Just as the worst global health crisis in a generation washed over New York City last spring, the State Legislature cut $800,000 earmarked for the Adult Cystic Fibrosis Assistance Program from the state’s $177 billion budget. Now a year into the pandemic and even with New York State standing to receive billions from the federal government in relief, New Yorkers with cystic fibrosis could get left behind again.
Cystic fibrosis (CF) is a rare genetic condition that affects some 1,600 New Yorkers, including 970 adults, and leads to progressive respiratory disease.
The irony of New York State overlooking this small group of patients, while another respiratory disease has taken over the world is not lost on us.
The ACFAP was a cost-sharing program designed to help keep people with CF over 21 years old on their commercial health insurance plans, in the economy and off state Medicaid. After CF patients paid 7% of their annual income toward out-of-pocket health care costs like insurance premiums, hospital care, diagnostic tests and prescription drug copays, the program would kick in and pick up the rest of out-of-pocket costs for CF care.
The program was especially helpful for patients with costly premiums or high deductibles.
Despite new breakthrough medications that will undoubtedly extend lives, patients require active and arduous care routines to stay healthy. Typical care routines include quarterly visits with a multidisciplinary medical team, diagnostic tests, lab work, more than a dozen prescription medications, and a slate of specialists required to treat secondary issues commonly associated with CF like diabetes, liver disease and transplant medicine for the sickest of patients. The pandemic has complicated all of that.
Importantly, the cost assistance program maintained the long-term view that when healthy CF patients participate in the economy, the state would be responsible for lower health care costs.
If patients are unable to afford the cost of care on their own, they will often drop out of the workforce and rely on state Medicaid to cover it all. For patients, one of the major drawbacks to Medicaid is that it is income-locking, while the drawback for the state is that it pays for all health care utilization, not just part of out-of-pocket costs.
Despite pleas from some State Assembly members to reinstate ACFAP, Gov. Andrew M. Cuomo’s proposed $192.9 billion 2021-2022 spending plan does not include the program. The required $800,000 to administer the program is also absent from the State Senate’s proposal, while the one-house budget from the Assembly only has $375,000 earmarked for the program.
The truth is, the decision to cut or underfund the ACFAP while the pandemic continues to rage seems out of touch with the reality that some New Yorkers are facing. The New York State Legislature still has a chance to right this wrong before the budget is settled on April 1. Doing so would be an easy political win because it would fulfill the all-too-common political promise of lowering health care costs for patients.
Former NFL quarterback Boomer Esiason is co-host of the "Boomer and Gio in the Morning" radio show. Gunnar Esiason, a student at Dartmouth College, lives with cystic fibrosis.