Dear Director Pitman:
The Cystic Fibrosis Foundation appreciates the opportunity to submit comments on the ARHOME Pathway to Prosperity Amendment. On behalf of the more than 330 people with cystic fibrosis (CF) living in Arkansas, we are committed to ensuring that Arkansas’s Medicaid program provides quality and affordable healthcare coverage. Our organization is strongly opposed to Arkansas’s complex new demonstration amendment, which includes both work reporting requirements and time limits for Medicaid beneficiaries. These requirements could take away coverage from thousands of people in Arkansas and jeopardize the health of people with cystic fibrosis (CF) and other serious and chronic conditions. The CF Foundation urges Arkansas not to move ahead with 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 more than one in three adults living with CF in Arkansas 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 two in Arkansas — 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.
Barriers to Coverage
The ARHOME Demonstration seeks to implement complex new requirements for adults and parents enrolled in Medicaid expansion with incomes up to 138% of the federal poverty level (FPL). These requirements add significant red tape for patients that jeopardizes their access to care, and the Cystic Fibrosis Foundation opposes them. The vast majority of those with Medicaid who can work already do so; nationally, 92% of individuals with Medicaid coverage under age 65 who do not receive Social Security disability benefits are either workers, caregivers, students, or unable to work due to illness. The detrimental effects that these requirements have on patients are not consistent with the goals of the Medicaid program.
Under the Arkansas’s proposal, individuals with very low incomes or that have been on Medicaid for a specified number of months will be assigned a success coach. These coaches will create personal development plans, and those who are not on track toward these goals, based on the assessment of the success coach, are at risk of having their health plan benefits suspended. Though this proposal states that individuals who are suspended will not be disenrolled from the Medicaid program, it appears that benefits and healthcare services would be stopped, barring enrollees from accessing care until the suspension is lifted. The state estimates that one in four enrollees will have their coverage benefits suspended. 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.
Additionally, the state intends to identify the individuals to be assigned to success coaches based on the length of time they have been enrolled in the program, targeting those at 21-80% of the FPL who have been enrolled in Medicaid for 24 months or more and those at 81-138% of the FPL enrolled for 36 months or more. An Arkansas resident with one dependent working a full-time, minimum wage job ($11/ hour) would still be under 138% of the FPL. 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. This policy fails to recognize that many people with chronic conditions, like those with CF, are enrolled in Medicaid over the long-term and attempts to create a time limit on enrollment for some enrollees. Again, this structure is not consistent with the goals of the Medicaid program.
Challenges of Implementation
The Cystic Fibrosis Foundation is concerned that implementation of the proposed requirements will pose challenges for the program and enrollees alike. The proposed activities of success coaches are complex and time-consuming. The proposal would require significant infrastructure and investment to be implemented as proposed, including enhancing data sources and hiring and training staff. Furthermore, it is unlikely that the state has sufficient resources to support a three-person panel to review all success coach recommendations. There are significant costs and administrative disruption for implementing a new infrastructure to this extent.
Our organization is further concerned by the proposal’s use of data matching to assess individuals’ needs for support. While the state does not intend to solely rely on data matching, it does not specify what other assessments would be used. Arkansas’s previous attempt to implement work requirements in 2018 revealed significant flaws in the state’s ability to use data to identify exemptions, ultimately leading to 18,000 individuals losing coverage largely as a result of bureaucracy and additional paperwork. During Arkansas’s recent Medicaid renewal process, only 42% of enrollees were successfully renewed through automated data matching, with an additional 18% renewed through submitted renewal forms, demonstrating the limitations of data matching. There will undoubtedly be individuals whose data is incomplete, outdated, or not accurately captured by the systems in use. Additional processes to determine patient eligibility and participation in program requirements inherently create opportunities for administrative errors that jeopardize access to care, and the CF Foundation is concerned that this proposal will increase administrative burden on these patients.
In addition, the Foundation is concerned that this proposal does not specify how individuals can demonstrate compliance or address inaccuracies if existing data fails to verify their eligibility. There is no clear reporting process to ensure that eligible individuals are not unfairly disenrolled due to gaps in data.
Lack of Detail
The Cystic Fibrosis Foundation is concerned that Arkansas’s proposal is lacking key details that prevents commenters from providing meaningful input on the proposed changes. The proposal states that enrollees who are suspended for noncompliance would maintain Medicaid enrollment while their health plan benefits and services are suspended. This distinction between remaining enrolled but losing coverage is misleading to commenters and beneficiaries about the availability of care. The state fails to clarify whether suspended individuals would be transferred to fee-for-service coverage while their health plan status is suspended or if suspension would mean loss of all coverage. Furthermore, the proposal does not provide clear qualifications or training requirements for success coaches, despite the many services they will be expected to provide. Finally, Arkansas’s proposal does not establish clear criteria for determining when an enrollee is on track with their personal development plan, leaving this to the discretion of success coaches without consistent standards. We urge the state to clarify these points and reissue the proposal for another comment period of at least 30 days.
Conclusion
The Cystic Fibrosis Foundation remains opposed to work reporting requirements and time limits on coverage in all forms, as they are not in line with the goals of the Medicaid program. The ARHOME Pathway to Prosperity Amendment threatens the continuity of care for patients, places undue administrative burden on patients and the Medicaid program, and lacks critical details. In order to protect access to affordable and quality healthcare for Arkansans, we urge the state not to move ahead with this proposal.