NORD supports robust access to telehealth services to benefit rare disease patients.
Telehealth allows patients and their health care providers to exchange health information without being in the same room. Given there are often few health care providers with expertise in a specific rare disease, it is not a surprise that a survey of rare disease patients and caregivers conducted by NORD in 2019, found that nearly 40% of respondents reported traveling more than 60 miles for their medical care. Robust telehealth access can help reduce the significant barriers that many rare disease patients must overcome to see a provider with expertise in their conditions.
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Both the federal government and state governments have the power to regulate aspects of telehealth, including health provider licensure requirements, reimbursement rates and eligible services. While telehealth was typically only available to patients living in rural areas, waivers and executive orders related to the COVID-19 pandemic have significantly – but in many instances, only temporarily – expanded the utilization of telehealth services.
Recognizing the importance of telehealth to the rare disease community, NORD drafted principles in 2020 to guide NORD’s engagement on the numerous changes being considered for telehealth. One of NORD’s principles is that all patients should have equal and effective access to telehealth services, which includes establishing clear pathways for state licensure to enable patients to be seen by their in-state and out-of-state providers via telehealth. Licensing for health care providers is regulated by individual states and has proven to be a barrier for health providers caring for patients that live in a different state. However, to date, 37 states and the District of Columbia have chosen to join the Interstate Medical Licensure Compact, which helps to streamline the licensing process for physicians looking to practice in multiple states. Four of these states joined in 2022 alone, and NORD strongly encourages those remaining states to join the Interstate Medical Licensure Compact as a means to increase patient access to physicians with expertise in their rare disease. Given the rapidly changing landscape around telehealth, this is the sole factor upon which states are assessed on telehealth within this year’s State Report Card.