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Virtual Access to Doctors During the Pandemic Changed the Lives of Patients With Disabilities. Now That Care Is in Jeopardy.

Telemedicine opened up new possibilities for patients with disabilities and chronic conditions.

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Three years ago, at age 14, my sister was diagnosed with a rare chronic connective tissue disorder. Her illness makes it extremely difficult—and sometimes dangerous—for her to sit up, walk, ride in a car, and do many other everyday activities. It also means that in order to receive treatment, she has to see specialists who live in other states two or more hours away from our small Vermont town. Even going to see her primary care doctors, ironically, means potentially jeopardizing her health in the process. "It feels like a risk/reward calculation every time we go," she says.

The pandemic, despite all of its difficulties, did bring some blessings for her: All of her medical appointments shifted online and she was suddenly able to get the care she needed without the risk that going to the doctor would make her condition even worse.

While this shift to telehealth made health care easier and more accessible to everyone, it has had even bigger benefits for many people who suffer from chronic illnesses or have disabilities.

Kiki Christensen, who has suffered from a multi-system illness called Ehlers-Danlos syndrome for 45 years since the age of 10, was able to virtually access 13 new care providers—including two specialists who practice far away from her home in California—who helped her with the many multi-system side effects of her illness. She was also able to save energy during the pandemic by continuing to meet with her regular doctors virtually. 

"Telehealth enabled me to assemble the care team that I've always needed," she says over email. "Instead of the energy deficit required to cross town in a car, I was able to see doctors at home. This enabled me to save enough energy and strength to continue daily at home physical therapy, and to access an online Qigong class that helps me very much. I was also able to knock out my migraines due to the experts at USC Keck. I never would have seen them if it was only in-person because I could not drive to Keck in the past." 

This change has made a world of difference for Christensen. "I went to Disneyland with my cousin last month," she says. "I totally shocked myself with how much strength I had gained."

The broad access to telehealth across state lines was made possible by states waiving medical licensure requirements as a part of emergency orders during the pandemic. These made it possible for health care providers to have appointments with patients in other states.

Now that emergency orders are being lifted, the future of telehealth is unclear.

"One of the big benefits of what happened during the pandemic was an expansion, but it was also a sense of clarity," said Ateev Mehrotra, a healthcare policy researcher at Harvard, in a late June symposium on telehealth. "We're about to enter a time where it's very, very confusing because everyone's going to potentially have a different set of rules. And for a telehealth provider, that makes things 10 times worse because you have 10 sets of rules for every state you're in." 

Now, providers may have to give up their newer virtual patients or jump through a lot of hoops to keep them. And patients who were able to see doctors from the comfort and safety of their homes may have to again make those risk/reward calculations about whether it's worth traveling to receive care.

The good news is that a number of organizations and states are taking measures to preserve the freedom of care that telehealth has enabled. 

The Interstate Medical Licensure Compact is an agreement among 30 U.S. states that streamlines the complex licensure requirements for medical providers who want to offer telehealth care across state lines. Eligible physicians can use one application to qualify for licenses from all participating states. A similar compact, Psypact, exists for mental health providers. 

Legislators in Connecticut, Arizona, and Delaware have recently passed bills that will allow out-of-state providers to continue to provide telehealth services to those in their states.

There are also two federal bills in progress in the House and Senate that aim to reduce barriers to telehealth. The Senate bill would remove all federal geographic requirements for digital health appointments. 

"Remote access to healthcare was suddenly available for all of us during the pandemic," says Christensen. "It should have always been available, as soon as the technology permitted. Certainly, we can't take it away now for the most vulnerable among us."