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    • Life With Multiple Myeloma
    • Oct 07, 2019

    Navigating the Cost of Myeloma Meds

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Ken Fabian was diagnosed with multiple myeloma on January 11, 2007–over thirteen years ago. 

Ken habitually saw the doctor for yearly blood work when his myeloma was discovered. Before he was diagnosed, he was in between health insurance companies. Quickly the insurance turned him down, and Ken found himself a new cancer patient with no insurance, no money, and no savings.

Ken was incredibly fortunate to receive his six month Velcade treatment donated. Later, his doctor convinced the president of the hospital to donate Ken’s auto transplant. Being the recipient of so many acts of kindness, Ken wanted to pay it forward. He started the Central Florida Multiple Myeloma support group, which has been going strong for twelve years. 

“I know now that I need a TEAM.  Together Expect Amazing Miracles,” –Ken Fabian, myeloma patient.

Ken’s story is an unlikely one. Most myeloma patients aren’t so lucky when it comes to affording appropriate treatments. We know there isn’t a “fix-all” solution to this major problem in myeloma healthcare, but a few patients offered their advice:

Call the manufacturer and ask them about programs, grants, and ways they can help you get your medicine. —Ken F.

Medicare has been great for us. —Elizabeth H.

Celgene and LLS always paid part of my Revlimid when I had insurance. I paid nothing, no copay…Celgene covers all my Revlimid now because I lost my insurance. —Anne M. S.

There are $10,000 grants depending on your income available to cancer patients. The pharmaceutical company where I got the Revlimid set it up for me. —Mary C. D.

If your copay is too high for oral chemotherapy, ask your oncologist for injectables which cost much less. —Elizabeth H.

Check all of the foundations. Many of them will renew a grant year after year. Most are $10,000 grants. I’ve received a grant from a second foundation after the first ran out before the year ended. MIRT and UAMS gave me a list of foundations to try. CVS mail order helped me sign up for a second. —Steve C.

Go straight through the pharmaceutical company who makes your meds. The oncology social worker and even the pharmaceutical team helped me navigate this as well. —Sally D.

I worked in oncology before having myeloma. The pharmacy reps told us to have patients call them. They wanted everyone to be able to afford their meds. I joined a clinical trial. That way Revlimid is free to me. —Tricia C.

With our Medicare Advantage Plan, part of my wife’s retirement package, my Revlimid copay is $37. —Keith K.

Celgene’s Patient Assistance Program for those with private insurance reduces the cost of Revlimid and Pomalyst to $25 a month (otherwise it would have been $600). Not enough people know about this. There is no longer any income test to receive the discount. —Rick R.

We hope these suggestions can help patients access the treatment they need. For more information, use HealthTree as a tool to find treatment and clinical trials that best fit your myeloma. 

About Author

Erika Johnson

Myeloma Crowd Editorial Contributor, Nursing student, and cancer advocate.

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