Dear Speaker Heastie, Majority Leader Stewart-Cousins, Chair Paulin, and Chair Rivera:
On behalf of those living with cystic fibrosis in New York, we sincerely thank you for your support in reinstating and funding the Adult Cystic Fibrosis Assistance Program (ACFAP) last year. With this vital program set to sunset on March 31, we urge you to reauthorize it through March 31, 2030, in the SFY 2025-2026 budget and maintain its funding at $387,500. Due to the elimination of the ACFAP, New Yorkers with CF faced nearly four years of rising health care costs without critical financial assistance. Recognizing this need, the legislature unanimously voted to reinstate the ACFAP and appropriated funding for people living with CF in recent budgets. By extending the program for five years and maintaining its funding, you can ensure that New Yorkers living with CF can continue to access and afford essential care.
About Cystic Fibrosis
Cystic fibrosis is a rare genetic disease that affects nearly 1,700 people in New York, including more than 1,100 adults, across all racial and ethnic groups. CF causes the body to produce thick, sticky mucus that clogs the lungs and digestive system, which can lead to life-threatening infections. Cystic fibrosis is both serious and progressive; patients who delay or forgo treatment — even for as little as a few days — face increased risk of lung exacerbations, costly hospitalizations, and potentially irreversible lung damage. While advances in CF care are helping people live longer, healthier lives, we also know that the cost of care is a barrier for many people living with the disease. 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 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.
The Adult Cystic Fibrosis Assistance Program
We urge you to reauthorize the ACFAP for five years and reappropriate $387,500 in the SFY 2025-2026 budget to ensure long-term stability of the program, allowing eligible individuals to enroll and benefit from the program. The ACFAP helps alleviate the financial burden of cystic fibrosis care by reimbursing patients for CF-related services, such as insurance premiums, prescription drugs, inpatient and outpatient care, and vitamins ordered by a medical provider. The ACFAP is not an insurance program. Instead, it defrays some of the out-of-pocket costs for people living with CF enrolled in commercial plans, allowing them to continue to work and keeping them off public health insurance. To participate, adults with CF must be at least 21 years old, ineligible for Medicaid, maintain private health insurance, and contribute seven percent of their annual income to the cost of their CF-related medical care and/or insurance premiums. New York’s per capita health care spending is among the highest in the country and, as costs continue to rise, having fewer options for assistance has placed additional financial strain on adults with CF. While non-profit organizations are a vital resource for people living with cystic fibrosis, they are not an adequate substitute for state programs like the ACFAP.
Reauthorizing and funding the ACFAP will help ensure long-term stability of the program, allowing eligible individuals to enroll and benefit from the program, as both the legislature and Governor Hochul intended. The program was eliminated in the SFY 2020-2021 budget, and while subsequent budgets allocated one-time funding, the absence of statutory language prevented fund distribution. Recognizing this, the legislature passed S.6521/A.3089, which Governor Hochul signed in December 2023, reestablishing the ACFAP and allowing the state to contract with a third-party organization to administer the program.
The ACFAP reopened in March 2024, providing long-awaited financial relief for New Yorkers with CF. Despite a limited enrollment period from March 1-31, 2024, nearly 90 adults with CF were approved to utilize the program, of which more than 50 have been reimbursed for covered services. However, lags in contracting have resulted in limited opportunities for enrollment, despite strong interest in the CF community; the program halted enrollment at the end of the fiscal year on April 1, 2024, and only reopened briefly in February 2025. In the absence of continued reauthorization and funding, the program will sunset on March 31, 2025. Without the support of the ACFAP, adults with CF will continue to struggle to afford their premiums and care; some already report delaying or forgoing care entirely.
We deeply appreciate the legislature’s ongoing commitment to the ACFAP and to the New Yorkers living with CF who rely on this vital assistance. By reinstating the ACFAP for five years and adequately funding the program in the SFY 2025-2026 budget, you will help ensure that people living with CF can access and afford the care they need to survive and thrive.