Adult Cystic Fibrosis Assistance Program
March 12, 2021
I write asking for your support for reinstating the Adult Cystic Fibrosis Assistance Program (ACFAP) as part of the 2022 Executive Budget. This program was eliminated from last year’s budget.
Cystic fibrosis (CF) is a rare genetic disease that affects more 30,000 people across the United States. In New York, about 1,600 people are living with cystic fibrosis and 970 of them are adults. CF is a fatal condition that typically presents as rapidly progressing respiratory disease. By age 30, a typical CF patient will lose half of his or her lung capacity. Normal daily functions become difficult if not impossible. Frequent hospitalizations are the norm. Currently, the life expectancy is about 40 years old, but with a promising new suite of therapeutic options we are hopeful that age with increase and people with cystic fibrosis will be able to live long and successful lives.
I was diagnosed with CF at 2 years old, and since then, my life’s mission has been to raise awareness, support, and money for the CF community though the foundation my parents started. We have provided essential funding for cystic fibrosis care centers in New York as well as financing basic science and patient assistance programs.
Which brings me to the State’s Adult Cystic Fibrosis Assistance Program. This program provided much needed assistance with out-of-pocket costs for those with commercial insurance. The program would kick in after enrollees spent 7% of their income on medical expenses as a cost-sharing scheme.
The ACFAP helped to off-set the thousands of dollars of out of pocket costs a person can face in treating this disease. Expenses can include physician visits, x-rays, scans, medicines, home health aides and physical therapy. The ACFAP program was funded at $800,000. While a small amount compared to the State’s overall health care budget, the assistance it provided was far greater to patients dealing with CF.
Please consider funding this critical program especially as our country copes with the worst global health crisis in a generation.
Sincerely,
Gunnar Esiason
Cystic Fibrosis Patient Advocate, Director of Patient Outreach
