(379) When Insurance Doesn’t Cover It: Advocating to Protect State CF Programs

Background: While nearly all people with CF are insured and many rely on multiple forms of coverage, most still experience gaps in coverage and high costs [1]. According to a survey of more than 1,800 people with CF, even with the help of financial assistance (74%), nearly half reported delaying or forgoing care due to cost concerns in 2019 [2]. Several states offer safety-net programs to people with CF that act as payers of last resort by reimbursing enrollees for services not covered by other forms of insurance. Three programs – Maine’s Children with Special Health Needs Assistance Program, New Jersey’s State Organization of Cystic Fibrosis, and New York’s Adult Cystic Fibrosis Assistance Program – have seen recent cuts to their funding, eligibility, or services, or were eliminated entirely, jeopardizing the ability of people with CF to access and afford their care and treatment. In 2021, the CF Foundation’s Policy and Advocacy team bolstered its efforts to protect, strengthen, and restore these programs.

Methods: To better understand the impact of cuts and support our advocacy, we collected stories through grassroots campaigns and direct outreach to patients and CF providers. Policy and Advocacy staff engaged legislative offices and health department officials across the three states, holding a total of 24 meetings and sending five comment letters highlighting the value of these programs, signed by 34 CF care center directors. Online grassroots campaigns in New York and Maine resulted in 1,330 messages from more than 420 constituents to their lawmakers. In Maine, we helped draft legislation that would restore previously cut services and eligibility to its program and coordinated testimony from 15 community and care team members. Freedom of Information Act (FOIA) requests in Maine and New York yielded utilization data and demonstrated the community’s reliance on their respective programs.

Results: As a result of our advocacy, New Jersey’s program saw a $200,000 (83.6%) funding increase, allowing it to expand covered services to include office visits and diagnostic testing and double its maximum annual deductible reimbursement amount for its approximately 200 enrollees. Maine’s bill to restore its program was amended to instead direct the state to study the unmet needs of Mainers with rare diseases; the legislation was enacted and we await the findings. New York’s program was not restored in statute but was appropriated $375,000; however, these funds have not yet been disbursed to people with CF due to administrative challenges. Coverage gaps persist for residents in those states.

Conclusions: State programs, when adequately funded, can play a key role in reducing the cost burden on people with CF and filling gaps in coverage. Efforts to strengthen and restore programs in Maine, New Jersey, and New York underscored the importance of continued, strategic state advocacy for ensuring access to care. We are hopeful that New Jersey’s expanded services, enabled by the funding increase, will help reduce the cost burden on people with CF. While we made meaningful progress in 2021, our work in Maine and New York continues.

Acknowledgements:

References: [1] Seyoum, S., Regenstein, M., Nolan, L. “Cost, coverage, and the underuse of medications among people with CF” (2020). Health Policy and Management Issue Briefs. Paper 57. https://hsrc.himmelfarb.gwu.edu/sphhs_policy_briefs/57

[2] George Washington University Milken Institute School of Public Health. 2019 Cystic Fibrosis Health Insurance Study (2021).