Kaiser Health News

By Hannah Norman, Kaiser Health News Crystal Joseph pays for two telemedicine video services to ensure that her small therapy practice in Silver Spring, Maryland, can always connect with its clients. She’s been burned before. During one hours-long service outage of SimplePractice in late May, PsycYourMind, which offers mental health counseling and group sessions for Black patients, lost about $600 because of missed appointments. Livid, Joseph requested a small credit from the telemedicine service, which costs $432 monthly for her team of clinicians and trainees. SimplePractice refused, she said. “What they offer is phenomenal, especially being founded by a therapist,” said Joseph, a licensed clinical professional counselor. “But with a private practice, if you don’t get paid, you don’t eat.” For some sessions, she was able to hop onto her backup, VSee, which costs her $49 each month. Some of her peers use Zoom. But even though Joseph keeps links to both her SimplePractice and VSee accounts in her email signature, a last-minute switch-up can feel messy for clients, and she never charges a no-show fee when it’s an “act of God.” Major health systems, clinics and private practices alike pivoted swiftly to telemedicine when the covid-19 pandemic forced the nation to shelter in place and patients could no longer safely venture into health care settings. But the video services were not equally prepared for the titanic influx in users, said Kapil Chalil Madathil, an engineering professor at Clemson University who has researched how easy — or difficult — telemedicine platforms are to use. Videoconferencing vendors, including Zoom, tech giants like Microsoft and Cisco, and a host of telemedicine startups absorbed an explosion of demand over the past pandemic months. PitchBook estimates that revenue from the global telehealth market will hit $312.3 billion in 2026, up from $65.5 billion in 2019. But beyond connectivity issues, some services seemed designed for dissatisfaction. They required patients to download a desktop application or made them click through multiple steps to log in. “On an iPhone, I can click one button to see my grandkids,” Madathil said. “Can we not make telemedicine systems as easy as that?” Providers often were locked in with telemedicine options from services they were already using — or what they could afford. Joseph was already paying SimplePractice to house her practice’s electronic health records, so moving to another platform would have been time-consuming and costly, she said. Practitioners have depended on telemedicine to keep their businesses afloat in the pandemic, and Joseph plans to keep a portion of her sessions virtual. A one-stop shop for private practice clinicians, SimplePractice offers scheduling, an electronic medical records system and insurance claims filing along with its video services. The company said it hosted 17 million telehealth appointments last year. “The expectations are rising,” said Diana Stepner, a SimplePractice vice president. “Individuals want screen sharing, they want grid views, so we’ve added new capabilities since the pandemic began and will continue to do so.” Zoom became an overnight poster child for staying connected as employees in every line of business across the country worked from home. Its revenue jumped 326% in the fiscal year that ended on Jan. 31, 2021, over the previous year’s. Even before the pandemic, the Silicon Valley company offered a service tailored for health care practitioners that complied with the Health Insurance Portability and Accountability Act, which protects patient privacy, and could be synced with Epic Systems electronic medical records. “It was ‘all bets are off’ once the pandemic hit,” said Heidi West, who heads the health care division at Zoom. West pointed to the CARES Act and the loosening of telehealth regulations, which allowed doctors to be reimbursed for telemedicine at the same rate as for in-office visits. UCSF Health, which had contracted with Zoom for virtual visits since 2016, gave every doctor and clinician a personal link for its videoconference line and a separate virtual waiting room. Telemedicine calls for outpatient care within the San Francisco academic medical system spiked from 2% of visits in February 2020 to more than 60% by that April. Doctors were seeing patients — who often used their cellphones — in their homes, in parked cars and in one case on skyscraper scaffolding, where a construction worker stepped away for a quick doctor’s visit, said Linda Branagan, director of telehealth at UCSF Health. Zoom is not immune to glitches, Branagan said, but it seems to bounce back faster than many other vendors and “recovers quite gracefully.” UCSF surveyed its patients and found they were more satisfied with their video visits than their in-person ones. More than a year later, almost one-third of outpatient visits are still conducted virtually. Elsewhere, the initial transition was rockier. Dr. James McElligott, who runs Medical University of South Carolina’s Center for Telehealth, said the hospital could not afford to upgrade its Vidyo conferencing system, so he opted for Doxy.me, which the center already used for research and had an easy-to-use interface. “We were able to get clever, and many doctors really liked it,” McElligott said. The software has a waiting room from which patients can be transferred into virtual rooms with providers. The health system sent patients a text with a direct link for their appointments so that they didn’t lose time. “But we couldn’t control quality or solve connectivity issues ourselves,” he said. “We did have a lot of patients who, despite it just being a link, were uncomfortable waiting.” That led to some patients abandoning visits, he added. Doxy.me employed just eight people when the video telemedicine service saw an unwieldy increase in users in March 2020. For two weeks straight, the company signed up 20,000 new health care providers a day, said founder and CEO Brandon Welch, amassing a backlog of customer service inquiries. One day, Welch recalled, there was a 30-second queue for the website to load because so many people were logging on simultaneously. “We hired anyone who could walk and chew gum at the same time,” joked Welch, noting that many of those early pandemic hires, largely tackling customer service, had been recently laid off from other industries, like restaurants. Doxy.me automated the sign-up process as quickly as possible. The service ballooned from 80,000 users to 850,000 as it assembled a team of 120 employees. And it is still hiring. Doctors and clinicians can sign up for the basic HIPAA-compliant service — which includes audio, video and a patient waiting room — at no charge. But for enhanced options, like screen sharing or shared rooms, there’s a price tag of at least $29 a month. For many doctors and clinicians, the move to virtual visits may be permanent, even with all the technical hiccups. A survey conducted by SimplePractice of over 2,400 clinicians in February found that 88% expected to continue offering a telehealth option. Jessica Ehrman, a Santa Monica, California, therapist who plans to keep her practice fully remote, finds telemedicine much easier for scheduling, particularly for kids who have short windows of availability. Still, connectivity issues during that small time frame can tarnish the whole session. “If you’re talking about deep childhood trauma — having your connection time out then? It’s really frustrating when we’re paying for a service,” said Ehrman, who has been suddenly dropped from sessions, experienced lags and even once saw back-end coding pop up in her provider portal. Like Joseph in Maryland, she uses SimplePractice through her agency and personally pays for Zoom’s HIPAA-compliant option to head off technical difficulties. Despite the problems, few health care providers want to forsake the technology. “Video visits are cemented,” said Branagan. “I will never again have to have a conversation with a physician to convince them that you can do health care via video.”

By Claire Sibonney Miché Aaron has always been a high achiever. The 29-year-old is in her third year of a planetary sciences doctoral program at Johns Hopkins University, where she researches minerals found on Mars. She’s a former NASA space grant scholar and hopes to become an astronaut one day. 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 2016 National Survey of Children’s Health 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. ADHD doesn’t discriminate by gender or race, 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. Paul Morgan, director of the Center for Educational Disparities Research at Penn State, is the lead author of multiple studies 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 2016 study found that by 10th grade white children are nearly twice as likely to receive a diagnosis for ADHD as Black children. Lead author Dr. Tumaini Rucker Coker, head of general pediatrics at Seattle Children’s Hospital and a top researcher at its Center for Child Health, Behavior and Development, 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, self-harm and suicide attempts. 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 “drug up minority children.” 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 “Black Girl, Lost Keys,” which educates and empowers Black women with ADHD, and created Unicorn Squad, Black People of Marginalized Genders With ADHD, 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. Loucresie Rupert, a child-adolescent psychiatrist, adult ADHD coach and mental health advocate in Winona, Minnesota, also blogs 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 research on Martian minerals. 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.”

By Victoria Knight President Joe Biden’s executive order of July 9 included various steps toward making good on campaign promises to take on pharmaceutical companies by allowing the importation of prescription drugs and curbing the high cost of medicines. These issues were key to candidate Biden’s 2020 health care platform, which stated he would “stand up to abuse of power” by drugmakers. Biden promised on his campaign website that he would allow consumers to buy prescription drugs from other countries, as long as the Department of Health and Human Services deemed it safe. In speeches, candidate Biden also pledged to bring down drug costs by 60%. Nearly six months into his term, Biden issued an executive order on promoting economic competition, which included moves toward fulfilling these promises. KHN has teamed up with our partners at PolitiFact to analyze Biden’s promises during the 2020 presidential campaign — and, so far, experts generally say the jury is still out on how meaningful these efforts will be. Drug Importation Promise: “To create more competition for U.S. drug corporations, Biden will allow consumers to import prescription drugs from other countries, as long as the U.S. Department of Health and Human Services has certified that those drugs are safe.” The July 9 executive order directed the Food and Drug Administration commissioner to work with states to develop a program allowing prescription medications to be brought in from other countries, particularly Canada. However, several drug pricing experts told us that, of all the policy ideas aimed at reducing the cost of drugs, importation seems the least likely to happen. “Other countries are not interested in facilitating this,” said Benedic Ippolito, a senior fellow in economic policy studies at the American Enterprise Institute. Matthew Fiedler, a fellow with the USC-Brookings Schaeffer Initiative for Health Policy, agreed. “This policy is unlikely to ever work as intended because Canada is unlikely to allow the export of drugs to the United States,” Fiedler wrote in an email. That’s because drug manufacturers would then probably demand higher prices in Canada, since those would become the de facto U.S. prices, he said. “That would cause a big increase in prices in Canada that Canada likely wishes to avoid.” This is not the first time a president has suggested importing drugs, notably from Canada. President Donald Trump put forward the same idea during his time in office. Democrats and Republicans alike have supported similar proposals. During the Trump administration, a rule was finalized allowing states to seek the FDA’s permission to import drugs. Several states then passed laws to that end, but Florida is the only state to have formally applied to the FDA. The agency has yet to make a decision on the request. The Pharmaceutical Research and Manufacturers of America, the trade industry group representing major pharmaceutical companies, sued HHS in 2020 in an attempt to get this drug importation rule overturned. The litigation is ongoing, though the Biden administration has asked for the case to be dismissed. In a May court filing, the administration argued the case was pointless because it’s unclear whether any state importation plan would be approved anytime soon. Canada has signaled its concern that exporting drugs to the U.S. could trigger shortages within its borders, and after the Trump-era rule was finalized, the country moved to block bulk exports of medications in short supply. Still, Rachel Sachs, a law professor and drug pricing expert at Washington University in St. Louis, said Biden’s “rehabbed” policy isn’t a bad thing. “Drug pricing has been a big problem for several years now, and there are many policy ideas on the table. We don’t lack for policy ideas — we lack for actual implementation of those ideas,” Sachs wrote in an email. “So I don’t think it’s concerning at all if the administration chooses to advance existing policy ideas rather than developing new ones from scratch.” It’s also important to remember that Biden has just released an executive order directing that these things happen. It is just a first step in a long line of steps, including issuing rules and allowing time for public comment. That means details of how this importation policy would work are not yet available. The executive order calls for a report to be issued 45 days afterward with a plan outlining specific efforts to reduce prescription drug prices. “I assume we’ll know more then,” Sachs said. The High Cost of Drugs Promise: “I’m going to lower prescription drugs by 60%, and that’s the truth.” On this pledge, the recent executive order outlined the president’s vision for how to proceed. The order included an initiative designed to shore up the approval framework for generic drugs and biosimilars, working with the Federal Trade Commission to address efforts to impede competition for these types of drugs and help Medicare and Medicaid incorporate new payment models to cover them. Experts so far have offered measured reactions. The administrative actions outlined in this executive order do have the potential to reduce prescription drug prices, said Fiedler of the USC-Brookings Schaeffer Initiative. But it depends on more than just what the order says. “In each of these areas, whether prices actually fall will depend on the details of the proposals the administration ultimately puts forward,” Fiedler wrote in an email. “However, these are all areas where there are opportunities to make changes that would have a meaningful impact.” Again, more will be known in 45 days, the deadline for the release of the plan to reduce prescription drug prices. It’s important to note that the FTC is an independent agency, so Biden’s principal means of influencing drug policy comes from his appointments to the agency, said Fiedler. It does seem likely, though, he added, that the newly appointed FTC chair would be sympathetic to cracking down on market conduct that delays the entry of generic drugs or biosimilars. Still, reducing drug prices by 60% would require legislation, said the AEI’s Ippolito. “And the most disruptive drug pricing reforms — those that could even sniff that kind of price reduction — are also the most unlikely to pass,” Ippolito wrote in an email. “In short, I suspect that this executive order isn’t going to make much headway.” Trump also promised last year on the campaign trail that he would lower drug prices by 60%, after repeatedly promising to reduce medication costs during his four years in office. However, little progress was made toward that goal despite several related executive orders in 2020. While Biden’s executive order has a different focus than most of the Trump-era drug pricing orders, the Biden administration has signaled it may still be open to embracing some of those policies. Trump’s directives focused on rebates paid to pharmacy benefit managers being rerouted to beneficiaries, reducing the cost of insulin by compelling federally qualified health centers to make the drugs available at low prices to low-income people, importing drugs from Canada and tying drug prices to the prices paid in other countries. Three proposed rules that resulted from Trump’s orders are being kept around by the Biden administration — at least for the time being. One is the “Most Favored Nation Model.” This rule is supposed to match U.S. prices for certain classes of drugs with the lower amounts paid in countries that negotiate drug prices. According to Politico, the Biden administration’s regulatory office received the rule this month, which means there may be a new public comment period before the rule is finalized — though it’s likely this would take some time. And, of course, there’s the pending Trump administration rule on drug importation, currently tied up in court. Trump’s rebate rule, meanwhile, has also been delayed. The Biden administration pushed back its effective date to January 2023. Freezing the rule was part of the Biden administration’s policy to review any rules finalized in the final months of Trump’s term. No other Trump drug pricing efforts made much headway. Instead, they drew a fair amount of industry pushback. And it remains to be seen whether Biden’s directives will fare any better. Experts agreed that most likely congressional action would be needed to achieve a 60% reduction in prices. With over three years left in Biden’s term, who knows what could still happen? For now, we rate these promises “In the Works.”

By Christina Bennett At 15, Autumn Fuernisen is dying. She was diagnosed at age 11 with a rare degenerative brain disorder that has no known cure or way to slow it down: juvenile-onset Huntington’s disease. “There’s lots of things that she used to be able to do just fine,” said her mom, Londen Tabor, who lives with her daughter in Gillette, Wyoming. Autumn’s speech has become slurred and her cognitive skills slower. She needs help with many tasks, such as writing, showering and dressing, and while she can walk, her balance is off. Autumn has been turned down for clinical trials because she is too young. “It is so frustrating to me,” Tabor said. “I would sell my soul to try to get any type [of treatment] to help my daughter.” For patients like Autumn with serious or immediately life-threatening conditions who do not qualify for clinical trials and have exhausted all treatment options, there may be another option: seeking approval from the Food and Drug Administration for expanded access, or compassionate use, of experimental therapies. Definitive numbers are hard to find, but studies from researchers, actions by drugmakers and insights from experts suggest that getting expanded access to unproven therapies for rare diseases is more difficult than for more common illnesses, such as cancer. Even with experimental treatments on the rise, patients with rare diseases frequently face an unwillingness by drug companies to provide them before clinical studies are completed. Developing drugs for these diseases is an especially fragile process because the patient populations are small and often diverse, having different genetics, symptoms and other characteristics, which makes studying the drugs’ effects difficult. Drugmakers believe offering a drug before studies are finished could impair its development and jeopardize FDA approval. Companies working on therapies for rare diseases, especially smaller ones, could feel those repercussions acutely, said Lisa Kearns, a researcher in the ethics division of New York University’s medical school and member of the division’s working group on compassionate use and preapproval access. “There’s not as much investment in rare diseases, so an [adverse] event could frighten the already limited number of potential investors.” Drugs that were not made available for compassionate use last year until studies were completed include Evrysdi, for spinal muscular atrophy; Enspryng, for an autoimmune disease of the optic nerve and spinal cord called neuromyelitis optica spectrum disorder; and Viltepso, for certain patients with Duchenne muscular dystrophy. A spokesperson for Roche, which makes Evrysdi and Enspryng and is working on a treatment for Huntington’s disease, said the decision was tied not to the type of disease but to company policy: Roche does not set up expanded access programs for any drugs until results are available from a phase 3 clinical trial. (Those phase 3 studies are typically the last testing done before the company seeks drug approval.) Another company’s experimental drug for myasthenia gravis, an autoimmune disease that leads to skeletal muscle weakness, similarly was not available through an expanded access program until research was completed last year, and no programs have started for a therapy being studied in a phase 3 clinical trial for Huntington’s disease and for amyotrophic lateral sclerosis (ALS), a fatal neurodegenerative disease often referred to as Lou Gehrig’s disease. One slight, but notable, deviation: Drugmaker Biogen agreed this year to allow certain ALS patients to receive an experimental drug as early as July 15, after the testing was to be completed but before the results are known. Dr. Merit Cudkowicz, a neurologist at Massachusetts General Hospital in Boston, has helped patients get therapies through expanded access. Since September 2018, she and colleagues launched 10 programs that seek to match people with ALS therapies being developed by drug companies, but only about 120 patients have received therapies this way. More than 16,000 people in the United States were estimated in 2015 to have ALS and most do not qualify for clinical trials because of the progression of their disease or very strict eligibility requirements. These examples contrast with some drugs for more common problems. Gleevec, for leukemia, was offered to thousands of patients through expanded access programs before the manufacturer completed the clinical studies that led to FDA approval. Videx, for HIV/AIDS, and Iressa, for the most common type of lung cancer, were similarly offered to large numbers of patients even as clinical trials were ongoing. Last year, Novartis gave more than 7,000 patients worldwide early access to cancer drugs. Doctors also report that getting experimental drugs for cancer patients is relatively simple. More than 200 physicians around the country were surveyed, and among those who applied for access, nearly 90% said they had secured drugs still being investigated for patients who were not responding to approved therapies. California researchers found similar trends in a review of 23 social media campaigns launched by patients between 2005 and 2015 seeking a variety of experimental treatments. While seven of the 19 patients with cancer received early access to requested drugs, no access was allowed for three patients with rare diseases, although one of those patients was allowed to enroll in a clinical trial. Companies base their decisions on whether to provide a therapy through expanded access on a number of factors, said Jess Rabourn, CEO of WideTrial, which helps pharmaceutical companies run compassionate use programs. In general, there should be evidence that patients can tolerate the treatment and an expectation that any benefit outweighs the risk, he said. “This idea that you have to wait until the research is done is baloney,” he said. “We’re talking about patients who are going to die if they’re told to wait.” But drugmakers often view it differently, even though evidence suggests that granting early access very rarely disrupts drug approval. Kearns explained that companies often wait until phase 3, or after, because they can be “relatively” confident of a drug’s safety and effectiveness. “They don’t want to harm patients, of course, but they also do not want to threaten the drug’s eventual regulatory approval with an adverse event in [a] very sick patient population.” Melissa Hogan, who consults on clinical trials for rare diseases and is an FDA patient representative, attributes the lack of access to the high cost of therapies and the tightknit nature of the rare disease community, where patients and their families often set up social media groups and exchange ideas and treatment plans. Companies “know that if one patient gains access, other patients will know” and ask for access, said Hogan, who has a son with mucopolysaccharidosis type II. That could overwhelm small drugmakers with little manufacturing capacity. These concerns cause “many companies [to] just throw up their hands and take a hard line of no [expanded access] until they reach approval stage,” said Hogan. The 2018 Right to Try law offers another option for some patients. Unlike expanded access, the law applies only to requests for medicines — not medical devices — and does not require approval from the FDA or an institutional review board, a committee that reviews and monitors people participating in research for their protection. The legislation, however, doesn’t oblige companies to grant a request. For Cali Orsulak, expanded access may be her husband’s only option. He was diagnosed with ALS in 2019 at age 43. “We did our best with the skill level we had to search clinical trials all over Canada and the U.S., and then covid hit and it became increasingly difficult,” said Orsulak, explaining that they live in Canada but seek medical care in the United States. “Now that my husband has progressed, it’s even harder to get into clinical trials.”

By Jenny Gold, Kaiser Health News In the eyes of the tech industry, mental health treatment is an area ripe for disruption. In any given year, 1 in 5 adults in the U.S. experience a form of mental illness, according to federal estimates. And research indicates only about half of them receive treatment in a system that is understaffed and ill distributed to meet demand. For tech startups looking to cash in on unmet need, that translates into more than 50 million potential customers. Venture capital firms invested more than $2.4 billion in digital behavioral health apps in 2020 — more than twice the amount invested in 2019 — touting support or treatment for issues from burnout and depression to ADHD and bipolar disorder. At least seven mental health app companies have achieved “unicorn” status and are valued at more than $1 billion. But even as industry hype mounts, researchers and companies are scrambling to prove these apps actually work. Of the estimated 20,000 mental health apps available for download on personal computers and smartphones, just five have been formally vetted and approved by the Food and Drug Administration, which largely has taken a hands-off approach to regulating the space. “Development has really outpaced the science,” said Stephen Schueller, a clinical psychologist at the University of California-Irvine who specializes in the development and evaluation of digital mental health products. Type “depression” or “anxiety” into an app store, and you’ll be met with a dizzying list of results. There are thousands of “wellness” apps like Headspace that counsel people on breathing exercises and other techniques to help them feel more mindful. Apps such as Woebot and TalkLife profess to help manage conditions like anxiety and postpartum depression using games, mood journaling or text exchanges with peers or automated bots. Some apps are meant to be used alongside in-person therapy, and others on their own. Several of the most popular, like Talkspace, BetterHelp and Ginger, promise access to treatment with a licensed therapist over text message, phone or video. Others, including Brightside and Cerebral, connect users to psychiatrists who can prescribe antidepressants. Most products make their money by charging consumers a monthly or annual fee, with the option to purchase extras like video sessions with a therapist. Others contract directly with employers or insurers. And, yes, a small portion of these apps have promising research to back them up. Several studies, for example, have found that cognitive behavioral therapy, a mainstay of treatment for depression and anxiety that seeks to help patients change negative thought patterns, is as effective when delivered using web-based platforms as when done in person by a licensed professional. And the pandemic has bolstered claims that patients are willing to trade in-person visits for the ease of online connection. “Digital mental health can be viewed as a way to extend the mental resources that we have,” said David Mohr, who directs the Center for Behavioral Intervention Technologies at the Northwestern University Feinberg School of Medicine. A step-care model, for example, would allow patients with milder symptoms to be treated via technology while reserving in-person care for patients who need something more. The challenge for consumers is separating the apps that might help from those that offer little more than distraction — or could actually do harm. Some companies offering mental health treatment had recently been doing something totally different — for example, an online seller of erectile dysfunction and hair loss treatments has started offering psychiatric evaluations and prescribing and selling antidepressants. Tech companies are by nature for-profit and, in the rush to compete in a saturated market, many are selling a product with an appealing user interface but little evidence of effectiveness. A 2020 analysis by Australian researchers reviewing nearly 300 apps for anxiety and depression found just 6% of the companies that boasted an evidence-based framework in the app store description for their products had published any evidence. Nor do star ratings and download totals offer much context: An April study from Beth Israel Deaconess Medical Center and Harvard Medical School found little correlation between app store metrics and treatment quality. “No one is competing based on privacy, safety or evidence. They’re competing on aesthetics, in part, on page ranking, marketing on brand awareness,” said Dr. John Torous, director of the digital psychiatry division at Beth Israel Deaconess Medical Center and one of the authors of the April study. “There’s an implicit assumption that the app is better than nothing. But what if it isn’t better than nothing?” One problem, said Dr. Ipsit Vahia, a geriatric psychiatrist and medical director of the McLean Institute for Technology in Psychiatry, is that randomized control studies of the kind that might prove an app’s effectiveness can take years, far slower than the rapid innovation in tech. “In general, the health care industry and the technology industry work at very different paces,” Vahia said. Dr. David Mou, a psychiatrist at Massachusetts General Hospital who is chief medical officer at Cerebral, said he agrees that everything new in health care must be done deliberately and conservatively to avoid patient harm. But he said some people in the mental health field are painting all companies with the same brush and failing to differentiate those that are data-driven from those trying to grow at any cost. “They look at us and say we’re all VC-backed bros in a basement trying to redesign health care. And that’s not true. It may have been true 10 years ago, but it isn’t true today,” said Mou. The long-term winners, he said, will be those that are “evidence-based and measure quality like crazy.” Cerebral offers online therapy and medication management and delivery for a range of mental illnesses. The monthly subscription fees range from $29 to $325, depending on the level and frequency of care, as well as insurance coverage. Mou said Cerebral is already able to demonstrate some advantages. While many top hospital systems might have a months-long wait for care, he said, someone in crisis can reach a Cerebral provider almost immediately. “Within minutes you are able to talk with someone with one of our instant live visits. That in itself is a huge win.” Even critics of the tech explosion are quick to acknowledge that the current brick-and-mortar system of mental health is dated and inadequate. In recent years, the issues surrounding mental illness and lack of access to treatment have infiltrated public dialogue. Brain illnesses that many families once squirreled away from view have become the stuff of celebrity culture and dinner-table chatter. Yet even as advocates have made strides in acceptance, truly improving the lives of people with mental illness has proven stubbornly difficult. Over the past several decades — while the U.S. successfully lowered death rates for cancer, heart disease and other major illnesses — deaths by suicide and drug overdose have continued to climb. Federal law theoretically requires insurance companies to cover brain illness as they would any other illness. But finding affordable care remains a challenge, largely because of a shortage of licensed mental health professionals and ongoing inequities in insurance coverage. In a nation where huge swaths of the population lack a primary care doctor and health insurance — but most everyone has a cellphone — connecting people to treatment via mobile apps would seem a logical solution. And, for some, the opportunity to talk about their mental health challenges anonymously makes online treatment an attractive alternative. Still, many of the experts who welcome the potential for innovation in mental health treatment acknowledge that consumers are getting little guidance in how to choose a reputable option. “Wellness” apps that promote a healthy lifestyle or apps that help people manage their disease without providing specific treatment suggestions can avoid FDA regulation. But even those that offer patient-specific diagnoses and treatment recommendations that would seem to fall squarely under the FDA’s authority do not seem to garner the agency’s attention, according to industry experts. “The FDA has been really, really lax on enforcing in digital health for reasons that are not entirely clear to me,” said Bradley Merrill Thompson, a lawyer at Epstein Becker Green who advises companies on FDA regulations. “Anybody could spend 20 minutes on the app store and find dozens of examples of apps that make medical device claims, and that have been doing so for some time, without any effort by the FDA to rein them in.” In response to questions from KHN about its approach to regulating mental health apps, the FDA sent a brief statement. “As circumstances change and new needs arise, FDA is ready to meet and address these challenges, especially in the areas of mental health,” the statement reads in part. “We would like to see more evidence-based products in this area, which is why we remain committed to facilitating the development of additional safe and effective therapies for patients who rely on these products.” Dr. Tom Insel, a psychiatrist and neuroscientist, has a unique view of the evolving landscape. In 2015, Insel left his job as director of the National Institute of Mental Health, a post he had held since 2002, trading the halls of government for the open floor plans of Silicon Valley to work in digital mental health. He started at Google’s Verily, then co-founded Mindstrong Health, a startup researching how smartphone technology could be used to predict and diagnose mental health crises. He has since left to advise California officials on behavioral health issues. Insel said he believes in the promise of digital mental health but that it will take time to find its highest and best use. He noted, for example, that most of the apps on the market focus on the problem of access: They make care more convenient. But they’re overlooking a more basic problem: quality. Unlike most fields of medicine, mental health providers rarely measure whether the care they provide makes patients better. “A lot of what we need is not just more access. It’s not just recreating the brick-and-mortar system and letting people do it by phone or Zoom,” Insel said. Instead, he argued, digital health should focus on measuring whether treatments improve people’s lives. “I have no doubt that this field will transform mental health treatment and diagnosis,” Insel said, “but we’re in the first act of a five-act play. I don’t think we’re anywhere near the kinds of solutions that we need in the real world.”

By Bernard J. Wolfson For more than a year, public health officials have repeatedly told us that masks save lives. They’ve warned us to keep our distance from our neighbors, who’ve morphed into disease vectors before our eyes. Now they are telling us that if we’re vaccinated, we no longer need to wear masks or physically distance ourselves in most cases — even indoors. To many people, myself included, this seems hard to reconcile with so many long months of masking and physical distancing and sacrificing our social lives for fear of covid-19. What is an anxious, pandemic-weary (and wary) soul to do? First, it’s important to stress that the dramatic rollback of mask-wearing and physical distancing recommended last month by the Centers for Disease Control and Prevention — a policy California has adopted starting Tuesday as part of a broader reopening — applies only to people who have been fully vaccinated. Even if you are vaccinated, though, you don’t need to change your behavior one iota if doing so makes you uncomfortable. “Nothing in the CDC guidelines says to stop wearing a mask,” says Dr. José Mayorga, executive director of the UCI Health Family Health Centers. “It’s a recommendation, but if you choose to wear one, that’s OK. You shouldn’t be stigmatized.” Mayorga has lost five relatives to covid, including a favorite aunt, and he knows from personal experience how hard it can be to rush back into so-called normalcy. “Many people have not been directly impacted by covid,” he says. “But for those of us who have been, it’s natural to have concern or fear, thinking, ‘Oh, I can take my mask off? But is it really safe?’” Some people are just cautious by nature and won’t be rushing to jettison their masks and rub elbows with unmasked strangers. “I know that, realistically, I can do pretty much anything once I’m fully vaccinated, but mentally it’s scary,” says 36-year-old Sacramento resident Shannon Albers, who got her second dose of the Pfizer vaccine on May 27. “It’s going to be weird, after a year of them drilling into us ‘Wear a mask, wear a mask, wear a mask,’ to be around a bunch of people who aren’t wearing masks.” Early in the pandemic, the CDC said masks were not necessary. Then, it changed its guidance so emphatically that masks became an indispensable part of our wardrobes. Now the advice has changed again. “For scientists, it is very understandable that there is this revision of recommendations based on new research,” says Roxane Cohen Silver, a professor of psychology, public health and medicine at the University of California-Irvine. “But for the general public, that could sound very confusing.” Early on, many people feared catching the coronavirus from surfaces and even disinfected groceries before putting them away. Now, the virus is believed to spread mainly through the air, and the notion of spraying or wiping down everything you bring into the house seems silly. We don’t know how long the vaccines’ protection lasts, but it is increasingly clear that being vaccinated reduces the risk of infecting others. “Vaccinated people have very little risk of infection; they can do what they want to do,” says Dr. George Rutherford, a professor of epidemiology at the University of California–San Francisco. “I think we’re in pretty good shape, and I think it’s going to be pretty much a disease-free summer.” In California, the rate of positive covid tests has dropped from a seven-day average of over 17% in early January, at the peak of the winter surge, to under 1% now. The number of hospitalized covid patients statewide has fallen from over 22,000 to below 1,300 in the same period. Around 46% of Golden State residents have been fully vaccinated, lagging behind numerous other states but ahead of the national rate of just under 43%. Some millions more have built up immunity after a covid infection. As more people get protection, the covid virus finds fewer susceptible bodies, further reducing transmission and producing a downward spiral in the number of cases. If you are indoors with other people you know to be vaccinated, you can dispense with masks. Want to cook dinner for a group of vaccinated friends you haven’t seen for several months? Carpe diem — and don’t worry about wearing masks or sitting spaced apart. But if you are in a mixed crowd — say, a grocery store — and don’t know who’s vaccinated, wear a mask, even though your personal risk is low. If the workers are wearing masks, it’s a matter of respect to wear one yourself. Some people may be nervous about being there — those who are immune-compromised, for example, or can’t get vaccinated for some other health reason — and they won’t know if you’ve had your shots. “Forget about the medical benefit,” says Bradley Pollock, associate dean for Public Health Sciences at the UC-Davis School of Medicine. “If you are wearing a mask, people who are not vaccinated don’t need to feel uncomfortable around you. So, it’s kind of a courtesy issue.” The presence of children is another good reason to mask up. Most kids ages 12 to 16 haven’t been vaccinated yet, and those under 12 can’t be, yet. They’ll probably have to wear masks in school this fall. And though children have not been hit by covid nearly as hard as adults, and are not efficient transmitters of the virus, thousands of kids have been hospitalized with it nonetheless — including about 4,000 nationwide diagnosed with a frightening multisystem inflammatory syndrome. Mayorga, who is fully vaccinated and has young children, says he wears a mask “to protect them and to model good behavior.” Public health experts agree that vaccinating as many people as possible, including children, is the way out of the pandemic. But the rate of vaccinations has slowed recently. One of the biggest contributions you can make to the public good right now is to get vaccinated — and help others do the same. Some people aren’t vaccinated because they lack mobility and can’t get to an appointment. Check in with elderly neighbors, and if they haven’t been vaccinated and need a ride, offer to drive them. You can also check with your local department on aging, community groups that serve the elderly, public health agencies or hospitals to ask if they are seeking drivers. Perhaps the biggest impact you can have is persuading friends and loved ones to get the vaccine – and then urging them to persuade others. If they think the vaccines were rolled out too fast to be safe, tell them that related coronavirus vaccine research has been going on for more than a decade. Point out that hundreds of millions of covid shots have now been given and serious side effects are rare — and are being carefully monitored by officials. You might also need to rebut the widespread notion that the vaccine could suddenly produce some terrible, unforeseen health impact a few years down the road. “That just doesn’t happen,” Pollock says. Expect to encounter resistance at first, but be persistent. It can take numerous conversations to assuage anxieties, but your close friends will listen. “If your best friend tells you they did this, that’s highly influential — more than some talking head,” Pollock says.

By Katheryn Houghton By the time Kiki Radermacher, a mental health therapist, arrived at a Missoula, Montana, home on an emergency 911 call in late May, the man who had called for help was backed into a corner and yelling at police officers. The home, which he was renting, was about to be sold. He had called 911 when his fear of becoming homeless turned to thoughts of killing himself. “I asked him, ‘Will you sit with me?’” recalled Radermacher, a member of the city’s mobile crisis response team who answered the call with a medic and helped connect the man with support services. “We really want to empower people, to find solutions.” Missoula began sending this special crew on emergency mental health calls in November as a pilot project, and next month the program will become permanent. It’s one of six mobile crisis response initiatives in Montana — up from one at the start of 2019. And four more local governments applied for state grants this year to form teams. Nationwide, more communities are creating units in which mental health professionals are the main responders to psychiatric crises instead of cops, though no official count exists of the teams that are up and running. More support is on the way. The covid relief package President Joe Biden signed in March offers states Medicaid funding to jump-start such services. By July 2022, a national 988 hotline, modeled on 911, is slated to launch for people to reach trained suicide prevention specialists and mental health counselors. Protests against police brutality in the past year have helped propel the shift across the United States. While one rallying cry has been to “defund the police,” these crisis intervention programs — the sort that employ therapists like Radermacher — are often funded in addition to law enforcement departments, not drawing from existing policing budgets. Studies suggest such services enable people in crisis to get help instead of being transported away in handcuffs. But the move away from policing mental health is still a national experiment, with ongoing debate about who should be part of the response, and limited research on which model is best. Even then, not all communities can afford and staff separate mental health teams. “I don’t know that there’s a consensus of what the best approach is at this point,” said Amy Watson, a professor of social work at the University of Wisconsin-Milwaukee who has studied such crisis intervention. “We need to move towards figuring out what are the important elements of these models, where are the pieces of variation and where those variations make sense.” The federal Substance Abuse and Mental Health Services Administration sets minimum expectations for teams, such as including a health care professional and connecting people to more services, if needed. Ideally, the guidelines suggest, the team should include a crisis response specialist who has personally experienced mental health challenges, and the team should respond to the calls without law enforcement. Still, crisis response teams vary significantly in their makeup and approach. For more than 40 years, the Los Angeles Police Department has deployed teams in which police officers and mental health workers respond together. It boasts the program is one of the nation’s earliest to do so. A program out of Eugene, Oregon, which has been copied across the U.S., teams a crisis intervention worker with a nurse, paramedic or emergency medical technician. In Georgia, 911 emergency dispatchers steer calls to a statewide crisis center that can deploy mobile units that include professionals with backgrounds in social work, counseling and nursing. In Montana, teams are based within law enforcement departments, medical facilities or crisis homes. “Mobile crisis response, in whatever format it looks like, is becoming more and more the norm,” said Kari Auclair, an area director for Western Montana Mental Health Center, a nonprofit treatment program. “In some communities, it’s going to be the church group that’s going to be part of a crisis response, because that’s who people go to and that’s what they’ve got.” Defenders of the various models tout reasons for their teams’ makeups and match-ups: Medics can recognize a diabetic blood sugar crash that might mimic substance misuse or a mental health crisis; police can watch for danger if tensions escalate; and crews tethered to hospitals’ behavioral health units have a team of doctors on standby they can consult. Many crisis teams still work directly with law enforcement, sometimes responding together when called or staying on the scene after officers leave. In Montana, for example, 61% of the calls that crisis teams handled also involved law enforcement, according to state data. Zoe Barnard, administrator for Montana’s addictive and mental disorders division, said her state is still establishing a baseline for what works well there. Even after they’ve worked out a standard, she added, local governments will continue to need flexibility in how they set up their programs. “I’m a realist,” Barnard said. “There will be parts of the state that are going to have limitations related to workforce, and trying to put them into a cookie-cutter model might keep some from doing something that really does the job well.” In some areas, recruiting mental health workers to such teams is nearly impossible. Federal data shows 125 million people live in areas with a shortage of mental health professionals, a problem exacerbated in rural America. That lack of expertise and support can fuel the crises that warrant emergency help. In Helena, Montana’s capital, for example, a crisis crew that formed in November must still fill two positions before services can run round-the-clock. All across the U.S., with these sorts of high-stress jobs often paid through cobbled-together grants, retaining staff is a challenge. Being flexible will be key for programs as they develop, said Jeffrey Coots, who directs an initiative at John Jay College of Criminal Justice in New York City to prevent unnecessary imprisonment. “We’re trying to figure our way out of historical inequities in mental health care services,” Coots said. “The best thing to do is to run that demonstration project, and then adapt your team based on the data.” And for the people in these crises who need help, having an alternative to a police officer can mean a big difference, said Tyler Steinebach, executive director of Hope Health Alliance Inc., which offers behavioral crisis training for medics across Montana. He knows firsthand because he has both bipolar and post-traumatic stress disorders and has had to call 911 when his own mental health has plummeted. “You know cops are coming, almost certainly,” Steinebach said, from his personal experience. “You’re trying to figure out what to say to them because you’re trying to fight for yourself to get treatment or to get somewhere where you can talk to somebody — but you’re also trying to not get hauled off in handcuffs.” Gallatin County Sheriff Dan Springer also noticed the benefits after two mental health professionals started to respond to 911 calls in Bozeman and the surrounding area in 2019. Although deputies in his department are trained in crisis intervention, he said that goes only so far. “When I hear deputies say the mental health provider is a godsend, or they came in and were able to extend the capabilities of the response, that means something to me,” Springer said. “And I hear that routinely now.” Erica Gotcher, a medic on the mental health response team in Missoula, recalled a day recently when her team was wrapping up a call and received three new alerts: A man was considering suicide, a teen was spiraling into crisis and someone else needed follow-up mental health services. They knew the suicide risk call would take time as responders talked to the person by phone to get more details, so they responded to the teen hitting walls first and saw all three people before their shift was done. Gotcher said being busy is a good sign that her team — and teams like it — are becoming just one more form of first response. “Sometimes we roll up on a scene and there are three cop cars, an ambulance and a firetruck for one person who is having a panic attack,” Gotcher said. “One of the best things that we can do is briefly assess the situation and cancel all those other resources. They can go fight fires; they can go fight crime. We are the ones that need to be here.” But gaps still exist, such as not always having somewhere to take a patient who needs a stable place to recuperate or get more help. The team’s shift also ends at 8 p.m., meaning, come nighttime, it’s back to police officers responding alone.

By Julie Appleby, Kaiser Health News When the pandemic sidelined in-office visits at his practice, Dr. Dael Waxman “wasn’t exactly thrilled with being at home.” But he quickly shifted gears to video and telephone appointments. Now, he finds, there are good reasons to keep these options open even as in-office visits have resumed and many parts of the country have sharply loosened coronavirus restrictions. One is that some patients “have to overcome a lot of obstacles to get to me,” said Waxman, a family physician with Atrium Health in Charlotte, North Carolina. “I have lots of single mothers. They have to leave work, get their kids out of school and then take two buses. Why would they want to do that if they don’t have to?” Telehealth served as a lifeline for many during the pandemic, ramping up from a minority share of office visits to a majority, at least for a while. Still, it cannot replace hands-on care for some conditions, and for those not blessed with speedy broadband internet service or smart devices it can be difficult or impossible to use. As things head toward a new normal, lawmakers and insurers, including Medicare, are debating how to proceed, the biggest question being whether to continue reimbursing providers at the same payment rate as for in-person coverage once the covid public health emergency ends. While that debate rages — one side pointing to the costs associated with setting up such services, the other arguing that payment rates should decline because telehealth services are cheaper to provide — patients are left to decide if such visits meet their needs. KHN put such questions to physicians, who gave tips on the types of concerns that are best handled in person, and when video visits are most useful. Not surprisingly, they recommended that patients ask their provider which type of visit is most appropriate for their particular circumstance. Four additional things we learned: 1. Some things just need to be done in person. Chest pains, new shortness of breath, abdominal pain, new or increased swelling in the legs — all those things point to the need for an in-person visit. And, of course, blood tests, vaccinations and imaging scans must be done in person. “If your blood pressure is really high or you have some symptoms of concern like chest pain, one needs to go to the office,” said Dr. Ada Stewart, president of the American Academy of Family Physicians, which posted an online guide for telemedicine visits. If patients are concerned enough about the situation that they are considering going to an urgent care clinic or even an emergency room, “they should be seen,” said Waxman. And that would occur in person. If a condition, even something seemingly simple, hasn’t resolved in a reasonable time, go to the office. Waxman recalled a patient with an eye issue who went to urgent care and received antibiotics, but the eye was still irritated after treatment. “Because it had not resolved, I was worried about shingles of the eye,” he said. It turned out not to be shingles, but a different problem, Waxman learned after referring the patient to an ophthalmologist. In-person visits can also prove more productive because a physician gains visual clues to what might be wrong by watching how a patient walks, sits or speaks. While video visits are wonderful, said Dr. David Anderson, a cardiologist affiliated with Stanford Health Care in Oakland, California, sometimes things come up in person that might not over video. “I can’t say how many times I sit with a patient and I think we’re done — then the thing that’s really the problem gets brought up and we spend the next 45 minutes on it,” he said. Finally, a good reason to go in is, simply, if that’s what you prefer. “I had a patient the other day who said he could have done a phone visit but was old-school and just preferred being in the office,” Waxman said. 2. Sometimes a televisit is better. It’s not always necessary to trek into a medical office or clinic. Stewart, at the family physician group, said check-ins for chronic conditions, such as diabetes or hypertension, “that are basically under control” can easily be handled remotely. Cardiologist Anderson concurred, especially for periodic assessments or checking how a patient is handling a new medication. “If I have a [stable] 82-year-old patient and her daughter needs to miss work and come from 30 miles away to bring Mom in for us to sit there for 15 minutes to chat, that’s something where the efficiency of a video visit is good,” he said. But if that same patient complains that “when they take a morning walk, they are short of breath and they were not before, that person I would want to see face to face.” And, sometimes, video follow-ups for stable patients with chronic illnesses are preferable. “On the phone or by video, I found there to be a lot more non-distracted time for education,” he said. It is helpful if patients can monitor their blood sugar or blood pressure at home and then report their statistics during the televisit. But some patients cannot afford a home blood pressure monitor, so that can be a limitation, Waxman cautioned. And even those who have a monitor should initially take it into the office to make sure it is accurate, he said. Some dermatologic conditions — think rashes and such — can be handled by video, so long as the patient is comfortable using the camera on their smartphone or computer tablet and can get a good picture of the problem area. While 70% to 80% of skin issues can start with a video visit, he estimated, the rest require in-person evaluation, perhaps even a biopsy. 3. Everything works better when both sides prepare. Both patients and providers can get the most out of a video visit if they first take a few simple steps, the experts said. Find a quiet place without distractions. Turn off the TV. Have a family member present if you want a second set of ears, but choose a private setting if you don’t. “ You will not believe the circumstances where people Zoom in to me,” said Anderson. Some are in their cars, “maybe because that’s the best place where they get internet service,” or they’re in their pajamas, just finishing breakfast. “There’s a whole lack of preparation and seriousness that occurs,” he said. Have a list of medications you’re taking and write down the problem or symptoms you wish to discuss, as well as specific questions you have, to make the most out of the time available, advised Stewart. Providers, too, need to take steps. Anderson said they should read patients’ medical records ahead of time and focus because there are fewer cues to a patient’s concerns over video than in person. Physicians “have to be doubly vigilant,” Anderson said, pay attention to all their suspicions and be extra thorough because “it would be much easier to miss something important.” 4. What might happen next? Some advocates say insurers should make sure that their reimbursement policies don’t favor one type of visit over another and that no patient feels pressured into a televisit. During the covid emergency, Congress and the agency that oversees Medicare temporarily made it easier for beneficiaries to use telehealth — for instance, by removing geographic restrictions and allowing audio-only visits in some circumstances. Medicare also began reimbursing providers equally for telehealth and in-person care. Many private insurers followed Medicare’s lead; some also voluntarily waived cost-sharing requirements for telehealth patients. Many expect Medicare Advantage plans to keep covering televisits once the emergency is officially over, and traditional Medicare could follow suit. The Medicare Payment Advisory Commission, a nonpartisan agency that advises Congress, has recommended temporarily continuing to cover some services while the agency gathers data about a wide range of effects, including concerns that telehealth raises spending and the advantages it may offer. That data is important, said Fred Riccardi, president of the Medicare Rights Center. The expansion has helped many Medicare beneficiaries, he added, but “has left some communities behind,” including the oldest adults, those with disabilities and those in areas with spotty internet service. And future policies should ensure that patients who prefer in-person visits can continue them, he said. Anderson, the cardiologist, agreed that televisits “have a wonderful place” in the range of options, but he warned against cost-saving measures by insurers that might require patients to have a video visit before being granted coverage for an office visit. “I would see that as an unfortunate delay in care,” he said.

By Cindy Loose The day Dr. Elizabeth Dawson was diagnosed with covid-19 in October, she awoke feeling as if she had a bad hangover. Four months later she tested negative for the virus, but her symptoms have only worsened. Dawson is among what one doctor called “waves and waves” of “long-haul” covid patients who remain sick long after retesting negative for the virus. A significant percentage are suffering from syndromes that few doctors understand or treat. In fact, a yearlong wait to see a specialist for these syndromes was common even before the ranks of patients were swelled by post-covid newcomers. For some, the consequences are life altering. Before fall, Dawson, 44, a dermatologist from Portland, Oregon, routinely saw 25 to 30 patients a day, cared for her 3-year-old daughter and ran long distances. Today, her heart races when she tries to stand. She has severe headaches, constant nausea and brain fog so extreme that, she said, it “feels like I have dementia.” Her fatigue is severe: “It’s as if all the energy has been sucked from my soul and my bones.” She can’t stand for more than 10 minutes without feeling dizzy. Through her own research, Dawson recognized she had typical symptoms of postural orthostatic tachycardia syndrome, or POTS. It is a disorder of the autonomic nervous system, which controls involuntary functions such as heart rate, blood pressure and vein contractions that assist blood flow. It is a serious condition — not merely feeling lightheaded on rising suddenly, which affects many patients who have been confined to bed a long time with illnesses like covid as their nervous system readjusts to greater activity. POTS sometimes overlaps with autoimmune problems, which involve the immune system attacking healthy cells. Before covid, an estimated 3 million Americans had POTS. Many POTS patients report it took them years to even find a diagnosis. With her own suspected diagnosis in hand, Dawson soon discovered there were no specialists in autonomic disorders in Portland — in fact, there are only 75 board-certified autonomic disorder doctors in the U.S. Other doctors, however, have studied and treat POTS and similar syndromes. The nonprofit organization Dysautonomia International provides a list of a handful of clinics and about 150 U.S. doctors who have been recommended by patients and agreed to be on the list. In January, Dawson called a neurologist at a Portland medical center where her father had worked and was given an appointment for September. She then called Stanford University Medical Center’s autonomic clinic in California, and again was offered an appointment nine months later. Using contacts in the medical community, Dawson wrangled an appointment with the Portland neurologist within a week and was diagnosed with POTS and chronic fatigue syndrome (CFS). The two syndromes have overlapping symptoms, often including severe fatigue. Dr. Peter Rowe of Johns Hopkins in Baltimore, a prominent researcher who has treated POTS and CFS patients for 25 years, said every doctor with expertise in POTS is seeing long-haul covid patients with POTS, and every long-covid patient he has seen with CFS also had POTS. He expects the lack of medical treatment to worsen. “Decades of neglect of POTS and CFS have set us up to fail miserably,” said Rowe, one of the authors of a recent paper on CFS triggered by covid. The prevalence of POTS was documented in an international survey of 3,762 long-covid patients, leading researchers to conclude that all covid patients who have rapid heartbeat, dizziness, brain fog or fatigue “should be screened for POTS.” A “significant infusion of health care resources and a significant additional research investment” will be needed to address the growing caseload, the American Autonomic Society said in a recent statement. Lauren Stiles, who founded Dysautonomia International in 2012 after being diagnosed with POTS, said patients who have suffered for decades worry about “the growth of people who need testing and treating but the lack of growth in doctors skilled in autonomic nervous system disorders.” On the other hand, she hopes increasing awareness among physicians will at least get patients with dysautonomia diagnosed quickly, rather than years later. Congress has allocated $1.5 billion to the National Institutes of Health over the next four years to study post-covid conditions. Requests for proposals have already been issued. “There is hope that this miserable experience with covid will be valuable,” said Dr. David Goldstein, head of NIH’s Autonomic Medicine Section. A unique opportunity for advances in treatment, he said, exists because researchers can study a large sample of people who got the same virus at roughly the same time, yet some recovered and some did not. Long-term symptoms are common. A University of Washington study published in February in the Journal of the American Medical Association’s Network Open found that 27% of covid survivors ages 18-39 had persistent symptoms three to nine months after testing negative for covid. The percentage was slightly higher for middle-aged patients, and 43% for patients 65 and over. The most common complaint: persistent fatigue. A Mayo Clinic study published last month found that 80% of long-haulers complained of fatigue and nearly half of “brain fog.” Less common symptoms are inflamed heart muscles, lung function abnormalities and acute kidney problems. Larger studies remain to be conducted. However, “even if only a tiny percentage of the millions who contracted covid suffer long-term consequences,” said Rowe, “we’re talking a huge influx of patients, and we don’t have the clinical capacity to take care of them.” Symptoms of autonomic dysfunction are showing up in patients who had mild, moderate or severe covid symptoms. Yet even today, some physicians discount conditions like POTS and CFS, both much more common in women than men. With no biomarkers, these syndromes are sometimes considered psychological. The experience of POTS patient Jaclyn Cinnamon, 31, is typical. She became ill in college 13 years ago. The Illinois resident, now on the patient advisory board of Dysautonomia International, saw dozens of doctors seeking an explanation for her racing heart, severe fatigue, frequent vomiting, fever and other symptoms. For years, without results, she saw specialists in infectious disease, cardiology, allergies, rheumatoid arthritis, endocrinology and alternative medicine — and a psychiatrist, “because some doctors clearly thought I was simply a hysterical woman.” It took three years for her to be diagnosed with POTS. The test is simple: Patients lie down for five minutes and have their blood pressure and heart rate taken. They then either stand or are tilted to 70-80 degrees and their vital signs are retaken. The heart rate of those with POTS will increase by at least 30 beats per minute, and often as much as 120 beats per minute within 10 minutes. POTS and CFS symptoms range from mild to debilitating. The doctor who diagnosed Cinnamon told her he didn’t have the expertise to treat POTS. Nine years after the onset of the illness, she finally received treatment that alleviated her symptoms. Although there are no federally approved drugs for POTS or CFS, experienced physicians use a variety of medicines including fludrocortisone, commonly prescribed for Addison’s disease, that can improve symptoms. Some patients are also helped by specialized physical therapy that first involves a therapist assisting with exercises while the patient is lying down, then later the use of machines that don’t require standing, such as rowing machines and recumbent exercise bicycles. Some recover over time; some do not. Dawson said she can’t imagine the “darkness” experienced by patients who lack her access to a network of health care professionals. A retired endocrinologist urged her to have her adrenal function checked. Dawson discovered that her glands were barely producing cortisol, a hormone critical to vital body functions. Medical progress, she added, is everyone’s best hope. Stiles, whose organization funds research and provides physician and patient resources, is optimistic. “Never in history has every major medical center in the world been studying the same disease at the same time with such urgency and collaboration,” she said. “I’m hoping we’ll understand covid and post-covid syndrome in record time.”

By Sandy West Olivia Klassen’s face lights up when she talks about summer camp. She loves to do the scavenger hunt with her camp friends. She also loves paddleboarding, swimming in the lake and “kitchen raids.” But what she loves most is being surrounded by kids who, just like her, have Type 1 diabetes — which allows her to focus on having fun instead of being different. “Camp is a top priority for me,” Klassen, 13, said of Camp Ho Mita Koda. “I don’t really feel the same without camp. That’s my second family, my home away from home. Being there makes me feel like a normal kid, because everyone is doing the same things I do.” Camp Ho Mita Koda, in Newbury Township, Ohio, is one of about 300 American summer camps focused on people with special health concerns, including developmental disabilities or dietary and medical needs, said Colette Marquardt, executive director of the American Camp Association’s Illinois office. It is one of the few overnight special needs camps that remained in-person last year, and it will welcome campers again this year even though it could be months more before kids younger than 12 can be vaccinated against covid-19. While mitigating the risk of covid infections at any of the country’s approximately 15,000 camps is a priority, it is an imperative for camps hosting people who might be at higher risk of serious illness, Marquardt said. Last summer, many medical camps developed “virtual camps” — often with care packages containing supplies for art projects and other camp activities — after organizers were unable to overcome logistical, equipment and staffing needs to operate in person safely. Some medical camps will remain virtual this summer, while others are easing back into in-person activities with shortened overnight camps, day camps and family camps. Camp Ho Mita Koda, building off last summer, will offer weeklong overnight camps again this year with multiple layers of protocols in place. The camp will again have fewer campers each session and will require physical distancing, covid testing and quarantining by staff members — most, if not all, of whom will have been vaccinated. Campers, who will be organized into small cabin cohorts that will stay together for the duration of the camp, will be required to wear masks when engaging with anyone outside their cohort. Masks will not be required while sleeping, eating, swimming or showering. “Families and kids want and need camp,” said Ian Roberts, director at Camp Ho Mita Koda. “It is pretty evident with the number of registrations we see each week.” Special needs camps commonly offer traditional activities such as swimming, zip lining, horseback riding and archery, but they also fill a powerful role for campers and their families, said Marquardt. A camper may be the only kid in their school who has diabetes or a food allergy or uses a wheelchair — which can feel isolating. But at camp, they are surrounded by people with the same or similar challenges. They also get a chance to experience independence and take part in activities they may have thought were off-limits before. “It’s a place where the people who go to camp get to do the things they see other kids doing that they didn’t think they could do,” said Arbie Hemberger. Her 46-year-old daughter, Cindy, who has mild cerebral palsy, has attended an Easterseals camp in Nebraska since she was 6. Because special needs camps have medical staffers on-site, they often provide a respite for parents who lack other caregivers for their kids. Hemberger, who lives in Nebraska, said she didn’t have anyone with whom she could easily leave her daughter when Cindy was young. So camp became the one week each year she and her husband could relax and take some time for themselves. “You don’t have to worry about her because you know she’s with people who know what to do and are going to take good care of her,” she said. While many of the traditional summer camps that offered in-person sessions last year operated safely by following guidelines from the American Camp Association, as well as rules from local and state health departments, there were exceptions. For example, at a Wisconsin overnight camp for high school students, 76% of students and staffers tested positive for covid after one camper developed symptoms. The camp had required negative tests prior to arrival. While staffers were required to wear masks, campers were not, and physical distancing was not observed in sleeping cabins. “While there were definitely stories of camps that had outbreaks, most did not,” said Marquardt. With a year of experience, she said, camps are in an even better position to operate safely this year. However, for some special needs camps, the risk remains too great — at least for this summer. The American Diabetes Association’s 23 overnight and 20 day camps will remain virtual this year, with organizers hoping to return to in-person events next year. Michelle Foster, program director, said it was just too risky to operate so many camps across the country while navigating local coronavirus regulations and case rates, as well as securing enough equipment and personnel. Diabetes can be a complicating factor for covid. Foster said she thinks the ADA will continue to offer at least some virtual camp options well into the future because they reach more people throughout the country — and abroad — who may not otherwise be able to attend. This summer, Easterseals Nebraska will offer its virtual camp, but it also has developed a variety of in-person programs this year, including an overnight campout at the Omaha zoo, and “sampler camps” with two hours of activities, such as fishing or crafts. Cindy Hemberger and her mom began registering her as soon as they got word she could attend a three-day day camp, in which campers will meet at a different location, like a zoo or state park, each day. “It was fun to do it in virtual, but I wanted to do it in person,” Cindy said. “It’s important.” Jami Biodrowski, the camp’s director, agreed. The camp has served people ranging in age from 5 to 86. Attendees include people of all abilities, including those who require wheelchairs or have autism or mental health challenges. In the past, some younger campers didn’t have special needs but were the siblings of campers, or their parents wanted them to spend time with people who have different needs. Biodrowski said the isolation and lack of connection so many people have felt during the pandemic is what life is regularly like for many of her campers. And for them, the pandemic just exacerbated those issues. “We knew we were important before, but man, now we really know,” she said. In Ohio, Roberts was determined last summer to bring kids back to the now 92-year-old Ho Mita Koda, which he described as “a world-class camp that just happens to do diabetes very well.” Like other directors of special needs camps, he hears from parents and campers — past and present — that the sense of independence and the friendships made with others who experience life the same way helps inspire the kids to more confidently embrace a future with diabetes. Olivia Klassen, who lives in the western suburbs of Cleveland, first attended camp in 2019, shortly after she was diagnosed. She and her family were a bit in shock, and she was embarrassed to answer questions about the bag of medical supplies she had to keep with her at all times. Her parents said that, when they picked her up on the last day of camp, she was joyful and determined. She organized a diabetes awareness day at her school a few months later, and now runs Instagram and YouTube accounts dedicated to talking about life with diabetes. “I do not think Olivia would be where she is today with her diagnosis had it not been for camp,” said Sandi Klassen, her mom. “That was just a huge catalyst in showing her that, first off, you are not alone and that, second, you are capable of doing more than you think you are. It’s life-changing.”