Medical costs and financial strain force me to limit my PF treatment

When healthcare decisions are based on what you can afford, not what you need

Ann Reynoso avatar

by Ann Reynoso |

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Dealing with the financial expenses associated with having a rare or chronic illness like pulmonary fibrosis (PF) can be tough. I’m responsible for making sure that I receive all the PF treatments available to me, but I’ve discovered that they come with a hefty price tag.

Among the things to consider are the cost of medications, oxygen therapy, pulmonary rehab, doctor appointments, hospitalizations, and travel expenses. Plus, my husband has his own medical responsibilities.

Having to make difficult choices when it comes to my illness is not easy. Many times, I’ve had to toss a coin or roll the dice, so to speak, to make these decisions. There have been times when my husband and I have had to decide which treatments were most important at the time.

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Financial strain

Living on a tight budget can make it difficult to acquire treatments. That situation is not only stressful, but also embarrassing when I have to explain why I sometimes turn down certain treatments.

I remember the first time my doctor prescribed oxygen therapy for me. I was relieved to finally be able to breathe better. But it took two months for me to start the therapy. This was my first experience with being unable to financially support my treatment.

It also took almost a year for me to afford several of my PF medications. Even with Medicare to help, premiums and copayments can be quite substantial. It took me three years to finally find nonprofit organizations to help with some of my copays.

During my last doctor’s appointment, I was given a referral to start pulmonary rehab three times a week for three months. For some, this might seem like a normal procedure, but for someone like me on a limited budget, it can become a strain. After speaking with my insurance company and learning what my copay would be, I had to decide to either quit rehab or ask my doctor to prescribe fewer sessions.

I could tell my doctor was disappointed with my decision. I explained that more than one session a week would put me in a financial bind. I felt like a complete failure. I believed the doctor would think I wasn’t serious about my illness and the treatments I needed.

Of course I wanted to feel better, I just didn’t know how to make it happen. Being noncompliant isn’t always about rebellion. In my case, it comes down to financial stability.

Finding a balance

I’ve forgotten how easy it was when I was privileged enough to have full medical coverage. I could go to the doctor anytime I needed to without worrying about the cost. I was fortunate to have a full-time job, as did my husband. Things are different now.

My entire world has changed since my PF diagnosis. I had to retire from teaching so that I could concentrate on diagnosing and treating my illness. My husband retired two years ago, and our financial status has changed accordingly. It will be four years since I learned of my illness, and I’m still working on finding a balance.

Making a monthly budget for my medical expenses helps relieve some of the stress. When I visit the hospital for procedures and treatments, I ask beforehand for an estimated cost and whether any payment options are available.

Of course, I find it disappointing to have to choose between treatments, but I do my best to make the best choices. I know that in time, I’ll find a balance. I have faith that at some point, a pot of treatments will be waiting for me at the end of the rainbow.

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.


Steve Dragoo avatar

Steve Dragoo

Hi Ann,

I can identify with you easily but my financial shrinkage has been a process for over 20 years so I have had time to adjust to it and actually take joy in finding new ways to be frugal. One thing that helped me back ten years ago that I still use today is being a freelancer. On average it has increased my income in those 10 years + $13000 and actually only worked 6.5 years of the 10, the last 2 years steady. I work online as an independent consultant for Upwork. Not promoting them as there are several good ones but it has worked for me.

With your background maybe look at online options. I like the flexibility. Some weeks I work 5 hours; others 25 at a good hourly rate.

Stay well...

Debbie Klein avatar

Debbie Klein

My heart is heavy for you and others twofold: the fact that you have PF and the fact that the treatments aren't covered by Medicare. The process is just too difficult to ask of someone who has just been told they have a terminal illness. Please write this same letter to your congressmen/women and senators. Maybe if we bombard Washington D.C. they may take notice.

Jan Busch avatar

Jan Busch

I was diagnosed with IPF in 2019. Had an exacerbation and was hospitalized in July 2022. I was prescribed oxygen, prednisone & antibiotics and Ofev at discharge. I have traditional Medicare and a supplement (Plan G) as well as Part D (drug coverage) My oxygen, 36 sessions of rehab and all my PFTs, HRCTs and follow up pulmonologist visits as well as routine PCP visits and care are covered by my insurance. No copays after initial deductible. Only the OFEV copay isn’t covered (and my income is too high to qualify for copay assistance.) But Medicare Part D has a catastrophic cost limit of about $7000. per year and my $3000 a month copay will soon reach that limit. Medicare with a supplement is excellent insurance and my out of pocket costs have been minimal. I go to Mayo Clinic and have a great staff of pulmonologists. I would not like to be charged for all these expensive medical needs after paying a lifetime of payroll deductions for Medicare as well as monthly premiums for Medicare, supplements and drug coverage. The traditional Medicare recipients I know are also happy with their insurance coverage. And in 2025 the out of pocket drug expense will be limited to $2000. per year.


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