Tag: Audio

Some Roadblocks to Lifesaving Addiction Treatment Are Gone. Now What?

For two decades — as opioid overdose deaths rose steadily — the federal government limited access to buprenorphine, a medication that addiction experts consider the gold standard for treating patients with opioid use disorder. Study after study shows it helps people continue addiction treatment while reducing the risk of overdose and death.

Clinicians who wanted to prescribe the medicine had to complete an eight-hour training. They could treat only a limited number of patients and had to keep special records. They were given a Drug Enforcement Administration registration number starting with X, a designation many doctors say made them a target for drug-enforcement audits.

“Just the process associated with taking care of our patients with a substance use disorder made us feel like, ‘Boy, this is dangerous stuff,’” said Dr. Bobby Mukkamala, who chairs an American Medical Association task force addressing substance use disorder.

“The science doesn’t support that but the rigamarole suggested that.”

That rigamarole is mostly gone. Congress eliminated what became known as the “X-waiver” in legislation President Joe Biden signed late last year. Now begins what some addiction experts are calling a “truth serum moment.”

Were the X-waiver and the burdens that came with it the real reason only about 7% of clinicians in the U.S. were cleared to prescribe buprenorphine? Or were they an excuse that masked hesitation about treating addiction, if not outright disdain for these patients?

There’s great optimism among some leaders in the field that getting rid of the X-waiver will expand access to buprenorphine and reduce overdoses. One study from 2021 shows taking buprenorphine or methadone, another opioid agonist treatment, reduces the mortality risk for people with opioid dependence by 50%. The medication is an opioid that produces much weaker effects than heroin or fentanyl and reduces cravings for those deadlier drugs.

The nation’s drug czar, Dr. Rahul Gupta, said getting rid of the X-waiver would ultimately prevent millions of deaths.

“The impact of this will be felt for years to come,” Gupta said. “It is a true historic change that, frankly, I could only dream of being possible.”

Gupta and others envision obstetricians prescribing buprenorphine to their pregnant patients, infectious disease doctors adding it to their medical toolbox, and lots more patients starting buprenorphine when they come to emergency rooms, primary care clinics, and rehabilitation facilities.

We are “transforming the way we think to make every moment an opportunity to start this treatment and save someone’s life,” said Dr. Sarah Wakeman, the medical director for substance use disorder at Mass General Brigham in Boston.

Wakeman said clinicians she has been contacting for the past decade are finally willing to consider treating patients with buprenorphine. Still, she knows stigma and discrimination could undermine efforts to help those who aren’t being served. In 2021, a national survey showed just 22% of people with opioid use disorder received medications such as buprenorphine and methadone.

The test of whether clinicians will step up and if prescribing will become more widespread is underway in hospitals and clinics across the country as patients struggling with addiction queue up for treatment. A woman named Kim, 65, is among them.

Kim’s recent visit to the Greater New Bedford Community Health Center in southern Massachusetts began in an exam room with Jamie Simmons, a registered nurse who runs the center’s addiction treatment program but doesn’t have prescribing powers. KHN agreed to use only Kim’s first name to limit potential discrimination linked to her drug use.

Kim told Simmons that buprenorphine had helped her stay off heroin and avoid an overdose for nearly 20 years. Kim takes a medication called Suboxone, a combination of buprenorphine and naloxone, which comes in the form of thin, filmlike strips she dissolves under her tongue.

“It’s the best thing they could have ever come out with,” Kim said. “I don’t think I ever even had a desire to use heroin since I’ve been taking them.”

Buprenorphine can produce mild euphoria and slow breathing but there’s a ceiling on the effects. Patients like Kim may develop a tolerance and not experience any effects.

“I don’t get high on Suboxones,” Kim said. “They just keep me normal.”

Still, many clinicians have been hesitant to use buprenorphine — known as a partial opioid agonist — to treat an addiction to more deadly forms of the drug.

Kim’s primary care doctor at the health center never applied for an X-waiver. So for years Kim bounced from one treatment program to another, seeking a prescription. During lapses in her access to buprenorphine, the cravings returned — an especially scary prospect after the powerful opioid fentanyl largely replaced heroin on the streets of Massachusetts, where Kim lives.

“I’ve seen so many people fall out in the last month,” Kim said, using a slang term for overdosing. “That stuff is so strong that within a couple minutes, boom.”

Because fentanyl can kill so quickly, the benefits of taking buprenorphine and other medications to treat opioid use disorder have increased as deaths linked to even stronger types of fentanyl rise.

Buprenorphine is present in a small percentage of overdose deaths nationwide, 2.6%. Of those, 93% involved a mix of one or more other drugs, often benzodiazepines. Fentanyl is in 94% of overdose deaths in Massachusetts.

“Bottom line is, fentanyl kills people, buprenorphine doesn’t,” Simmons said.

That reality added urgency to Kim’s health center visit because Kim took her last Suboxone before arriving; her latest prescription had run out.

Cravings for heroin could have returned in about a day if she didn’t get more Suboxone. Simmons confirmed the dose and told Kim that her primary care doctor might be willing to renew the prescription now that the X-waiver is not required. But Dr. Than Win had some concerns after reviewing Kim’s most recent urine test. It showed traces of cocaine, fentanyl, marijuana, and Xanax, and Win said she was worried about how the street drugs might interact with buprenorphine.

“I don’t want my patients to die from an overdose,” Win said. “But I’m not comfortable with the fentanyl and a lot of narcotics in the system.”

Kim was adamant that she did not intentionally ingest fentanyl, saying it might have been in the cocaine she said her roommate shares occasionally. Kim said she takes the Xanax to sleep. Her drug use presents complications that many primary care doctors don’t have experience managing. Some clinicians are apprehensive about using an opioid to treat an addiction to opioids, despite compelling evidence that doing so can save patients’ lives.

Win was worried about writing her first prescription for Suboxone. But she agreed to help Kim stay on the medication.

“I wanted to start with someone a little bit easier,” Win said. “It’s hard for me; that’s the reality and truth.”

About half of the providers at the Greater New Bedford health center had an X-waiver when it was still required. Attributing some of the resistance to having the waiver to stigma or misunderstanding about addiction, Simmons urged doctors to treat addiction as they would any other disease.

“You wouldn’t not treat a diabetic; you wouldn’t not treat a patient who is hypertensive,” Simmons said. “People can’t control that they formed an addiction to an opiate, alcohol, or a benzo.”

Searching for Solutions to Soften Stigma

Although the restrictions on buprenorphine prescribing are no longer in place, Mukkamala said the perception created by the X-waiver lingers.

“That legacy of elevating this to a level of scrutiny and caution —that needs to be sort of walked back,” Mukkamala said. “That’s going to come from education.”

Mukkamala sees promise in the next generation of doctors, nurse practitioners, and physician assistants coming out of schools that have added addiction training. The AMA and the American Society of Addiction Medicine have online resources for clinicians who want to learn on their own.

Some of these resources may help fulfill a new training requirement for clinicians who prescribe buprenorphine and other controlled narcotics. It will take effect in June. The DEA has not issued details about the training.

But training alone may not shift behavior, as Rhode Island’s experience shows.

The number of Rhode Island practitioners approved to prescribe buprenorphine increased roughly threefold from 2016 to 2022 after the state said physicians in training should obtain an X-waiver. Still, having the option to prescribe buprenorphine “didn’t open the floodgates” for patients in need of treatment, said Dr. Jody Rich, an addiction specialist who teaches at Brown University. From 2016 to 2022, when the number of qualified prescribers increased, the number of patients taking buprenorphine also increased, but by a much smaller percentage.

“It all comes back to stigma,” Rich said.

He said long-standing resistance among some providers to treating addiction is shifting as younger people enter medicine. But tackling the opioid crisis can’t wait for a generational change, he said. To expand buprenorphine access now, states could use pharmacists, partnered with doctors, to help manage the care of more patients with opioid use disorder, Rich’s research shows.

Wakeman, at Mass General Brigham, said it might be time to hold clinicians who don’t provide addiction care accountable through quality measures tied to payments.

“We’re expected to care for patients with diabetes or to care for patients with heart attack in a certain way and the same should be true for patients with an opioid use disorder,” Wakeman said.

One quality measure to track could be how often prescribers start and continue buprenorphine treatment. Wakeman said it would help also if insurers reimbursed clinics for the cost of staff who aren’t traditional clinicians but are critical in addiction care, like recovery coaches and case managers.

Will Ending the X-Waiver Close Racial Gaps?

Wakeman and others are paying especially close attention to whether eliminating the X-waiver helps narrow racial gaps in buprenorphine treatment. The medication is much more commonly prescribed to white patients with private insurance or who can pay cash. But there are also stark differences by race at some health centers where most patients are on Medicaid and would seem to have equal access to the addiction treatment.

At the New Bedford health center, Black patients represent 15% of all patients but only 6% of those taking buprenorphine. For Hispanics, it is 30% to 23%. Most of the health center patients prescribed buprenorphine, 61%, are white, though white patients make up just 36% of patients overall.

Dr. Helena Hansen, who co-authored a book on race in the opioid epidemic, said access to buprenorphine doesn’t guarantee that patients will benefit from it.

“People are not able to stay on a lifesaving medication unless the immense instability in housing, employment, social supports — the very fabric of their communities — is addressed,” Hansen said. “That’s where we fall incredibly short in the United States.”

Hansen said expanding access to buprenorphine has helped reduce overdose deaths dramatically among all drug users in France, including those with low incomes and immigrants. There, patients with opioid use disorder are seen in their communities and offered a wide range of social services.

“Removing the X-waiver,” Hansen said, “is not in itself going to revolutionize the opioid overdose crisis in our country. We would need to do much more.”

This article is part of a partnership that includes WBURNPR, and KHN.

Listen to ‘Tradeoffs’: Medical Debt Delivers ‘A Shocking Amount of Misery’

The numbers that tell the story of medical debt in the U.S. are staggering: Around 100 million Americans have health care debt, and together they owe at least $140 billion. And research suggests this debt can have striking consequences on people’s financial, physical, and mental health.

In this episode of the “Tradeoffs” podcast, Dan Gorenstein talks about the pain and possible solutions to medical debt with KHN senior correspondent Noam N. Levey and UCLA researcher Wes Yin.

“About a third of people who have medical debt owe less than $1,000,” Levey said. “But a quarter of people owe, I think, more than $5,000. More than half say they’ve had to make a difficult sacrifice, like using up all their savings, moving in with friends and family, or losing their homes. So I don’t think it’s hyperbole to say that there’s a shocking amount of misery out there.”

Listen to the Latest ‘KHN Health Minute’

Mar. 9

The KHN Health Minute this week looks at the risks of a social-media craze, the Brazilian butt lift, and what Eli Lilly’s slashing of insulin prices could mean for folks with diabetes.

Mar. 2

The KHN Health Minute this week looks at how profit-driven policies influence emergency room staffing and why Mark Cuban’s new discount drug company may not always be the cheapest option.

Feb. 23

On this week’s KHN Health Minute, hear about how Twitter users are shaping insulin policy and how covid vaccines may protect your heart.

Feb. 16

The KHN Health Minute this week looks at how the end of the public health emergency will affect pricing for covid tests and treatments, and issues a warning about kids getting into marijuana edibles.

Feb. 9

Tune in to the KHN Health Minute this week to hear how unusual changes in spending can be an early warning of dementia, and why the safest way to drive and use a phone in your car … is not to.

Feb. 2

The KHN Health Minute this week previews abortion debates in statehouses now that federal protections are gone and looks at what’s driving the closure of nursing homes around the country. 

Jan. 26

This week’s “KHN Health Minute” nudges listeners to have an antiviral care plan before covid hits, and looks at how medical emergencies like Damar Hamlin’s heart attack can affect NFL players’ mental health.

Jan. 19

Tune in to the “KHN Health Minute” this week to learn how your smartphone could become your doctor’s newest diagnostic tool and the importance of taking morning sickness symptoms seriously.  

Jan. 12

Tune in to the “KHN Health Minute” this week to hear how noise pollution affects our health and why an optimistic outlook may help you live longer.  

The KHN Health Minute is available every Thursday on CBS News Radio.

Listen: With Abortion Rights on the Ballot in Michigan, Women Tell Their Stories

One patient had two toddlers already and was trying to extract herself from an abusive relationship. Another ended up in Michigan after trying to get care in her home state of Ohio; she was handed a Bible at a crisis pregnancy center but no abortion pills. A third thought her childbearing years were behind her and had been looking forward to rejoining the workforce.

All three women sought abortion care at Northland Family Planning Center in Sterling Heights, a city in the metro Detroit area. And all told their stories to reporter Kate Wells as she embedded in the clinic for nine days in August and September. Wells’ story, produced in partnership with KHN, aired on NPR’s “Morning Edition” on Nov. 3. (The story includes audio of one woman’s abortion procedure that some listeners may find disturbing.)

Northland was started in 1976 by Renee Chelian. She had undergone an illegal abortion at age 16, back in 1966, seven years before Roe v. Wade. In recent months, patients have been traveling to Northland’s three locations from Wisconsin, Indiana, Oklahoma, even as far as Florida and Texas.

But abortion rights in Michigan are far from certain. So far, courts have blocked enforcement of a 1931 law that bans the procedure with no exceptions for rape or incest. But the judicial wrangling has been confusing. On Aug. 1, for example, rapid-fire court rulings meant that abortion in Michigan was legal at breakfast, illegal at lunchtime, and legal once again by dinner.

Michigan voters decide Nov. 8 whether abortion stays legal in the state. What’s known as Proposal 3 would explicitly enshrine in the Michigan Constitution the right to abortion, as well as other reproductive rights.

This story is part of a partnership that includes Michigan RadioNPR, and KHN.

Post-‘Roe,’ Contraceptive Failures Carry Bigger Stakes

Birth control options have improved over the decades. Oral contraceptives are now safer, with fewer side effects. Intrauterine devices can prevent pregnancy 99.6% of the time. But no prescription drug or medical device works flawlessly, and people’s use of contraception is inexact.

“No one walks into my office and says, ‘I plan on missing a pill,’” said obstetrician-gynecologist Dr. Mitchell Creinin.

“There is no such thing as perfect use, we are all real-life users,” said Creinin, a professor at the University of California-Davis who wrote a widely used textbook that details contraceptive failure rates.

Even when the odds of contraception failure are small, the number of incidents can add up quickly. More than 47 million women of reproductive age in the United States use contraception and, depending on the birth control method, hundreds of thousands of unplanned pregnancies can occur each year. With most abortions outlawed in at least 13 states and legal battles underway in others, contraceptive failures now carry bigger stakes for tens of millions of Americans.

Researchers distinguish between the perfect use of birth control, when a method is used consistently and correctly every time, and typical use, when a method is used in real-life circumstances. No birth control, short of a complete female sterilization, has a 0.00% failure rate.

The failure rate for typical use of birth control pills is 7%. For every million women taking pills, 70,000 unplanned pregnancies could occur in a year. According to the most recent data available, more than 6.5 million women ages 15 to 49 use oral contraceptives, leading to about 460,000 unplanned pregnancies.

A chart is titled, "The typical use failure rate for birth control pills in 7%". A subtitle reads, "7 out of 100 women on pills could experience pregnancy in the first year of use." Below the text are 100 stick figures, 7 of which are highlighted in orange. Text underneath the figures reads, "460,000 unplanned pregnancies could occur in the nearly 6,580,000 women who take pills."
(Emma Lee Gometz / Science Friday)

Even seemingly minuscule failure rates of IUDs and birth control implants can lead to surprises.

An intrauterine device releases a hormone that thickens the mucus on the cervix. Sperm hit the brick wall of mucus and are unable to pass through the barrier. Implants are matchstick-sized plastic rods placed under the skin, which send a steady, low dose of hormone into the body that also thickens the cervical mucus and prevents the ovaries from releasing an egg. But not always. The hormonal IUD and implants fail to prevent pregnancy 0.1% to 0.4% of the time.

Some 4.8 million women use IUDs or implants in the U.S., leading to as many as 5,000 to 20,000 unplanned pregnancies a year.

“We’ve had women come through here for abortions who had an IUD, and they were the one in a thousand,” said Gordon Low, a nurse practitioner at the Planned Parenthood in Little Rock.

Dr. Janet Cathey (left) and Gordon Low, a nurse practitioner, work at Little Rock Planned Parenthood in Arkansas. Republican Gov. Asa Hutchinson expelled Planned Parenthood from Medicaid in 2017, leaving patients unable to get no-cost contraception at the clinic.(Sarah Varney / KHN)

Abortion has been outlawed in Arkansas since the Supreme Court’s ruling on Dobbs v. Jackson Women’s Health Organization in late June. The only exception is when a patient’s death is considered imminent.

Those stakes are the new backdrop for couples making decisions about which form of contraception to choose or calculating the chances of pregnancy.

Another complication is the belief among many that contraceptives should work all the time, every time.

“In medicine, there is never anything that is 100%,” said Dr. Régine Sitruk-Ware, a reproductive endocrinologist at the Population Council, a nonprofit research organization.

All sorts of factors interfere with contraceptive efficacy, said Sitruk-Ware. Certain medications for HIV and tuberculosis and the herbal supplement St. John’s wort can disrupt the liver’s processing of birth control pills. A medical provider might insert an IUD imprecisely into the uterus. Emergency contraception, including Plan B, is less effective in women weighing more than 165 pounds because the hormone in the medication is weight-dependent.

And life is hectic.

“You may have a delay in taking your next pill,” said Sitruk-Ware, or getting to the doctor to insert “your next vaginal ring.”

Using contraception consistently and correctly lessens the chance for a failure but Alina Salganicoff, KFF’s director of women’s health policy, said that for many people access to birth control is anything but dependable. Birth control pills are needed month after month, year after year, but “the vast majority of women can only get a one- to two-month supply,” she said.

Even vasectomies can fail.

During a vasectomy, the surgeon cuts the tube that carries sperm to the semen.

The procedure is one of the most effective methods of birth control — the failure rate is 0.15% — and avoids the side effects of hormonal birth control. But even after the vas deferens is cut, cells in the body can heal themselves, including after a vasectomy.

“If you get a cut on your finger, the skin covers it back up,” said Creinin. “Depending on how big the gap is and how the procedure is done, that tube may grow back together, and that’s one of the ways in which it fails.”

Researchers are testing reversible birth control methods for men, including a hormonal gel applied to the shoulders that suppresses sperm production. Among the 350 participants in the trial and their partners, so far zero pregnancies have occurred. It’s expected to take years for the new methods to reach the market and be available to consumers. Meanwhile, vasectomies and condoms remain the only contraception available for men, who remain fertile for much of their lives.

At 13%, the typical-use failure rate of condoms is among the highest of birth control methods. Condoms play a vital role in stopping the spread of HIV and other sexually transmitted infections, but they are often misused or tear. The typical-use failure rate means that for 1 million couples using condoms, 130,000 unplanned pregnancies could occur in one year.

A chart is titled, "Projected Number of Unplanned Pregnancies by Birth Control Method in the First Year of Use." It displays the dots for four birth control methods with the dots sized by proportion of how many unexpected pregnancies could occur. The largest dot represents male condoms, with 513,000 expected pregnancies. The second largest represents birth control pills, with 460,000 pregnancies. The third largest represents Depo-Provera, contraceptive ring, or patch users, with 102,000 pregnancies. The smallest dot represents IUD or implants, with between 5,000 to 20,000 pregnancies.
(Emma Lee Gometz / Science Friday)

Navigating the failure rates of birth control medicines and medical devices is just one aspect of preventing pregnancy. Ensuring a male sexual partner uses a condom can require negotiation or persuasion skills that can be difficult to navigate, said Jennifer Evans, an assistant teaching professor and health education specialist at Northeastern University.

Historically, women have had little to no say in whether to engage in sexual intercourse and limited autonomy over their bodies, complicating sexual-negotiation skills today, said Evans.

Part of Evans’ research focuses on men who coerce women into sex without a condom. One tactic known as “stealthing” is when a man puts on a condom but then removes it either before or during sexual intercourse without the other person’s knowledge or consent.

“In a lot of these stealthing cases women don’t necessarily know the condom has been used improperly,” said Evans. “It means they can’t engage in any kind of preventative behaviors like taking a Plan B or even going and getting an abortion in a timely manner.”

Evans has found that heterosexual men who engage in stealthing often have hostile attitudes toward women. They report that sex without a condom feels better or say they do it “for the thrill of engaging in a behavior they know is not OK,” she said. Evans cautions women who suspect a sexual partner will not use a condom correctly to not have sex with that person.

“The consequences were already severe before,” said Evans, “but now that Roe v. Wade has been overturned, they’re even more right now.”

This story is a collaboration between KHN and Science Friday. Listen to the conversation between KHN senior correspondent Sarah Varney and Science Friday producer Shoshannah Buxbaum.

Family Caregivers Find Support on #dementia TikTok

It all changed on a Saturday night in New York City in 2016. Jacquelyn Revere was 29 and headed out to attend a friend’s comedy show. She was on the subway when her phone rang. It was a friend of her mom’s, back in Los Angeles. That’s weird, Revere thought. She never calls.

“And while I was on the subway, my mom’s friend said, ‘Something is wrong with your mom,’” Revere said. “‘We don’t know what’s going on, but your mom got lost driving home. What should have been a 15-minute drive ended up taking two hours.’”

Revere flew to L.A. At her mom’s home in Inglewood, she found foreclosure notices, untreated termite damage on the porch, and expired food in the kitchen. Her mother, Lynn Hindmon, was a devout evangelical who worked for her church. A slim, regal self-declared “health nut,” Hindmon was now forgetting to pay bills and couldn’t remember whom she was talking to on the phone.

Revere did not know it then, but that tough time would lead her to find — and help build — a community of caregivers who support one another on social media. TikTok has been an especially helpful platform. Content with the hashtag “dementia” has racked up more than 4 billion views on TikTok, as younger generations, already accustomed to sharing their lives online, now find themselves caring for aging loved ones — often with little preparation and no idea how to do it. Over the past few years, Revere’s account, @MomofMyMom, has become wildly popular, with more than 650,000 followers. Ardent fans have told her they feel like they personally know her and her mom.

It would take nearly a year to get the diagnosis that confirmed what Revere already suspected: Her mother — still in her 50s — had Alzheimer’s disease. Barely 10 years since Revere left home, she found herself moving back in to become a full-time caregiver for her mom and her grandmother, diagnosed with Alzheimer’s years earlier.

“That first year and a half, I was just filled with fear: What if I lose the house?” Revere said.

Because of the stress, she said, “I went through bouts of migraines. My hair, right in the middle, fell out completely.”

“I had to figure out how to get control of all the banking, figure out the passwords, make sure the bills are paid, make sure everything’s taken care of.”

Photos of Jacquelyn Revere as a child hang in the home of her mother, Lynn Hindmon. In one video on her TikTok channel, @MomofMyMom, Revere says seeing the pictures prompted Hindmon to call her “Mommy.” (Lauren Justice for NPR)

In 2017, her grandmother died. Revere’s grief and isolation felt overpowering. Her friends in their 20s either couldn’t relate or thought she was “wallowing in pity,” Revere said.

Trying to make them understand what her daily life was like now seemed impossible. “I just wanted to find people I didn’t have to explain everything to,” she said.

Revere tried a support group for caregivers, an hour’s drive away. But the other attendees were decades older and had more financial resources. “[They] would say, ‘And now I have to take equity out of our house,’ or ‘I’m thinking of reaching into our 401(k).’ And then I would tell my story, and people would be looking at me like … a charity case, or like my problem is unsolvable. … I just felt worse.”

These days Revere no longer feels so alone. She’s a celebrity of sorts on TikTok, at least among the hundreds of thousands of people who post about the difficulties of caring for a loved one with dementia.

Daughters Are Often Dementia Caregivers

Alzheimer’s is the most common form of dementia. Others include vascular, Lewy body, frontotemporal, and mixed dementia, says the Centers for Disease Control and Prevention. Nearly all forms worsen over time, and there is no cure, although there are some treatments.

The task of caring for people with dementia usually falls on family members. Every year, an estimated 16 million Americans provide more than 17 billion hours of unpaid care for relatives or friends suffering from Alzheimer’s disease or other dementias, according to the CDC. About 60% of these caregivers are women.

“Unfortunately, there is not a very strong system of paid support for people with dementia,” said Elena Portacolone, an associate professor who studies aging and cognitive impairment at UCSF’s Institute for Health & Aging. “And so the most common way of supporting persons with dementia is the daughter.”

Like Revere, many of the women who become caregivers end up quitting their jobs. They often find themselves financially vulnerable and “extremely isolated,” said Portacolone.

Another expert, Teepa Snow, said too many caregivers are struggling. Snow, an occupational therapist in North Carolina, runs a company that trains caregivers of people with dementia. Her own how-to videos about practical, compassionate caregiving rack up millions of views. “TikTok is where people are expressing an unmet need,” she said.

Because there’s no cure for dementia, the medical community often treats it the way previous generations of practitioners treated cancer — like “a big black box,” Snow said. Decades ago, when people got cancer, “we didn’t say anything; we didn’t talk about it. We said, ‘Oh, gosh, that’s horrible.’ And people were like, ‘How long have they got?’”

What family members need from the medical system, Snow said, is more understanding of symptoms and how to handle them, more help setting up long-term support systems, and knowledge about how patients can be helped by changes to their dietary, sleep, and exercise habits.

All too often, however, caregivers are left to muddle through the complex tasks of keeping a patient safe. “That’s pretty lonely,” Snow said.

The covid pandemic disrupted or closed down much in-person support for caregivers, including the adult day care center Revere’s mom had been attending five days a week. Desperate to find social connection, Revere did what so many others did as the pandemic stretched on: She got on TikTok. The short video format has attracted caregivers, who find they can document and share the vivid moments of their worlds at home in ways that would be less visceral on text- or photo-centric platforms.

You can watch a woman’s “day in the life” video of caring for her husband with early-onset Alzheimer’s or one of Revere’s @MomofMyMom posts from 2020, which walks viewers through their bath routine.

“It’s bath day,” Revere says at the start of the post, while still lying in bed. “I try my best not to make this an emotionally draining experience,” she sighs. “So let’s begin.”

Bathing someone with dementia can be difficult, even dangerous. They can get disoriented, or feel threatened when someone takes off their clothes or maneuvers them into a wet tub. They may slip and fall, or try to fight their caregiver. Revere has created a soothing, predictable routine for her mother. At the time of this video, Hindmon is 63, and it’s about five years after her Alzheimer’s diagnosis. She’s not speaking much. Lynn Hindmon is tall, with great cheekbones. This day she’s wearing neon-blue leggings and a purple beanie.

Revere starts off by promising her mom a present — which she’ll get after the bath.

Revere walks her audience through the process, sharing what works for them. She turns on some soul music, plugs in the space heater, puts the dog outside, and lays out all her mom’s clothes. “Lure her into my cave,” she says, as her mom enters the bathroom.

The video then cuts to after the bath is over: Mother and daughter are celebrating with a bathroom dance party.

The video got more than 20,000 views. Hundreds of people left comments, saying how they can relate. One comment read: “My mother-in-law passed a year ago this week. This was the most frustrating part of caring for her. Devoted a whole day to getting this done.” Another commenter told Revere, “God Bless you! I know it’s hard. I see you and send so much love your way.”

Revere posted a follow-up right away:

“How many of us are on here?” she said into the camera. “I’ve been, like, looking for people my age that I can relate to, who have the same experience.”

Revere’s following soared from just a couple of thousand followers to more than 650,000. Many people used the comments to talk about their own caregiving struggles. They wanted to see the little victories, like Revere’s gentle, joyful tricks for getting through bath time. They also listen to Revere’s candid confessions.

“Y’all, I have never been so emotionally drained in my life,” she shared in one video. “Caregiving eats your soul. It kills your spirit. It’s constant mourning for years. … And it’s beautiful.”

A woman holds medium-sized yellow down in her lap.
Revere’s mother died in March, after six years of living with Alzheimer’s. Revere received an outpouring of support from viewers of her videos on TikTok. Since then, she’s been figuring out what her life will be after years of caregiving. Now she has time to devote to herself and her dog, Dewey.(Lauren Justice for NPR)

Content Creators Weigh Ethics of Going Public

The intimate, unvarnished depictions of dementia on TikTok have raised ethical issues surrounding privacy, dignity, and consent. There are videos on the internet of adults who haven’t consented to their most vulnerable moments being shared with millions of strangers.

In one TikTok, a woman chronicles her grandmother’s aggression, filming as the elderly woman chases her through the house, fists swinging wildly. Other content creators film the verbal abuse that caregivers can experience.

Beth Kallmyer, vice president for care and support for the Alzheimer’s Association, doesn’t think the people posting these videos intend to be exploitative. “You could tell that the caregivers just felt isolated and frustrated and at their wits’ end, with no resources,” she said.

“If I were talking to a family member … considering doing this,” Kallmyer said, “those are the questions I would pose to them: Would they [the person with dementia] be comfortable with this? Is there a way for you to film something that gets the idea across but maintains their dignity?

“Should we have a video of somebody that isn’t fully clothed? Or maybe [before Alzheimer’s] they only went outside when they were dressed to the nines or really put together, and you’ve got them in pajamas or sweatpants or whatever, and they don’t have makeup on. I’m not sure that’s the best way to go about using TikTok.”

Revere has a video that, in retrospect, she now feels ambivalent about posting. It’s the most-watched video on her channel, with 27 million views. In it, her mother is walking around the living room with an open bottle of mouthwash. She somehow got past the locks on the bathroom cabinets.

Lynn Hindmon thinks the mouthwash is a drink, like juice or milk. She looks frustrated and dazed as Revere tries to explain why she can’t drink mouthwash.

With some negotiation, Revere gets her mom to hand it over in exchange for an ice pop.

Some comments on that post call her mom an alcoholic, or say she looked scary. The experience made Revere feel protective — like she needed to be more careful, as she didn’t want to post anything that might put her mom in a bad light. Still, after much consideration, she decided to keep the mouthwash video up. She said it’s a good example of “redirecting” away from a risk — something other caregivers would understand.

On March 9, Jacquelyn Revere posted another video on TikTok, letting her followers know her mother had died. She was 65.

On TikTok, the messages of surprise and condolence poured in.

Revere, an only child, had always assumed that when her mom died she’d mourn her alone. Instead, people were checking in on her, sending her gifts, sharing memories of their favorite videos of Hindmon.

“It’s been the least lonely I’ve ever been throughout this experience, actually,” she said.

Revere has continued to post on @MomofMyMom, talking about what it feels like to miss her mom, and to mourn the life she didn’t live while she was caring for her.

Now she has time to go on dates, get a pedicure, or drive by the ocean.

After six years of caring for her mom, starting when she was just 29, Revere is now trying to figure out who she is now — and what she wants. She knows she wants to stay connected with dementia caregivers.

“I just want them to know that they’re being thought about,” Revere says. “Because that’s what I needed most. Just to know that life isn’t passing me by, and I’m not seen.

“I just want to make sure that they feel seen.”

This story is part of a partnership that includes Michigan RadioNPR, and KHN.

Listen: Grieving Families Face the Cruelest Bills

NPR’s “Consider This” podcast tells the stories of the Markow, Shickel, and Raspe familes. All had very sick infants who died after needing highly technical, very expensive treatment in neonatal intensive care units. Medical bills lived on for each family even after their babies died. “All Things Considered” host Juana Summers spoke to KHN Midwest correspondent Lauren Weber about her reporting on The Cruelest Bills.

In Some States, Voters Will Get to Decide the Future of Abortion Rights

As states grapple with the future of abortion in the U.S., Michigan, California, and Vermont could become the first states to let voters decide whether the right to abortion should be written into the state constitution.

In Michigan, a proposed constitutional amendment would override a 90-year-old state law that makes abortion a felony even in cases of rape or incest. The U.S. Supreme Court’s overturning of Roe v. Wade last month could revive that abortion ban — and has galvanized abortion-rights advocates to secure new protections.

Some of the momentum is coming from activists getting involved for the first time.

“I wanted to do something, but I had no political experience or really any experience in activism,” said Amanda Mazur, who lives in rural northwestern Michigan. “But I thought, ‘Maybe I can volunteer and just offer something tangible to the movement.’”

Michigan organizers like Mazur submitted more than 750,000 signatures — a record number, they said — to state election officials in hopes of having the amendment appear on the November ballot.

If just over half those signatures are validated, Michigan voters will decide whether to amend the state’s constitution to guarantee broad individual rights to “reproductive freedom” that would cover abortion, contraception, and fertility treatments. It would also prevent the state from regulating abortions later in pregnancy if the patient’s “physical or mental health” is at risk.

The ballot initiative has the backing of medical groups like the American College of Obstetricians and Gynecologists, while conservative groups have called it radical and dangerous, claiming it would “allow late-term abortions for practically any reason.”

In California, the push to expand abortion access starts from a very different vantage point: The right to abortion is protected in state statute. And voters will be asked whether they want to enshrine it in the constitution. Proposition 1, which will be on the ballot in November, would prohibit the state from interfering with Californians’ reproductive health decisions, including those related to abortion or contraception.

“I want to know for sure that that right is protected,” state Sen. Toni Atkins (D-San Diego), the Democratic leader in the Senate and lead author of the amendment, said at a legislative hearing in June. “We are protecting ourselves from future courts and future politicians.”

The amendment is one strategy that several California lawmakers are pursuing to protect abortion access in the state. Gov. Gavin Newsom, a Democrat, has signed legislation to eliminate out-of-pocket expenses for abortion for most Californians and to protect California providers that offer abortion services from lawsuits in other states. The recent state budget deal also includes $200 million for reproductive and abortion care.

Earlier this month, Vermont Gov. Phil Scott, a Republican, announced that Proposal 5 will be on the November ballot. He said in a statement: “In Vermont, we solidified the right to choose in law, and now Vermonters have the opportunity to further protect that right in our constitution.”

For Mazur, the desire to “do something” started in 2017, when she and her husband gave their daughter, then 2 years old, some happy news: She was going to be a big sister. The family was thrilled.

But then doctors told Mazur something was wrong.

“I found out halfway through the pregnancy that the baby my husband and I hoped for suffered from a rare and life-limiting genetic condition,” Mazur said. “We ultimately made the compassionate choice to end the pregnancy for my well-being, and for the well-being of our family, and the life of what we thought would be our child.”

Devastated, Mazur turned to a national online support group and met people having similar experiences. But many group members said they were having a tough time finding a way to terminate their pregnancies.

“It really broke my heart that you’re going through this already devastating experience but have to travel far away from your home across the country … [and] advocate for yourself like crazy just to get care that you have decided with your doctor is best for you,” Mazur said.

At the time, abortion rights in Michigan seemed pretty stable, but Mazur’s political awakening found an outlet this year.

Reproductive Freedom for All, a petition group backed by the American Civil Liberties Union of Michigan and Planned Parenthood Advocates of Michigan, was gathering signatures for the constitutional amendment to enshrine abortion protections in state law. The effort took on new urgency in May after a draft of the Supreme Court’s decision in Dobbs v. Jackson Women’s Health Organization was leaked and then published.

“Folks realized that this big, scary thing that they did not think would happen might actually happen,” said Jessica Ayoub, a field organizer with the ACLU of Michigan.

Some Michiganders were registering to vote just to be eligible to sign the petition. Jaynie Hoerauf, a 62-year-old attorney in Farwell, drove 40 miles to attend a rally where she knew she could sign it.

“A bunch of us were so ticked off [about Roe being overturned], and we were talking about it. And I was like, ‘I’m just going to go on and find where I can sign the stupid petition,’” Hoerauf said.

Activists on both sides of the abortion-rights debate expect to spend millions of dollars. They predict that donations will pour in from outside Michigan and that voters in other states will be watching.

“This is just the start of our fight,” Ayoub said. “We know that it is a long road to November.”

KHN correspondent Rachel Bluth contributed to this report.

This story is part of a partnership that includes Michigan RadioNPR, and KHN.