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In reply to the discussion: Whoa! My Lynparza cost right at $15,000 a month. [View all]Nanjeanne
(6,278 posts)"manageable" blood cancer. It basically means that he will go on a drug or therapy, get remission for a certain number of months (or years) and then relapse. He's been living with this for 11 years with many relapses. At one time, after his stem cell transplant in 2015, he was on a maintenance drug for 4 years. Because the maintenance drug was in pill form - at home - it's not covered by Medicare but by the "Medicare" Drug plan (I use quotes because this is simply called medicare drug plan - but all drug plans are run by private insurance). His copay each month (after insurance paid their part) started at $600/month and then every year after it went up - so by the time he relapsed after 4 years and went on a different treatment - his copay was $960/month! No way could we afford that. But because he was on Medicare (not private insurance) he wasn't eligible for discounted help from the pharmaceutical company. I know - crazy but because Medicare is a federal program - even though the drug plan was private - it's only offered to Medicare participants so considered federal. Our only solution - and perhaps something you can consider if you are in the same boat - was to get a grant from various patient advocacy groups. When he started this route - we would get a $10,000 grant which covered the copays for one year. By the time we finished with this drug - we were getting an $11,000 grant and that covered less than a year and we were forced to go find another grant if we could from another organization.
It's a horrible system and something no person facing serious illness should have to navigate. Usually a cancer hospital will have a social worker or pharmaceutical advocate that can help you. Reach out to your team and also search for patient copay grants for your particular illness and see which organizations might be able to help you. If you are not on Medicare - you can try reaching out to the pharmaceutical company for their discount help.
Some organizations we received copay help from were:
Lymphoma and Leukemia Society - probably only works for blood cancers
Patient Advocate Foundation
Healthwell Foundation
And check with American Cancer Society
I wish you well.
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