Dear Director Portman:
The Cystic Fibrosis Foundation appreciates the opportunity to submit comments on the Georgia Pathways to Coverage Demonstration Extension Request. Our organization is committed to ensuring that Georgia’s Medicaid program provides quality and affordable healthcare coverage. Unfortunately, the Pathways to Coverage Program has failed to extend coverage to thousands of people while costing the state millions of dollars to administer. The CF Foundation strongly urges the state to discontinue the Pathways to Coverage Program and instead proceed with full Medicaid expansion to cover people up to 138% of the federal poverty level without additional administrative and financial barriers to care.
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 — including more than 900 in Georgia — 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 five adults living with CF in Georgia 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 Georgia — 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.
Enrollment
The Pathways to Coverage Program is only reaching a small fraction of the estimated 359,000 individuals who could potentially be eligible for coverage under Medicaid expansion. Georgia’s new projected enrollment estimate of 30,271 enrollees by demonstration year 10 represents only about 17% of the potentially eligible population under the poverty line. The CF Foundation urges the state to fully expand Medicaid and ensure access to care for the thousands of Georgians who fall into the current coverage gap.
Closing the coverage gap helps people with CF access the comprehensive health care coverage that they need. 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. Medicaid expansion 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.
Furthermore, we are concerned by how the state has managed the cost of implementing the Georgia Pathways to Coverage Program. As of March 2024, over $26 million has been spent on implementing the Georgia Pathways to Coverage Program, and it is estimated that 90% of this was for administrative and consulting costs. Redirecting these resources toward expanding coverage options and addressing barriers to enrollment could enhance program effectiveness and better serve eligible populations.
Barriers to Coverage
The Pathways to Coverage Program continues to include work reporting requirements. Patients would need to confirm compliance with an 80-hour per month requirement at application and annual renewal and could be subject to periodic audits as well. These requirements are not about work, they are about paperwork, and they will prevent individuals from accessing or maintaining their healthcare coverage.
While the state proposes to include caregiving for children six and under as a qualifying activity, the CF Foundation remains concerned that that the current criteria are too narrow and prevent Georgians from accessing care. For example, these criteria do not account for individuals with, or at risk of, serious and chronic health conditions that prevent them from working. Many other individuals with chronic conditions have some capacity to work but may still face substantial health challenges that require consistent coverage to manage their condition. 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.
Ultimately, work reporting 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% and 60%, 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. The Foundation urges Georgia to remove work reporting requirements from the Pathways to Coverage Program.
Reduced Benefits
The Cystic Fibrosis Foundation is concerned by Georgia’s continued waiver of non-emergency transportation (NEMT) for this population. The NEMT benefit facilitates access to care for individuals who overwise may not have a reliable, affordable way to get to and from medical appointments. This benefit is most often utilized by eligible Medicaid members requesting a ride to their medical appointment or the pharmacy. According to a 2024 study conducted by the Cystic Fibrosis Foundation and the Dartmouth Institute, 20% of people with CF that delayed their care in some way in the past year cited cost of transportation as one of the reasons that contributed to the delay. NEMT benefits help ensure that enrollees do not delay or forego care due to transportation costs. Continuous, uninterrupted care is especially important for individuals with CF due to the progressive nature of the disease, as disruptions in care can lead to irreversible lung damage, costly hospitalizations, and early death.
Finally, we are concerned by the proposal’s continued waiver of employer-sponsored insurance (ESI) wraparound benefits. Under the current proposal, individuals are required to enroll in ESI if it is available and determined to be cost effective for the state. However, the state does not provide any wraparound services for individuals regardless of the benefit package in their ESI. This means that if a patient’s ESI does not cover important treatments for a chronic health condition, he or she will have no options to receive more comprehensive coverage. Additionally, the state does not help individuals with the costs of coinsurance or deductibles required in their ESI. Without this assistance, people with CF may be unable to afford routine care center visits or their life-sustaining medications.
The Cystic Fibrosis Foundation remains opposed to work reporting requirements in all forms, as they do not promote employment and are not in line with the goals of the Medicaid program. We urge Georgia to discontinue this program and instead implement full Medicaid expansion, enabling thousands of Georgians to access necessary care.