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Have You Read This Article About the Cost of Rare Disease?
We all know how much it costs to live with PH. This article by Hawken Miller shares study results from EveryLife, a Foundation for Rare Disease. I found this article helpful and interesting,
From my experience working with Insights, the research part of BioNews, the total response rate seems low with a high rare disease rate.
Please give it a read, and let’s discuss your thoughts on the costs of rare diseases. Are there parts that you agree or disagree with? Let’s talk about it here.
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6 Replies
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@jenc my heart started racing as I read this. I often don’t even want to know how much insurance covered because then I have nightmares about Cullen someday not having it. The cost of PH and post-transplant expenses are astronomical. Thank you for sharing!
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Yes, @colleensteele, I, too, felt overwhelming gratitude for my insurance as I read this. I, too, know of the high costs of living with PH. I know my mother-in-law needed a transplant before she passed away. I recall them saying her insurance was maxed out. They then started to ease the cap on payments if there was a medical need like a transplant.
This article certainly reminds us all how much medical care, especially with a rare disease, costs. It is sad. But still grateful for my insurance, too.
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Before my son’s PTE surgery, his medication alone (not including doctor visits, hospitalizations and medical tests) was about $30,000 — per month. Yes, you read that right — thirty thousand dollars every month. His surgery cost the insurance company almost a cool million. Now that his health is better, his medication is about $30 every month, plus whatever his insurance company pays for doctor visits and medical tests.
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Oh, @mamabear007, I can believe that. If I were not to receive any copay assistance, my PH meds would certainly drain our funds fast. They do enough damage with the copay assistance. Did he not have any copay assistance, or was this IV or subQ?
Each year when I calculate our medical expenses, most all are mine; it is crazy! Some days I do not know how we made it through. It is sad, at times, that we have to pick between meds or healthcare over other things like food, water, and power. It certainly is a financial burden to all despite the rare disease.
Thanks for sharing mamambear, hugs to you this week.
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@jenc, his insurance covered the his doctor visits and tests. His out of pocket max was $3K, and the first month on Remodulin covered that. The insurance refused to cover the Adempas and Opsumit, and his doctor worked with the pharma companies to get them to provide those two with only $15 out of pocket for each per month. Now that he’s doing better, he hasn’t met his out of pocket max even once. I know… First world country worries.
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Wow,@mamabear007, I bet he met that fast. I usually met my max by April most years.
I am grateful that the doctors helped with the pharma companies. The process for these meds is ridiculous.
Thankfully, he is doing better and does not meet his max. Thanks for sharing.
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