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 —  income, disability status — or participate 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 lead to delaying or forgoing care, which puts people with CF at risk of declining health. Among other problems, they could experience more lung exacerbations, irreversible lung damage, and hospitalizations. Medicaid coverage is a lifeline for many people with CF, and proposals to change the program must not disrupt access to critical care.

Policy Proposals That Threaten Access to Medicaid

As lawmakers consider changes to Medicaid, some proposals would threaten access to Medicaid for people with CF, including administrative burdens, changes in how the federal government finances Medicaid, and cuts to Medicaid expansion. 

Administrative Burdens and Out-of-pocket Costs

• Work reporting requirements would make people show proof of employment to enroll in Medicaid. This policy has been shown to result in widespread coverage losses, increased paperwork and other administrative burdens, and costs the state a lot of money — without increasing employment.
  
  For instance, in Arkansas, 18,000 people lost their Medicaid coverage when the state implemented work reporting requirements. Nearly all these individuals were already working or qualified for an exemption, but they lost coverage because the reporting system was difficult to navigate.
  
  The ability for people with CF to work can vary over time with changes in health. Although people with chronic illnesses such as CF may be exempt from work requirements, exemptions may not happen automatically and often require complex paperwork and annual certifications. Individuals risk losing coverage if they are unable to meet the requirement, encounter administrative errors, or their application is not completed in time.
• Changes to cost-sharing requirements would raise health care costs for Medicaid enrollees and could lead to lost coverage. Currently, states can charge some Medicaid enrollees premiums or copays for certain health services. Some proposals would add more costs through premiums or other cost sharing, making coverage unaffordable for low-income enrollees. Research shows this could lead individuals to cut back on necessary medical services or lose coverage altogether.

Financing Changes

• Block grants and per capita grants are two commonly proposed financing structures that, if enacted, would replace the federal government’s policy to fund states based on actual program costs.
  • Block grants would fund the state’s Medicaid program at a fixed annual payment
  • Per capita grants would assign a fixed dollar amount per Medicaid enrollee

Under both policies, the payments to states would be capped, restricting a state’s flexibility to address changes to its Medicaid program. States would need to cover any increased costs by making up the difference with their own funds. As a result, states will be forced to cut services or simply disenroll people — putting people with CF at risk of losing access to care and treatments.

• Provider taxes help states finance their share of Medicaid costs. States rely on a number of funding sources, including dedicated taxes, funding from local governments, and taxes on health care providers. Every state, except Alaska, uses provider taxes to help fund its Medicaid program. Proposals restricting or eliminating provider taxes would force states to deeply cut Medicaid eligibility and services.

Cuts to Medicaid Expansion

• Decreasing federal funding or capping enrollment for the 41 states and Washington, D.C., that have expanded Medicaid eligibility would endanger Medicaid coverage for individuals covered through expansion. This includes individuals who earn up to $21,597, equal to 138% of what’s known as the 2025 Federal Poverty Level, an annual income threshold set by the government to determine eligibility for certain government programs, such as Medicaid. Reducing the federal government’s contribution (currently 90%) or limiting enrollment would strain state budgets and could result in significant coverage losses. Some states have laws in place to end Medicaid expansion if the federal contribution is lowered.

The Foundation’s Position

Medicaid is a vital source of coverage for the CF community, and the Foundation opposes policy proposals that could eliminate access to Medicaid for people with CF and their families, jeopardizing access to essential health care. We urge lawmakers to put patients and their families at the center of the conversation when evaluating Medicaid reforms to ensure people with CF have consistent, affordable health coverage.