Retract the Policy Capping NIH Indirect Costs at 15%

15% NIH INDIRECT COST LIMIT WILL CRIPPLE VITAL RESEARCH

Research is key to finding a cure for cystic fibrosis and countless other diseases that impact life expectancy and quality of life. Unfortunately, tens of thousands of research projects at medical and academic institutions nationwide are at risk of collapsing, due to a proposed policy that caps NIH (National Institutes of Health) grant funding of indirect costs at 15%.

This shift in policy will render many research projects related to cystic fibrosis, cancer, heart disease, and countless other diseases financially incapable of continuing. We must help our decision makers to understand the devastating implications of this policy. Please join CFRI in asking your elected representatives in the House and Senate to retract this policy so that research can continue to preserve the lives of our loved ones.

Fund the California Rare Disease Advisory Council

CALIFORNIA'S RDAC REQUIRES FUNDING TO ENACT CHANGE!

The Jacqueline M. Zbur Rare Disease Advisory Council (RDAC) (AB 2613, 2024) establishes an advisory body for the California Legislature to help ensure healthcare access and health equity. With over 10,000 rare diseases affecting 1-in-10 Californians, a strong RDAC will help relieve burdens on the State by conducting research, crafting policy recommendations, and advocating for critical initiatives.

Despite AB 2613 being signed into law by Governor Gavin Newsom, creation of this Council—comprised of stakeholders across the rare disease community—remains stagnant until the budget request is passed. Join CFRI in urging the Assembly Budget Subcommittee No. 1 on Health to support funding for the RDAC to ensure rare disease voices and perspectives are prioritized in legislative decision making.

Support Medicare Coverage for Multi-Cancer Early Detection Screening

TECHNOLOGY EXISTS TO DETECT MUTLIPLE CANCERS & SAVE LIVES

The bipartisan Nancy Gardner Sewell Medicare Multi-Cancer Early Detection Screening Coverage Act (MCED) (H.R. 842 / S. 339) has been reintroduced in both the House and the Senate. The bill would ensure Medicare coverage for innovative FDA-approved early cancer detection tests, beginning in 2028 for those 68 years old and younger. In 2024, the bill had broad support yet had insufficient time for passage. This year, the bipartisan bill already has 174 co-sponsors in the House, and 40 cosponsors in the Senate.

As life expectancy for people with cystic fibrosis (CF) increases, the prevalence of cancer diagnoses follows suit. In addition to those with CF reaching the age to be eligible for Medicare, a growing number of individuals with CF under age 65 also rely on Medicare through their Social Security Disability Insurance status (16.8% among those ages 30-35; 26.8% among those ages 40-64). This bill has the potential to save and extend the quality of life for those with CF as well as millions of Americans through advanced and more comprehensive multi-cancer early detection (MCED) screening. Currently, only five types of cancer are commonly screened for, and more than 70% of cancer diagnoses are in the Medicare population. Join CFRI in asking your elected representatives in the House and Senate to support MCED screening today!

NOTE: To see whether your Representative and Senators are supporters of the bill, click on the bills below. You will be able to click on your state to see the list of cosponsors. If they are supporting the legislation, you can thank them in the optional “add your personal message” box.