Recognizing how important access to telehealth services has been to millions of Americans during the COVID-19 pandemic, a bipartisan group of senators recently introduced a bill that would extend COVID-era expanded telehealth access for an additional two years after the COVID-19 public health emergency has ended, which is expected at some point during 2022. The bill, the Telehealth Extension and Evaluation Act, S. 3593, was introduced on February 7th by Senators Catherine Cortez Masto (D-NV) and Todd Young (R-IN).
Expanded access to telehealth throughout the pandemic has been particularly beneficial to the estimated 25-30 million Americans living with rare diseases, reducing their risk of exposure to COVID-19 and helping them better manage their complex health conditions from the safety of home. For the past two years, in response to the clear call rare disease patients and families in our community surveys, NORD and advocates in our Rare Action Network (RAN) have worked together and in partnership with other patient groups to advocate to ensure telehealth is available to meet the needs of rare disease patients and their caregivers.
NORD believes that effectively integrating telehealth into our health care system will lead to better outcomes for rare disease patients by reducing barriers care, shortening the time it takes to get an accurate diagnosis, and increasing access to providers with rare disease expertise. In support of these goals, we developed principles to help guide our telehealth policy efforts. To date, many states and private insurance companies have already integrated aspects of telehealth into their plans and programs, yet there is more work to be done. If signed into law, the Telehealth Extension and Evaluation Act would prevent a sudden drop in coverage, particularly amongst Medicare beneficiaries, while we continue to advocate for legislation at the state and federal level.
Another positive aspect of the Telehealth Extension and Evaluation Act is its requirement for robust data collection and analysis to help inform which policies currently in place should be made permanent. This includes an analysis of geographic data on the patients utilizing telehealth services and the location of their corresponding providers – something that is especially important to patients with rare diseases. Prior to the pandemic, a NORD survey found that nearly 40% of rare disease patients traveled more than 60 miles for their medical care. Getting better data on how telehealth is improving access to necessary care, even when it is across state lines, is particularly important for our policy efforts around ensuring patient access to health care providers practicing in a different state.
The Telehealth Extension and Evaluation Act will help protect access to telehealth services and give policy makers the information they need to appropriately integrate telehealth into our health care system. Congress has the opportunity to make this Act law right now, by including it as part of the legislative package to fund the federal government. Contact your legislators NOW and encourage them to include the Telehealth Extension and Evaluation Act in the omnibus appropriations package.
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