave for college.

After Roe v. Wade was overturned last year, clinic staffers realized students of color could be disproportionately affected by changes in state abortion laws. Many of them, like Vital, were choosing to go to historically Black colleges and universities in Southern states, where bans and limits on the procedure are more common.

“Many students here are just totally floored when I tell them that these laws are different in the states that they’re going to,” said Arin Kramer, a family nurse practitioner at the TechniClinic. Like many adults, “they can’t believe that they can’t get an abortion in this country.”

Kramer has been writing prescriptions for a year’s supply of contraceptive pills or patches, which students can pick up all at once.

Under California law, students can get contraception for free, without having to tell their parents or use a parent’s insurance plan. Students can pick up the prescription at the school clinic, or Kramer can call it in to a pharmacy near the student’s home.

During her own “senior send-off” appointment, Vital told nurse Kramer she was in the market for something even more reliable than pills.

“Because I’m very forgetful. Even if I set an alarm or write it down, it will still slip my mind,” Vital said.

She wanted a long-term contraceptive, like an IUD or a hormonal implant that would last for years and require no upkeep.

The American College of Obstetricians and Gynecologists and the American Academy of Pediatrics have made these options their top recommendation for adolescents after research from both groups showed they were safe and highly effective at preventing teen pregnancy.

So at Oakland Tech and other school-based health clinics run by nonprofit La Clínica de La Raza, Kramer has trained other nurse practitioners how to insert these devices — so students can get them the same day they ask for them.

After reviewing the options, Vital decided she wanted a contraceptive implant. During their discussion, Kramer used clear, direct terms, even dropping in phrases students use themselves.

“Who are you talking to these days?” Kramer asked Vital, which is teen-speak for: Who are you having sex with?

“Same person,” Vital replied.

“You guys have been off and on, off and on,” Kramer said. “How do you feel going forward?”

“Well, now they’re on because he’s going to Texas, too,” Vital revealed with a smile. “He’s going with me.”

The clinic staff started preparing the exam room, so Vital could get the implant right away. Kramer turned on some calming music on her phone, washed her hands and had Vital lie down and raise her left arm over her head. Physician assistant Andrea Marquez came in to hold Vital’s other hand and offer words of encouragement.

“I’m going to count to three and then you’ll feel a little pinch,” Kramer said, before giving Vital a shot of numbing medication in her tricep area. Then she coached her through a series of deep breaths before inserting the tiny rod under the skin of her upper arm.

The whole procedure took less than 10 minutes, and Vital walked out with a birth control method that will last her up to five years. Now, she said, she can focus on her education and fully experience the new freedoms of college.

“I’m really excited for the growing up part of it,” she said.

Meanwhile, Kramer headed back to her office. She had a list of other patients to check up on, many headed to states that ban abortion. As they pack their books and bed linens for their new dorm rooms, she’s reminding them to also pack a year’s supply of contraception, too.

University-based health centers also are reconsidering their clinical protocols in the wake of the Dobbs v. Jackson Women’s Health Organization Supreme Court ruling that overturned Roe.

In 2020, only 35% of colleges offered on-site IUD insertion and 43% offered contraceptive implant insertion, according to a survey by the American College Health Association.

That group now recommends college clinics do routine pregnancy screenings to identify pregnancies as early as possible, to give students more time to consider their options, and to have legal counsel on call to advise clinicians on allowable practices.

Attorneys might even help advise university health centers about how to have conversations with patients, especially in states like Texas, where local law forbids clinicians from “aiding and abetting” patients who seek abortion care. These new threats — of prosecution or pulled funding — have complicated clinicians’ communication with their collegiate patients.

“So I’m going to be vague with my wording, purposefully,” said Yolanda Nicholson, director of clinical education at the North Carolina Agricultural and Technical State University health center, and chair for the coalition of Historically Black Colleges and Universities of the American College Health Association.

Nicholson thinks the concept of the senior send-off appointment in the student’s home state is a great one, given that college health centers in Texas and throughout the South have had to adjust their educational approach with students to be more general and “maybe not as specific or targeted as we would have previously done,” to stay aligned with local laws.

Out-of-state students are often shocked to discover they don’t have access to the same services as they do at home, she said.

This article is from a partnership that includes KQED, NPR, and KFF Health News.

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BOULDER, Colo. — Mad-scientist kind of moments happen fairly often for nanoengineer Carson Bruns. A few months ago in his lab at the University of Colorado-Boulder, he tested his latest invention on his own arm and asked a colleague for help.

“We were like, ‘OK, we’re going to tattoo ourselves. Can you help us today?’” he said.

The tattoo is like a freckle, a little blue dot. But he can turn it on and off. Like the way a mood ring changes color with temperature, this tattoo changes with light: Ultraviolet light to turn it on, daylight (or even a flashlight) to turn it off.

“You can go to court and turn it off, and then go to the party and turn it on. And then go to Grandma’s house and turn it off,” said Bruns, who is affiliated with the university’s ATLAS Institute, which prides itself on fostering out-of-the-box ideas.

Bruns started a company with tattoo-artist-to-the-stars Keith “Bang Bang” McCurdy, along with a former doctoral student. Early next year, they plan to release their first product, Magic Ink, to a group of handpicked artists. The business partners have long-term hopes for smart tattoos that have a health value, but cosmetics are cheaper and simpler to get to consumers than medical devices. So, that’s where they’re starting.

The new ink will enter a market in a moment of flux for the regulation of cosmetics. The FDA steps in to urge a recall if an ink causes a bacterial outbreak but traditionally has not exercised its regulatory might over tattoo ink products as it does with other products that go into the body. (Tattoo inks don’t even have to be sterile.) But following the Modernization of Cosmetics Regulation Act of 2022, the FDA is expanding its authority over tattoo manufacturers. The agency is now accepting comments on draft guidance about tattoo ink preparation.

“To be honest with you, I don’t think either the FDA or the tattoo ink industry really knows what that’s going to look like,” said John Swierk, a chemist at the State University of New York-Binghamton. But, he said, the law does mean “the FDA has a new charge to really ensure that labeling is correct and good manufacturing practices are being followed.”

Bruns said Magic Ink is made of particles of dye, encased in beads of plexiglass — the same polymethyl methacrylate material in those dermal fillers people use to plump their lips. Dermal fillers are FDA-approved, whereas tattoo ink contents can be like a black box.

Swierk said many of the tattoo pigments in use now have been around a long time, which gives some users a base comfort level about their safety. But a new material comes with new unknowns.

“If somebody is going to get tattooed with Magic Ink, they have to accept a degree of uncertainty about what the future is going to hold with that ink,” Swierk said.

Bruns recently received funding from the National Science Foundation, which he plans to use for probing which size and type of nanoparticles are less likely to irritate the immune system and more likely to stay put where they’re placed. The immune system has been known to haul off bits of tattoo ink to the lymph nodes, dyeing them blue and green.

While Magic Ink is a cool party trick, Bruns and his colleagues have made other inks that align with their bigger goal: to make tattoos helpful.

Bruns and his colleagues have made one that changes color when exposed to gamma radiation — envisioning it might someday work as a built-in exposure meter. Another ink shows up when it is time to put on sunscreen. He developed yet another ink intended to act as a permanent sunscreen. None of those are available to consumers, though the permanent sunscreen is furthest along. That ink has been tested in a small group of mice; the others have been tested on pigskin.

Bruns started a company, Hyprskn, a few years ago, when Bang Bang came across his work and suggested they team up.

The name Bang Bang might not ring a bell, but the tattoos he’s done are very public: They’re cascading down Rihanna, scattered across Miley Cyrus, and peering out from LeBron James, among others. Turns out, Bang Bang loves tech.

“I would like to wave my hand and pay with my AmEx, or walk up to my car and it knows it’s me,” he said. Or, he continued, maybe there could even be health applications — like alerting him if his blood sugar is high or low, just by looking at the color of his tattoos.

Scientifically, that is still way far off. If tattoo ink were to make the leap from cosmetics into the medical realm, it would require clearing all sorts of regulatory hoops.

“There’s a lot of steps between where we are today and getting a functional tattoo that’s going to tell you something about your health,” Swierk said. “A lot of steps.”

But Bang Bang thinks the product they’re taking preorders for is step one toward building a consumer base that would be open to tattooable tech.

The first product they’re offering to consumers is Magic Ink. It’s a lot like that blue freckle on Bruns’ arm, except it’s red. For now, that’s the only color available for purchase.

“That’s how you can excite people,” said Bang Bang. “It’s almost a Trojan horse into that new goal of how do we bridge the gap between tattoo and technology.”

It’s $100 for a half-ounce bottle. That’s a lot more than regular ink costs. If the product takes off, the University of Colorado-Boulder will also benefit, as it owns the intellectual property.

Bang Bang is among a few dozen people, many of them tattoo artists, who are already wearing the ink in their skin.

Tattoo artist Selina Medina has been in the business more than 20 years and used to work for an ink manufacturer. She spends a lot of time advocating for tattoo safety, volunteering with several national and international groups focused on the issue.

“I’d probably give it a year in the market before I would buy it. But it does look really interesting,” said Medina, who is on the board of directors for the Alliance of Professional Tattooists.

Medina hopes this ink is different from the UV inks she saw pop up in the 2000s, which would glow under a black light.

“It seemed like an awesome idea, but then we noticed that it faded really fast,” she said. “It would just disappear. We didn’t know what it did. We didn’t know where it went. And that was just kind of like, ‘What the hell is this stuff?’”

She expects her customers will be clamoring for Magic Ink before she’s ready to purchase it.

Looking further afield, some companies are already investing in technology embedded in the skin. A European company called DSruptive makes injectable thermometers. It said about 5,000 people — living primarily in Sweden, Japan, the U.S., and the United Kingdom — have had the devices installed. Ali Yetisen, an engineer at Imperial College London, said for companies eyeing tech embedded in the skin, diabetes is a big focus.

“That’s where the money is. Most companies invest in this area,” said Yetisen. The dream is to create something like a tattoo that could measure blood sugar in real time, and be long-lasting, he said.

“That’s the holy grail of all medical diagnostics,” he said.

While Bruns’ inventions sense external factors like light and radiation, for manufacturers looking to develop in-body tech that reacts to the blood, there are other scientific hurdles. The immune system forms little shells around foreign bodies, effectively putting up a wall between a sensor and the blood.

No one has really figured a way around that yet, said Yetisen, but a lot of people are trying.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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TAMPA, Fla. — If it weren’t for the traffic along South MacDill Avenue, Javonne Mansfield swears you could hear the sizzle of a frying pan.

The sun is scorching with such violent intensity that even weathered Floridians can’t help but take note. 

In a hard hat, Mansfield pushes a shovel into the earth. Heat radiates from the road, the concrete parking lots. It’s around 10:30 a.m., and his crew is starting a 10-hour shift fixing traffic lights in West Tampa. Cloud coverage is minimal — thin and wispy. There’s no greenery or trees to shield them, no refuge from the blistering sun.

“I can feel it,” Mansfield says, “like I’m cooking.”

A mile south, near Palma Ceia Golf and Country Club in South Tampa, Kiki Mercier walks a poodle mix along a row of stately homes. It’s the same city on the same July day, but here, the heat feels different.

Plush lawns spotted with children’s toys help absorb the sun’s rays. But it’s the dozens of live oak trees with sprawling branches that make the biggest difference to Mercier, who walks dogs for a living.

Here, it feels possible to be outside, protected by natural tunnels of shade.

As the climate warms, a person’s health and quality of life hinge, in part, on the block where they live or work. Green space and shade can be the difference between a child playing outside and being stuck inside on hot summer days, the difference between an elderly person fainting while waiting for a bus and boarding safely, the difference between a construction worker suffering heatstroke on the job and going home to their family.

Neighborhoods with more trees and green space stay cooler, while those coated with layers of asphalt swelter. Lower-income neighborhoods tend to be hottest, a city report found, and they have the least tree canopy.

The same is true in cities across the country, where poor and minority neighborhoods disproportionately suffer the consequences of rising temperatures. Research shows the temperatures in a single city, from Portland, Oregon, to Baltimore, can vary by up to 20 degrees. For a resident in a leafy suburb, a steamy summer day may feel uncomfortable. But for their friend a few neighborhoods over, it’s more than uncomfortable — it’s dangerous.

Last month was Tampa Bay’s hottest ever. As Americans brace for an increasing number of hot days and extreme weather events linked to climate change, medical professionals stress that rising heat will make health inequities worse.

“Heat affects quality of life,” said Cheryl Holder, co-founder and interim director of Florida Clinicians for Climate Action, a coalition of medical professionals that advocates for solutions to climate change. “It’s poor and vulnerable patients who are suffering.”

Now, cities like Tampa are trying to build heat resiliency into their infrastructure — including by boosting their tree canopy — all while experts warn of a public health threat growing more severe each year.

Unrelenting Heat

As a human body warms, sweat gathers and evaporates from the skin, transferring heat away and into the air.

But in Florida, humidity hangs like a blanket, making it harder for the body’s cooling system to work.

“The sweat just doesn’t evaporate, so you don’t lose heat as effectively,” said Patrick Mularoni, a sports medicine physician at Johns Hopkins All Children’s Hospital in St. Petersburg.

In these unrelenting summer months, doctors like Mularoni have seen up close the toll heat can take.

Muscle cramps and headaches. Fatigue. Heatstroke — which can be fatal.

Daily temperatures are one benchmark of heat’s impact, but factors like humidity, wind speed, and sun angle also affect the toll on the body.

The heat index, often called the “feels like” temperature, accounts for temperature plus the added burden of humidity. For instance, while the thermometer may read 91 degrees, the heat index means it can feel like 110 degrees. The National Weather Service defines any heat index of 105 degrees or higher as dangerous.

Between 1971 and 2000, Tampa saw about four days a year with a heat index greater than 105 degrees.

By 2036, that number is projected to jump to as many as 80 days a year.

Without extreme steps to reduce global temperatures, scientists predict, Tampa residents will experience 127 “dangerous” days annually by 2099 — more than a third of the calendar year.

When the body temperature goes up to 104 as a result of overheating, the body begins dysregulating and shutting down. Decreased blood flow to the organs can cause multisystem organ failure.

Without prompt intervention to lower the body temperature, according to the Centers for Disease Control and Prevention, heatstroke can be fatal.

This summer, heat waves have killed at least 13 people in Texas and one in Louisiana, where the heat index reached 115 degrees. In Arizona, at least 18 people have died, and 69 other deaths were being investigated for potential links to heat illness. Other Arizonans have been hospitalized for serious burn injuries after touching scalding concrete.

As far north as Maryland, a 52-year-old man died in July — the state’s first recorded heat-related death of the year.

And in Parkland, Florida, a 28-year-old farm worker died of heat exposure in January after he’d spent hours pulling weeds and propping up bell pepper plants. Investigators said his death was preventable. He’d recently moved from Mexico; it was his first day on the job.

In Tampa, a Shrinking Canopy

Last year was Tampa’s hottest to date.

The city’s average annual temperature has risen by 2.5 degrees since record-keeping began in 1891, according to the city’s Climate Action and Equity Plan.

All the while, a natural tool for reducing heat has been slowly disappearing. According to a 2021 study, tree canopy coverage in Tampa is at its lowest in 26 years.

Experts say vanishing tree cover coupled with hotter summers is a lethal combination.

The uneven distribution of trees — and therefore shade — means lower-income and Hispanic neighborhoods are more affected by heat, Tampa’s city report found.

MacFarlane Park, east of Tampa International Airport, ranks among the least shady areas of the city, according to the report. It has 21% canopy coverage, or nearly a third less than the city average.

Only 15% of East Ybor City and 18% of North Hyde Park benefit from tree cover. All these neighborhoods have gradually lost trees over the past few decades.

Many factors influence the shrinking canopy, the city’s analysis found, including the loss of old and dying trees and the removal of trees for construction. In some lower-income neighborhoods, residents have chosen to cut trees down because they can’t afford the upkeep, or because dangling branches pose a threat.

Some wealthier areas are seeing faster and more recent canopy loss as old trees die or are cut down, but their total tree cover is still double that of poorer neighborhoods.

On the upper end, the canopy of mansion-lined Bayshore Boulevard is not far behind those of a series of housing developments along Flatwoods Park in New Tampa, one of which hovers around 73% coverage.

Gray Gables, a neighborhood bordering West Kennedy Boulevard, lost the highest proportion of trees from 2016 to 2021, but canopy still covers 38% of its total area.

It’s not just shade the city is losing. Trees release water vapor, which helps cool people off. Each year, according to the city’s 2021 canopy study, Tampa’s trees remove 1,000 tons of air pollutants, capture the potential carbon dioxide emissions of 847 tanker trucks’ worth of gasoline, and reduce stormwater runoff equal to 850 Olympic swimming pools.

Natural shade also determines the paths people walk — or whether they walk at all — and how often their kids can play in the yard.

On a July day in West Tampa, a girl on a bike squints as she pedals, beads of sweat dripping from her brow. A woman pushing a stroller contorts her body while waiting for the bus, trying to make use of a strip of shade no wider than 6 inches, cast from a traffic pole.

Angela Morris stands in her sun-drenched driveway and rinses sandy beach toys with a hose. She’s layered in sunscreen, but in the blazing heat, her skin is already burning.

“It’s almost unbearable,” Morris says. Her kids — ages 2 and 5 — are inside.

Do they ever play outside in the summer?

“Never,” Morris says. “It’s a lot of younger families with kids who would benefit from some shade and a sidewalk.”

Data Deficiency Poses Problems

Heat-related deaths also prove difficult to track.

A doctor might code a fatal heart attack on an extremely hot day as a cardiovascular event without noting, for example, that heat likely exacerbated the condition.

“What often gets lost are the circumstances surrounding deaths and illness,” said Christopher Uejio, a Florida State University researcher who studies the effects of climate on health and has led data projects for cities around the country.

Extreme heat in the U.S. kills more people than hurricanes, floods, and tornadoes put together, according to the National Weather Service. It’s the country’s No. 1 weather-related cause of death.

About 67,500 emergency room visits and just over 9,000 hospitalizations across the U.S. each year are tied to heat, according to the CDC.

But those numbers account only for instances in which doctors specifically code the visit as a heat-related event.

Similarly, between 2004 and 2018, an average of only 702 heat-related deaths across the country were reported to the CDC.

“We know that’s a pretty gross underestimate,” said Uejio. “Our best scientific estimates are anywhere between 5,000 to 12,000 deaths in the United States due to conditions exacerbated by heat each year.”

Low reporting continues today, experts say.

Despite patchy reporting, it appears heat-related deaths are on the rise. Last year’s number of estimated deaths was more than double the number from a decade ago.

Medical schools must teach doctors to look for and document heat-related illness, said Holder, of Florida Clinicians for Climate Action. Her group has held lectures for students and doctors on topics like the effects of climate change on patients.

Holder said she has seen how heat exposure over time harms the predominantly low-income and minority patients she served in her community clinic in South Florida.

There was the elderly man who had signs of worsening kidney function on days when he worked long shifts selling fruit on hot Miami streets.

The mother whose asthma worsened as temperatures rose.

The Fort Lauderdale woman with chronic lung disease who was arrested for fighting with her daughter over a fan. She died three days after returning to her broiling apartment.

A More Resilient City

That the tree canopy is shrinking is no surprise to city officials. In April, Tampa Mayor Jane Castor set a goal of planting 30,000 trees by 2030.

Whit Remer, Tampa’s sustainability and resilience officer, said the target might be difficult to nail.

Remer said trees are competing for space in the right of way with sidewalks and utilities. Limited open land also poses a challenge. Tampa has no room for new parks, he said. Now, it’s about maximizing that finite green space.

“Planting trees has been the hardest thing that I have done as the city’s resilience officer,” Remer said.

Remer said he’s looking to other cities for solutions. In Phoenix, a “cool pavement” pilot program uses a water-based asphalt layer to reflect heat off roads. Last year, Miami-Dade County appointed the world’s first chief heat officer. Washington and Oregon have begun distributing thousands of air conditioning units to vulnerable residents and barred utility companies from cutting power to homes during heat waves.

Remer said Tampa is still in its “learning and listening” phase. Last year, the city was awarded $300,000 by the National Academies of Sciences, Engineering, and Medicine to develop a guide for understanding and fighting the effects of heat in East Tampa, a predominantly Black neighborhood, where at least a third of children live below the poverty line.

The project director is Taryn Sabia, an urban designer and associate dean at the University of South Florida who focuses on climate resiliency work, which spans hurricane preparedness, flooding, and, increasingly, extreme heat.

Planting trees is helpful, Sabia said, but they take time to grow and effort to maintain. Quicker actions could include erecting better shade structures at bus stops or implementing rules for construction to encourage the use of materials that generate less heat in the sun. For example, some cities in the Northeast — including Philadelphia and New York — provide financial incentives for “green roofs,” in which the top of a building is covered with plants.

Another easy step: painting everything white. Light colors reflect sunlight, while dark colors absorb heat.

And while Florida codes require homes to have a mechanism to provide heat in the winter, there are no codes requiring landlords to provide air conditioning.

“You can no longer be here and not have it,” Sabia said.

Tampa could better tailor weather advisories for specific needs and neighborhoods, she said. Heat becomes more dangerous more quickly on upper floors of older apartments, for example, because heat rises. Expanding access to cooling shelters is also key.

It’s the hottest week of the year so far in Tampa, and 75-year-old Benjamin Brown is walking home from the eye doctor, about a 30-minute walk.

There are few trees in sight, but Brown, who is without a car, makes a similar trek every day, running errands, visiting friends.

“It’s very oppressive. It does get to me,” Brown says as he nods, wipes his forehead, and continues down the street in the blistering Tampa sun.

Shade — any shade — would be a lifesaver, he said.

This article was produced in partnership with the Tampa Bay Times.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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KFF Health News senior Colorado correspondent Markian Hawryluk discussed how the community of Pueblo is pushing back against a nonprofit hospitals’ lack of charity care on Colorado Public Radio on Aug. 17.

• Click here to hear Hawryluk on Colorado Public Radio
• Read Hawryluk’s “Community With High Medical Debt Questions Its Hospitals’ Charity Spending”

KFF Health News former senior editor Andy Miller discussed PFAS, otherwise known as “forever chemicals,” on WUGA’s “The Georgia Health Report” on Aug. 18. Miller also discussed a KFF survey on weight loss drugs and health care fraud on WUGA’s “The Georgia Health Report” on Aug. 11 and Aug. 4, respectively.

• Click here to hear Miller on the Aug. 18 “The Georgia Health Report”
• Click here to hear Miller on the Aug. 11 “The Georgia Health Report”
• Click here to hear Miller on the Aug. 4 “The Georgia Health Report”
• Read Miller’s “EPA Action Boosts Grassroots Momentum to Reduce Toxic ‘Forever Chemicals’”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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This story can be republished for free (details).