Doctors with Disabilities Push for Change as Long COVID Affects Their Workforce

As the third year of the pandemic continues, doctors with disabilities are pushing the medical field to improve its treatment of disabled health professionals. An increasing number of people have Long Covid and need accommodations at work, and in the health care workforce, their ability to stay in their profession will be critical to helping patients also suffering from the little-understood condition.

One in five American adults who has been infected with COVID-19 has some lingering symptoms that can be considered Long COVID, the Centers for Disease Control and Prevention found this spring. While symptoms vary widely, Long COVID can cause health problems including brain fog, fatigue, shortness of breath, and headaches that significantly affect people’s ability to function on a daily basis. The federal government is preparing to release two reports on Long COVID in August. These ongoing health issues were likely keeping 1.6 million Americans out of the workforce earlier this year, according to an estimate from Brookings in January, and that has almost certainly increased. Katie Bach, the economist behind that estimate, recently told Congress that it’s likely about 4 million people—or 2.4% of the U.S. employed population—have a reduced ability to work because of Long COVID.

The impact on the health care workforce, experts say, could be devastating. “For those physicians and nurses that didn’t lose their lives to COVID,” says Lisa Meeks, a disability expert and assistant professor of family medicine at the University of Michigan School of Medicine, “they may very well lose their livelihood.” Meeks adds that the situation is especially dire given how many Americans with Long COVID may need care in the coming months and years. “We need these people in the workforce,” she says.

Read More: You Could Have Long COVID and Not Even Know It

While it’s not clear precisely how many health professionals will end up with Long COVID, a study published in the journal BMJ in 2020 found that health care workers were seven times as likely to have severe COVID-19 as those not in frontline jobs. Health care workers have also experienced intense burnout, depression, anxiety and other mental health issues during the pandemic, with turnover rates skyrocketing. A Morning Consult report last winter found that nearly one in five health care workers had quit their jobs during the pandemic, and now more than 2.7 million have left their jobs this year alone, according to the Bureau of Labor Statistics.

That’s part of why Meeks and a growing movement of doctors, medical students, and other health care workers are trying to transform their profession to make it more inclusive of both doctors and patients with disabilities through a new group called DocsWithDisabilities launched on July 27. The initiative aims to change the culture, policies and practices of the medical field in ways that will increase the number of doctors with disabilities across the country. People involved with the initiative will conduct research about medical professionals with disabilities, work on curricula that could help medical students learn more about caring for disabled patients, and create policy recommendations on everything from physician licensure exam questions to how schools and hospitals handle training during COVID-19 surges and what accommodations they can provide to those with Long COVID.

“We have this culture of perfectionism in our field,” says Dr. Cheri Blauwet, a sports medicine physician at Mass General Brigham and a former Paralympic wheelchair racer who has appeared on Meeks’ podcast highlighting doctors with disabilities. That can help clinicians strive to do their best work, she says, but it also “reduces our mental flexibility towards understanding that many people, inclusive of people with disabilities, can be excellent doctors when provided the right environment and the right accommodations in order to be successful.”

‘When providers are unwell, patients are unwell’

The DocsWithDisabilities initiative, which started as a social media campaign in 2018 and then a podcast highlighting stories of disabled health care workers, will now include research groups, mentorship opportunities, policy recommendations and training for medical professionals on how to better include people with disabilities.

Dr. Justin Bullock, a nephrology fellow at the University of Washington and a member of the initiative’s advisory board, says he would like to see hospitals and medical schools standardize how they handle accommodations for physicians with disabilities. Bullock has bipolar disorder and says he faced barriers in returning to his residency after he was hospitalized following a suicide attempt, but has felt supported at his current institution. “Doctors have mental illness and other illnesses because doctors are human,” he says. “The more stigmatizing and more traumatizing the systems are, the more harm we inflict on providers. And when providers are unwell, patients are unwell.”

For Blauwet, she says using a wheelchair and having been a patient herself has made her a better doctor. “Anyone can read the books and learn the facts about physiology and disease processes and treatment,” she says, “but it’s much harder to teach people empathy.” Amy Addams, director of student affairs alignment and holistic review at the Association of American Medical Colleges (AAMC), says that when non-disabled medical students interact with peers who have disabilities, they can improve on this front too.

Very few physicians report having disabilities themselves, and studies have shown that doctors often carry misconceptions about disabled people, which can impact the care patients receive. Disabled Americans have expressed concerns about their treatment throughout the pandemic, particularly as much of the country has moved away from mask-wearing and other precautions. And now those with Long COVID are facing challenges in accessing treatment for their conditions.

In 2018, Meeks co-published a report with the AAMC that documented the experiences of students and doctors with disabilities in the medical field. While stories varied, it found that many still conceal their disabilities because they fear bias or stigma. The report also found that 2.7% of medical students disclosed a disability and received formal accommodations—a much smaller percentage than the average of about 11% for undergraduate programs. In 2019, Meeks and colleagues found that 4.6% of medical students disclosed a disability, and upcoming research for 2021 will show the number at 6.1%, she says.

But while those numbers are increasing, Meeks has also found that people with disabilities disappear as they move forward in their medical careers. When people are asked whether they self-identify as having a disability, an AAMC survey found about 11% of medical students said they had a disability in 2020. Among residents, 7.5% identified as having a disability and just 3.1% of physicians said they had a disability in 2020, according to research published in JAMA Network Open. These findings were part of Meeks’ impetus for starting DocsWithDisabilities.

“There is still such deep oppression and exclusion that we haven’t gotten a seat at the table, we haven’t gotten to the places where decisions are being made around inclusion and equity,” says Bonnielin Swenor, director of the Johns Hopkins Disability Health Research Center, who has frequently collaborated with Meeks on her research.

Swenor has low vision and says she joined the disability community in her 20s, and Meeks found out she has an autoimmune disease as an adult after focusing her career on people with disabilities, so both women have been patients in situations where other medical professionals didn’t understand their experiences.

They say they need more data. There’s little data on the prevalence of people with disabilities among other health professions such as nurses, pharmacists, and dentists, for example. And data about medical students’ and doctors’ experiences during the pandemic is still being collected. After seeing how people with disabilities have been treated during the COVID-19 pandemic, Democratic Sen. Tammy Duckworth of Illinois recently got the Government Accountability Office to agree to study health care access for disabled Americans, including examining how many people with disabilities exist in the health care workforce and what kind of training doctors receive about treating disabled patients.

Read More: Tim Kaine Refuses to Let Long COVID Be an Afterthought

Also partially in response to the stress that health care providers experienced during the pandemic, medical schools have started to focus more on addressing mental health issues, says Addams. The AAMC has worked with Meeks on her research and is encouraging its members to take more steps to embrace students with disabilities.

Dr. Peter Poullos, a clinical associate professor of radiology at Stanford University who became paralyzed after a biking accident in 2003 and co-hosts the DocsWithDisabilities podcast, says that the goal of the new group is to improve health care not just for people with disabilities, but for everyone. He has seen this work through a group on disability inclusion and equity he runs at Stanford, and wants other schools and hospital systems to have similar resources.

“We’re trying to envision a future that is built with the idea that people with disabilities are here,” he says. “We should just assume that they are present and include them in the planning and the construction of a system where that doesn’t look at them as a problem, but as an opportunity.”