The EveryLife Foundation for Rare Diseases asks advocates to contact their Representatives in support of the newly introduced Cures 2.0 bill, H.R 6000.
Representatives Degette (D-CO) and Upton (R-MI) introduced the Cures 2.0 bill on November 16th, 2021. This bill is designed to revolutionize how the U.S provides care to patients, including provisions aimed at speeding up the delivery of groundbreaking cures, treatments, and innovations for rare diseases.
Cures 2.0 will further support and improve the health of rare disease patients by:
- Establishing additional intercenter institutes at the Food and Drug Administration, including the creation of a Rare Disease Center of Excellence to address the unique challenges of rare diseases
- Creating a new agency called Advanced Research Projects Agency for Health (ARPA-H), which is aimed at ending some of the world's most difficult diseases
- Increasing access to telehealth services for Medicare and Medicaid patients, including those covered under the Children's Health Insurance Program, known as CHIP, to ensure more Americans are getting the help they need, when they need it
- Improving FDA-CMS communications regarding transformative new therapies
- Increasing use of real-world evidence
- Expanding access to genetic testing
- Providing patients with more information about the illness they face and the treatment options available to help improve their role in the decision-making process
The legislation would also take steps to address the ongoing COVID-19 pandemic and help prepare for future pandemics, including requiring the Department of Health and Human Services to:
- Establish a grant program to help rare disease communities prepare for future pandemics
- Conduct a nationwide study on the implications of long COVID
- Develop a nationwide testing and vaccine distribution strategy to be used in future pandemics
Cures 2.0 builds on the successes of the 21st Century Cures Act, passed in 2016, to advance biomedical research, regulatory science, public health, and payment policy innovation so critical for rare disease patients and families. Community engagement was critical to the passage of this landmark legislation in 2016 and we once again encourage you to speak up and show your support for Cures 2.0.