Category: Health

Maryanna’s eyes widened as the waitress delivered dessert, a plate-sized chocolate chip cookie topped with hot fudge and ice cream.

Sitting in a booth at a Cheddar’s in Little Rock, Ark., Maryanna, 16, wasn’t sure of the last time she’d been to a sit-down restaurant. With two children — a daughter she birthed at 14 and a 4-month-old son — and sharing rent with her mother and sister for a cramped apartment with a dwindling number of working lights, Maryanna rarely got out, let alone to devour a Cheddar’s Legendary Monster Cookie.

On this muggy September evening, though, she was having dinner with her “sister friend” Zenobia Harris, who runs the Arkansas Birthing Project, an organization working to reduce the odds that Arkansas women and girls die from pregnancy and childbirth. In a highchair next to her, Maryanna’s daughter, Bry’anna, spiraled sideways and backward, her arms outstretched, flying. Her eyes would settle on her grilled cheese, and she’d swoop her small hand down to pick up the sandwich.

Maryanna suffered mightily during Bry’anna’s birth. (NPR has agreed not to use the family’s last name to protect Maryanna’s privacy.) She remembers telling her mother, “I don’t want to do none of this.” Nurses routinely checked to see how far she had dilated, a painful prodding of the cervix typically done before pain medications are administered.

“Nobody talks about that. I would not open my legs wide enough for them,” she said, cringing at the memory. “There were seven nurses up in there, and I was like, ‘No! Why ya’ll doing this?'”

Hours later, a doctor used vacuum suction to pull the baby through Maryanna’s 14-year-old vaginal canal, ripping apart the skin and muscle of her perineum.

Conservative states have the highest teen birth rates

The U.S. has one of the highest teen birth rates among developed nations, even after three decades of improvement. And Arkansas, roughly tied with Mississippi, has the highest teen birth rate in the country.

A U.S. map of teen birth rates from 2020, the latest data available, looks eerily like the results of the Joe Biden-Donald Trump match-up and, not coincidentally, a post-Roe v. Wade guide to legal and illegal abortion. Liberal-leaning states largely have the lowest teen birth rates per 1,000 females: Massachusetts (6.1), New Hampshire (6.6), Vermont (7), Connecticut (7.6), Minnesota (9.1), New Jersey (9.2), Rhode Island (9.4), New York (10), Oregon (10.1), Maine (10.6), Utah (10.8), California (11).

And conservative states largely have the highest rates: Arkansas (27.8), Mississippi (27.9), Louisiana (25.7), Oklahoma (25), Alabama (24.8), Kentucky (23.8), Tennessee (23.3), West Virginia (22.5), Texas (22.4), New Mexico (21.9).

Teenagers in Arkansas do not have significantly more sex than teens elsewhere, according to a 2019 risk behavior survey by the Centers for Disease Control and Prevention, but they are far less likely to use birth control. Sex education is not required in Arkansas schools and, by law, any school-based curriculum must stress abstinence.

In 2017, Gov. Asa Hutchinson, a Republican, successfully jettisoned Planned Parenthood clinics from the state’s Medicaid program. Since then, girls and women who receive medical care at the organization’s clinics cannot use Medicaid coverage to obtain contraception.

Arkansas’ trigger ban outlawing abortion went into effect the day the Dobbs v. Jackson Women’s Health Organization decision came down in June. A woman can receive an abortion only if her death is imminent. For teenagers seeking medical care to end a pregnancy, the nearest clinic where abortion is accessible is in Illinois — 400 miles northeast of Little Rock and a six-hour drive.

“If you’re from a small town in Arkansas, the idea of going to Chicago or Colorado, it may as well be on the moon,” said Gordon Low, a nurse practitioner at Planned Parenthood in Little Rock. Faced with finding a car and gas money, or dealing with a school absence, teenagers “may throw their hands up and continue with the pregnancy, even if they don’t want to.”

For Maryanna, abortion did not really seem an option even before the Dobbs decision. Like many adolescent girls in Arkansas, her extended family is filled with moms who gave birth as teens and whose children grew up to do the same. It’s the life she knows, and, at least at first, the notion of having a baby seemed a respite from the chaos of her family life.

Bry’anna’s father, who Maryanna believes is 19, is not in the picture. She was in eighth grade when her mother, battling her own stresses, took off — temporarily, it turned out — and left Maryanna and her siblings with her “brother’s baby mother’s family.” Into that stew of terrifying uncertainty, the texts from an older boy felt comforting.

They’d been texting each other for a month, with the boy “acting like he could relate to me,” she said. “He was, like, ‘Your momma gone, so you might as well do this or that.’ I just fell for it.” She remembers thinking, “Yeah, she is gone. She told me to save my virginity, but who listens to her anymore? I was just upset.”

Girls’ menstrual cycles can take years to settle into a predictable routine, and Maryanna initially made nothing of the fact that it had been months since she last bled. By then, her mother had returned and the family was living, periodically, in a motel. She considered adding water to her pee to outsmart the pregnancy test, but, she said, “Something was telling me, ‘No, you want to know the truth.'”

A few months after Bry’anna’s birth, Maryanna had sex with an older teenager who only pretended to put a condom on, she said. She gave birth to her son, Tai’lyn, in April.

The young man’s name is listed on Tai’lyn’s birth certificate, but like Bry’anna’s father, he has never paid child support.

Laws underplay the risks for the teen mom and the baby

Traditionally, teen motherhood is viewed as a symptom of poverty, invoking puzzled head-shaking by wizened adults and calls from many conservative lawmakers for young, unmarried people to stop having sex. But it is also a dangerous undertaking for a teen mother and baby.

Infant mortality rates in Arkansas are highest for babies born to women younger than 20, and the large number of teen births fuels the state’s third-highest infant mortality rate in the country. Arkansas women have the highest rate of pregnancy-related deaths in the U.S., according to data from the CDC, about double the national average.

For young women who continue their pregnancies, the emotional and physical challenges can be daunting. The age at which girls in the U.S. begin menstruating has dropped in recent decades, in part due to widespread obesity, but the physiological changes necessary to birth and feed a newborn require additional years of development.

“When she has her first menstruation, she is capable of becoming pregnant, but that doesn’t mean she is capable of having a child,” said Dr. Dilys Walker, director of global health research for the Bixby Center for Global Reproductive Health at the University of California, San Francisco.

Walker explained that during adolescent development, the beginning of menarche signals the start of a growth spurt that can take up to four years to complete. During that time, a girl’s uterus and bony structures, including her pelvis, remain narrow, developing slowly as she ages.

It’s a precarious moment to give birth. It’s not uncommon for girls to face obstructed labor “because their pelvis is not developed enough to accommodate a vaginal delivery,” said Dr. Sarah Prager, an obstetrics and gynecology professor at the University of Washington School of Medicine.

Going through with a vaginal birth could cause lasting damage to a teen’s pelvic area and rectum. So, teenage childbirth often ends in cesarean section, causing uterine scarring that almost guarantees she will need to give birth via cesarean section if she has more children.

“Adolescents are at increased risk for low-birth-weight babies, high blood pressure in pregnancy, preeclampsia, higher complications from sexually transmitted diseases, and increased rate of infant death,” said Dr. Anne Waldrop, a maternal-fetal medicine fellow at Stanford University.

Abortion opponents have argued in recent months that girls are duty-bound to give birth no matter how old they are. In the high-profile case of a 10-year-old rape victim from Ohio who traveled to Indiana for an abortion, James Bopp, chief counsel for the National Right to Life Committee, said, “She would have had the baby, and as many women who have had babies as a result of rape, we would hope that she would understand the reason and ultimately the benefit of having the child.”

A judge in Florida recently ruled that a 16-year-old girl “had not established by clear and convincing evidence that she was sufficiently mature to decide whether to terminate her pregnancy.”

The elevated risks of teen childbirth were not weighed.

‘No! You got a life ahead of you.’

Hajime White saw what preeclampsia can do to a young woman close-up, when it nearly killed her daughter.

Hajime lives in Warren, a lumber town 90 miles south of Little Rock, where she helps run the Precious Jewels Birthing Project, an offshoot of Zenobia’s Arkansas Birthing Project that offers support for pregnant women and girls and new moms. Hajime was in 11th grade when she got pregnant the first time; the fetus grew without a brain and died inside her. Full of grief, she married her boyfriend. They went on to have six girls, ages 17 to 30, and recently celebrated their 30th wedding anniversary.

On a recent Sunday, after playing piano for the liturgy at St. John African Methodist Episcopal Church, she met her cousin, Monique Davis, at a Mexican restaurant in downtown Warren to assess the needs of the week. Women reach out in need of diapers, breast pumps, formula and, quite frankly, said Hajime, money.

The “sister friends” counsel their “jewels” to take prenatal vitamins and see a doctor. Self-denigration is a common response Hajime will not let stand. “They’ll say, ‘I’ll just be like my mama. I’m not going to amount to nothing.’ And I was like, ‘No! You got a life ahead of you.’ “

That was the message she gave her own daughter Gwen, who became pregnant at 16. Hajime remembered how, when she was a pregnant teen, her grandmother pronounced her life ruined. “She said, ‘Everything you ever did is over with.'”

About a third of the girls who drop out of high school cite pregnancy or parenthood, and Hajime was determined to keep Gwen in school. “She never stopped because she had the support of me, her dad, her sisters,” Hajime said. Two of her daughters are in college, another just graduated from high school, and Gwen earned a degree in pharmacy tech. Her oldest daughter, Majestic, is a certified nursing assistant.

It was a surprise, then, when Gwen, pregnant with her second child at 21, felt piercing pain in her pelvis last spring. Her doctor advised standard pregnancy fare: a pillow between her legs, light stretching. By eight months, Gwen’s petite legs were swollen, stretching tight her ankle bracelets. The doctor blamed too much salt. In July, she was willing herself to enjoy her baby shower when pain ricocheted inside her body. She could barely breathe on the drive to the hospital.

Gwen went in and out of consciousness as the swelling moved into her chest and her face turned dark. “We would try to wake her back up, her eyes would look at us, she was there, but she wasn’t there,” said Hajime. With protein levels in her urine dangerously high, symptoms that had initially been dismissed — water retention, seizures — were now full-fledged preeclampsia, a potentially fatal syndrome marked by rising blood pressure. With the baby in distress, doctors performed a C-section.

Two months later, itty bitty Quen slept on Gwen’s lap inside an air-conditioned studio shed on her mother’s property. Gwen is still recovering. Breastfeeding after surgery has been painful, and she is advised against lifting anything.

Back in Little Rock, in between spoonfuls of Cheddar’s Legendary Monster Cookie, Maryanna said she is dead set on staying un-pregnant. “I can’t mess up again,” she told Zenobia. “I’m kinda scared of sex now. I’m paranoid. Everybody trying to trap you.”

One of Maryanna’s brothers, she confided, recently found out his girlfriend was pregnant. The couple already have an infant. “She can’t afford another baby right now,” Maryanna said. Would she make the journey to Illinois? “I don’t think she has a way out of state.”

KHN (Kaiser Health News) is a national, editorially independent program of KFF, the Kaiser Family Foundation.

As the U.S. heads into a third pandemic winter, the first hints are emerging that another possible surge of COVID-19 infections could be on its way.

So far, no national surge has started yet. The number of people getting infected, hospitalized and dying from COVID in the U.S. has been gently declining from a fairly high plateau.

But as the weather cools and people start spending more time inside, where the virus spreads more easily, the risks of a resurgence increase.

The first hint of what could be in store is what’s happening in Europe. Infections have been rising in many European countries, including the U.K., France, and Italy.

“In the past, what’s happened in Europe often has been a harbinger for what’s about to happen in the United States,” says Michael Osterholm, director of the Center for Infectious Disease Research and Policy at the University of Minnesota. “So I think the bottom line message for us in this country is: We have to be prepared for what they are beginning to see in Europe.”

Several computer models are projecting that COVID infections will continue to recede at least through the end of the year. But researchers stress there are many uncertainties that could change that, such as whether more infectious variants start to spread fast in the U.S.

In fact, scientists are watching a menagerie of new omicron subvariants that have emerged recently that appear to be even better at dodging immunity.

“We look around the world and see countries such as Germany and France are seeing increases as we speak,” says Lauren Ancel Meyers, director of the UT COVID-19 Modeling Consortium at the University of Texas at Austin. “That gives me pause. It adds uncertainty about what we can expect in the coming weeks and the coming months.”

However, it’s not certain the U.S. experience will echo Europe’s, says Justin Lessler, an epidemiologist at the University of North Carolina who helps run the COVID-19 Scenario Modeling Hub.

That’s because it’s not clear whether Europe’s rising cases are related to people’s greater susceptibility to new subvariants they’ve not yet been exposed to. In addition, different countries have different levels of immunity.

“If it is mostly just behavioral changes and climate, we might be able to avoid similar upticks if there is broad uptake of the bivalent vaccine,” Lessler says. “If it is immune escape across several variants with convergent evolution, the outlook for the U.S. may be more concerning.”

In fact, some researchers say the U.S. is already starting to see early signs of that. For example, the levels of virus being detected in wastewater are up in some parts of the country, such in Pennsylvania, Connecticut, Vermont and other parts of the Northeast. That could an early-warning sign of what’s coming, though overall the virus is declining nationally.

“It’s really too early to say something big is happening, but it’s something that we’re keeping an eye on,” says Amy Kirby, national wastewater surveillance program lead at the Centers for Disease Control and Prevention.

But infections and even hospitalizations have started rising in some of the same parts of New England, as well as some other northern areas, such as the Pacific Northwest, according to Dr. David Rubin, the director of the PolicyLab at Children’s Hospital of Philadelphia, which tracks the pandemic.

“We’re seeing the northern rim of the country beginning to show some evidence of increasing transmission,” Rubin says. “The winter resurgence is beginning.”

Assuming no dramatically different new variant emerges, it appears highly unlikely this year’s surge would get as severe as the last two years in terms of severe disease and deaths.

“We have a lot more immunity in the population than we did last winter,” says Jennifer Nuzzo, who runs the Pandemic Center at the Brown University School of Public Health.

“Not only have people gotten vaccinated, but a lot of people have now gotten this virus. In fact, some people have gotten it multiple times. And that does build up [immunity] in the population and reduce overall our risk of severe illness,” Nuzzo says.

Another crucial variable that could affect how the impact of a rise of infections is how many people get one of the new bivalent omicron boosters to shore up their waning immunity.

But booster uptake in the U.S. was already sluggish. “Nearly 50% of people who are eligible for a booster have not gotten one,” says William Hanage, an associate professor of epidemiology at the Harvard T.H. Chan School of Public Health. “It’s wild. It’s really crazy.”

And the demand for the newest boosters is pretty lethargic so far. Fewer than 8 million people have gotten one of the new boosters since they became available over the Labor Day weekend, even though more than 200 million are eligible.

Given the likelihood of a surge, it’s critical that people be up to date on vaccines, says Nuzzo. “The most important thing that we could do is to take off the table that this virus can cause severe illness and death,” she says.

“There are a lot of people who could really benefit from getting boosted but have not done so.”

More than 300,000 women around the world die from cervical cancer each year. In the U.S., women of Haitian descent are diagnosed with it at higher rates than the general population.

The disease is preventable, though, thanks to vaccines and effective treatments for conditions that can precede the cancer. That’s why health care workers and even the World Health Organization are focusing on Miami’s Little Haiti to try to save lives.

The rate of cervical cancer in Little Haiti is 38 per 100,000 people — more than four times Florida’s overall rate of 8 per 100,000, according to a study published in Cancer Causes and Control in July 2018.

One of the authors, Erin Kobetz, the associate director for population sciences and cancer disparity at the University of Miami’s Sylvester Comprehensive Cancer Center, came up with the idea of bringing HPV testing to areas of Miami-Dade County where women are less likely to get regular screenings for cervical cancer at a gynecologist’s office. Human papillomavirus is thought to be responsible for about 50% of cervical cancers.

Kobetz’s work and that of her colleagues, using a recreational vehicle dubbed the Game Changer, grabbed the attention of the WHO. The international health organization announced a lofty goal in August 2020: Eliminate cervical cancer by encouraging countries to get 90% of girls fully vaccinated with the HPV vaccine by age 15; have 70% of women screened for HPV by age 35 and again by age 45; and treat 90% of women who have pre-cancerous conditions. The WHO believes cervical cancer can be eliminated within the next century if countries meet those targets by 2030.

‘Center for Haitian Studies’ brings health care to the people

In Miami, the WHO is relying in large part on public health infrastructure already in place, including the effort initiated by Kobetz. In Little Haiti, this work is happening at a medical clinic called the Center for Haitian Studies, located on a commercial street in the rapidly gentrifying immigrant neighborhood.

On the outside of the building, “CHS-Health” is written in big blue letters. A few small convenience stores and a tax service business are nearby, but most surrounding shops are clothing boutiques and hip cafes or restaurants.

On a weekday morning, the clinic’s street-facing windows filled the waiting area with sunlight, and community health worker Valentine Cesar struck up friendly conversations in Haitian Creole with patients as they waited.

The patients have an easy rapport with Cesar, who works for the University of Miami’s Sylvester center. At the Center for Haitian Studies, she teaches people about preventing cervical cancer by focusing on HPV. Specifically, Cesar shows women how to test themselves using a kit she hands out at the clinic. “We have a little jar, and this is a cotton swab,” she said.

‘The fact that you’re HPV-positive doesn’t mean you have cancer’

The process isn’t much different from using a tampon and is certainly easier than getting a pelvic exam, which is the other way to test for HPV. Self-collected samples are sent to a lab. If the results are positive, Cesar deploys her considerable people skills as she delivers the news.

She acknowledged the panic that comes when she tells people they have HPV. “We explain to them that the fact that you’re HPV-positive, that doesn’t mean that you have cancer,” she said.

It does mean that a woman needs to be vigilant about her health, though, and needs to be monitored for cancer, pre-cancerous conditions, and other problems that can be caused by HPV. Cesar and her colleagues will encourage HPV-positive patients to get care at the Center for Haitian Studies or other federally qualified health centers. The clinic is the Sylvester center’s primary referral partner in Little Haiti because of the cultural and linguistic competence of the staff.

The Sylvester center’s Game Changer vehicle supports the Little Haiti clinic’s education efforts and parks behind it on scheduled days. On other days, the vehicle brings a similar message to different communities in Miami.

“We’re able to promote our services through our various community health workers that go out and talk about what we do, hand out flyers and have educational materials,” said Dinah Trevil, the former director of the Sylvester center’s Office of Outreach and Engagement. “All of that helps us to bring about knowledge and awareness about our services and what we do.”

On a tour of the Game Changer vehicle, Trevil pointed out the video on HPV that was playing and pamphlets that people can use to learn about the virus. The vehicle has a main area with space for sitting, as well as areas for private exams or consultations.

Culturally competent staffers help dispel fear

Trevil understands why Haitian women sometimes avoid seeing a doctor. As she explains it, “They have the belief, ‘If I’m going to the physician’s, I’m going to find out some bad news. I would rather not go.’ “

As health educators, Trevil and Cesar try to talk people out of this avoidance motivated by fear.

Research shows the self-tests for HPV can help more women accept other tests that benefit their reproductive health, Trevil said. “So we started to use this test as a way to address some of the sensitivities and some of the reluctance in women to actually have a Pap test done.”

Patient Nicole Daceus took a self-test for HPV this year after noticing the Game Changer vehicle and the Sylvester center’s name on it. Health fears are not the only hurdle, Daceus said, noting that “people avoid the doctor if they don’t have health insurance or their immigration papers.”

No one at the clinic will ask patients about their immigration status, though — that’s something Cesar and Trevil try to make sure patients know.

How to reach the next generation

Staffers from the Sylvester center explain the issues to mothers, as they encourage them to get their young teenagers vaccinated against HPV. The vaccines for children are given inside another RV, parked a few feet from the Game Changer — the University of Miami’s pediatric mobile clinic. It focuses on care for uninsured children and sets up near public schools, houses of worship and community centers.

“We work in tandem with one another because the mobile clinic is able to provide vaccines, and this way we can make HPV prevention a family affair,” Kobetz said. “Age-eligible boys and girls can get vaccinated.”

Richard Freeman, who works in the WHO’s office of the director-general, visited the vehicles behind the Center for Haitian Studies earlier this year. Freeman said this team’s work is vital to the WHO’s global effort to end cervical cancer. No one, Freeman added, should die from a disease that tests and vaccines can prevent.

“Cervical cancer is the one cancer that we can actually eliminate,” Freeman said. “We have the tools, and all it is a choice of whether or not we’re going to put those tools into use. If we catch this cancer early and we detect it on time, it’s curable. And so we want to see all of these interventions coming — not just here in Miami. We want to see the supply of HPV vaccines also made available and also affordable in countries that have a higher burden of cervical cancer.”

This article is from a reporting partnership that includes NPR, WLRN and KHN.

It all changed on a Saturday night in New York City in 2016. Jacquelyn Revere was 29 years old, and headed out for the evening to attend a friend’s comedy show.

She was still 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 back 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 local church. A slim, regal, self-declared “health nut,” Hindmon was now forgetting to pay bills and couldn’t remember who she was talking to on the phone. This was just a few years after Hindmon herself had moved in with her own mother, Joyce Hindmon, Revere’s grandmother, after the matriarch had been diagnosed with Alzheimer’s.

“My mom was taking care of her mom, who had Alzheimer’s, [and] not telling anybody how hard it was or that she needed help, or that it was completely stressing her out,” Revere says.

“And then it became about me coming home to be in a house with three generations of trauma, and working my way through that … while also being afraid and young and scared and not knowing what to do.”

It would take nearly a year before they got the diagnosis that confirmed what Revere already suspected: Her mother had Alzheimer’s, too. Barely 10 years since Revere left home, she found herself moving back in with her mom and her grandmother — this time as their full-time caregiver.

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

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 says.

Trying to get them to 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 says.

Revere even 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 401k.’ And then I would tell my story, and people would be looking at me like … a charity case, or like my problem is unsolvable. … If anything, I left and I just felt worse.”

But these days Revere no longer feels so alone. In fact, she’s a celebrity of sorts on TikTok, at least among the hundreds of thousands of people who post about dementia and the difficulties of caring for a loved one with the disease.

Over the past few years, Revere’s account, @MomofMyMom, has become wildly popular, with more than 650,000 followers. Many of her most ardent fans have told her that they feel like they personally know her and her mom. Revere has both found a supportive community, and helped build one.

Caregivers for people with dementia have flocked to social media, but TikTok has been an especially helpful platform. Content with the hashtag “dementia” has already 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 actually do that.

The “unmet need”

Alzheimer’s disease is the most common form of dementia, but other forms include vascular dementia, mixed dementia, dementia with Lewy bodies, and frontotemporal dementia, according to the CDC. Nearly all forms of dementia get worse 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 family or friends suffering from Alzheimer’s disease or other dementias, according to the CDC. About two-thirds of these caregivers are women.

“Here in the United States, unfortunately, there is not a very strong system of paid support for people with dementia,” says 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 having to quit their jobs. They often now find themselves financially vulnerable and “extremely isolated,” says Portacolone. “So like Jacquelyn [Revere], the unpaid caregiver of her mother for six years, they are left to their own devices.”

Another expert, Teepa Snow, agrees that too many caregivers are struggling. Snow is an occupational therapist in North Carolina, and runs a company offering training for caregivers of people with Alzheimer’s and related dementias. “We know that there are so many younger…people out there dealing with one form of brain change or another in their life, and they’re left hanging,” she says.

If Revere is the older sister everyone on dementia TikTok wishes they had, then Snow is their patron saint. Her own how-to videos about practical, compassionate caregiving rack up millions of views. “TikTok is where people are expressing an unmet need,” she says.

Because there’s no cure for Alzheimer’s or dementia, the medical community often treats dementia the way previous generations of practitioners treated cancer — like “a big black box,” Snow says. 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?’ “

And while cancer is still a devastating diagnosis to receive, the medical community is more likely to respond by creating “a therapeutic alliance with the patient and the family,” says Portacolone, the UCSF professor.

But families of Alzheimer’s patients often report feeling like the medical system simply hands them an Alzheimer’s diagnosis, tells them there’s no cure, and essentially shows them the door. “[They’ll say] ‘You know, there’s really not a lot we can do,'” Snow explains. ” ‘You could read this book about the origin [of dementia.]’ It’s like, the last thing I need is another book to read.”

What family members need from the medical system, Snow says, 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 diet, sleep, exercise and lifestyle.

All too often, however, caregivers are left to muddle through and figure out the complex tasks of keeping a patient safe. ‘That’s pretty lonely,” Snow says. “And that’s so common. And at this point in time, if we had five families dealing with dementia, four out of five would fall apart before the disease was ended. And so that person who’s just chosen to be the primary [caregiver], they’re all alone. They’re truly all alone.”

Caregivers for people with dementia have been reaching out to one another for years, holding local in-person support groups or joining mega-groups on Facebook. There’s also no shortage of websites or books about the disease and the burdens of caregiving.

But the COVID pandemic disrupted or closed down many of those supports, such as in-person groups, or the adult daycare center that Revere’s mom had been attending five days a week. During lockdown, Revere noticed her mom’s condition started deteriorating. Desperate to keep her stimulated, and to find some kind of social connection for herself, Revere did what so many others did during COVID: She got on TikTok.

A single TikTok post of Snow’s can rack up millions of views. That’s because dementia TikTok, she says, is where “people are expressing an unmet need.”

Using TikTok feels like being submerged in an infinite torrent of videos — most about a minute long. But the short video format has attracted caregivers, who find they can document and share the vivid, daily moments of their homebound worlds in ways that would be less visceral on more text- or photo-centric platforms.

‘How many of us are on here?’

Just as you can watch videos showing World Cup highlights, you can also watch a woman’s “day in the life” video of caring for her husband with early-onset Alzheimer’s.

Or, perhaps, watching 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.”

Giving someone with dementia a bath can be difficult, or 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 physically fight their caregiver.

But Revere has created a soothing and predictable routine for her mother Lynn. At the time of this video, Lynn Hindmon is 63, and it’s about five years after her Alzheimer’s diagnosis. She’s not speaking much.

But in this video, Lynn Hindmon is still gorgeous: tall and regal, with great cheekbones. She still loves to pick out her own clothes, and on this day she’s wearing neon blue leggings and a purple beanie hat. She’s put on gold hoops and pink lipstick.

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

“We’re going to get you some new lipstick. All right, let’s start.” 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: Hindmon is dressed again, and mother and daughter are celebrating with a dance party in the bathroom.

“We dance and we dance and we dance,” Revere narrates. “And when we’re done, she gets a gift.” At last, Revere brings out the promised gift: a sleek black tube of lipstick.

“I have a present,” Revere tells her mom. Hindmon beams, but struggles to open the cap. “Here you go, it’s open,” Revere reassures her. “I opened it for you.”

Revere could not believe this video, of their regular bath routine, 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.”

It was then that Revere realized she was no longer so alone. All the burdens of caregiving — the house maintenance, the medical bills and insurance paperwork — were still very real. But she knew others were out there, struggling with the same chores and challenges. It was because of her TikTok channel, and the community it was helping her tap into. 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.”

TikTokers responded from as far away as South Africa. Revere’s following soared from just a couple 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 her gentle and even joyful tricks for getting through bath time. But they also listened to Revere’s candid confessions and watched her struggle through moments of total exhaustion.

“Ya’ll, I have never been so emotionally drained in my life,” she shared in one video from February of last year. “Caregiving eats your soul. It kills your spirit. It’s constant mourning for years. … And it’s beautiful. And it’s said. Some days you just have to take it breath by breath.”

The ethical issue: Should we be showing dementia patients like this?

But the intimate, unvarnished depictions of dementia on TikTok dementia also raise unavoidable ethical issues involving privacy, dignity and consent. Because now the internet is littered with videos of adults who, for the most part, haven’t given conscious consent to their most vulnerable moments being shared with millions of strangers.

In one TikTok, a granddaughter chronicles her grandmother’s aggression, filming as the elderly woman chases her through the house, fists swinging wildly. Other accounts film the verbal abuse that caregivers can experience, or show Alzheimer’s patients in their most vulnerable moments: a distraught woman standing in her living room in a thin nightgown, pleading for her long-dead parents to come pick her up.

Beth Kallmyer, the 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 wit’s end, with no resources,” she says.

“If I were talking to a family member … considering doing this,” Kallmyer says, “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 and maintains their self-respect?”

Public posts can potentially violate dignity in various ways, she explains. “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. That’s about real … respect for the person. And I’m not sure that’s the best way to go about using TikTok.”

Some accounts have tried to directly address the issue of consent. The @TheKathyProject, for example, was created by sisters Kathy and Jean Collins to document the impacts and evolution of Kathy’s early-onset dementia diagnosis. In the early posts from 2020, Kathy’s symptoms are still fairly mild, and she’s clearly an eager participant in making and sharing the videos with the TikTok community.

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

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

But Hindmon doesn’t want to let the mouthwash go. As caregivers know, Revere now has to keep this from escalating into a big conflict. “May I have it please? Please?” she asks her mom, who eventually relents and hands it over.

“Thank you so much, and I’m going to exchange it for something that tastes even better, all right?” Revere gets her mom a popsicle.

But some of the comments on that post were cruel, calling her mom an alcoholic, or saying 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 says it’s still a good example of “redirecting” away from a risk — something other caregivers would understand.

Life after caregiving

On March 9, Jacquelyn Revere posted another video on TikTok.

“Hey ya’ll, I just wanted to come in and tell ya’ll that, that Mommy passed. She passed on Sunday night. … And it was, it was a really hard experience. And that’s really all I have for now. So lift us up in prayer. Send us your condolences. But Mommy is dancing up in heaven right now.”

Lynn Hindmon had collapsed suddenly at home on the evening of March 6. She died of cardiac arrest at the age of 65. On Tik Tok, the messages of surprise and condolence poured in.

“There were people who tuned in … to literally just watch Mommy eat in the morning, and then whatever we did at lunch time,” Revere says. “And people became a part of our family. People cried. People have been so touched by this story and have mourned my mom in a way that I never would have expected.”

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

“It’s been the least lonely I’ve ever been throughout this experience actually,” she says. “It’s not just my lonely journey anymore. Now it’s everyone’s.

Revere has continued to post on @MomofMyMom. Recently she’s been posting about her grief. In videos, she talks 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 all the time in the world. She can go on dates. She can take her dog, Dewey, to the dog park again, let him lean out the open window in the car. Go out for a pedicure or drive by the ocean. But it’s been hard to let herself do these things, she tells her followers. Because what they mean is that her mom is gone.

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, especially the ones who don’t have huge followings, or who don’t get thousands of comments about what a good job they’re doing.

“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.”

Scientists have demonstrated a new way to study conditions like autism spectrum disorder, ADHD, and schizophrenia.

The approach involves transplanting a cluster of living human brain cells from a dish in the lab to the brain of a newborn rat, a team from Stanford University reports in the journal Nature.

The cluster, known as a brain organoid, then continues to develop in ways that mimic a human brain and may allow scientists to see what goes wrong in a range of neuropsychiatric disorders.

“It’s definitely a step forward,” says Paola Arlotta, a prominent brain organoid researcher at Harvard University who was not involved in the study. “The ultimate goal of this work is to begin to understand features of complex diseases like schizophrenia, autism spectrum disorder, bipolar disorder.”

But the advance is likely to make some people uneasy, says bioethicist Insoo Hyun, director of life sciences at the Museum of Science in Boston and an affiliate of the Harvard Medical School Center for Bioethics.

“There is a tendency for people to assume that when you transfer the biomaterials from one species into another, you transfer the essence of that animal into the other,” Hyun says, adding that even the most advanced brain organoids are still very rudimentary versions of a human brain.

Clearing a scientific obstacle

The success in transplanting human brain organoids into a living animal appears to remove a major barrier to using them as models of human disease. It also represents the culmination of seven years of work overseen by Dr. Sergiu Pasca, a professor of psychiatry and behavioral sciences at Stanford.

Human brain organoids are made from pluripotent stem cells, which can be coaxed into becoming various types of brain cells. These cells are grown in a rotating container known as a bioreactor, which allows the cells to spontaneously form brain-like spheres about the size of a small pea.

But after a few months, the lab-grown organoids stop developing, says Pasca, whose lab at Stanford devised the transplant technique. Individual neurons in the cluster remain relatively small, he says, and make relatively few connections.

“No matter how long we keep them in a dish, they still do not become as complex as human neurons would be in an actual human brain,” Pasca says. That may be one reason organoids have yet to reveal much about the origins of complex neuropsychiatric disorders, he says.

So Pasca’s team set out to find an environment for the organoids that would allow them to continue growing and maturing. They found one in the brains of newborn rats.

“We discovered that the [organoid] grows, over the span of a few months, about nine times in volume,” Pasca says. “In the end it covers roughly about a third of a rat’s hemisphere.”

The transplanted cells don’t seem to cause problems for the rats, who behave normally as they grow, Pasca says.

“The rat tissue is just pushed aside,” he says. “But now you also have a group of human cells that are integrating into the circuitry.”

The human cells begin to make connections with rat cells. Meanwhile, the rat’s blood vessels begin to supply the human cells with oxygen and nutrients.

A link to the senses

Pasca’s team placed each organoid in an area of the rat brain that processes sensory information. After a few months, the team did an experiment that suggested the human cells were reacting to whatever the rat was sensing.

“When you stimulate the whiskers of the rat, the majority of human neurons are engaged in an electrical activity that follows that stimulation,” Pasca says.

Another experiment suggests the human cells could even influence a rat’s behavior.

The team trained rats to associate stimulation of their human cells with a reward – a drink of water. Eventually, the rats began to seek water whenever the human cells were stimulated.

In a final experiment, Pasca’s team set out to show how transplanted organoids could help identify the brain changes associated with a specific human disorder. They chose Timothy Syndrome, a very rare genetic disorder that affects brain development in ways that can cause symptoms of autism spectrum disorder.

The team compared organoids made from the stem cells of healthy people with organoids made from the stem cells of patients with the syndrome. In the lab, the cell clusters looked the same.

“But once we transplanted and we looked 250 days later, we discovered that while control cells grew dramatically, patient cells failed to do so,” Pasca says.

A better model, with ethical concerns

The experiments show that Pasca’s team has developed a better model for studying human brain disorders, Arlotta says.

The key seems to be providing the transplanted organoids with sensory information that they don’t get growing in a dish, she says, noting that an infant’s brain needs this sort of stimulation to develop normally.

“It’s the stuff that we get after we are born,” she says, “especially when we begin to experience the world and hear sound, see light, and so on.”

But as brain organoids become more like actual human brains, scientists will have to consider the ethical and societal implications of this research, Arlotta says.

“We need to be able to watch it, consider it, discuss it and stop it if we think we think one day we are at the point where we shouldn’t progress,” she says. “I think we are far, far away from that point right now.”

Even the most advanced brain organoids have nothing even remotely like the capabilities of a human brain, says Hyun, who posted a video conversation he had with Pasca to coincide with the publication of the new study.

Yet many ethical discussions have focused on the possibility that an organoid could attain human-like consciousness.

“I think that’s a mistake,” Hyun says. “We don’t exactly know what we mean by ‘human-like consciousness,’ and the nearer issue, the more important issue, is the well-being of the animals used in the research.”

He says that wasn’t a problem in the Pasca lab’s experiments because the organoids didn’t seem to harm the animals or change their behavior.

If human brain organoids are grown in larger, more complex animal brains, Hyun says, the cell clusters might develop in ways that cause the animals to suffer.

“What I’m concerned about,” he says, “is what’s next.”

The findings of a big European study published in the New England Journal of Medicine this week seemed to cast doubt on just how beneficial a colonoscopy is in preventing colorectal cancer, which is a leading cause of cancer deaths in the U.S. The results have generated a lot of controversy and buzzy headlines in the popular press — such as “Screening Procedure Fails to Prevent Colon Cancer Deaths in Large Study.”

But that’s not the whole story.

A colonoscopy is a widely recommended tool for cancer screening that involves putting a scope into the colon to look for potentially cancerous growths, called polyps, and cutting them out. Sometimes these slow-growing polyps — or adenomas — would have turned into cancer, so by looking periodically and removing any polyps, the procedure serves as both a screening tool for cancer and an intervention to prevent a tumor from developing in the first place.

Research going back more than a decade has shown that colonoscopies can save lives; A 2018 study from Kaiser Permanente, for example, found a 67% reduction in cancer deaths among people who got a screening colonoscopy.

In contrast, the topline findings of this week’s NEJM study point to a mere 18% reduction in colorectal cancer among thousands of men and women in Europe who were ‘invited’ to get a colonoscopy. And, as some media reports pointed out, the reduction in deaths was too small to be considered statistically significant. Sounds pretty disappointing, right?

A hitch in the study

But here’s the bigger picture: It turns out that more than half of the research participants who were ‘invited’ to get a colonoscopy never showed up for the procedure.

“A colonoscopy will only work if a patient gets one,” says Bret Petersen, a gastroenterologist at Mayo Clinic and president of the American Society for Gastrointestinal Endoscopy, a leading group of GI doctors. Petersen says it’s important to focus on the outcomes of the people who actually underwent the procedure, which was about 42% of participants who all lived in European countries, including Norway and Poland.

Among this group — people who actually got a screening colonoscopy — the risk of developing colon cancer decreased by about 31%. “And deaths were importantly decreased by a significant proportion — about 50%,” Petersen says. He pushes back against the suggestion that the study published this week calls into question the effectiveness of colonoscopies. “To the contrary, I think we have no data from this study to suggest it’s less valuable,” Petersen says. “Based on available studies today, colonoscopy is still the gold standard in detecting and preventing colorectal cancer,” he says. Petersen’s group, ASGE, released a statement that doubles down on the assertion that a colonoscopy “is still the best and most proven way for patients to be screened for colorectal cancer.”

American Cancer Society: ‘This result points to the value of continued screening’

The American Cancer Society has weighed in on the study, too, also pointing to the high number of participants who didn’t get the procedure. “It’s hard to know the value of a screening test when the majority of people in the study didn’t get it done,” says Dr. William Dahut, Chief Scientific Officer at ACS. He highlights the 31% reduction in risk among those who were screened.

“This result points to the value of continued screening,” Dahut says. The ACS also says it’s important to consider that participants in the study were screened sometime between 2009 to 2014, so some got their colonoscopy as recently as 8 years ago. “The time from polyps to cancer to mortality is almost always greater than this — so a much longer follow-up is needed,” an ACS statement concludes. Over time, the reduction in cancer or deaths could be greater.

It’s not likely that the controversy created by this study will lead to changes in U.S. screening recommendations. “Preventive cancer screenings are the best and most trusted way to save lives,” says Karen Knudsen, CEO of the American Cancer Society. The ACS recommends colorectal cancer screening for adults 45 and older. “There’s no reason to change that direction,” says Knudsen.

Some doctors have been quick to point out that the methods used by endoscopists (doctors performing the procedure) have improved, compared to 2009 when the European study began.

“The detection rate for polyps is much higher than it was 10 to 15 years ago,” says Douglas Corley, a research scientist and gastroenterologist at Kaiser Permanente. He says the equipment is better and the preparation methods have also improved (patients are required to fast and drink a specially formulated laxative drink to help clear out the GI tract ahead of the procedure). In addition, “the physician’s skill at detecting and removing polyps is better,” Corley says. So, if a study were beginning now, “the benefit that we would expect to find now would be higher.”

Differences between the U.S. and Europe

In addition, colonoscopies are not nearly as common in the European countries where the study was performed, and Bret Petersen says some of the doctors performing the tests did not identify the number of polyps that would be considered an acceptable rate in the U.S. “Nearly 30% of the endoscopists who were included in the NordICC trial did not meet the adenoma detection rate,” Petersen says. He says this calls into question whether they were actually “just missing some of the lesions that might have otherwise been detected and thereby removed.”

The lead author of the study says he’s aware of all the criticism of his paper. But he pushes back against the idea that endoscopists didn’t find the expected levels of polyps. “In the two countries that contributed the highest number of participants, which is Norway and Poland, the detection rate, which is the quality metric for finding polyps, was 30%, which is well above the current threshold for good quality,” says Dr. Michael Bretthauer of the University of Oslo in Norway. The detection rate was much lower in Sweden, which contributed fewer participants to the study, because, he says, not as many people in Sweden have polyps. “So I don’t think that that argument is valid.”

Bretthauer says the paper may be getting so much attention because it challenges commonly held assumptions in the U.S. about just how protective colonoscopies can be. “I think our findings suggest that colonoscopy is not the magic bullet against colorectal cancer,” Bretthauer says. But, he notes that, with up to a 50% reduction in mortality risk, that’s still more beneficial than almost any other cancer screening tool.

Another challenge of the new study from Europe is that it wasn’t designed to answer the questions that a lot of people have when they try to evaluate screening options. “There are different methods for colon cancer screening,” Kaiser Permanente’s Corley explains. Because the European researchers only assessed colonoscopies, their study doesn’t offer any direct comparisons with the increasingly popular alternative to once a decade colonoscopy: stool-based home tests that are given more frequently.

Alternative screening tests for colon cancer

The U.S. Preventive Services task force recommends any of several different types of colorectal screening methods, including colonoscopy, a sigmoidoscopy (a less invasive scoping to evaluate part of the colon) or stool-based tests, typically taken at home and mailed back to a lab, that look for blood or abnormal cells in stool samples.

“It’s not clear that any one of these methods is better than another at decreasing deaths from colon cancer,” Corley says.

A fecal immunochemical test, called FIT, can detect small amounts of blood in the stool, and is typically done annually. Another option is a combination test — such as Cologuard –– which can detect both blood and DNA changes that may come from a cancerous or precancerous polyp in the stool. People who choose this option are typically advised to do the test every three years.

Patients at Kaiser Permanente opt for the FIT tests more commonly. Sometimes, the biggest hurdle is remembering to take the test, so Corley says at Kaiser they mail the stool-based tests to patients and then keep contacting patients, until tests are sent back.

Each screening approach “has its pluses and minuses,” Corley says. If the stool sample test is positive, then a colonoscopy will likely be recommended to get a better look and remove any polyps. Colonoscopies do carry small risks, including the risk of a perforation or tear in colon, bleeding at the site of a biopsy (if the doctor removes a polyp or takes a biopsy), and potential side-effects from sedation during the procedure.

Typically, “If you are at higher risk for colon cancer, such as you’ve had close family members who’ve had colon cancer, especially if they’re at a young age, then it’s recommended that you have a colonoscopy,” Corley says. If you’re not at high risk, he says, you should pick the test that you’ll be able to complete, whether that’s a colonoscopy or one of the less invasive and more frequent stool-based tests.

Regardless of which method of colon cancer screening you choose, Corley says, the important thing to follow through and get screened.

You can find Allison Aubrey via Twitter @AubreyNPR.

A dish of living brain cells has learned to play the 1970s arcade game Pong.

About 800,000 cells linked to a computer gradually learned to sense the position of the game’s electronic ball and control a virtual paddle, a team reports in the journal Neuron.

The novel achievement is part of an effort to understand how the brain learns, and how to make computers more intelligent.

“We’ve made huge strides with silicon computing, but they’re still rigid and inflexible,” says Brett Kagan, an author of the study and chief scientific officer at Cortical Labs in Melbourne, Australia. “That’s something we don’t see with biology.”

For example, both computers and people can learn to make a cup of tea, Kagan says. But people are able to generalize what they’ve learned in a way a computer can’t.

“You might have never been to someone else’s house, but with a bit of rummaging and searching you can probably make a decent cup of tea as long as I’ve got the ingredients,” he says. But even a very powerful computer would struggle to carry out that task in an unfamiliar environment.

So Cortical Labs has been trying to understand how living brain cells acquire this sort of intelligence. And Kagan says the Pong experiment was a way for the company to answer a key question about how a network of brain cells learns to change its behavior:

“If we allow these cells to know the outcome of their actions, will they actually be able to change in some sort of goal-directed way,” Kagan says.

To find out, the scientists used a system they’ve developed called DishBrain.

A layer of living neurons is grown on a special silicon chip at the bottom of a thumb-size dish filled with nutrients. The chip, which is linked to a computer, can both detect electrical signals produced by the neurons, and deliver electrical signals to them.

To test the learning ability of the cells, the computer generated a game of Pong, a two-dimensional version of table tennis that gained a cult following as one of the first and most basic video games.

Pong is played on a video screen. A black rectangle defines the table, and a white cursor represents each player’s paddle, which can be moved up or down to intercept a white ball.

In the simplified version used in the experiment, there was a single paddle on the left side of the virtual table, and the ball would carom off the other sides until it evaded the paddle.

To allow the brain cells to play the game, the computer sent signals to them indicating where the bouncing ball was. At the same time, it began monitoring information coming from the cells in the form of electrical pulses.

“We took that information and we allowed it to influence this Pong game that they were playing,” Kagan says. “So they could move the paddle around.”

At first, the cells didn’t understand the signals coming from the computer, or know what signals to send the other direction. They also had no reason to play the game.

So the scientists tried to motivate the cells using electrical stimulation: a nicely organized burst of electrical activity if they got it right. When they got it wrong, the result was a chaotic stream of white noise.

“If they hit the ball, we gave them something predictable,” Kagan says. “When they missed it, they got something that was totally unpredictable.”

The strategy was based on the Free Energy Principle, which states that brain cells want to be able to predict what’s going on in their environment. So they would choose predictable stimulation over unpredictable stimulation.

The approach worked. Cells began to learn to generate patterns of electrical activity that would move the paddle in front of the ball, and gradually rallies got longer.

The brain cells never got that good at Pong. But interestingly, human brain cells seemed to achieve a slightly higher level of play than mouse brain cells, Kagan says.

And the level of play was remarkable, considering that each network contained fewer cells than the brain of a cockroach, Kagan says.

“If you could see a cockroach playing a game of Pong and it was able to hit the ball twice as often as it was missing it, you would be pretty impressed with that cockroach,” he says.

The results hint at a future in which biology helps computers become more intelligent by changing the way that they learn, Kagan says.

But that future is probably still a long way off, says Steve M. Potter, an adjunct associate professor at Georgia Tech.

“The idea of a computer that has some living components is exciting and it’s starting to become a reality,” he says. “However, the kinds of learning that these things can accomplish is quite rudimentary right now.”

Even so, Potter says the system that allowed cells to learn Pong could be a great tool for doing research.

“This is sort of a semi-living animal model that one can use to study all sorts of mechanisms in the nervous system, not just learning,” he says.

A few brave professionals have publicly shared their journeys with bipolar disorder — including psychologist Kay Redfield Jamison, physician Justin Bullock and entrepreneur Andy Dunn. Recently, while serving as California’s Acting Surgeon General, I chose to join their ranks.

To help dispel stigma and to spread hope, I shared my own long path to diagnosis and recovery in a National Alliance on Mental Illness conference keynote speech, social media messages and a personal essay in the LA Times.

Despite my early fears that having bipolar disorder would forever derail my path, I shared that I now attribute much of my professional and personal success to the lessons I took from my mental health journey.

This disclosure reached millions, and has brought me the gift of dialogue and deep kinship with hundreds of people touched by mental illness who’ve reached out to me — many of whose voices sound like mine from years past.

Many wrote that they have never seen someone in a high-profile public role with a serious mental illness speak out. Some, in the midst of the hardest parts of their own journeys, wrote that my words were “live-saving” and had helped them feel less alone, ashamed and hopeless.

I’ve been in tears at the vulnerability people have shown me and their raw, all too recognizable truths.

For instance, one parent described their teenage daughter’s struggles with bipolar disorder:

“It has been a difficult journey for us and her,” they wrote. “Thank you… for making us feel a little less alone and giving us hope that [our daughter] has a beautiful life ahead!”

My most fervent hope — and the reason I chose to “come out” — had been precisely to reach those still finding their paths to recovery. To help them know that there is a way forward. That a difficult diagnosis or a long period of struggle does not preclude living out their dreams — to hold out hope that with the right treatments, a full life is possible.

The stakes couldn’t be higher. More than one in five American adults lives with a mental health condition — and about one in twenty has a serious mental illness like bipolar disorder — with rates soaring during the pandemic. And it can take years to receive the right diagnosis and find the right treatments that return us to our full functioning and potential. While suffering, we’re at increased risk for dying 10 to 20 years earlier, including by suicide or from chronic conditions like heart disease.

Stigma and its cousin, internalized shame, end up compounding the many difficulties on the road to recovery, leaving us to believe that we are undeserving of help and alone in our struggles — and leading to discrimination in the workplace and in opportunities and access to care. Many find the experiences of stigma and discrimination to be more painful than mental illness itself. In fact, in part because of stigma, more than half of adults with mental illness are not in treatment.

Sharing our stories allows us to chip away at this stigma and spread an understanding of the commonalities in our experiences — that with treatment, positive outcomes are not only possible, but likely.

But the messages I’ve received have underscored just how much further we have to go in achieving equal access and acceptance for mental health treatment as for physical health.

One business professional of Indian origin wrote of the stigma bordering on taboo that limits access to treatment in our culture.

“Growing up in India, speaking about mental health was traumatic, and I’ve seen family members in significant pain who were never able to ask for or seek help,” she wrote [emphasis added]. “My mother, now deceased, would have [benefited] had she known she could have asked for help, been treated, and lived a fulfilling life.”

Like former me, countless others today are not free to live as their full selves free from discrimination and unfounded judgment blemishing their careers.

“I’ve been told by bosses and others that I don’t have potential because of what I struggle with, and I’ve ended up internalizing it,” wrote one woman.

I also heard from scores of health professionals, who are particularly prone to hide their diagnoses and not seek treatment for them.

Stigma is embedded directly in regulatory processes in medicine like those of state licensing boards, which can take punitive, paternalistic approaches to monitoring clinicians with mental health conditions, even when well-controlled.

A mental health professional wrote about needing to hide their bipolar diagnosis during their training. “I daily hear people look down and shame those who have this disorder in [the] field, even coworkers, people who I learn from in my clinical training,” they wrote. “I hope that one day I can fully convince myself that my success as a clinician will not be reduced to this disorder

A medical student living with bipolar disorder wrote: “I have felt silenced and often times like I don’t belong in this field. You have reminded me that I do belong here and that my diagnosis will not prevent me from being successful as a doctor.”

In the wake of these outpourings, I have never been more convinced that to dispel mental health stigma, professionals who feel comfortable need to speak our truths — to spread the understanding that mental health conditions, especially serious ones, are treatable. This is essential to help change the prevailing stereotypes and often pejorative cultural associations tied to mental illness, and to enhance access to care.

Public opinion of mental health conditions is still largely anchored in extreme images of people at their most unwell. When we make space to understand varied individual mental health journeys, including recovery, we embrace nuance and context.

When we join our disparate voices together and share our stories — of illness and wellness — we can and will dispel stigma, shame, and stereotypes, and achieve lasting change in the limiting and incomplete ways many currently view those of us with mental illness.

In my own life, I’ve come to see my mental health journey as driving my superpowers — as a doctor, leader, and loved one. As my son’s namesake, Rumi, once wrote: “The wound is the place where the light enters you.”

My journey has brought me deep self-insight and shown me my own capacity for strength and vulnerability. It’s given me strong motivation to implement the boundaries and care strategies it takes to stay well, as well as an empathic ability to support others through their most vulnerable moments.

Many readers wrote that hearing my perspectives empowered them, some for the first time, to reinterpret their mental health experiences as enabling their most unique assets.

“As someone living with [complex post-traumatic stress disorder], I… never before thought it could be my superpower,” wrote one reader.

“Now, after almost a decade, [I] can see clearly as you do that bipolar did not fundamentally change me or realign my understanding of self, but it has been one of the greatest gifts I have ever been given,” wrote another.

Out of everything, I’m most grateful that my disclosure has given me the chance to forge deep bonds across a global community and to join a movement — with a shared conviction to reclaim our narratives.

Working together, I have real hope that we will end mental health stigma and discrimination, and usher in better access to treatment within our lifetimes. So that our children can live in a world that honors and enables their fullest potential.

Dr. Devika Bhushan is an equity-focused pediatrician and public health professional who has served as California’s Acting Surgeon General. She’s an Indian-American immigrant and a parent. She’s on Twitter and Instagram as @DrDevikaB.

Multinational digital health firm Babylon said it plans to sell its independent physician association business in California to focus on digital-first contracts.

Meritage Medical Network is a group of about 1,800 doctors who provide in-person care across six counties in northern and central California. Babylon said divesting from the network will allow the firm to focus on its core business model, its digital-first, value-based care contracts.

Proceeds from the sale will be enough to fund the company through profitability, Babylon said. When Babylon released its second-quarter earnings in August, it said it was still evaluating how long it would take to reach profitability based on both cash flow and adjusted EBITDA, but the company was targeting no later than 2025.

THE LARGER TREND

In addition to the sale of Meritage Medical Network, Babylon said its previously announced reverse share split will take place during the fourth quarter this year. 

Last month, the company said it had received notice from the New York Stock Exchange that it was not in compliance with a rule that required companies to maintain an average closing share price of at least $1 over 30 consecutive days. The split aims to boost the stock price to prevent Babylon from being delisted. 

The company, which started in the UK, also said it plans to move to U.S. domestic reporting status with the Securities and Exchange Commission in 2023. The company recently dialed back contracts with NHS Trusts in its home market, while it noted its U.S. value-based care members grew by 220% year-over-year in its Q2 results. 

However, Babylon also recently hired Andrew Hine as vice president of the go-to-market team for Asia, Europe, the Middle East and Africa. Fine will manage Babylon’s contracts and partnerships and work to increase its offerings and services in those regions, the company said.

ON THE RECORD

“The sale of our IPA business and streamlining of our reporting and governance processes will result in a more focused business, simpler structure and stronger balance sheet,” Ali Parsa, Babylon’s founder and CEO, said in a statement.

American VR digital therapeutic company MyndVR and European company Oroi announced a strategic partnership to expand MyndVR’s catalog of cognitive, physical and occupational therapies using Oroi content. 

Oroi is a VR content platform aimed at improving the wellbeing and cognitive stimulation of seniors. The company currently works in Spain, France, Germany and the U.K.

With the partnership, MyndVR will offer Oroi Cognitive, which includes several exercises and games simulating daily life situations like orienting oneself within a city, shopping in a market, getting dressed and cleaning a room.

Additionally, MyndVR will utilize Oroi Fit, a VR exercise app that combines physical exercise with immersive content where users can row down a river or bike in the countryside.

“What we’re adding with Oroi is an entirely new portfolio of brain games and exercises, and physical and cognitive exercises. So they’ve created some amazing content for seniors in Europe that we have translated now into American English, etc. And that content now will be riding on the MyndVR network in the U.S.,” Chris Brickler, CEO and cofounder of MyndVR, told MobiHealthNews.

“They kind of have the same cultural mindset that we do around the love/care/compassion model of providing this content to our seniors. And so the cultural fit is just really, really great.

“Then I think the blending of some of the avant-garde content that they’ve been preparing for seniors in Europe that are really facing some of the same challenges that our seniors face here, obviously. It’s just a great way for us to expand the content that we are able to provide on the network.”

THE LARGER TREND

Senior-focused MyndVR has grown in the past several years, announcing partnerships between the company and other organizations. 

MyndVR formed a strategic partnership with HTC VIVE, a virtual reality platform for businesses and consumers. HTC VIVE’s VR accelerator, VIVE X, and MyndVR teamed up to launch MyndVR 2.0, the second version of the company’s signature VR product for senior-care communities.

In March the company announced the launch of MyndConnect, an intergenerational communication platform for older adults intended to connect family members virtually and connect friends in a metaverse via HTC’s VIVE Flow immersive glasses.