I have been on Medicare for 1 year now. Below is a link to a good summary of how the prescription drug coverage works, including the whole donut hole part. Once you get past the donut hole, which will take only 1 or 2 refills of a non-generic TKI, you get into catastrophic coverage where you pay 5% of cost of the drug for the rest of the year. I am on 150 mg/year of Tasigna which last year had a retail price of of $3133.88 per 28 capsules (so for someone on full dose (300 mg 2x/day) the retail cost would have been $12,535.52 per every 4 weeks or $162,961.76 per year. As you go through the various stages of the medicare drug coverage program, they track something called total out-of-pocket costs, which include what you pay and other payments made by programs or organizations such as the Medicare Gap Coverage Discount Program. After you put all of this in the meat grinder, my true out-of-pocket cost for the year for Tasigna was $4,388.24, not great, but not enough to break the bank. Had I been on full dosage, my true out-of-pocket cost would have been $9,090. I suspect this number is very close to what others on full dose Sprycel or non-generic Gleevec would have paid.
Once you are on Medicare, you are no longer eligible for the various manufacturer's co-pay cards, but if your financial situation warrants, there are a number of medicare assistance programs out there. I am fortunate enough that I do not qualify for these programs, so I don't really know anything about them.
Regardless of your financial situation, the burden of expensive medication is significant under US Medicare. In addition to the high out-of-pocket drug costs, there are also the Medicare premiums and supplemental Medicare premiums. All in, I pay an additional $7,500 per year in these premiums, bringing my total out-of-pocket medical expense to roughly $20,000 in 2018.
