Telehealth services have been critical to maintaining safe and consistent access to health care for patients with rare diseases such as Congenital Muscular Dystrophy throughout the pandemic. The rare disease community recognized the advantages of telehealth even long before the pandemic hit in 2020. Telehealth provides an opportunity for patients to receive care from a disease-specific expert who practices in another part of the country. We know that travelling hundreds and sometimes thousands of miles for a routine medical appointment is not uncommon for an individual with a rare disease and their caregiver. Additionally, telehealth expands opportunities for research participation without frequent and costly travel, missed work, and time away from family.
With the pandemic seemingly waning, regulations that made telehealth possible under emergency provisions could be rolled back to pre-pandemic levels. That’s why Cure CMD supports the Telehealth Extension and Evaluation Act (S. 3593) which will establish a 2-year extension of the telehealth services allowed during the pandemic, while ensuring a thorough evaluation of these services prior to future action by Congress to permanently integrate telehealth into our health care system.
We encourage those living in the US to contact your Members of Congress now and ask them to support this crucial legislation by including it in the Fiscal Year 2022 federal appropriations package. Even if you aren't currently using telehealth services, many of your fellow CMD community members are and would greatly benefit from an extension of these services. With this easy to complete form, it only takes a few minutes to ask for support.