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Teletherapy Aimed to Make Mental Health Care More Inclusive. The Data Show a Different Story

For years, teletherapy has been pitched as the next frontier in mental-health care. Unlike medical disciplines requiring a more hands-on approach—say, physical therapy or surgery—talk therapy has long seemed a natural and effective fit for telehealth. And by taking appointments off the therapist’s couch and into patients’ homes via their devices, advocates argued, telehealth could make counseling more accessible and convenient for everyone, with particular benefits for those who lived in health care deserts or who couldn’t regularly drive back and forth to see a clinician. The hope was that virtual therapy could help democratize a system that allowed almost 20% of white Americans to receive mental-health care in 2019, but fewer than 10% of people identifying as Black/African American, Hispanic/Latino, Asian or Pacific Islander.

Then, of course, the pandemic hit, sending the U.S. health care system into a panic and shuttering clinics and private practices nationwide. Telehealth, once psychiatry’s up-and-comer, was suddenly its lifeline. With impressive speed, a system built around face-to-face visits shifted almost exclusively online. By May 2020, 85% of the American Psychiatric Association’s (APA) surveyed clinician members said they were conducting the majority of their sessions virtually, up from just 2% prior to the pandemic. It was the perfect pressure test for the promise of virtual mental-health care. If there was ever a time for teletherapy to shine, it was during the pandemic. But the data aren’t so shiny. Telehealth has indisputably improved mental-health care access—but not to such an extent that it delivers on promises of revolutionizing the mental-health system. The same problems that kept many people—particularly those who are lower-income or of color—from seeking care before the pandemic still exist, even with the expansion of telehealth. As a result, mental-health usage in the U.S. hasn’t changed as drastically as many advocates would have liked. In a series of TIME/Harris Poll national surveys conducted this winter and spring, about half of respondents reported using telehealth since the pandemic began, compared with about 25% who said they had beforehand.

But only about 5% said they’d gotten mental-health care for the first time during the COVID-19 crisis. That suggests the expansion of telehealth didn’t bring in an influx of new patients to the mental-health system. Government data show a similar picture: about a quarter of U.S. adults received mental-health care in the winter of 2021, according to the U.S. Centers for Disease Control and Prevention (CDC), up from about 19% in 2019. That’s an improvement, but not an enormous one.

Similarly, a March 2021 study from California’s Kaiser Permanente health system found that telehealth allowed clinicians to conduct 7% more psychiatric visits in spring 2020 than 2019—but most of those were with patients who already had a psychiatric diagnosis. Among people without a pre-existing diagnosis, volume declined by more than 40%, suggesting that virtual appointments were more helpful for people already served by the mental-health system than those outside it. On the opposite U.S. coast, telehealth allowed McLean Hospital, a psychiatric institution near Boston, to increase outpatient volume by about 15%, counting both new and existing patients, but psychiatrist-in-chief Dr. Scott Rauch says there’s “absolutely the recognition that there are some populations,” like certain older adults, “that are having difficulty accessing the technology.”

In fact, despite the increased availability of telehealth, the share of American adults with an unmet mental-health need increased from August 2020 to February 2021, from 9% to almost 12%, according to CDC data. That’s understandable, given elevated levels of anxiety, depression and stress during the pandemic, but it also suggests teletherapy is not a panacea. And that means the harder work is still ahead. There are lots of ways to think about access to care. The most obvious—making it easy for a patient to speak directly with a clinician, either in person or via a device—is only one. There are also financial barriers. A single therapy session can easily top $100 (without insurance) in many parts of the country, and telehealth has done little to change that. Rightly so, argues Dr. Joe Kvedar, a former president of the American Telemedicine Association, since there’s no evidence to suggest virtual therapy is lower quality than face-to-face. Be that as it may, high price tags mean both therapy and teletherapy remain unattainable for many. Another limitation: there are simply not enough therapists to go around. More than 125 million people in the U.S. live in an area with a shortage of mental-health practitioners, according to U.S. Health Resources and Services Administration estimates. Whether they’re seeing patients virtually or in the flesh, there are a finite number of mental-health professionals with a finite number of hours in their days. Rauch, from McLean Hospital, says telehealth can increase appointment capacity somewhat, mainly because patients are less likely to cancel or no-show, but “as long as it requires an hour of clinician time to deliver an hour of clinical service, expanded access won’t be drastically enhanced.” To meet demand, the U.S. needs not only more therapists generally, but also more therapists from diverse backgrounds. A 2020 study concluded that just 10% of U.S. psychiatrists identify as Black, Hispanic, American Indian, Alaska Native, Native Hawaiian or Pacific Islander. That means many patients of color can’t find a therapist whom they trust and with whom they can form a close rapport, a barrier that dissuades many people from getting the help they need or prevents them from reaping the full benefits of therapy, says Dr. Amanda Calhoun, a psychiatry resident at Yale and a fellow on the APA’s Council on Minority Mental Health and Health Disparities.

“There are many patients who want a Black therapist and they can’t get it,” Calhoun says. “If we truly want to reduce the gap [in mental-health care usage] we need to make it a trustworthy system where people feel they can connect with their therapist or psychiatrist.” Patients who do not speak fluent English, or who feel more comfortable using another language, may also struggle to find a therapist with whom they can communicate freely. Increased use of language interpretation could be an essential tool for expanding access, Calhoun says. It seems naive, or at least wildly optimistic, to think telehealth could overcome some of these entrenched structural issues. And in some cases, virtual care actually worsens disparities. Some people don’t have a reliable Internet connection or a smart device, for example. About 7% of American adults don’t use the Internet at all, according to Pew Research Center, and those without advanced education and people of color—i.e., those already often underserved by the mental-health system—are least likely to be “digitally literate,” according to a 2020 Health Affairs article. Further, elderly adults, an estimated 20% of whom have some sort of mental-health condition, may struggle to navigate virtual platforms even if they have quality Internet access. And online platforms aren’t perfect. Some people feel uncomfortable sharing their most intimate thoughts through a screen, and any digital system runs the risk of malfunctioning or being hacked. That recently happened in Finland, when a data breach led thousands of patients’ sensitive appointment notes to land in hackers’ hands. Plus, teletherapy is only convenient if you’re able to step away from work and other responsibilities to conduct the call in a private place. While the pandemic has many white collar workers drowning in time at home, surrounded by devices, that’s far from a universal experience. For essential workers, a disproportionate number of whom are people of color, it may be only slightly easier to steal away for a teletherapy appointment than it would have been to schedule an in-person visit with a clinician. Perversely, teletherapy may be making it easier than ever for people who already had access to mental-health care to get it, while leaving behind the people who arguably need it most.

If teletherapy isn’t doing the trick, the question then becomes how to better serve those still not getting the mental-health care they need. Calhoun says any real solution needs to take a step backward and investigate why many people either cannot or choose not to seek help. For people of color, centuries of neglect and mistreatment by the medical institution are not easily forgotten. In the 1700 and 1800s, influential American doctors coined since-discredited diagnoses like “drapetomania” (psychosis or madness causing an enslaved person to run away) and “negritude” (essentially, the “disease” of not being white). Many contemporary providers aren’t aware of those offensive diagnostic frameworks, Calhoun says, but the cultural legacy of that racism is still widely felt in communities of color. Training more clinicians from underserved backgrounds is the single most impactful way to encourage people of color to get help, Calhoun says. But that process takes time. In the interim, she says, all clinicians need to be educated about psychiatry’s problematic past so they can acknowledge and understand why some patients may not feel comfortable seeking help, and then hopefully address those issues in their own practices. Looking beyond telehealth and focusing on community-based programs—like church-run mental-health groups or the Confess Project, a nationwide initiative that trains barbers to be mental-health advocates—may also help build that trust. Case studies also suggest teletherapy can work well when it’s integrated into the traditional, in-person medical system. For the past decade-plus, Massachusetts has run a program that allows participating primary-care providers to teleconference in a psychiatrist during a child’s checkup, for example. Such programs don’t eliminate mistrust of the medical system, but they can at least make it easier to introduce people to the mental-health system. Mental-health apps—while not appropriate for patients with serious diagnoses, and clearly not an option for those without a smartphone—can also provide a cheap (or even free) stopgap measure for people struggling to find or afford an appointment with a clinician, Rauch says. And in some cases, adds Dr. Adrienne Robertson, a family medicine physician who works with the online medical startup Nurx, through which people can request prescription medicines and diagnostic tests simply by filling out a form, eliminating face-to-face interactions with providers can actually put patients of color at ease, because they can “just [be] a patient like everyone else.”

Policy also plays a role. Nordic countries, like Sweden, have among the most robust and widely used telemedicine programs in the world, boosted by affordable, state-sponsored medical networks. Unlike in the U.S., where insurance limitations and out-of-pocket costs are roadblocks for some patients regardless of platform, many people in Nordic countries have a public option for virtual care. Last year, the Centers for Medicare and Medicaid Services made it easier for Medicare holders to use telehealth services, a policy that allowed more than a quarter of Medicare beneficiaries (and more than 30% of Black and Hispanic beneficiaries) to use telehealth during the fall and summer of 2020, but it’s not clear what will happen after the pandemic ends. Permanent federal action for Medicare and Medicaid holders—many of whom are low-income or elderly adults—could open up therapy to millions of people who can’t currently afford it. And changing federal policies that currently limit clinicians to treating patients located in the state where they are licensed could help even out distribution of the mental-health workforce. All of these fixes are considerably more complex than bringing appointments online; they require rebuilding the system, rather than simply shifting it to a new platform. That work needs to happen sooner rather than later, Calhoun says. Already, according to TIME/Harris Poll data, many people are returning to in-person medical appointments, both psychological and physical. In May, more than half of respondents who’d received mental-health care said they’d had an in-person appointment since the start of the pandemic, up from 37% in February. While some patients and clinicians are sure to stick with teletherapy after the pandemic, much of the system will seemingly revert back to how it was—and without concerted effort, the same problems may persist for years to come.

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‘A Year Full of Emotions.’ What Kids Learned From the COVID-19 Pandemic

Too many young generations have been shaped by the global crises they faced—Depression-era poverty, Cold War nuclear fears. Add to them the COVID generation. The virus itself may typically go easier on kids than it does adults, but the mind of a child is another thing. It’s dependent on certainty, safety, the comfort of routine. Take all of that away—shutter schools, keep grandparents at a distance, cancel summer camps—and kids suffer. But as the following lightly-edited stories from young people show, they also grow and learn, gain maturity and wisdom. The virus has been tough; plenty of kids, it turns out, have been tougher.

Jeremy Liew, 13, Riverside, Conn.

Michelle Toy Liew

The last year made me comfortable with being uncomfortable. I was uncomfortable being singled out for how I look (I am an Asian-American Pacific Islander). A year ago, people looked at me with suspicions as if I had COVID-19 or brought it to my community. I felt embarrassed to be me. I usually use jokes or magic tricks in awkward moments, but people didn’t want to be around me. That made me empathetic to how others feel based on how they look. Learning without the social cues of a classroom was difficult. At in-person school, I took notes when I could see that everyone around me did. During Zoom, I didn’t know what I was supposed to be doing. That made me take risks like asking my English teacher for help or raising my hand first to share my thinking. I learned change happens, pandemic or not. People adapt and become stronger even with uncertainty. I can deal with it too. I am still uncomfortable. But now I am confident. I appreciate who I am. I am grateful for what I have (my education, health, and three annoying sisters). And I believe that people and science can make a difference, maybe with the help of a little magic! Roman Peterson, 14, New York, N.Y.

Courtesy Mary Pflum

The last year has been the year of getting to know COVID too well. Some people think kids don’t get COVID, or that, if they do, it’s no big deal. In our house, it was a big deal. When our school announced it was going to remote learning in March 2020, I thought the pandemic might feel like vacation. But then my mom got COVID. She was really sick. We quarantined in our New York City apartment. My younger brothers and sister and I tried to stay away from her. But a few days after she was diagnosed, I got a fever. Doctors told me I had COVID, too. My fever lasted four weeks. I lost my appetite and got really bad headaches. Researchers at New York Presbyterian/Columbia asked me to be in a year-long study. In the early stages, the study was one of the only ways I could get in-person care. The researchers saw me as many as four times a month. They took my blood and spit and even studied my braces to figure out how long COVID stays on kids’ teeth. I still get “COVID headaches.” But I know I’m lucky. COVID taught me not to take my health or the opportunity to be with people, in person, for granted.

I now have headaches less often. And our eighth grade graduation will be in-person. It will be the first time we’ll be together as a full grade since COVID began. Mira McInnes, 12, Leawood, Kan.

Stephanie McInnes

I struggle with anxiety and depression, and although I was in a good place mentally when the first wave of COVID-19 cases hit in the U.S., the pandemic created a greater challenge for me. Up until March 2020, I was seeing my psychologist in person. COVID changed that almost overnight. Although it was weird at first talking to her through a computer screen, I quickly became used to it. I’ve been able to get the help I need, and I’m grateful for how much she has done for me. In between appointments, though, I needed to find a way to take my mind off things. So, I turned to writing. Over the past year, I’ve spent several hours most days writing short stories, poems, and songs about how I’m feeling and what my hopes for the future are. Staying unfiltered on paper or on screen has helped me validate my struggles with mental health and allows me to be open and honest with myself in a way I haven’t truly been before. Nirav Pandey, 15, Kathmandu, Nepal

Umesh Pandey

2020 was a year too unpleasant to remember, yet too hard to forget. I was expecting something totally normal. Nothing dangerous, nothing out of the blue. Just another ordinary year. However, 2020 was just another pandora’s box, waiting to be opened. The pandemic began taking a toll and I was already disheartened, knowing that things wouldn’t be the same for a very long time. Nothing could go worse, I assumed. I was dead wrong. In December, I felt terribly sick. On the day I reached the hospital, I was grey with fatigue. I stayed for observation and a few check-ups. The results were distressing. In the matter of a few hours, my liver, heart and lungs were struggling to keep up. I was shifted to the ICU. Before I was put into the ventilator, I told my parents that I’ll be back soon, uncertain if I would ever see them again. Over the next four days, my health deteriorated significantly and there was little hope of my survival. In the nick of time, with the right treatment, I made it back to life, after what seemed an eternity. I greatly respect all front line workers.

I was diagnosed with Pediatric Inflammatory Multisystem Syndrome, a rare and dangerous disease discovered in April 2020 associated with COVID-19. The odds of me getting the disease were less than 0.5%. Through this struggle, I have come to realize how precious life is and the hurdles we need to overcome at every step. Isaiah Magala Destin, 10, Charlotte, N.C.

Yven Destin

The COVID pandemic has made me feel a lot of ways—good, sad, weird, but mostly sad. I haven’t seen my old friends in person. I can only FaceTime them on my mini tablet. My best friend Leland finally came to visit me a few weeks ago, which was great. But he was the only one who did all year. Things seem to be getting better with the pandemic. I know President Joe Biden is doing his best to end COVID. At my school, I heard all the teachers got vaccinated! And at school, sometimes you can take your mask off for like 20 minutes while exercising during P.E., which I like. At home, I spend a lot of time playing with my cute twin siblings in and outside our apartment. I also draw a lot and make videos on my tablet, which makes my life better. I feel sad that I don’t get to meet my family in Uganda and Florida. To tell you the truth, if COVID-19 wasn’t real, I would not be that careful about getting sick. I wish that COVID was so weak that it would become like getting chickenpox. Shanaya Pokharna, 12, Memphis, Tenn.

Courtesy Payal Pokharna

I had never imagined that at age 12, I would be witness to something so unusual, something that would become history—a pandemic, something people only hear about in textbooks. Unimaginable, unfathomable, unforgettable is how I describe 2020. This was a year full of emotions. My mother was sick in an isolated room for 20 days. She got COVID-19 when the world was waking up to “just another flu” in early March. My father, who is an infectious disease physician, tirelessly cared for COVID patients in inundated hospitals, navigating the lack of supplies and finally contracting the infection himself. 2020 has matured me by a few years. I learned the virtues of compassion, patience, hard work, selflessness, dedication, gratefulness and passion towards one’s profession and family from my parents and people around me. There are so many things we take for granted—like family and friends—but 2020 has made me realize how important these things are. This whole experience has made me realize that we humans are capable of overcoming any adversities as we all strive to get over this catastrophe.

Abby Rogers, 11, Lahaina, Hawaii

Stan Brody

I can’t believe all that has changed in one year. Like most kids, my school was shut down. Every day the news would report about the virus spreading quickly throughout the world, and it was scary for me because I have reactive airways disease. Due to my condition, my exposure to people outside of my family was limited. While my world became physically smaller, my online world began expanding. To give me something to do, my aunt recommended scientific livestreams, where I could learn from scientists from all over the world. Now, my new “best friends” are explorers who educate me on the importance of climate change, kelp forests, cotton-top tamarins and so much more! The more I’ve learned, the more I’ve wanted to do something to help make the world a better place. I started by trying to become as eco-friendly as possible. I cut down on my single use plastics, ate less meat, and became an avid recycler. I have recently gone back to school two days a week and I’m super excited to be there. However, I was a little concerned as to why there wasn’t a recycling bin in my classroom, but my teacher kindly allowed me to bring one in! Valentina Efendiev, 6, Jackson, N.J.

Courtesy Karen Henriquez

I got a purple skateboard. I also like to roller skate, ride scooters, and ride my bike on my driveway and in the park. I also like to paint and color. I am starting to paint a mermaid canvas and it has so many details. I drew a paw print and a flamingo in my art class. My class was on the computer. Now it’s in my classroom, but hopefully soon it can be in the art room. In the winter I made a big snowman, and we had a big snowball fight. I hit Daddy in the glasses! He was O.K. And I did a chat with my friends and showed them my loose tooth, and they said it was really cool. I used to ride horses but they shut down. My horseback teacher’s mom got sick, so we were meant to be away. I was sad because I couldn’t do gymnastics, swimming, or horseback riding anymore. Now I don’t know how to swim. I want to learn how to do a cartwheel.

As told to TIME via interview Afton Campbell, 12, Surprise, Ariz.

Courtesy Alicia Campbell

I haven’t had COVID-19, but the pandemic still changed my life. Distance learning started in March 2020. Since then, I haven’t gone back to in-person school; I chose to continue online classes because I enjoy spending more time with my mom and baby sister. I’ve missed my teachers and friends, but I can wear pajamas! My dad works at a cancer hospital. As other hospitals were busy treating COVID-19 patients, they transferred cancer patients to his hospital. I saw him less as he worked overtime. Before the pandemic, my family visited my aunt in a memory care facility every week. I loved spending time with her and the other residents. Her facility has banned visitors since March 2020. We FaceTimed, but it wasn’t the same. Then she caught COVID-19. Watching her decline was horrible. She passed on New Year’s Eve, and our family had to hold her funeral virtually. When we needed our family most we couldn’t be together. The pandemic changed my life, but not in entirely bad ways. I’m grateful to realize all the things I took for granted, like how lucky I am to be healthy and to spend time with my family. Milo Ecker, 5, Randolph, N.J.

Tracey Goldberg

I like to have fun at home. My daddy makes movies for work, and we made a movie together. It’s called Puzzled. It’s about me doing a puzzle, but I’m missing a piece. And my little brother Elliot finds the piece! It’s a really good movie. Sometimes I do grown-up workouts with my mommy and daddy, so I’m super strong. I like when my daddy makes hot dogs on the grill outside for dinner. I didn’t go to school for a long time because there was a virus. Now I go to school. I learn science with my friends. I was in a play. I wore a costume and a mask. We wear masks whenever we’re at school. I bring a lot of masks in my backpack because I don’t like when my mask gets wet from spit. As told to TIME via interview Sammy P. Smith, 5, Urbana, Ill.

Courtesy PJ Holder

This past year has been very different for me. Daddy never went on any work trips. I homeschooled all year long. I only got to go into two stores. I read hundreds of books from the library. I went to lots of empty playgrounds. I went on lots of hikes in the woods. I’ve spent all year playing with my little brother. I got to go to a drive-through zoo and see a real camel! I barely got to play with any other kids outside of my family. I am looking forward to getting my vaccine so I can make new friends and go to stores with Mommy and Daddy.

Maria Elena Suarez, 13, Bellaire, Texas

Courtesy Charlotte Aguilar

Becoming an official teenager in the middle of a pandemic was especially hard. I couldn’t tell how much of the angst, isolation, and moodiness I was feeling was because of adolescence and how much was due to very real fears for everyone I love, lockdowns and quarantines, and bad news from around the world. How could I feel sorry for myself when the entire world was experiencing what I was? Every day there were new challenges. First, school was cancelled, then it was “virtual.” No sixth-grade graduation, no goodbyes to my teachers or gift-giving, no signing our yearbooks. No vacation trips. No socializing with my friends. At all. Just faces on my iPad screen. There was so much to be grateful for, though. The time I got to spend with my family especially. How creative we were about birthdays and holidays—most of them socially distanced and masked in parks. I learned to sew masks. I made them for my family and myself and donated many to the seniors’ program in my city. That got me outside my own skin, helping someone else. Two days after the government approved the vaccine for my age group, I rolled up my sleeve and got my first shot. It’s surreal that I’ve lived world history that I can tell my children and grandchildren about. Victoria Hanson, 11, Chadds Ford, Penn.

Courtesy Sophia Hanson

My last year has been full of yummy new treats. While at home during the pandemic, I developed a tasty new hobby—baking. It all started with a major project to bake a six-layer rainbow cake. The rainbow cake looked amazing! There unfortunately were “technical difficulties” with the purple, so it was just five layers. After that, I continued baking cakes because I had a lot of fun. As I got better at baking I made bigger cakes. I taught myself to use a piping bag to decorate my cakes with flowers. I also learned how to make fondant for specialty designs such as animal shapes. The two most important lessons for bakers are to follow the directions in the recipe and to clean up their workspace. This last year has earned me a fancy new title. My new name is “Cake Boss.”

Rory Hu, 11, Cupertino, Calif.

Courtesy Yanlin Wu

Blame the Avengers. They took the Infinity Stones, altered the flow of time, and turned the world upside down. Seriously, 2020 felt so strange that it was as if we had entered a parallel timeline. Everything around me has gone virtual since: virtual school, virtual playdates, and even virtual birthday parties! This “virtual” world made me feel anxious, lonely, and bored at first. Then it hit me that this past year my family has had a chance to spend more time together than ever before. Same with my friends. For example, I had no idea about one of my friend’s artistic skills until we began collaborating on a Zoom whiteboard. Although the real distance was very far, we got much closer virtually. The world is as real as before, if not more so, despite all the virtual activity. The issues around me, such as the California wildfires and Asian hate crimes, are very real even though I learned about them online. The pandemic is not the only battle we are fighting. It’s time to get real and stand up for our future. Pranav Mukhi, 11, South Setauket, New York

Sandeep Mukhi

When I began school remotely in March 2020, I was excited at first. I thought that besides school, most of my life would stay the same. However, I soon realized that school shutting down meant that the other things I enjoyed, such as my evening routine of swimming and karate practices, would also come to a standstill. With my newfound time, I needed a new hobby. I used all my savings to buy a 3D printer. It was so exciting! I started to design things even before the printer was delivered. I started off making simple designs like a pencil box for my sister. My passion for 3D printing also allowed me to help out my community during the pandemic. I worked with the Good Karma Engineering initiative to create reusable masks with 3D-printed designs. Carolina Caraballo, 11, Bronx, New York

Mario Caraballo

A year ago, I said goodbye to my life as I knew it and hello to the infamous year in quarantine—2020, the year I will never forget, a year full of changes I’m still getting used to.

As a student, I was asked to change how I learn. When quarantine began, I was midway through fifth grade. One day to the next, my bedroom, kitchen and dining table became my classroom and I had to learn how to learn on a screen. Online learning had its perks and was even exciting at first—can’t beat the comfort of being home. However, the seemingly endless Zooms, messy rooms and work spaces got old real quick. No amount of screen time could make up for in-person interactions with friends. I am now in the sixth grade and have returned to in-person school two days a week. I’m grateful that I get to see teachers and friends face-to-face. I keep reminding myself that everything that 2020 has been will make for great lockdown stories to tell later and to look back on when we are older. I had a socially distanced eleventh birthday. I had endless family time. I learned how to make scrambled eggs and pancakes, banana bread and cake from scratch. Twenty years from now, a kid just like me will be learning about what I went through, in a history class. And I think that’s pretty amazing!

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‘I Want to Uplift My Community.’ Sad Girls Club Founder Elyse Fox on Destigmatizing Mental Health Care for Women of Color

Elyse Fox is on a mission. The founder of Sad Girls Club, a non-profit organization working to support and destigmatize mental health care for women of color, Fox is working to combat the mental health crisis plaguing Black Americans—one Instagram post at a time. With an artfully curated aesthetic and over 250,000 followers, Sad Girls Club has quickly become a popular resource for those seeking to engage with wellness content on Instagram. “I just wanted to create a space where we can see each other, hear each other, and provide resources that are accessible,” Fox told TIME as part of a TIME100 Talks video debuting Friday.

In 2019, suicide was the second leading cause of death for Americans aged 15 to 24 according to the U.S. Centers for Disease Control and Prevention. But certain groups within that category stand out: Black females in grade 9-12, for example were 60% more likely to attempt suicide that year compared to their white counterparts. “Black women…we’re at the lowest of the totem pole in the world. Like, we experience the most trauma on the day-to-day basis and we have the least amount of individualized mental health care,” Fox says. “And it’s hard to live in a world where you don’t see yourself reflected in the wellness space.” A 2019 study published in Pediatrics found that suicide attempts for Black youth went up 73% from 1991 to 2017, while suicide attempts decreased for white youth by 7.5%. And suicide deaths for Black American girls aged 13 to 19 increased by 182% from 2001 to 2017, according to a 2019 study published in the Journal of Community Health. While many factors contribute to the high suicide death rates of Black women and girls in the U.S., including socioeconomic status and access to mental health resources, Fox notes that a lack of education on mental health—especially across generations—likely plays a significant role. “There’s houses that are, like, ‘pray about it and then leave it alone,’” she says. “There are houses that don’t acknowledge it at all. And there are houses that want to acknowledge it, but they don’t know what to do after they know about an issue. So I think there’s a lot of unlearning and relearning that needs to in the Black community.” Read More: Suicide Among Black Girls Is a Mental Health Crisis Hiding in Plain Sight In 2016, Fox released a short film, Conversations With Friends (& Acquaintances), in which she chronicled living with depression, exiting an abusive relationship and a suicide attempt that resulted in her being put under an observational hold at the hospital. “That time was very, very lonely and it was the time that I needed support the most,” Fox says. “I feel like a lot of people can relate to this feeling and it’s such an isolating, like daunting, heavy weight that you carry. And I don’t want anyone to have to carry that weight alone.”

After sharing her film online, the New York native began to receive messages from young women and girls seeking advice on how to cope with their mental health. Soon, she launched Sad Girls Club, which features everything from virtual conversations with therapists to self-care infographics.
Before the COVID-19 pandemic, Sad Girls Club held monthly, in-person events such as poetry slams, movie screenings, tea parties and embroidery workshops. “I want to attract a different type of sad girl at every meeting,” Fox says. “You can approach the conversations of therapy in so many different ways where it doesn’t have to be a lecture about depression and what your mind is going through. We can heal through art, we can heal through expression.” “This is why Sad Girls Club was created—because I want to uplift my community. We all don’t have great days,” she says, “but I want to make sure that when you do have bad days, if you do have questions about your mental health, you have a tribe of people that understand you and that you see yourself reflected in.” During the pandemic, moderate or serious mental distress among American adults tripled last year, according to a study from researchers at San Diego State University and Florida State University. In an effort to help, Sad Girls Club launched “soul sessions,” virtual group therapy sessions led by therapists of color. That’s no small thing, given the majority of therapists in the U.S. are white; for example in, 87% of mental health counselors are white, while 14% are Hispanic, 9% Black, and 2% Asian according to a 2020 report from the U.S. Bureau of Labor. For context, Black Americans make up 13.4% of the country’s population. “When you walk into a room and see someone who looks like you, or who may have the same background as you, you kind of feel a relief,” Fox says. “Our girls are like, ‘oh my gosh, I saw a woman with the curly afro and she looked just like me and I felt like, you know, I felt seen, I felt like I was talking to my auntie.’”

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The Controversy Over the FDA’s Approval of The First Alzheimer’s Treatment Keeps Growing

“The whole thing is befuddling, and a series of inexplicable surprises,” says Dr. Caleb Alexander, professor of epidemiology and medicine at the Johns Hopkins Bloomberg School of Public Health. Alexander is a member of the U.S. Food and Drug Administration’s advisory committee that provided recommendations to the agency on whether or not to approve the Alzheimer’s drug aducanumab. On June 7, the FDA did approve the drug (under the brand name Aduhelm), in a highly controversial decision that continues to divide the Alzheimer’s community. Patients and advocacy groups, including the Alzheimer’s Association, support the approval, noting that the drug is the first to address the underlying causes of Alzheimer’s disease. While it’s not a cure or a home run therapy, they say, it’s a needed start.

Neurology and dementia experts, as well as statisticians who have looked at the data the drug makers submitted for approval are more skeptical. They note that the two large studies of the drug were hardly convincing in showing effectiveness. One study showed no significant benefit among people who received the drug compared to those getting a placebo, while the other showed only marginal improvement in cognitive tests among people getting the drug. Adding to the contention around the FDA decision is the way the agency made it. Before approving a drug, the FDA conducts a thorough review of the company’s request, which includes all the data on effectiveness, and convenes an advisory committee, made up of independent experts, to also look over and weigh in on the data. The independent panel votes on whether to approve the drug or not, and the agency takes that vote into consideration in making its decision. In aducanumab’s case, 11 members with expertise in neurology, Alzheimer’s disease, epidemiology and statistics, met in November to review the data presented by the makers of aducanumab, U.S.-based biotech Biogen and Japanese pharmaceutical company Eisai. After reviewing that data, 10 members of the committee voted that the evidence was not sufficient to approve the drug, and one was uncertain. But on June 7, the FDA decided to approve the drug anyway. Following the approval, three committee members—Dr. Joel Perlmutter, professor of neurology at Washington University St. Louis, Dr. David Knopman, a clinical neurologist at the Mayo Clinic, and Dr. Aaron Kesselheim, professor of medicine at Harvard Medical School—resigned, citing concerns over the FDA’s decision-making process for this drug. “As an advisory committee member, I am extraordinarily disappointed that our unbiased advisory committee review was not valued,” Perlmutter wrote in an email explaining his decision to TIME. “For these reasons, I resigned my membership on this committee.” Kesselheim did not immediately respond to requests for an interview, but said to STAT that the drug’s approval is “probably the worst drug approval decision in recent U.S. history.” Knopman declined to be interviewed by TIME for this article but said in an email response to CNN that “I resigned from the … committee because if I ever were asked to serve on a future panel, I wouldn’t have wanted to be treated in the disrespectful way that the aducanumab external advisers were treated.”

In addition, the committee members were surprised by a number of other apparent liberties the agency took in making its decision. The committee concluded that the evidence was insufficient for approval because while the studies showed that aducanumab could reduce levels of amyloid in the brain, there wasn’t strong enough evidence to show that reduction led to clinical benefit in the form of improved scores on cognitive tests, which are a proxy for real-world benefit. “There is insufficient evidence that A-beta [amyloid] clearance predicts clinical benefit,” Perlmutter said. “This is a major problem.” Yet in approving the drug, the FDA decided that the amyloid reduction could serve as what scientists call a surrogate endpoint—a stand-in for clinical benefit. “The committee was never consulted regarding the prospect of using amyloid as a surrogate,” says Alexander. In fact, he says, at the November meeting, the committee specifically asked FDA representatives if they would consider the amyloid reduction as a surrogate in making its decision. “The FDA advised us that it didn’t plan to do so. There was a specific query to FDA as to whether they were considering amyloid as a surrogate and they explicitly said they were not.” Dr. Patrizia Cavazzoni, director of the agency’s Center for Drug Evaluation and Research, was not available to speak to TIME, but an FDA spokesperson provided written responses to questions about the agency’s decision. In explaining why the agency accepted amyloid as a surrogate marker, the spokesperson wrote, “The advisory committee’s view was that there was insufficient evidence that the drug provided clinical benefit. Taking the advisory committee’s input into account, we considered the application further and determined that although there was residual uncertainty about clinical benefit, as the committee told us, Aduhelm does reduce amyloid plaque. FDA further concluded that it is reasonably likely that this reduction in amyloid plaque will result in meaningful clinical benefit to patients. Given the unmet needs for patients with Alzheimer’s disease—a serious, progressive, and ultimately fatal disease—the Agency chose to use the accelerated approval pathway to allow earlier access to patients while we continue to acquire data on the drug’s benefit.”

That wasn’t the only surprise. The FDA decided to use the Accelerated Approval pathway to approve aducanumab, something that also was not discussed with the committee. “The decision to use the Accelerated Approval Pathway was made at the eleventh hour, without consultation with the advisory committee,” says Alexander. “And it’s unclear why.” Unmet need for treatment vs. the need for more studies Technically, the FDA can make these decisions unilaterally, but it’s unusual not to consult an expert panel when it’s been convened and whose purpose is to provide expertise on exactly such matters. In further clarifying the agency’s decision, the spokesperson said “FDA considered the committee’s input, weighed the overall evidence in the application, and considered the dire situation of patients with [Alzheimer’s] who have few treatment options. Based upon this, the FDA concluded that an accelerated approval was appropriate.” As part of the Accelerated Approval, Biogen is required to conduct a new, randomized controlled trial to confirm the efficacy of its drug. “We are happy to do this; we don’t want there to be any lingering doubt in anyone’s mind about the efficacy of aducanumab,” Dr. Alfred Sandrock, head of research and development at Biogen tells TIME. Launching that trial, which Biogen anticipates will occur in 2022, won’t be easy since there is little incentive for people to join the study and run the risk of getting placebo when their doctor could prescribe them aducanumab, since it’s approved. While people volunteering to join the study would receive the drug for free, if they are randomly assigned to get a placebo, they would delay any benefit they might receive from getting the drug. So patients will have to weigh those factors in deciding to participate. Among strategies that Biogen scientists are discussing to incentivize people to volunteer include skewing the ratio of drug to placebo in favor of the drug so people volunteering for the trial will have a higher chance of getting drug over placebo. In any case, there’s no guarantee the results of this trial will be any more illuminating than those of the earlier large studies. “Confirmatory trials aren’t a slam dunk,” says Alexander, adding that this trial should have been required before approval of the drug, and not after. “The FDA missed an enormous opportunity by not requiring a third pivotal trial before market approval.”

While the FDA appears to have relied heavily on the unmet need in the Alzheimer’s field for an effective treatment in giving aducanumab the green light, Alexander questions whether that should trump scientific evidence—or lack thereof. “Unmet need should drive research and investment in drug development, not lower standards of safety and effectiveness,” he says. Will the approval help or harm future drug development? How FDA treats surrogate endpoints like amyloid has implications far beyond this one drug. It’s possible, for example, that taking a cue from this approval, other makers of drugs that reduce amyloid levels in the brain but have not shown significant clinical benefit—and there are at least a dozen that would fall into this category from recent years—could flood the agency with requests for approval. In addition, says Perlmutter, if a treatment for the disease exists on the market, “new Alzheimer’s disease studies may be required to no longer compare an investigational drug to placebo—as would be the standard—but rather may have to compare to aducanumab.” If aducanumab turns out not to be a strongly effective drug, that could lower the bar for future drugs and open the door to increasingly less effective therapies. More importantly for patients and their families, the approval, and rollout of aducanumab, may muddle Alzheimer’s treatment in unproductive ways. The drug has only been studied in people with the earliest signs of Alzheimer’s dementia, but in its approval, the FDA did not limit use of the drug to this population. In a June 7 briefing, Dr. Peter Stein, director of the Office of New Drugs at the FDA, defended that decision, noting that “the mechanism of [aducanumab] is relevant to all stages of Alzheimer’s disease. It’s not expected that this is only relevant necessarily to the early stages. But because amyloid is a key part, a hallmark of the disease through the entire course of the disease, the expectation is that this drug will provide benefit across that spectrum.” The benefit that patients at different stages of disease will experience, however, could vary greatly, with those starting aducanumab soon after their diagnosis potentially seeing greater slowdown of their cognitive decline than people starting the drug years after they have been living with the disease. Experts don’t know—there’s simply no data yet.

Patients and their families, however, may understandably have a hard time setting their expectations appropriately and expect the drug to improve cognitive symptoms for all comers. “That’s a tough conversation,” says Dr. Ronald Petersen, director of the Mayo Clinic Alzheimer’s Disease Research Center about how he will talk to his more advanced patients about the drug. “I’m worrying about that.” In fact, much of the responsibility for ensuring that aducanumab goes to the right patients at the right time will fall on doctors, since the FDA did not specify any requirements for use of the drug. Dr. Stephen Salloway, professor of neurology at Brown University and one of the lead investigators studying the drug, notes that aducanumab was studied in people with mild Alzheimer’s disease who had amyloid plaque already building in their brains (which can be identified using brain imaging.) Yet the FDA did not require patients to demonstrate such a baseline of amyloid to qualify for the drug, so it will be up to doctors to conduct that testing and prescribe it only in those with amyloid that the drug can target. While that might seem obvious, some previous studies of anti-amyloid drugs failed because it turned out that while patients showed signs of dementia and memory problems, they did not actually have amyloid plaques in the brain. Then there is the cost of the drug. Biogen announced that aducanumab would run about $56,000 a year for each patient, with many potentially needing to remain on the drug for years to prevent amyloid from building up in the brain. It’s not clear yet how insurers will reimburse for the treatment, but they will likely consider the financial burden of long term care of Alzheimer’s patients, which includes extensive monitoring and increasingly complex medical care as more body systems become affected. In any case, the cost to the health care system for the drug will be enormous. “The implementation of aducanumab therapy will potentially cost billions of dollars, and these dollars may be better spent in either developing stronger evidence for aducanumab or other therapeutic interventions,” said Perlmutter. For its part, Biogen believes the drug will be cost effective, even if patients need to take it indefinitely. Some participants of the early phase trial have now been on the drug for four years, and they continue to see reduction in amyloid plaques in their brains, says Samantha Budd-Haeberlein, vice president of Alzheimer’s disease discovery and development at Biogen. “We do believe the treatment does continue to benefit, so we need to learn more about how long the optimal treatment duration is for different patients.” According to the conditions of the approval, Biogen has up to nine years to complete that required study. “Patients and caregivers deserve to know that the treatments they are receiving actually work. And that’s quite unclear in this instance,” says Alexander. “And it’s unacceptable that we may have to wait nine years to find out.”

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