May 18, 2020 Blogs

The cost blindsided us.

My name is Mark and I am from a small town in Illinois. My wife, Lana, was diagnosed with multiple myeloma, a rare blood cancer, in 2014. It is treatable, but there is no cure. In May 2015, I retired early at age 62 to help provide care and support for my wife while she underwent a stem cell transplant and began the slow recovery process. She has been on chemotherapy maintenance ever since, including an expensive drug called Revlimid. There is no choice for us –– we fight, or Lana will eventually die, sooner rather than later.

We were both covered on my former employer’s retirement health plan until we reached 65, at which time Medicare became our insurance. I opted for the more expensive premium option which paid most of my wife’s medical bills and provided a very good prescription drug plan, covering almost all of her Revlimid costs.

Lana turned 65 in November 2019 and got onto Medicare. All of her prescriptions had reasonable out-of-pocket costs –– except for one, Revlimid. There is no generic available, so we have no choice but to purchase Revlimid. An assistance program caps our expenses for Revlimid at no more than 3% of our income in any one calendar year. But even with that cap, it is still incredibly expensive at $3,675 annually. 

The assistance program resets in a way that, at the end of the year, we have to pay her full drug costs back-to-back, meaning we have to shell out $7,350 in an incredibly short amount of time. It’s incredibly hard to make that work. That cost blindsided us. This is financially stressful by itself, but remember that Lana is fighting the stress and anxiety of multiple myeloma as well.

In summary, our premiums and out-of-pocket costs for her care and drugs, for calendar year 2020, are $17,036. And if you add in the $3,675 for Revlimid for the end of 2019, it totals $20,711 from November 2019 through December of 2020.

We really don’t know what the answer is, or who is supposed to be able to afford this. Yes companies must be profitable, and people must live. But do folks have to trade a life of living for a life of merely existing? Something is wrong with our drug pricing system, and it needs to be fixed. We share our story in hopes that others out there know they are not alone, and in hopes that something will be done for families like ours.




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