Restore a crucial safety net for adults with cystic fibrosis
As many New Yorkers celebrate the end of the public health emergency, I’ve been playing a three-year waiting game for my return to “normalcy” in the form of the Adult Cystic Fibrosis Assistance Program.
The program’s elimination in the state’s 2020-2021 budget left
Michael Fox lives in Breezy Point, Queens. adults like me, who are living with cystic fibrosis, without a safety net — making it more difficult to access necessary medications amid a global pandemic.
Cystic fibrosis is a rare genetic disease that affects about 970 adults in New York. It causes the body to produce a thick, sticky mucus that clogs the lungs and digestive system and can lead to life-threatening infections that can cause irreversible damage, significantly impacting length and quality of life.
The financial distress of living with cystic fibrosis is enormous. For over three decades, the state allocated around $800,000 per year to patients like me, allowing us to maintain our private health insurance, jobs and — most importantly — our independence. The ACFAP filled in gaps in health coverage, and it was the only financial assistance program of its kind in
New York.
Shouldering the high cost of a chronic pulmonary disease alone has forced me to make difficult decisions: leaving my job, no longer being able to afford my home, and ultimately going on disability. I am not alone. Others have delayed necessary medications, putting them at a greater risk for lung exacerbations and costly hospital stays due to the progressive nature of the disease.
The Legislature tried to do right by New Yorkers living with cystic fibrosis by allocating funds in recent budget cycles, but funding is not enough. The funds have not been distributed to the intended recipients because there is currently no longer a program in place to carry this out. Without reactivating this vital program, there is no application form, no administrator to call, no disbursement process, and a dwindling sense of hope that these funds will
ever make it to the intended recipients.
We need the New York government to do more. The state Department of Health has been working with a third-party administrator to distribute the funds, and we ask state leaders to see that this process is completed swiftly. Additionally, bills currently introduced in this year’s session (A3089/ S6521) would stabilize the Adult Cystic Fibrosis Assistance Program’s future by restoring it into statute.
New York needs to follow through on its commitment to the cystic fibrosis community by restoring the ACFAP and helping to alleviate the burden for those of us who live with this disease.