Facing Outrageously Expensive Copays, I Turned to Foundations for Help

Ann Reynoso avatar

by Ann Reynoso |

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Being my own advocate means having to be resilient, a trait I have come to acquire. The past two weeks have really tested me, and sparked a fierce determination on my part to obtain financial assistance to help offset expenses caused by my illness.

I have been researching potential assistance every day for weeks, which has caused me a neck strain and a stressful headache. I felt like I had hit a wall after searching every corner of the internet and reaching out to every organization and foundation I could find.

I felt defeated, and I began to wonder if anyone actually cared that I need these medications to survive. The cold, hard truth is that having medical insurance is no longer a source of comfort, especially when my medications are astronomically expensive.

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The embarrassment

My pharmacy kept sending notifications that my medications were ready for pickup. So, the next day, I went to pick them up, but I was shocked to learn what my copay would be. I really didn’t know what to say. There I was, holding up the line, unable to pay such an exorbitant cost. As others waited behind me while I spoke with the pharmacist, I became embarrassed that they had overheard my distress.

I asked the pharmacist if Medicare had paid for some of it, and she assured me that they had. The rest was my copay. The look of shock on my face must have been a signal to her, because she was so kind with her words.

“Mrs. Reynoso,” she said, “don’t worry about getting your prescriptions now. We will hold them until the end of the month. I understand your situation, so I am going to give you the telephone number of an organization that may be able to help with these expensive copays.”

Unfortunately, the organization doesn’t help people on Medicare.

So, for two weeks, I was stressed out because I didn’t have my medications, and my future was uncertain. I had nowhere to turn. How could this happen? How is it that people can’t afford these medications?

Persistence

The heavens must have been listening and watching me struggle, because out of nowhere, I received the best call of the day.

Most of us fighting pulmonary fibrosis are treated with the medication Ofev (nintedanib). When I first started taking it, my medical insurance wouldn’t cover it. So, my doctor introduced me to the Open Doors Patient Support Program, which is sponsored by the pharmaceutical company that markets Ofev, Boehringer Ingelheim.

A counselor from the program recently called to check on me and my progress. Then she asked if I needed help with anything other than what pertained to the call. I took the opportunity to ask if she knew of any programs that might help me with the extremely expensive copays for my medications. She graciously gave me the names of four foundations and suggested I call them. Thus began the journey to obtain the help I needed.

Light at the end of the tunnel

I called and applied to several foundations, but most were completely out of funds. It makes sense, especially since we are so close to the end of the year. But my persistence eventually paid off when two foundations agreed to help: the HealthWell Foundation and the Patient Advocate Foundation, via its copay relief program.

The applications were quick and easy. If approved, patients receive a pharmacy card from each foundation as proof of funds for the copays.

I was relieved to be able to return to the pharmacy and pick up my lifesaving prescriptions. This time, though, my head was held high, thanks to the kindness and support of the foundations who decided to advocate alongside me.

I have donated more than a few dollars to foundations before, but I had never given much thought to how it actually helps. At the time, it just felt good to give what I could, so I did.

Now, I’m the one who was in need and had to rely on support. I’m so grateful to those who helped to make this happen.

Thanksgiving is approaching here in the U.S., and I’m reminded to be thankful for every breath I take, each day that I wake up to, and especially, the kindness of others.

***

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.

Comments

Yvonne EDLER VON GORBITZ avatar

Yvonne EDLER VON GORBITZ

I started to get emotional when I read this article. I have Interstitial Lung Disease, Pulmonary Fibrosis. I did drink Perfinex which is "generic" but in South Africa we cannot import it any more and i am going without any medicine for 1 year. I know I will not live like my Mother until 92 but I also do not want to know I will die soon without any medicine..
When I drank Pirfenex I was doing well, now I cough every day. To drink Ofev or Nesbriet it will cost me US$2400 per month.

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Ann Reynoso avatar

Ann Reynoso

Yvonne, thank you for commenting about my column. I am so sorry to hear on how difficult it is to obtain medication for your illness. I am not aware with how getting prescriptions work in South Africa, but have you tried reaching out to organizations pertaining to ILD/PF? You also may be able to find help through clinical trials. I pray you find the help you need to obtain important medications.

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Victor M Carrion avatar

Victor M Carrion

O just found out I had Fibrosis . Bad news. Can not afford the cost. Studying the problems and see where in the world will I get help. Than you for the info.

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Ronald Lee avatar

Ronald Lee

Healthwell helped me out with Ofev. They granted all of my co-pays. Very easy application by phone. Same day approval. Because of the grant I jumped right across the Medicare gap so had the added benefit of entering the Medicare catastrophic category so ALL of my other drug copays were $0 for the rest of the year. Healthwell renewed the next year so the same thing ocurred again. I am forever grateful for the help Healthwell gave me.

My social security earnings during my working years provided slightly more benefits than the maximum allowed to qualify for Medicaid. So I was in that no-mans area of making too much income from social security and too poor to pay my co-pays. Healthwell addrsses that problem.

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Ann Reynoso avatar

Ann Reynoso

Ronald Lee, I am grateful that you read my column. It can be stressful when having to deal with government benefits (Medicare, SSi, SSDI) along with trying to find prescription grants to afford a much needed medication as OFEV. It is a daily worry, but for now I can at least relax a bit and not stress until I need to reapply for another grant. I am so happy to hear that Healthwell is able to help with your medication. Stay well.

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Lydia avatar

Lydia

I totally feel your pain. The panic that set in was horrible while figuring out how to afford these exorbitant costs. Like you, I realized the depth of giving to charities as we may be on the other side seeking help someday. Blessings to your continued health.

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Ann Reynoso avatar

Ann Reynoso

Lydia, thank you for reading my column. I agree with the exorbitant cost of medications these days. Especially those of us who absolutely cannot live without our life-saving prescriptions. I have been advocating for myself since I was first diagnosed. It's nice to know that there is help out there, we just have to search for it.

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