Cindy’s Legislator Meeting Message

Cindy CMy name is Cindy and I live in NJ. I am a wife, a mother, a friend, a retired educator and a myeloma survivor. I was diagnosed with multiple myeloma, an incurable blood cancer of the plasma cells in July 2008. At the time of my diagnosis statistics said I would survive between 2 -5 years, but here I stand almost 5 years later and I am not thinking about leaving this earth anytime in the near future. Myeloma patients are surviving much longer thanks to the introduction of novel, targeted therapies.

At the time of my diagnosis, my oncologist wanted me to start using Revlimid, a newly approved oral chemotherapy. Clinical trials showed Revlimid to be more effective in treating myeloma than the conventional chemotherapies. My oncologist thought this would be the best treatment for me, but before he prescribed Revlimid he wanted his staff to check my insurance coverage. Since Revlimid is an oral agent it would be covered under my pharmacy plan, not my medical plan like IV chemotherapies. Revlimid costs upwards of $10,000 a month and can be used for years if a patient continues to respond. If my plan required me to pay a percentage of the cost of this drug and not a straight co-pay I wouldn’t be able to follow my doctor’s recommendation because I would be unable to afford the monthly payment. I remember sitting in the exam room for what seemed like hours while the NP checked my insurance coverage. My mind was racing thinking of what I would do if Revlimid wasn’t covered. Would I remortgage my house, would I borrow from my pension, or would I have to try another therapy not recommended by my doctor. A therapy that may not have the OS advantage that Revlimid has. Thankfully, my plan covered Revlimid and the amount I was responsible for paying was the same as the co-pay for the brand drug tier. But I am an exception not the rule. Every year when the new drug formularies arrive from my insurer in December I get butterflies in my stomach until I verify that Revlimid is still covered. That is why I am here today to ask you to co-sponsor HR1801, The Cancer Drug Coverage Parity Act.

Myeloma is a disease of relapsed and remission. Myeloma patients are never really cured. Often patients become resistant to their current therapies and must try new protocols in order to survive. Patients should NOT have to choose a therapy based on how it is administered. Patients should choose a therapy based on their doctor’s recommendation on what trials show is most effective in treating their cancer. Unfortunately, with the high out of pocket costs of oral chemotherapies this often is not the case. Patients cannot afford what is best for them and often there is not an IV or injectable alternative.

If HR1801 becomes law patients will pay the same rate for oral chemotherapies as they pay for their IV/injectable counterparts.

This is good because 35% of the new cancer drugs in the pipeline are oral agents. Please consider co-sponsoring both HR1801. By doing this you will allow all cancer patients to have access to the treatment that is most appropriate to them and live longer more meaningful lives.

Thank you.

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