The irony stung: When Dean was born, he was so weak and floppy he survived only with feeding tubes because he couldn’t suck or swallow. He was diagnosed as a baby with Prader-Willi syndrome — a rare disorder sparked by a genetic abnormality. He continued to be disinterested in food for years. But doctors warned that as Dean grew, his hunger would eventually become so uncontrollable he could gain dangerous amounts of weight and even eat until his stomach ruptured.

“It’s crazy,” said Foley Shenk, who lives in Richmond, Virginia. “All of a sudden, they flip.”

Prader-Willi syndrome affects up to 20,000 people in the U.S. The most striking symptom is its most life-threatening: an insatiable hunger known as hyperphagia that prompts caregivers to padlock cupboards and fridges, chain garbage cans, and install cameras. Until recently, the only treatment was growth hormone therapy to help patients stay leaner and grow taller, but it didn’t address appetite.

In March, the Food and Drug Administration , an extended-release version of the existing drug diazoxide choline, which eases the relentless hunger and may offer insights into the biology of extreme appetite and binge eating. This breakthrough for these patients comes as other drugs are revolutionizing how doctors treat obesity, which affects of American adults. GLP-1 agonist medications Ozempic, Wegovy, and others also are delivering dramatic results for millions.

But what’s becoming clear is that obesity isn’t one disease — it’s many, said , a senior obesity researcher at the National Institutes of Health, who co-authored some of the Vykat XR studies. Researchers are learning that obesity’s drivers can be environmental, familial, or genetic. “It only makes sense that it’s complex to treat,” Yanovski said.

Obesity medicine is likely heading the way of treatments for high blood pressure or diabetes, with three to five effective options for different types of patients. For example, up to 15% of patients in the GLP-1 trials didn’t respond to those drugs, and at least the medications didn’t significantly help Prader-Willi patients.

Yet, researchers say, efforts to understand how to treat obesity’s many causes and pathways are now in question as the Trump administration is dismantling the nation’s infrastructure for medical discovery.

While Health and Human Services Secretary Robert F. Kennedy Jr. promotes a “Make America Healthy Again” agenda centered on diet and lifestyle, is being slashed, including some grants that support the study of obesity. face cuts, FDA staffers are being laid off en masse, and rare disease researchers fear the ripple effects across all medical advances. Even with biotech partnerships — such as the work that led to Vykat XR — progress depends on NIH-funded labs and university researchers.

“That whole thing is likely to get disrupted now,” said , research director for the .

HHS spokesperson Andrew Nixon said in a statement that no NIH awards for Prader-Willi syndrome research have been cut. “We remain committed to supporting critical research into rare diseases and genetic conditions,” he said.

But Strong said that already some of the contacts at the FDA she’d spent nearly 15 years educating about the disorder have left the agency. She’s heard that some research groups are considering moving their labs to Europe.

Early progress in hunger and obesity research is transforming the life of Dean Shenk. During the trial for Vykat XR, his anxiety about food eased so much that his parents began leaving cupboards unlocked.

, a pediatric endocrinologist at the University of Florida who co-led the Vykat XR trials, treats around 600 Prader-Willi patients, including Dean. She said the impact she’s seen is life-changing. Since the drug trial started in 2018, some of her adult patients have begun living independently, getting into college, and starting jobs — milestones that once felt impossible. “It opens up their world in so many ways.”

Over 26 years in practice, she’s also seen just how severely the disease hurts patients. One patient ate a four-pound bag of dehydrated potato flakes; another ingested all 10 frozen pizzas from a Costco pack; some ate pet food. Others have climbed out of windows, dived into dumpsters, even died after being hit by a car while running away from home in search of food.

Low muscle tone, developmental delays, cognitive disabilities, and behavioral challenges are also common features of the disorder.

Dean attends a special education program, his mother said. He also has narcolepsy and cataplexy — a sudden loss of muscle control triggered by strong emotions. His once-regular meltdowns and skin-picking, which led to deep, infected lesions, were tied to anxiety over his obsessive, almost painful urge to eat.

In the trial, though, his hyperphagia was under control, according to Miller and Dean’s mother. His lean muscle mass quadrupled, his body fat went down, and his bone mineral density increased. Even the skin-picking stopped, Foley Shenk said.

Vykat XR is not a cure for the disease. Instead, it calms overactive neurons in the hypothalamus that release neuropeptide Y — one of the body’s strongest hunger signals. “In most people, if you stop secreting NPY, hunger goes away,” said Anish Bhatnagar, CEO of , which makes the medication, the company’s first drug. “In Prader-Willi, that off switch doesn’t exist. It’s literally your brain telling you, ‘You’re starving,’ as you eat.”

GLP-1 drugs, by contrast, mimic a gut hormone that helps people feel full by slowing digestion and signaling satiety to the brain.

Vykat XR’s possible side effects include high blood sugar, increased hair growth, and fluid retention or swelling, but those are trade-offs that many patients are willing to make to get some relief from the most devastating symptom of the condition.

Still, the drug’s average price of $466,200 a year is staggering even for rare-disease treatments. Soleno said in a statement it expects broad coverage from both private and public insurers and that the copayments will be “minimal.” Until more insurers start reimbursing the cost, the company is providing the drug free of charge to trial participants.

Soleno’s stock soared 40% after the FDA nod and has held fairly steady since, with the company valued at nearly as of early June.

While Vykat XR may be limited in whom it can help with appetite control, obesity researchers are hoping the research behind it may help them decode the complexity of hunger and identify other treatment options.

“Understanding how more targeted therapies work in rare genetic obesity helps us better understand the brain pathways behind appetite,” said , an internal medicine physician and the director of obesity medicine at the University of Oklahoma-Tulsa’s School of Community Medicine.

That future may already be taking shape. For Prader-Willi, two other notable phase 3 clinical trials are underway, led by Acadia Pharmaceuticals and Aardvark Therapeutics, each targeting different pathways. Meanwhile, hundreds of trials for general obesity are currently recruiting despite the uncertainties in U.S. medical research funding.

That brings more hope to patients like Dean. Nearly six years after starting treatment, the now-16-year-old is a calmer, happier kid, his mom said. He’s more social, has friends, and can focus better in school. With the impulse to overeat no longer dominating his every thought, he has space for other interests — Star Wars, American Ninja Warrior, and a healthy appreciation for avocados among them.

“Before the drug, it just felt like a dead end. My child was miserable,” Foley Shenk said. “Now, we have our son back.”

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As one of the only Black kids in predominantly white schools in upper-middle-class communities — including the university enclaves of Palo Alto, California, and Chapel Hill, North Carolina — he often got detention for chatting with his white friends during class, while they got only warnings. He chalked it up to his being Black. Ditto, he said, when he was wrongly arrested as an eighth grader for a bomb threat at his school while evacuating with his white friends. So he wasn’t surprised that his behavioral issues drew punishment, even as some of his white friends with similar symptoms instead started getting treatment for attention-deficit/hyperactivity disorder.

“Black kids at a very young age, we start dealing with race, we have a lot of racial stamina,” said Wade, who now lives outside of Durham, North Carolina. “But I didn’t understand until later on that there was probably something else going on.”

After spending years grappling with self-doubt and difficult relationships — and smoking what he called “Snoop Dogg volumes of weed” from middle school until his 20s — he learned he had ADHD and dyslexia, two diagnoses that often overlap. He was 37.

It’s long been known that Black children are compared with white peers. A published in Psychiatry Research in September studied the extent of the gap by following more than 10,000 elementary students nationwide from kindergarten to fifth grade through student assessments and parent and teacher surveys. The researchers estimated the odds that Black students got diagnosed with the neurological condition were 40% lower than for white students, with all else being equal — including controlling for economic status, student achievement, behavior, and executive functioning.

For young Black males, the odds of being diagnosed with ADHD were especially stark: almost 60% lower than for white boys in similar circumstances, even though the prevalence of the condition is likely the same.

The racial ADHD divide isn’t merely a health concern. It’s deepening inequity for Black children, and especially Black males, said the study’s lead author, , the former director of the Center for Educational Disparities Research at Penn State. He now leads the at the University of Albany.

ADHD has been diagnosed in in the United States, according to a Centers for Disease Control and Prevention study published in 2022, with in the past two decades. It is often a lifetime condition that can be managed with treatments including therapy and medication. Untreated, children with ADHD face much greater health risks, including drug addiction, self-harm, suicidal behavior, accidents, and untimely death. By adulthood, many people with undiagnosed ADHD have spent years feeling isolated and hopeless, just as Wade did.

Even before Wade’s diagnosis, he was helping similar college students in a career counseling role at North Carolina State University. Today, he’s a licensed mental health and addiction counselor and doctoral student, but he said it’s been hard to see his successes.

“To the rest of the world, this is a Black man with two master’s degrees, and he’s a PhD candidate, and he has two licenses and certifications,” he said. “But to me, I’m a brother who’s had a lot of bad luck with people and jobs I’ve gotten fired from. I’ve never been promoted, ever, in my professional life.”

Wade’s experiences of race and ADHD are intertwined. “ADHD is an accelerant to my Black experience,” he said. “I can’t separate my experiences as a Black boy and Black man from my experiences of understanding my neurodivergent identity.”

People who study and treat ADHD cite several reasons why young Black males fall under the radar, including teachers who are racially biased or have lower expectations of Black students and don’t recognize an underlying disability, and Black parents who are distrustful of teachers and doctors, fearing they’ll label and stigmatize their children.

“We’ve known for a long time that ADHD diagnoses are not made in a vacuum. They’re made in a geographic context, cultural context, racial context,” said , a psychology professor at Lehigh University who studies nonmedication interventions for ADHD.

Studies have shown that ADHD underdiagnosis contributes to harsher school discipline and to the “.” Black kids routinely face punishment, including criminal prosecution, for problem behavior and mental health conditions such as ADHD, while white kids are more likely to be diagnosed with behavioral conditions and receive medical treatment and support. There’s a common saying: “Black kids get cops, white kids get docs.”

, a researcher and clinician at the University of Washington School of Medicine, focuses on decreasing mental health disparities in early childhood. By preschool, she said, Black children with ADHD symptoms are and less likely to receive appropriate treatment than their white peers.

Her that teachers’ judgments of children are heavily influenced by their opinions of the kids’ parents, and that often determines whether those children are evaluated for behavioral conditions and given appropriate support — or simply kicked out of class. She said the Penn State findings confirm what she’s seen in clinics and heard from parents.

Zulauf-McCurdy also pointed to research that shows Black children are as white kids to receive a diagnosis of conduct disorder compared with a diagnosis of ADHD. She said the racial bias and overdiagnosis of conditions such as , defined by symptoms of being uncooperative and hostile toward authority figures, result in more punitive consequences such as being isolated in separate classrooms.

To fix inequities in ADHD diagnosis, mental health experts see a need for increasing culturally sensitive screening and addressing Black families’ concerns about potential bias and racism. Ensuring access to information about symptoms and treatments for ADHD may help address obstacles to care.

Looking back, Wade said, he is grateful he got diagnosed, even if it came late. But, he said, learning about his condition earlier would have given him more confidence navigating school, work, and life. “If I was able to get a diagnosis, I would have had a lot more support and love in my life,” he said.

Behavioral tools and medication have made it easier for him to focus and to regulate his mood. The diagnosis has also helped him become more aware of how to manage his depression and anxiety.

“Now it’s an understanding of how I exist, how my brain works,” Wade said. “I don’t think that I’m just broken.”

Still, Wade wonders what the ADHD label would have meant for him as a child — despite his family’s privileges of money and education — before more awareness existed about the condition. Even now, he said, the remaining stigma around the diagnosis is probably worse for Black kids, who still get less benefit of the doubt than white children.

Today, Wade is helping Black and neurodivergent youth and adults identify ADHD and other conditions. It’s part of his work, but it’s also deeply personal.

“I remember how it felt to not be seen, to not be heard, and to have your needs dismissed,” he said. “It feels good to see other people getting the help that they need and know that it helps Black people as a whole and generations of those families.”

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But last year, Aaron was barely keeping it together — missing classes, late on assignments and struggling to explain that she understood the required material to pass her qualifying exams. Her academic adviser warned that if she didn’t get professional help she would flunk.

“I simply thought I was a lazy student and I needed to try harder,” Aaron said, wiping the tears behind her thick, black-framed glasses.

Then she was diagnosed with attention deficit hyperactivity disorder and it all made sense.

For many Black women like Aaron, finally having that answer comes with both relief and grief after years of suffering and being misunderstood. Already subject to unique discrimination at the intersection of gender and race, Black girls with ADHD often remain undiagnosed because their symptoms are mischaracterized. Signs of inattentiveness or impulsivity, two main features of the disorder, could be mistaken for laziness or defiance. And the longer these girls aren’t diagnosed and treated, the more their problems are likely to worsen as they grow into adults.

While the showed that 6.1 million children ages 2 to 17 in the United States have received a diagnosis for ADHD at some point, millions more adults are estimated to have it, too — either having grown up with a diagnosis or being diagnosed later in life, if at all.

, but white boys are still more likely to be diagnosed and treated for the condition than anyone else. Experts and advocates say this leads to an inequity in care that hurts girls of any background and children of color of any gender.

Over the past few decades, mental health experts and researchers have started to understand how ADHD manifests differently depending on gender, as girls with the condition tend to seem more inattentive and forgetful while boys tend to seem more hyperactive and disruptive. The reasons Black children and ethnic minorities are overlooked range from racial bias in schools and lack of access to care, to stigma and distrust of educators and health providers based on past discrimination.

, director of the Center for Educational Disparities Research at Penn State, is the lead author of showing that the disparities in school start early. By kindergarten, Black children in the U.S. are 70% less likely to receive an ADHD diagnosis than otherwise similar white children.

A found that by 10th grade white children are nearly twice as likely to receive a diagnosis for ADHD as Black children. Lead author Dr. , head of general pediatrics at Seattle Children’s Hospital and a top researcher at its, said that, while her study didn’t look at underdiagnosis of Black girls, federal Education Department data shows telling signs of racial and gender discrimination in diagnosing ADHD: Black girls are six times as likely to be suspended from school as white girls.

Behavior as common as talking back in class could have wildly different consequences, depending on how it’s interpreted, Coker explained. For Black girls, it’s often viewed as “intimidation” of a teacher.

“When there’s ‘bad behavior’ and you’re a white girl, you get all the benefit of the doubt,” Coker said. “On the opposite spectrum, you get zero benefit of the doubt as a Black girl.”

Over time, studies have shown that ADHD, especially in girls, can lead to increased rates of anxiety and depression, risky behavior, drug use, . Researchers and therapists said they are especially worried about those undiagnosed or undertreated.

Being diagnosed and treated, on the other hand, has many upsides. Medication and therapy, and even behavioral training for parents of patients, have proven to be highly effective in managing ADHD. However, access to such resources depends not only on a diagnosis, but also trust and buy-in from families.

René Brooks, who lives outside Gettysburg, Pennsylvania, was diagnosed three times — twice as a child, when her school tested her without parental permission. Her mother rejected the idea of her daughter, who is Black, being labeled, distrusting a system she feared wanted to “.”

The third time Brooks was diagnosed, she was 25 and on the brink of losing her job at one of the biggest insurers in the state because she couldn’t keep up with the workload. After starting medication, 18 years after her first diagnosis, she said her brain felt like it “switched on” and she was able to be more productive than she ever imagined possible.

Still, as a Black woman with ADHD, Brooks felt alone. “It’s very isolating to sit at that intersection because no one’s there, or so we thought,” she said.

She started a blog called “,” which educates and empowers Black women with ADHD, and created , a private support group on Facebook with more than 2,200 members who share the feelings that come with the diagnosis.

Aaron said finding the Facebook group and talking with other Black women with ADHD during the weekly virtual meetings made it easier to accept her diagnosis. They also commiserate about the all-too-common racialized slights known as microaggressions that she and others face — whether it’s being dismissed for showing emotion as an “angry Black woman” or having to fight for accommodations at school or being doubted at pharmacies when trying to fill prescriptions for stimulants that treat ADHD under the assumption they’re addicts trying to misuse the controlled substances, sold under brand names such as Adderall, Concerta and Ritalin.

Dr. , a child-adolescent psychiatrist, adult ADHD coach and mental health advocate in Winona, Minnesota, about her personal experience with ADHD. She recognized her symptoms during medical school — problems studying, missing appointments, forgetting to pay bills — and was officially diagnosed during her medical residency, after failing a two-day-long licensing exam. The latter was a wake-up call. “I’ve never failed at anything in my life,” said Rupert.

As a Black woman, Rupert understands why her Black female patients are so grateful to find her. It’s hard enough to find a local psychiatrist who is covered by one’s insurance and specializes in ADHD, let alone a Black female psychiatrist who has ADHD herself.

Rupert said she, too, sees a Black female psychiatrist, who shares some of the same experiences and sensitivities, which makes a big difference. “It’s taken my healing and my ability to function to the next level, because you don’t have to explain as many things.” For example, when discussing police brutality, she said, “I don’t have to spell out how exhausted or tired or traumatized I am.”

Coker and Morgan agreed that culturally and linguistically sensitive screenings are key to getting more people diagnosed. Also critical: culturally relevant groups like the Unicorn Squad.

A year and a half after being diagnosed with ADHD, Aaron said the treatment she’s received, including medication, therapy and strategies for learning and organization, has changed her life. She has since found out she also has dyslexia and a language processing disorder, two learning disabilities that commonly occur with ADHD.

Far from flunking out, she’s now thriving academically and publishing her . She wants to help other Black women going through similar struggles, just as Brooks’ Unicorn Squad helped her.

“When you start receiving treatment, the biggest impact is to your self-esteem, because you’re no longer concerned that you’re just lazy, or that you’re just unmotivated,” said Brooks. “You know this is a problem, and problems have solutions, whereas character flaws do not.”

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