September 25, 2020 the Honorable David Ige Governor State of Hawaii

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September 25, 2020 The Honorable David Ige Governor State of Hawaii State Capitol Honolulu, HI, 96813 Dear Governor Ige, As the leading national organization that represents individuals living with spinal muscular atrophy (SMA), Cure SMA asks that your Administration and health agencies and providers in your state ensure priority access to COVID-19 vaccines to Hawaii residents with SMA as well as their families and in-home direct care workers. On September 16th, the U.S. Department of Health and Human Services (HHS) released an interim playbook for states to assist in the planning and distribution of a COVID-19 vaccination. In the playbook, HHS recognized the possibility that there may be a limited supply of COVID vaccines in the early stages. HHS noted that states can focus their efforts on providing direct care, maintain societal function, and addressing “those at highest risk for developing severe illness from COVID-19.” SMA is a progressive neurodegenerative disease that robs people of physical strength and impedes their ability to walk, swallow, and—in the most severe cases—even breathe. SMA impacts 1 in 11,000 births in the U.S. among all races, ethnicities, and genders. Based on Cure SMA estimates, 54 individuals with SMA and their families live in Hawaii. Hawaii residents living with SMA are at an increased risk for severe illness from COVID-19 due to underlying health conditions, a category identified in the HHS playbook as being one of the “populations of focus for initial COVID-19 vaccination.” Neuromuscular and respiratory muscle weakness associated with SMA can progress to respiratory failure during a viral illness. Individuals with SMA may also utilize the assistance of an in-home health aide or personal care worker to assist with their activities of daily living. Healthcare personnel and essential workers were also identified in the HHS playbook as a priority population within Phase 1 distribution of COVID-19 vaccine doses. Based on the HHS guidance, Hawaii and other states must submit their vaccination plans to HHS by October 16, 2020. As you develop your plan, please include recommendations and make plans to ensure Phase 1 access to a COVID-19 vaccine for individuals with SMA, their families, and in- home health workers living in Hawaii. Thank you in advance for supporting the health and safety of individuals with SMA, their families, and in-home essential health care workers. Sincerely, Kenneth Hobby Mary Schroth, M.D President Chief Medical Director 925 Busse Road, Elk Grove Village, IL 60007 | 800-886-1762 | [email protected] | cureSMA.org .

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