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NORD supports robust access to telehealth services to benefit rare disease patients.
Telehealth uses telecommunication technologies and electronic information to facilitate long-distance clinical health care, allowing 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 2019 survey conducted by NORD found that nearly 40% of respondents traveled more than 60 miles for their medical care.1 Comprehensive telehealth access can help reduce the significant barriers that many rare disease patients must overcome to see a provider with expertise in their conditions.
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. Prior to the COVID-19 pandemic, telehealth was typically only available to patients living in rural areas. However, waivers and executive orders related to the COVID-19 pandemic significantly – but in many instances, only temporarily – expanded the use 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 them in caring for their patients who live in a different state. However, to date, 40 states, Guam, and the District of Columbia have chosen to join the Interstate Medical Licensure Compact (IMLC), which helps to streamline the licensing process for physicians looking to practice in multiple states. Florida joined in 2024, and NORD strongly encourages those remaining states to join the IMLC to increase patient access to physicians with expertise in their rare disease. While IMLC participation is the sole factor upon which states are assessed on telehealth within this year’s State Report Card, NORD recognizes that expanding telehealth access for rare disease patients will require IMLC participation in addition to other telehealth policy changes.
1. Rare Insights. (2020, Oct 15). Ensuring Access to Telehealth for Rare Diseases. National Organization for Rare Disorders. https://rarediseases.org/wp-content/uploads/2020/10/NRD-2098-RareInsights-Telehealth-Report-1.pdf