The High Cost of Blood Cancer Drugs

Before I was diagnosed with multiple myeloma, I had not given a second thought to the cost of prescription drugs. I had a good education, a good job, and excellent health insurance. I didn’t understand the problems with the healthcare system, because they didn’t affect me or anyone I knew.

Then I was diagnosed with multiple myeloma. Thankfully, I had just switched to a higher-coverage health care plan the year before. After I met the deductible, my insurance covered nearly all of my expenses, including my stem cell transplant and several surgeries.

What wasn’t fully covered was a $200,000 per year oral chemotherapy drug called Revlimid. But because I had a low income, I qualified for a grant from the manufacturer that made the drug absolutely free.

Then I went on Medicare

That all changed when I went on Medicare. I had assumed that Medicare paid for everything, and I was wrong. Along with having to pay for a Medicare supplement and prescription part D plan, I also have to pay nearly $12,000 a year out-of-pocket for Revlimid.

Last month, Medicare paid $10,109.95 for my one-month supply of Revlimid, and that was for only 11 pills! My share of the cost was over $2,600. Oh, the things I would rather do with $2,600! And where do former teachers come up with that kind of pocket change, anyway?

There are grants and copay assistance programs available

Yes, there are grants and copay assistance programs that will help me cover these costs. And I am ever so grateful for them. I personally use the Leukemia and Lymphoma Society (LLS), who offers an $11,000 per year grant for myeloma patients.

Other blood cancer patients I know get financial assistance grants through the HealthWell Foundation and the Patient Advocate Foundation. Other sources of financial assistance can be found on the Cancer Care site.

Why are the costs of drugs so high?

But the real question is why are drug costs so high in the first place? As blood cancer patients, we definitely want pharmaceutical companies to be rewarded and compensated for their efforts. They are inventing and producing our life-extending and life-saving drugs.

But we also want an honest, transparent, and fair pricing system. And we want answers. Why do the costs of life-saving drugs increase substantially each year? Isn't much of the initial research funding for new pharmaceutical drugs provided by our tax dollars? And why are patients able to pay nothing for a drug while on a private insurance plan but paying thousands of dollars a month on Medicare?

Why I became a drug pricing advocate

Last year I got connected with an organization called Patients for Affordable Drugs (P4AD). P4AD was founded by David Mitchell, who also lives with multiple myeloma and is very familiar with expensive blood cancer drugs.

With P4AD’s help, I was able to share my story in a virtual roundtable with my state’s senator and attorney general. I also testified via Zoom in a congressional hearing (the same hearing in which California Representative Katie Porter tore into the manufacturer of Revlimid). And just this month, I testified in two Minnesota House of Representatives committees in hopes of establishing a prescription drug affordability board in the state of Minnesota.

So, even while I am still financially afloat, our system remains broken. Something has to be done to help the staggering 1 in 3 Americans that report not taking drugs due to the expense. Even if many of us get grants or have decent health insurance, others in our blood cancer community and those living with other health conditions do not.1

So I will continue to share my story and put a face to the issue of high drug prices. Maybe if enough of us do, things will start to happen. As William Faulker so eloquently said, “Never be afraid to raise your voice for honesty and truth and compassion against injustice and lying and greed. If people all over the world... would do this, it would change the earth.”

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