The rapid adoption of telehealth during the COVID-19 pandemic has transformed healthcare delivery for rare disease patients, with lasting implications for specialized medical care. At Memorial Sloan Kettering Cancer Center, what began as an emergency response has evolved into a vital tool for expanding access to expert care.
Dr. Doris M. Ponce, Director of the Graft-vs-Host Disease Program at Memorial Sloan Kettering Cancer Center, describes the dramatic shift: "Before, in the pre-COVID-19 era, we barely had patients seen through telehealth. The adoption started very quickly once we were able to establish the system and there was a clinical need of our patients to be seen."
Breaking Geographic and Access Barriers
The initial pandemic response included temporary lifting of state-specific medical licensing restrictions, allowing physicians to provide care across state lines. This flexibility proved particularly valuable for patients with rare conditions requiring specialized expertise. However, as these emergency provisions expire, healthcare providers face renewed challenges in delivering continuous care to out-of-state patients.
"For patients who have a rare disease and require this ultimate level of care, having these restrictions modified for this type of patient population will critically enhance the care of patients," Dr. Ponce emphasizes. The return to pre-pandemic licensing restrictions has created obstacles for patients living near state borders or those seeking specialized care unavailable in their home state.
Unexpected Benefits and Demographic Shifts
Recent analysis of telehealth implementation has revealed surprising benefits beyond geographical access. The platform has helped address gender disparities in healthcare utilization, with data showing increased participation from female patients who previously faced barriers to in-person care.
"We saw that gap narrowed and we have more [female] patients coming to our clinic through telehealth," notes Dr. Ponce. This shift may be attributed to women's traditional roles as caregivers and the challenges they face with transportation and scheduling for in-person visits.
Future Directions and Policy Advocacy
Medical societies, including the American Society of Hematology and the American Society of Clinical Oncology, are actively advocating for policy changes to support telehealth access for rare disease patients. The goal is to create a hybrid care model that combines virtual and in-person visits while working closely with community healthcare providers.
Dr. Ponce and her colleagues are focusing on removing technological barriers and expanding support for underserved populations. "We want to break the barriers of gender disparity, of disparities [among ethnic and racial] minority populations, and use this tool that would help us to take care of our patients and work with the community," she states.
Recent research published by Dr. Ponce's team demonstrates the successful implementation of a GVHD-focused multidisciplinary telehealth clinic, providing evidence for the continued value of virtual care platforms in specialized medicine.
