On behalf of the Cystic Fibrosis Foundation, we submit the following statement for the record expressing our grave concern and strong opposition to the proposed deep cuts to the Medicaid program outlined in the budget reconciliation package. These proposed changes will result in loss of access to lifesaving therapies and care for the cystic fibrosis community — making some people with CF sicker and potentially leading to premature death. We urge the Committee to reject the harmful Medicaid cuts being considered.
Importance of Medicaid to the CF Community
For people with CF and their families, Medicaid is a lifeline.
- “My 12-year-old son, Matthew, has cystic fibrosis and eosinophilic esophagitis. He also cannot tolerate modulators, meaning he continues to battle serious infections and frequent hospitalizations. In 2018, my husband's insurance switched, and we were suddenly told that all Children's Wisconsin providers were out of network — meaning we could no longer see his established specialists in ENT, GI, or Allergy, nor could we use Children's for lab work and scans. The logistical and financial burden was overwhelming. With the CF clinic’s support my son was accepted to Wisconsin’s Katie Beckett Medicaid program. The process of qualifying is exhaustive. The paperwork is extensive, and it even includes a home visit. Frankly, I couldn’t ‘cheat the system’ even if I wanted to — it was that rigorous. This program has been a lifeline — not only reducing our out-of-pocket costs but also easing the nightmare of coordinating care across multiple providers. We are just middle-class people living in the suburbs doing our best to take care of our family. I truly don’t know what we’ll do if our son loses access to Medicaid.” – Laura Drummond, Wisconsin
- “My eight-year-old son, Edward, is living with cystic fibrosis. He has primary insurance through my husband's work and also receives Medicaid as a secondary insurance. He was born two months premature and spent nine weeks in the NICU. This was his first of many hospital stays and also included an emergency surgery at 36 hours old to save his life. I had a doctor look me in the eyes and tell me he didn’t know if my son was going to survive the night. I performed CPR on my son while I waited for the code team to come into his room. I am still dealing with the trauma from the first two months of his life, the one thing I am not dealing with is medical debt specifically because of Medicaid. Before Medicaid, the bill I received from the hospital was over $750,000. After Medicaid, I paid $500. Medicaid has saved our family.” – Julie Klima, Michigan
These are just some examples of how the CF community utilizes this essential program and could be negatively impacted by the proposed cuts to Medicaid. For more real-world examples, please see the attached appendix of testimony provided by members of the CF community.
About Cystic Fibrosis and the Foundation
Cystic fibrosis is a rare genetic disease that affects nearly 40,000 people and can affect every racial and ethnic group in the United States. In people with CF, mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene result in a buildup of thick mucus in multiple organ systems, leading to lung damage, life-threatening infections, and other complications. To facilitate the development of CF therapeutics, the CF Foundation is engaged in virtually every element of the research and development process, from preclinical discovery and identification of new therapeutics to conducting clinical trials and post-marketing surveillance.
Through the successful development of multiple transformative therapies and careful, aggressive, and continuously improving disease management over several decades, the average life expectancy for people with cystic fibrosis has risen dramatically. These gains reflect over 50 years of focused work to improve CF treatments, develop evidence-based standards of care, and encourage adherence to a lifetime of chronic care. However, this system of care and the improvements in length and quality of life for those with CF can only be realized if patients have access to essential care and services.
Medicaid and CF
Medicaid is a crucial source of health coverage for people living with CF; half of all children and one-third of adults across the country rely on Medicaid for some or all their health care coverage. Many people with CF use Medicaid to supplement private insurance they receive from their employer or the marketplace. Others may receive Medicaid and Medicare benefits simultaneously.
Since CF is a progressive disease, access to consistent care and specialized therapies is essential. Gaps in Medicaid coverage — even for as little as one month — may put people with CF at risk of declining health, including increased lung exacerbations, irreversible lung damage, and hospitalizations. Medicaid coverage is a lifeline for many people with CF. The proposed cuts to Medicaid could decimate this crucial program that the CF community relies on.
All policies outlined below and in the proposed budget would cause people to lose coverage, reduce services to patients, increase state and enrollees’ costs, and destabilize the Medicaid program. States already struggling in a difficult budgetary environment would be forced to make deep cuts to Medicaid, with the Congressional Budget Office estimating 13.7 million eligible individuals will lose coverage, including members of the CF community.
Burdening Patients with More Costs and More Paperwork
Increasing costs, red tape, and paperwork for people with CF who are eligible for Medicaid contradicts the core mission of the program. These proposed policies will not reduce fraud, waste and abuse, but rather are a solution in search of a problem — imposing crushing bureaucracy on patients and families who are already heavily burdened, leading to worse health outcomes, increased medical debt, and strains our healthcare system.
Community Engagement and Work Reporting Requirements
Evidence has consistently demonstrated that requiring Medicaid enrollees to provide proof of employment leads to widespread coverage losses, increased administrative burdens, and significant financial costs to the state — without achieving the intended goal of increasing employment. In addition, 91% of Medicaid enrollees are workers, students, caregivers, or individuals who are not working due to illness or disability. States that have tried to implement this policy fail in achieving Medicaid’s core mission to provide health coverage for eligible individuals. In Arkansas, more than 18,000 Medicaid enrollees lost coverage in the nine-month period during which the work requirement was in effect. Many Medicaid enrollees found the reporting process confusing or inaccessible, and people who lost coverage reported delaying care and skipping medications because of costs, as well as incurring serious medical debt. In Georgia’s newly enacted Pathways to Coverage program, work requirements only apply to people newly eligible for Medicaid. In the first year, only 4,231 people enrolled in Medicaid through the program, well below the projected 100,000 enrollees. Unlike other proposals, Georgia’s work requirement policy does not systematically exempt populations, and research shows that the state’s stringent requirements for documenting and reporting work hours contributed to the low enrollment numbers.
The ability for people with CF to work can vary over time with changes in health. While people with chronic illnesses like CF may be exempt from work requirements, we know exemptions for people with disabilities and caregivers often do not work. Exemptions may not happen automatically and can require complex paperwork (which may include documentation from a health professional determining the individual is “physically or mentally unfit for employment”) and regular recertifications even for those with chronic life-long conditions. Individuals risk losing coverage if there are administrative errors or their application is not completed or processed in time. As a result, eligible individuals, like people with CF who qualify for an exemption, will be improperly disenrolled, which could lead to accumulating medical debt or cutting back on necessities like food and rent.
Work reporting requirements are simply a means to deliver budgetary savings by terminating eligible peoples’ health care. We strongly urge the Committee to reject this proposal.
Cost-Sharing Requirements
Research shows requiring Medicaid enrollees to pay premiums or other cost-sharing requirements create barriers to care and coverage, lead to higher disenrollment, and are not associated with substantial cost savings. Instead, these types of monetary penalties on the most vulnerable populations are a blunt tool to shape health care seeking behavior.
Data from states that have nominal premiums and cost-sharing requirements in place indicates that many enrollees have faced an array of consequences for failure to pay premiums, including loss of coverage. In those states, many enrollees reported that their premiums were unaffordable. In Indiana, from February 2015 through November 2016, nearly half of those eligible to pay premiums with incomes below 100% federal poverty level (FPL) were moved from the comprehensive to the more limited benefit package due to failure to pay (286,900 individuals in total). In Montana, about a quarter of premium eligible enrollees (1,800 individuals) lost coverage due to nonpayment of premiums in 2019. In Iowa, those individuals disenrolled for failure to pay premiums, 44% became uninsured and 31% stated their health had declined following coverage termination.
Adding to the significant cost burden already experienced by people with CF could cause them to delay or skip treatments. According to a 2024 study conducted by the Cystic Fibrosis Foundation and Dartmouth College, over a third of people living with CF delayed or went without at least one aspect of their CF care in the last year — including skipping medication doses, taking less medicine than prescribed, delaying filling a prescription, or skipping a treatment altogether — due to cost concerns. As part of the CF Care model, patients have quarterly visits with their care team — which may include appointments with physicians, nurses, respiratory therapists, dieticians, social workers, physical therapists, mental health providers, and genetic counselors. If a state imposes a $35 copayment per service per visit, it may lead to patients skipping appointments, seriously jeopardizing their health and leading to costly hospitalizations and fatal lung infections.
We urge the Committee to reject this proposal.
Eliminating Coverage and Benefits through Finance Restructuring
Any proposed restructuring of the federal contribution to Medicaid is simply shifting costs to states they cannot maintain. Unlike the federal government, most states are required to maintain a balanced budget, so federal Medicaid funding cuts under consideration will require states to cut eligibility and reduce benefits for workers with low incomes, children, seniors, and people with disabilities.
States are only required to cover a limited number of mandatory benefits. Many benefits people with CF and their families rely on are optional and jeopardizing these benefits would be devastating for the CF community. These optional benefits include, but are not limited to:
- Prescription Drugs: Recent therapeutic advances have transformed cystic fibrosis — adding decades of life and new hope for people living with this life-threatening disease. On average, people with CF rely on three oral and three inhaled prescription medications daily. This treatment regimen can be expensive even for individuals with comprehensive insurance. For many, Medicaid is a lifeline to ease that financial burden.
- Medical Equipment and Supplies: People with CF use a high-frequency chest wall oscillation vest to help loosen the thin mucus in their chest wall, making it easier to clear the airways. Vest treatments can be used twice a day, or more, based on physician recommendations. These vests can be very expensive without the support of Medicaid.
- Over-the Counter Products: People with CF often require vitamin supplements, particularly fat-soluble vitamins A, D, E, and K, due to malabsorption caused by pancreatic insufficiency. In addition, in order to gain and maintain a healthy weight, people with CF need up to twice the amount of daily calories as others who are of similar age and weight. In some cases, nutritional supplements may be recommended by a CF dietitian as the best way to boost calories. Some states cover these over-the-counter products through their Medicaid program, removing one more barrier for individuals with CF to live a full and healthy life.
Without access to these benefits, people with CF will struggle to cover their full cost of care.
Converting Federal Finance to Per Capita Caps
Shifting from an open-ended program to a capped program would fundamentally change Medicaid. Whether to the entire program or to only the expansion population, these financing mechanisms would dramatically cut Medicaid. For nearly 60 years, the federal government and states have shared Medicaid costs, based on actual state health care spending, not a preset formula. These caps fail to account for any unexpected cost growth such as from another public health emergency or a new, breakthrough drug therapy, which would make the federal funding cuts even larger than anticipated. Under both a per capita cap and block grant models, the federal government would step away from the role it has played, abandoning states trying to support the most vulnerable populations.
Reducing Provider Taxes
Medicaid is jointly financed by the states and the federal government, and states have the flexibility in how they 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 their Medicaid program – helping cover the Medicaid expansion population, support important benefits for a person with CF like nutritional supplements, and sustain rural safety-net providers. Freezing provider taxes and eliminating the option for states to account for unforeseen expenses will force states to deeply cut Medicaid eligibility and services.
Shrinking Federal Medical Assistance Percentage
Reducing the 90% federal medical assistance percentage (FMAP) match rate for Medicaid expansion to each state’s regular Medicaid match rate would cause immense financial strain to make up the difference. For traditional Medicaid population, FMAP rates vary by state and are largely based on each state’s per capita income. The statutory minimum FMAP contribution is 50%, but it can provide up to a statutory maximum of 83% for lower-income states. The Congressional Budget Office estimates that in response to cutting the Medicaid matching rate, no states would opt to newly expand Medicaid, and some would drop expansion completely. Moreover, research shows with such a financial burden, states would be forced to raise taxes or cut Medicaid coverage for some groups entirely.
Furthermore, several states have “trigger laws” tied to the FMAP. In Arizona, Arkansas, Illinois, Indiana, Montana, New Hampshire, North Carolina, Utah and Virgina, lawmakers are required to end expansion if the FMAP drops below 90%. New Mexico, Iowa, and Idaho have provisions requiring legislative review and reconsideration of expansion if the FMAP is reduced. Should this happen, millions of individuals will lose coverage. If Medicaid coverage were to return to pre-expansion levels, approximately 7.5% of all adults with CF will lose Medicaid coverage immediately.
These budget-driven barriers will lead to fewer enrollees, disruption in treatments, and worse health outcomes. We urge the Committee to reject these cuts to Medicaid.
We are deeply concerned the proposed budget reconciliation language will lead to unsustainable cuts to Medicaid — endangering essential care for the CF community. Cystic fibrosis is widely recognized as one of the best stories in medicine. CF has been transformed from a fatal childhood disease to one where the adult CF population is larger than the pediatric population. Medicaid coverage is an essential aspect of this story; without coverage for the complex care the disease requires, none of these advancements are possible. We urge the Committee to reject these reckless cuts and to prioritize the health of all Americans by maintaining the federal government’s commitment to this vital program.