Dear Speaker Heastie and Majority Leader Stewart-Cousins:
On behalf of those living with cystic fibrosis in New York, we thank you for your unanimous vote to reinstate the Adult Cystic Fibrosis Assistance Program (ACFAP) last spring. We urge you to include the unspent funds appropriated for people with CF in the SFY 2021-2022 and SFY 2022-2023 budgets. To date, funds have yet been allocated to those they intend to serve and, absent this funding and authorization to extend it, the program will sunset on March 31. New Yorkers with CF have faced almost four years of rising health care costs without vital financial assistance since the elimination of the ACFAP. It is critical that lawmakers both allocate $375,000 in funding in the SFY 2024-2025 budget and authorize use of previously allocated funds to reopen and provide immediate relief to the CF community.
Include rollover funds in the SFY 2024-2025 budget
The SFY 2020-2021 budget eliminated the ACFAP and repealed statutory language authorizing the program from Article 27-G of the Public Health Law. While SFY 2020-2021 and SFY 2022-2023 budgets both appropriated one-time funding for services that the ACFAP previously provided, the program remained absent from statute and, to date, none of the $750,000 in allocated funds have been disbursed.
Recognizing that statutory language was needed for the state to reinstate the ACFAP and allow the flow of allocated funds to adults with CF, the legislature passed S.6521/A.3089 and Governor Hochul signed it into law in December 2023. S.6521/A.3089 reestablishes the ACFAP and allows the state to contract with a third-party organization to administer the program. However, the state and selected vendor are still in the process of finalizing a contract to administer the program. With the fiscal year ending on March 31st, it is urgent that the SFY 2024-2025 budget appropriate funds for this fiscal year, roll over unused funds from the SFY 2021-2022 and SFY 2021-2022 budgets, and extend the program’s authorization. Otherwise, the ACFAP will exhaust its ability to reimburse covered services just as it is reopening to enrollees, causing people with CF to face yet another year of rising health care costs without vital assistance.
Without the support of the ACFAP, adults with CF are struggling to afford their premiums and care; some are delaying or forgoing care entirely. We urge you to include rollover funding from SFY 2021-2022 and SFY 2022-2023 budgets when forming the budget for the upcoming fiscal year to ensure that the ACFAP has sufficient funds to operate, as both the legislature and Governor Hochul intended by reestablishing this critical program.
About cystic fibrosis and the Adult Cystic Fibrosis Assistance Program
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.
The ACFAP helped 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 was not an insurance program. Instead, it defrayed 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 had to 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. The program served an average of 83 adults with CF between FY 2018 and FY 2020 (the last three fiscal years prior to elimination). Average expenditure over the same period was just shy of $350,000.
Without the ACFAP, New Yorkers with CF have been struggling for nearly four years to afford their premiums and care. 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. For example, we know that some in New York have had to make difficult financial trade-offs, such as having to choose between paying for rent or their health insurance premiums for months at a time. While non-profit organizations are a vital resource for people with cystic fibrosis, they are not an adequate substitute for state programs and nothing has been able to fully fill the gap left by the elimination of the ACFAP.
We appreciate this committee’s ongoing support to reinstate the ACFAP and provide vital assistance for adults living with CF in New York. By adequately funding and rolling over previously allocated funds in the SFY 2024-2025 budget, you will align the budget with the intent of the legislature in passing S.6521/A.3089 and ensure that designated funds are finally disbursed to adults with CF.