Dear Director Corcoran:
The Cystic Fibrosis Foundation appreciates the opportunity to comment on the Ohio Group VIII 1115 Waiver and writes to express serious concerns about the state’s proposed work requirements. On behalf of the more than 1,700 people with cystic fibrosis living in Ohio, we are committed to ensuring that the state’s Medicaid program provides quality and affordable healthcare coverage. Based on experience with similar policies in other states, we fear these requirements will lead thousands of people to lose coverage and jeopardize the healthcare of people with CF and other serious and chronic conditions. Recognizing that HB 33 directs the state to request approval from the Centers for Medicare and Medicaid Services (CMS) to implement Medicaid work requirements, we offer the below comments in opposition to this proposal.
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. Over half of children and 40 percent of adults living with CF in Ohio 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 seven in Ohio — 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 need for access to adequate, affordable health coverage, including through programs like Medicaid.
Medicaid Work Requirements Jeopardize Access to Care
Ohio’s proposed work requirements threaten access to high-quality, specialized CF care for people with cystic fibrosis. Under the application, adults under 55 must be employed or meet other criteria to maintain Medicaid eligibility. One major consequence of this proposal will be to increase the administrative burden on individuals in the Medicaid program. The state intends to rely on data matching, but there will undoubtedly be individuals whose data is incomplete, outdated, or not accurately captured by the systems in use. For example, during the unwinding of the Medicaid continuous coverage requirements, only 47% of enrollees in Ohio were automatically re-enrolled, demonstrating the significant gaps in data matching and the increased administrative burden many people will face. Furthermore, the proposal does not specify how individuals can demonstrate compliance or address inaccuracies when data sources fail to verify their eligibility.
As the state itself acknowledges, this administrative burden will lead to significant coverage losses. When Arkansas implemented a similar policy requiring Medicaid enrollees to report their hours worked or their exemption, the state terminated coverage for over 18,000 individuals before a federal court halted the policy. 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. Ohio has already estimated that approximately 61,826 currently eligible enrollees may lose eligibility under the new requirements. This policy contradicts the goals of the Medicaid program and jeopardizes access to care for thousands of Ohioans.
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 by forcing them to forgo daily therapies due to cost. According to a 2024 study conducted by the Cystic Fibrosis Foundation and the Dartmouth Institute, over a third of people with CF delayed or went without at least one aspect of their CF care in the last year — including but not limited to skipping medication doses, taking less medicine than prescribed, delaying filling a prescription, or skipping a treatment altogether — due to cost concerns. Because CF is a progressive disease, patients who delay or forgo treatment face an increased risk of lung exacerbations, irreversible lung damage, and costly hospitalizations.
The CF Foundation is also concerned that the proposed exemption criteria may not capture all individuals with, or at risk of, serious and chronic health conditions that prevent them from working. The proposal does not clearly define what qualifies as "intensive physical health care needs or serious mental illness” and fails to account for individuals with chronic conditions who have some capacity to work but may still face substantial health challenges. For instance, the ability of people with CF to work can vary 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 a period of time — which may not always be apparent through the state’s proposed data matching process. This lack of clarity around what conditions qualify for an exemption, and the inability for enrollees to self-attest whether they are capable of working, creates greater risk of disenrolling vulnerable populations from coverage.
Additionally, the Foundation is concerned by the cost of this waiver’s implementation. A similar work reporting requirements proposal in Michigan had estimated administrative costs between $17.5 million and $70 million. In Georgia, over $26 million has been spent within a year of implementing the Georgia Pathways to Coverage Program, despite the low enrollment, and it is estimated that 90% of this was for administrative and consulting costs. Taxpayer dollars should focusing on providing quality, affordable health care coverage, not cutting it.
Ultimately, these requirements do not further the goals of the Medicaid program or 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% 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 Ohioans search for and obtain employment.
Thank you for the opportunity to provide comments on the Ohio Group VIII 1115 Waiver. The Cystic Fibrosis Foundation remains opposed to work requirements, as this policy does not further the goals of the Medicaid program.