Diagnosed with three separate cancers – including crystal-storing histiocytosis, a form of the disorder with fewer than 200 cases reported worldwide, which can negatively affect the skin, damage bones, and impair cognition levels – Kim Eboch knows the critical importance of having an experienced, trusted care team.
"It's not about convenience," she says. "It's about survival."
Eboch, who lives in New York, quickly realized that rare conditions like hers can make finding local care options nearly impossible.
"Local doctors said I was beyond their expertise," she says. "They didn't know what to do with my case, and they had no one to refer me to. Providers saw my history as too complicated to touch. I needed the right specialists, and they were at Johns Hopkins Medicine."
During the COVID-19 pandemic, states across the nation paused licensing rules, allowing providers to offer telemedicine services across some state lines. At the time, Eboch was able to see her Johns Hopkins oncologist team via telehealth.
"When telehealth came into play, I was able to put aside everything from money worries, guilt trips of asking people to accompany me on drives, worrying about all the miles I'm putting on my van, and not being able to just get out of the van and walk since I'm in a wheelchair," says Eboch. "I was feeling relieved and comfortable, seeking exceptional medical care by sitting in the comfort of my home."
But when policies shifted and states reinstated licensing restrictions, she lost access to care – even though her Medicare and insurance allowed nationwide telehealth coverage – because her care team at Johns Hopkins was not licensed in New York.
"I was out," she says. "Just like that."
"Now that we're past the height of the COVID pandemic, many states have returned to pre-pandemic rules requiring physicians to hold a license in the same state where the patient is physically located during a telemedicine visit," says Helen Hughes, medical director of the Johns Hopkins Office of Telemedicine. "This shift is creating real barriers for patients who need specialized care across state lines."
Without access to telehealth across state lines, Eboch must now travel seven hours each way to Baltimore for every follow-up visit – spending hundreds of dollars, enduring physically taxing travel, and risking her health just to reach the doctors who understand her case. To date, she has made more than 100 trips to Johns Hopkins.
Eboch says her long road trips are made worse by chemotherapy side effects, clot risks and extreme fatigue.
"There's a lot at stake for patients like Kim if we're not able to change these rules," says Hughes.
Eboch says being able to meet with her Johns Hopkins physicians remotely would save her time, money and physical strain. More importantly, it would ensure she safely maintains access to the rare disease specialists her care requires.
"No one should lose their quality of life or their doctor because of where they live," Eboch says.
The Johns Hopkins Office of Telemedicine is working to create
policy-driven solutions to overcome barriers of cross-state care, so that financial burdens and legislative obstacles faced by patients with rare, complex conditions like Eboch's are addressed.
"We want straightforward national approaches to allow patients and providers to decide when it's appropriate to provide cross-state care," says Hughes. "The burden is the largest and changes are needed most urgently with cancer care, transplant care and rare diseases."
Patient experiences like Eboch's underscore the urgent need to modernize telehealth laws.
"Expertise, not geography, should guide care decisions," says Hughes.
Now, Eboch continues her follow-up care with Johns Hopkins. Her message to policymakers: Listen to patients like her and make changes.
"Every patient deserves access to doctors who understand their condition," says Eboch. "That shouldn't stop at a state line."
