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Hollywood’s A-List Health Insurance Is Jeopardized by the Labor Strikes

Kaiser Health News:Insurance - September 07, 2023

The issues dominating the dual Hollywood strikes by actors and writers are artificial intelligence, residual payments, and job protections. But one topic that’s often a contentious point in labor negotiations — health insurance — has slipped under the radar.

A-list stars have been out in force snapping selfies on picket lines in the bright California sun, but it’s the people who may have never walked the red carpet who are forgoing a paycheck and potentially their health insurance as the negotiations drag on and work dries up.

The health insurance offered by both unions is predicated on the notion that it is for members who work consistently and lucratively enough to make a minimum amount of money. That makes the insurance difficult first to attain and then to sustain. In exchange, it is very, very good health insurance.

Often referred to in hushed, reverent tones as the “Cadillac of health insurance” by those who have it, the policy offered by the Writers Guild of America, formerly the Screen Writers Guild, feels like a holdover from a bygone age. It has no monthly premiums, costs $600 a year to cover the rest of your immediate family, and has deductibles in the hundreds — not thousands — of dollars.

But the biggest strike in more than six decades in Hollywood threatens that security. The WGA has been on strike since May 2, and the actors’ union, SAG-AFTRA, since mid-July. Together they represent over 170,000 workers, who have refused to perform any part of their job since talks with studios and streamers stalled. Writers and actors could lose their eligibility for insurance simply because they aren’t working while striking.

Filmmaker and Writers Guild member Susanna Fogel said no matter how good her union health insurance is, members are always at risk of losing it. “If we’re this close to not having it, then we’re already on a razor’s edge,” she said, “which is kind of why we’re striking, even though in the short term it sort of just shines a light on the problem.”

A Complicated Formula for Writers

For writers to qualify for health insurance, they must earn a little over $41,700 in covered union work within a year. Residuals don’t count. The income requirement continues to rise, which, coupled with the increasingly uncertain reliability of employment, means even experienced writers can have a hard time qualifying.

Writers can accumulate credits by qualifying for WGA health insurance for 10 years and by earning more than $100,000 in covered work. Top earners can rack up three points per year, which can be cashed in when writers experience a dry spell and can’t make the minimum income requirement, but health coverage ends the quarter after the credits are used up.

For example, a writer who qualifies for health insurance for 10 years but earns less than $100,000 can cash in all their points and continue their insurance for up to a year and a half if they are insuring only themselves.

But insuring dependents uses up more credits, meaning people with families have less of a stopgap to fall back on.

As the strike stretches into another quarter, many union writers are furtively calculating how many credits they have and how long this temporary measure will buy them, if they have credits at all.

Actors’ Good Deal Is Precarious

By contrast, residual payments do count toward the $26,000 per year that members of SAG-AFTRA must earn to qualify for health insurance offered by the actors’ union. So boosting residual payments, especially from streamers like Netflix, which can pay almost nothing, is a high priority for members on the margins.

Plan premiums from SAG-AFTRA are $125 a month for union members. For a family of four or more, the monthly cost rises to $249 a month, or $2,988 a year. That’s less than half of the $6,680 that the average California worker with employer-sponsored health insurance paid for coverage for a family of four in 2022, according to a report by the California Health Care Foundation. (KFF Health News produces California Healthline, an editorially independent service of the California Health Care Foundation.)

Members of both unions say it took them years to make enough money to qualify for the union health insurance, while other union members who have worked in the industry for years never have.

“The moments that I’ve been at risk of or have lost health insurance in the past, pre-strike, were when I was working,” said filmmaker Fogel, who is also a member of the Directors Guild of America. “I was working, but there were particulars to the work that just made it fall short or fall in the wrong month to stay covered. So it was just always a stress.”

Should the unions simply drop the income requirement to a lower amount so more members could qualify? Alex Winter, a longtime member of three industry unions, doesn’t think so.

“It seems draconian to turn back to the unions and say, ‘Well, since we have these oligarchs who are hoovering up all the profits, let’s try to take what few squirrel nuts we have and scatter them out amongst whoever survived staying in the industry,’ as opposed to fighting to get equitable pay, which is what we’re doing,” Winter said.

Both SAG-AFTRA and WGA were approached for interviews about their health insurance offerings. SAG-AFTRA declined to be interviewed and WGA sent LAist a link to its FAQ page.

SAG-AFTRA sent members a letter on Aug. 30 saying health insurance would be extended for certain members who would otherwise have lost eligibility on Oct. 1. Members who made at least $22,000 before the strike began will continue to get union health insurance through the end of the year.

A New California Law Could Help Strikers on the Margins

All California workers who lose their employer-sponsored health insurance may be eligible for the state’s Medicaid program, known as Medi-Cal, or qualify to buy health insurance through Covered California, where their costs could be low if they have minimal income. Still, it would be a disruption to lose their low-cost SAG-AFTRA or WGA plans, and an additional expense at a time when striking workers are making much less money.

Writers and actors who lose their union health insurance because of the strike could benefit from a new California law that took effect July 1 aimed at averting just that situation.

AB 2530 received $2 million in funding under the new state budget. To qualify, a union worker must first lose coverage as a result of the strike. According to Covered California spokesperson Craig Tomiyoshi, eligible workers will have their premiums covered as if their incomes were just above the Medicaid eligibility level.

Not all striking workers will enroll in a free plan. Striking workers will be able to pick plans that are more expensive than the benchmark plan. If they do, they will pay the difference in premiums.

“Covered California has seen fewer than 150 applicants who have identified an affiliation to WGA or SAG-AFTRA apply for coverage,” said spokesperson Kelly Green. She added that they expect to see more if the strikes continue and that people who anticipate losing their union health insurance should get in touch.

On Jan. 1, another new law kicks in. Covered California will end deductibles on the middle-tier benchmark plans, meaning a striking worker could receive free premiums under one law and no deductibles in the new year, if the labor dispute lasts that long.

These new rules don’t cover crew members who are not part of the striking unions but have lost health insurance due to the work stoppage.

A new mutual aid group was created to fill that gap.

The Union Solidarity Coalition, known by the acronym TUSC, has raised more than $315,000 to give assistance to International Alliance of Theatrical Stage Employees and Teamsters members, said founding member Winter.

“I don’t know anyone, honestly, in a lot of the primary crew areas who isn’t in danger of losing their health insurance, and I know a lot of people who have lost their health insurance,” Winter said.

The idea for the nonprofit began with conversations between crews and filmmakers, said Fogel, a fellow founding TUSC member.

“Because their coverage is based on the hours that they get within a certain window of time, some of the [crew members] mentioned they or people they knew were at risk for not making their hours due to productions shutting down, or if they opted not to cross a picket line, that could cost them their health insurance,” she said.

TUSC has partnered with the Motion Picture and Television Fund and its Entertainment Health Insurance Solutions, which acts as an insurance navigator for people in the industry.

Fogel said it’s about making sure that everyone in the industry has access to high-quality health care no matter the current industry conditions.

“Every so often, when there’s one group of people that are going on strike, and it’s our turn to strike right now, we just wanted to kind of let the other unions know that we consider ourselves to be part of a collective, and we hope that they feel that love from us,” Fogel said.

Could studios and streamers continue the industry members’ coverage? They could, but it’s unlikely because decision-makers are on the other side of the bargaining table.

Half of the trustees of the Motion Picture Industry Pension & Health Plans are represented by companies involved in the strike. The WGA’s strike FAQ tells members “there is no Health Fund requirement that the Health Plan extend health insurance coverage during a strike, and Trustees are 50% management and 50% Guild.”

In July, Matt Loeb, president of IATSE, the union that represents behind-the-scenes workers, called for studios and streamers to offer an extension of health care benefits to those who may lose them if they fall short of qualifying during the strikes. IATSE is not on strike.

“Make no mistake — if the studios truly cared about the economic fallout of their preemptive work slowdown … they could continue to pay crewmembers and fully fund their health care at any moment, as they did in 2020 during the onset of the COVID-19 pandemic,” Loeb wrote.

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

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

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Most States Have Yet to Permanently Fund 988. Call Centers Want Certainty.

Kaiser Health News:Health Industry - September 07, 2023

Since the National Suicide Prevention Lifeline transitioned a year ago to the three-digit crisis phone number 988, there has been a 33% increase in the number of calls, chats, and texts to the hotline.

But even with that early sign of success, the program’s financial future is shaky.

Over the past two years, the federal government has provided about $1 billion from the American Rescue Plan and Bipartisan Safer Communities acts to launch the number, designed as an alternative to 911 for those experiencing a mental health crisis. After that infusion runs out, it’s up to states to foot the bill for their call centers.

“We don’t know what Congress will allocate in the future,” said Danielle Bennett, a spokesperson for the federal Substance Abuse and Mental Health Services Administration, which oversees 988. “But the hope is that there will be continued strong bipartisan support for funding 988 at the level it needs to be funded at and that states will also create funding mechanisms that make sense for their states.”

Only eight states have enacted legislation to sustain 988 through phone fees, according to the National Alliance on Mental Illness, which is tracking state funding for the system. Others have budgeted short-term funding. But many predominantly rural states, where mental health services are in short supply and suicide rates are often higher than in more urban states, have not made long-term plans to provide support.

According to a KFF analysis of Lifeline data, since last summer 988 has received almost 5 million contacts, including calls, texts, and chat messages. And state programs managed to answer a high percentage of 988 calls instead of routing them to call centers elsewhere.

Mental health advocates and state 988 operators say that to keep those in-state staffers answering phones, promises of long-term funding are critical.

In the earlier version of the National Suicide Prevention Lifeline, “call centers, basically, were not paid,” said Chuck Ingoglia, president and CEO of the National Council for Mental Wellbeing, which advocates for sustained investment in 988. “There is a growing recognition that we’re making it easier for people to contact and, therefore, we need to build more infrastructure.”

In Ohio, where data from spring 2023 shows local operators responded to 88% of calls, lawmakers recently acknowledged the need for stable funding. In July, Republican Gov. Mike DeWine approved $46.5 million for 988 in the state’s biennial budget. But that support will last only two years.

“It is still not the most secure form of funding that we would hope for,” said Brian Stroh, CEO and medical director of Netcare Access, a call center that serves four rural counties on Ohio’s eastern border. “What if we turned the tables a little bit and said we’re only going to fund 911 a little bit at a time? That’s a really hard proposition to work under.”

SAMHSA, which distributes 988 grant funding, likens the number to 911 except that it is strictly for mental health crises. The law that mandated 988’s creation, the National Suicide Hotline Designation Act of 2020, allows states to install phone surcharges to support 988 indefinitely, similar to the funding structure for 911.

Stroh said that, while he is “pretty pleased” with how the first year of 988 went for Netcare Access, with short-term funding it’s hard to reassure prospective call operators of job security or compete with rising wages in other industries.

For Kristin McCloud, executive director of Pathways of Central Ohio, a call center that also responds to rural counties in the eastern part of the state, the $573,056 her center received in 988’s first year was exactly what it needed. She had money for training staffers to answer crisis calls and supplying them with computers for remote work.

During that time, operators answered 2,316 calls — almost double the previous year’s volume.

“I really feel like, for once, we were given adequate funding,” said McCloud, who has worked in social services more than 35 years.

According to SAMHSA, before 988 grants, most call centers received minimal federal funding to answer Lifeline calls, typically between $2,500 and $5,000 annually.

Like Stroh, McCloud views Ohio’s recent allocation as positive but hopes the state installs a permanent funding plan. A bill pending in the legislature would add a surcharge to phone bills to help fund 988, as a few other states have done.

All but one of the eastern counties that Pathways of Central Ohio and Netcare Access serve are designated by the state’s Department of Health Primary Care Office as mental health professional shortage areas.

In North Dakota, where almost every county is rural and has such a designation, a single call center manages the state’s 988 program.

That center, FirstLink, has seen a significant increase in mental health crisis calls since the transition to 988. Comparing the first six months of 2023 to the first of 2022 alone, calls have increased 55%, according to Jeremy Brown, outreach director.

The demand has “helped us with sparking conversations with our state legislature about funding and support,” he said.

In May, Republican Gov. Doug Burgum approved a one-time $1.86 million appropriation to 988 in the state’s biennial budget.

Brown said the funding will not only allow FirstLink to train staff members and keep phone lines updated, but it will also help human service centers support mobile crisis units that can be dispatched to callers if necessary.

Though mobile crisis unit dispatch is an option, FirstLink prefers to deescalate crises over the phone, said Dallas Tufty, one of FirstLink’s operators.

“The only time that we’ll really call for rescue or something is if that person is in immediate, imminent danger of their life,” they said.

Tufty works 40 hours a week at FirstLink, at least six of those spent answering calls and messages to 988. Operators like Tufty also answer FirstLink’s 211 line, another program that provides health and social service assistance information to callers. It’s not an emergency line, but on occasion people in crisis call there instead of 988.

No matter which line a call comes through, Tufty said, the hard part is not knowing what happens once the call is over.

“There’s times where you don’t really know if they’re going to call back because they need to again,” they said. “Even if you make a plan, there’s only so much we can do on the phone to hold people to those plans.”

While North Dakota and Ohio fund 988 through their state budgets, not all states do. In Montana, Republican Gov. Greg Gianforte recently dedicated $300 million to the behavioral health and developmental disabilities systems that, among other uses, can fund “ opportunities for Montanans to receive integrated physical and behavioral health care,” according to the bill authorizing the money. But the state has yet to address 988 funding specifically.

In 2021, Montana lawmakers declined to advance a bill that would have established a phone fee and corresponding revenue account to fund 988 ahead of its launch.

At this point, “if it is able to be funded in the budget, without new legislation, that’s just fine with us,” said Matt Kuntz, executive director of Montana’s chapter of the National Alliance on Mental Illness. “We just want to make sure that it’s sustainably funded, because it is an important service.”

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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Cozy Images of Plush Toys and Blankets Counter Messaging on Safe Infant Sleep

Kaiser Health News:States - September 06, 2023

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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Even in the Most Depressed County in America, Stigma Around Mental Illness Persists

Kaiser Health News:Health Industry - September 06, 2023

LOGAN, W.Va. — Sitting on a bench laughing with a co-worker during a morning smoke break, Debra Orcutt quickly raises her hand when asked if she knows anyone dealing with depression.

“I am,” she tells a visitor to the roadside market where she bakes brownies and peanut butter fudge.

Orcutt, 63, has used medication to manage her depression for more than two decades since her son, Kyle, died at age 4 from a congenital illness. “There were days I couldn’t leave the house,” she said.

After a long marriage that ended in divorce, she said, she lives happily with her “hillbilly” partner near this small town in the heart of Appalachia, an hour’s drive south of the state capital, Charleston. But certain things, such as the sound of an ambulance siren or the death of her potbellied pig, can trigger lingering feelings of sadness.

Orcutt is hardly alone in this county, where almost everyone knows someone with depression — or experiences it themselves. And that’s not an exaggeration.

An estimated 32% of adults in Logan County, West Virginia, have been diagnosed with depression — the highest rate in the United States and nearly double the national rate, according to a report released in June by the Centers for Disease Control and Prevention.

The study, which provided estimates by county based on a national survey of nearly 400,000 people conducted in 2020, showed depression rates varied widely by region and even within states. Most counties with the highest rates were in a 13-state swath of Appalachia; the southern Mississippi River Valley, particularly Arkansas, Louisiana, and Tennessee; and Missouri, Oklahoma, and Washington.

The states with the lowest rates included California, Illinois, Alaska, and Hawaii.

West Virginia, which also has some of the nation’s highest rates of poverty and poor health, is home to eight of the 10 counties with the highest estimated rates of adult depression, the CDC survey found.

Overall, 18% of adults in the United States reported having been diagnosed with depression in their lifetimes, the CDC survey found.

Health experts say depression has risen to epidemic levels in the U.S. in recent decades, and the covid-19 pandemic exacerbated the problem with its isolating public health measures, threat of serious illness, lingering health effects, and sobering death toll.

With heightened awareness of rising depression rates, the Biden administration has announced plans to expand access to mental health care.

The CDC findings correlate with those from other surveys that show depression rates at alarming levels.

More than a simple case of the blues, depression is a mood disorder that causes a persistent feeling of sadness and a loss of interest in things once enjoyed. It affects eating, sleeping, and concentrating, as well as activities such as working or going to school.

“Depression is often a chronic illness, and if you stop treatment, it eventually comes back,” said Mark Miller, a psychiatry professor at West Virginia University in Morgantown.

He said his state’s combination of poor overall health, low education levels, and poverty — as well as the opioid epidemic, which has hit West Virginia particularly hard — takes a punishing toll on residents’ mental health.

In Logan County, nearly a quarter of whose 31,000 residents live in poverty, few expressed surprise in interviews with KFF Health News when told their home tops the list of most depressed counties.

“You’ve come to the right place for depression,” said Marie Tomblin as she worked the front desk of the Holiday Inn Express & Suites in Logan, noting her sister, daughter, and other family members have faced it. “I see it a whole lot, and people think it’s a normal feeling and don’t want to admit they have a problem,” she said.

Logan County is in the Appalachian coal-mining region, now a shadow of its former self, as the industry has buckled under economic and regulatory pressures, taking many jobs with it. In Logan, the county seat, the downtown has numerous closed stores and office buildings, and few people were out walking its sidewalks on a recent weekday morning.

The county’s high rates of chronic diseases like diabetes and obesity also make it a breeding ground for depression, health experts say.

While depression rates have risen nationally, Medicare claims data shows treatment for depression has increased more in West Virginia and especially in Logan County in recent years. Nationwide, 18% of enrollees in original Medicare received care related to depression in 2020, up from 16% in 2012 — despite an overall drop in care as the pandemic struck.

In Logan County, it was 28% of Medicare enrollees in 2020, up from 21% in 2012. As in the CDC study, Logan County’s numbers were among the highest in the country.

Yet, health professionals here say they are not overwhelmed by people seeking help for the condition.

Robert Perez, an internist in Logan, estimates more than half of his patients have depression. But he said few want to talk about it or accept a referral to a psychiatrist and he is limited in what he can do for them.

“It’s hard to convince people who don’t want to be helped,” he said. “I don’t have that much time to treat their depression.”

David Brash, the chief executive of Logan Regional Medical Center, which sits on a hill overlooking the town, said he’s not surprised by the area’s high depression rates.

The medical center doesn’t have psychiatrists on staff, but its primary care doctors try to treat depression as part of their practice, he said. The center recently started offering telepsychiatric consultations for its physicians to help treat patients in its emergency room.

“When you come from this area, you know what the challenges are,” Brash said. “And the economic challenges affect the depression — it’s not a new phenomenon.”

Diana Barnette, the county’s top elected official as president of the Logan County Commission, said doctors are often too quick to give patients medicine when they are feeling down. “I’m not saying we do not have a lot of depression in the area, but culturally it’s become so accepted to have a doctor give you a pill to make you feel better.”

Barnette, who owns several businesses in the county, including a movie theater, also blames the region’s rainy, cloudy weather and how its mountains limit residents’ sun exposure.

“There’s still a lot of stigma around it,” said Michael Baker, a pharmacist at Aracoma Drug Company, a pharmacy in Chapmanville, the county’s largest town after Logan.

Indeed, Chris Palmer, an assistant professor of psychiatry at Harvard Medical School, said the notion that overprescribing or cloudy weather explains high depression rates does not help the problem.

That viewpoint “strikes me as a hopeless and nihilistic attitude, that we are drowning and there is nothing we can do about it,” he said.

There are glimmers of hope here.

The pandemic is considered over by most residents; the state has leaned into its tourism motto, “Almost Heaven,” inspired by a well-known John Denver tune; and the region’s economy is slowly shifting from coal as the county markets its wooded trails to all-terrain vehicle enthusiasts.

In June, the same month the CDC released its findings, Coalfield Health Center, a federally funded clinic in the county, announced it had hired its first psychiatrist, David Lewis.

Lewis, who grew up in Logan County and taught high school math here, said he has seen about 50 patients so far and knows he has room to see more.

“People are not used to having the option of going to a psychiatrist here, and doctors still refer out to bigger institutions, which could be in Charleston,” he said.

Coalfield is struggling to overcome the stigma and other treatment obstacles around depression. In this region, Lewis said, people often view going for mental health help as being “weak in faith.”

“Only a small percentage of people who need help for depression are getting it,” said Kristin Dial, the executive director of Coalfield Health Center. “What we have found is that we can refer them to Dr. Lewis, but we have a high no-show rate.”

“We have to be here when they are ready,” she said.

Lewis said the best treatment for depression includes improving diet and exercise and avoiding drugs and alcohol. But when patients are asked how they want to manage their illness, they tend just to want pills, he said.

Coalfield also has a nurse practitioner, Elice Hinkle, who recently finished training to offer counseling at the clinic.

Because patients know Hinkle from her having treated their physical ailments, she said, they are more likely to come for counseling, and she can coordinate efforts with a patient’s other providers at the clinic.

Back at the market, Orcutt says it’s been many years since she went to counseling. These days, she copes with her depression and anxiety by keeping busy with hobbies such as sculpting and painting.

“It helps not to dwell on it,” she said.

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

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Workers Pay the Price While Congress and Employers Debate Need for Heat Regulations

Kaiser Health News:States - September 05, 2023

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

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

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

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

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

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

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

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

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

The Toll of Temperature

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

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

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

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

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

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

Putting a Price Tag on Heatstroke

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

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

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

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

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

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

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

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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Mississippi’s Cervical Cancer Deaths Indicate Broader Health Care Problems

Kaiser Health News:Health Industry - September 05, 2023

Shementé Jones knew something wasn’t right. Her back hurt. She felt pain during sex.

She said she kept telling her doctor something was wrong.

Her doctor told her, “Just wash your underwear in Dreft,” Jones said, referring to a brand of detergent.

Within months of that 2016 appointment, Jones, who lives in a suburb of Jackson, Mississippi, was diagnosed with stage 3 cervical cancer. She underwent a hysterectomy then weeks of radiation therapy.

“I ended up fine,” said Jones, now 43. “But what about all the other women?”

The question is especially pertinent in Jones’ home state, which had the nation’s second-highest age-adjusted cervical cancer mortality rate, 3.4 deaths per 100,000 women and girls annually from 2016 through 2020, behind only Oklahoma, according to National Cancer Institute data. And, for non-Hispanic Black women such as Jones, the rates in the state are even higher — 3.7 deaths per 100,000 people. This all translates to about 50 avoidable deaths of Mississippi women from cervical cancer each year in this largely rural state.

Health care experts said such a high death rate from a cancer that is preventable, detectable, and successfully treatable when found early is a warning sign about the general state of health care in Mississippi.

“They desperately need help there,” said Otis Brawley, a professor of oncology at Johns Hopkins School of Medicine and an expert on health disparities. “Political leadership is incredibly important in turning this around, and in Mississippi, the political leadership don’t give a damn.”

Despite the beauty of Mississippi, from the rolling hills of the Natchez Trace to white-sand beaches on the Gulf of Mexico, and the cultural renown of its famous musicians and storytellers, the state’s reputation is marred by its high rates of poverty. People who live there are accustomed to being the butt of jokes, but it hurts.

“Often Mississippi gets represented poorly,” said Mildred Ridgway, an OB-GYN at the University of Mississippi Medical Center in Jackson.

Recently the state has reeled from crisis after crisis. As recently as March, tornadoes and other severe weather killed more than two dozen people and caused extensive damage. Last year, the water in Jackson, the state capital, was undrinkable for months because of treatment plant failures.

On just about any measure of health, Mississippi ranks near or at the bottom. Nationally, an estimated 10% of people under 65 lack health insurance, but in Mississippi it is about 14%. Deaths from cardiovascular disease, diabetes, cancer, and many other illnesses are among the highest per capita in the country.

The high rates of poverty contribute to the high cervical cancer mortality, health experts said. About 19% of Mississippians — nearly 1 in 5 — live in poverty, while nationally it is about 13%.

“If I had to pinpoint what that’s from, it’s from lack of education,” said Ridgway, referring to a lack of knowledge about regular cervical cancer screening, which the U.S. Preventive Services Task Force recommends every three years for women 21 to 65.

But it likely goes far beyond that, many health experts said. Doctors may be less likely to stress preventive care to less educated women and women of color, studies suggest.

“There’s a big difference in the quality of care,” said Rajesh Balkrishnan, a professor of public health at the University of Virginia who has extensively studied oncology care in Appalachia and other underserved areas.

In her case, Jones said, she could not get her doctor’s office to return her calls in a timely manner. She was concerned about her symptoms.

“I felt I wasn’t listened to. I called her more than she called me,” Jones said of her doctor. “I was going to my appointments, and I was ignored.”

And getting access to any care — let alone quality, culturally competent care from providers who acknowledge a patient’s heritage, beliefs, and values during treatment — may be difficult.

Most of the state’s 82 counties are rural. The average travel distance to a grocery store is 30 miles, and half the population lives in a county that is considered medically underserved, said Letitia Thompson, a vice president in Mississippi for the American Cancer Society.

Low-income rural residents often lack reliable transportation, she said, and even if they own a vehicle, they lack gas money. They often can’t find — or pay for — someone to take care of their children so they can go to the doctor. Women with low-paying jobs often lack the time to drive to a clinic in a distant town, or the ability to take off from work without losing pay.

“Women who work and take care of children often have a huge burden of responsibility,” Ridgway said. “They don’t have time or the money.”

Many also don’t have insurance. While the Affordable Care Act has lowered the uninsured rate in Mississippi, an estimated additional 88,000 Mississippians could have coverage through Medicaid if the state expanded eligibility for the federal-state insurance program for low-income Americans. But the state is one of 10 that have not agreed to expand coverage to more adults.

Mississippi Gov. Tate Reeves, a Republican up for reelection this year, is opposed to expansion. His Democratic challenger, Brandon Presley, a second cousin of the music legend Elvis, favors it. Polls show Presley lagging Reeves.

Without expansion of Medicaid, people who have low incomes are often left to decide between forgoing insurance and purchasing a policy through the Affordable Care Act marketplace if they cannot get insurance through employment. Even if they qualify for subsidized marketplace plans, they may face high deductibles or copayments for visits, health experts said. That often means going to the doctor only when sick. Preventive care becomes a luxury.

“You save your health care dollars for when you are sick or your kids are sick,” said Thompson, of the American Cancer Society.

But regular medical care can make all the difference with cervical cancer. Pap tests have long helped detect abnormal cervical cells that could turn malignant. Brawley said the test is “one of the best” cancer screening tests because of its accuracy.

In 2006, vaccines to prevent cervical cancer were first approved by the FDA. The vaccines guard against the common sexually transmitted infection called the human papillomavirus, which causes nearly all cervical cancers. The HPV vaccine is most effective when administered before a person has become sexually active; the federal recommendation is to get the shots by age 12.

Only a handful of places in the U.S. — including Hawaii, Rhode Island, Virginia, Puerto Rico, and the District of Columbia — require the vaccines to attend school. California has pending legislation that initially would have required that middle schoolers get the shots, but the bill has since been watered down to recommend them instead.

Mississippi does not require the vaccine, and the state has had the lowest share of fully vaccinated teens by a large margin for years. Fewer than 39% of teens there were up to date on HPV vaccination as of 2022, according to the CDC, compared with an estimated 63% nationally.

Thompson said she thinks many parents are hesitant to have their children vaccinated because they believe it would encourage sexual activity.

“This is an anti-cancer vaccine,” Thompson said.

Krista Guynes, director of the women’s health program at the Mississippi State Department of Health, said the state has several efforts underway to better inform women about the need for screening. It also has clinics for uninsured women. In partnership with the National Cancer Institute and University of Mississippi Medical Center, she said, the health department is conducting a study to evaluate risk and look for new biomarkers in women undergoing screening for cervical cancer.

As for Jones, she considers herself lucky to have survived stage 3 cancer.

“I would just like to say to every woman, ‘Get the vaccine.’ The vaccine will make the difference, so they won’t have to be told, ‘I’m sorry, you have cancer.’”

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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Biden Administration Proposes New Standards to Boost Nursing Home Staffing

Kaiser Health News:Health Industry - September 01, 2023

The nation’s most thinly staffed nursing homes would be required to hire more workers under new rules proposed on Friday by the Biden administration, the greatest change to federal nursing home regulations in three decades.

The proposed standard was prompted by the industry’s troubled performance earlier in the coronavirus pandemic, when 200,000 nursing home residents died. But the proposal falls far short of what both the industry and patient advocates believe is needed to improve care for most of the 1.2 million Americans in nursing homes.

The proposal, by the Centers for Medicare and Medicaid Services, would require all facilities to increase staff up to certain minimum levels, but it included no money for nursing homes to pay for the new hires.

CMS estimated that three-quarters of the nation’s 15,000 homes would need to add staff members. But the increases at many of those facilities would be minor, as the average nursing home already employs nurses and aides at, or very close to, the proposed levels.

“The standards are a lot lower than what a lot of experts, including myself, have called for over the years,” said David Grabowski, a professor of health care policy at Harvard Medical School. “There are some real positives in here, but I wish the administration had gone further.”

The government said it would exempt nursing homes from punishment if they could prove that there was a local worker shortage and that the facilities had made sincere efforts to recruit employees.

“Fundamentally, this standard is wholly inadequate to meet the needs of nursing home residents,” said Richard Mollot, the executive director of the Long Term Care Community Coalition, an advocacy group based in New York.

Executives in the nursing home industry said that without extra money from Medicare or Medicaid — the two federal insurers that pay for most nursing home care — the requirement would be financially unattainable.

“It’s meaningless to mandate staffing levels that cannot be met,” Katie Smith Sloan, the president and chief executive of LeadingAge, an association that includes nonprofit nursing homes, said in a statement. “There are simply no people to hire — especially nurses. The proposed rule requires that nursing homes hire additional staff. But where are they coming from?”

The new staffing standard would require homes to have daily average nurse staffing levels amounting to at least 0.55 hours per resident. That translates to one registered nurse for every 44 residents. But that is below what the average nursing home already provides, which is 0.66 hours per resident, a 1:36 ratio, federal records show.

At least one registered nurse would have to be on duty at all times under the proposed plan — one of the biggest changes for the facilities, as they currently must have nurses for only eight consecutive hours each day.

The proposed rule also calls for 2.45 nurse aide hours per resident per day, meaning a ratio of about one aide for every 10 residents. While the federal government sets no specific staffing requirements for nurse aides, the average home already provides 2.22 nurse aide hours a day, a ratio of about 1:11.

“The federal minimum staffing standards proposed by CMS are robust yet achievable,” the agency said in a statement. “The proposal also makes clear that the numerical staffing levels are a floor — not a ceiling — for safe staffing.”

Registered nurses are at the top of the chain of command at nursing homes, overseeing assessments of residents and handling complex clinical tasks. Nurses delegate more straightforward clinical roles to licensed practical nurses.

Certified nurse assistants, often called nurse aides, are generally the most plentiful in a nursing home and help residents with basic needs like bathing, getting out of bed and eating.

On average, registered nurses make $37 an hour while licensed practical nurses earn $28 an hour, according to CMS. Aides often start at minimum wage or slightly above, earning $17 an hour on average.

“People have more choice,” said Tina Sandri, the chief executive of Forest Hills of DC, a nursing home in Washington, D.C., referring to nursing home staff. “They can go to hospitals and make more and do less than they do here in a nursing home.”

“We’ve lost staff to hospitals that had $20,000 signing bonuses,” she added, “and as a nonprofit, we can’t compete with that.”

Nursing home officials say they cannot afford to pay higher wages because state Medicaid programs reimburse them too little. Patient advocates, however, note that some for-profit homes are providing substantial returns to investors.

Medicare and Medicaid spent $95 billion on nursing home care and retirement community care in 2021, according to CMS. The agency estimated that the new standards would cost homes another $4 billion in three years, when all homes except those in rural areas would need to comply. Rural homes would have five years.

Ellen Quirk, a retired certified nurse assistant in Hayes, Virginia, recalled that sometimes she would care for all of the residents on a single floor in the nursing home, which could be 20 or more people, by herself. It’s challenging for an aide to care for more than five to seven people at a time, she said.

“If it’s more than that, then things aren’t done properly,” Quirk, 63, said. “Things are skipped over, like a bath or changing them every couple of hours or feeding them properly.”

“I’ve seen patients that roll over and fall out of bed,” she added. “Sometimes they get bed sores because beds are saturated in urine for hours and hours.”

The nursing home industry has been pressing federal and state governments to pay for a bevy of enticements to long-term care workers, including educational subsidies for those who have worked in nursing homes, loan forgiveness and career opportunities for certified nursing assistants working toward their nursing degrees.

The administration said it would offer $75 million in scholarships and tuition as part of the new proposal. The administration is accepting comments for the next 60 days before it finalizes the new standard.

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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Statement from Secretary Becerra on National Suicide Awareness Month

HHS Gov News - September 01, 2023
Suicide prevention month statement

HHS Proposes Minimum Staffing Standards to Enhance Safety and Quality in Nursing Homes

HHS Gov News - September 01, 2023
Builds on President Biden’s Historic Commitment to Create a Long-Term Care System Where People Can Live with Dignity

When Temps Rise, So Do Medical Risks. Should Doctors and Nurses Talk More About Heat?

Kaiser Health News:Health Industry - September 01, 2023

An important email appeared in the inboxes of a small group of health care workers north of Boston as this summer started. It warned that local temperatures were rising into the 80s.

An 80-plus-degree day is not sizzling by Phoenix standards. Even in Boston, it wasn’t high enough to trigger an official heat warning for the wider public.

But research has shown that those temperatures, coming so early in June, would likely drive up the number of heat-related hospital visits and deaths across the Boston region.

The targeted email alert the doctors and nurses at Cambridge Health Alliance in Somerville, Massachusetts, got that day is part of a pilot project run by the nonprofit Climate Central and Harvard University’s Center for Climate, Health, and the Global Environment, known as C-CHANGE.

Medical clinicians based at 12 community-based clinics in seven states — California, Massachusetts, North Carolina, Oregon, Pennsylvania, Texas, and Wisconsin — are receiving these alerts.

At each location, the first email alert of the season was triggered when local temperatures reached the 90th percentile for that community. In a suburb of Portland, Oregon, that happened on May 14 during a springtime heat wave. In Houston, that occurred in early June.

A second email alert went out when forecasts indicated the thermometer would reach the 95th percentile. For Cambridge Health Alliance primary care physician Rebecca Rogers, that second alert arrived on July 6, when the high hit 87 degrees.

The emails remind Rogers and other clinicians to focus on patients who are particularly vulnerable to heat. That includes outdoor workers, older adults, or patients with heart disease, diabetes, or kidney disease.

Other at-risk groups include youth athletes and people who can’t afford air conditioning, or who don’t have stable housing. Heat has been linked to complications during a pregnancy as well.

“Heat can be dangerous to all of us,” said Caleb Dresser, director of health care solutions at C-CHANGE. “But the impacts are incredibly uneven based on who you are, where you live, and what type of resources you have.”

The pilot program aims to remind clinicians to start talking to patients about how to protect themselves on dangerously hot days, which are happening more frequently because of climate change. Heat is already the leading cause of death in the U.S. from weather-related hazards, Dresser said. Letting clinicians know when temperatures pose a particular threat to their patients could save lives.

“What we’re trying to say is, ‘You really need to go into heat mode now,'” said Andrew Pershing, vice president for science at Climate Central, with a recognition that “it’s going to be more dangerous for folks in your community who are more stressed.”

“This is not your grandmother’s heat,” said Ashley Ward, who directs the Heat Policy Innovation Hub at Duke University. “The heat regime that we are seeing now is not what we experienced 10 or 20 years ago. So we have to accept that our environment has changed. This might very well be the coolest summer for the rest of our lives.”

The alerts bumped heat to the forefront of Rogers’ conversations with patients. She made time to ask each person whether they can cool off at home and at work.

That’s how she learned that one of her patients, Luciano Gomes, works in construction.

“If you were getting too hot at work and maybe starting to feel sick, do you know some things to look out for?” Rogers asked Gomes.

“No,” said Gomes slowly, shaking his head.

Rogers told Gomes about early signs of heat exhaustion: dizziness, weakness, or profuse sweating. She handed Gomes tip sheets she’d printed out after receiving them  along with the email alerts.

They included information about how to avoid heat exhaustion and dehydration, as well as specific guidance for patients with asthma, chronic obstructive pulmonary disease (COPD), dementia, diabetes, multiple sclerosis, and mental health concerns.

Rogers pointed out a color chart that ranges from pale yellow to dark gold. It’s a sort of hydration barometer, based on the color of one’s urine.

“So if your pee is dark like this during the day when you’re at work,” she told Gomes, “it probably means you need to drink more water.”

Gomes nodded. “This is more than you were expecting to talk about when you came to the doctor today, I think,” she said with a laugh.

During this visit, an interpreter translated the visit and information into Portuguese for Gomes, who is from Brazil and quite familiar with heat. But he now had questions for Rogers about the best ways to stay hydrated.

“Because here I’ve been addicted to soda,” Gomes told Rogers through the interpreter. “I’m trying to watch out for that and change to sparkling water. But I don’t have much knowledge on how much I can take of it.”

“As long as it doesn’t have sugar, it’s totally good,” Rogers said.

Now Rogers creates heat mitigation plans with each of her high-risk patients. But she still has medical questions that the research doesn’t yet address. For example: If patients take medications that make them urinate more often, could that lead to dehydration when it’s hot? Should she reduce their doses during the warmest weeks or months? And, if so, by how much? Research has yielded no firm answers to those questions.

Deidre Alessio, a nurse practitioner at Cambridge Health Alliance, also has received the email alerts. She has patients who sleep on the streets or in tents and search for places to cool off during the day.

“Getting these alerts makes me realize that I need to do more homework on the cities and towns where my patients live,” she said, “and help them find transportation to a cooling center.”

Most clinics and hospitals don’t have heat alerts built into electronic medical records, don’t filter patients based on heat vulnerability, and don’t have systems in place to send heat warnings to some or all of their patients.

“I would love to see health care institutions get the resources to staff the appropriate outreach,” said Gaurab Basu, a Cambridge Health Alliance physician who co-directs the Center for Health Equity Advocacy and Education at Cambridge Health Alliance. “But hospital systems are still really strained by covid and staffing issues.”

This pilot program is an excellent start and could benefit by including pharmacists, said Kristie Ebi, founding director of the Center for Health and the Global Environment at the University of Washington.

Ebi has studied heat early-warning systems for 25 years. She says one problem is that too many people don’t take heat warnings seriously. In a survey of Americans who experienced heat waves in four cities, only about half of residents took precautions to avoid harm to their health.

“We need more behavioral health research,” she said, “to really understand how to motivate people who don’t perceive themselves to be at risk, to take action.”

For Ebi and other researchers, the call to action is not just to protect individual health, but to address the root cause of rising temperatures: climate change.

“We’ll be dealing with increased exposure to heat for the rest of our lives,” said Dresser. “To address the factors that put people at risk during heat waves, we have to move away from fossil fuels so that climate change doesn’t get as bad as it could.”

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

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

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KFF Health News' 'What the Health?': 3 Health Policy Experts You Should Know

Kaiser Health News:Insurance - August 31, 2023
The Host Julie Rovner KFF Health News @jrovner Read Julie's stories. Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

In this special episode, host Julie Rovner, KFF Health News’ chief Washington correspondent, interviews three noted health policy experts.

Amy Finkelstein is a health economist at the Massachusetts Institute of Technology and co-author of “We’ve Got You Covered: Rebooting American Health Care,” which posits a new approach to universal health insurance. Sylvia Morris is a physician and one of the co-authors of “The Game Plan: A Woman’s Guide to Becoming a Doctor and Living a Life in Medicine,” in which five former medical school classmates share things they wish they had known earlier about how to thrive in what is still a male-dominated profession. And Michael LeNoir is a pediatrician, allergist, former broadcaster, and health educator in the San Francisco Bay Area who founded the African American Wellness Project, aimed at helping historically underserved African American patients better participate in their own care.

Click to open the transcript Transcript: 3 Health Policy Experts You Should Know

[Editor’s note: This transcript, generated using transcription software, has been edited for style and clarity.]

Julie Rovner: Hello and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News. Normally I’m joined by some of the best and smartest health reporters in Washington. But today we have a very special episode. Rather than our usual news wrap, we have three separate interviews I did earlier this month with three very interesting guests: author and health economist Amy Finkelstein, author and physician Sylvia Morris, and physician and medical educator Michael LeNoir. So let’s get right to it.

I am pleased to welcome to the podcast Amy Finkelstein, professor of economics at the Massachusetts Institute of Technology, noted health policy wonk, and one of my favorite people in health care. She’s got a new book, just out, called “We’ve Got You Covered: Rebooting American Health Care.” Amy Finkelstein, welcome to “What the Health?”

Amy Finkelstein: Thanks so much for having me on, Julie.

Rovner: So it’s been a minute since large-scale health system reform was on the national agenda — I think, even in the research community — which is in some ways odd because I don’t think there’s ever been as much unanimity that the health system is completely dysfunctional as there is right now. But I’m starting to see inklings of ideas bubbling up. I interviewed Kate Baicker, your former partner in research, a couple of months ago, and I don’t know if you saw it, but there’s a new Republican health reform plan just out from the Hoover Institution. Why is now the time to start talking about this again?

Finkelstein: I mean, I think the right question is why haven’t we been talking about it all along? I think it’s, unfortunately, always timely to talk about how to fix the incredibly rooted rot in our health care quote-unquote “system.”

Rovner: Why has it been so hard to reach any consensus about how health insurance should work? We don’t … I mean, we’re at a point even in the United States where we don’t all agree that everyone should have health insurance.

Finkelstein: So it’s a really good question. I think my co-author, Liran Einav, who’s my long-term collaborator, and I came to realize in writing this book is that we weren’t getting the right answers and consensus on them because we weren’t asking the right questions, both as researchers and in the public policy discourse. There’s a lot of discussion of “What do you think of single-payer?” or “Should we have a public option?” or “What about health savings accounts?” But what we came to realize, and it’s kind of idiotically obvious once we say it, but it still unfortunately bears saying: You can’t talk about the solution until you agree on what is the goal. What are we trying to do in health policy and health policy reform? And there are, of course, many admirable reasons to want health policy reform, or government intervention, more generally, in health policy. You can think, and this is what we’ve worked on for many years, that, you know, Adam Smith’s “invisible hand” doesn’t work that well in medical marketplace. You can be interested in making sure that we try to improve population health. You can think that health care is a human right. There are many possible reasons. What we came to realize in working on this book, and what then provided startling clarity and, hopefully, ultimately consensus on the solution, is that while all of these may be admirable goals, none of them are actually the problem that we have been trying but failing to solve with our health policy for the last 70-plus years. What becomes startlingly clear when you look at our history — and it’s the same in other countries as well, they’ve just succeeded more than we have — is that there is a very clear commitment, or a social contract, if you will, that we are committed that people should have access to essential medical care regardless of their ability to pay. Now, that may sound absurd in the only high-income country without universal health coverage, but as we discuss in our book, that represents our failure to fulfill that commitment, not its absence. And as we describe in great detail, it’s very clear from our history of policy attempts that there is a strong commitment to do this. This is not a liberal or a conservative perspective. It’s, as we discuss, an innate and in some sense psychological or moral impulse. And once you recognize this, as people have across the political spectrum, fundamentally we’re not going to ever consciously deny access to essential medical care for people who lack resources, and that an enormous number of our existing policies have been a backhanded, scrambling, not coherently planned attempt to get there. And I’m not just talking about the requirement that people can’t be turned away from the emergency room. If you look at all of these public policies we have to provide health insurance if you’re poor, if you’re young, if you’re old, if you’re disabled, if you’re a veteran, if you have specific diseases — there’s a program for low-income women with breast and cervical cancer. There’s a program for people with tuberculosis, for people with AIDS, for people with kidney failure. All of these arose out of particular political circumstances and salient moments where we felt compelled to act. It becomes very clear that we’re committed to doing this, and then a solution then becomes startlingly simple, once we agree. And, hopefully, if you don’t already, our book will convince you that whether or not you support this mission, it’s very clear it is the mission we’ve adopted as a society. Then the solution becomes startlingly simple.

Rovner: And the solution is …?

Finkelstein: Universal, automatic, basic coverage that’s free for everyone with the option — for those who want to and can afford it — to buy supplemental coverage. So the key is that the coverage be automatic, right? We’ve tried mandating that people have coverage … requiring it doesn’t make it so. In fact, a really sobering fact is that something like 6 out of 10 of the people who currently lack insurance actually are eligible for either free or heavily discounted coverage. They just don’t have it. And that’s because there’s a very, very complicated series of paths by which you can navigate coverage, depending, again, on your specific circumstances: age, income, disease, geography, disability, what have you. Once you have patches like this, you’ll always have gaps in the seam. So that’s why it has to be universal and automatic. We also argue that it has to be free, something that may get us kicked out of the economists’ club because, as economists for generations, we’ve preached that patients need some skin in the game, some copays and deductibles, so they don’t use more care than they actually really need. And in the context of universal coverage, we take that back. It was kind of a really sobering moment for us. We’ve written enormously on this issue in the past. We weren’t wrong about the facts. When people don’t have to pay for their medical care, they do use more of it. We stand by that research. And that of many other …

Rovner: This goes back to Rand in the 1970s, right?

Finkelstein: Exactly. And the Oregon Health Insurance Experiment, which I ran with Kate Baicker, whom you mentioned earlier. It’s just that the implications we drew from that we’re wrong — that if we actually are committed to providing a basic set of essential medical care for everyone, the problem is, even with very small copays, there will always be people who can’t afford the $5 prescription drug copay or the $20 doctor copay. And there’s actually terrific recent work by a group of economists — Tal Gross, Tim Layton, and Daniel Prinz — that show this quite convincingly. So what we’ve seen happen when we look at other high-income countries that have followed the advice of generations of economists going back, as you said, to Rand, and introduced or increased cost sharing in their universal basic coverage system to try to reduce expenses, it’s extraordinary. Time and time again, these countries introduced the copays with one hand and introduced the exceptions simultaneously with the other — exceptions for the old, the young, the poor, the sick, veterans, disabled. Sound familiar? It’s the U.S. health insurance in a microcosm applied to copays. And so what you see happen, for example, in the U.K., that was famously, you know, free at the point of service when it was started in 1948, but then, bowing to budgetary pressures and the advice of economists introduced, for example, a bunch of copays and prescription drugs. They then introduced all these exceptions. The end result is that currently 90% of prescriptions in the U.K. are actually exempted from these copays. So it’s not that copays don’t reduce health care spending. They do. That economic research is correct. It’s that they’re not going to do that when they don’t exist. All we do is add complexity with these patches. So that’s, I think, the part that we can get up and stand up and say and get a lot of cheers and applause. But I do want to be clear, it’s not all rainbows and unicorns. We do insist that this universal, automatic, free coverage be very basic. And that’s because our social contract is about providing essential medical care, not about the high-end experience that obviously everyone would like, if it were free. And so …

Rovner: And that’s exactly where you get into these fights about how — even, we’re seeing, you know, with birth control and pretty much any prescription drug — you have to offer one drug, but there are other drugs that might be more expensive, and insurance plans, trying to save money, don’t want to offer them. You can see already where the tension points are going to end up. Right?

Finkelstein: Exactly. And every other country has dealt with this, which is why we know it can be done. But they do one thing that is startlingly absent from U.S. health policy. Besides the universal coverage part, they also have a budget. And it’s kind of both incredibly banal and incredibly radical to say, “We should have a budget in our U.S. health care policy as well.” Everything else has a budget. When school districts make education policy, they do it given a budget and they decide how to make tough choices and allocate money across different types of programming. Or they decide to raise taxes, and go to the voters to raise taxes to fund more. We don’t have a budget for health care in the U.S. When people talk about the Medicare budget, they’re not actually talking about a budget in the sense that when I give my kids an allowance, that’s their budget, and they have to decide which toy to buy or which candy to purchase. When we talk about the Medicare budget, we just mean the amount we have spent or the amount that Medicare will spend. There’s no actual constraint, and that has to change. And only then can we have those tough conversations, as every other country does, about what’s going to be provided automatically and for free, and what’s obviously nice and desirable, but not actually part of essential medical care and our social contract to provide it.

Rovner: But, of course, the big response to this is going to be — and I’ve covered enough of these debates to know — you’re going to ruin innovation if we have a budget, if we limit what we can pay, the way every other country does, that we’re not going to have breakthrough drugs or breakthrough medical devices or breakthrough medical procedures, and we’re all going to be the worse for it.

Finkelstein: That, I think, is a very real concern, but it’s not a problem for us, because if that’s the concern, when the next administration adopts our policy, they can set a higher budget. Right? If we think that we want to induce innovation, and the way to do that is through higher prices for medical care, then we can decide to pay more for it — or we can decide, oh, my goodness, right, get it coming and going. On the other hand, we don’t want to raise taxes. We don’t want to spend even more of public money on health care. OK, well, then we’ll decide on less innovation. That’s in some sense separable from universal, automatic, basic free coverage. We can then decide what level we want to finance that at. And also, to be clear, we fully expect, in the context of our proposal, that about two-thirds of Americans would buy supplemental coverage that would get you access to things that aren’t covered by basic or greater choice of doctor or shorter wait times. And so that, again, might also — but that would be privately financed, not publicly financed — but that would also help with the innovation angle.

Rovner: And this is not a shocking thing. This is exactly how Switzerland works, right?

Finkelstein: Yeah, the somewhat sobering or, dare I say, humbling realization we came to is that, as I said, we very much thought about this — I guess, as academics — from first principles, you know, what is the objective that we’re trying to achieve it? And given that, how do we achieve it? But once we did that and we looked around the rest of the world — right? — it turns out that’s actually what every other high-income country has done, not just Switzerland, but all of them have some version. And they’re very different on the details, but some version of automatic, universal, basic coverage with the ability to then supplement if you want more. So, with many things when you do research on them and then you run into the man on the street and they say, “Isn’t this simple? Can’t we just do what every other country does?” When it comes to health care delivery and how to cut waste and overuse and deal with underuse in the health care system, the man on the street is, unfortunately, wrong. And we have a lot more work to do to figure out how we can get more bang for our health care buck. But it turns out they were right all along. And we, or I and my co-author and many other, I think, academic economists and policymakers, just didn’t realize it, that actually the coverage problem has a really, really simple solution. And that’s the key message of our book.

Rovner: So one of the things that’s stuck with me for 15 years now is a piece that Atul Gawande wrote in The New Yorker just before the debate on the Affordable Care Act about how, yes, every other country has this, but, in fact, every other country had some kind of event that triggered the need to create a system. You know, in England, it was coming out of World War II. Every country had some turning point. Is there going to be some turning point for the U.S. or are we just going to have to sort of knuckle under and do this?

Finkelstein: So we deliberately steer clear of the politics in most of the book because our view is the question you started with, like, “Why can’t we agree?” So let’s at least … can we agree on the solution before we figure out how to achieve it? But, of course, in the epilogue, we do discuss this, you know, how could we get there? And I guess the main lesson that we take away from our read of history is that universal health insurance was neither destined to happen in every other country, nor destined not to happen in the U.S. We talk about several incredibly near-misses in the U.S. Probably the closest we got was in the early 1970s, when both the Republican Nixon administration and the Democratic Congress under Kennedy had competing proposals for universal coverage on the table. They were actually arguing over whether there should be copays when there are different accounts of whether the Democrats got overly optimistic with Watergate looming and thought they could get more, or some senator got drunk and had a car accident and Ways and Means got derailed. But we had a near-miss there. But also, and to your point about the U.K., more soberingly, if you look at the history of other countries, it wasn’t easy there. I mean, the British Medical Association threatened to go on strike before the implementation of the National Health Service in 1948. So, despite that, you know, now it’s … the National Health Service is as popular as the British monarchy — or actually more popular, perhaps …

Rovner: [laughs] Probably more!

Finkelstein: … and is beloved by much of the British population. But if you look at the narrative that this was destined to come out of the postwar consensus, the Labour leader, [Aneurin “Nye”] Bevan, who was pushing for it on the eve of its enactment, described the Tories as, quote, “lower than vermin for their opposition to it.” I mean, it was just … and similarly in Canada, when Saskatchewan was the first province to get universal medical insurance, there the doctors did go on strike for over three weeks. So this idea that every other country just had their destiny, their moment, when it clearly came together, and we were destined not to have it? Neither seems to be an accurate reading of history.

Rovner: Well, it’s a wonderful read. And I’m sure we’ll come back and talk again as we dive back into this debate …

Finkelstein: I’d love to.

Rovner: … which I’m sure we’re about to do. Amy Finkelstein, thank you so much for joining us.

Finkelstein: Thank you so much for having me.

Rovner: Hey, “What the Health?” listeners. You already know that few things in health care are ever simple. So, if you like our show, I recommend you also listen to “Tradeoffs,” a podcast that goes even deeper into our costly, complicated, and often counterintuitive health care system. Hosted by longtime health care journalist and friend Dan Gorenstein, “Tradeoffs” digs into the evidence and research data behind health care policies and tells the stories of real people impacted by decisions made in C-suites, doctors’ offices, and even Congress. Subscribe wherever you listen to your podcasts.

Next, we have Sylvia Morris, one of a group of friends who are women physicians who want to make it easier for the next generation of women physicians.

I am pleased to welcome to the podcast Dr. Sylvia Morris. She’s an internist from Atlanta and one of five authors of a new book called “The Game Plan: A Woman’s Guide to Becoming a Doctor and Living a Life in Medicine.” Dr. Morris, welcome to “What the Health?”

Sylvia Morris: Thank you so much for having me.

Rovner: So why does there even need to be a book about being a woman in medicine? Aren’t medical schools more than half women students these days?

Morris: They are. But when you look at some of the specialties, and once you get out into practice, women leaders are still not as plentiful. They are not 50%. So, we just wanted to write from our perspective some tips and tools of the trade.

Rovner: So before we talk about the book, tell us about how you and your co-authors got together. It is rare to find a book that has five listed authors.

Morris: Exactly. So we actually went to med school together. We were classmates at Georgetown, and we met, I will say, in the early ’90s, shall we say? 1992, 1993. And after we finished med school, as well as training, we started doing girls’ trips. Our first one was, like, to Las Vegas and then subsequently have just really evolved. And probably 10 years ago, we were sitting around in Newport Beach and we thought, you know what? We should figure out something to do to really, to give back, but also to share information that we didn’t have. I am a first-generation physician. Several of my co-authors are as well. And it would have been nice for someone to say, “Hey, Doc, maybe you should think about this.” So that’s why we wrote the book.

Rovner: I noticed that, yeah, I mean, you start very much at the beginning — like, way before med school and go all the way through a career. I take it that was very intentional.

Morris: Yes, because I don’t think most people wake up and decide they’re going to be a doctor and then apply to medical school. And although we all have different journeys, some of us decided to become physicians later. Later, meaning in college. I was a kid that always wanted to be a doctor. So at 5, I would say “I want to be a doctor,” and here I am a physician. So we really wanted to highlight the different pathways to becoming a physician and just so that people can just … we’re going to peel the curtain back on what’s happening.

Rovner: I love how sort of list-forward this book is. Tell us the idea of actually making a game plan.

Morris: Well, we’re big “list people.” I think in med school, you kind of learn, well, what’s your to-do list for today? You need to check that CBC. Yeah, you know, you have to follow up on physical therapy, all of those things. So lists become a really inherent part of how we do business. And I think people understand the list, whether it’s a grocery shopping list. So we wanted to be prescriptive, not specific, meaning you must do X, but here are some of the things that you need to think about. And a list is very succinct, and everyone can get it.

Rovner: Which leads right into my next question. I love how this is such a nitty-gritty guide about all of the balancing that everybody in such a demanding profession of medicine, but particularly women, need to think about and do. What do you most wish that you had known when you were starting out that you’d like to spare your readers?

Morris: If I could go back to my 17-year-old self who was just dropped off at Berkeley, I really would say, “Enjoy the ride.” And that sounds so trite, because we get very caught up in “it has to be this way.” And quite honestly, things have not turned out how I thought they were going to turn out. Certainly, in many ways, much grander and beyond my wildest imagination. But you do have to be intentional about what you want. So I’ve been very clear about wanting to be a physician, and I’ve worked along that path. It is never a straight line. So just embrace the fact that there are going to be some ups and some downs, but keep in focus on the goal and persevere. I’d like to borrow the word from Associate Justice [Ketanji Brown] Jackson, how she talked about persevere.

Rovner: I noticed that there are a number of places where there are key decisions that need to be made. And I think, you know, you talk about being intentional. I think people don’t always think about them as they’re doing them, as in deciding where to go to medical school, where to do a residency, what specialty to choose, what type of practice to participate in. The five of you are all in different specialties in different sort of practice modalities, right?

Morris: Yes, we are. And I think that that really adds to the richness of the book. And again, there’s no one way to get to your goal. But we have the benefit of being able to sort of bounce ideas off of each other. So if we are looking for a new job or kind of a career pivot, then we have someone to reach out to to say, “Hey. You did this. What are your thoughts? What should I look out for?”

Rovner: How important is it to have a support system? I mean, obviously, you talk about family and kids, but, I mean, to have a support system of friends and colleagues and people you can actually share stresses and successes with, that others will understand.

Morris: It is so important to know that you are not alone. There’s nothing new under the sun. So if you are going through something where we suffer in silence and isolation, that’s when bad things happen. So having a trusted group of friends, and whether it’s one person or three people — I’m lucky to have at least four people in my life that I can be candid and vulnerable with. It makes all the difference in the world. My mom died when I was in medical school, and having the support of my colleagues, my friends, to say, “Hey, yeah, you can keep going. You can do this.” That’s important. And there are some very low periods in residency, just because you’re tired all of the time. So having a group, whether it’s one or three or four, then please, have friends.

Rovner: I’m curious that while you are all African American women, you don’t really have a separate section on navigating medicine as members of an underrepresented group. Is that for another book entirely? Was there a specific reason that you didn’t do that?

Morris: I think certainly when people see us on the cover, then you’d realize, “Oh, they are women of African descent.” And I also think that because … women are still underrepresented in medicine, in particular in leadership, that we wanted to make sure we reached the broadest audience. And quite truthfully, our message works for not only women, but also works for men, it works for people of color. We just really wanted to say, “Hey, these are the things that we can think about when you are applying to medical school and as you embark on your career.” But I like the idea of a second book.

Rovner: Actually, that’s my … my next question is, what do you hope that men get out of this? Because, you know, flipping through, it’s a really good guide, not just to being a woman in medicine, but to being anyone in medicine or really anyone in a very time-demanding profession.

Morris: Yes, the word “ally” is kind of overused now, but I think that it gives the men in our lives, whether they be our partners and husbands, our fathers — I have a favorite uncle, Uncle William — to have an inkling of what’s happening and how to best support us. So I think that there’s just some valuable pearls.

Rovner: Well, thank you very much. It is a really eye-opening guide. Dr. Sylvia Morris, thank you for joining us.

Morris: Thank you.

Rovner: Finally for this special episode, here’s my chat with Michael LeNoir, a physician who spent much of his career trying to improve the health of African American patients.

We are pleased to welcome to the podcast Dr. Michael LeNoir, an allergist and pediatrician who spent the last 4½ decades serving patients in the East Bay of San Francisco and working to improve health equity nationwide. He’s a former president of the National Medical Association, which represents African American physicians and patients, and a founder of the African American Wellness Project, a nonprofit that grew out of the realization of just how large and persistent health disparities are for people of color. Dr. LeNoir, welcome to “What the Health?”

Michael LeNoir: Well, thank you so much.

Rovner: Health disparities and health equity have become, if you will, trendy research topics in the past couple of years in the health policy community because we know that people of color have worse health outcomes in general than white people, regardless of income. But this is hardly a new problem. When did it become obvious to you that, despite other civil rights advances, the health system is still not serving the Black community equally?

LeNoir: Well, I think it goes back to, actually, 2002, when as a doctor in a community that had people of color, physicians of color, I recognized that there was a difference in how African Americans were treated both professionally and personally. And it was such a stark difference. So I gathered together most of the Black health leaders in the Bay Area, some running hospitals, some running programs, two were directors of health, some Congress people, and some local politicians. And there were about 30 people in the room. And I … go around the room and asked, give me one instance where the health system that you engaged in treated you disrespectfully or you didn’t get information, or you felt abandoned without advocates. And we weren’t four people in when some people started crying about experiences that they’d all had. Now, I knew they had these experiences because of that as a doctor. You know, I’m in the doctor’s lounge as a consultant in allergy and immunology. I see the differences in how Black people were treated as opposed to whites. And I see the respect that was given to white physicians that was not given to Black physicians. So at that point, I decided, you know, there’s something upside down in this health system. The concept is that health is supposed to take care of you from the top down. Either your insurance company is supposed to take care of you, or the feds, or somebody. But my feeling was, you know, for African Americans the health system was not going to change unless we changed it from the bottom up. And so that’s when we started the African American Wellness Project to educate African Americans how to deal with some of the aspects of early detection, disease prevention, exercise, and things like that. But more importantly, what to happen when you have a problem, when you engage with the system. What tools do you need? What resources do you need? How do you get the best possible outcomes?

Rovner: So just this month, the Centers for Disease Control and Prevention released a survey that found that 1 in 5 women reported being mistreated by medical professionals during pregnancy or delivery. For Black women, it was closer to 1 in 3. This is clearly some sort of systemic problem even in addition to racism, isn’t it? The health system is not functioning well.

LeNoir: We did a piece on this yesterday because it’s pretty clear that this has been a problem as long as I’ve been a physician. Where it’s really a problem is the increasing incidence of maternal mortality among Black women. And so now we know that there’s something going on that’s not being taken care of. There’s one classic video that we show when we talk about this subject. It was a Black physician in Illinois who was in a small Illinois town, was in the intensive care unit, and could not get the care that she needed when she had covid respiratory issues. And so what happened was she was broadcasting from the ICU about what was being given to her, what was being talked to her about, what was not being done. And her care … when her symptoms were ignored, how they delayed in doing stuff. And she died four days after she did this video. But, you know, we’re not surprised. I mean, I see these studies of Black people don’t like the health care system. You know, Kaiser Foundation [KFF] must have spent, I don’t know how many dollars, looking at a study we did five years ago. On every study I’ve seen, Black people are not happy with the health care system. They had 12,000 people. We had 400. But the conclusions are the same. And it’s not so much because of the availability or the capacity of the health care system to close the gap on the health of Blacks and others in this society. It has a lot to do with unconscious bias and the fact that the system doesn’t recognize itself. And no matter how much you call attention to it, it continues year after year, decade after decade.

Rovner: Is there anything we can do about unconscious bias? I mean, now we all know it’s there, but that doesn’t seem to get around to fixing it.

LeNoir: There’s several things that have been talked about: change in medical schools and showing them more positive images so that when they come out of medical school, then the only patients that we see are poor, Black, uneducated, you know, down and out, because those are the ones that go to the VA hospital or the public hospitals. So that’s one thing. And the other thing is a Black person should call it out when they see it. That’s the big thing. And I think we’re much too docile in the health care system. Here’s what I always would feel is that if we get as mad about health care that is disrespectful and unequal as we do when someone cuts in front of us in the Safeway line, we wouldn’t have that problem.

Rovner: Seriously, I mean, so you think people really just need to speak up more?

LeNoir: Absolutely. And in the piece that we did yesterday, the piece was entitled “Health Care System Not Equal,” don’t put up with it.

Rovner: What can Black doctors do and how do we get more of them? I know that’s a big piece of this is that people don’t feel represented within the health care provider community.

LeNoir: Well, unfortunately, we know and probably you kno, and probably most patients know, that a good doctor may not be the smartest person in a medical school. They may have a variety of different prejudices and a variety of different talents or a variety of different capacity to engage patients in a positive way. But our medical system and our system that screens students for medical school really kinda looks more at analytics. I mean, what kind of grades you make, what your SATs look like, what kind of symbolic social things did you do in order to get into medical school? And so, consequently, that shuts out a lot of students at a very early place in the system. A Black student often goes into the system determined to be a doctor, but he doesn’t have those resources, those networks, those connections. So he bombs out in junior college. I can remember I had a unique educational experience. I went to a college-educated … well, middle school in Cincinnati. It’s called Walnut Hills High School No. 3. [To get in] you took a test, and my dad was a YMCA executive. So we moved to Dallas, Texas, which was completely segregated. So I recognized immediately when I got there that the learning experience was different, but the education was not. Because I learned as a Black student in an environment that was college preparatory that … I didn’t have many allies in that many networks. And my parents, like so many Black parents, said, there’s no excuses. You can’t … don’t be coming on with the excuse of discrimination, when we were facing it every day. And more than that, on the positive side, we’re not being encouraged like the white students were. When I got to Dallas, you know, we didn’t have all the books, we didn’t have all the stuff, but the teachers knew I had talent, and they pushed me and pushed me, pushed me. So when I went off to a university by choice — could have gone to Stanford, all these other places — that I had the talent. Whereas back in my high school there were students as good as I was as students. And then they went off to the University of Texas, where I ultimately transferred, which didn’t seem to be a big deal for me because I thought Howard actually was harder. But they go to the University of Texas, they were from a segregated school, and then by themselves and they bomb out … and so consequently they don’t get to realize the bigger part of themselves. So getting back to this question that you asked five minutes ago. The reason is that the parameters to choose people for medical school need to start earlier, and they need to encourage Blacks, especially Black males of talent, so they can then go on and do some things that are necessary to get into medical school.

Rovner: Yeah, I’ve seen some programs that are trying to recruit kids as young as 11 or 12 to gauge interest in going into a medical career.

LeNoir: Yeah, well, I think that’s, you know, that’s so unnecessary. But it’s a game. I mean, who is it … the doctor … your old Dr. So-and-So didn’t go to Harvard. So the talents to be a good doctor, you know, I don’t know whether you feel this way. I don’t think you can teach judgment by the time somebody gets out of high school. You know, physicians, the first thing I think that you have to have is good judgment, and good judgment can be sometimes assessed on the MCAT and these other things that they use to prioritize things for that.

Rovner: I know the Association of American Medical Colleges is very concerned about the Supreme Court decision that came down earlier this year banning affirmative action. Are you also worried about what that might mean for medical school admissions?

LeNoir: Well, you have to realize that in California, we’ve been dealing with this since the Bakke decision, so we’ve not been able … and I served on medical school committees. I served on the University of California-San Diego, and one year here at UC-San Francisco, kinda chaired the clinical faculty, so had the chance to kind of get engaged in policy here. And what we found out was that you can’t change that. You have to change the system itself.

Rovner: Yeah, I mean, how worried are you, obviously in California, I guess, things have gone OK, but it’s going to be a big change at a lot of other medical schools about how they’re going to go about admitting their next classes and trying to at least further more culturally diverse classes of medical students.

LeNoir: Well, you know, California’s not done OK. I mean the percentage of California students — I believe diversity in California is probably 50% less than it was in the days when we had more liberal affirmative action guidelines. And so in those days, we were reporting 24, 25 Black students in these classes. That’s not happening anymore. So … I do worry. I mean, the reality is right in front of us. And I think that some schools … not necessarily the schools themselves, but the politicians that supervise these schools that have oversight over these schools are going to use this as a weapon. I know that already many of the attorney generals have sent letters to the university saying, look, I don’t care what you do, it’s not going to happen anymore. And the first persons to leave jobs now are diversity. Good jobs in diversity management … those jobs are disappearing almost as we speak.

Rovner: So if you could do just one thing that would help the system along to make things a little bit less unequal, what would it be?

LeNoir: I think it would be making certain that the system has the tools to detect two types of unconscious bias: this personal unconscious bias on the part of providers, but this institutional unconscious bias. And I think we have to attack that first. Institutions don’t look at African Americans the same way. And here’s … let me give you an example of what that falls out to. Let’s look at the statistics on vaccinations in ethnic groups. The impression is that Black people didn’t get vaccinated. But at the end of the day, if you looked at the numbers, we were vaccinated pretty much about the same level as the rest of America. But when we got ready to look at this, what we found out is hesitancy was based upon the fact that Black people did not trust the system. And institutions are expected to come out, here you are, you know, you’re part of an institution. You see a different doctor every week. And they come out to tell you you’re supposed to do your shots and stuff like that. Then Black people don’t believe that. They don’t go, they don’t go with that. And so consequently, at the end of the day, once the information came out and people got a chance to look at it, we started getting vaccinations at the same rate. But the people who are asking us to trust them had never attempted institutionally to obtain our trust. And so I think under those circumstances, that’s one of the reasons, that’s one of the things we most have to attack is institutional unconscious bias, institutional racism that’s covered over by the fact that we’re taking care of the poor. You know, we do all these things here and there, but poor people have opinions, too. And if we expect to change the system where everybody is treated equally, we have to look at what the institutional policies, or the institutional character or personality that results in the kinds of outcomes that we see in hospitals. And then we start looking at providers and other people. And they have to start engaging in this community now. There’ll be another pandemic, you know that. I know that. Probably this summer, this winter, things are going to … Look, what have doctors done? What have institutions done to gain the trust of the populations they serve? Probably nothing.

Rovner: Well, we’ve seen, you know, one of the things the pandemic has shown us is that now all Americans don’t trust institutions anymore. Is there maybe even a way to help everyone gain more trust? I mean, I guess it’s becoming much more obvious to at least the public health community that much of the public in general is distrustful of public health advice, of medical advice, of expertise in general.

LeNoir: Oh, yeah, there’s no question. This is not a unique problem among African Americans. I mean, it’s hard to trust a system where you have a problem and your doctor refers you somewhere and your next appointment is four months away. And here’s what the tragedy is: Nobody in Washington is talking about changing the system. I can remember the big furor over what were we going to do? Are we going to do single-payer? Are we going to do this? At least there was a dialog. Have you heard a dialog in Washington about changing this awful health care system that denies people access, overcharges them, and then is not blamed for the outcomes? I haven’t seen any of that. I haven’t seen anybody talk about health care at the national level. We used to do pieces, I remember years ago when I worked for CBS Radio, I tried to get a curriculum for hypertension, diabetes. Now you barely see anything on health except violence, and you don’t see too many pieces that people could use for health education. So I think the system is really broken and nobody’s … I don’t see any, even in the discussions last night [during the first Republican presidential primary debate], health never came up. You know, Ukraine, but not the health care system, which is really cheating us all.

Rovner: Yeah, I know. I mean, we’re … an entire Republican debate, and there was not a single mention of the Affordable Care Act or anything else that Republicans might want to do to fix a health care system that I think even Republican voters know is broken.

LeNoir: Yeah, I think that [Donald] Trump has sucked all the oxygen out of the room. And they’re not talking policy very much at all. I mean, even the undertones of the policy discussions have Trump all over it. So I think we’re in a very bad place, but I hate to see that escalating discussion on how to change the health care system, not just for the good of the poor people and Black people, I don’t think white people are really particularly excited about the system, and that dialog is not taking place.

Rovner: Is there anything you can offer that’s at all optimistic about this?

LeNoir: Well, no. No, I really can’t. As a doctor, I can tell you. Here’s the expanding issue. It just seems now that the solution to all the health problems that we have are the social determinants of health. I mean, you know, income and poverty and food, you know, issues and employment, all of that, they all contribute definitely to health outcomes. And so until we change those, then obviously the system, they say, will not change. Every chronic disease that I’ve looked at over the last 10 or 15 years, and especially recently, what Black people don’t do as well, it’s not because they don’t get into the system at the right time. They may even have early disease detection. It’s because they are not treated the same way. So if you look at statistics, all Black women have more deaths from breast cancer, our Black children have more asthma. It’s not because they don’t enter the system. It’s how they’re treated when they get into the system. So then going back to what we can do, we have to arm the patient, Black or white, to understand what you need to do to get the most effective outcomes. How do you select your primary care doctor? It’s critically important to everything that happens to you. How you’re able to challenge the system with a second opinion when you want that. To have an advocate, if you go into the hospital, not your brother or sister, but somebody who knows something about health care. So what we’re trying to do with the African American Wellness Project is to do that. We talk about early detection. Here’s the other problem with this. Now, I’d rather have penicillin than get rid of poverty or to get everybody a job. And in the New England Journal probably maybe a week ago, there was an editorial about how we as physicians should be able to manage the other elements, the social determinant elements, as part of our visits. Now I’ve barely got enough time to see the patients that I have. Now I’m supposed to get somebody food, a job and all that … but I’m not saying that that doesn’t need to change. It does. But if every solution to the problem of health equity is the social determinants like I’m seeing, then I mean, we might not get penicillin, but we may get somebody a job. But I think that that that process is important. It is important. But if you look at studies that at the VA, especially with men with prostate cancer, or if you have prostate cancer and … everything’s done exactly the same: early detection, the PSAs, the biopsy, the identification — the prostate is done not by biopsy, but by MRI — and they treat it the same, Black people do better. And the same thing is true with breast cancer and other chronic diseases. All these studies. You can go to PubMed, and you look at all these studies and you see every study talks about that, that the reason that they’re not doing as well, is because of the social determinants of health. Now, I mean, I appreciate that, but I’m not going to wait for everybody to get a job before I try to get a stent put in my artery, or I try to get some concern for my position. So to go back to your question again that you asked me five minutes ago, is that we need to talk to people about the system they face, and they need to go into it with less naivete and more organization. And that’s what we try to do with the African American Wellness [Project]. We try to provide you with that information and the tools that you need when you need to go into the system. If you need to know what questions to ask … we’ll tell you how to do that. One of the things I found out is I engage social media as a way to talk to people, because I’ve always used traditional media and, boy, I recognize now that you have to do it a little differently. You can’t do it exactly the same way. And so I just think we have to prepare people and we have to tell them the things that they need to do to recognize and understand before they enter the system. Until we start to get more serious in this country, about that dialog on our health care system, I think the individual is the only way we can approach it.

Rovner: Dr. LeNoir, thank you. Thank you so much for all of what you’re doing and thank you for joining us today.

LeNoir: Thank you for having me.

Rovner: OK, that’s our show for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks, as always to our amazing engineer, Francis Ying. And also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me or X me or whatever. I’m still @jrovner, also on Bluesky and Threads. I hope you enjoyed this special episode. We’ll be back with our regular podcast panel after Labor Day. Until then, be healthy.

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Statement from Secretary Becerra on International Overdose Awareness Day

HHS Gov News - August 31, 2023
Overdose Awareness day press release

How Far Will Montana’s Push to Remove Lead from School Drinking Water Go?

Kaiser Health News:States - August 31, 2023

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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HHS Secretary Xavier Becerra Declares Public Health Emergency and ASPR Deploys Personnel to Florida to Respond to Hurricane Idalia

HHS Gov News - August 30, 2023
HHS Secretary Xavier Becerra declared a Public Health Emergency (PHE) for the state of Florida to address the health impacts of Hurricane Idalia

A Move to Cut Drug Prices Has Patients With Rare Diseases Worried

Kaiser Health News:States - August 30, 2023

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But Walker remains unconvinced.

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

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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5 Things to Know About the New Drug Pricing Negotiations

The Biden administration has picked the first 10 high-priced prescription drugs subject to federal price negotiations, taking a swipe at the powerful pharmaceutical industry. It marks a major turning point in a long-fought battle to control ever-rising drug prices for seniors and, eventually, other Americans.

Under the 2022 Inflation Reduction Act, Congress gave the federal government the power to negotiate prices for certain high-cost drugs under Medicare. The list of drugs selected by the Centers for Medicare & Medicaid Services will grow over time.

The first eligible drugs treat diabetes, blood clots, blood cancers, arthritis, and heart disease — and accounted for about $50 billion in spending from June 2022 to May 2023.

The United States is clearly an outlier on drug costs, with drugmakers charging Americans many times more than residents of other countries “simply because they could,” Biden said Tuesday at the White House. “I think it’s outrageous. That’s why these negotiations matter.”

He added, “We’re going to keep standing up to Big Pharma and we’re not going to back down.”

Democratic lawmakers cheered the announcement, and the pharmaceutical industry, which has filed a raft of lawsuits against the law, condemned it.

The companies have until Oct. 2 to present data on their drugs to CMS, which will make initial price offers in February, setting off negotiations set to end next August. The prices would go into effect in January 2026.

Here are five things to know about the impact:

1. How important is this step?

Medicare has long been in control of the prices for its services, setting physician payments and hospital payments for about 65 million Medicare beneficiaries. But it was previously prohibited from involvement in pricing prescription drugs, which it started covering in 2006.

Until now the drug industry has successfully fought off price negotiations with Washington, although in most of the rest of the world governments set prices for medicines. While the first 10 drugs selected for negotiations are used by a minority of patients — 9 million — CMS plans by 2029 to have negotiated prices for 50 drugs on the market.

“There’s a symbolic impact, but also Medicare spent $50 billion on these 10 drugs in a 12-month period. That’s a lot of money,” said Juliette Cubanski, deputy director of KFF’s analysis of Medicare policy.

The long-term consequences of the new policy are unknown, said Alice Chen, vice dean for research at University of Southern California’s Sol Price School of Public Policy. The drug industry says the negotiations are essentially price controls that will stifle drug development, but the Congressional Budget Office estimated only a few drugs would not be developed each year as a result of the policy.

Biden administration officials say reining in drug prices is key to slowing the skyrocketing costs of U.S. health care.

2. How will the negotiations affect Medicare patients?

In some cases, patients may save a lot of money, but the main thrust of Medicare price negotiation policy is to provide savings to the Medicare program — and taxpayers — by lowering its overall costs.

The drugs selected by CMS range from specialized, hyper-expensive drugs like the cancer pill Imbruvica (used by about 26,000 patients in 2021 at an annual price of $121,000 per patient) to extremely common medications such as Eliquis (a blood thinner for which Medicare paid about $4,000 each for 3.1 million patients).

While the negotiations could help patients whose Medicare drug plans require them to make large copayments for drugs, the relief for patients will come from another segment of the Inflation Reduction Act that caps drug spending by Medicare recipients at $2,000 per year starting in 2025.

3. What do the Medicare price negotiations mean for those not on Medicare?

One theory is that reducing the prices drug companies can charge in Medicare will lead them to increase prices for the privately insured.

But that would be true only if companies aren’t already pricing their drugs as high as the private market will bear, said Tricia Neuman, executive director of KFF’s program on Medicare policy.

Another theory is that Medicare price negotiations will equip private health plans to drive a harder bargain. David Mitchell, president of the advocacy group Patients for Affordable Drugs, predicted that disclosure of negotiated Medicare prices “will embolden and arm private sector negotiators to seek that lower price for those they cover.”

Stacie B. Dusetzina, a professor of health policy at Vanderbilt University, said the effect on pricing outside Medicare isn’t clear.

“I’d hedge my bet that it doesn’t change,” she said.

Nonetheless, Dusetzina described one way it could: Because the government will be selecting drugs for Medicare negotiations based partly on the listed gross prices for the drugs — distinct from the net cost after rebates are taken into account — the process could give drug companies an incentive to lower the list prices and narrow the gap between gross and net. That could benefit people outside Medicare whose out-of-pocket payments are pegged to the list prices, she said.

4. What are drug companies doing to stop this?

Even though negotiated prices won’t take effect until 2026, drug companies haven’t wasted time turning to the courts to try to stop the new program in its tracks.

At least six drug companies have filed lawsuits to halt the Medicare drug negotiation program, as have the U.S. Chamber of Commerce and the Pharmaceutical Research and Manufacturers of America, known as PhRMA.

The lawsuits include a variety of legal arguments. Merck & Co., Johnson & Johnson, and Bristol Myers Squibb are among the companies arguing their First Amendment rights are being violated because the program would force them to make statements on negotiated prices they believe are untrue. Lawsuits also say the program unconstitutionally coerces drugmakers into selling their products at inadequate prices.

“It is akin to the Government taking your car on terms that you would never voluntarily accept and threatening to also take your house if you do not ‘agree’ that the taking was ‘fair,’” Janssen, part of Johnson & Johnson, wrote in its lawsuit.

Nicholas Bagley, a law professor at the University of Michigan, predicted the lawsuits would fail because Medicare is a voluntary program for drug companies, and those wishing to participate must abide by its rules.

5. What if a drug suddenly gets cheaper by 2026?

In theory, it could happen. Under guidelines CMS issued this year, the agency will cancel or adjourn negotiations on any drug on its list if a cheaper copycat version enters the market and finds substantial buyers.

According to company statements this year, two biosimilar versions of Stelara, a Johnson & Johnson drug on the list, are prepared to launch in early 2025. If they succeed, it would presumably scotch CMS’ plan to demand a lower price for Stelara.

Other drugs on the list have managed to maintain exclusive rights for decades. For example, Enbrel, which the FDA first approved in 1998 and cost Medicare $1.5 billion in 2021, will not face competition until 2029 at the earliest.

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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Exclusive: CMS Study Sabotages Efforts to Bolster Nursing Home Staffing, Advocates Say

The Biden administration last year promised to establish minimum staffing levels for the nation’s roughly 15,000 nursing homes. It was the centerpiece of an agenda to overhaul an industry the government said was rife with substandard care and failures to follow federal quality rules.

But a research study the Centers for Medicare & Medicaid Services commissioned to identify the appropriate level of staffing made no specific recommendations and analyzed only staffing levels lower than what the previous major federal evaluation had considered best, according to a copy of the study reviewed Monday by KFF Health News. Instead, the new study said there was no single staffing level that would guarantee quality care, although the report estimated that higher staffing levels would lead to fewer hospitalizations and emergency room visits, faster care, and fewer failures to provide care.

Patient advocates said the report was the latest sign that the administration would fall short of its pledge to establish robust staffing levels to protect the 1.2 million Americans in skilled nursing facilities. Already, the administration is six months behind its self-imposed deadline of February to propose new rules. Those proposals, which have not been released, have been under evaluation since May by the Office of Management and Budget. The study, dated June 2023, has not been formally released either, but a copy was posted on the CMS website.

“It’s honestly heartbreaking,” said Richard Mollot, executive director of the Long Term Care Community Coalition, a nonprofit that advocates for nursing home patients in New York state. “I just don’t see how this doesn’t ultimately put more residents at risk of neglect and abuse. Putting the government’s imprimatur on a standard that is patently unsafe is going to make it much more difficult for surveyors to hold facilities accountable for the harm caused by understaffing nursing homes.”

For months, the nursing home industry has been lobbying strenuously against a uniform ratio of patients to nurses and aides. “What is clear as you look across the country is every nursing home is unique and a one-size-fits-all approach does not work,” said Holly Harmon, senior vice president of quality, regulatory, and clinical services at the American Health Care Association, an industry trade group.

Nursing home groups have emphasized the widespread difficulty in finding workers willing to fill existing certified nursing assistant jobs, which are often grueling and pay less than what workers can make at retail stores. Homes say their licensed nurses are often drawn away by other jobs, such as better-paying hospital positions. “The workforce challenges are real,” said Katie Smith Sloan, president and CEO of LeadingAge, an association that represents nonprofit nursing homes.

The industry has also argued that if the government wants it to hire more workers it needs to increase the payments it makes through state Medicaid programs, which are the largest payor for nursing home care. Advocates and some researchers have argued that nursing homes, particularly for-profit ones, can afford to pay employees more and hire additional staff if they forsake some of the profits they give investors.

“Certainly, facilities haven’t put all the dollars back into direct care over the years,” said David Grabowski, a professor of health care policy at Harvard Medical School. “But for certain facilities, it’s going to be a big lift to pay for” higher staffing levels, he said in an interview last week.

The administration last week declined to discuss the status of its rule. “The Centers for Medicare & Medicaid Services (CMS) is committed to holding nursing homes accountable for protecting health and safety for all residents, and adequate staffing is critical to this effort,” CMS press secretary Sara Lonardo said in an email. “We look forward to releasing our proposals, as well as the nursing home staffing study, soon.”

The study has been widely anticipated, both because of the central role the administration said it would play in its policy and because the last major CMS study, conducted in 2001, had concluded that nursing home care improves as staffing increases up to the level of about one worker for every six residents. The formal metric for that staffing level was 4.1 staff hours per resident per day, which is calculated by dividing the number of total hours worked by nurses and aides on duty daily by the number of residents present each day.

CMS never adopted that staffing ratio and instead gave each nursing home discretion to determine a reasonable staffing level. Regulators rarely cite nursing homes for insufficient staffing, even though independent researchers have concluded low staffing is the root of many nursing home injuries. Too few nurse aides, for instance, often means immobile residents are not repositioned in bed, causing bedsores that can lead to infection. Low staffing also is often responsible for indignities residents face, such as being left in soiled bedsheets for hours.

The new research was conducted by Abt Associates, a regular contractor for CMS that also performed the 2001 study. But the report, in an implicit disagreement with its predecessor, concluded there was “no obvious plateau at which quality and safety are maximized or ‘cliff’ below which quality and safety steeply decline.” Abt did not immediately respond to requests for comment on its study.

The study evaluated four minimum staffing levels, all of which were below the 4.1 daily staff hours that the prior study had identified as ideal. The highest was 3.88 daily staff hours. At that level, the study estimated 0.6% of residents would get delayed care and 0.002% would not get needed care. It also said that staffing level would result in 12,100 fewer hospitalizations of Medicare residents and 14,800 fewer emergency room visits. The report said three-quarters of nursing homes would need to add staff to meet that level and that it would cost $5.3 billion extra each year.

The lowest staffing level the report analyzed was 3.3 daily staffing hours. At that level, the report said, 3.3% of residents would get delayed care and 0.04% would not get needed care. That level would reduce hospitalizations of Medicare residents by 5,800 and lead to 4,500 fewer emergency room visits. More than half of nursing homes would have to increase staff levels to meet that ratio, the report said, and it would cost $1.5 billion more each year.

Charlene Harrington, a professor emeritus of nursing at the University of California-San Francisco, said CMS “sabotaged” the push for sufficiently high staffing through the instructions it gave its contractor. “Every threshold they looked at was below 4.1,” she said. “How can that possibly be a decent study? It’s just unacceptable.”

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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