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Updated: 4 hours 6 min ago

Grassroots College Networks Distribute Emergency Contraceptives on Campus

December 06, 2023

Limya Harvey and Cydney Mumford set up a folding table a few times a month on the University of Texas-San Antonio campus to give away kits containing emergency contraceptives, condoms, and lube, or menstrual products like tampons and pads. They typically bring 50 of each type of kit, and after just an hour or two everything is gone.

The 19-year-old sophomores — Harvey is enrolled at UTSA and Mumford at Northeast Lakeview College — founded the organization Black Book Sex Ed last spring. Their mission is to educate students and others in need about sexual health and connect them with free services and products packaged into kits they distribute on campus, in the community, and through their website.

“Both of us grew up rather lower-income,” Mumford said, “so there’s a soft spot as it relates to people who say, ‘Oh, I just don’t have it right now.’ That’s part of the reason we started doing this.”

Harvey and Mumford aren’t alone. A growing number of students on college campuses nationwide are stepping in to provide other students with free or low-cost emergency contraceptives, birth control, and menstrual products.

They are also pushing back against threats to their reproductive freedom since the U.S. Supreme Court’s Dobbs decision last year, which eliminated federal abortion protections.

Although emergency contraceptives are legal in every state, some policymakers worry that in states that ban or severely restrict abortion, access to emergency contraceptives and other types of birth control may erode because of people failing to distinguish between drugs that prevent pregnancy and medications used for abortions.

“Our requests for help have quadrupled since Dobbs,” said Kelly Cleland, the executive director of the American Society for Emergency Contraception, which provides toolkits and technical assistance to help students develop what are becoming known as peer-to-peer distribution networks. Those student networks provide emergency contraceptives and bring vending machines to their campuses that carry the medications and other personal health care products. The organization has worked with students at more than 200 campuses.

Many types of emergency contraceptive pills are available over the counter and without age restrictions. Students who distribute them are generally not putting themselves at legal risk, especially if they ensure the products are in their original packaging and haven’t expired and refrain from providing medical advice, Cleland said. It’s like giving a friend a Tylenol, one advocate explained.

“It’s really growing and a really interesting new route for people to get what they need in trusted ways, especially in Texas and other states where there are repercussions from the Dobbs decision,” said Mara Gandal-Powers, director of birth control access at the National Women’s Law Center.

Like those of many student groups, Harvey and Mumford’s kits contain products — emergency contraceptive pills, tampons, lube, etc. — donated by nonprofits and companies. Black Book Sex Ed accepts financial donations as well and uses the money to buy items at big-box stores.

The University of Texas-San Antonio didn’t respond to requests for comment.

Across the country, at Bowie State University in Maryland, a graduate student took a different approach to improving student access to contraceptives.

What started as a class project last year for Jakeya Johnson’s master’s degree program in public administration and policy, eventually became state law.

Starting next year, the measure will require many Maryland public colleges to provide round-the-clock access to emergency contraception and develop a comprehensive plan to ensure students have access to all FDA-approved forms of birth control, plus abortion services.

As part of her project, Johnson, 28, started researching the availability of reproductive health care at Bowie State, and she quickly learned that options were somewhat limited. When she called the health center, she was told that emergency contraception was available only to students who went through counseling first and that, while the college prescribed birth control, there was no pharmacy on campus where students could fill their prescriptions. She proposed that the school install a vending machine stocked with emergency contraceptives, condoms, pregnancy tests, and other sexual health products. But college officials told her they didn’t have money for the machines. Her research showed that students at other colleges in Maryland faced similar roadblocks.

So, Johnson approached state Delegate Ariana Kelly, now a state senator, about introducing a bill that would require schools to provide access to emergency contraceptives and other contraceptive services.

The bill, which was signed in May, requires the schools to provide the services by August 2024.

“There was definitely some pushback” from conservative legislators during the process, Johnson said. Although the final bill didn’t include requirements for transportation services or school reporting that Johnson wanted, she was heartened by the amount of support the bill received from parents and students.

In the spring, Johnson received a public service fellowship from the University System of Maryland that has enabled her to work with her student health center to develop a blueprint for Bowie State that other schools can follow, she said.

“It’s something that in 2023 we shouldn’t have to be fighting for,” she said.” We should already have it.”

“The legislation was confirmation and affirmation of the direction we were headed anyway,” said Michele Richardson, director of the Henry Wise Wellness Center at Bowie State. She noted that the school is in the process of bringing to campus wellness vending machines, which will be installed by August.

But increasing access is more challenging elsewhere.

At Loyola University Chicago, a Jesuit college, members of the organization Students for Reproductive Justice aren’t permitted to host events on campus or reserve space in meeting rooms. The Loyola for Life group, which opposes abortion, faces no such restrictions.

While Loyola “welcomes an open exchange of ideas,” only registered student organizations that are “congruent with our values as a Jesuit, Catholic institution” can submit activity requests or reserve space on campus, said Matthew McDermott, a spokesperson for the university.

Oral contraceptives are provided only to students who need them for reasons unrelated to preventing pregnancy, and resident advisers are not permitted to distribute condoms or other forms of birth control.

“That’s where Students for Reproductive Justice comes in,” said Andi Beaudouin, 21, who for the past two years has overseen the group’s distribution of free emergency contraception. “We were like, ‘If the university isn’t going to do it then we will.’ Everyone deserves this and we don’t need to feel embarrassed or hesitant about getting the resources that we need.”

Beaudouin and other volunteers take orders for emergency contraception by email. They package pills with two pregnancy tests and some pads and liners in case of bleeding and hand off the kits to students either on campus or nearby. In the past two years, they’ve filled orders for more than 100 kits.

When the Supreme Court ruled in Dobbs, the number of requests skyrocketed, Beaudouin said. The group posted on Instagram pleading with students not to stockpile pills, because its supplies were very limited.

“People understood, but I felt really bad about it,” they said. (Beaudouin uses the pronoun they.)

Beaudouin doesn’t think university officials know that the reproductive health group distributes emergency contraceptives on campus. And Loyola for Life has picketed their off-campus condom distribution events, but it has gotten better since the reproductive health group asked them to stop, Beaudouin said.

Loyola for Life didn’t respond to a request for comment.

The national anti-abortion group Students for Life of America wouldn’t object to students distributing free pregnancy tests and menstrual products, said Kate Maloney, manager of the group’s Campaign for Abortion Free Cities. But they would object to distribution of emergency contraception, which they claim is an abortion-causing drug.

Still, the reproductive justice groups shouldn’t be prohibited from operating on campus, Maloney said. “We’re not going to say whether a group should be denied the right to exist,” she said, “because that has happened a lot to us.”

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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Doctors on (Video) Call: Rural Medics Get Long-Distance Help in Treating Man Gored by Bison

December 04, 2023

GANN VALLEY, S.D. — Rural medics who rescued rancher Jim Lutter after he was gored by a bison didn’t have much experience handling such severe wounds.

But the medics did have a doctor looking over their shoulders inside the ambulance as they rushed Lutter to a hospital.

The emergency medicine physician sat 140 miles away in a Sioux Falls, South Dakota, office building. She participated in the treatment via a video system recently installed in the ambulance.

“I firmly believe that Jim had the best care anyone has ever received in the back of a basic life support ambulance,” said Ed Konechne, a volunteer emergency medical technician with the Kimball Ambulance District.

The ambulance service received its video system through an initiative from the South Dakota Department of Health. The project, Telemedicine in Motion, helps medics across the state, especially in rural areas.

Telehealth became commonplace in clinics and patients’ homes during the covid-19 pandemic emergency, and the technology is starting to spread to ambulances. Similar programs recently launched in regions of Texas and Minnesota, but South Dakota officials say their partnership with Avel eCare — a Sioux Falls-based telehealth company — appears to be the nation’s only statewide effort.

Lutter, 67, and his wife, Cindy, are among the 12 residents of Gann Valley, a town just east of the Missouri River in central South Dakota. They operate a hunting lodge and ranch, where they raise more than 1,000 bison.

Last December, Lutter went to check on a sick bison calf. The animal was in the same pen as Bill, a 3-year-old bull that was like a family pet.

“We raised him from a tiny little calf, and I always told everybody he thinks I’m his mother. He just followed me everywhere,” Lutter recalled. Lutter climbed into the pen and saw Bill calmly walk toward him.

“What does Chuck Norris say? ‘Always expect the unexpected.’ Well, I didn’t do that. I didn’t expect the unexpected,” he said.

The bison suddenly hooked Lutter with his horns, repeatedly tossed him in the air, and then gored him in the groin. Lutter thought he was going to die but somehow escaped the pen and found himself on the ground, bleeding heavily.

“The red snow was just growing,” he said.

Lutter couldn’t reach his cellphone to call 911. But he managed to climb into a front-end loader, similar to a tractor, and drove a few miles to the house of his brother Lloyd.

Jim Lutter’s pain didn’t kick in until his brother pulled him out of the loader and into a minivan. Lloyd called 911 and began driving toward the ambulance base, about 18 miles away.

Rural ambulance services like the one in Kimball are difficult to sustain because insurance reimbursements from small patient volumes often aren’t enough to cover operating costs. And they’re largely staffed by dwindling ranks of aging volunteers.

That’s left 84% of rural counties in the U.S. with at least one “ambulance desert,” where people live more than 25 minutes from an ambulance station, according to a study by the Maine Rural Health Research Center.

Konechne, the volunteer medic, was working his regular job as a hardware store manager when a dispatcher came onto his portable radio with a call for help. He hustled two blocks to the Kimball fire station and hopped into the back of an ambulance, which another medic drove toward Gann Valley.

Lloyd Lutter and the ambulance driver both pulled over on the side of the country road once they saw each other coming from opposite directions.

“I opened the side door of the van where Jim was and just saw the look on his face,” Konechne said. “It’s a look I’ll never forget.”

Rural medics often have less training and experience than their urban counterparts, Konechne said. Speaking with a more experienced provider via video gives him peace of mind, especially in uncommon situations. Konechne said the Kimball ambulance service sees only about three patients a year with injuries as bad as Jim Lutter’s.

Katie DeJong was the emergency medicine physician at Avel eCare’s telehealth center who took the ambulance crew’s video call.

“What? A bison did what?” DeJong remembers thinking.

After speaking with the medics and viewing Lutter’s injuries, she realized the rancher had life-threatening injuries, especially to his airway. One of Lutter’s lungs had collapsed and his chest cavity was filled with air and blood.

DeJong called the emergency department at the hospital in Wessington Springs — 25 miles from Gann Valley — to let its staff know how to prepare. Get ready to insert a chest tube to clear the area around his lungs, she instructed. Get the X-ray machine ready. And have blood on standby in case Lutter needed a transfusion.

DeJong also arranged for a helicopter to fly Lutter from the rural hospital to a Sioux Falls medical center, where trauma specialists could treat his wounds.

Konechne said he was able to devote 100% of his time to Lutter since DeJong took care of taking notes, recording vital signs, and communicating with the hospitals.

Nurse practitioner Sara Cashman was working at the emergency department in Wessington Springs when she received the video call from DeJong.

“It was nice to have that warning so we could all mentally prepare,” Cashman said. “We could have the supplies that we needed ready, versus having to assess when the patient got there.”

A doctor inserted a tube into Lutter’s chest to drain the blood and air around his lungs. Medics then loaded him into the helicopter, which flew him to the Sioux Falls hospital where he was rushed into surgery. Lutter had a fractured collarbone, 16 broken ribs, a partially torn-off scalp, and a 4-inch-deep hole near his groin.

The rancher stayed in the hospital for about a week and compared his painful wound-packing regimen near his groin to the process of loading an old-fashioned rifle.

“That’s exactly what it was. Like packing a muzzleloader and you take a rod, let’s poke that in there,” Lutter said. “That was just a lot of fun.”

The video technology that helped save Lutter had only recently been installed in the ambulance after Telemedicine in Motion launched in fall 2022. The program is financed with $2.7 million from state funds and federal pandemic stimulus money.

The funding pays for Avel eCare employees to provide and install video equipment and teach medics how to use it. The company also employs remote health care professionals who are available 24/7.

So far, 75 of South Dakota’s 122 ambulance services have installed the technology, and an additional 18 plan to do so. The system has been used about 700 times so far.

Avel’s contract ends in April, but the company hopes the state will extend Telemedicine in Motion into a third year. Once the state funding ends, ambulance services will need to decide if they want to start paying for the video service on their own. Patients wouldn’t be charged extra for the video calls, said Jessica Gaikowski, a spokesperson for Avel eCare.

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.


This story can be republished for free (details).

Explosive DeSantis-Newsom Debate Reflects Nation’s Culture Wars

December 01, 2023

Fox News officially titled it “The Great Red vs. Blue State Debate.” But the faceoff quickly turned into a full-out political brawl between Gavin Newsom, California’s Democratic governor who isn’t running for president; and Ron DeSantis, the Florida Republican governor who is, and is not gaining ground against former President Donald Trump in voter polls.

The event was held in Alpharetta, Georgia, aired on Fox News, and moderated by Sean Hannity. Our PolitiFact partners examined the two state officials’ wide-ranging statements. You can read the full coverage here.

Newsom has relished taunting DeSantis on social media and Fox News and, earlier this year, he invited DeSantis to debate — arguing that the red-state policies DeSantis has passed are stripping Americans of their freedoms. DeSantis counters that he is the stronger defender of freedom, and has blasted California as “the petri dish for American leftism” and argues that “everything [President Joe] Biden is doing, they would accelerate.”

True to the event’s billing, the nation’s culture wars were front and center on the debate stage. DeSantis portrayed California as a failed state with rampant crime and homelessness led by an “elite” politician too liberal for the rest of the country. “They have failed because of his leftist ideology,” DeSantis said.

Newsom shot back, playing up California’s immense economy and describing his state as one without peer. He expressed his commitment to Biden’s reelection. He also called out DeSantis for his covid-19 policies, saying more Floridians died of covid due to his more relaxed public health rules: “Tens of thousands of people lost their lives and for what, Ron?”

Abortion was a clear flashpoint. Newsom defended California’s strong abortion protections and attacked DeSantis, alleging he “criminalizes” women and doctors. He also suggested that if DeSantis became president, he would further roll back abortion rights nationwide. Newsom, asked by Hannity if he would sign a law banning abortion later in pregnancy, argued that such cases are extremely rare.

“I trust the mother and her doctor to make that decision,” he said.

The two also sparred over book bans, parental rights, and policies regarding the LGBTQ+ community.

DeSantis criticized Newsom on California’s growing homelessness, which he said contributed to the “destruction of qualify of life” in the state.

Newsom pointed out that the crisis has been brewing for decades. He noted, though, that under his leadership, billions of dollars in taxpayer money has been directed toward countering homelessness. He also boasted about the state’s investments in mental health and addiction programs.

“The difference is I’m the first governor in California history to take this head-on,” Newsom said, arguing that under his policies 68,000 people have been moved off the streets and into shelter or housing.

Here are the health-related claims PolitiFact examined:

Covid-19 Lockdowns

Newsom borrowed a page from Trump’s playbook by misleadingly portraying DeSantis as a lockdown leader. Newsom’s comments focused on DeSantis’ actions in the pandemic’s first few weeks, when nearly all governors operated in lockstep. Newsom omits that DeSantis reopened earlier than most governors in spring 2020.

“You passed an emergency declaration before the state of California did,” Newsom said. “You closed down your beaches, your bars, your restaurants. It is a fact.”

Many local governments closed beaches for a limited time, but DeSantis did not close them statewide.

DeSantis issued an executive order on March 17, 2020, directing Floridians to “limit their gatherings” at beaches to no more than 10 people and to “support beach closures at the discretion of local authorities.”

He also ordered beaches in Broward and Palm Beach counties to close for 11 days, following recommendations from local officials and the Centers for Disease Control and Prevention. The governor’s refusal to close most beaches to spring break crowds drew heavy criticism and litigation.

Newsom was on firmer ground in his claim about closing bars. DeSantis ordered all bars and nightclubs closed for 30 days. Restaurants did not close. His March 17 order said restaurants were limited to 50% customer capacity and had to separate seating by 6 feet.

Governors nationwide issued multiple orders in March 2020 in response to the pandemic. DeSantis issued an order March 1 to establish covid response protocol and direct a public health emergency. On March 4, Newsom declared a state of emergency to help California prepare for the pandemic.

Florida’s Abortion Limits and DeSantis’ Abortion Survivor Story

As Hannity pressed Newsom on whether he supported any abortion restrictions, Newsom attacked Florida’s abortion laws.

“He signed a bill banning any exceptions for rape and incest,” Newsom said of DeSantis. “And then he said it didn’t go far enough and decided to sign a six-week ban … that criminalizes women and criminalizes doctors.”

DeSantis signed legislation in 2022 that outlawed abortions after 15 weeks of pregnancy. It does not make exceptions for cases of incest, rape or human trafficking but includes an exception for a mother’s life.

DeSantis signed a stricter bill in April that bans abortions after six weeks of pregnancy. Whether the law takes effect hinges on how the Florida Supreme Court rules in a lawsuit against the current 15-week ban. The 2023 law does contain exceptions, including to save a pregnant woman’s life or in cases of fatal fetal anomalies. Abortions for pregnancies involving rape, incest, or human trafficking would be allowed until 15 weeks of pregnancy if a woman has documentation such as a restraining order, police report, or medical record.

The law penalizes physicians, but whether it also criminalizes women is less clear, so we have rated a similar claim Half True. The law says that anyone who “actively participates in” an abortion commits a third-degree felony, which opens the door to prosecutors charging women, but we don’t yet know whether they will or how courts would respond to such charges. DeSantis has also said that he doesn’t want women prosecuted, only doctors.

Defending the law, DeSantis repeated an anecdote from the first GOP presidential debate about a Floridian named Penny Hopper. Miriam “Penny” Hopper is a real person, and an anti-abortion activist. Some of the details about her birth story have been called into question.

Hopper said she survived an abortion attempt in Florida in 1955. Her claim has been featured by anti-abortion groups and used to support what abortion opponents call “born alive” bills in state legislatures, which aim to protect infants who survive abortions, even though there are federal laws for that purpose.

In interviews, Hopper has said she had been delivered around 23 weeks of gestation after her mother went to a hospital in Wauchula, Florida, while experiencing bleeding. Hopper said the doctor induced labor, and she was born at 1 pound, 11 ounces, and that the doctor told staff to discard her “dead or alive.” She said her grandmother found her the next day on the hospital porch in a bedpan. Then, Hopper said, a nurse volunteered to take her to a larger hospital that was about 40 miles away.

That a baby born at 23 weeks could survive overnight without medical attention in 1955 is medically dubious, experts said. From the 1950s through 1980, “newborn death was virtually ensured” for infants born at or before 24 weeks of gestation, the American College of Obstetrics and Gynecology says on its website.

The Washington Post also reported that contemporaneous newspaper accounts offer a different scenario at the hospital, and said the staff spent days keeping her alive before arranging a police escort to rush her to another hospital.

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.


This story can be republished for free (details).

‘Forever Chemicals’ Found in Freshwater Fish, Yet Most States Don’t Warn Residents

December 01, 2023

Bill Eisenman has always fished.

“Growing up, we ate whatever we caught — catfish, carp, freshwater drum,” he said. “That was the only real source of fish in our diet as a family, and we ate a lot of it.”

Today, a branch of the Rouge River runs through Eisenman’s property in a suburb north of Detroit. But in recent years, he has been wary about a group of chemicals known as PFAS, also referred to as “forever chemicals,” which don’t break down quickly in the environment and accumulate in soil, water, fish, and our bodies.

The chemicals have spewed from manufacturing plants and landfills into local ecosystems, polluting surface water and groundwater, and the wildlife living there. And hundreds of military bases have been pinpointed as sources of PFAS chemicals leaching into nearby communities.

Researchers, anglers, and environmental activists nationwide worry about the staggering amount of PFAS found in freshwater fish. At least 17 states have issued PFAS-related fish consumption advisories, KFF Health News found, with some warning residents not to eat any fish caught in particular lakes or rivers because of dangerous levels of forever chemicals.

With no federal guidance, what is considered safe to eat varies significantly among states, most of which provide no regulation.

Eating a single serving of freshwater fish can be the equivalent of drinking water contaminated with high levels of PFAS for a month, according to a recent study from the Environmental Working Group, a research and advocacy organization that tracks PFAS. It’s an unsettling revelation, especially for rural, Indigenous, and low-income communities that depend on subsistence fishing. Fish remain a large part of cultural dishes, as well as an otherwise healthy source of protein and omega-3s.

“PFAS in freshwater fish is at such a concentration that for anyone consuming, even infrequently, it would likely be their major source of exposure over the course of the year,” said David Andrews, a co-author of the study and researcher at EWG. “We’re talking thousands of times higher than what’s typically seen in drinking water.”

Dianne Kopec, a researcher and faculty fellow at the University of Maine who studies PFAS and mercury in wildlife, warned that eating fish with high concentrations of PFAS may be more harmful than mercury, which long ago was found to be a neurotoxin most damaging to a developing fetus. The minimal risk level — an estimate of how much a person can eat, drink, or breathe daily without “detectable risk” to health — for PFOS, a common PFAS chemical, is 50 times as low as for methylmercury, the form of mercury that accumulates in fish, according to the federal Agency for Toxic Substances and Disease Registry. But she emphasized, “They’re both really nasty.”

Just like mercury, PFAS bioaccumulate up the food chain, so bigger fish, like largemouth bass, generally contain more chemicals than smaller fish. Mercury is more widespread in Maine, but Kopec said PFAS levels near contamination sources are concerningly high.

‘Fishing Is a Way of Life’

The Ecology Center, an environmental group in Michigan, educates anglers about consumption advisories and related health impacts. But Erica Bloom, its toxics campaign director, noted that for many people out on the river, “fishing is a way of life.”

Eisenman participated in an Ecology Center community-based study published this year, which tested fish from Michigan’s Huron and Rouge rivers for PFAS that poured out from auto and other industry contamination. Across 15 sites, anglers caught 100 fish samples from a dozen species, and what they found scared him.

“There were no sites that registered zero,” said Eisenman, noting that some had significantly higher levels of chemicals than others. “You need to make a value judgment. I’m going to still eat fish, but I don’t know if that’s a good thing.”

Last year, the National Academies of Sciences, Engineering, and Medicine published a sweeping federally funded report that associated PFAS exposure with health effects like decreased response to vaccines, cancer, and low birth weight.

There are thousands of PFAS, or perfluoroalkyl and polyfluoroalkyl substances, many of them used to make both household and industrial products stain-resistant or nonstick. They’re in fire-retardant foam used for decades by fire departments and the military, as well as in cookware, water-repellent clothing, carpets, food wrappers, and other consumer goods.

In late October, the EPA added hundreds of PFAS compounds to its list of “chemicals of special concern.” This will require manufacturers to report the presence of those PFAS chemicals in their products — even in small amounts or in mixtures — starting Jan. 1.

Sparse Testing Leaves Blind Spots

About 200 miles north of Detroit, in rural Oscoda, Michigan, state officials have warned against eating fish or deer caught or killed near the former Wurtsmith Air Force Base because of PFAS contamination.

“We have a 9-mile stretch of river system in which the state determined way back in 2012 that it wasn’t safe to even eat a single fish,” said Tony Spaniola, an advocate for communities affected by PFAS. He owns a home across a lake from the shuttered military site.

In Alaska, several lakes are designated catch and release only because of PFAS contamination from firefighting foam. A study by the U.S. Geological Survey and Pennsylvania Department of Environmental Protection released in August led to a warning to avoid eating fish from the Neshaminy Creek watershed.

Nationwide, use of firefighting foam and other PFAS-loaded products by the Department of Defense alone has led to the contamination of at least 359 military bases and communities that need to be cleaned up, with an additional 248 still under investigation as of June.

But many lakes and streams haven’t been tested for PFAS contamination, and researchers worry far more sites hold fish laced with high levels of PFAS.

Federal efforts to curb PFAS exposure have focused mostly on drinking water. Earlier this year, the EPA proposed the nation’s first PFAS drinking water standards, which would limit contamination from six types of chemicals, with levels for the two most common compounds, PFOA and PFOS, set at 4 parts per trillion.

But the EWG researchers found that one serving of fish can be equivalent to a month's worth of drinking water contaminated with 48 parts per trillion of PFOS.

Store-bought fish caught in the ocean, like imported Atlantic salmon and canned chunk tuna, appear to have lower PFAS levels, according to FDA research.

A biomonitoring project focused on the San Francisco Bay Area’s Asian and Pacific Islander community measured PFAS levels in the blood and found higher amounts of the compounds compared with national levels. The researchers also surveyed participants about their fish consumption and found that 56% of those who ate locally caught fish did so at least once a month.

Eating a fish’s fillet is often recommended, as it accumulates fewer chemicals than organs or eggs, but many participants reported eating other parts of the fish, too.

California is one of many states with no fish consumption advisories in place for PFAS. Jay Davis, senior scientist at the San Francisco Estuary Institute, said that’s in part because of “limited monitoring dollars” and a priority on legacy chemicals like PCBs as well as mercury left over in particularly high concentrations from gold and mercury mining.

Wesley Smith, a senior toxicologist with California’s Office of Environmental Health Hazard Assessment, said the state is reviewing the latest scientific literature but needs more data to develop an advisory that is “neither too restrictive nor too permissive.”

States like New Hampshire, Washington, Maine, and New Jersey have some of the most protective guidance, while other states, such as Maryland and Michigan, lag when it comes to designating fish unsafe to eat.

Advisory levels for at-risk groups — such as children and women of childbearing age — are usually lower, while “do not eat” thresholds for the general population range from 25.7 parts per billion in New Hampshire to 300 ppb in Michigan, 408 ppb in Maryland, and 800 ppb in Alabama.

“That’s wicked outdated to have levels that high and consider that safe for folks to eat,” said Kopec, the University of Maine researcher.

Though it is no longer made in the U.S., PFOS remains the most commonly found — and tested for — PFAS chemical in fish today.

The primary maker of PFOS, 3M, announced it would begin phasing the chemical out in 2000. This year, the company said it would pay at least $10.3 billion to settle a class-action lawsuit brought by public water system operators. But in July, attorneys general from 22 states asked the court to reject the settlement, saying it was insufficient to cover the damages.

The military first documented health concerns surrounding PFAS chemicals in the 1970s yet continued to use firefighting foam made with them. Mandated by Congress, the Defense Department was required to stop buying retardant containing PFAS by Oct. 1 and phase it out altogether by 2024. A recently published study linked testicular cancer among military personnel to PFOS.

Tackling Pollution at the Source

Pat Elder, an activist and director of the environmental advocacy group Military Poisons, has tested water for PFAS up and down the East Coast, including in Piscataway Creek, which drains from Joint Base Andrews, the home of Air Force One.

In 2021, after testing fish from Piscataway Creek, Maryland officials released the state’s sole PFAS fish consumption advisory to date. But Elder worries Maryland has not gone far enough to protect its residents.

“People eat the fish from this creek, and it creates an acute health hazard that no one seems to be paying attention to,” Elder said.

Since then, Maryland’s Department of the Environment has conducted more fish monitoring in water bodies near potential PFAS sources, as well as at spots regularly used by subsistence anglers, said spokesperson Jay Apperson. He added that the state plans to put out more advisories based on the results, though declined to give a timeline or share the locations.

Part of the challenge of getting the word out and setting location-specific consumption advisories is that contamination levels vary significantly from lake to lake, as well as species to species, said Brandon Reid, a toxicologist and the manager of Michigan’s Eat Safe Fish program.

Michigan set its screening values for fish consumption advisories in 2014, and the state is in the process of updating them within the next year, Reid said.

But to see the chemicals dip to healthier levels, the pollution needs to stop, too. There is hope: Andrews, the EWG researcher, compared EPA fish sample data from five years apart and found about a 30% drop on average in PFAS contamination.

Bloom has watched this cycle happen in the Huron River in southeastern Michigan, where PFAS chemicals upstream seeped into the water from a chrome plating facility. While the levels of PFAS in the water have slowly gone down, the chemicals remain, she said.

“It's very, very hard to completely clean up the entire river,” Bloom said. “If we don't tackle it at the source, we're going to just keep having to spend taxpayer money to clean it up and deal with fish advisories.”

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.


This story can be republished for free (details).

Desantis, Newsom to Tangle Over Hot-Button Health Issues

November 30, 2023

Florida’s Republican presidential hopeful, Ron DeSantis,and Democratic firebrand Gavin Newsom of California square off today in a contest of governors that can best be described as the debate to determine ¿quién es más macho? — who is more manly — about protecting your freedoms. 

Both men have led their respective states since 2019, and they’ve lately been engaged in an escalating feud. While Newsom isn’t running for president himself — yet — he’s a key surrogate for President Biden. Fox News is playing up the faceoff, which it’ll host, as “The Great Red Vs. Blue State Debate.” 

The Health 202 is a coproduction of The Washington Post and KFF Health News.

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The debate promises to put America’s culture wars front-and-center. Abortion. Homelessness. Transgender health care. The coronavirus pandemic response. Health coverage for undocumented immigrants. Even drag shows, DEI and Disney’s First Amendment rights.

Though conservative TV host Sean Hannity is moderating the 90-minute showdown in Alpharetta, Ga., seemingly a home-field advantage for DeSantis, Newsom is relishing the confrontation after goading Florida’s governor into going head-to-head. 

Both men use each other’s states as punching bags. DeSantis portrays Newsom as too liberal for America, presiding over a failed state where homelessness and crime are rampant, citizens are forced to mask up and get vaccinated, and access to abortion and public assistance like Medicaid is too easy, breaking society morally and financially.

In a fundraising video for his presidential campaign, DeSantis called California “the petri dish for American leftism,” adding that “everything Biden is doing — they would accelerate and they would cause this country to collapse. That is not the future that we need. Florida shows a model for revival, a model based on freedom.”

Newsom has blasted DeSantis as a “small pathetic man” and argues that small-d democracy itself is at stake in the presidential election. His political operation paid for an ad on Florida’s airwaves this year in which Newsom told Sunshine State residents: “Freedom — it’s under attack in your state.”

He has knocked DeSantis’s education policies that restrict teaching gender and sexuality to schoolchildren as well as laws the Florida governor pushed through the legislature banning abortion after six weeks and limiting gender transition-related health care. 

“Your Republican leaders, they’re banning books, making it harder to vote, restricting speech in classrooms,” Newsom said in his ad. “Even criminalizing women and doctors. Join us in California, where we still believe in freedom.”

Newsom’s health and education policies are largely the opposite of DeSantis’s. He’s expanded access to gender-affirming care for children and adults, and is expanding Medicaid beginning Jan. 1 to cover lower-income undocumented immigrants. Backed by the Democratic-controlled state legislature, Newsom led an effort in 2022 to enshrine the right to abortion in the state constitution, and he’s fought to block local school districts from restricting access to certain books.

While DeSantis directs resources to the presidential campaign, where he’s struggling to maintain his second-place standing in the GOP primary behind front-runner Donald Trump, Newsom struck again this month with another Florida ad buy, this time centered on reproductive health and abortion access. 

The ad alleges that DeSantis has criminalized doctors and women seeking an abortion after six weeks and argues that they could be arrested “by order of Governor Ron DeSantis.”

Both men face a monumental test in their debate. Newsom must demonstrate his loyalty to Biden, the Democratic Party leader and the actual candidate next November, while scoring points against DeSantis.

DeSantis, a wooden public speaker who struggles to connect with his audiences, has faced some criticism in Republican circles for a lackluster campaign. He’s got to persuade GOP voters that he’s a formidable option to Trump, without any major gaffes. 

The proxy battle could shape not only next year’s presidential contest, but the 2028 field of White House contenders as well.

One other hot-button issue we’re watching for is homelessness, considering nearly one-third of all homeless Americans live in California. Expect DeSantis to hammer Newsom over Californians fleeing for cheaper living elsewhere — including to Florida. Newsom, meanwhile, will play up the unprecedented investment he’s spearheaded to combat the humanitarian crisis (without clear results as of yet).

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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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GOP Presidential Hopefuls Use Trump’s Covid Record to Court Vaccine Skeptics

November 29, 2023

Former President Donald Trump often seems proud to advertise his administration’s record on speedily developing covid-19 vaccines.

On the campaign trail to win another term in the White House, though, he also has knocked the use of those very vaccines. In October, for example, he unleashed a barrage of social media attacks on Ron DeSantis’ pandemic record by reposting claims that the Florida governor — who is running against him in the Republican presidential primaries — was too active in vaccinating Sunshine State residents.

In a further twist, Trump simultaneously circulated an MSNBC article suggesting DeSantis wasn’t vaccinating his constituents enough.

Trump’s tap dance — touting Operation Warp Speed’s success at developing vaccines while criticizing vaccine use — is emblematic of how pandemic politics are intensifying broader vaccine politics. Republican presidential candidates currently trailing the former president in polls are contorting their messaging to court the party’s vaccine-skeptical voters. No one embraces, without qualification, the utility of a public health measure that has saved millions of lives.

Like Trump, even the more establishment candidates can’t seem to avoid embracing the anti-vaccine leanings of the party’s base. Take Nikki Haley, who formerly served as governor of South Carolina and ambassador to the United Nations and has been rising in the polls. In the waning days of the Trump administration, she was pro-vaccine. But by the end of November 2021, in an interview with the Christian Broadcasting Network, she repeated dubious anti-vaccine claims: for instance, that the vaccine could undermine a woman’s fertility. (Studies consistently show no effect.)

The GOP has gained the allegiance of “a minority of people who feel very strongly about the safety of vaccines,” Robert Blendon, a Harvard professor of public health, told KFF Health News. Presidential candidates are trying to use this sensibility as “a cultural issue” to signal distrust in scientists, other experts, and government authority in general, he said.

The resulting dynamic carries the risk of reaching beyond the current election cycle to affect public health policy in years to come, leading to lower rates among schoolchildren and seniors of vaccinations that protect them from measles, shingles, and HPV. Even as candidates try to weaponize this rhetoric, they’ve had little luck in changing the former president’s front-runner status.

A recent KFF survey of adults about their plans to get vaccinated against the flu, respiratory syncytial virus, known as RSV, and covid found that partisanship remains a key predictor of how people view vaccines. Confidence in the safety of the updated covid vaccines split sharply along party lines, with more than 8 in 10 Democrats saying they trust the new shots, compared with 1 in 3 Republicans.

But unease about covid or the vaccines is not Republican primary voters’ top issue — Blendon said concerns around the border, crime, and inflation are — and it’s not clear vaccine-focused attacks hurt Trump.

“I didn’t like his response to covid,” says an Iowa business owner featured in a critical ad from a well-funded political action committee that questioned Trump’s handling of the pandemic. “I thought he probably got led a little bit by the bureaucrats,” he says, hitting Trump on his bragging about the development of the vaccine and contrasting Trump unfavorably with certain governors the man in the ad thought performed better against covid. (Images of DeSantis, otherwise unnamed, flash by.)

The result? The ad “produced a backlash” and, when audience-tested with focus groups, improved the former president’s support, according to a memo summarizing the political action committee’s attempts to dent the front-runner.

Candidates nonetheless are trying to make hay, acknowledged Joe Grogan, who led the Domestic Policy Council during the Trump administration. But “I think people have a lot of other targets for ire about the pandemic.”

“Trump is not at the top of the list for Republican primary voters,” Grogan said. “He’s not on Page 2. Or 3, or 4. It begins with the media, the public health bureaucracy, or Big Tech companies.”

Voters have strong, yet divided and sometimes inconsistent, opinions. Some, like Joshua Sharff, 48, of Chesapeake, Virginia, are opposed to the covid vaccines and to candidates who support the shots as safe and effective. Sharff describes himself as a conservative voter who intends to support the Republican nominee for president. Though he’s vaccinated, he said, “If you’re a governor or a president and you tell me that I have to take a vaccine that has not been tried, that has not been tested, and ignores the science, that’s a problem for me. You’re taking away my freedoms as an American citizen.”

These positions have led Sharff away from Trump — and toward DeSantis, who has promoted anti-vaccine and anti-public health positions in his quest for the nomination.

Trump “pushed the vaccine very hard and recently came out, when he began to get pushback on it, that it was somebody else’s fault,” Sharff said. “That’s not true.”

Other Republican voters said the vaccine is not key to their vote.

“It will not sway my vote one way or another,” said Kimberly Hunt, 59, of Melville, Tennessee.

In chasing these voters, some candidates are distancing themselves from initial, pro-vaccine positions to embrace outspoken views against the shot. Vivek Ramaswamy, a biotech entrepreneur, started out as a vaccine cheerleader. But then he flipped, coming out against vaccine mandates and saying this summer that he regretted getting vaccinated. (His wife, a doctor, said she had no regrets.)

The most vocal of all is DeSantis.

Appearing on the right-leaning “PBD Podcast” on Oct. 30, DeSantis attacked Trump and “the corrupt medical swamp in D.C.” for overselling a vaccine that, despite the initial federal guidance, could not prevent infection or transmission of covid. The Centers for Disease Control and Prevention recommends the vaccine for anyone 6 months and older to protect against serious illness.

Though he initially encouraged people to get vaccinated in early 2021, DeSantis pivoted months later, banning vaccine passports for businesses and government entities, and later approving legislation prohibiting vaccine mandates in the state. That fall, he also appointed a new Florida surgeon general, physician Joseph Ladapo, whose guidance on covid vaccines contradicts CDC recommendations. DeSantis formed a Public Health Integrity Committee to assess, and generally dispute, federal health recommendations.

When the CDC released new vaccine guidance in September, Florida responded with its own advisory casting doubt on the safety of the boosters.

This anti-vaccine positioning hasn’t helped DeSantis. He has been losing support nationally and is generally polling third behind Haley and Trump in New Hampshire, a key early primary state. He headlined a “medical freedom” town hall in Manchester on Nov. 1 with Ladapo as a special guest.

Among the candidates remaining, DeSantis may be the most famous convert to the politics of anti-vaccination, but, with this subject, Haley has more experience.

In the 2021 CBN interview, she said “mandates are not what America does.” But the forceful declaration is merely the end of an ambivalent record, and, for critics, demonstrates her willingness to get in sync with the demands of the GOP base. As a state legislator, she supported 2007 legislation that included a mandate for HPV vaccines before voting against it; and later, as governor, she vetoed an effort to promote those vaccinations.

Bakari Sellers — now a commentator on CNN, but at the time a lawmaker who spearheaded that bill — told KFF Health News, “That’s the biggest Nikki Haley issue that there is: She kind of has her finger in the air.”

The issue of vaccines may affect the general election: Even as Trump defends his vaccine record, it’s nevertheless clear he has support from the anti-vaccine crowd. An analysis by Politico, for example, found overlap among donors to independent presidential candidate Robert F. Kennedy Jr., who is staunchly opposed to vaccines, and Trump.

The willingness among politicians to assail what’s traditionally looked on as a foundational achievement of public health is likely to lead to turbulence for doctors themselves. Allison Ferris, a primary care physician and an associate professor at Florida Atlantic University, said people should be listening to their doctors and not to presidential candidates about whether to take the new covid vaccines. But that message is hard to deliver in the current climate.

“It is a tricky position to be in,” said Ferris, who co-authored recently released guidance advising doctors to counsel patients that frequent covid vaccination will likely become a necessity.

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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‘Forever Chemicals’ in Thousands of Private Wells Near Military Sites, Study Finds

November 29, 2023

Water tests show nearly 3,000 private wells located near 63 active and former U.S. military bases are contaminated with “forever chemicals” at levels higher than what federal regulators consider safe for drinking.

According to the Environmental Working Group, a Washington, D.C.-based nonprofit that analyzed Department of Defense testing data, 2,805 wells spread across 29 states were contaminated with at least one of two types of per- and polyfluoroalkyl substances, or PFAS, above 4 parts per trillion, a limit proposed earlier this year by the Environmental Protection Agency. That new drinking water standard is expected to take effect by the end of the year.

But contamination in those wells was lower than the 70 parts per trillion threshold the Pentagon uses to trigger remediation.

EWG researchers said they did not know how many people rely on the wells for drinking, cooking, and bathing, but the 76 tested locations represent just a fraction of the private wells near 714 current or former military sites spread across the U.S. According to EWG, Texas had nearly a third of the contaminated wells, with 909. Researchers recorded clusters of tainted wells in both urban and rural areas, from Riverside County and Sacramento in California to Rapid City, South Dakota, and Helena, Montana.

“They are going to have to test more bases,” said Jared Hayes, a senior policy analyst with EWG, in an interview with KFF Health News. “Those 2,805 are going to be a small number when they start testing drinking water wells near every single base.”

Defense Department officials are investigating hundreds of current and former domestic U.S. military installations and communities that surround them to determine whether their soil, groundwater, or drinking water is contaminated with PFAS chemicals.

The Defense Department is a major contributor of PFAS pollution nationwide — the result of spills, dumping, or use of industrial solvents, firefighting foam, and other substances that contain what have been dubbed forever chemicals because they do not break down in the environment and can accumulate in the human body.

Exposure to PFAS has been associated with health problems such as decreased response to vaccines, some types of cancer, low birth weight, and high blood pressure during pregnancy, according to a report published last year by the National Academies of Sciences, Engineering, and Medicine.

A study published this year linked testicular cancer in military personnel to exposure to PFOS, the main type of PFAS chemical used in firefighting foam.

In July, a U.S. Geological Survey study estimated that at least 45% of U.S. tap water contains at least one type of PFAS chemical.

USGS researchers tested 716 locations nationwide and found the forever chemicals more frequently in samples that were collected near urban areas and potential sources of PFAS like military installations, airports, industrial sites, and wastewater treatment plants, according to Kelly Smalling, a USGS research chemist and lead author of the study.

“We knew we would find PFAS in tap water,” she told KFF Health News in July. “But what was really interesting was the similarities between the private wells and the public supply.”

Drinking water sources near military installations that test above 70 parts per trillion draw immediate action from the Defense Department. Those responses include providing alternate drinking water sources, treatment, or water filtration systems.

Below that threshold, federal officials leave it up to homeowners to weigh and mitigate the health risks of contamination, Hayes said.

“It’s unclear what, if anything, these private individuals are being advised,” Hayes said. “If DoD is saying that 70 parts per trillion is the level they are going to provide clean water … the understanding would be if it’s below that, it must be fine.”

The Pentagon bases its 70 parts per trillion standard for PFOS and PFOA chemicals on a 2016 health advisory issued by the EPA. Officials have said they’re waiting for the new federal standard to go into effect before changing Defense Department parameters.

The Department of Defense did not respond by publication deadline to questions about EWG’s findings, or how it will address the new EPA limits.

While EWG’s examination found that thousands of wells contained PFAS at levels above the new EPA standard, but below the military’s 70 ppt threshold for action, it also learned that the Defense Department had found 1,800 private wells that registered higher than 70 ppt and had provided mitigation services to the owners of those wells.

Hayes said the combined levels of PFOS and PFOA in some wells were as high as 10,000 ppt.

Hayes said it’s unclear how long people near those military sites have been drinking contaminated water. “Chances are it’s been years, decades,” he said.

Federal law requires public water systems to be monitored regularly for pollutants, but private wells have no similar requirements. Hayes recommended that people who live near any current or former military installations and use a well for their drinking water have their water tested and use a filter designed specifically to remove PFAS.

According to the Defense Department’s PFAS remediation website, as part of its ongoing investigation and remediation effort, it has closed contaminated wells, installed new water sources, and treated drinking water on military bases. According to the Pentagon, it is working “to ensure no one on-base is exposed to PFOS or PFOA in drinking water above 70ppt.”

“Addressing DoD’s PFAS releases is at the core of the Department’s commitment to protect the health and safety of its Service members, their families, the DoD civilian workforce, and the communities in which DoD serves,” Pentagon officials said on the site.

KFF Health News’ Hannah Norman contributed to this report.

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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She Once Advised the President on Aging Issues. Now, She’s Battling Serious Disability and Depression.

November 28, 2023

If you or someone you know is in crisis, please call the National Suicide Prevention Lifeline at 988 or contact the Crisis Text Line by texting HOME to 741741.

The GoFundMe request jumped out at me as I was scrolling through posts on LinkedIn.

Nora Super, executive director of the 2015 White House Conference on Aging and former director of the Milken Institute’s Center for the Future of Aging, was seeking contributions after suffering a severe spinal cord injury.

“Right now, I have no feeling below the waist. I need lots of equipment to go home from the hospital and live safely and independently,” she wrote in her appeal.

Since coping with disability — and the cost of coping with disability — is an enormously important issue for older adults, I wondered if Super would discuss her experiences and try to put them in perspective.

The Institute on Disability at the University of New Hampshire ran the numbers for me: About 19 million people 65 and older in the U.S. — a third of that age group — had some type of disability in 2021, the latest year for which data is available. This includes difficulty with hearing, vision, cognition, mobility, or activities such as bathing, dressing, or shopping.

Super agreed to talk to me, but her story was more complicated than I anticipated.

First, some context. Super, 59, has been open about her struggle with major depression, an issue she’s written about. In mid-June, after being fired from the Milken Institute, she began slipping into another depression — her fifth episode since 2005.

Super’s psychiatric medications weren’t working, she said, and she sought electroconvulsive therapy (ECT), which had been effective for her in the past. But mental health services are difficult to get in a timely way, and Super couldn’t get an ECT appointment until Aug. 7.

On July 30, convinced that her life had no value, she attempted to end it. This was the event that led to her injury.

After two weeks in intensive care and a recovery unit, Super was ready to leave the hospital. But no rehabilitation facility would take her because of her mental health crisis. Without psychiatrists on staff, they claimed they couldn’t ensure her safety, said Len Nichols, her husband.

Nichols, 70, has held several high-level health policy positions during his career, among them senior adviser for health policy at the Office of Management and Budget during the Clinton administration and director of the Center for Health Policy Research and Ethics at George Mason University. 

Using every contact he could, Nichols searched for a facility in New Orleans where Super could get intensive rehab services. During the pandemic, the couple had moved there from their longtime home in Arlington, Virginia. New Orleans is where Super grew up and three of her sisters live.

It took six days to get Super admitted to rehab. And that was just one of the challenges Nichols faced.

Over the next month, he prepared for Super’s return home, at considerable expense. An elevator was installed in the couple’s three-story home (their bedroom is on the second floor) for $38,000. A metal ramp at the home’s entry cost $4,000. A lift for their Jeep cost $6,500. A bathroom renovation came to $4,000. An electronic wheelchair-style device that can be used in the shower was another $4,000.

Super’s privately purchased insurance policy covered a wheelchair, bedside commode, hospital bed, and a Hoyer lift (a device that helps people transfer in and out of bed) with a small monthly copayment.

“It’s been surprising how much stuff I’ve needed and how much all of it costs,” Super admitted when we spoke on the phone.

“Even with all our education, resources, and connections, we have had a hard time making all the arrangements we’ve needed to make,” Nichols said. “I cannot imagine how people do this with none of those three things.”

He showered praise on the physical and occupational therapists who worked with Super at the rehab facility and taught him essential skills, such as how to move her from bed to her wheelchair without straining his back or damaging her skin.

“I don’t think I ever appreciated how essential their work is before this,” he told me. “They explain what you’ll be able to do for yourself and then they help you do it. They show you a pathway back to dignity and independence.”

Still, the transition home has been difficult. “In the hospital, nothing was expected of me, everything was done for me. In rehab, you’re very goal-oriented and there are still people to take care of you,” Super told me. “Then, you come home, and that structure is gone and things are harder than you thought.”

Fortunately, Nichols is healthy and able to handle hands-on caregiving. But he soon needed a break and the couple hired home-care workers for four hours a day, five days a week. That costs $120 daily, and Super’s long-term care insurance pays $100.

They’re lucky they can afford it. Medicare typically doesn’t pay for chronic help of this kind, and only about 7% of people 50 or older have long-term care insurance.

What does Super’s future look like? She isn’t sure. Physicians have said it could take a year to know whether she can recover function below her waist.

“I’m happy to be alive and to see how I can take where I’ve ended up and do something positive with it,” she said. “I still have a voice, and I can help people understand what it is to live with physical limitations in a way that I’ve never really understood before.”

Hopefully, this sense of purpose will sustain her. But it won’t be easy. After we spoke, Super became discouraged with her prospects for recovery and her mood turned dark again, her husband said.

“Knowing her, I believe that she will make it her mission to help others better understand the enormous and multiple challenges associated with the onset of a disability, and she will press for changes in our health system to improve the lives of families who have to deal with disabilities,” said Stuart Butler, a senior fellow at the Brookings Institution who has worked with Super in the past.

Persistent accessibility problems for people with disabilities are part of what Super wants to speak out about. “I live in an old city with sidewalks that are very uneven, and just getting down the street in my chair is a big hassle,” she said. “Finding parking where we can open the door fully and get me out is a challenge.” 

Nichols has been surprised by how many medical offices have no way of lifting Super from her wheelchair to the exam table. “The default is, they ask me, ‘Can you pick her up?’ It’s stunning how poorly prepared they are to help someone like Nora.”

Then, there are reactions Super encounters when she leaves the house. “Going down the street, people look at me and then they look away. It definitely feels different than when I was able-bodied. It makes me feel diminished,” Super said.

Nichols finds himself thinking back to something a neurosurgeon said on the day Super was injured and had her first operation. “He told me, ‘Look, there’s more damage than we thought, and she won’t be what she was. You’re not going to know for six to 12 months what’s possible. But I can tell you to do as much as you can as soon as you can to move on to a new normal. Millions of people have done it, and you can too.’”

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care, and advice you need in dealing with the health care system. Visit to submit your requests or tips.

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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‘Everybody in This Community Has a Gun’: How Oakland Lost Its Grip on Gun Violence

November 28, 2023

OAKLAND, Calif. — The red-tipped bullet pierces skin and melts into it, Javier Velasquez Lopez explains. The green-tipped bullet penetrates armored vests. And the hollow-tipped bullet expands as it tears through bodies.

At 19, Velasquez Lopez knows a lot about ammunition because many of his friends own guns, he said. They carry to defend themselves in East Oakland, where metal bars protect shop windows and churches stand behind tall, chain-link fences.

Some people even hide AR-15-style assault weapons down their pants legs, he said.

“It doesn’t feel safe. Wherever you’re at, you’re always anxious,” said Velasquez Lopez, who dreams of leaving the city where he was born. “You’re always wondering what’s going to happen.”

Last year, two gunmen in ski masks stormed his high school, killing a school district carpenter and injuring five other adults, including two students.

Oakland won acclaim just a few years ago as a national model for gun violence prevention, in part by bringing police and community groups together to target the small number of people suspected of driving the gun violence.

Then, in 2020, the covid-19 pandemic shut down schools, businesses, and critical social services nationwide, leaving many low-income people isolated and desperate — facing the loss of their jobs, homes, or both. The same year, police murdered George Floyd, a Black man in Minneapolis, which released pent-up fury over racial discrimination by law enforcement, education, and other institutions — sparking nationwide protests and calls to cut police funding.

In the midst of this racial reckoning and facing the threats of an unknown and deadly virus, Americans bought even more guns, forcing some cities, such as Raleigh, North Carolina; Chicago; New York City; and Oakland, to confront a new wave of violent crime.

“There was emotional damage. There was physical damage,” said James Jackson, CEO of Alameda Health System, whose Wilma Chan Highland Hospital Campus, a regional trauma center in Oakland, treated 502 gunshot victims last year, compared with 283 in 2019. “And I think some of this violence that we’re seeing is a manifestation of the damage that people experienced.”

Jackson is among a growing chorus of health experts who describe gun violence as a public health crisis that disproportionately affects Black and Hispanic residents in poor neighborhoods, the very people who disproportionately struggle with Type 2 diabetes and other preventable health conditions. Covid further eviscerated these communities, Jackson added.

While the pandemic has retreated, gun violence has not. Oaklanders, many of whom take pride in the ethnic diversity of their city, are overwhelmingly upset about the rise in violent crime — the shootings, thefts, and other street crimes. At town halls, City Council meetings, and protests, a broad cross-section of residents say they no longer feel safe.

Programs that worked a few years ago don’t seem to be making a dent now. City leaders are spending millions to hire more police officers and fund dozens of community initiatives, such as placing violence prevention teams at high schools to steer kids away from guns and crime.

Yet gun ownership in America is at a historic high, even in California, which gun control advocates say has the strictest gun laws in the country. More than 1 million Californians bought a gun during the first year of the pandemic, according to the latest data from the state attorney general.

As Alameda County District Attorney Pamela Price told an audience at a September town hall in East Oakland: “We are in a unique, crazy time where everybody in this community has a gun.”

The Streets of Oakland

Oakland’s flatlands southeast of downtown are the backdrop of most of the city’s shootings and murders.

The area stands in stark contrast to the extreme wealth of the millionaire homes that dot the Oakland Hills and the immaculate, flower-lined streets of downtown. The city’s revived waterfront, named after famed author and local hero Jack London, draws tourists to trendy restaurants.

On a Saturday night in August, Shawn Upshaw drove through the flatlands along International Boulevard, past the prostitutes who gather on nearly every corner for at least a mile, and into “hot spots,” where someone is shot nearly every weekend, he said.

“When I grew up, women and kids would get a pass. They wouldn’t get caught in the crossfire,” said Upshaw, 52, who was born and raised in Oakland. “But now women and kids get it, too.”

Upshaw works as a violence interrupter for the city’s Department of Violence Prevention, which coordinates with the police department and community organizations in a program called Ceasefire.

When there’s a shooting, the police department alerts Upshaw on his phone and he heads to the scene. He doesn’t wear a police uniform. He’s a civilian in street clothes: jeans and a black zip-up jacket. It makes him more approachable, he said, and he’s not there to place blame, but rather to offer help and services to survivors and bystanders.

The goal, he said, is to stop a retaliatory shooting by a rival gang or grieving family member.

Police also use crime data to approach people with gang affiliations or long criminal records who are likely to use a gun in a crime — or be shot. Community groups follow up with offers of job training, education, meals, and more.

“We tell them they’re on our radar and try to get them to recognize there are alternatives to street violence,” said Oakland Police Department Capt. Trevelyon Jones, head of Ceasefire. “We give them a safe way of backing out of a conflict while maintaining their street honor.”

Every Thursday at police headquarters, officers convene a “shooting review.” They team up with representatives from community groups to make house calls to victims and their relatives.

After the program launched in 2012, Oakland’s homicides plummeted and were down 39% in 2019, according to a report commissioned by the Oakland Police Department.

Then covid hit.

“You had primary care that became an issue. You had housing that became an issue. You had employment that became an issue,” said Maury Nation, an associate professor at Vanderbilt University. “It created a surplus of the people who fit that highest risk group, and that overwhelms something like Ceasefire.”

With ever-rising housing prices in Oakland and across California, homeless encampments have multiplied on sidewalks and under freeway bypasses. The city is also bracing for the loss of jobs and civic pride if the Oakland Athletics baseball team relocates after April 2024, following departures by the NBA’s Golden State Warriors in 2019 and the NFL’s Raiders in 2020.

“Housing, food insecurity, not having jobs that pay wages for folks, all can lead to violence and mental health issues,” said Sabrina Valadez-Rios, who works at the Freedom Community Clinic in Oakland and teaches a high school class for students who have experienced gun violence. Her father was fatally shot outside their Oakland home when she was a child. “We need to teach kids how to deal with trauma. Violence is not going to stop in Oakland.”

Shared with permission from The Trace.

Homicides in Oakland climbed to 123 people in 2021, police reports show, dipping slightly to 120 last year. Police have tallied 108 homicides as of Nov. 12 this year. Neither the police department nor the city provided statistics on how many of those killings involved firearms, despite repeated requests from KFF Health News.

Experts also blame the rise in killings in Oakland and other American cities on the prevalence of gun ownership in the U.S., which has more guns than people. For all the pandemic disruption worldwide, homicide rates didn’t go up in countries with strict gun laws, said Thomas Abt, director of the Center for the Study and Practice of Violence Reduction at the University of Maryland.

“We saw gun violence, homicides, shootings spike up all around the country. And interestingly, it did not happen internationally,” Abt said. “The pandemic did not lead to more violence in other nations.”

Unrest in Oakland

Oakland residents are angry. One by one, business owners, community organizers, church leaders, and teenagers have stood at town halls and City Council meetings this year with an alarming message: They no longer feel safe anywhere in their city — at any time.

“It’s not just a small number of people in the evening or nighttime. This is all hours, day and night,” said Noha Aboelata, founder of the Roots Community Health Center in Oakland. “Someone’s over here pushing a stroller and someone’s getting shot right next to them.”

One morning in early April, automatic gunfire erupted outside a Roots clinic. Patients and staff members dropped to the ground and took cover. After the shooting stopped, medical assistants and a doctor gave first aid to a man in his 20s who had been shot six times.

Everyone is blaming someone or something else for the bloodshed.

Business owners have had enough. In September, Target announced it would close nine stores in four states, including in Oakland because of organized retail theft; the famed Vietnamese restaurant Le Cheval shut its doors after 38 years, partly blaming car break-ins and other criminal activity for depressing its business; and more than 200 business owners staged an hours-long strike to protest the rise in crime.

The leadership of the local NAACP, the nation’s oldest civil rights organization, made headlines this summer when it said Oakland was seeing a “heyday” for criminals, and pointed to the area’s “failed leadership” and “movement to defund the police.”

“It feels like there’s a dark cloud over Oakland,” said Cynthia Adams, head of the local chapter, which has called on the city to hire 250 more police officers.

Price, a progressive elected last year, already faces a recall effort, in part because she rejects blanket enhanced sentences for gangs and weapons charges, and has declined to charge youths as adults.

The new mayor, Sheng Thao, was criticized for firing the police chief for misconduct and breaking a campaign promise to double funding at the city’s Department of Violence Prevention. In her first State of the City address last month, Thao described the surge in crime as “totally and completely unacceptable,” and acknowledged that Oaklanders are hurting and scared. She said the city has expanded police foot patrols and funded six new police academies, as well as boosted funding for violence prevention and affordable housing.

“Not a day goes by where I don’t wish I could just wave a magic wand and silence the gunfire,” Thao said.

Many in the community, including Valadez-Rios, advocate for broader investment in Oakland’s poorest neighborhoods over more law enforcement.

City councils, states, and the federal government are putting their faith in violence prevention programs, in some cases bankrolling them from nontraditional sources, such as the state-federal Medicaid health insurance program for low-income people.

Last month, California’s Democratic Gov. Gavin Newsom approved an 11% state tax on guns and ammunition, and $75 million of the revenue annually is expected to go to violence prevention programs.

Although these programs are growing in popularity, it is unclear how successful they are. In some cases, proven programs that involve law enforcement, such as Ceasefire, were cut back or shelved after George Floyd was murdered, said Abt, the Maryland researcher.

“The intense opposition to law enforcement means that the city was unwilling to use a portion of the tools that have been proven,” Abt said. “It’s good to work on preventing youth violence, but the vast majority of serious violence is perpetrated by adults.”

Not a day goes by where I don’t wish I could just wave a magic wand and silence the gunfire.

Oakland Mayor Sheng Thao

A Focus on Schools

Kentrell Killens, interim chief at the Oakland Department of Violence Prevention, acknowledges that young adults drive Oakland’s gun violence, not high school kids. But, he said, shootings on the streets affect children. Of the 171 homicides in 2019 and 2020, 4% of victims were 17 or under, while 59% were ages 18 to 34, according to the Oakland Police Department.

The number of children injured in nonfatal shootings is also worrisome, he said. Roughly 6% of victims and 14% of suspects in nonfatal shootings were 17 or younger in 2019 and 2020.

“We’ve seen the impact of violence on young people and how they have to make decisions around what roles they want to play,” said Killens, who spent a decade as a case manager working with schoolkids.

By being in the schools, “we can deal with the conflicts” that could spill into the community, he added.

At Fremont High School, Principal Nidya Baez has welcomed a three-person team to her campus to confront gun violence. One caseworker focuses on gun violence and another on sexual assaults and healthy relationships. The third is a social worker who connects students and their families to services.

They are part of a $2 million city pilot program created after the Oakland School Board eliminated school-based police in 2020 — about one month after George Floyd was killed and after a nine-year push by community activists to kick police out of schools.

“We’ve been at a lot of funerals, unfortunately, for gang-related stuff or targeting of kids, wrong-place-wrong-time kind of thing,” said Baez, whose father was shot and injured on his ice cream truck when she was a child.

When Francisco “Cisco” Cisneros, a violence interrupter from the nonprofit group Communities United for Restorative Youth Justice, arrived at Fremont in January, students were wary, he said. Many still are. Students are hard-wired not to share information — not to be a “snitch” — or open up about themselves or their home life, especially to an adult, Cisneros said. And they don’t want to talk to fellow students from another network, group, or gang.

“If we catch them at an early age, right now, we can change that mindset,” said Cisneros, who was born and raised in Oakland.

Cisneros pulls from his past to build a rapport with students. This summer, for example, when he overheard a student chatting on the phone to an uncle in jail, Cisneros asked about him. It turns out Cisneros and the boy’s uncle had grown up in the same neighborhood.

That was enough to begin a relationship between Cisneros and the student, “J,” who declined to be identified by his full name for fear of retribution. The 16-year-old credits Cisneros, whom he describes as “like a dad,” with keeping him engaged in school and employed with summer jobs — away from trouble. Still, he regularly worries about making a wrong move.

“You could do one thing and you could end up in a situation where your life is at risk,” J said in Cisneros’ office. “You go from being in school one day to being in a very bad, sticky situation.”

The program is underway in seven high schools, and Cisneros believes he has helped prevent a handful of conflicts from escalating into gun violence.

A Better Life

After his school counselor was shot at Rudsdale High School in September 2022, Velasquez Lopez heard that the man and other victims were treated at nearby Highland Hospital.

“Seeing him get hurt, he obviously needed medical attention,” Velasquez Lopez said. “That made it obvious I could help my community if I were to be a nurse to help people that live around my area.”

When a recruiter from the Alameda Health System came to campus to promote a six-week internship at Highland Hospital, Velasquez Lopez applied. It was, he said, a dramatic step for a student who had never cared about school or sought vocational training.

Over the summer, he volunteered in the emergency room, learned how to take a patient’s vitals, watched blood transfusions, and translated for Spanish-speaking patients.

Velasquez Lopez, who graduated this year, is now looking for ways to get a nursing degree. The cost of college is out of reach at the moment, but he knows he doesn’t want to stay in a city where you can easily buy a gun for $1,000 — or half that, if it’s been used in a crime.

Velasquez Lopez said he has bigger goals for himself.

Young people in East Oakland “always feel like we’re trapped in that community, and we can’t get out,” he said. “But I feel like we still have a chance to change our lives.”

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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Progressive and Anti-Abortion? New Group Plays Fast and Loose to Make Points

November 27, 2023

This summer pedestrians, drivers, and passengers in Washington, D.C., saw a new type of graffiti among the usual urban scrawls: anti-abortion advocacy designed to troll this ultra-blue city. On sidewalks, on bridge overpasses, and near Metro stations some people had stenciled or spray-painted missives like “Be Gay: Ban Abortion” and, in stylized lettering, “Abortion Is Murder.”

The messaging was likely a shock in Washington. The graffiti reflects part of a surprising segment of the ideological spectrum: anti-abortion using the language of the radical left.

One group on the vanguard of an increasingly confrontational anti-abortion movement is Progressive Anti-Abortion Uprising, which operates mostly in the nation’s capital. They ’ve embraced all types of media and a good dose of misinformation to communicate a smashmouth message. One member of the group, Caroline Smith, boasted that they want to make people “uncomfortable.” Their activities have also gotten several members convicted of trespassing and obstructing abortion clinics.

Demonstrations like these, which involve rowdy, obstructive protests livestreamed over the internet, have gotten more scrutiny, especially since the Supreme Court overturned the constitutional right to abortion. Since the beginning of the Biden administration, the Department of Justice has used the Freedom of Access to Clinic Entrances Act to protect access to abortion clinics. As of June, it had pursued FACE Act cases against 48 defendants nationwide, with allegations ranging from shooting pellet guns into facilities to simply locking the gates with super glue.

Graffiti also is part of PAAU’s strategy, with the group’s social media providing instruction on “decorating public space,” celebrating defacement as “culture jamming.” (The group’s founder, Terrisa Bukovinac, told KFF Health News in an interview that she did not “know anything about the specifics” about whether PAAU had done any anti-abortion graffitiing in Washington this summer.) The group’s no-holds-barred strategies include livestreamed protests with combative counterprotesters and passersby.

In recent years, the group and its allies have been featured in livestreamed videos, some of which show protesters shouting combustible, misleading claims that have been rejected by medical experts and others. These livestreams include bystanders, patients, clinicians, and abortion rights activists, who, once they are on the livestream, risk becoming the subject of online attack, whether they are associated with the abortion clinic or not.

“It’s a vector for doxxing and honestly would be foolish to think it’s anything other than an aggression tactic,” said Daly Barnett of the Electronic Frontier Foundation, a digital rights group, speaking generally of livestreams and other social media about protests at abortion clinics. Doxxing describes a form of online attack in which someone’s personal information is made public without permission.

PAAU’s Bukovinac left a San Francisco anti-abortion organization in 2021 to help create this unorthodox group. She and some of her colleagues wanted to find “a space for themselves” on the ideological spectrum. The group’s website boasts of “progressive feminist values of equality” and members’ willingness to put their bodies “in between the oppressor and the oppressed.” But the use of graphic anti-abortion rhetoric drew a cold reception from what Bukovinac called the “leftist” part of the pro-life movement.

A Curious Fit

Despite its otherwise progressive verbiage on inclusion and gay rights, the group mixes quite naturally into the right. Bukovinac, for instance, is a faculty member at the Leadership Institute, a conservative training group endorsed by the likes of Rep. Jim Jordan (R-Ohio). She also attended a Heritage Foundation gala at which Tucker Carlson spoke.

She blames liberals for this strange company. “It should be embarrassing that I have to rely on Christofascists to end a genocide,” she said.

Politically, it’s a dissonant fit, too. Despite having made clear to documentarians that she didn’t vote in the 2020 election, she recently declared a Democratic presidential run. In her view, that’s because anti-abortion Democrats are underrepresented. Citing data of unspecified provenance, she claimed in an interview that a quarter of Democrats identify as pro-life, and that a majority say they want more restrictions on abortion. She said she intends to show graphic anti-abortion television ads as part of her campaign.

Her campaign is an escalation of the group’s all-media tactics, which include livestreaming videos across the internet, accessible far and wide.

One livestream documented a 2020 blockade of a Washington, D.C., abortion clinic. It became a right-wing cause célèbre after several activists, including Lauren Handy, PAAU’s director of activism, entered the clinic, injuring a person while blockading the rooms, and livestreamed the whole thing — later earning an arrest, indictment, and conviction under the FACE Act. Right now, five of the 10, including Handy, are appealing; defense counsel Martin Cannon says it’s “likely” a total of nine will appeal after sentencing. In March 2022, police found the remains of five fetuses in Handy’s house, which she said came from the clinic via a medical waste driver. The transport company disputed her account.

The group has enlisted multiple anti-abortion members of Congress, who have pressed their case — about the fairness of the prosecutions — to the Department of Justice and Washington city officials. More broadly, some congressional Republicans are gearing up to repeal the FACE Act. Former GOP presidential candidate Sen. Tim Scott (R-S.C.) even complained during the first primary debate that prosecutors were pursuing anti-abortion activists.

Whatever their appeals to the right wing, the group and their allies are careful to appeal to the left too. Before their October 2020 blockade in Washington, organizers planned to present an aggressive — yet also multicultural, progressive — image, according to prosecutors’ filings in federal district court, on the FACE Act charges. “The idea of deliberately breaking the law is sexy,” advised Jonathan Darnel, an evangelical Christian activist, about their language advertising the event. Later another activist counseled making the language seem “more woke,” according to text messages obtained by the government and provided in a trial brief.

Livestreams: A Digital Megaphone

In real time, the nearly three-hour livestreamed videos had a more Christian, conservative bent, with protesters blockading and subsequently getting arrested and featuring speakers extolling religious themes and praising “anti-abortion, anti-Sodomite” activists. An internet broadcast like this “presents the potential for martyrdom,” said Mackenzie Quick, an assistant professor at Flagler College who has studied the rhetoric of anti-abortion movements. She thinks such streams might emerge as a common tactic for activists.

In the livestreamed videos, the protesters made typical anti-abortion claims in on-camera appearances, like that a fetus can feel pain at 12 weeks’ gestation, which the American College of Obstetricians and Gynecologists rejects.

The livestreams also employ a take-no-prisoners approach to identifying — or misidentifying — people who, whether intentionally or not, become part of the video. “This may be the abortionist,” Darnel said in the halls of the abortion clinic, of one potential target of the protest who walked in view of the camera. Then an offscreen speaker is heard telling him the person was an FBI agent.

At another point, Darnel speculated on the livestreamed video whether someone — it was unclear whom he was referring to — was a well-known, Washington, D.C.-based abortion rights activist. Then he changed his mind: “Oh wait, we don’t know — we don’t know who she is,” he said.

Darnel summarily dismissed any potential concerns with his behavior. In a message to KFF Health News, he asked, given his opposition to abortion, why would he “be concerned with the privacy of the murderers or the corrupted police who sought to protect those murderers?” Days later, asked about a different subject, he added that these concerns are raised only against anti-abortion protesters.

It’s not illegal in Washington, D.C., to film people in public without their consent, but the progressive anti-abortion types are “very media-oriented and they’re very noisy and aggressive,” said Megan S., who helps run a volunteer group that escorts patients to appointments. She and other clinic escort volunteers are very aware of the risks of being identifiable. (Megan S. withheld her last name to protect herself from such risks.)

Exposing or potentially misrepresenting identities became a thorny point during the trial on the October 2020 obstruction, at which both Darnel and Handy were defendants.

The proceedings were marked by multiple clashes pitting expression and publicity against protecting courtroom deliberations.

Some pro-life activists, who Bukovinac maintained were unaffiliated with the progressives, protested outside the courthouse when jury selection began.

Once the trial began, the conflicts continued, with the judge raising concerns that activists’ audible comments constituted witness tampering, Bukovinac said. The trial record showed the judge ultimately granted requests from prosecutors to shield witnesses’ identities and restrict the dissemination of discovery material to only the defense team members.

The defense also attempted to introduce photos and videos of fetuses and a video of the clinic’s doctor purportedly describing what he does to fetuses post-abortion, which counsel claimed would justify Handy’s belief that fetuses were born alive before being killed. But the judge ruled that the photos were “particularly incendiary.” She wrote that the defendants planned to mischaracterize the video, which she said was “propaganda.”

The case is set to get tested in the appeals court, where some anti-abortion advocates see an opportunity to undo the FACE Act, which was designed to regulate these made-for-social-media protests that have become a signature of PAAU.

That’s the hope of Cannon, senior counsel at the Thomas More Society, an anti-abortion public interest law firm representing one of the defendants. The law is questionably constitutional, despite its nearly 30-year history, he said. “We’re not tilting at windmills.”

If the courts won’t end the law, the activists’ next best hope may be their congressional allies. The Progressive Anti-Abortion Uprising has rebranded one of its social media accounts previously devoted to providing trial updates “#RepealFACE.”

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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Watch: A Nation in Transition

November 22, 2023

CBS Reports’ “A Nation in Transition” follows trans youth from three states where lawmakers have recently debated policies that would directly affect their lives: California, Tennessee, and Texas. More than two-thirds of states in the U.S. either passed or proposed laws restricting gender-affirming care during the 2023 legislative season.

In the documentary, KFF Health News editor-at-large for public health Céline Gounder discusses how families of transgender youth are uprooting their lives due to anti-trans policies and their ripple effects.

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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New Social Security Report Shows Growing Overpayment Problem Tops $23B

November 17, 2023

A new financial report released by the Social Security Administration this week shows that the scope of the agency’s overpayment problem has continued to grow.

As of Oct. 1, the SSA had an uncollected balance of $23 billion in overpayments — money the agency had determined it mistakenly paid to beneficiaries across the country but had not been able to claw back, despite repeated attempts to do so.

In September, a series of investigative reports by KFF Health News and Cox Media Group television stations first revealed the magnitude of the problem and shared the experiences of dozens of people who’ve received letters from the federal agency demanding repayment, sometimes in the tens of thousands of dollars. At the beginning of fiscal year 2023, the agency’s uncollected balance of overpayments was $21.6 billion.

Its latest “Agency Financial Report” also revealed that the SSA made approximately $11.1 billion in new overpayments to beneficiaries during federal fiscal year 2022, the most recent year of data available. That figure represents more than a 65% increase from overpayments made the previous year. For the past several years, the agency routinely distributed between $6 billion and $7 billion in new overpayments each year.

The report shows the majority of the 2022 overpayments occurred within the Old-Age, Survivors, and Disability Insurance (OASDI) programs, an estimated $6.5 billion. Those programs provide retirement and survivors’ benefits to qualified workers and their families, or support workers who become disabled and their families.

In prior years, most of the overpayments occurred within the Supplemental Security Income program, which provides financial support to aged, blind, and disabled adults and children who have limited income and resources. In 2022, overpayments within the SSI program topped $4.6 billion, which is similar to previous years.

The SSA had not yet responded to a request for an explanation of the significant increase in overpayments within OASDI.


The report said $1.6 billion of the OASDI overpayments and $287 million of the SSI overpayments were within the agency’s control, meaning they weren’t the beneficiaries’ fault.

In recent weeks, beneficiaries have told KFF Health News-Cox Media Group TV reporters they had no idea they were receiving too much money in their monthly checks until they received a letter from Social Security demanding repayment, often within 30 days.

“I almost threw up when I opened that letter,” said Lori, a Florida woman who didn’t want to publicly disclose her last name. She received a notice saying she owed $121,000, a debt she said was later erased following a multiyear fight with the SSA.

The notices often arrive years after the alleged overpayments occur and, by that time, the money owed can balloon to dollar amounts impossible for beneficiaries to repay.

“It’s just scary to my husband and me. Where are we supposed to come up with this money?” Ohio resident Tammy Eichler told WHIO-TV.

When beneficiaries can’t repay the money, the agency may lower their monthly benefit checks, even when the overpayments were the government’s fault. 

“Taking that benefit away from me will make me homeless,” Florida resident Jesse Greatorex told WFTV-TV.

SSA spokesperson Nicole Tiggemann said the SSA is required by law to attempt to recover overpayments once they are detected.

“We will be doing a top-to-bottom review to see how we can further reduce the error rate,” said SSA acting Commissioner Kilolo Kijakazi, who directed an agency-wide review of overpayment policies and procedures following the reporting by KFF Health News and Cox Media Group TV stations in September.

Members of the Social Security Subcommittee of the House Ways and Means Committee held a hearing in October, citing the joint reporting and demanding answers from Kijakazi regarding the number of people affected by overpayments and what the agency plans to do to address the problem.

A group of senators also wrote to Kijakazi asking about overpayments caused by government-issued stimulus checks during the covid-19 pandemic. KFF Health News and Cox Media Group TV stations profiled beneficiaries who believe the agency erroneously counted those payments against their asset limit, in violation of SSA policy.

Sen. Sherrod Brown (D-Ohio) and other members of Congress are considering several legislative changes that could make it easier for people to avoid overpayments: for example, raising the cap on how much money they’re allowed to save.

“I want [the legislation] to fix the people that it’s already happened to. I want it to stop it from happening in the future,” Brown told WHIO-TV.

Ohio resident Addie Arnold, who cares for her disabled niece and received a letter saying they owed the government more than $60,000, wrote to the SSA saying, “I truly do hope and pray that she is allowed to stay on SSI … because she has to continue to live and without it, she will be in a very bad place.”

“Social Security should be to help people, not to destroy them,” Arnold said.

Do you have an experience with Social Security overpayments you’d like to share? Click here to contact our reporting team.

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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Most States Ban Shackling Pregnant Women in Custody, Yet Many Report Being Restrained

November 17, 2023

Ashley Denney was about seven months pregnant in 2022 when police handcuffed her during an arrest in Carroll County, Georgia. Officers shackled her even though the state bans the use of restraints on pregnant women in custody beginning at the second trimester.

In early July, she said, it happened again.

“I asked the officer, ‘Please, pull over. I’m not supposed to be handcuffed. I’m pregnant,’” said Denney. At the time, she was near the end of her first trimester, though she believed her pregnancy was more advanced. Arresting officers did not know she was pregnant, said an official with the Carrollton Police Department who reviewed video footage of that arrest.

Medical groups, such as the American College of Obstetricians and Gynecologists, widely condemn shackling pregnant people, which they argue is unethical and unsafe because it increases the risk of falls, hinders medical care, and endangers the fetus.

About 40 states, including Georgia, have passed laws limiting the use of restraints such as handcuffs, leg restraints, and belly chains on pregnant people in law enforcement custody, according to a Johns Hopkins University research group. Laws that seek to improve treatment of pregnant women in jails and prisons have drawn bipartisan support, including the First Step Act, which was passed in 2018 and limits the use of restraints on pregnant people in federal custody. Yet advocates say they continue logging reports of law enforcement agencies and hospital staffers ignoring such prohibitions and allowing pregnant people to be chained, handcuffed, or otherwise restrained.

Confusion over the laws, lack of sanctions for violations, and wide loopholes are contributing to the continued shackling of pregnant women in custody. But it’s nearly impossible to get an accurate picture of the prevalence because of limited data collection and little independent oversight.

“People see laws like these, and they say ‘check.’ They don’t know how they are being implemented and if they are creating the outcomes intended,” said Ashley Lovell, co-director of the Alabama Prison Birth Project, a group that works with pregnant prisoners. Without oversight, these laws “are words on paper,” she said. “They don’t mean anything.”

U.S. jails admit 55,000 pregnant people each year, according to estimates based on 2017 data from research led by Carolyn Sufrin, a gynecology and obstetrics associate professor at Johns Hopkins University who researches pregnancy care in jails and prisons. “The fact that we don’t know what is happening is part of the story itself,” she said.

Yet reports of shackling continue to surface, often making local headlines.

In January, a Georgia woman, 32 weeks pregnant, was shackled for hours while waiting for a medical appointment and during transport, according to Pamela Winn, founder of RestoreHER US.America, a group that works with people entangled in the criminal justice system. The woman did not want to be identified because she is in state custody and fears retaliation. She said her handcuffs were removed only after a request from medical staffers.

Her experience was echoed by women nationwide in law enforcement custody.

Minnesota passed an anti-shackling bill in 2014, but six years later a suburban Minneapolis woman sued Hennepin County after a wrongful arrest during which she was shackled while in active labor — an incident first reported by local media.

And despite Texas’ shackling ban, in August 2022 an officer in Harris County, which includes Houston, chained Amy Growcock’s ankle to a bench in a courthouse holding area for hours.

“It was pretty painful,” said Growcock, who was eight months pregnant and worried about circulation being cut off in her swollen leg.

Prohibitions on shackling have run into the realities of the country’s complicated web of penal institutions. Millions of people are held in a system that includes thousands of county jails, state and federal prisons, and private facilities with varying policies. Facilities often operate with little or no independent oversight, said Corene Kendrick, deputy director of the ACLU National Prison Project.

Some ACLU chapters have been logging complaints about violations of state bans on shackling pregnant people in jails and prisons. It appears, from complaints and oversight reports, that officials are usually left to interpret the law and police their own behavior, said Kendrick.

The Georgia law bans restraining pregnant women in their second and third trimesters and allows restraints in certain circumstances immediately postpartum. The state Department of Corrections maintains an anti-shackling policy for pregnant people in state custody and requires violations to be reported. But agency officials, in response to records requests from KFF Health News, said there were no incident reports regarding shackling in 2022 and through late October.

The Georgia Sheriffs’ Association asks county jails to voluntarily submit data on shackling, but only 74 of the 142 jails sent reports in 2022. Those jails reported holding 1,016 pregnant women but only two inmates who were restrained in the immediate postpartum period.

Association officials contend that shackling is rare. “Our jail people have a lot of common sense and compassion and do not do something to intentionally hurt somebody,” said Bill Hallsworth, director of jail and court services for the association. Many rural jails don’t have medical staffers to immediately verify a pregnancy, he added.

The Carrollton Police Department, whose officers handcuffed Denney, maintain that the law didn’t apply during her arrest, before her booking into a facility, according to public information officer Sgt. Meredith Hoyle Browning.

“It sounds like, to me, that there has been wide interpretation of this bill by the people we are asking to enforce it,” said Georgia state Rep. Sharon Cooper, a Republican who authored the state’s bill. Cooper said she hadn’t been notified of any incidents but added that if pregnant incarcerated women are still being shackled, legislators may need to revise the law.

In addition, some incidents in which jailors shackle pregnant people fall into legal loopholes. In Texas, as in many other states, officers can make exceptions when they feel threatened or perceive a flight risk. Last year 111 pregnant women reported being restrained in jail, according to a Texas Commission on Jail Standards report in April. In more than half the cases, women were shackled during transport even though that’s when they are most likely to fall.

The Texas commission has sent memos to jails that violate the shackling policy, but documents reviewed by KFF Health News show the agency stopped short of issuing sanctions.

Most states don’t allocate funding to educate correctional officers and hospital staff members on the laws. More than 80% of perinatal nurses reported that the pregnant prisoners they care for were sometimes or always shackled, and the vast majority were unaware of laws around the use of restraints, as well as of a nurses association’s position against their use, according to a 2019 study.

Even when medical professionals object to restraints, they generally defer to law enforcement officials.

Southern Regional Medical Center, just south of Atlanta, handles pregnant incarcerated patients from the Georgia Department of Corrections, the Clayton County Jail, and other facilities, said Kimberly Golden-Benner, the hospital’s director of business development, marketing, and communications. She said clinicians request that officers remove restraints when pregnant incarcerated patients arrive at the center for labor and delivery. But it’s still at the officers’ discretion, she said.

The Clayton County Sheriff’s Office didn’t return a request for comment. The state Department of Corrections maintains a policy of limiting the use of restraints on pregnant incarcerated people to only extreme cases, such as when there is an imminent escape risk, said Joan Heath, public affairs director. All staff members at facilities for women are required to complete an annual training course that outlines the policy, she said.

Strengthening the laws will require funding for implementation, such as creating model policies for hospitals and law enforcement staffs; continuous training; tighter reporting requirements; and sanctions for violations, advocates say.

“The laws are a necessary step and draw attention to the issue,” said Sufrin, the Johns Hopkins professor. They are “by no means enough to ensure the practice doesn’t happen.”

Winn wants states to allow pregnant women to bond out of jail immediately and defer sentences until after they give birth. In Colorado a law took effect in August that encourages courts to consider alternative sentences for pregnant defendants. Florida lawmakers considered but did not pass a similar measure this year.

The use of restraints is a window into mistreatment that pregnant women face in jails and prisons.

Denney said that in August she was mistakenly given medication for depression and anxiety instead of nausea; her morning sickness worsened, and she missed a meal.

The medical staff doesn’t have a record of Denney being given the wrong medication, said Brad Robinson, chief deputy of the Carroll County Sheriff’s Office.

“They don’t take you seriously,” Denney said of the pregnancy care she has received while incarcerated. “They should at least make sure the babies are all right.”

Growcock said her initial shackling in Houston was the first sign that officers weren’t equipped to handle pregnant people. She gave birth in a jail cell and nearly lost her son less than two weeks after her arrest. The Texas Commission on Jail Standards acknowledged that Growcock, who photographed her ankle in restraints, had been shackled. But the jail overseer admitted no other wrongdoing in her case, according to a memo the commission sent to the Harris County Jail.

“I felt like if I wasn’t getting treated right already, then the whole experience was going to be bad,” she said. “And it was.”

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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It’s Getting Harder to Find Long-Term Residential Behavioral Health Treatment for Kids

November 16, 2023

HELENA, Mont. — Connie MacDonald works for the State Department at the U.S. consulate in Jeddah, Saudi Arabia. It’s a dream job, and she loved living abroad with her two sons.

But earlier this year, MacDonald said, her 8-year-old son started to become aggressive. At first the family thought it was ADHD. Her son was indeed eventually diagnosed with attention-deficit/hyperactivity disorder — as well as disruptive mood dysregulation disorder, which makes it difficult for her son to control his emotions, particularly anger.

“He was hurting me. He was threatening to kill his brother. One of the last straws was they had four people at school holding him down for almost an hour trying to calm him down,” she said.

The American International School of Jeddah told her that her son couldn’t come back. His behavior was so severe that MacDonald started to look for residential treatment back in the U.S.

She found Intermountain Residential in Montana. Children in the Intermountain program learn to build healthy relationships through intense behavioral therapy over the course of up to 18 months.

Intermountain Residential is one of the only facilities in the U.S. that serves young children with emotional dysregulation, like her son.

MacDonald remembers crying hysterically when she dropped him off in June, but tears gave way to hope as his violent outbursts decreased over the weeks and months afterward.

“Now when we have our weekly calls, it’s very normal. It’s like talking to your child again. It’s wonderful,” she said.

Intermountain is one of about a dozen programs in the nation that provide long-term behavioral health treatment for kids under 10, according to the National Association of Therapeutic Schools and Programs. It’s one of the only options for kids as young as 4.

Intermountain is tucked away in a quiet neighborhood in Helena and has been treating children for over 100 years. The children Intermountain treats have emotional disorders, behavioral issues stemming from mental illness or trauma, and other issues. They struggle with self-harm, severe depression, or violent outbursts that can lead to attacking other people or animals. Most families that come to Intermountain have tried medication, outpatient therapy, or even short-term residential treatment, all without success.

Long-term treatment programs like the one Intermountain offers are often a last resort for families.

It can take months before kids with severe mental and behavioral health issues feel safe enough to open up to Intermountain staff, said Meegan Bryce, who manages the residential program. Some kids have been traumatized or abused while adults were supposed to be caring for them, she said. Living through that can leave them deeply scared of or resistant to adult interaction, even once they’re living in a safe environment. Bryce said that Intermountain staff have to gain a patient’s trust before working to figure out the root cause of the child’s behavior. It takes time before they can make an effective long-term treatment plan based on intensive behavioral therapy and building healthy relationships.

Intermountain parents and staff were shocked when the facility announced suddenly this summer that it would close its doors this fall, blaming staffing shortages.

Some parents threatened to sue. A law firm representing them argued in a September letter to Intermountain’s board that it has a contractual responsibility to finish treating children who remain at its residential facility.

Intermountain then reversed course, saying it would downsize in an attempt to keep the program open. But spokesperson Erin Benedict said it’s no guarantee Intermountain can keep its doors open long-term. Intermountain plans to decrease its capacity from 32 beds to eight.

Megan Stokes, until recently executive director of NATSAP, thinks staffing shortages are not the full story of Intermountain’s troubles.

“We are seeing a lot of long-term facilities moving to what they call the short-term, intensive outpatient. You’re able to get insurance money easier,” she explained. Stokes said she knows of 11 long-term programs for kids 14 and younger that have shifted to offering only shorter stays, of 30 to 90 days.

Short-term programs are cheaper and insurance companies will pay for them more quickly, Stokes said. Over the course of a year, short-term programs can treat more patients than long-term residential facilities. That can make them more lucrative to run.

But those programs aren’t likely to help kids who might have to leave Intermountain. In fact, short-term programs could cause them harm.

“The problem is if that kid bombs out of that shorter-term stay, or they do well and maybe six months down the road they don’t have the tools in their toolkit to continue that, and now you’re labeled as treatment-resistant, when that kid wasn’t treatment-resistant,” Stokes said.

Kids labeled treatment-resistant can then be rejected from other short-term programs.

For now, parents of kids at Intermountain are looking for other treatment options because of the uncertainty over whether Intermountain will remain open. Parents told NPR and KFF Health News they’ve had to sign up for waitlists that can take a year or longer to clear for the few programs that take kids 10 and younger. That’s if they can find facilities that would accept their kids at all.

Stacy Ballard hasn’t been able to find a facility willing to treat her 10-year-old adoptive son with reactive attachment disorder who is currently at Intermountain. The condition can make it hard for kids to form an attachment with their family. Ballard said her son can be extremely violent.

“He was walking around our house at night thinking about killing all of us, and he said it was almost nightly that he was doing that,” Ballard explained.

Facilities that treat children his age generally won’t treat kids with a reactive attachment disorder diagnosis, which often is associated with severe emotional and behavioral problems.

MacDonald also can’t find another facility that could be a backup option for her son. He was supposed to complete 14 more months of treatment at Intermountain.

She said she can’t gamble on keeping her son at Intermountain because of the uncertainty over whether it will remain open.

So, she’s getting ready to leave Jeddah and fly back to the U.S., taking a leave of absence from her job.

“I’ll take him to my family’s place in South Carolina until I can find another place for him,” she said.

This article is from a partnership that includes MTPR, 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.


This story can be republished for free (details).

Legisladores de Texas, Florida y otros estados socavan esfuerzos de vacunación contra covid

November 15, 2023

Katherine Wells quiere pedirle a su comunidad de Lubbock, Texas, que se vacune contra covid. “Eso podría salvar a muchas personas de enfermarse gravemente”, afirmó Wells, directora de salud pública de la ciudad.

Pero no puede.

Una norma agregada al presupuesto de Texas, que entró en vigencia el 1 de septiembre, prohíbe a los departamentos de salud y otras organizaciones financiadas por el gobierno estatal anunciar, recomendar o incluso enumerar las vacunas contra covid por sí mismas.

La norma permite que “las clínicas informen a los pacientes que las vacunas contra covid-19 están disponibles si no se las destaca de otras vacunas”.

Texas no es el único estado que restringe la conversación pública sobre estas vacunas. La página de internet del Departamento de Salud de Tennessee, por ejemplo, ofrece información sobre la gripe, el vapeo y la detección del cáncer, pero omite hablar de covid y de las vacunas. Florida es un caso extremo: su Departamento de Salud ha emitido directrices contra estas vacunas que van en contra de los estudios científicos y los consejos de los Centros para el Control y Prevención de Enfermedades (CDC).

El cambio en la información sobre salud sigue la retórica de políticos, principalmente republicanos, que han dado marcha atrás en sus posturas sobre las vacunas de covid.

La feroz oposición a medidas como el uso de máscaras y el cierre de negocios, al principio de la pandemia, alimentó la desconfianza hacia los CDC y otras instituciones científicas, y a menudo coincide con líneas partidistas: el mes pasado, una encuesta de KFF reveló que el 84% de los demócratas confiaba en la seguridad de las vacunas contra covid, frente al 36% de los republicanos. Es un descenso drástico desde 2021, cuando dos tercios de los republicanos estaban vacunados.

Ante la llegada de las nuevas vacunas, algunas autoridades de salud actúan con cautela para evitar el rechazo del público y de los responsables políticos. Hasta el momento, la aceptación de las vacunas es baja: menos del 5% de los estadounidenses han recibido la vacuna actualizada, según el Departamento de Salud y Servicios Humanos (HHS). Wells teme que las consecuencias sean nefastas: “Veremos una enorme disparidad de los impactos en la salud debido a los cambios en el lenguaje”.

Un estudio publicado en julio descubrió que los republicanos y demócratas de Ohio y Florida morían en tasas más o menos similares antes de que aparecieran las vacunas de covid, pero la disparidad entre partidos creció una vez que las primeras vacunas estuvieron ampliamente disponibles en 2021 y la aceptación fue divergente. A finales de año, los republicanos tenían una tasa de exceso de muertes, un 43% más alta que los demócratas.

Las iniciativas de salud pública llevan tiempo creando polémicas: la fluoración del agua, el intercambio de agujas y la atención de salud universal, por nombrar algunas. Pero la pandemia agravó la situación, según los funcionarios de salud pública.

Más de 500 dejaron su trabajo bajo coacción en 2020 y 2021, y los legisladores de al menos 26 estados aprobaron leyes para impedir que funcionarios públicos establecieran políticas de salud. Trent Garner, senador republicano por Arkansas, dijo a KFF Health News en 2021: “Es hora de quitarles el poder a los llamados expertos”.

Al principio, los mandatos de vacunación fueron polémicos, pero las vacunas en sí no lo eran. Scott Rivkees, ex cirujano general de Florida, ahora en la Universidad Brown, sitúa el cambio en los meses después de que Joe Biden fuera elegido presidente.

Aunque el gobernador de Florida, Ron DeSantis, promovió inicialmente la vacunación contra covid, su postura cambió cuando la resistencia a las medidas sobre covid se convirtió en un elemento central de su campaña presidencial. A finales de 2021, nombró a Joseph Ladapo cirujano general. Para entonces, Ladapo había escrito artículos de opinión en The Wall Street  Journal en los que se mostraba escéptico con los consejos de la medicina tradicional, como uno en el que se preguntaba: “¿Son las vacunas de covid más arriesgadas de lo que se anuncia?”.

Con la introducción de las vacunas bivalentes el año pasado, la página web del Departamento de Salud de Florida eliminó la información sobre las vacunas de covid. En su lugar había normas contra los mandatos y detalles sobre cómo obtener exenciones de las vacunas. Luego, a principios de este año, el departamento desaconsejó vacunar a niños y adolescentes.

El consejo del estado cambió una vez más cuando los CDC recomendaron vacunas actualizadas contra covid en septiembre. DeSantis declaró, de manera incorrecta, que las vacunas “no habían demostrado ser seguras o eficaces”. Y el departamento de salud modificó sus orientaciones para decir que los hombres menores de 40 años no debían vacunarse porque el departamento había realizado investigaciones y consideraba inaceptable el riesgo de complicaciones cardíacas como la miocarditis.

El informe se refiere a un documento breve, y sin autor, publicado en Internet en lugar de en una revista científica, donde se habría comprobado su veracidad. El informe utiliza un método poco habitual para analizar los historiales médicos de los floridanos vacunados. Citando graves defectos, la mayoría de los demás investigadores lo califican de información errónea.

Estudios científicamente constatados, y la propia revisión de los CDC, contradicen la conclusión de Florida contra la vacunación. Se han dado casos de miocarditis a causa de vacunas con ARNm, pero son mucho menos frecuentes que los casos provocados por covid. Según un análisis publicado en una revista médica a partir de una revisión de otros 22 estudios, el riesgo es siete veces mayor por esta enfermedad que por las vacunas de ARNm.

Desde que dejó su cargo, Rivkees ha visto con estupor cómo el departamento estatal de salud quedaba condicionado por las intromisiones políticas.

Unos 28,700 niños y adultos desde el nacimiento hasta los 39 años han muerto de covid en Estados Unidos. El mensaje antivacunas de Florida afecta a personas de todas las edades, añadió Rivkees, no sólo a los más jóvenes.

Señaló que Florida se desempeñó bien en comparación con otros estados en 2020 y 2021, ocupando el puesto 38 en muertes por covid per cápita a pesar de tener una gran población de adultos mayores. Ahora tiene la sexta tasa más alta de muertes por covid del país.

“No hay duda de que el aumento de la desinformación y la politización de la respuesta han pasado factura a la salud pública”, dijo Rivkees.

Al igual que en Florida, el departamento de salud de Texas promovió inicialmente las vacunas contra covid, advirtiendo de que los tejanos que no estaban vacunados tenían 20 veces más probabilidades de sufrir una muerte asociada a covid.

Pero esta visión se desvaneció el año pasado, cuando los líderes estatales aprobaron políticas para bloquear los mandatos de vacunación y otras medidas de salud pública. La última es la prohibición del uso de fondos públicos para promover las vacunas contra covid. En Texas, la aceptación de la vacuna ya es baja, con menos del 4% de los residentes vacunados con el refuerzo bivalente que se puso en marcha el año pasado.

En el departamento de salud de Lubbock, Wells se las arregló para publicar un comunicado de prensa diciendo que la ciudad ofrece vacunas contra covid, pero se abstuvo de recomendarlas. “No podemos hacer tanta campaña como en otros estados”, afirmó.

Algunos funcionarios de salud han modificado sus recomendaciones, dada la presión en la que viven. Janet Hamilton, directora ejecutiva del Council of State and Territorial Epidemiologists, dijo que el consejo dejó claro que vacunarse contra covid funciona cuando la gente confía en la comunidad científica, pero se corre el riesgo de alejar a otros de todas las vacunas. “Es importante que la salud pública vaya al encuentro de todas las personas”, afirmó Hamilton.

El Departamento de Salud de Missouri adoptó esta táctica en X (ex Twitter): “Las vacunas de covid estarán disponibles en Missouri en breve… si te interesan estas cosas. Si no, ¡sigue mirando posteos!”.

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.


This story can be republished for free (details).

Adult Children Discuss the Trials of Caring for Their Aging Parents

November 14, 2023

It is emotionally and physically draining.”

Natasha Lazartes

39, Brooklyn, New YorkTherapist

I am 39 years old. I had to care for my father, who passed from cancer in 2019; my mother, who passed in November 2021 from cancer; and since my mother’s passing, I have inherited the care of my grandmother. She is 97, diagnosed with moderate dementia, and considered high risk to be left home alone. We had been applying for Medicaid long-term care to receive a home health aide since early November 2021. She finally got a home health aide in January 2022, but it’s been a nightmare. They are so desperate to hire workers that they will take anyone. She was left without an aide on many random days with a late-notice telephone call or text message from the aide needing the day off and the agencies not able to find a replacement in time. I have changed agencies multiple times. My husband has been a great support the entire time. We rely on security cameras we installed in our apartment to see how she is doing while we are at work. How is it on a daily basis? It is emotionally and physically draining. The health care system for the elderly is neglected, broken, and inadequate to meet any demands, even the basic needs.

When I signed the lease, I felt like I was breaking my promise.”

Robert Ingenito

44, Mamaroneck, New YorkPublic information officer

My father, who is now 93, had me late in life, at age 49. My mother died from cancer when I was 19. Literally on her deathbed, she said to me, “Don’t put your father in a nursing home.” Now, at 44, I’m married, I have a 6-year-old daughter, and for the past five years my dad has lived with us. I work about 20 hours a week, which allowed me to do something other than being his caregiver. If I had to put a price tag on the quality of care I provided to my dad, it would probably be the equivalent of a high-end assisted living facility. But it was becoming really hard for myself, my wife, and our daughter. His level of care was getting to the point of something I just could not sustain. He couldn’t be left alone. I wasn’t getting any sleep. Recently, I made the extremely difficult decision to move him into an assisted living facility. Fortunately, he has the financial resources to do that. For most people, that’s not even an option. I have been happy with the level of care that he’s getting, but when I signed the lease, I felt like I was breaking my promise. I tried my best to follow my mom’s wishes. But there’s only so much I could do, and I had to do it.

“I was a rebellious teen and she never gave up on me, so how am I going to give up on her?”

Karina Ortega

43, DallasCaregiver

My mother was diagnosed with Alzheimer’s in March 2020, but even before then, I knew something was wrong. One day, she went to visit a family friend and was going to donate some clothes to her. Seven hours later, we still hadn’t heard from her. She got lost. Eventually she found a supermarket that was familiar to her and got home. I’m no longer working at all. This has all taken a toll on my life. I do have a younger brother and an older sister, but my sister has a daughter in college and my brother has a 7-year-old. I’m the only one with no children and have always been the one who would take care of my parents. If Mom gets worse and I can’t care for her? That’s something I struggle with. Putting her in a home? In our culture, that’s looked down upon. I was a rebellious teen, and she never gave up on me, so how am I going to give up on her? I just can’t see it in me to leave my mom because she needs me.

“She passed in October. The state says we still owe close to $20,000 for the year Medicaid paid for her nursing home.”

Gay Glenn

61, Topeka, KansasActor

It was costing us $8,000 out-of-pocket to have people come into my mom’s house to help her, and that was only eight hours a day. I’m watching her savings just dwindle. And then she fell. And then she fell again overnight. At the hospital, they found she had a cracked sacrum. She was in rehab for the maximum number of days that Medicare will cover and couldn’t return home. Because she owned a house, had two rentals, savings, and two cars, she had to pay long-term care costs out of her pocket. I think my mom had about $18,000 in the bank. She had five life insurance policies in her children’s names. We cashed out the policies. In one year, she had to pay $65,000 for her care at the nursing home and spend down an additional $37,000 to be able to be eligible for Medicaid. We just sold her house. She passed in October. The state says we still owe close to $20,000 for the year Medicaid paid for her nursing home. I moved here in February of 2019. I certainly didn’t expect to be here going on five years. It was awful — personally all the time and energy and money to do this for her — and it was great. I was able to protect her and make sure everything was OK for her. I said at the memorial service that my mom was there when I took my first breath, and I was there when she took her last. If that’s not the circle of life, I don’t know what is.

“I’m going to take on some extra work to cover the costs.”

Bryan Ness

62, Angwin, CaliforniaBiology professor

We had it all planned. My mom was going to live with us. She has some cognitive issues from the stroke. All of her long-term memory is just fine. Her short-term memory is just nonexistent. We looked at what it would cost for home care. Even if we limited it to just eight hours a day, it’s more expensive than the assisted living place that’s 10 minutes from our house. It’s a wonderful little place. It’s $4,500 a month. That’s still a lot. She’s run out of her own money. There’s no more than the $1,500 she gets from Social Security. We talked to the place and got it down to $4,000. I got really good responses from GoFundMe. A lot of my former students and friends put in some chunks. I hate begging for money. My wife and I are at least at the age where we don’t have kids we’re supporting anymore. But we’re concerned we are going to hurt our own retirement savings. My wife is already 65. We need to keep our retirement plan going, too. They told us: Don’t ruin your own retirement over this. Well, agreed, but we’ve got to take care of my mom, too. We have a relative who’s giving $500 a month. I’m going to take on some extra work to cover the costs. I felt my career could wind down over the next few years, and now I’ve got an $1,800 bill added to my finances from now until whenever.

“I wish I had known that no one was going to help me.”

Stacey Wheeler

60, Greenville, South CarolinaRetiree

My mom was in independent living. I had someone coming in the morning to get her up. Nobody is getting paid enough to say: “Now, come on, you really want to get dressed. Let’s pick out some earrings.” I should have tried 20 people in hopes of finding one who did that. No one is going to waste time with an old person who doesn’t want to do what they don’t want to do. It’s hard to care about grumpy people when you’re barely putting food on the table. My mom got sick and then needed to be in a wheelchair in assisted living. When she sold her condo, she had about $2,500 a month in retirement and she had about $120,000 in the bank. That starts going fast when you hit $7,000 or $8,000 a month. Everyone’s so worried about being sued by people that every time something happened, they wanted her to go to the ER. I wish I had known that no one was going to help me. I would have kept her in independent living and gone through hiring people until I found one. My husband and I were both retired, fortunately. We couldn’t leave town. We tried twice and had to come back. Ironically, the last place she was in, because she was going to run out of money, was the best place. The room wasn’t as big, but the staff were the best there. Mom died in August 2022.

“They had to send her home with us and we had to keep her chemically sedated.”

Jeanette Landin

55, Brattleboro, VermontAssociate professor

There were wildfires where my mother lived out in California that were getting very close and were causing her health problems. Between that and a series of in-home falls and her inability to drive herself to different places, she finally called in November of 2017 and said, “I think I need to come live with you.” We found a house that would be adequate for both my family and her needs. Her dementia started to get worse. We looked at adult day care and found a local place. It was tremendously expensive to do that. But they were good until they got to a point where they contacted me and said she’s not following directions, she’s refusing to do appropriate hygiene. This was early 2022, and we had to pull her out of that service. In early April, she started getting violent and would threaten my husband that she was going to kill him by chopping his head off. And then she would tell me she was going to kill my daughters. One night I had her taken to the hospital and they found she had been in kidney failure. She was still very violent. They looked at placement in a nursing home. Because of the fact she was violent, she couldn’t be placed anywhere. They had to send her home with us, and we had to keep her chemically sedated. From the time she came home till the time she died, it was seven days. We kept our daughters from coming upstairs. We didn’t want them hearing and seeing what was happening because it’s not something I would wish anybody to ever go through. It was awful.

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.


This story can be republished for free (details).

How Lawmakers in Texas and Florida Undermine Covid Vaccination Efforts

November 13, 2023

Katherine Wells wants to urge her Lubbock, Texas, community to get vaccinated against covid-19. “That could really save people from severe illness,” said Wells, the city’s public health director.

But she can’t.

A rule added to Texas’ budget that went into effect Sept. 1 forbids health departments and other organizations funded by the state government to advertise, recommend, or even list covid vaccines alone. “Clinics may inform patients that COVID-19 vaccinations are available,” the rule allows, “if it is not being singled out from other vaccines.”

Texas isn’t the only state curtailing the public conversation about covid vaccines. Tennessee’s health department homepage, for example, features the flu, vaping, and cancer screening but leaves out covid and covid vaccines. Florida is an extreme case, where the health department has issued guidance against covid vaccines that runs counter to scientific studies and advice from the Centers for Disease Control and Prevention.

Notably, the shift in health information trails rhetoric from primarily Republican politicians who have reversed their positions on covid vaccines. Fierce opposition to measures like masking and business closures early in the pandemic fueled a mistrust of the CDC and other scientific institutions and often falls along party lines: Last month, a KFF poll found that 84% of Democrats said they were confident in the safety of covid vaccines, compared with 36% of Republicans. It’s a dramatic drop from 2021, when two-thirds of Republicans were vaccinated.

As new vaccines roll out ahead of the expected winter surge of covid, some health officials are treading carefully to avoid blowback from the public and policymakers. So far, vaccine uptake is low, with less than 5% of Americans receiving an updated shot, according to the Department of Health and Human Services. Wells fears the consequences will be dire: “We will see a huge disparity in health outcomes because of changes in language.”

A study published in July found that Republicans and Democrats in Ohio and Florida died at roughly similar rates before covid vaccines emerged, but a disparity between parties grew once the first vaccines were widely available in 2021 and uptake diverged. By year’s end, Republicans had a 43% higher rate of excess deaths than Democrats.

Public health initiatives have long been divisive — water fluoridation, needle exchanges, and universal health care, to name a few. But the pandemic turned up the volume to painful levels, public health officials say. More than 500 left their jobs under duress in 2020 and 2021, and legislators in at least 26 states passed laws to prevent public officials from setting health policies. Republican Arkansas state Sen. Trent Garner told KFF Health News in 2021, “It’s time to take the power away from the so-called experts.”

At first, vaccine mandates were contentious but the shots themselves were not. Scott Rivkees, Florida’s former surgeon general, now at Brown University, traces the shift to the months after Joe Biden was elected president. Though Florida Gov. Ron DeSantis initially promoted covid vaccination, his stance changed as resistance to covid measures became central to his presidential campaign. In late 2021, he appointed Joseph Ladapo surgeon general. By then, Ladapo had penned Wall Street Journal op-eds skeptical of mainstream medical advice, such as one asking, “Are Covid Vaccines Riskier Than Advertised?”

As bivalent boosters rolled out last year, the Florida health department’s homepage removed information on covid vaccines. In its place were rules against mandates and details on how to obtain vaccine exemptions. Then, early this year, the department advised against vaccinating children and teens.

The state’s advice changed once more when the CDC recommended updated covid vaccines in September. DeSantis incorrectly said the vaccines had “not been proven to be safe or effective.” And the health department amended its guidance to say men under age 40 should not be vaccinated because the department had conducted research and deemed the risk of heart complications like myocarditis unacceptable. It refers to a short, authorless document posted online rather than in a scientific journal where it would have been vetted for accuracy. The report uses an unusual method to analyze health records of vaccinated Floridians. Citing serious flaws, most other researchers call it misinformation.

Scientifically vetted studies, and the CDC’s own review, contradict Florida’s conclusion against vaccination. Cases of myocarditis following mRNA vaccines have occurred but are much less frequent than cases triggered by covid. The risk is sevenfold higher from the disease than from mRNA vaccines, according to an analysis published in a medical journal based on a review of 22 other studies.

Since leaving his post, Rivkees has been stunned to see the state health department subsumed by political meddling.

About 28,700 children and adults from birth to age 39 have died of covid in the United States. Florida’s anti-vaccine messaging affects people of all ages, Rivkees added, not just those who are younger.

He points out that Florida performed well compared with other states in 2020 and 2021, ranking 38th in covid deaths per capita despite a large population of older adults. Now it has the sixth-highest rate of covid deaths in the country.

“There is no question that the rise of misinformation and the politicization of the response has taken a toll on public health,” he said.

As in Florida, the Texas health department initially promoted covid vaccines, warning that Texans who weren’t vaccinated were about 20 times as likely to suffer a covid-associated death. Such sentiments faded last year, as state leaders passed policies to block vaccine mandates and other public health measures. The latest is a prohibition against the use of government funds to promote covid vaccines. Uptake in Texas is already low, with fewer than 4% of residents getting the bivalent booster that rolled out last year.

At Lubbock’s health department, Wells managed to put out a press release saying the city offers covid vaccines but stopped short of recommending them. “We aren’t able to do as big a push as other states,” she said.

Some health officials are altering their recommendations, given the current climate. Janet Hamilton, executive director at the Council of State and Territorial Epidemiologists, said clear-cut advice to get vaccinated against covid works when people trust the scientific establishment, but it risks driving others away from all vaccines. “It’s important for public health to meet people where they are,” Hamilton said.

Missouri’s health department took this tack on X, formerly known as Twitter: “COVID vaccines will be available in Missouri soon, if you’re in to that sort of thing. If not, just keep scrolling!”

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.


This story can be republished for free (details).