Many New Hampshire residents are struggling to afford their health care, particularly those – like me – who are living with a rare or chronic disease. Rising insurance premiums and patient out-of-pocket costs mean that even the cost of maintaining health insurance coverage has become prohibitive for many. As New Hampshire’s policymakers consider ways to address rising health costs, I urge them to protect non-profit patient assistance, a critical lifeline that has helped me and thousands of New Hampshirites like me to afford lifesaving care.

I have idiopathic pulmonary fibrosis (IPF), a rare disease that makes it nearly impossible to breathe. I had never even heard of IPF until I saw the name of a fellow little league coach in the obituaries section of my local paper in 2014. I had no idea that he was sick, yet he had suddenly passed away from something called IPF. I had been coughing and thought that I had pneumonia. But after the initial treatments didn’t work, I was ultimately diagnosed with IPF, the same disease that led to the death of my friend.

IPF is an incurable disease that can only be managed. It is progressive, which means that it gets worse over time, particularly when it goes untreated. Unfortunately, there are few treatment options. For people living with IPF and similar rare and chronic diseases – such as arthritis, lupus, diabetes, pulmonary hypertension, cancer, and many others – the costs associated with medication and support services are significant. My medication can cost between $40,000 and $50,000 per year. The stress associated with trying to afford these expensive treatments can exacerbate diseases like IPF.

Fortunately, a non-profit charitable assistance foundation stepped in to help me afford my treatment. And because the assistance is from charitable foundations, I get help at no additional cost to taxpayers. Although the available medications don’t work for everyone, one of the two FDA approved treatments helped slow down the progression of my disease. Today, unlike many IPF patients, I do not need oxygen to breathe and I am able to walk up several flights of stairs on my own. Though there are still challenging days, the problems that I have pale in comparison to the problems I would have without patient assistance.

Unfortunately, as is often the case when the government gets involved, non-profit patient assistance is under threat in Washington. A misguided policy from the U.S. Centers for Medicare and Medicaid Services (CMS) is now allowing health insurance companies across the country – including in New Hampshire – to deny coverage to New Hampshire residents because they receive assistance from a third party such as a non-profit patient assistance foundation with their premiums or copays. For years I have been involved with the Knights of Columbus, a charitable organization – this policy would allow an insurance company to deny coverage to someone simply because the Knights of Columbus helped pay their bill. Imagine a policy that would prevent charities from being charitable, or even prevent a church from paying a parishioner’s medical bill. 

Patients, like me, who rely on non-profit patient assistance programs have no other options. Most patients diagnosed with IPF die within three to five years of their diagnosis, but charitable patient assistance has enabled me to access the medication that I need to continue living.

A high quality of life, for me, means being able to attend my grandchildren’s sports games and theater productions with my wife. Thanks to patient assistance, I can still accomplish these goals, even while living with a chronic disease. Without patient assistance, vulnerable patients would be left out in the cold. I encourage all New Hampshire residents make their voices heard and tell their elected officials about the importance of protecting non-profit charitable assistance. As New Hampshire’s lawmakers work to address the rising cost of health care, they must protect the thousands of Newhampshirites who rely on non-profit patient assistance as a critical safety net of last resort.

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