Voices Across America

Oral Parity in multiple myeloma treatment

stones avatar


State: North Carolina
Congressional District: NC08


Blood Disease, Cancer, Immune Disease, Rare Disease

Issues and Challenges

Rick has encountered: Copay Issues, Oral Parity

My Story

I am dying. Yes, yes, we all start dying at the moment of our birth. My story is a bit different, because I have an added incurable blood disease - Multiple Myeloma. On April 16, 2019 I had an Autologous Stem Cell Transplant at Duke University Hospital to try and slow down the inevitable.

First few months after transplant I felt great. Those months were the closest I’d felt to normal in a long time. Started maintenance chemo (Revlimid) 10 mg in August. When I was diagnosed with MM in July 2018 my M-Spike number was 5.50 (that's bad). The day I went in for transplant, my M-Spike was 0.17. By Fall of 2019 the Revlimid began taking a toll on my body.

I began PT in September 2019. At first my PT sessions were really good. I had great energy and a real desire to improve. It was 3 steps forward, 1/2 step back until November. I started to slow down. Easily fatigued. By the middle of December PT was 1/2 step forward 2 steps back. Had to nap when I got home from a session. Then I began to develop a rash that started at my head and literally spread down my whole body over the next 2 weeks. Clearly the maintenance dosage was too high. My numbers were, however, fantastic. The whole purpose of maintenance chemo is to keep your “numbers” low.

When I was diagnosed with MM in July 2018 my M-Spike number was 5.50 on a scale of 0-10. To over simplify, it’s the amount of proteins in your blood. In a normal person it is undetectable. In December 2019 as my body was going through its rash phase my M-Spike was “undetectable”. I was with the normal people for a moment. A decision was made to cut the dosage in half because of the egregious side effects. Unfortunately, reducing the maintenance dosage to 5 mg from 10 mg stopped doing what it was supposed to do. M-Spike began to rise. April 2020 bloodwork showed M-Spike to be 0.48. May was 0.6. June showed 0.81. Not good. Wrong direction. Both Oncologists agreed that the Stem Cell Transplant was not completely successful.

The psychological impact was devastating. Met with both oncologists and decided on a different family of maintenance chemo to bring that number under control. Since my June number was so high re-induction is going to be my new reality. That means starting from almost zero with a whole new set of chemo drugs consisting of Darzalex, Pomalyst, and Dexamethasone. Pomalyst and Dexamethasone are both oral medications. Infusion schedule (Darzalex) will change from one a week at the beginning to once a month over the next 6 months. Trying to keep positive, but I. Am. Devastated.

With Medicare Part D the monthly co-pay (after the initial $6,500 deductible) is $1,300 for that cocktail. If I had commercial insurance instead of Medicare, my monthly co-pay would be $0 after an initial $6,500 deductible. Manufacturers do not give Medicare patients the same co-pay benefits they offer to commercial insurance patients. If you do the math, I will pay $22,100 per year for my drugs on Medicare as opposed to $6,500 per year if I had commercial insurance. Total cost breakdown:

Premiums/Yr Deductible Drug Cost Total Cost
Medicare $2,808 $6,500 $22,100 $28,600
Commercial Ins. $10,800 $6,500 $0 $17,300

My Motivation and Inspiration

To achieve parity between Commercial Insurance costs and Medicare costs.

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