With the 119th Congress well underway, the cystic fibrosis community is continuing a steady drumbeat of advocacy to educate Congress about the vital importance of protecting the National Institutes of Health, the U.S. Food and Drug Administration, and Medicaid for people with CF. 

Since January, CF advocates have held roughly 200 meetings - including more than 180 meetings during our 18th annual March on the Hill. There, we also welcomed new National Volunteer Advocacy Committee co-chairs Kirk Astroth and Brittney Householder to help lead our efforts. Back home, CF advocates have sent nearly 13,000 email messages and hundreds of calls to Congress, urging Congress to support these priority issues. 

With a pivotal budget deadline approaching, our advocacy work is far from over. Read on to learn more about the Foundation’s efforts and what you can do.   

In early April, the House and Senate agreed to an amended budget resolution, kicking off a Congressional process known as reconciliation. The resolution calls on key committees to propose spending cuts, including $880 billion in cuts from the House Energy and Commerce Committee. While the E&C Committee’s jurisdiction is broad, the Congressional Budget Office confirmed that reaching such savings would require deep cuts to Medicaid, a lifeline for half of children and one-third of adults living with CF who rely on the program to help afford their treatments, medications, inpatient and outpatient care.  

Current proposals to change Medicaid’s financing and structure could eliminate coverage for some people by adding work reporting requirements, rolling back expansion, or restricting the amount of federal funding to states. Ultimately, such changes would threaten access to high-quality, specialized care for people with CF. For example, making work a condition of Medicaid eligibility could result in coverage losses as the ability for people with CF to work can vary over time with changes in health; even those exempt from work would face complex renewal paperwork and burdensome administrative hurdles that often result in lost coverage.   

Congressional leadership hopes to pass a reconciliation package by Memorial Day. As your members consider their next moves, it’s critical that they hear from you about the importance of protecting Medicaid coverage for the CF community.  

Call or email your members of Congress now to oppose harmful cuts in the budget.

The CF story of transformation and progress does not exist as it does today without the work of public health agencies. The NIH and FDA are essential to ensuring all people with CF have a treatment that addresses their underlying mutation – and someday, a cure.  

The Foundation recently urged the Administration to reverse the rapid, large-scale reductions-in-force at key federal agencies over concerns that such abrupt changes could result in loss of critical institutional knowledge and impede future access to lifesaving therapies, care, and resources for the CF community. These cuts, along with the sudden limitation of indirect cost support, threaten to destabilize the CF research community and the United States biomedical research system. 

The CF Foundation is committed to supporting these agencies and preserving their critical roles in furthering scientific research and development, which is essential to our mission. 

You can join our efforts by calling on your members of Congress to ensure the NIH and FDA have the resources and funding needed to support the future scientific breakthroughs the CF community depend on. Take action today! 

Kara Satalino, Connecticut Chapter volunteer and Congressional Captain for CT-01, recently attended President Trump’s Joint Address to Congress as a guest of her Representative, John B. Larson. Through her advocacy, Kara has formed a close relationship with Rep. Larson’s office, resulting in the opportunity to share her family’s CF story and highlight our policy priorities on a national stage. 

Congressional Captain Patty Morris of the Northern New England chapter recently published a letter to the editor in the Lewiston Maine Sun Journal, calling cuts to the NIH and Medicaid a “national medical emergency.” The letter spotlighted Senator Susan Collins (ME) recent signal that she will push back against these cuts and urged fellow lawmakers to do the same. Letters to the editor are one of the most widely read sections of local newspapers – especially by lawmakers – and can be an effective way to make your voice heard in your community and drive members of Congress to take action.   

What to strategize about advocacy opportunities? Email us at [email protected].     

While we’ve been active at the federal level, we are also working in state legislatures nationwide to protect and expand access to care. This includes advocating for full funding of CF state programs, opposing Medicaid work requirements, and prohibiting copay accumulators and maximizers in state-regulated health plans.  

You can find all state-specific actions here, where you can sort by issue area and state.