Southern Bureau Archives - KFF Health News

As Foundation for ‘Excited Delirium’ Diagnosis Cracks, Fallout Spreads

Renuka Rayasam and Markian Hawryluk and Samantha Young — Wed, 13 Dec 2023 10:00:00 +0000

When Angelo Quinto’s family learned that officials blamed his 2020 death on “excited delirium,” a term they had never heard before, they couldn’t believe it. To them, it was obvious the science behind the diagnosis wasn’t real.

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Watch: She Had a Home and a Good-Paying Job. Then Illness and Debt Upended It All.

Noam N. Levey and Hannah Norman, KFF Health News — Mon, 11 Dec 2023 10:00:00 +0000

Sharon Woodward used to travel the country as a medical technician. She made good money and prided herself on her skills.

But in her mid-40s, Woodward retired after being diagnosed with a debilitating form of arthritis. Her condition required expensive drugs and regular medical care, which left her with more than $20,000 in medical debts.

She had no option but to move out of her home and restart her life in a small town in Virginia’s Shenandoah Valley. At times, she has relied on food banks to get enough to eat.

Woodward is one of 100 million people in the U.S. with health care debt. Watch her story here.

About This Project

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

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

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

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

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

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

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Being Black and Pregnant in the Deep South Can Be a Dangerous Combination

Lauren Sausser — Fri, 08 Dec 2023 10:00:00 +0000

O’laysha Davis was a few weeks shy of her due date when in mid-August she decided it was time to switch doctors.

Davis had planned to give birth at a small community hospital about 20 minutes from her home in North Charleston, South Carolina. But that changed when her medical team started repeatedly calling her cellphone and pressuring her to come to the hospital and deliver the baby.

Davis said she’d told her doctor on more than one occasion that she was opposed to inducing labor early. Eventually, she reached her wits’ end.

“It was ridiculous,” said Davis, 33. “I don’t feel heard most of the time. I feel like it’s their way or no way, you know? Like you don’t have a choice.”

Davis had given birth twice before and knew from experience that Black women, like herself, and their infants face higher health risks during pregnancy and childbirth. In 2021, Davis lost a baby in the womb after a dangerous pregnancy complication in her first trimester.

“I was very fearful that the same thing would happen,” Davis said when she found out in late 2022 that she was pregnant again.

Her fears weren’t unfounded. Across South Carolina, Black infant and maternal deaths are troubling. About an hour and a half northwest of Charleston in Orangeburg County, the infant death rate was the highest in the state in 2021. Higher, in fact, than it was 50 years earlier in 1971, according to data KFF Health News obtained via a Freedom of Information Act request from the state health department. All but one of the 17 infants who died in 2021 in Orangeburg was Black.

Statistics like this scared Davis. But it was a horror story out of Georgia that really caught her attention: In July, a Black infant was decapitated during delivery by an obstetrician who allegedly used excessive force. Davis was eight months pregnant when the news broke.

“Something’s terribly wrong,” she recalled thinking.

‘Moving in the Wrong Direction’

Being Black has always been dangerous for pregnant women and infants in the South. The origin story of modern reproductive medicine can be traced to experiments conducted on Black enslaved women in Alabama during the 1840s by physician J. Marion Sims, the so-called Father of Gynecology, who subjected his patients to painful pelvic surgeries without anesthesia and drugged them with opium.

Sims, a native South Carolinian who is memorialized on the Statehouse grounds in Columbia, is credited with inventing an early version of the vaginal speculum, which he designed after probing an enslaved woman named Betsey with the bent handle of a spoon.

Fast-forward nearly 200 years, following a legacy of systemic discrimination that has prevented some Black families from getting health care: Poor outcomes for Black women and babies across the United States are alarmingly high compared with white patients.

These problems aren’t unique to the South. In places such as Kansas, Arizona, and Wisconsin, for example, Black infants die at more than double the rate of white babies. In Flint, Michigan, where more than half of residents are Black, the infant mortality rate for all babies in 2021 exceeded the rate in any Southern state.

But in Deep South states like South Carolina, Louisiana, and Mississippi, infant mortality rates in rural counties, especially for Black babies, often resemble those in much poorer parts of the world.

Things are poised to get worse. More than one year after the U.S. Supreme Court issued its decision in Dobbs v. Jackson Women’s Health Organization, allowing state legislatures to outlaw abortion, most states in the South have passed either full or partial bans. Both research and preliminary data suggest this will further jeopardize Black women and babies.

In 2021, 42% of all reported abortions in the United States were obtained by Black women, accounting for a larger share than any other race, according to KFF data. And more than half of all Black Americans live in the South, where many of the country’s strictest abortion policies were enacted this year and last.

Already, birth rates in states that banned or restricted access to abortion have increased since the Dobbs ruling. State-level abortion bans will undoubtedly prove fatal for some people, particularly Black women and children, who are more likely to die before, during, and after childbirth than white women and children.

“There is so much anger,” said Kelli Parker, director of communications and marketing for the nonprofit Women’s Rights and Empowerment Network. “This type of legislation uniquely impacts women of color and other historically marginalized groups.”

In Texas, for example, infant mortality data from the Department of State Health Services shows the number of babies who died during their first year of life significantly increased after lawmakers passed a six-week abortion ban in 2021, according to data obtained by CNN through a public records request. In Texas, Black babies die before their 1st birthday at a rate more than twice that of white infants. That’s because the health of the mother often translates to the health of the infant, and Black women face much higher pregnancy risks, such as high blood pressure, stroke, and hemorrhage.

In South Carolina, where the state Supreme Court upheld a ban that outlaws abortion if fetal cardiac activity can be detected, non-Hispanic Black infants are also more than twice as likely to die during their first year than non-Hispanic white infants. And the state’s Black infant mortality rate increased by nearly 40% from 2017 to 2021.

Meanwhile, non-Hispanic Black women in South Carolina experienced a 67% higher pregnancy-related mortality ratio compared with their white counterparts in 2018 and 2019, according to the latest data from the state’s Maternal Morbidity and Mortality Review Committee.

“We have a lot of work to do,” said Sarah Knox, senior director of policy and advocacy at the nonprofit Children’s Trust of South Carolina. “Unfortunately, our latest data shows we are moving in the wrong direction.”

Most states haven’t released infant and maternal death data that reflects the impact of the Dobbs decision. But maternal health experts aren’t optimistic.

A KFF survey conducted this year of 569 OB-GYNs found that most doctors reported the Dobbs decision has worsened pregnancy-related mortality and exacerbated racial and ethnic inequities in maternal health.

But Dobbs isn’t the only factor. Across the South, public health experts point to a confluence of things: the closure of rural hospitals, the scarcity of doctors and midwives, the pervasiveness of obesity and chronic disease, and many states’ refusal to expand Medicaid under the Affordable Care Act.

In many cases, though, the intersection of poverty and structural racism in medicine is to blame for the deaths of Black women and their infants.

A KFF survey released this week found Black patients regularly said their health care provider assumed something about them without asking; suggested they were personally at fault for a health problem; ignored a direct request or question; or refused to prescribe them pain medication they thought they needed. More than half of all Black respondents also said they prepare to visit their health care provider by expecting insults or by being very careful about their appearance — or both.

“People are tired of being bullied by their providers,” said Tiffany Townsend, a midwife and the owner of De la Flor Midwifery in Columbia, South Carolina.

In the KFF survey, Black women reported the highest rates of unfair treatment, with 1 in 5 saying a health care provider treated them differently because of their racial or ethnic background. And about twice as many Black adults who were pregnant or gave birth in the past decade said they were refused pain medicine they thought they needed compared with white adults.

The nation’s Black maternal mortality rate is almost three times as high as the rate for white women. Townsend, one of the few Black midwives practicing in South Carolina, said that’s because doctors often ignore their patients’ complaints until it’s too late.

“They don’t listen,” she said.

‘Using Their Voice’

In March 2012, Kim Smith was about 22 weeks pregnant when she felt an “unbelievable pain” in the upper-right side of her abdomen. She was immediately admitted to a hospital in Lexington, South Carolina, where she was diagnosed with HELLP syndrome, a severe case of a pregnancy condition called preeclampsia, which is marked by high blood pressure. She’d been tested for preeclampsia a few weeks earlier and the results were negative.

While the preeclampsia rate is much higher among Black women than white women, the diagnosis still came as a shock to Smith, who liked to run, taught aerobics classes in college, and thought of herself as a healthy person. She hadn’t considered the possibility of a high-risk pregnancy.

“I was placed in a wheelchair and rushed to get an ultrasound,” she remembered after arriving at the emergency room. The first ultrasound showed a faint heartbeat, but within a few minutes, it had stopped. Smith was prepped for labor and delivery, but it was too late. The baby she had named Lauren Kelly didn’t survive.

More than half of all 516 fetal deaths reported that year in South Carolina were linked to Black mothers.

The loss of her daughter devastated Smith. She has since given birth to three boys and channeled the pain of her first pregnancy into the development of a patient navigation app called “Lauren,” funded by the South Carolina Research Authority, which she hopes will be used to spare other women from a similar loss.

The app is designed to allow pregnant and postpartum women to track their stress levels and vital signs, including their blood pressure, and to automatically relay those readings to their physicians. While not a diagnostic tool, Smith intends for the app to empower patients with real-time information so they can identify potential problems early and use it to advocate for themselves.

“You have to use your voice. You have to speak up,” said Smith, who wants the Lauren app to be made available free to pregnant women enrolled in Medicaid. “I’m still finding that people are not using their voice when they go into the doctor’s.”

New Research

Across the South, researchers are trying to identify solutions to improve health outcomes for mothers and babies. “Nothing seems to be moving the needle,” said Joseph Biggio, a maternal-fetal specialist at Ochsner Health in New Orleans.

The National Institutes of Health recently awarded Ochsner Health and its partners a $16.5 million grant to establish the Southern Center for Maternal Health Equity to address Louisiana’s high maternal mortality rate. Part of that research will involve finding ways to deliver care in rural parts of the state where hospitals have closed, high-risk specialists don’t exist, and pregnant women are disproportionately Black.

Biggio said the new research center will also compare birth outcomes in Louisiana to those in neighboring Mississippi, where infant and maternal mortality rates are the highest in the country, according to the Centers for Disease Control and Prevention.

A key difference between these two Deep South states: Lawmakers in Louisiana have expanded access to the Medicaid program under the Affordable Care Act, while lawmakers in Mississippi haven’t.

Women in most states who qualify for Medicaid during pregnancy are also covered for 12 months after they give birth. But every year, many childless women in Southern states are not eligible for the low-income health insurance program until they become pregnant. Medicaid expansion, as it was designed under the Affordable Care Act, would fill this gap by loosening eligibility restrictions, but most states in the South haven’t adopted the expansion.

Some health care policy experts believe that covering women before they become pregnant and between pregnancies would reduce the burden of obesity, diabetes, and hypertension, and the risks those conditions pose to women and infants.

Tracking long-term improvement is crucial because success won’t be achieved overnight, said John Simpkins, president of the North Carolina-based MDC, a nonprofit focused on improving racial equity and economic mobility in the South.

“If we’re talking about population health improvements, then really the intervention should be beginning with kids who are being born right now, and following them through adulthood, and then probably their kids,” Simpkins said. Medicaid expansion, for example, could raise families out of poverty, but those benefits might not be realized for another generation, he said.

“I’ve found that the things that work the most are sustained investment over time,” he said.

But this work isn’t relegated to the South. In the majority-Black city of Flint, Michigan, for example, researchers are poised to launch in 2024 a multiyear project called Rx Kids to determine if direct, unrestricted cash payments to pregnant women and new moms improve birth outcomes.

“This is standard in other countries. This is common, basic sense,” said Mona Hanna-Attisha, a pediatrician and the associate dean of public health at the Michigan State University College of Human Medicine, who is leading the Flint research.

Poverty tends to peak just before a woman gives birth, she said, and the project in Flint will attempt to offset that hardship by offering every woman in the city who becomes pregnant, regardless of race, a payment of $1,500 at the halfway point of her pregnancy and then an additional $500 a month during the first year of her infant’s life, for a total of $7,500.

“This is designed to address this critical window, both economically and neurodevelopmentally,” Hanna-Attisha said. “It’s fundamentally how we are supposed to take care of each other. And it is not revolutionary.”

‘Extra Bad for Black Women’

Back in Charleston, the first seeds of concern had been planted during the first half of O’laysha Davis’ pregnancy when, she said, an OB-GYN prescribed a drug to control high blood pressure. She’d declined to take it — against her doctor’s guidance — because her blood pressure is normally “up and down,” she said. It wasn’t unusual for her reading to be high at the doctor’s office and normal at home, a common phenomenon known as “white coat hypertension.”

But high blood pressure during pregnancy, if left untreated, can be fatal for moms and babies. Along with medication, Davis’ doctor recommended delivering the infant a few weeks before her due date to avoid complications.

It wasn’t necessarily bad medical advice, but Davis feared the risks associated with inducing labor early, knowing that babies born after 39 weeks of gestation are generally healthier.

“I’m not getting an induction. Don’t schedule me,” she told the doctor.

Her OB-GYN scheduled one anyway. But on the morning of the scheduled induction, Davis received mixed messages from the hospital. First, there wasn’t a hospital bed available, so they told her not to come in. Later that day, though, in phone calls to Davis and her emergency contact, they advised that she come in immediately.

Finally, Davis said, she lost trust in her medical team. Compelled to find someone who would listen, she Googled the names of midwives in Charleston.

Davis reached midwife Nicole Lavallee by phone.

“I have the same conversation multiple times a week,” Lavallee said, with women who feel their medical team has stopped listening to them. “It’s extra bad for Black women.”

Lavallee connected Davis with a doula, then helped her make an appointment at another birthing hospital in Charleston.

Davis avoided an induction. She felt the first pains of labor at home and then delivered her baby — a girl named Journee Divine — on Aug. 31, a few days shy of her due date, at the Medical University of South Carolina.

“I labored at home, which is what I wanted to do to begin with,” she said. “I’m going to do it my way.”

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Dodging the Medicare Enrollment Deadline Can Be Costly

Susan Jaffe — Thu, 07 Dec 2023 17:15:00 +0000

Angela M. Du Bois, a retired software tester in Durham, North Carolina, wasn’t looking to replace her UnitedHealthcare Medicare Advantage plan. She wasn’t concerned as the Dec. 7 deadline approached for choosing another of the privately run health insurance alternatives to original Medicare.

But then something caught her attention: When she went to her doctor last month, she learned that the doctor and the hospital where she works will not accept her insurance next year.

Faced with either finding a new doctor or finding a new plan, Du Bois said the decision was easy. “I’m sticking with her because she knows everything about me,” she said of her doctor, whom she’s been seeing for more than a decade.

Du Bois isn’t the only one tuning out when commercials about the open enrollment deadline flood the airwaves each year — even though there could be good reasons to shop around. But sifting through the offerings has become such an ordeal that few people want to repeat it. Avoidance is so rampant that only 10% of beneficiaries switched Medicare Advantage plans in 2019.

Once open enrollment ends, there are limited options for a do-over. People in Medicare Advantage plans can go to another Advantage plan or back to the original, government-run Medicare from January through March. And the Centers for Medicare & Medicaid Services has expanded the criteria for granting a “special enrollment period” to make changes in drug or Advantage plans anytime.

But most seniors will generally allow their existing policy to renew automatically, like it or not.

Keeping her doctor was not Du Bois’ only reason for switching plans, though. With help from Senior PharmAssist, a Durham nonprofit that advises seniors about Medicare, she found a Humana Medicare Advantage plan that would not only be accepted by her providers but also cover her medications — saving her more than $14,000 a year, said Gina Upchurch, the group’s executive director.

Senior PharmAssist is one of the federally funded State Health Insurance Assistance Programs, known as SHIPs, available across the country to provide unbiased assistance during the open enrollment season and year-round to help beneficiaries appeal coverage denials and iron out other problems.

“Many people are simply overwhelmed by the calls, ads, the sheer number of choices, and this ‘choice overload’ contributes to decision-making paralysis,” said Upchurch. Seniors in Durham have as many as 74 Advantage plans and 20 drug-only plans to choose from, she said.

Upchurch said the big insurance companies like the way the system works now, with few customers inclined to explore other plans. “They call it ‘stickiness,’” she said. “If we had fewer and clear choices — an apple, orange, grape, or banana — most people would review options.”

In Washington state, one woman switched from a plan she had had for more than a decade to one that will cover all her drugs and next year will save an estimated $7,240, according to Tim Smolen, director of the state’s SHIP, Statewide Health Insurance Benefits Advisors.

In Northern California, another woman changed drug plans for the first time since 2012, and her current premium of $86 will plummet to 40 cents a month next year, an annual savings of about $1,000, said Pam Smith, a local director for California’s SHIP, called the Health Insurance Counseling & Advocacy Program.

And in Ohio, a woman sought help after learning that her monthly copayment for the blood thinner Eliquis would rise from $102 to $2,173 next year. A counselor with Ohio’s SHIP found another plan that will cover all her medications for the year and cost her just $1,760. If she stuck with her current plan, she would be paying an additional $24,852 for all her drugs next year, said Chris Reeg, who directs that state’s program.

In some cases, CMS tries to persuade beneficiaries to switch. Since 2012, it has sent letters every year to thousands of beneficiaries in poorly performing Advantage and drug plans, encouraging them to consider other options. These are plans that have received less than three out of five stars for three years from CMS.

“You may want to compare your plan to other plans available in your area and decide if it’s still right for you,” the letter says.

CMS allows low-scoring plans to continue to operate. In an unusual move, officials recently found that one plan had such a terrible track record that they will terminate its contract with government health programs next December.

CMS also contacts people about changing plans during open enrollment if they get a subsidy — called “extra help” — that pays for their drug plan’s monthly premium and some out-of-pocket expenses. Because some premiums will be more expensive next year, CMS is warning beneficiaries that they could be in for a surprise: a monthly bill to cover cost increases the subsidy doesn’t cover.

But many beneficiaries receive no such nudge from the government to find out if there is a better, less expensive plan that meets their needs and includes their health care providers or drugs.

That leaves many people with Medicare drug or Advantage plans on their own to decipher any changes to their plans while there is still time to enroll in another. Insurers are required to alert members with an “annual notice of change,” a booklet often more than two dozen pages long. Unless they plow through it, they may discover in January that their premiums have increased, the provider network has changed, or some drugs are no longer covered. If a drug plan isn’t offered the next year and the beneficiary doesn’t pick a new one, the insurer will select a plan of its choosing, without considering costs or needed drug coverage.

“Every year, our call volume skyrockets in January when folks get invoices for that new premium,” said Reeg, the Ohio program director. At that point, Medicare Advantage members have until March 30 to switch to another plan or enroll in government-run Medicare. There’s no similar grace period for people with stand-alone drug plans. “They are locked into that plan for the calendar year.”

One cost-saving option is the government’s Medicare Savings Program, which helps low-income beneficiaries pay their monthly premium for Medicare Part B, which covers doctor visits and other outpatient services. The Biden administration’s changes in eligibility for subsidies announced in September will extend financial assistance to an estimated 860,000 people — if they apply. In the past, only about half of those eligible applied.

Fixing a mistake after the open enrollment period ends Dec. 7 is easy for some people. Individuals who receive “extra help” to pay for drug plan premiums and those who have a subsidy to pay for Medicare’s Part B can change drug plans every three months.

At any time, beneficiaries can switch to a Medicare Advantage plan that earns the top five-star rating from CMS, if one is available. “We’ve been able to use those five-star plans as a safety net,” said Reeg, the Ohio SHIP director.

Other beneficiaries may be able to get a “special enrollment period” to switch plans after the open enrollment ends if they meet certain conditions. Local SHIP offices can help people make any of these changes when possible.

Reeg spends a lot of time trying to ensure that unwelcome surprises — like a drug that isn’t covered — don’t happen in the first place. “What we want to do is proactively educate Medicare patients so they know that they can go to the doctors and hospitals they want to go to in the upcoming year,” she said.

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Candidates Clashed But Avoided Talk of Abortion at 4th GOP Primary Debate

KFF Health News and PolitiFact staffs — Thu, 07 Dec 2023 14:00:00 +0000

Raised voices and sharp words marked Wednesday night’s fourth Republican presidential primary debate as four candidates argued about everything from their own electability to the continued front-runner status of former President Donald Trump. Abortion was never mentioned.

Florida Gov. Ron DeSantis, former South Carolina Gov. Nikki Haley, entrepreneur Vivek Ramaswamy, and former New Jersey Gov. Chris Christie faced off in Tuscaloosa, Alabama, just 40 days before the Iowa caucuses. They sparred over antisemitism and the war between Israel and Hamas as well as the conflict in Ukraine. There were references to cryptocurrency and TikTok. Candidates also attempted to tackle inflation, corruption, border issues, and the inner workings of the Department of Justice, among other things.

As he did in the previous three meetings, Trump opted not to participate, this time attending a fundraiser in Florida. The event was moderated by NewsNation’s Elizabeth Vargas; Megyn Kelly, host of “The Megyn Kelly Show” on SiriusXM; and Eliana Johnson, editor-in-chief of The Washington Free Beacon.

Our PolitiFact partners fact-checked the candidates in real time. You can read the full coverage here.

Health care — in the form of the Affordable Care Act — took center stage during the debate’s last minutes. Until recently, it seemed that the Republican Party had all but abandoned its years-long effort to repeal and replace Obamacare. But Trump resurrected the campaign with a social media post over Thanksgiving weekend describing the GOP’s failure to achieve this goal during his first term as “a low point for the Republican Party.”

DeSantis, who seemed to pick up on some of Trump’s ACA criticisms, has since promised that he will have a health plan that is “different and better.” He was challenged by debate moderators with the question: “Why should Americans trust you more than any other Republicans who have disappointed them on this issue?” In his response, he offered key buzzwords but few specifics. “You need price transparency. You need to hold the pharmaceuticals accountable. You need to hold big insurance and big government accountable, and we’re gonna get that done.”

Ramaswamy followed with his own take, involving similar concepts but different words. “We need to start having diverse insurance options in a competitive marketplace that cover actual health, preventative medicine, diet, exercise, lifestyle, and otherwise.”

Throughout the evening, some of the most heated clashes came as candidates sparred over transgender issues and gender-affirming care. PolitiFact examined some of these claims:

DeSantis: “I did a bill in Florida to stop the gender mutilation of minors. It’s child abuse and it’s wrong. [Nikki Haley] opposes that bill. She thinks it’s fine and the law shouldn’t get involved with it.”

This claim has two parts, and each needs more context.

In May 2023, the Florida Legislature passed a bill that banned gender-affirming surgeries for minors. Experts told PolitiFact that gender-affirming surgeries are not the same as genital mutilation. And the law didn’t ban just surgeries — it banned all gender-affirming medical care, including puberty blockers and cross-sex hormones, which are supported by most major U.S. medical organizations.

Surgeries are rarely provided as part of gender-affirming care for minors.

In a June CBS interview, Haley said that when it comes to determining what care should be available for transgender youth, the “law should stay out of it, and I think parents should handle it.” She followed up by saying, “When that child becomes 18, if they want to make more of a permanent change, they can do that.”

Haley’s campaign pointed to a May ABC appearance in which she said that a minor shouldn’t have a “gender-changing procedure” and opposed “taxpayer dollars” funding one.

Haley: “I said that if you have to be 18 to get a tattoo, you should have to be 18 to have anything done to change your gender.”

During the debate, Haley likened her position on gender-affirming care for minors — that it should be up to parents until the child is 18 — to age requirements for getting a tattoo: “I said that if you have to be 18 to get a tattoo, you should have to be 18 to have anything done to change your gender.”

We’ve heard that comparison before. For what it’s worth, two-thirds of U.S. states allow minors to get tattoos if their parents consent. And medical experts have told us gender-affirming care is in many cases considered medically necessary, while tattoos are cosmetic.

Ramaswamy: “I think the North Star here is transgenderism is a mental health disorder.”

PolitiFact rated Ramaswamy’s claim False after he introduced it at the second primary debate.

In the past, the medical community viewed the experience of being transgender as a “disorder,” but they no longer agree on that categorization. In the past decade, diagnostic manuals published by the World Health Organization and the American Psychiatric Association contained updated language to clarify that being transgender is not a mental illness. Experts told us that persistent gender dysphoria can cause other mental health issues, but it is not itself a mental health disorder.

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Grassroots College Networks Distribute Emergency Contraceptives on Campus

Michelle Andrews — Wed, 06 Dec 2023 10:00:00 +0000

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But increasing access is more challenging elsewhere.

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

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

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

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

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

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

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

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

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

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

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

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Patients Expected Profemur Artificial Hips to Last. Then They Snapped in Half.

Brett Kelman and Anna Werner, CBS News — Tue, 05 Dec 2023 12:30:00 +0000

Bradley Little, a physical education teacher in Arizona, was leading his class through a school hallway in 2017 when he collapsed. Little feared he was having a stroke. Or, in a sign of the times, that he’d been shot. He tried to stand, but his leg wouldn’t move.

A student ran for help. Firefighters arrived and hoisted Little onto a gurney. At the hospital, an X-ray revealed that the artificial hip implant in Little’s right leg had “suddenly and catastrophically structurally failed,” according to a lawsuit Little would later file in federal court. The implant severed at its “neck” — a 2-inch-long titanium part linking Little’s thigh to his torso.

“It looked like a laser went through it,” Little said in an interview. “It was like someone just went in there and cut it right in the middle.”

Profemur artificial hips were once considered innovative for a feature known as a “dual modular neck,” intended to modernize total hip replacement surgery. Hundreds of thousands of Americans undergo hip implant surgery each year and devices are expected to last at least 20 years, according to the American College of Rheumatology. The Profemur necks, available in an array of lengths and angles, made it easier to customize the hip implants for patients.

But the neck also proved to be a weak point. Over the past two decades, more than 750 Profemur hips like Little’s have fractured at the neck, an attorney for the manufacturer once said in court while defending the device as not defective. In interviews, patients said they were left unable to walk and in need of emergency surgery. Reports submitted to the FDA describe Profemur patients stranded in the midst of routine life, while hiking, golfing, bowling, mowing the lawn, lifting a potted plant, getting out of a chair, putting on pants, and leaning over to pick up a key.

After each break, patients endure an hours-long repair surgery that can be traumatic because the broken implant is embedded in their bone and difficult to remove, according to three orthopedic surgeons who’ve performed such a procedure. The repair surgery, which can cost tens of thousands of dollars and may not be fully reimbursed by insurance, often requires a patient’s femur to be cracked open to extract a metal stem that was inserted down its length. Lawsuits have likened removing the bone around the stem to peeling a banana.

“It’s gruesome,” said Lee E. Rubin, an orthopedic surgeon and expert on prosthetic hips at Yale School of Medicine. “There’s no way around the fact that there’s a failed or broken implant in that patient’s thigh. We have to remove it.”

Many Profemur fractures in patients’ bodies could have been avoided if the manufacturer or the FDA responded to early signs of failure with more urgency, according to a months-long investigation by KFF Health News and CBS News. An FDA database shows reports of Profemur’s titanium modular necks breaking inside U.S. patients since at least 2005, but the corresponding parts were not recalled until 15 years later, if at all. Ten sizes of the titanium neck eventually were recalled in 2020 after being identified in more than 650 reports of fractures submitted to the FDA. Six other sizes of titanium necks, identified in about 75 additional fracture reports, have not been permanently recalled.

Aidin Eslam Pour, another Yale orthopedic surgeon who has studied Profemur fractures, said the manufacturer “waited too long.”

“This implant should have been pulled out of the market earlier,” he said.

Profemur’s original manufacturer, Wright Medical Technology, in 2009 switched the metal of the modular neck from titanium to a stronger cobalt-chromium alloy, FDA documents show. Then, after some of those necks also began to break, the company recalled one size but left 11 others on the market despite reports of corrosion causing the implants to fail, FDA documents show.

In total, at least 28 sizes of the Profemur artificial hips with a dual modular neck have allegedly fractured or corroded, but just 11 sizes have been permanently recalled, according to FDA data and records.

Wright Medical, a Tennessee company founded in 1950, has made implantable medical devices since at least the 1970s, according to the company website. Wright sold its hip and knee implant division, including the Profemur, to Chinese company MicroPort for $285 million in 2013, according to the Securities and Exchange Commission. Stryker Corp., one of the nation’s largest device companies, paid about $4 billion for the rest of Wright in 2020.

Wright Medical declined to comment in an email from Stryker spokesperson Jon Zimmer. MicroPort did not respond to more than a dozen requests for comment sent to its attorneys, public relations firm, and U.S. offices. MicroPort still advertises Profemur hip implants with dual modular necks on its website, where the devices are listed as “not marketed/registered in United States.”

The FDA declined to provide an official for an interview and did not answer written questions about why some Profemur sizes were not permanently recalled. In an email, FDA spokesperson Audra Harrison said medical device manufacturers are largely responsible for deciding which products to recall and when to do so, while the agency “monitors” this process and requests recalls only in “urgent situations.” In the case of the Profemur modular necks, all recalls were initiated by MicroPort, and the FDA “took action accordingly,” the agency said.

For this investigation, journalists with KFF Health News and CBS News analyzed thousands of reports of Profemur complications submitted over the past two decades to the FDA’s nationwide MAUDE database, which catalogs reports of medical device problems and malfunctions. MAUDE is unverified, incomplete, and imperfect — for example, not all device problems are properly submitted to the database, and a single issue may be reported more than once. However, the database still offers the best available perspective on medical device complications in the United States. The FDA has used MAUDE to identify device problems since the early ’90s.

KFF Health News and CBS News also reviewed about 180 lawsuits filed in federal court in the past decade alleging Profemur modular necks broke or corroded. Plaintiffs have alleged severe pain, swelling, a “debilitating lack of mobility,” and, in at least a few cases, nerve damage and neurological issues from cobalt and chromium ions leaking into their bloodstream.

Most of the lawsuits have been resolved through out-of-court settlements without Wright Medical or MicroPort publicly admitting fault, according to court filings. The remainder of the lawsuits are ongoing.

Wright Medical has denied liability in some lawsuits before settling them and has defended Profemur implants in court in the years before some of the implants were recalled for fracturing.

“A device fracture does not mean it is defective,” Wright Medical attorney Tiffany Carpenter said in federal court in 2018, according to a hearing transcript. “Devices fracture all the time.”

Collectively, the lawsuits allege that Profemur artificial hips broke or corroded at the neck in about 7½ years, on average. Profemur necks made from titanium broke on average in about 10 years while necks made from the cobalt-chromium alloy broke or corroded in just six years, the lawsuits allege.

Some plaintiffs say they got Profemur implants in both legs — then they both ended up breaking.

Mark Feld, 75, of New Hampshire, who was an avid runner, said he was implanted with Profemur artificial hips in his right and left legs in 2005 and 2008, then the right hip fractured within 10 years, according to a lawsuit he filed. Wright Medical denied liability in court filings and settled out of court for an undisclosed amount.

Feld said that because he surrendered all claims against Wright in the settlement, he could not sue again when his left implant broke in 2020 as he was walking across a bridge near his apartment.

He crawled home to call 911, he said, and was rushed to the hospital.

“I couldn’t walk across that bridge for a year,” Feld said. He now has new hip implants made by another company, but his fear lingers. “To this day, I still feel like a ticking time bomb. … Nobody could confirm for me that it can’t happen again.”

Little, the Arizona teacher, also suffered a second Profemur break, four years after his first, according to his lawsuit, in which Wright Medical denied liability and settled out of court. Little said in an interview that this time he was teaching class on a tennis court when he felt a sensation in his left leg that reminded him of crushing an aluminum can. He said he narrowly avoided tumbling onto his students.

After his two broken hip implants and replacement surgeries, Little said, he had to stop coaching basketball and will retire from teaching at the end of this school year — four years earlier than planned. He still feels unsteady and is afraid to climb a stepladder to change a lightbulb, he said.

“I’ve been robbed of some things,” Little said. “There should be accountability for it.”

It is not publicly known how many Profemur hips have failed. According to a federal court transcript, Carpenter, the attorney for Wright Medical, said in court in 2018 that the company was aware of 768 fractures among about 353,000 Profemur necks sold. That’s a fracture rate of about 0.2%.

Other sources report a much higher rate. The Profemur devices that were permanently recalled in 2020 had a U.S. fracture rate of 2.2% — 11 times what was described in court — according to FDA documents. Peer-reviewed studies estimate fracture rates as low as 1% and as high as 6% for some Profemur models.

Even the lowest estimates are “unacceptable,” said Samo Fokter, an orthopedic surgeon and Profemur expert at University Medical Center Maribor in Slovenia.

Fokter has co-authored more than 10 peer-reviewed studies on the Profemur, including one this year, and said he implanted about 50 of them before they were known to fracture.

“This should not happen,” Fokter said. “If you put too much force on any implant, it can fracture, of course, but this is very, very rare. Not approaching 1%. It should be less than one in 100,000, let’s say.”

‘Like a Black Hole Developed Under Their Foot’

The Profemur’s problems originate from its “neck,” which is a metal connector between the upper components in the hip socket to a lower “stem” that is inserted into a patient’s thigh bone, according to peer-reviewed studies, court records, and expert interviews.

Historically, an artificial hip’s stem and neck were a single piece of metal. The Profemur line added a junction at the top of the stem so the neck was separate. Because these dual modular necks detached on both ends, the size and angle could be changed to better fit a patient.

But the Profemur’s additional junction was also its downfall. Rubin, one of the Yale experts, who also maintains an exhibit of the history of prosthetic hips at the university, said in some patients tiny cracks formed on the portion of the neck that slotted into the socket of the stem. Patients had no idea their implant was cracking until the neck snapped, he said.

“From a patient’s perspective, they’re walking around on what otherwise would seem like a successful hip implant,” Rubin said. “And all of a sudden, as they took a step, they could not bear weight … like a black hole had developed under their foot.”

The dual modular neck was developed by a European company, Cremascoli Ortho Group, in the ’80s, then purchased by Wright Medical in 1999 to be introduced as the Profemur in the United States. The Profemur was cleared for sale by the FDA in 2000 through the 510(k) program, which permits new medical devices to be sold without extensive testing if they are deemed to have “substantial equivalence” to other devices already on the market. Through this process, new medical devices can piggyback on a single approval for decades.

Wright Medical told the FDA that the Profemur was substantially equivalent to five existing artificial hip systems, and the agency agreed, according to FDA documents obtained through a Freedom of Information Act request. However, of those five hip systems, at least three had significantly different necks than the Profemur, Rubin said. And one was later recalled because of its high failure rate, according to the FDA.

The FDA documents state that although the Profemur is different from the older hip implants that its approval was based on, those differences were “not expected to affect the device’s safety and effectiveness.” Spokesperson Harrison said in an email that the FDA “followed the statutory framework” when the Profemur was reviewed and cleared.

Once it was cleared by the FDA, Wright touted the Profemur’s dual modular neck as a feature.

In a 2004 promotional document obtained by KFF Health News and CBS News, Wright guaranteed the “structural reliability” and “absence of fretting corrosion” at the junction of the stem and neck. Then Wright marketed the Profemur to people with an “active lifestyle,” saying the product was for patients who wanted to return to activities like golf, tennis, karate, and wrestling after their hip replacements, according to at least two dozen lawsuits filed against the company.

Wright also hired Jimmy Connors, who was the world’s top-ranked tennis player in the ‘70s, as a spokesperson.

“This hip has given me back my quality of life. It’s allowed me to do anything I did before,” Connors said on JimmysNEWHip.com, a website launched by Wright in 2006, according to screen captures of the site preserved by the Internet Archive.

When the website launched, Wright Medical knew of at least some reports of modular neck fractures. Multiple lawsuits allege the company was aware as of 2000 that some Cremascoli hips had fractured at the modular neck, and then became aware of more fractures in 2003 and 2004. The FDA database shows Wright was also aware of two Profemur implants that allegedly fractured at the neck and were returned to Wright in spring 2005.

In 2006, FDA data showed six reports of Profemur fractures that identified the neck as the part that allegedly broke. By 2007, there were 11 such reports. By 2008, there were 30.

Connors, reached on his cellphone, said Wright Medical did not inform him of Profemur fractures at the time of his endorsement or since. Connors said his own hip implant did not fracture but had to be replaced in 2012 because of other complications.

If he had been told about a fracture risk, Connors said, he might have chosen another implant.

“If I was going through it now, I’d know a lot more to ask than I did back in the first time,” Connors said.

Perry Parks, 79, who played football for the Los Angeles Rams in the ’60s, said Connors’ endorsement persuaded him to get a Profemur hip in 2007. His implant snapped six years later during a bike ride, according to his lawsuit. Wright Medical denied liability and settled out of court.

In an interview, Parks said he was lucky to be biking at the beach at the time of the break, where he tumbled into sand, instead of in traffic.

“The thing that incenses me more is that they knew this,” Parks said. “There was some intentionality here to put … profits over the health of people.”

New Metal, New Complications

In 2009, Wright Medical introduced a new version of the Profemur modular neck that once again was cleared for sale by the FDA. Agency documents show that the neck material was switched from titanium to a cobalt-chromium alloy, a stronger metal.

“That was a big mistake,” Fokter said.

While the cobalt-chromium necks were less susceptible to fracture, they created a new problem at the same junction between the neck and stem, said Fokter and the two Yale experts. Once implanted, the cobalt-chromium neck could rub against the stem’s titanium socket, leading to a form of bimetallic corrosion that can cause pain and swelling and leak small amounts of metal ions into a patient’s bloodstream, potentially causing a long list of complications, the three experts said.

Robert Rembisz, 75, a retiree in Vero Beach, Florida, alleged in an ongoing lawsuit that Profemur corrosion in his right leg caused elevated metal levels in his blood and “neurologic symptoms” including nerve damage, tinnitus, and balance and coordination problems. Wright Medical has not yet responded to the allegations in Rembisz’s lawsuit.

Rembisz added in an interview that he believes the implant hindered his memory and cognition, leading him to question whether he was suffering early signs of dementia. He provided to KFF Health News and CBS News lab reports showing the metals in his blood rising over years, with cobalt levels peaking at nearly 12 times the normal range. Rembisz said most of the symptoms faded after his implant was removed in 2021.

“The problems I developed weren’t even close to my hip,” Rembisz said. “This problem could be occurring in [other people’s] bodies as well. And they don’t even know it.”

Six years after Profemur switched metals, MicroPort recalled one size of the cobalt-chromium neck affecting about 10,500 implants, citing an “unexpected rate of postoperative fractures,” according to FDA records. But it is unknown how many could not be returned because they’d already been implanted.

Kristin Biorn had one.

Biorn, 74, of Pasadena, California, alleged in a lawsuit that this particular size of Profemur neck was implanted in her left leg in 2013 and broke within two years — four months before the recall. Wright Medical and MicroPort denied liability in her lawsuit, then settled out of court.

In an interview, Biorn said the break occurred as she was working at her burgeoning home-staging business. While putting final touches on a client’s home with her teenage son, she fell to the floor, unable to stand or crawl, she said.

“Honestly, it gives me nightmares about what could have happened had my son not been there,” Biorn said. “My phone was downstairs and there was no way I could have gotten down the stairs alone. No one was scheduled to come in for four days.”

Biorn said in her interview that it took three surgeries to fix her hip after the Profemur fracture and she was ultimately forced to close her business and retire.

She now walks with a cane.

Although MicroPort recalled one cobalt-chromium size in 2015, the company did not recall 11 other sizes made of the same metal with the same design, and some lawsuits have faulted the company for leaving “interchangeable” products on the market. MicroPort also did not at that time recall any of the titanium necks, which as of 2015 were identified in more than 500 fracture reports in FDA’s database. MicroPort recalled 10 titanium sizes in 2020.

Finally, also in 2020, MicroPort issued a sweeping recall for all available Profemur modular necks, regardless of whether they were made of titanium or cobalt-chromium, according to FDA records.

The recall was temporary so MicroPort could update the documents included in the packaging of Profemur implants. The revised documents added a “general precaution” that doctors should consider a patient’s activity level and weight before implanting them with a Profemur, and said that patients should not have “unrealistic” expectations that include “substantial walking, running, lifting, or muscle strain.”

Afterward, the recall was lifted, and the FDA once again allowed the implants to be put up for sale.

KFF Health News data editor Holly K. Hacker and CBS News producer Nicole Keller contributed to this report.

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Desperate Families Search for Affordable Home Care

Reed Abelson, The New York Times — Mon, 04 Dec 2023 10:00:00 +0000

It’s a good day when Frank Lee, a retired chef, can slip out to the hardware store, fairly confident that his wife, Robin, is in the hands of reliable help. He spends nearly every hour of every day anxiously overseeing her care at their home on the Isle of Palms, a barrier island near Charleston, South Carolina.

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Finding an aide to help an older person stay at home safely takes work. Here’s a guide.

Robin Lee, 67, has had dementia for about a decade, but the couple was able to take overseas trips and enjoy their marriage of some 40 years until three years ago, when she grew more agitated, prone to sudden outbursts, and could no longer explain what she needed or wanted. He struggled to care for her largely on his own.

“As Mom’s condition got more difficult to navigate, he was just handling it,” said Jesse Lee, the youngest of the couple’s three adult children. “It was getting harder and harder. Something had to change, or they would both perish.”

Frank Lee’s search for trustworthy home health aides — an experience that millions of American families face — has often been exhausting and infuriating, but he has persisted. He didn’t entirely trust the care his wife would get in an assisted living facility. Last August, when a respite program paid for her brief stay in one so Frank, 69, could take a trip to the mountains, she fell and fractured her sacrum, the bone that connects the spine to the pelvis.

There is precious little assistance from the government for families who need a home health aide, unless they are poor. The people working in these jobs are often woefully underpaid and unprepared to help a frail, older person with dementia bathe and use the bathroom, or to defuse an angry outburst.

Usually, it is family that steps into the breach — grown children who cobble together a fragile chain of visitors to help an ailing father; a middle-aged daughter who returns to her childhood bedroom; a son-in-law working from home who keeps a watchful eye on a confused parent; a wife who can barely manage herself looking after a faltering husband.

Frank Lee finally found two aides on his own, with no help from an agency. Using the proceeds from the sale of his stake in a group of restaurants, including the popular Charleston bistro Slightly North of Broad, he pays them the going rate of about $30 an hour. Between his wife’s care and medical expenses, he estimates he’s spending between $80,000 and $100,000 a year.

“Who the hell can afford this?” he asked. “There’s no relief for families unless they have great wealth or see their wealth sucked away.” He worries that he will run out of money and be forced to sell their home of more than three decades. “Funds aren’t unlimited,” he said.

Credited with emphasizing local ingredients and mentoring young chefs in Charleston, Lee retired in 2016, a few years after his wife’s diagnosis.

In an interview at the time, he said, “My wife has given up her life to help me in my career, and now I need to pay attention to her.”

In 2020, he contacted a half-dozen home care agencies. Some couldn’t fill the position. Others sent aides who were quickly overwhelmed by his wife’s behavior. Doctors told the family they believed she has frontotemporal dementia, which appeared to affect her language and how she behaved.

One woman seemed promising, only to quit after a week or two. “We never saw her again,” Lee said. He tried a friend of the family for a time, but she left when her grandmother developed liver cancer.

“It was the whole year of going through different caregivers,” said son Jesse.

Finally, Frank found two women to help. One of them, Ronnie Smalls, has more than a dozen years of experience and is trained in dementia care. She has developed a rapport with Robin, who seems reassured by a quick touch. “We have a really good bond,” Smalls said. “I know her language, her expression.”

One day at the Lees’ cozy one-story house, decorated with furniture made by Robin, and with a yard overflowing with greenery, Smalls fed her lunch at the kitchen table with her husband and daughter. Robin seemed to enjoy the company, murmuring in response to the conversation.

At other times, she seemed oblivious to the people around her. She can no longer walk on her own. Two people are often needed to help her get up from a chair or go to the bathroom, transitions she often finds upsetting. A day without an aide — out because of illness or a family emergency — frays the tenuous links that hold the couple’s life together.

Lee said his wife barely resembles the woman he married, the one who loved hiking, skiing, and gardening, and who started a neighborhood preschool while raising their three children. A voracious reader, she is now largely silent, staring into space.

The prognosis is bleak, with doctors offering little to hang onto. “What’s the end game look like?” Lee asks, wondering if it would be better if his wife had the right to die rather than slowly disappear before his eyes. “As she disintegrates, I disintegrate,” he said. She recently qualified for hospice care, which will involve weekly visits from a nurse and a certified nursing assistant paid under Medicare.

Charleston is flush with retirees attracted by its low taxes and a warm climate, and it boasts of ways to care for them with large for-profit home health chains and a scattering of small agencies. But many families in Charleston and across the nation can’t find the help they need. And when they do, it’s often spotty and far more expensive than they can afford.

Most Americans want to remain in their own homes, living independently, for as long as possible. They want to avoid nursing homes, which they see as providing poor care, polls have found. And the ranks of older people who need such help will grow. By 2030, 1 in 5 Americans will be at least 65 as millions in the baby boomer generation retire.

In dozens of interviews, families described a desperate and sometimes fruitless search for aides to help loved ones with simple tasks on a predictable schedule at an hourly rate they can afford.

Roughly 8 million people 65 and older had dementia or needed help with two or more activities of basic daily life, like getting out of bed, according to an analysis of a federally funded survey of older Americans by KFF Health News and The New York Times. Only a million received paid help outside of a nursing home, and nearly 3 million had no help at all.

Most families can’t afford what agencies charge — about $27 an hour, according to Genworth, a long-term care insurance company. So, many take their chances on untrained caregivers found through word-of-mouth, Craigslist, or other resources.

A Scarcity of Workers

One of the main obstacles to finding paid help is the chronic shortage of workers. Some 3.7 million people had jobs as aides in home health or personal care in 2022, with half of them earning less than $30,000 year, or $14.51 an hour, according to the Bureau of Labor Statistics. The number of people needed is expected to increase by more than 20% over the next decade. But the working conditions are hard, the pay is usually bad, and the hours are inconsistent.

About 3 million people are working in private homes, according to a 2023 analysis by PHI, a nonprofit that studies and acts as an advocate for the workforce, although official estimates may not count many workers paid off the books or hired outside of an agency by a family. Eighty-five percent of home care workers are women, two-thirds are people of color, and roughly a third are immigrants. The pay is often so low that more than half qualify for public assistance like food stamps or Medicaid.

Dawn Geisler, 53, has made only $10 an hour working as a home health aide in the Charleston area for the past four years, without ever getting a raise. She declined to name the agency that employs her because she doesn’t want to lose her job.

Geisler discovered she liked the work after caring for her mother. Unlike an office job, “every day is just a little bit different,” she said. She now juggles two clients. She might accompany one to the doctor and keep the other one company. “I’m taking care of them like they were my own family,” she said.

The agency provides no guarantee of work and doesn’t always tell her what to expect when she walks through the door, except to say someone has Alzheimer’s or is in a wheelchair. Her supervisors often fail to let her know if her client goes to the hospital, so families know to call her cellphone. She has waited weeks for a new assignment without getting paid a penny. She herself has no health insurance and sometimes relies on food banks to put meals on the table.

“I’m not making enough to pay all the bills I have,” said Geisler, who joined an advocacy group called the Fight for $15, which is pushing to raise the minimum wage in South Carolina and across the country. When her car broke down, she couldn’t afford to get it fixed. Instead, she walked to work or borrowed her fiancé’s bicycle.

Most home care agencies nationwide are for-profit and are often criticized for ignoring the needs of workers in favor of the bottom line.

“The business models are based on cheap labor,” said Robyn Stone, the senior vice president of research for LeadingAge, which represents nonprofit agencies. The industry has historically tolerated high turnover but now can’t attract enough workers in a strong, competitive job market. “I think there has been a rude awakening for a lot of these companies,” she said.

Many agencies have also refused to pay overtime or travel costs between jobs, and many have been accused of wage theft in lawsuits filed by home care workers or have been sanctioned by state and federal agencies.

Medicaid, the federal-state program that provides health care for the poor, is supposed to provide home aides but faces shortages of workers at the rates it pays workers. At least 20 states pay less than $20 an hour for a personal care aide, according to a recent state survey by KFF. Aides are often paid less under Medicaid than if they care for someone paying privately.

With low pay and few benefits, many people would rather work the checkout line in a supermarket or at a fast-food chain than take on the emotionally demanding job of caring for an older person, said Ashlee Pittmann, the chief executive of Interim HealthCare of Charleston, a home health agency. She said that she recently raised wages by $2 an hour and had had more success keeping employees, but that she still worried that “we may not be able to compete with some larger companies.”

The Biden administration failed to obtain an additional $400 billion from Congress for home- and community-based services to shift emphasis away from institutional care. President Joe Biden signed an executive order this year to encourage some reforms, and federal officials have proposed requiring home health agencies to spend 80 cents of every government dollar on paying workers under Medicaid. But so far, little has changed.

Falling Through the ‘Doughnut Hole‘

Long-term care coverage for most Americans is a yawning gap in government programs. And the chasm is widening as more Americans age into their 70s, 80s, and 90s.

The government’s main program for people 65 and older is Medicare, but it pays for a home aide only when a medical condition, like recovery from a stroke, has made a person eligible for a nurse or therapist to come to the home. And the aide is usually short-term. Medicare doesn’t cover long-term care.

Medicaid, which does pay for long-term care at home, is limited to serving the poor or those who can demonstrate they have hardly any assets. But, again, the worker shortage is so pervasive that waiting lists for aides are years long, leaving many people without any option except a nursing home.

So millions of Americans keep trying to hang in and stay home as long as they can. They’re not poor enough to qualify for Medicaid, but they can’t afford to hire someone privately.

Many fall through what April Abel, a former home health nurse from Roper St. Francis Healthcare in Charleston, described as “the doughnut hole.”

“I feel so bad for them because they don’t have the support system they need,” she said.

She tried fruitlessly for months to find help for Joanne Ganaway, 79 and in poor health, from charities or state programs while she visited her at home. Ganaway had trouble seeing because of a tear in her retina and was often confused about her medications, but the small pension she had earned after working nearly 20 years as a state employee made her ineligible for Medicaid-sponsored home care.

So Ganaway, who rarely leaves her house, relies on friends or family to get to the doctor or the store. She spends most of her day in a chair in the living room. “It has been difficult for me, to be honest,” she said.

Turning to Respite Services

With no hope of steady help, there is little left to offer overstretched wives, husbands, sons, and daughters other than a brief respite. The Biden administration has embraced the idea of respite services under Medicare, including a pilot program for the families of dementia patients that will begin in 2024.

One nonprofit, Respite Care Charleston, provides weekday drop-off sessions for people with dementia for almost four hours a day.

Lee’s wife went for a couple of years, and he still makes use of the center’s support groups, where caregivers talk about the strain of watching over a loved one’s decline.

On any given morning, nearly a dozen people with dementia gather around a table. Two staff members and a few volunteers work with the group as they play word games, banter, bat balls around, or send a small plastic jumping frog across the table.

Their visits cost $50 a session, including lunch, and the organization’s brief hours keep it under the minimum state requirements for licensing.

“We’re not going to turn someone away,” Sara Perry, the group’s executive director, said. “We have some folks who pay nothing.”

The service is a godsend, families say. Parkinson’s disease and a stroke have left Dottie Fulmer’s boyfriend, Martyn Howse, mentally and physically incapacitated, but he enjoys the sessions.

“Respite Care Charleston has been a real key to his keeping going,” she said, “to both of us, quite frankly, continuing to survive.”

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Explosive DeSantis-Newsom Debate Reflects Nation’s Culture Wars

Angela Hart and PolitiFact Staff — Fri, 01 Dec 2023 14:15:00 +0000

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

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

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

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

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

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

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

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

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

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

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

Here are the health-related claims PolitiFact examined:

Covid-19 Lockdowns

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

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

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

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

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

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

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

Florida’s Abortion Limits and DeSantis’ Abortion Survivor Story

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

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

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

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

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

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

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

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

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

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

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

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

Hannah Norman, KFF Health News — Fri, 01 Dec 2023 10:00:00 +0000

Bill Eisenman has always fished.

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

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

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

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

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

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

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

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

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

‘Fishing Is a Way of Life’

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

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

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

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

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

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

Sparse Testing Leaves Blind Spots

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tackling Pollution at the Source

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

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

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

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

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

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

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

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

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

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