Press Release: Survivors for Solutions Proposes Reimagining Healthcare Policy with a Patient-Centered Focus
In response to requests from a newly created Congressional healthcare task force, Survivors for Solutions advocates for a radical departure from today’s status quo: data that helps patients.
WASHINGTON, DC – The US House of Representatives Budget Committee launched a healthcare task force that will investigate innovative solutions to improve our nation’s healthcare system. With the task force seeking input from stakeholders, Survivors for Solutions has submitted two new policy proposals that center on one idea: helping sick patients. These ideas ensure any legislative or regulatory actions impacting the medical discovery ecosystem are properly investigated to identify potential harm. Specifically to expose the consequences for patients living with a chronic or rare disease.
Congress and federal agencies have repeatedly passed legislation and implemented rules that should come with “black box” warnings on their potential harmful side effects. We correctly have the FDA put food and drugs through rigorous testing to prevent harm to the public – the same should apply to public health policy. Especially given the impact on vulnerable sick populations when their access to innovative lifesaving treatments and medicines for patients. Survivors for Solutions seeks to put patients’ well-being at the center of public policy by proposing the following policies:
Patient Access to Cures & Treatments Act (Patient PACT Act)
The Problem: With the material impact on drug discovery seen even before the full implementation of the Inflation Reduction Act, it became obvious that Congress didn’t consider the detrimental impacts their policies would have on patients.
The Solution: The Patient PACT Act would require that any new law that would impact individuals with chronic and rare diseases be examined to ensure that it didn’t adversely affect access to treatment, potential shortages, and R&D investments.
Rx Medical Innovation Review & Accessibility Council on Legislative Efficacy Act (Rx MIRACLE Act)
The Problem: In Washington, legislation is often decided by politicians or special interests who benefit from its enactment, and little or no consideration is given to the law's impact on patients with chronic illnesses and rare diseases. Caring more about the “sick care” industry than about patient lives.
The Solution: The Rx MIRACLE Act would require that the Department of Health and Human Services (HHS) establish an annual independent review to study the impacts that any new legislation would have on chronic and rare disease patients. It would also require any major changes affecting innovative medicine to sunset after five years unless re-authorized by Congress.
Medicines rightly undergo clinical trials to prove effectiveness, controlled testing to identify possible side effects, and research to determine what is a safe dosage. Government's policy prescriptions should also undergo the same rigorous measures,” said John Czwartacki, Founder and Chairman of Survivors for Solutions. “Patients and policymakers alike should have reliable data before implementing experiments in the delicate innovation ecosystem. American patients aren’t guinea pigs; we’re just trying to survive. Too much is at risk if policymakers get it wrong.”
The Patient PACT Act and Rx MIRACLE Act are patient-centered policies that the task force should consider if they are seeking sound solutions that will ensure our nation’s healthcare system. These aim to protect patients' access to innovative medical care, promote patient-centered public policy, and provide hope to the vulnerable.
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About Survivors for Solutions
Survivors for Solutions is a coalition of illness survivors that has too often been without a unified voice and understands the immense value of medical innovation. Survivors for Solutions envisions a future that puts an end to illness through advancing cures for all diseases. Survivors for Solutions is determined to put a spotlight on the steps toward reaching that future.