The EveryLife Foundation joined the Alliance for Aging Research (Alliance) and 78 other national organizations representing patients, healthcare providers, and multi-stakeholder coalitions to sign a letter directed to the leaders of federal health care agencies urging them to rise above the political considerations and focus on providing the American public with information about the well-established guidelines in place to ensure safe and effective COVID-19 prevention, detection, and treatment. Information and decisions that are perceived as anything less than science-based weaken the public’s confidence in research and innovation and hinder adherence to mitigation efforts.
A recent poll found 78 percent of Americans worry the COVID-19 vaccine approval process is being driven by politics rather than science. It is this sentiment that federal government health officials must work with trusted partners to change if they intend to curb the deadly spread of COVID-19 and encourage widespread acceptance of an effective vaccine.
The letter, published today in the Washington, DC, edition of the Wall Street Journal to reach a wide swath of federal decisionmakers ahead of tomorrow’s Senate HELP hearing, COVID-19: An Update on the Federal Response, emphasizes the vital role American public health officials play in the prevention, detection, and treatment of the coronavirus. The letter outlines:
• To promote public health and economic recovery, government decisions must be based on evidence – not politics or individual interests.
• By clearly explaining the processes in place to ensure scientific rigor, federal agencies and government leaders will build the confidence and public trust necessary for America to meet this challenge.
• Evidence derived from clinical trials that meet FDA standards should drive assessment of which COVID-19 therapeutics are safe and effective.
• Routine, rapid, accurate, and easy-to-access COVID-19 testing—followed by timely and efficient contact tracing—is needed to help prevent community spread.
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About the EveryLife Foundation for Rare Diseases
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.
A disease is defined as rare when it affects fewer than 200,000 people in the United States. On average, rare disease patients must wait an average of six years after symptoms first present before receiving a proper diagnosis. Ninety-three percent of the 7,000 known rare diseases have no U.S. Food and Drug Administration-approved therapies. Fifty percent of rare disease patients are children, thirty percent of whom will not live to see their fifth birthdays.
