The CF Foundation Urges Congress to Prioritize Access to Care in Debt Ceiling Package

Proposed policies would impose significant barriers and add burden for people with CF

April 26, 2023 | 3 min read

BETHESDA, Md. — This week, the U.S House of Representatives is considering legislation in the debt ceiling package that would increase paperwork, imposing significant barriers and added burden for the cystic fibrosis community. In response to currently proposed policies, the Cystic Fibrosis Foundation has issued the following statement urging Congress to prioritize access to essential health care:

The CF Foundation opposes any policies in the upcoming debt ceiling package that jeopardizes health care coverage and access for people with cystic fibrosis

We strongly urge Congress to protect Medicaid, a vital source of coverage for half of children and one-third of adults with CF. We oppose any barriers that might prevent people with CF from accessing the specialized, high-quality care they need.

The evidence is clear that Medicaid work requirements are not about work, rather they’re about paperwork. Making work a condition of Medicaid eligibility could threaten access to care for people with CF, as their ability to work can vary over time with changes in health status. Declines in health status due to pulmonary exacerbations, infections, and other events are common and can take someone out of the workforce for significant periods of time. The added administrative burden of navigating these proposed requirements can also lead to confusion for beneficiaries, even those who are exempt from the work requirements, and cause them to lose health care coverage.

The proposal also includes another threat to public health: The REINS Act. Under the REINS Act, Congress would need to re-approve critical protections for public health, safety, and health care measures that have already been authorized in current law and implemented by authorized agencies such as the Centers for Medicare and Medicaid and the U.S. Food and Drug Administration. If passed, the REINS Act would undermine the expertise of these long-standing institutions and unilaterally weaken the implementation of public health and safety standards meant to protect millions of Americans.

The CF Foundation strongly opposes these policies that undermine protections, coverage, and access to specialized care and treatments vital to living with a chronic condition and urges Congress to prioritize the needs of all patients, including people with cystic fibrosis.

About the Cystic Fibrosis Foundation

The Cystic Fibrosis Foundation is the world's leader in the search for a cure for cystic fibrosis. The Foundation funds more CF research than any other organization, and nearly every CF drug available today was made possible because of Foundation support. Based in Bethesda, Md., the Foundation also supports and accredits a national care center network that has been recognized by the National Institutes of Health as a model of care for a chronic disease. The CF Foundation is a donor-supported nonprofit organization. For more information, visit

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Katie Haswell
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