What Gov. Cuomo owes cystic fibrosis patients


In the middle of a global health crisis, New York State government has told some of the most vulnerable people living in the state: Sorry, we can’t help you anymore.
In a letter dated April 23, the Department of Health informed a small number of people living with cystic fibrosis (CF) that they would no longer be given assistance with medical payments via the New York State Adult Cystic Fibrosis Assistance Program (ACFAP). The program must be reinstated.
CF is a rare genetic condition that leads to severe respiratory disease and affects a little over 1,500 New Yorkers. Patients like me often rely on a dozen or more prescription drugs and very specific, intense care plans.
In the face of mountain medical expenses thanks in part to exploding hospital costs and rising insurance premiums and deductibles, financial stability can be difficult to achieve. Some people with CF can be forced into a situation where they have to leave the workforce and rely on state Medicaid to cover medical claims rather than risk insolvency. Doing so traps people with a low living wage.
ACFAP mitigated the threat of that problem. It was designed to give patients the opportunity to stay on insurance coverage through their employers, enjoy financial stability and stay off state Medicaid. It was an essential program for people with CF above 21 years old, because it provided “reimbursement for cystic fibrosis-related medical care and/or insurance premiums” after enrollees had spent 7% of their taxable income on health-related expenses. The program capped out of pocket costs.
Now it’s gone. At a time when unemployment is skyrocketing and cash is running dry for American families, the heart-wrenching letter tells enrolled patients “the NYS Adult Cystic Fibrosis Assistance Program (ACFAP) was discontinued in the State Fiscal Year 2020-2021 Budget,” and that they would not receive reimbursement for “claims and expenditures dated on or after 4/1/20.”
Make no mistake about it, this is health-care rationing at its cruelest. This decision is the state taking fiscal resources away from one group of patients and reallocating them to another.

New York State’s budget has continued to increase year to year. This is one way the state is trying to rein its budget in. In some ways it feels inevitable. There are so few people living with cystic fibrosis in New York that cutting ACFAP from the budget does not risk upsetting a meaningful voting bloc. Collectively, patients and families do not possess the political power to push back against the specific policies levied at their expense.

In the grand scheme of things, cutting ACFAP is such a small cost-saving measure relative to the budget that it doesn’t make a whole lot of sense. How small? The New York State Senate Finance Committee estimated cutting the program would yield a savings of a mere $380,000, or 0.00021% of what is now a $177 billion budget.

In the now-famous COVID-19 press briefing from March 24, Cuomo said, “My mother is not expendable and your mother is not expendable and our brothers and sisters are not expendable and we’re not going to accept a premise that human life is disposable and we’re not going to put a dollar figure on human life.”

Yet Cuomo’s government just put a dollar figure on human life. In the interest of shaving $380,000 off an enormous budget, there are now people in this state living with cystic fibrosis who risk losing access to essential medications and care in the middle of a crisis. Those very people live through this crisis facing an exponentially higher risk of severe complications from COVID-19 than the general population.

I want to believe that moving forward, the government will not put a dollar figure on human life, but with the state’s decision to cut funding for ACFAP, it feels like New York State has. The Adult Cystic Fibrosis Assistance Program must be reinstated, and it must be reinstated before it is too late.

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