Dear Governor Hochul,
On behalf of those living with cystic fibrosis in New York, we thank you for reinstating and funding the Adult Cystic Fibrosis Assistance Program (ACFAP) last spring. We write to request that you reauthorize the program beyond its sunset date of March 31, 2025, and allocate $375,000 in funding in the SFY 2025-2026 Executive Budget. Doing so will ensure that the ACFAP’s nearly 80 enrollees who depend on this program can continue to access vital health care services.
After being closed for four years, the ACFAP was able to reopen in March 2024 and provide long-awaited financial relief for New Yorkers with CF, thanks to reauthorization and funding provided in the SFY 2024-2025 budget. Despite a limited enrollment period from March 1-31, 2024, we understand that nearly 80 adults with CF were approved to utilize the program, of which nearly 50 adults with CF have been reimbursed for covered services. The program halted enrollment after March 31, 2024, due to the expiration of the contract between the state and the ACFAP’s third party administrator and it has not yet been reopened to new applicants despite reauthorization. Without an extension in the upcoming budget, the program will sunset on March 31, 2025, and patients living with cystic fibrosis will no longer have access to critical funding.
Cystic fibrosis is a rare genetic disease that affects approximately 1,600 people in New York, including 970 adults. 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; lung damage caused by infection can be irreversible and have a lasting impact on length and quality of life.
While advances in CF care are helping people live longer, healthier lives, we also know that the cost of care is a barrier to care for many people with the disease. According to a 2024 survey conducted by the Cystic Fibrosis Foundation and the Dartmouth Institute, half of people with CF report experience difficulty affording basic living expense and over a third delayed 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, filling a prescription, or skipping a treatment altogether — due to cost concerns. Because CF is a progressive disease, 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.
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 with CF enrolled in commercial plans, allowing them to continue to work and keeping them off of public health insurance. To participate, adults with CF have to be at least 21 years old, ineligible for Medicaid, and maintain private health insurance.
While we are grateful that adults with CF who enrolled in the ACFAP in March 2024 have been able to utilize the program, we know there are many others in the CF community who are struggling to access their care and are interested in enrolling in this program. We urge you to include reauthorization and funding for the ACFAP in the executive budget so that those currently utilizing the program can continue to access its vital benefits, and so that additional people with CF can enroll.
By reauthorizing the ACFAP and providing level funding in the SFY 2025-2026 budget, you will help ensure that New Yorkers with CF who depend on this program do not face lapses in financial assistance or gaps in care. Thank you for all that you do for the cystic fibrosis community in New York.