by Arthur Allen and Eliza Fawcett, Healthbeat Rebecca Grapevine, Healthbeat
Because viruses evolve as they infect people, the CDC has recommended updated covid vaccines each year.
The FDA has approved an updated covid shot for everyone 6 months old and up, which renews a now-annual quandary for Americans: Get the shot now, with the latest covid outbreak sweeping the country, or hold it in reserve for the winter wave?
The new vaccine should provide some protection to everyone. But many healthy people who have already been vaccinated or have immunity because they’ve been exposed to covid enough times may want to wait a few months.
Covid has become commonplace. For some, it’s a minor illness with few symptoms. Others are laid up with fever, cough, and fatigue for days or weeks. A much smaller group — mostly older or chronically ill people — suffer hospitalization or death.
It’s important for those in high-risk groups to get vaccinated, but vaccine protection wanes after a few months. Those who run to get the new vaccine may be more likely to fall ill this winter when the next wave hits, said William Schaffner, an infectious disease professor at Vanderbilt University School of Medicine and a spokesperson for the National Foundation for Infectious Diseases.
On the other hand, by late fall the major variants may have changed, rendering the vaccine less effective, said Peter Marks, the FDA’s top vaccine official, at a briefing Aug. 23. He urged everyone eligible to get immunized, noting that the risk of long covid is greater in the un- and undervaccinated.
Of course, if last year’s covid vaccine rollout is any guide, few Americans will heed his advice, even though this summer’s surge has been unusually intense, with levels of the covid virus in wastewater suggesting infections are as widespread as they were in the winter.
The Centers for Disease Control and Prevention now looks to wastewater as fewer people are reporting test results to health authorities. The wastewater data shows the epidemic is worst in Western and Southern states. In New York, for example, levels are considered “high” — compared with “very high” in Georgia.
Hospitalizations and deaths due to covid have trended up, too. But unlike infections, these rates are nowhere near those seen in winter surges, or in summers past. More than 2,000 people died of covid in July — a high number but a small fraction of the at least 25,700 covid deaths in July 2020.
Partial immunity built up through vaccines and prior infections deserves credit for this relief. A new study suggests that current variants may be less virulent — in the study, one of the recent variants did not kill mice exposed to it, unlike most earlier covid variants.
Alexandra Koch/Pixabay
Public health officials note that even with more cases this summer, people seem to be managing their sickness at home. “We did see a little rise in the number of cases, but it didn’t have a significant impact in terms of hospitalizations and emergency room visits,” said Manisha Juthani, public health commissioner of Connecticut, at a news briefing Aug. 21.
Unlike influenza or traditional cold viruses, covid seems to thrive outside the cold months, when germy schoolkids, dry air, and indoor activities are thought to enable the spread of air- and saliva-borne viruses. No one is exactly sure why.
“Covid is still very transmissible, very new, and people congregate inside in air-conditioned rooms during the summer,” said John Moore, a virologist and professor at Cornell University’s Weill Cornell Medicine College.
Or “maybe covid is more tolerant of humidity or other environmental conditions in the summer,” said Caitlin Rivers, an epidemiologist at Johns Hopkins University.
Because viruses evolve as they infect people, the CDC has recommended updated covid vaccines each year. Last fall’s booster was designed to target the omicron variant circulating in 2023. This year, mRNA vaccines made by Moderna and Pfizer and the protein-based vaccine from Novavax — which has yet to be approved by the FDA — target a more recent omicron variant, JN.1.
The FDA determined that the mRNA vaccines strongly protected people from severe disease and death — and would do so even though earlier variants of JN.1 are now being overtaken by others.
Public interest in covid vaccines has waned, with only 1 in 5 adults getting vaccinated since last September, compared with about 80% who got the first dose. New Yorkers have been slightly above the national vaccination rate, while in Georgia only about 17% got the latest shot.
Vaccine uptake is lower in states where the majority voted for Donald Trump in 2020 and among those who have less money and education, less health care access, or less time off from work. These groups are also more likely to be hospitalized or die of the disease, according to a 2023 study in The Lancet.
While the newly formulated vaccines are better targeted at the circulating covid variants, uninsured and underinsured Americans may have to rush if they hope to get one for free. A CDC program that provided boosters to 1.5 million people over the last year ran out of money and is ending Aug. 31.
The agency drummed up $62 million in unspent funds to pay state and local health departments to provide the new shots to those not covered by insurance. But “that may not go very far” if the vaccine costs the agency around $86 a dose, as it did last year, said Kelly Moore, CEO of Immunize.org, which advocates for vaccination.
People who pay out-of-pocket at pharmacies face higher prices: CVS plans to sell the updated vaccine for $201.99, said Amy Thibault, a spokesperson for the company.
“Price can be a barrier, access can be a barrier” to vaccination, said David Scales, an assistant professor of medicine at Weill Cornell Medical College.
Without an access program that provides vaccines to uninsured adults, “we’ll see disparities in health outcomes and disproportionate outbreaks in the working poor, who can ill afford to take off work,” Kelly Moore said.
New York state has about $1 million to fill the gaps when the CDC’s program ends, said Danielle De Souza, a spokesperson for the New York State Department of Health. That will buy around 12,500 doses for uninsured and underinsured adults, she said. There are roughly one million uninsured people in the state.
CDC and FDA experts last year decided to promote annual fall vaccination against covid and influenza along with a one-time respiratory syncytial virus shot for some groups.
It would be impractical for the vaccine-makers to change the covid vaccine’s recipe twice every year, and offering the three vaccines during one or two health care visits appears to be the best way to increase uptake of all of them, said Schaffner, who consults for the CDC’s policy-setting Advisory Committee on Immunization Practices.
At its next meeting, in October, the committee is likely to urge vulnerable people to get a second dose of the same covid vaccine in the spring, for protection against the next summer wave, he said.
If you’re in a vulnerable population and waiting to get vaccinated until closer to the holiday season, Schaffner said, it makes sense to wear a mask and avoid big crowds, and to get a test if you think you have covid. If positive, people in these groups should seek medical attention since the antiviral pill Paxlovid might ameliorate their symptoms and keep them out of the hospital.
As for conscientious others who feel they may be sick and don’t want to spread the covid virus, the best advice is to get a single test and, if positive, try to isolate for a few days and then wear a mask for several days while avoiding crowded rooms. Repeat testing after a positive result is pointless, since viral particles in the nose may remain for days without signifying a risk of infecting others, Schaffner said.
The Health and Human Services Department is making four free covid tests available to anyone who requests them starting in late September through covidtest.gov, said Dawn O’Connell, assistant secretary for preparedness and response, at the Aug. 23 briefing.
The government is focusing its fall vaccine advocacy campaign, which it’s calling “Risk less, live more,” on older people and nursing home residents, said HHS spokesperson Jeff Nesbit.
Not everyone may really need a fall covid booster, but “it’s not wrong to give people options,” John Moore said. “The 20-year-old athlete is less at risk than the 70-year-old overweight dude. It’s as simple as that.”
KFF Health News correspondent Amy Maxmen contributed to this report.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
Subscribe to KFF Health News' free Morning Briefing.
Trump campaigned on a promise to repeal and replace the Affordable Care Act, or ACA. In the White House, Trump supported a failed effort to do just that. He repeatedly said he would dismantle the health care law in campaign stops and social media posts throughout 2023.
President Joe Biden and former President Donald Trump, the presumptive Democratic and Republican presidential nominees, shared a debate stage June 27 for the first time since 2020, in a confrontation that — because of strict debate rules — managed to avoid the near-constant interruptions that marred their previous encounters.
Biden, who spoke in a raspy voice and often struggled to articulate his arguments, said at one point that his administration “finally beat Medicare.” Trump, meanwhile, repeated numerous falsehoods, including that Democrats want doctors to be able to abort babies after birth.
Illustration: Richard Duijnstee/Pixabay
Trump took credit for the Supreme Court’s 2022 decision that upended Roe v. Wade and returned abortion policy to states. “This is what everybody wanted,” he said, adding “it’s been a great thing.” Biden’s response: “It’s been a terrible thing.”
In one notable moment, Trump said he would not repeal FDA approval for medication abortion, used last year in nearly two-thirds of U.S. abortions. Some conservatives have targeted the FDA’s more than 20-year-old approval of the drug mifepristone to further restrict access to abortion nationwide.
“The Supreme Court just approved the abortion pill. And I agree with their decision to have done that, and I will not block it,” Trump said. The Supreme Court ruled this month that an alliance of anti-abortion medical groups and doctors lacked standing to challenge the FDA’s approval of the drug. The court’s ruling, however, did not amount to an approval of the drug.
CNN hosted the debate, which had no audience, at its Atlanta headquarters. CNN anchors Jake Tapper and Dana Bash moderated. The debate format allowed CNN to mute candidates’ microphones when it wasn’t their turn to speak.
Our PolitiFact partners fact-checked the debate in real time as Biden and Trump clashed on the economy, immigration, and abortion, and revisited discussion of their ages. Biden, 81, has become the oldest sitting U.S. president; if Trump defeats him, he would end his second term at age 82. You can read the full coverage here and excerpts detailing specific health-related claims follow:
Biden: “We brought down the price [of] prescription drug[s], which is a major issue for many people, to $15 for an insulin shot, as opposed to $400.”
Half True. Biden touted his efforts to reduce prescription drug costs by referring to the $35 monthly insulin price cap his administration put in place as part of the 2022 Inflation Reduction Act. But he initially flubbed the number during the debate, saying it was lowered to $15. In his closing statement, Biden corrected the amount to $35.
The price of insulin for Medicare enrollees, starting in 2023, dropped to $35 a month, not $15. Drug pricing experts told PolitiFact when it rated a similar claim that most Medicare enrollees were likely not paying a monthly average of $400 before the changes, although because costs vary depending on coverage phases and dosages, some might have paid that much in a given month.
Trump: “I’m the one that got the insulin down for the seniors.”
Mostly False. When he was president, Trump instituted the Part D Senior Savings Model, a program that capped insulin costs at $35 a month for some older Americans in participating drug plans.
But because it was voluntary, only 38% of all Medicare drug plans, including Medicare Advantage plans, participated in 2022, according to KFF. Trump’s plan also covered only one form of each dosage and insulin type.
Biden points to the Inflation Reduction Act’s mandatory $35 monthly insulin cap as a major achievement. This cap applies to all Medicare prescription plans and expanded to all covered insulin types and dosages. Although Trump’s model was a start, it did not have the sweeping reach that Biden’s mandatory cap achieved.
Biden: Trump “wants to get rid of the ACA again.”
Half True. In 2016, Trump campaigned on a promise to repeal and replace the Affordable Care Act, or ACA. In the White House, Trump supported a failed effort to do just that. He repeatedly said he would dismantle the health care law in campaign stops and social media posts throughout 2023. In March, however, Trump walked back this stance, writing on his Truth Social platform that he “isn’t running to terminate” the ACA but to make it “better” and “less expensive.” Trump hasn’t said how he would do this. He has often promised Obamacare replacement plans without ever producing one.
Trump: “The problem [Democrats] have is they’re radical, because they will take the life of a child in the eighth month, the ninth month, and even after birth.”
False. Willfully terminating a newborn’s life is infanticide and illegal in every U.S. state.
Most elected Democrats who have spoken publicly about this have said they support abortion under Roe v. Wade’s standard, which allowed access up to fetal viability — typically around 24 weeks of pregnancy, when the fetus can survive outside the womb. Many Democrats have also said they support abortions past this point if the treating physician deems it necessary.
Medical experts say situations resulting in fetal death in the third trimester are rare — fewer than 1% of abortions in the U.S. occur after 21 weeks — and typically involve fatal fetal anomalies or life-threatening emergencies affecting the pregnant person. For fetuses with very short life expectancies, doctors may induce labor and offer palliative care. Some families choose this option when facing diagnoses that limit their babies’ survival to minutes or days after delivery.
Some Republicans who have made claims similar to Trump’s point to Democratic support of the Women’s Health Protection Act of 2022, which would have prohibited many state government restrictions on access to abortion, citing the bill’s provisions that say providers and patients have the right to perform and receive abortion services without certain limitations or requirements that would impede access. Anti-abortion advocates say the bill, which failed in the Senate by a 49-51 vote, would have created a loophole that eliminated any limits on abortions later in pregnancy.
Alina Salganicoff, director of KFF’s Women’s Health Policy program, said the legislation would have allowed health providers to perform abortions without obstacles such as waiting periods, medically unnecessary tests and in-person visits, or other restrictions. The bill would have allowed an abortion after viability when, according to the bill, “in the good-faith medical judgment of the treating health care provider, continuation of the pregnancy would pose a risk to the pregnant patient’s life or health.”
Trump: “Social Security, he’s destroying it, because millions of people are pouring into our country, and they’re putting them onto Social Security. They’re putting them onto Medicare, Medicaid.”
False. It’s wrong to say that immigration will destroy Social Security. Social Security’s fiscal challenges stem from a shortage of workers compared with beneficiaries.
Immigration is far from a fiscal fix-all for Social Security’s challenges. But having more immigrants in the United States would likely increase the worker-to-beneficiary ratio, potentially for decades, thus extending the program’s solvency.
Most immigrants in the U.S. without legal permission are also ineligible for Social Security. However, people who entered the U.S. without authorization and were granted humanitarian parole — temporary permission to stay in the country — for more than one year are eligible for benefits from the program.
Immigrants lacking legal residency in the U.S. are generally ineligibleto enroll in federally funded health care coverage such as Medicare and Medicaid. (Some states provide Medicaid coverage under state-funded programs regardless of immigration status. Immigrants are eligible for emergency Medicaid regardless of their legal status.)
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
Subscribe to KFF Health News' free Morning Briefing.
The financial and emotional toll of providing and paying for long-term care is wreaking havoc on the lives of millions of Americans.
by Reed Abelson, The New York Times Jordan Rau, KFF Health New
Kaiser Health News - Margaret Newcomb, 69, a retired French teacher, is desperately trying to protect her retirement savings by caring for her 82-year-old husband, who has severe dementia, at home in Seattle. She used to fear his disease-induced paranoia, but now he’s so frail and confused that he wanders away with no idea of how to find his way home. He gets lost so often that she attaches a tag to his shoelace with her phone number.
The financial and emotional toll of providing and paying for long-term care is wreaking havoc on the lives of millions of Americans. Read about how a few families are navigating the challenges, in their own words. (Read More)
Feylyn Lewis, 35, sacrificed a promising career as a research director in England to return home to Nashville after her mother had a debilitating stroke. They ran up $15,000 in medical and credit card debt while she took on the role of caretaker.
Sheila Littleton, 30, brought her grandfather with dementia to her family home in Houston, then spent months fruitlessly trying to place him in a nursing home with Medicaid coverage. She eventually abandoned him at a psychiatric hospital to force the system to act.
“That was terrible,” she said. “I had to do it.”
Millions of families are facing such daunting life choices — and potential financial ruin — as the escalating costs of in-home care, assisted living facilities, and nursing homes devour the savings and incomes of older Americans and their relatives.
“People are exposed to the possibility of depleting almost all their wealth,” said Richard Johnson, director of the program on retirement policy at the Urban Institute.
The prospect of dying broke looms as an imminent threat for the boomer generation, which vastly expanded the middle class and looked hopefully toward a comfortable retirement on the backbone of 401(k)s and pensions. Roughly 10,000 of them will turn 65 every day until 2030, expecting to live into their 80s and 90s as the price tag for long-term care explodes, outpacing inflation and reaching a half-trillion dollars a year, according to federal researchers.
By 2050, there will be more than 86 million Americans over the age of 65. The U.S. does not dedicate enough funds for long-term care of the aging population. For the most, the financial burden is left on the shoulders of the senior and their financial resources or that of the family.
Photo: Spolyakov/PEXELS
The challenges will only grow. By 2050, the population of Americans 65 and older is projected to increase by more than 50%, to 86 million, according to census estimates. The number of people 85 or older will nearly triple to 19 million.
The United States has no coherent system of long-term care, mostly a patchwork. The private market, where a minuscule portion of families buy long-term care insurance, has shriveled, reduced over years of giant rate hikes by insurers that had underestimated how much care people would actually use. Labor shortages have left families searching for workers willing to care for their elders in the home. And the cost of a spot in an assisted living facility has soared to an unaffordable level for most middle-class Americans. They have to run out of money to qualify for nursing home care paid for by the government.
For an examination of the crisis in long-term care, The New York Times and KFF Health News interviewed families across the nation as they struggled to obtain care; examined companies that provide it; and analyzed data from the federally funded Health and Retirement Study, the most authoritative national survey of older people about their long-term care needs and financial resources.
About 8 million people 65 and older reported that they had dementia or difficulty with basic daily tasks like bathing and feeding themselves — and nearly 3 million of them had no assistance at all, according to an analysis of the survey data. Most people relied on spouses, children, grandchildren, or friends.
The United States devotes a smaller share of its gross domestic product to long-term care than do most other wealthy countries, including Britain, France, Canada, Germany, Sweden, and Japan, according to the Organization for Economic Cooperation and Development. The United States lags its international peers in another way: It dedicates far less of its overall health spending toward long-term care.
“We just don’t value elders the way that other countries and other cultures do,” said Rachel Werner, executive director of the Leonard Davis Institute of Health Economics at the University of Pennsylvania. “We don’t have a financing and insurance system for long-term care,” she said. “There isn’t the political will to spend that much money.”
Most countries spend more than the United States on care, but middle-class and affluent people still bear a substantial portion of the costs. (Read More)
Despite medical advances that have added years to the average life span and allowed people to survive decades more after getting cancer or suffering from heart disease or strokes, federal long-term care for older people has not fundamentally changed in the decades since President Lyndon Johnson signed Medicare and Medicaid into law in 1965. From 1960 to 2021, the number of Americans age 85 and older increased at more than six times the rate of the general population, according to census records.
Medicare, the federal health insurance program for Americans 65 and older, covers the costs of medical care, but generally pays for a home aide or a stay in a nursing home only for a limited time during a recovery from a surgery or a fall or for short-term rehabilitation.
Medicaid, the federal-state program, covers long-term care, usually in a nursing home, but only for the poor. Middle-class people must exhaust their assets to qualify, forcing them to sell much of their property and to empty their bank accounts. If they go into a nursing home, they are permitted to keep a pittance of their retirement income: $50 or less a month in a majority of states. And spouses can hold onto only a modest amount of income and assets, often leaving their children and grandchildren to shoulder some of the financial burden.
At any given time, skilled nursing homes house roughly 630,000 older residents whose average age is about 77.
“You basically want people to destitute themselves and then you take everything else that they have,” said Gay Glenn, whose mother lived in a nursing home in Kansas until she died in October at age 96.
Her mother, Betty Mae Glenn, had to spend down her savings, paying the home more than $10,000 a month, until she qualified for Medicaid. Glenn, 61, relocated from Chicago to Topeka more than four years ago, moving into one of her mother’s two rental properties and overseeing her care and finances.
Under the state Medicaid program’s byzantine rules, she had to pay rent to her mother, and that income went toward her mother’s care. Glenn sold the family’s house just before her mother’s death in October. Her lawyer told her the estate had to pay Medicaid back about $20,000 from the proceeds.
A play she wrote about her relationship with her mother, titled “If You See Panic in My Eyes,” was read this year at a theater festival.
At any given time, skilled nursing homes house roughly 630,000 older residents whose average age is about 77, according to recent estimates. A long-term resident’s care can easily cost more than $100,000 a year without Medicaid coverage at these institutions, which are supposed to provide round-the-clock nursing coverage.
Nine in 10 people said it would be impossible or very difficult to pay that much, according to a KFF public opinion poll conducted during the pandemic.
Efforts to create a national long-term care system have repeatedly collapsed. Democrats have argued that the federal government needs to take a much stronger hand in subsidizing care. The Biden administration sought to improve wages and working conditions for paid caregivers. But a $150 billion proposal in the Build Back Better Act for in-home and community-based services under Medicaid was dropped to lower the price tag of the final legislation.
“This is an issue that’s coming to the front door of members of Congress,” said Sen. Bob Casey, a Pennsylvania Democrat and chair of the Senate Special Committee on Aging. “No matter where you’re representing — if you’re representing a blue state or red state — families are not going to settle for just having one option,” he said, referring to nursing homes funded under Medicaid. “The federal government has got to do its part, which it hasn’t.”
But leading Republicans in Congress say the federal government cannot be expected to step in more than it already does. Americans need to save for when they will inevitably need care, said Sen. Mike Braun of Indiana, the ranking Republican on the aging committee.
“So often people just think it’s just going to work out,” he said. “Too many people get to the point where they’re 65 and then say, ‘I don’t have that much there.’”
Private Companies’ Prices Have Skyrocketed
The boomer generation is jogging and cycling into retirement, equipped with hip and knee replacements that have slowed their aging. And they are loath to enter the institutional setting of a nursing home.
But they face major expenses for the in-between years: falling along a spectrum between good health and needing round-the-clock care in a nursing home.
That has led them to assisted living centers run by for-profit companies and private equity funds enjoying robust profits in this growing market. Some 850,000 people age 65 or older now live in these facilities that are largely ineligible for federal funds and run the gamut, with some providing only basics like help getting dressed and taking medication and others offering luxury amenities like day trips, gourmet meals, yoga, and spas.
The bills can be staggering.
As Americans live longer, the number who develop dementia, a condition of aging, has soared, as have their needs.
Half of the nation’s assisted living facilities cost at least $54,000 a year, according to Genworth, a long-term care insurer. That rises substantially in many metropolitan areas with lofty real estate prices. Specialized settings, like locked memory care units for those with dementia, can cost twice as much.
Home care is costly, too. Agencies charge about $27 an hour for a home health aide, according to Genworth. Hiring someone who spends six or seven hours a day cleaning and helping an older person get out of bed or take medications can add up to $60,000 a year.
As Americans live longer, the number who develop dementia, a condition of aging, has soared, as have their needs. Five million to 7 million Americans age 65 and up have dementia, and their ranks are projected to grow to nearly 12 million by 2040. The condition robs people of their memories, mars the ability to speak and understand, and can alter their personalities.
In Seattle, Margaret and Tim Newcomb sleep on separate floors of their two-story cottage, with Margaret ever mindful that her husband, who has dementia, can hallucinate and become aggressive if medication fails to tame his symptoms.
“The anger has diminished from the early days,” she said last year.
But earlier on, she had resorted to calling the police when he acted erratically.
“He was hating me and angry, and I didn’t feel safe,” she said.
She considered memory care units, but the least expensive option cost around $8,000 a month and some could reach nearly twice that amount. The couple’s monthly income, with his pension from Seattle City Light, the utility company, and their combined Social Security, is $6,000.
Placing her husband in such a place would have gutted the $500,000 they had saved before she retired from 35 years teaching art and French at a parochial school.
“I’ll let go of everything if I have to, but it’s a very unfair system,” she said. “If you didn’t see ahead or didn’t have the right type of job that provides for you, it’s tough luck.”
In the last year, medication has quelled Tim’s anger, but his health has declined so much that he no longer poses a physical threat. Margaret said she’s reconciled to caring for him as long as she can.
“When I see him sitting out on the porch and appreciating the sun coming on his face, it’s really sweet,” she said.
The financial threat posed by dementia also weighs heavily on adult children who have become guardians of aged parents and have watched their slow, expensive declines.
Claudia Morrell, 64, of Parkville, Maryland, estimated her mother, Regine Hayes, spent more than $1 million during the eight years she needed residential care for dementia. That was possible only because her mother had two pensions, one from her husband’s military service and another from his job at an insurance company, plus savings and Social Security.
Morrell paid legal fees required as her mother’s guardian, as well as $6,000 on a special bed so her mother wouldn’t fall out and on private aides after she suffered repeated small strokes. Her mother died last December at age 87.
“I will never have those kinds of resources,” Morrell, an education consultant, said. “My children will never have those kinds of resources. We didn’t inherit enough or aren’t going to earn enough to have the quality of care she got. You certainly can’t live that way on Social Security.”
Women Bear the Burden of Care
For seven years, Annie Reid abandoned her life in Colorado to sleep in her childhood bedroom in Maryland, living out of her suitcase and caring for her mother, Frances Sampogna, who had dementia. “No one else in my family was able to do this,” she said.
“It just dawned on me, I have to actually unpack and live here,” Reid, 61, remembered thinking. “And how long? There’s no timeline on it.”
After Sampogna died at the end of September 2022, her daughter returned to Colorado and started a furniture redesign business, a craft she taught herself in her mother’s basement. Reid recently had her knee replaced, something she could not do in Maryland because her insurance didn’t cover doctors there.
“It’s amazing how much time went by,” she said. “I’m so grateful to be back in my life again.”
Studies are now calculating the toll of caregiving on children, especially women. The median lost wages for women providing intensive care for their mothers is $24,500 over two years, according to a study led by Norma Coe, an associate professor at the Perelman School of Medicine at the University of Pennsylvania.
Lewis moved back from England to Nashville to care for her mother, a former nurse who had a stroke that put her in a wheelchair.
“I was thrust back into a caregiving role full time,” she said. She gave up a post as a research director for a nonprofit organization. She is also tending to her 87-year-old grandfather, ill with prostate cancer and kidney disease.
Making up for lost income seems daunting while she continues to support her mother.
But she is regaining hope: She was promoted to assistant dean for student affairs at Vanderbilt School of Nursing and was recently married. She and her husband plan to stay in the same apartment with her mother until they can save enough to move into a larger place.
Government Solutions Are Elusive
Over the years, lawmakers in Congress and government officials have sought to ease the financial burdens on individuals, but little has been achieved.
The CLASS Act, part of the Obamacare legislation of 2010, was supposed to give people the option of paying into a long-term insurance program. It was repealed two years later amid compelling evidence that it would never be economically viable.
Two years ago, another proposal, called the WISH Act, outlined a long-term care trust fund, but it never gained traction.
On the home care front, the scarcity of workers has led to a flurry of attempts to improve wages and working conditions for paid caregivers. A provision in the Build Back Better Act to provide more funding for home care under Medicaid was not included in the final Inflation Reduction Act, a less costly version of the original bill that Democrats sought to pass last year.
The labor shortages are largely attributed to low wages for difficult work. In the Medicaid program, demand has clearly outstripped supply, according to a recent analysis. While the number of home aides in the Medicaid program has increased to 1.4 million in 2019 from 840,000 in 2008, the number of aides per 100 people who qualify for home or community care has declined nearly 12%.
In April, President Joe Biden signed an executive order calling for changes to government programs that would improve conditions for workers and encourage initiatives that would relieve some of the burdens on families providing care.
Turning to Medicaid, a Shredded Safety Net
The only true safety net for many Americans is Medicaid, which represents, by far, the largest single source of funding for long-term care.
More than 4 in 5 middle-class people 65 or older who need long-term care for five years or more will eventually enroll, according to an analysis for the federal government by the Urban Institute. Almost half of upper-middle-class couples with lifetime earnings of more than $4.75 million will also end up on Medicaid.
But gaps in Medicaid coverage leave many people without care. Under federal law, the program is obliged to offer nursing home care in every state. In-home care, which is not guaranteed, is provided under state waivers, and the number of participants is limited. Many states have long waiting lists, and it can be extremely difficult to find aides willing to work at the low-paying Medicaid rate.
Qualifying for a slot in a nursing home paid by Medicaid can be formidable, with many families spending thousands of dollars on lawyers and consultants to navigate state rules. Homes may be sold or couples may contemplate divorce to become eligible.
And recipients and their spouses may still have to contribute significant sums. After Stan Markowitz, a former history professor in Baltimore with Parkinson’s disease, and his wife, Dottye Burt, 78, exhausted their savings on his two-year stay in an assisted living facility, he qualified for Medicaid and moved into a nursing home.
He was required to contribute $2,700 a month, which ate up 45% of the couple’s retirement income. Burt, who was a racial justice consultant for nonprofits, rented a modest apartment near the home, all she could afford on what was left of their income.
Markowitz died in September at age 86, easing the financial pressure on her. “I won’t be having to pay the nursing home,” she said.
Even finding a place willing to take someone can be a struggle. Harold Murray, Sheila Littleton’s grandfather, could no longer live safely in rural North Carolina because his worsening dementia led him to wander. She brought him to Houston in November 2020, then spent months trying to enroll him in the state’s Medicaid program so he could be in a locked unit at a nursing home.
She felt she was getting the runaround. Nursing home after nursing home told her there were no beds, or quibbled over when and how he would be eligible for a bed under Medicaid. In desperation, she left him at a psychiatric hospital so it would find him a spot.
“I had to refuse to take him back home,” she said. “They had no choice but to place him.”
He was finally approved for coverage in early 2022, at age 83.
A few months later, he died.
Reed Abelson is a health care reporter for The New York Times. The New York Times' Kirsten Noyes and graphics editor Albert Sun, KFF Health News data editor Holly K. Hacker, and JoNel Aleccia, formerly of KFF Health News, contributed to this report originally published .
US Health and Retirement Study Analysis
The New York Times-KFF Health News data analysis was based on the Health and Retirement Study, a nationally representative longitudinal survey of about 20,000 people age 50 and older. The analysis defined people age 65 and above as likely to need long-term care if they were assessed to have dementia, or if they reported having difficulty with two or more of six specified activities of daily living: bathing, dressing, eating, getting in and out of bed, walking across a room, and using the toilet. The Langa-Weir classification of cognitive function, a related data set, was used to identify respondents with dementia. The analysis’s definition of needing long-term care assistance is conservative and in line with the criteria most long-term care insurers use in determining whether they will pay for services.
People were described as recipients of long-term care help if they reported receiving assistance in the month before the interview for the study or if they lived in a nursing home. The analysis was developed in consultation with Norma Coe, an associate professor of medical ethics and health policy at the Perelman School of Medicine at the University of Pennsylvania.
The financial toll on middle-class and upper-income people needing long-term care was examined by reviewing data that the HRS collected from 2000 to 2021 on wealthy Americans, those whose net worth at age 65 was in the 50th to 95th percentile, totaling anywhere from $171,365 to $1,827,765 in inflation-adjusted 2020 dollars. This group excludes the super-wealthy. Each individual’s wealth at age 65 was compared with their wealth just before they died to calculate the percentage of affluent people who exhausted their financial resources and the likelihood that would occur among different groups.
To calculate how many people were likely to need long-term care, how many people needing long-term care services were receiving them, and who was providing care to people receiving help, we looked at people age 65 and older of all wealth levels in the 2020-21 survey, the most recent.
The U.S. Health and Retirement Study is conducted by the University of Michigan and funded by the National Institute on Aging and the Social Security Administration.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
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Juan Campos has been working to save at-risk teens from gun violence for 16 years.
As a street outreach worker in Oakland, California, he has seen the pull and power of gangs. And he offers teens support when they’ve emerged from the juvenile justice system, advocates for them in school, and, if needed, helps them find housing, mental health services, and treatment for substance abuse.
But, he said, he’s never confronted a force as formidable as social media, where small boasts and disputes online can escalate into deadly violence in schoolyards and on street corners.
Teens post photos or videos of themselves with guns and stacks of cash, sometimes calling out rivals, on Facebook, Instagram, Snapchat, or TikTok. When messages go viral, fueled by “likes” and comments, the danger is hard to contain, Campos said.
“It’s hundreds of people on social media, versus just one or two people trying to guide youth in a positive way,” he said. Sometimes his warnings are stark, telling kids, “I want to keep you alive.” But, he said, “it doesn’t work all the time.”
Shamari Martin Jr. was an outgoing 14-year-old and respectful to his teachers in Oakland. Mixed in with videos of smiling friends on his Instagram feed were images of Shamari casually waving a gun or with cash fanned across his face. In March 2022, he was shot when the car he was in took a hail of bullets. His body was left on the street, and emergency medical workers pronounced him dead at the scene.
More than a year later, Shamari’s death remains unsolved.
In Shamari’s neighborhood, kids join gangs when they’re as young as 9 or 10, sometimes carrying guns to elementary school, said Tonyia “Nina” Carter, a violence interrupter who knew Shamari and works with Youth Alive, which tries to prevent violence. Shamari “was somewhat affiliated with that culture” of gangs and guns, Carter said.
Shamari’s friends poured out their grief on Instagram with broken-heart emojis and comments such as “love you brother I’m heart hurt.”
One post was more ominous: “it’s blood inna water all we want is revenge.” Rivals posted videos of themselves kicking over flowers and candles at Shamari’s memorial.
Such online outpourings of grief often presage additional violence, said Desmond Patton, a University of Pennsylvania professor who studies social media and firearm violence.
More than a year later, Shamari’s death remains unsolved. But it’s still a volatile subject in Oakland, said Bernice Grisby, a counselor at the East Bay Asian Youth Center, who works with gang-involved youth.
“There’s still a lot of gang violence going on around his name,” she said. “It could be as simple as someone saying, ‘Forget him or F him’ — that can be a death sentence. Just being affiliated with his name in any sort can get you killed.”
The U.S. surgeon general last month issued a call to action about social media’s corrosive effects on child and adolescent mental health, warning of the “profound risk of harm” to young people, who can spend hours a day on their phones. The 25-page report highlighted the risks of cyberbullying and sexual exploitation. It failed to mention social media’s role in escalating gun violence.
Social media is an extremely powerful tool for metastasizing disrespect
Michel Moore, the Los Angeles police chief, called its impact “dramatic.”
“What used to be communicated on the street or in graffiti or tagging or rumors from one person to another, it’s now being distributed and amplified on social media,” he said. “It’s meant to embarrass and humiliate others.”
“Social media is an extremely powerful tool for metastasizing disrespect,” Punch said. And of all the causes of gun violence, social media-fueled grudges are “the most impenetrable.”
“When you allow a video that leads to a shooting, you bear responsibility for what you put out there,” said Fred Fogg, national director of violence prevention for Youth Advocate Programs, a group that provides alternatives to youth incarceration. “Social media is addictive, and intentionally so.”
People note that social media can have a particularly pernicious effect in communities with high rates of gun violence.
“Social media companies need to be better regulated in order to make sure they aren’t encouraging violence in Black communities,” said Jabari Evans, an assistant professor of race and media at the University of South Carolina. But he said social media companies also should help “dismantle the structural racism” that places many Black youth “in circumstances that resign them to want to join gangs, carry guns to school, or take on violent personas for attention.”
L.A.’s Moore described social media companies as serving “in a reactionary role. They are profit-driven. They don’t want to have any type of control or restrictions that would suppress advertising.”
Social media companies say they remove content that violates their policies against threatening others or encouraging violence as quickly as possible. In a statement, YouTube spokesperson Jack Malon said the company “prohibits content reveling in or mocking the death or serious injury of an identifiable individual.”
As a company, we have every commercial and moral incentive to try to give the maximum number of people as much of a positive experience as possible on Facebook.
Rachel Hamrick, a spokesperson for Meta, which owns Facebook and Instagram, said the company has spent about $16 billion in the past seven years to protect the safety of people who post on its apps, employing 40,000 people at Facebook who work on safety and security.
“We remove content, disable accounts and work with law enforcement when we believe there is a genuine risk of physical harm or direct threats to public safety,” Hamrick said. “As a company, we have every commercial and moral incentive to try to give the maximum number of people as much of a positive experience as possible on Facebook. That’s why we take steps to keep people safe even if it impacts our bottom line.”
Meta platforms generated revenue of over $116 billion in 2022, most of which came from advertising.
A spokesperson for Snapchat, Pete Boogaard, said the company deletes violent content within minutes of being notified of it. But, Fogg noted, by the time a video is removed, hundreds of people may have seen it.
Even critics acknowledge that the sheer volume of content on social media is difficult to control. Facebook has nearly 3 billion monthly users worldwide; YouTube has nearly 2.7 billion users; Instagram has 2 billion. If a company shuts down one account, a person can simply open a new one, said Tara Dabney, a director at the Institute for Nonviolence Chicago.
“Things could be going great in a community,” Fogg said, “and then the next thing you know, something happens on social media and folks are shooting at each other.”
High school “fight pages” are now common on social media, and teens are quick to record and share fights as soon as they break out.
“Social media puts everything on steroids,” said the Rev. Cornell Jones, the group violence intervention coordinator for Pittsburgh.
Like adults, many young people feel validated when their posts are liked and shared, Jones said.
“We are dealing with young people who don’t have great self-esteem, and this ‘love’ they are getting on social media can fill some of that void,” Jones said. “But it can end with them getting shot or going to the penitentiary.”
While many of today’s teens are technologically sophisticated — skilled at filming and editing professional-looking videos — they remain naive about the consequences of posting violent content, said Evans, of the University of South Carolina.
Police in Los Angeles now monitor social media for early signs of trouble, Moore said. Police also search social media after the fact to gather evidence against those involved in violence.
“People want to gain notoriety,” Moore said, “but they’re clearly implicating themselves and giving us an easy path to bring them to justice.”
They can come and scream and I won’t fuss at them.
In February, New Jersey police used a video of a 14-year-old girl’s vicious school beating to file criminal charges against four teens. The victim of the assault, Adriana Kuch, died by suicide two days after the video went viral.
Preventing the Next Tragedy
Glen Upshaw, who manages outreach workers at Youth Alive in Oakland, said he encourages teens to express their anger with him rather than on social media. He absorbs it, he said, to help prevent kids from doing something foolish.
“I’ve always offered youth the chance to call me and curse me out,” Upshaw said. “They can come and scream and I won’t fuss at them.”
Workers at Youth Advocate Programs monitor influential social media accounts in their communities to de-escalate conflicts. “The idea is to get on it as soon as possible,” Fogg said. “We don’t want people to die over a social media post.”
It’s sometimes impossible, Campos said. “You can’t tell them to delete their social media accounts,” he said. “Even a judge won’t tell them that. But I can tell them, ‘If I were you, since you’re on probation, I wouldn’t be posting those kinds of things.’”
When he first worked with teens at high risk of violence, “I said if I can save 10 lives out of 100, I’d be happy,” Campos said. “Now, if I can save one life out of 100, I’m happy.”
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
She was taking care of her father, now 86, who has been in and out of hospitals and rehabs after a worsening series of strokes in recent years.
Working from home for a rental property company, she could handle it. In fact, like most family caregivers during the early days of covid-19, she had to handle it. Community programs for the elderly had shut down.
Work-from-home made it much easier for caregivers to take care of their loved ones and improve the quality of life those they were responsible for during the COVID-19 pandemic.
In theory, the national debate about remote or hybrid work is one great big teachable moment about the demands on the 53 million Americans taking care of an elderly or disabled relative.
But the “return to office” debate has centered on commuting, convenience, and child care. That fourth C, caregiving, is seldom mentioned.
That’s a missed opportunity, caregivers and their advocates say.
Employers and co-workers understand the need to take time off to care for a baby. But there’s a lot less understanding about time to care for anyone else. “We need to destigmatize it and create a culture where it’s normalized, like birth or adoption,” said Karen Kavanaugh, chief of strategic initiatives at the Rosalynn Carter Institute for Caregivers. For all the talk of cradle to grave, she said, “mostly, it’s cradle.”
She’s also not alone. About one-fifth of U.S. workers are family caregivers, and nearly a third have quit a job because of their caregiving responsibilities, according to a report from the Rosalynn Carter Institute. Others cut back their hours. The Rand Corp. has estimated that caregivers lose half a trillion dollars in family income each year — an amount that’s almost certainly gone up since the report was released nearly a decade ago.
Workplace flexibility, however desirable, is no substitute for a national long-term care policy, a viable long-term care insurance market, or paid family leave, none of which are on Washington’s radar.
President Joe Biden gave family caregivers a shoutout in his State of the Union address in February and followed up in April with an executive order aimed at supporting caregivers and incorporating their needs in planning federal programs, including Medicare and Medicaid. Last year, his Department of Health and Human Services released a National Strategy to Support Family Caregivers outlining how federal agencies can help and offering road maps for the private sector.
Although Biden checked off priorities and potential innovations, he didn’t offer any money. That would have to come from Congress. And Congress right now is locked in a battle over cutting spending, not increasing it.
They cashed in his retirement fund to hire part-time caregivers.
So that leaves it up to families.
Remote work can’t fill all the caregiving gaps, particularly when the patient has advanced disease or dementia and needs intense round-the-clock care from a relative who is also trying to do a full-time job from the kitchen table.
But there are countless scenarios in which the option to work remotely is an enormous help.
When a disease flares up. When someone is recuperating from an injury, an operation, or a rough round of chemo. When a paid caregiver is off, or sick, or AWOL. When another family caregiver, the person who usually does the heavy lift literally or metaphorically, needs respite.
“Being able to respond to time-sensitive needs for my dad at the end of his life, and to be present with my stepmother, who was the 24/7 caregiver, was an incredible blessing,” said Gretchen Alkema, a well-known expert in aging policy who now runs a consulting firm and was able to work from her dad’s home as needed.
That flexibility is what Rose Garcia has come to appreciate, as a small-business owner and a caregiver for her husband.
Garcia’s husband and business partner, Alex Sajkovic, has Lou Gehrig’s disease. Because of his escalating needs and the damage the pandemic wrought on their San Francisco stone and porcelain design company, she downsized and redesigned the business. They cashed in his retirement fund to hire part-time caregivers. She goes to work in person sometimes, particularly to meet architects and clients, which she enjoys. The rest of the time she works from home.
As it happened, two of her employees also had caregiving obligations. Her experience, she said, made her open to doing things differently.
For one employee, a hybrid work schedule didn’t work out. She had many demands on her, plus her own serious illness, and couldn’t make her schedule mesh with Garcia’s. For the other staff member, who has a young child and an older mother, hybrid work let her keep the job.
If caregivers quit or go part time, they lose pay, benefits, Social Security, and retirement savings.
A third worker comes in full time, Garcia said. Since he’s often alone, his dogs come too.
In Lincoln, Nebraska, Sarah Rasby was running the yoga studio she co-owned, teaching classes, and taking care of her young children. Then, at 35, her twin sister, Erin Lewis, had a sudden cardiac event that triggered an irreversible and ultimately fatal brain injury. For three heartbreaking years, her sister’s needs were intense, even when she was in a rehab center or nursing home. Rasby, their mother, and other family members spent hour after hour at her side.
Rasby, who also took on all the legal and paperwork tasks for her twin, sold the studio.
“I’m still playing catch-up from all those years of not having income,” said Rasby, now working on a graduate degree in family caregiving.
Economic stress is not unusual. Caregivers are disproportionately women. If caregivers quit or go part time, they lose pay, benefits, Social Security, and retirement savings.
“It’s really important to keep someone attached to the labor market,” the Rosalynn Carter Institute’s Kavanaugh said. Caregivers “prefer to keep working. Their financial security is diminished when they don’t — and they may lose health insurance and other benefits.”
But given the high cost of home care, the sparse insurance coverage for it, and the persistent workforce shortages in home health and adult day programs, caregivers often feel they have no choice but to leave their jobs.
Temote and hybrid work is mostly for people whose jobs are largely computer-based. A restaurant server can’t refill a coffee cup via Zoom.
At the same time, though, more employers, facing a competitive labor market, are realizing that flexibility regarding remote or hybrid work helps attract and retain workers. Big consultant companies like BCG offer advice on “the working caregiver.”
Successful remote work during the pandemic has undercut bosses’ abilities to claim, “You can’t do your job like that,” observed Rita Choula, director of caregiving for the AARP Public Policy Institute. It’s been more common in recent years for employers to offer policies that help workers with child care. Choula wants to see them expanded “so that they represent a broad range of caregiving that occurs across life.”
Yet, even with covid’s reframing of in-person work, telecommuting is still not the norm. A March report from the Bureau of Labor Statistics found only 1 in 4 private businesses had some or all of their workforce remote last summer — a dropoff from 40% in 2021, the second pandemic summer. Only about 1 in 10 workplaces are fully remote.
And remote and hybrid work is mostly for people whose jobs are largely computer-based. A restaurant server can’t refill a coffee cup via Zoom. An assembly line worker can’t weld a car part from her father-in-law’s bedside.
But even in the service and manufacturing sectors, willing employers can explore creative solutions, like modified shift schedules or job shares, said Kavanaugh, who is running pilot programs with businesses in Michigan. Cross-training so workers can fill in for one another when one has to step into caregiving is another strategy.
She also needs to be in. “Every night, he says, ‘Thank you for all you do,’” she said of her father. “I tell him, ‘I do this because I love you.’”
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
Social and economic pressures have long compelled Black girls and women to straighten their hair to conform to Eurocentric beauty standards.
Deanna Denham Hughes was stunned when she was diagnosed with ovarian cancer last year. She was only 32. She had no family history of cancer, and tests found no genetic link. Hughes wondered why she, an otherwise healthy Black mother of two, would develop a malignancy known as a “silent killer.”
After emergency surgery to remove the mass, along with her ovaries, uterus, fallopian tubes, and appendix, Hughes said, she saw an Instagram post in which a woman with uterine cancer linked her condition to chemical hair straighteners.
“I almost fell over,” she said from her home in Smyrna, Georgia.
When Hughes was about 4, her mother began applying a chemical straightener, or relaxer, to her hair every six to eight weeks. “It burned, and it smelled awful,” Hughes recalled. “But it was just part of our routine to ‘deal with my hair.’”
The routine continued until she went to college and met other Black women who wore their hair naturally. Soon, Hughes quit relaxers.
Social and economic pressures have long compelled Black girls and women to straighten their hair to conform to Eurocentric beauty standards. But chemical straighteners are stinky and costly and sometimes cause painful scalp burns. Mounting evidence now shows they could be a health hazard.
African American women’s often frequent and lifelong application of chemical relaxers to their hair and scalp might explain why hormone-related cancers kill disproportionately more Black than white women, say researchers and cancer doctors.
“What’s in these products is harmful,” said Tamarra James-Todd, an epidemiology professor at the Harvard T.H. Chan School of Public Health, who has studied straightening products for the past 20 years.
She believes manufacturers, policymakers, and physicians should warn consumers that relaxers might cause cancer and other health problems.
In conversations with patients, Gore sometimes also talks about how African American women once wove messages into their braids about the route to take on the Underground Railroad as they sought freedom from slavery.
But regulators have been slow to act, physicians have been reluctant to take up the cause, and racism continues to dictate fashion standards that make it tough for women to quit relaxers, products so addictive they’re known as “creamy crack.”
Michelle Obama straightened her hair when Barack served as president because she believed Americans were “not ready” to see her in braids, the former first lady said after leaving the White House. The U.S. military still prohibited popular Black hairstyles like dreadlocks and twists while the nation’s first Black president was in office.
California in 2019 became the first of nearly two dozen states to ban race-based hair discrimination. Last year, the U.S. House of Representatives passed similar legislation, known as the CROWN Act, for Creating a Respectful and Open World for Natural Hair. But the bill failed in the Senate.
The need for legislation underscores the challenges Black girls and women face at school and in the workplace.
“You have to pick your struggles,” said Atlanta-based surgical oncologist Ryland Gore. She informs her breast cancer patients about the increased cancer risk from relaxers. Despite her knowledge, however, Gore continues to use chemical straighteners on her own hair, as she has since she was about 7 years old.
“Your hair tells a story,” she said.
In conversations with patients, Gore sometimes also talks about how African American women once wove messages into their braids about the route to take on the Underground Railroad as they sought freedom from slavery.
“It’s just a deep discussion,” one that touches on culture, history, and research into current hairstyling practices, she said. “The data is out there. So patients should be warned, and then they can make a decision.”
The first hint of a connection between hair products and health issues surfaced in the 1990s. Doctors began seeing signs of sexual maturation in Black babies and young girls who developed breasts and pubic hair after using shampoo containing estrogen or placental extract. When the girls stopped using the shampoo, the hair and breast development receded, according to a study published in the journal Clinical Pediatrics in 1998.
A 2017 study found white women who used chemical relaxers were nearly twice as likely to develop breast cancer as those who did not use them.
Since then, James-Todd and other researchers have linked chemicals in hair products to a variety of health issues more prevalent among Black women — from early puberty to preterm birth, obesity, and diabetes.
In recent years, researchers have focused on a possible connection between ingredients in chemical relaxers and hormone-related cancers, like the one Hughes developed, which tend to be more aggressive and deadly in Black women.
A 2017 study found white women who used chemical relaxers were nearly twice as likely to develop breast cancer as those who did not use them. Because the vast majority of the Black study participants used relaxers, researchers could not effectively test the association in Black women, said lead author Adana Llanos, an associate professor of epidemiology at Columbia University’s Mailman School of Public Health.
Researchers did test it in 2020.
The so-called Sister Study, a landmark National Institute of Environmental Health Sciences investigation into the causes of breast cancer and related diseases, followed 50,000 U.S. women whose sisters had been diagnosed with breast cancer and who were cancer-free when they enrolled. Regardless of race, women who reported using relaxers in the prior year were 18% more likely to be diagnosed with breast cancer. Those who used relaxers at least every five to eight weeks had a 31% higher breast cancer risk.
Nearly 75% of the Black sisters used relaxers in the prior year, compared with only 3% of the non-Hispanic white sisters. Three-quarters of Black women also self-reported using the straighteners as adolescents, and frequent use of chemical straighteners during adolescence raised the risk of pre-menopausal breast cancer, a 2021 NIH-funded study in the International Journal of Cancer found.
Another 2021 analysis of the Sister Study data showed sisters who self-reported that they frequently used relaxers or pressing products doubled their ovarian cancer risk. In 2022, another study found frequent use more than doubled uterine cancer risk.
After researchers discovered the link with uterine cancer, some called for policy changes and other measures to reduce exposure to chemical relaxers.
“It is time to intervene,” Llanos and her colleagues wrote in a Journal of the National Cancer Institute editorial accompanying the uterine cancer analysis. While acknowledging the need for more research, they issued a “call for action.”
No one can say that using permanent hair straighteners will give you cancer, Llanos said in an interview. “That’s not how cancer works,” she said, noting that some smokers never develop lung cancer, despite tobacco use being a known risk factor.
The body of research linking hair straighteners and cancer is more limited, said Llanos, who quit using chemical relaxers 15 years ago. But, she asked rhetorically, “Do we need to do the research for 50 more years to know that chemical relaxers are harmful?”
Charlotte Gamble, a gynecological oncologist whose Washington, D.C., practice includes Black women with uterine and ovarian cancer, said she and her colleagues see the uterine cancer study findings as worthy of further exploration — but not yet worthy of discussion with patients.
“The jury’s out for me personally,” she said. “There’s so much more data that’s needed.”
Not long ago, she considered chemically straightening her hair for an academic job interview because she didn’t want her hair to “be a hindrance” when she appeared before white professors.
Meanwhile, James-Todd and other researchers believe they have built a solid body of evidence.
“There are enough things we do know to begin taking action, developing interventions, providing useful information to clinicians and patients and the general public,” said Traci Bethea, an assistant professor in the Office of Minority Health and Health Disparities Research at Georgetown University.
Responsibility for regulating personal-care products, including chemical hair straighteners and hair dyes — which also have been linked to hormone-related cancers — lies with the Food and Drug Administration. But the FDA does not subject personal-care products to the same approval process it uses for food and drugs. The FDA restricts only 11 categories of chemicals used in cosmetics, while concerns about health effects have prompted the European Union to restrict the use of at least 2,400 substances.
In March, Reps. Ayanna Pressley (D-Mass.) and Shontel Brown (D-Ohio) asked the FDA to investigate the potential health threat posed by chemical relaxers. An FDA representative said the agency would look into it.
Natural hairstyles are enjoying a resurgence among Black girls and women, but many continue to rely on the creamy crack, said Dede Teteh, an assistant professor of public health at Chapman University.
She had her first straightening perm at 8 and has struggled to withdraw from relaxers as an adult, said Teteh, who now wears locs. Not long ago, she considered chemically straightening her hair for an academic job interview because she didn’t want her hair to “be a hindrance” when she appeared before white professors.
Teteh led “The Cost of Beauty,” a hair-health research project published in 2017. She and her team interviewed 91 Black women in Southern California. Some became “combative” at the idea of quitting relaxers and claimed “everything can cause cancer.”
Their reactions speak to the challenges Black women face in America, Teteh said.
“It’s not that people do not want to hear the information related to their health,” she said. “But they want people to share the information in a way that it’s really empathetic to the plight of being Black here in the United States.”
Kara Nelson of KFF Health News contributed to this report.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
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