N.Y. hurts desperate patients
n April, when New York was the epicenter of the COVID-19 pandemic, the state eliminated the Adult Cystic Fibrosis Assistance Program (ACFAP), a healthcare program for adults living with cystic fibrosis.
As industries shut down, instigating record unemployment and triggering the loss of employment-based health insurance for millions, imagine the terror of having a preexisting pulmonary disease in which basic medications cost upward of $3,000 a month.
CF is a life-threatening genetic disease that affects nearly 1,600 New Yorkers. It makes the body produce thick, sticky mucus that clogs the lungs, leads to respiratory infections, and affects digestive and pancreatic systems as well. There is no cure, and people with underlying conditions like it may are at greater risk of developing serious illness from COVID-19. Now, more than ever, people with CF need comprehensive health-care coverage to afford the intensive care and treatments required to manage the disease. They need this vital state program.
What do I mean by intensive care and treatments?
To maintain my health, in addition to 25 pills a day, I spend an hour in the morning and an hour at night completing my airway clearance treatments and taking three separate nebulizers. Every other month, I add an inhaled thrice daily antibiotic to my regimen.
I try to exercise at least five times a week to build respiratory strength and to aid gastric motility and digestion. In February, I was hit with the flu; I had to take two courses of steroids and two different oral antibiotics.
In my 20s, I started having to spend two weeks a year in the hospital on IV antibiotics to fight bacterial infection in my lungs. I would do home IV antibiotics every 18 months or so.
Thankfully, in the past decade, there have been incredible breakthrough treatments that have helped me stave off such exacerbations using much less invasive oral antibiotics. These drugs come with an exorbitant price tag of $300,000 a year. Yes, I meant to include all five zeros.
Thankfully, I have insurance through my spouse’s employer. Until April, I also had the ACFAP.
A few years ago, we had health insurance through COBRA at a cost of more than $2,000 per month. plus extremely high deductibles. While the ACFAP did not cover the total cost, it made it more affordable.
In addition to being cared for at a multidisciplinary CF clinic, I regularly see specialists such as a gastroenterologist, ENT and endure a battery of exams, such as DEXA scans, pulmonary function tests, glucose tolerance tests, chest and abdomen x-rays. The state program covered these, as well as certain over-the-counter medications, such as Flonase and nasal saline.
While I never thought twice about purchasing these treatments whenever I needed them, I now have pause. Should I stretch out the costly Flonase and only do one dose twice a day, rather than the prescribed two? Do probiotics really help mitigate the effects of chronic antibiotics? Our deductible was already met when the state passed its new budget that eliminated the ACFAP, but what will next year’s expenses look like when my out of pocket costs are exponentially higher? What aspect of my care will I do without because it is suddenly unaffordable?
The ACFAP was not an entitlement. It was not a charity. It was a program of last resort. To be eligible, you had to already have private health insurance. It simply offered reimbursement for eligible medical care and insurance premiums, and it only did so after we showed we’d paid a certain percentage of our income towards these costs.
Out of a $178 billion budget, New York had allotted $800,000 per year for this program. Thanks to that minute budget appropriation, my family had the security of uninterrupted comprehensive coverage. Without it, New Yorkers like me have had to make difficult decisions about their health and finances while still navigating the pandemic.
I am not alone in worrying about interrupted care. A woman with CF who lives on Long Island recently had a lung transplant and is unable to work. She has Medicare, which does not cover the high costs of the anti-rejection regimen she must be on for the rest of her life. Another New Yorker, from Queens, told me that the loss of ACFAP will cause her so much financial hardship that she fears for her life-her insurance premiums, medications and home IVs are unaffordable. A third said, “It was the only thing saving me from losing my house.”
Over the course of the pandemic, Gov. Cuomo has rightly said that lives are not expendable. Let’s act like we mean it and restore the ACFAP as soon as possible.