Medicaid is a health care program funded jointly by the federal government and state governments. The program provides free or low-cost health care coverage for people meeting certain criteria — such as income and disability status — or participating in state-specific programs.  

"Without Medicaid, we would not be able to afford the astronomical cost of our son’s medications which cost over three times our yearly income. It would also interfere with his care, as we would not be able to afford regular clinic visits." — Amity, parent of a child with CF from Virginia

Why Medicaid Is Important to People With CF

Medicaid is a crucial source of insurance for people living with cystic fibrosis; half of all children and a third of adults rely on Medicaid for some or all their health care coverage. Many people with CF use Medicaid to supplement employer or marketplace insurance. Others may receive Medicaid and Medicare benefits simultaneously.

"I am a stay-at-home mom to our 2-year-old child with CF and his 4-year-old sister, while my husband works. Without Medicaid, we would be drowning in medical debt. Having Medicaid as secondary insurance helps us keep our heads above water financially. There is already enough stress having a child with medical needs, the financial aspect shouldn’t add to it." — Grace, parent of a child with CF from Pennsylvania

Because cystic fibrosis is a progressive disease, access to consistent care and specialized therapies is essential. Gaps in coverage can force people with CF to delay or forgo care, putting them at risk of declining health. Among other problems, they could experience lung exacerbations, irreversible lung damage, and hospitalizations. 

Federal Medicaid Legislation

In 2025, federal lawmakers passed sweeping legislation that will result in restricted Medicaid access and more administrative burdens for enrollees. The most critical changes to Medicaid are:

• Limits to Medicaid funding in certain states beginning in 2028. The law caps certain state funds used to finance Medicaid. As a result, states will have to make up the funding shortfall with other revenue sources or make cuts to the program, which could include limiting benefits, adding cost-sharing or enrollment barriers, or reducing provider reimbursement rates.
• Work reporting requirements for certain adults by the end of 2026. The law will create additional administrative burdens, with new requirements for certain adult Medicaid enrollees to report work or community engagement activities as a condition of their eligibility or qualify for an exemption. This may result in people losing coverage if they fail to adequately document their work hours or obtain an exemption. The legislation also requires certain adult Medicaid enrollees to renew their coverage every six months, rather than annually.
• New cost-sharing for some adults beginning in October 2028. The law requires some adults enrolled in Medicaid to pay up to a $35 co-pay for most health care services.

The Foundation’s Position

Medicaid is a vital source of coverage for the CF community, and the Foundation opposes policies that make it harder for people with CF and their families to access their essential health care. We urge lawmakers to put patients and their families at the center of the conversation when considering policies that affect Medicaid access, ensuring people with CF have consistent, affordable health coverage.