The Cystic Fibrosis Foundation issued the following statement in response to the bills released by the House Energy and Commerce Committee and the House Committee on Ways and Means.
“The bills released by the two House committees this week fail to adequately protect people living with cystic fibrosis and place the lives of millions of Americans living with serious and chronic diseases at risk.
“The CF community has come so far in the fight against this deadly disease, and it's crucial that this progress is not jeopardized by inadequate, unaffordable health care coverage. At a time when advances in CF care are more promising than ever, these measures could restrict our community's access to existing therapies as well as new treatments as they become available.
“In particular, we are concerned that:
- The legislation would effectively eliminate Medicaid expansion and alter its financing structure in a way that would put coverage of new and innovative treatments at risk. Medicaid provides a critical source of health care coverage for half of children and a third of adults with CF. We must preserve this safety net by retaining expanded eligibility and ensuring adequate funding for Medicaid.
- The bills do not support an individual market that works well for people with intensive health care needs, including people with CF. By providing states with funds that could be used for a wide range of activities -- including high-risk pools, reinsurance, provider payments and programs to promote access to preventive services -- these bills offer no assurance that, regardless of where they live, people with CF will be able to purchase an adequate, affordable plan in the individual insurance market.
- The legislation inadequately supports young people with high health care needs by basing financial assistance primarily on age rather than income. This could leave younger individuals with CF without enough support to purchase a plan that covers the breadth of their specialty care. This is particularly important for our community, as 75 percent of people with CF are younger than age 30.
“We commend lawmakers for not exposing patients to higher premiums based on their health care status when they have a gap in coverage, as was put forward in other proposals. On behalf of the CF community, we urge members of Congress to protect and address the needs of people with cystic fibrosis, a life-threatening disease. We look forward to working with members of Congress as they continue to refine this legislation and will evaluate any bills through the lens of our policy principles.”