August 5, 2020 Blogs

I constantly worry about what I will do.

My name is Joyce and I’m from Ceylon, MN. I have multiple myeloma, which is a cancer of the blood plasma cells, and my treatments are extremely expensive.

So far, I have been able to afford my treatment because I chose to stay on my employer’s insurance even after I qualified for Medicare. My insurance plan costs around $14,000 a year including the premium, deductible, and copays for my general medical and drug coverage,  though it has a maximum out-of-pocket cap at $350 for drugs annually. If I had switched to Medicare, I would have faced drug copays of $1,000 to $2,000 per month –– and that’s without factoring in the costs of the medical plan itself.

The prices of my drugs are also constantly increasing. If I relapse, I could easily go on prescription drugs that cost upwards of $20,000 per month. The out-of-pocket cap on my current plan prevents me from having to pay for these inexplicable price increases. 

Though I am currently doing well, I am worried that I will not be able to afford the cost of my insurance plan in the future, or even a supplemental plan. I am 66 years old and disabled, and my husband is 82 years old, so we cannot work. 

I mostly pay for the premium through grants from the Leukemia & Lymphoma Society, but these grants are given annually and can go away at any time. There were a couple of years when I did not have a grant or the grants weren’t enough to cover my insurance costs, and I had to use my retirement savings. If I lose the grants again, I will have to borrow on my house, use what little is left of my retirement savings, and go on welfare. There’s always anxiety in the back of my mind, and I constantly worry about what I will do when I am no longer able to pay for my treatments.


Patients For Affordable Drugs is the only independent national patient organization focused exclusively on achieving policy changes to lower the price of prescription drugs.