Dear Honorable Governor Kathy Hochul:
On behalf of over 1,000 adults living with cystic fibrosis (CF) in New York, we urge you to reinstate the Adult Cystic Fibrosis Assistance Program (ACFAP) by signing S6521/A3089 into law. This bill passed both houses of the legislature unanimously, a testament to the program’s broad support in the state. We were grateful to see funds from SFY 2022 and SFY 2023 budgets designated for adults with CF rolled over in the SFY 2024 budget; however, statutory language is critical to ensure the program can once again serve adults living with CF in New York as intended by the state. We urge you to sign S6521/A3089.
Sign S6521/A3089 to Reinstate the ACFAP
The SFY 2020 budget eliminated the ACFAP and repealed statutory language authorizing the program from Article 27-G of the Public Health Law. While the state authorized funds in the SFY 2022 and SFY 2023 budgets for services the ACFAP previously provided, the program has not been restored in statute and none of the $750,000 in allocated funds have been disbursed to the intended beneficiaries. We have been encouraged to see the state continue to fund this program; however, the absence of statutory language has prevented ACFAP funds from reaching the CF community. The past three years have shown that an appropriation alone is not enough — in order for adults with CF to receive support from this program, the state must enact statutory language reinstating the ACFAP in Public Health Law.
About Cystic Fibrosis and the Adult Cystic Fibrosis Assistance Program
Cystic fibrosis is a rare genetic disease that affects more than 1,600 people in New York, including over 1,000 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, which operated in the state since 1987 prior to its elimination, helped adults with cystic fibrosis afford the high cost of their medical care and insurance premiums — allowing them to maintain their private insurance coverage and access the care and treatments they need to manage the disease. Without the support of the ACFAP, adults with CF are struggling to afford their premiums and care, and some are delaying or forgoing care entirely.
The ACFAP Helps People with CF Afford Their Care and Maintain Private Insurance
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 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.
Without the ACFAP, some New Yorkers with CF have had to make difficult financial trade-offs, which has impacted their access to care. Melissa, an adult in New York City who relied on the ACFAP for seven years before the program was eliminated, was forced to remove an inhaled bronchodilator from her care regimen due to cost concerns. Inhaled bronchodilators are prescribed for 80% of people with cystic fibrosis in order to widen the airways and improve respiratory symptoms. Without her inhaled bronchodilator, Melissa experienced an exacerbation of her CF symptoms and was concerned about the long-term impact on her health. Unfortunately, Melissa’s story is not uncommon. The Foundation has heard from many New Yorkers with CF who reported needing to forgo paying for food, car, or electricity bills to afford their health care costs since the ACFAP was removed from statute. While non-profit organizations are sometimes able to help offset costs, their funding can run out and not all patients are eligible — making state programs like the ACFAP an invaluable safety net for adults in New York.
Reinstate the ACFAP
The elimination of this vital program has made it more difficult for adults with CF to remain on commercial insurance and access the care they need. After three years without CF assistance from the state, adult New Yorkers with CF are counting on this bill to permanently restore the ACFAP. Funding for the ACFAP has already been allocated; all that is needed is the reinstatement of statutory language so that these funds can be disbursed to adults with CF as the state intended in the past two budgets. Please reinstate this program by signing S6521/A3089 into law and adding the ACFAP back into statute.
Thank you for keeping in mind the needs of people with CF when considering this bill. We look forward to working with the state to improve the lives of New Yorkers living with cystic fibrosis.