Dear Honorable Members of the Idaho House of Representatives:
On behalf of the more than 260 people with cystic fibrosis living in Idaho, the Cystic Fibrosis Foundation urges you to oppose H 138, which proposes several harmful changes to the Medicaid expansion program. We are committed to ensuring that the state’s Medicaid program provides critical healthcare coverage for those who qualify and are deeply concerned about provisions that would impose work requirements, an enrollment cap, a 36-month coverage limit, and automatic termination of the Medicaid expansion program if the federal government reduces the enhanced federal matching rate below 90 percent. These policies threaten to strip thousands of Idahoans of vital healthcare coverage, jeopardizing the health of individuals with CF and other serious chronic conditions.
About Cystic Fibrosis and the Cystic Fibrosis Foundation
Cystic fibrosis is a progressive, genetic disease that affects the lungs, pancreas, and other organs. There are close to 40,000 children and adults living with cystic fibrosis in the United States, and CF can affect people of every racial and ethnic group. CF causes the body to produce thick, sticky mucus that clogs the lungs and digestive system, which can lead to life-threatening infections. As a complex, multi-system condition, CF requires targeted, specialized treatment and medications. For those with CF, health care coverage is a necessity, and interruptions in care can lead to irreversible lung damage and costly hospitalizations — compromising the health and well-being of those with the disease. Nearly half of children and more than one third of adults living with CF in Idaho rely on Medicaid for some or all of their health care coverage.
As the world’s leader in the search for a cure for CF and an organization dedicated to ensuring access to high-quality, specialized CF care, the Cystic Fibrosis Foundation accredits more than 130 care centers nationally — including one in Idaho — that provide multidisciplinary, specialized care in accordance with clinical practice guidelines. As experts in CF care, the CF Foundation and our care centers understand the critical role of adequate, affordable health coverage, including through programs like Medicaid.
The Importance of Medicaid Expansion
The Medicaid expansion program plays an important role in helping patients afford the specialized care they need to stay healthy. Expanding Medicaid eligibility to childless adults with incomes up to 138 percent of FPL has allowed the state to extend coverage to nearly 90,000 additional individuals as of December 2024. For people with CF, adequate coverage is not a luxury but a necessity — ensuring access to critical, life-sustaining care and treatments. Consistent care and access to specialized therapies are necessary for people with cystic fibrosis, and any loss or gap in coverage — even for as little as one month — may put people with CF at risk of declining health. As CF is a progressive disease, delaying or forgoing daily therapies has serious implications, including increased risk of lung exacerbations, irreversible lung damage, and costly hospitalizations. The Medicaid expansion program has been crucial in ensuring people with CF can obtain adequate coverage, afford the care they need, and stay healthy enough to stay in the workforce.
Federal Medical Assistance Percentage (FMAP) Trigger Law
We are deeply concerned that H 138 would automatically roll back Medicaid expansion if the federal government reduces its enhanced Medicaid match below 90 percent. This provision creates uncertainty for patients with CF who depend on Medicaid about whether they will lose their coverage and the vital care they need to maintain their health. If enacted, this would strip Medicaid coverage from thousands of people, including many with CF, forcing them to forgo essential medications and medical visits or attempt to shoulder unaffordable out-of-pocket costs. Medicaid must remain a stable and reliable source of coverage, particularly for individuals with chronic conditions like CF who cannot afford interruptions in care.
Medicaid Work Requirements
The Cystic Fibrosis Foundation strongly opposes work requirements as they threaten access to high-quality, specialized CF care for people with cystic fibrosis. Work requirements have been shown to result in widespread coverage losses, increased administrative burdens, and significant financial costs to the state — without achieving their intended goal of increasing employment. This policy contradicts the purpose of Medicaid by restricting coverage rather than expanding access to care, and we fear that people with CF who may lose coverage under this policy could see alarming declines in their health as a result.
While the Cystic Fibrosis Foundation appreciates the decision to exempt from work requirements individuals who are “medically certified as physically or medically unfit for employment,” we still have serious concerns about the administrative challenges someone with CF could face in understanding and navigating these requirements and the exemption process. Arkansas’ program is a prime example of how administrative burdens can jeopardize coverage. The November 2018 Arkansas Works program report shows an overwhelming majority — nearly 80 percent — of those required to log-in and report compliance with the work requirements or request an exemption failed to do so, putting these individuals at risk for loss of coverage. In total, 18,000 people in Arkansas lost Medicaid coverage as a result of the state’s work and community engagement requirements. Similarly, Georgia’s Pathways to Coverage Program, which includes work requirements, enrolled fewer than 5,000 individuals in its first year, instead of the projected 31,000-100,000 beneficiaries originally estimated to be eligible.vi This policy contradicts the goals of the Medicaid program and jeopardizes access to care for thousands of Idahoans.
Moreover, work requirements impose significant financial costs on states. A similar proposal in Michigan was estimated to cost between $17.5 million and $70 million in administrative expenses. In Georgia, over $26 million have already been spent on implementing work requirements, with 90 percent allocated to administrative and consulting costs — funds that could be better used to provide quality, affordable healthcare. Taxpayer dollars should focus on providing quality, affordable healthcare coverage, not cutting it.
Ultimately, these requirements do not help low-income individuals find work. Most people on Medicaid who can work already do so — according to the Kaiser Family Foundation, more than 90 percent of adults with Medicaid coverage are either workers, caregivers, students, or unable to work due to illness. And continuous Medicaid coverage can actually help people find and sustain employment. In a report looking at the impact of Medicaid expansion in Ohio, the majority of enrollees reported that being enrolled in Medicaid made it easier to work or look for work (83.5 percent and 60 percent, respectively). That report also found that many enrollees were able to get treatment for previously untreated health conditions, which made finding work easier. Additionally, a study in The New England Journal of Medicine found that Arkansas’s work requirement was associated with a significant loss of Medicaid coverage, but no corresponding increase in employment. Terminating individuals’ Medicaid coverage for non-compliance with these requirements will hurt rather than help Idahoans search for and obtain employment.
Enrollment Caps and Coverage Limits
We also have serious concerns with the proposed enrollment cap and benefit limit under H 138, as they could leave people with CF without access to vital healthcare. Under this proposal, Medicaid expansion enrollment would be limited to the lesser of 50,000 enrollees or “a total represented by the sum of adults enrolled in Medicaid who are disabled or over 65 years of age,” and individuals could only be enrolled in Medicaid for up to 36 months. People with CF rely on Medicaid for consistent, specialized care, including access to life-sustaining treatments. Medicaid enrollment caps would create a dangerous scenario where eligible individuals could be locked out of coverage due to arbitrary limits. Furthermore, restricting Medicaid coverage to just 36 months fails to recognize the long-term, chronic nature of CF. Individuals who "time out" of Medicaid under this policy would be forced to navigate complex and costly private insurance markets, leaving them at risk of losing access to the treatments that keep them healthy.
Medicaid is designed as an entitlement program, ensuring that all eligible individuals have access to coverage. The core objective of Medicaid, as outlined in federal law, is providing medical assistance to those in need. Enrollment caps and benefit limits fundamentally contradict this principle by restricting access to coverage based on external factors rather than individual need. CMS has historically rejected enrollment caps on the basis that they do not further the objectives of the Medicaid program because they limit coverage on a first-come, first-served basis and delay or deny coverage for otherwise eligible individuals. Limiting enrollment and imposing benefit limits would create coverage disruptions, increase churn, and ultimately reduce access to care for those in need.
The Cystic Fibrosis Foundation urges you to oppose H 138, as this policy does not further the goals of the Medicaid program.