When you’re an IPF patient, the costs of care add up, but help is out there
When I was diagnosed, I didn't know about the financial implications
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If you’re a regular reader of my column, you’ve likely heard me say before that transplant patients commit to a lifetime of medical surveillance.
I was diagnosed with idiopathic pulmonary fibrosis (IPF) on the last day of January in 2017. Until then, I didn’t see my primary care physician regularly, except for annual physicals or preventive care. I saw my dentist four times a year by choice. I would meet my dental insurance deductible before I’d meet my health insurance deductible. Following my bilateral lung transplant in July 2021, the number of my medical appointments increased along with their frequency.
As of Jan. 7, I’ve had 139 medication changes since I received my transplant, and I’ve had three medical appointments and one pharmacy visit so far this year. I have four more appointments scheduled for January.
Medical appointments, testing, and procedures are constant, and the costs add up quickly. I met my annual deductible for health insurance this year on Jan. 7. In 2024, it took me until Jan. 16 to meet it.
But what do you do when insurance is not enough?
The cost of IPF care
When I was diagnosed, I had no idea what the financial implications of IPF and a lung transplant would be.
A financial coordinator is part of the care center network team at the Inova Fairfax Advanced Lung Disease and Transplant Clinic here in Virginia. They help patients like me understand what our insurance will likely cover and what out-of-pocket expenses we’ll likely incur.
I learned during an early meeting with the financial coordinator that many patients turn to crowdfunding platforms to raise money for treatment and, in some cases, their transplant.
One of the better-known crowdfunding platforms, GoFundMe, provides a step-by-step guide for creating and personalizing a fundraising page. An internet search for “fundraising platforms for patients with a chronic illness” will yield a variety of platforms. However, patients must conduct due diligence by checking reviews, Better Business Bureau reports, and asking the financial coordinator if they are familiar with the platform.
Medications can be one of the biggest expenses. I used GoodRx to estimate the cost of pirfenidone, the generic form of Esbriet, one of three anti-fibrotic medications available to treat IPF. On average, the drug retails for $11,396 for 90 801-mg tablets, but its price with the GoodRx Gold plan is $384.61. I recall being told when I was prescribed it in February 2017 that Esbriet could cost between $97,000-$100,000 a year. That price has come down significantly with the introduction of its generic.
Even so, it costs significantly more than most people can afford out of pocket. Fortunately, there are other options.
Patient assistance programs
Financial assistance may be available. These programs may be managed by drug manufacturers or private organizations, and qualification for them varies, but they generally involve meeting household income guidelines. Not all the programs require you to have insurance to qualify.
Genentech offers the Esbriet Co-pay Program, which requires patients to be 18 years or older, living in and receiving treatment in the U.S., and have commercial insurance. The goal is to provide co-pay assistance. There’s also the Legacy Patient Program, which may provide the medication at no cost and is open to patients with and without insurance.
The Boehringer Ingelheim Cares Foundation’s Patient Assistance Program provides financial assistance for patients taking certain medications, including Ofev (nintedanib) and Jascayd (nerandomilast). Patients may be eligible if they’re living in and receiving treatment in the U.S., are uninsured or have Medicare Part D, and have a total household income at or below an annual limit established by Boehringer Ingelheim.
Some private organizations also offer financial assistance, depending on the availability of funds. The Healthwell Foundation, a nonprofit designed for underinsured Americans, awarded more than $1.2 billion through its programs in 2024.
January is when the copays reset on my insurance. This journey is difficult enough without worrying about how to pay for medications. Sharing what I have learned on my journey is how, together, we can make every breath count.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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