Today, nearly 200 patient advocacy organizations together sent a letter to leadership in all 50 states aimed at highlighting the unique access barriers created by the coronavirus and temporary policy fixes that could serve to address them.
As the CDC is currently advising people at high risk of complications – a group including people with rare diseases – to take significant precautions during the coming weeks including obtaining supplies of prescription medications and staying at home for prolonged periods of time. Without temporary adjustments to policy, this is not feasible for most Americans living with rare diseases.
The sign-on letter was led by the EveryLife Foundation for Rare Diseases and drafted based on feedback and insights from leaders of the Foundation’s Community Congress. The letter received support from nearly 200 patient organizations and was submitted to governors, insurance commissioners, Medicaid directors, and executive directors of boards of pharmacy to commend their ongoing efforts to protect the public’s health and urge that they protect rare disease patients and high-risk populations during the COVID-19 crisis.
View the letter and visit the EveryLife’s COVID-19 Action Center.
About the EveryLife Foundation for Rare Diseases
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to advancing the development of treatment and diagnostic opportunities for rare disease patients through science-driven public policy. The Foundation does not speak for patients, but instead provides the training, education, resources and opportunities to make patient voices heard. By activating the patient advocate, the Foundation believes it can change public policy and save lives.
