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NORD supports robust access to telehealth services to benefit rare disease patients.

Prior to the pandemic, nearly 40% of patients in a NORD survey reported traveling more than 60 miles for their medical care.1 Unfortunately, this is the reality for many rare disease patients, given that there are often few health care providers with expertise in a specific rare disease. Telehealth allows patients and physicians to exchange health information without being in the same room and can 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 historically 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. As a result, telehealth has been an effective tool to help rare disease patients meet their health care needs from the safety of their homes, while reducing their risk of COVID exposure.

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, 30 states have chosen to join the Interstate Medical Licensure Compact, which helps to streamline the licensing process for physicians looking to practice in multiple states. NORD strongly encourages the 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, in this year’s State Report Card, this is the sole factor upon which states are assessed as described below.

In the future, NORD plans to evaluate states on a wider range of aspects of telehealth that are vital for the rare disease community. For example, we may choose to issue grades to states based on whether their laws and regulations ensure that the choice to utilize telehealth remains with patients and their providers. This would include whether policies require parity in coverage between telehealth and non-telehealth care, and evaluations of patient out-of-pocket costs and prior authorization requirements. It also means ensuring that rare disease patients without broadband access can utilize audio-only telehealth services and that patient privacy is protected when using telehealth services.

To learn more about NORD’s telehealth policy work, check out our policy statements page here.


Grading Methodology:

Given the rapidly evolving telehealth policy landscape, for the latest edition of the State Report Card, states’ telehealth grades will only be based on their participation in the Interstate Medical Licensure Compact (IMLC). Participation in the IMLC helps facilitate patient access to physicians practicing in another state, improving the ability of rare disease patients to be seen by providers with expertise in their condition, regardless of where the patient lives or the physician practices medicine.

States that have implemented or passed legislation to implement the IMLC within the last year will be graded as “Pass”.

States that have not passed legislation to join the IMLC or states that are significantly behind on implementation will be graded as “Fail”.