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The Burden of Health Plans Not Keeping Up With Innovation

We are working hard for chemotherapy parity legislation around the country. So far this year we have seen legislation passed in Nebraska, New Jersey, Delaware, Maryland and Virginia. While we are working on this state by state strategy, we are also looking towards a future win in Congress. This month, to build momentum for our upcoming lobby day in Washington, DC, we would like highlight stories of patients who have faced outrageous co-pays for their lifesaving medications. These are the folks we are fighting for with these critical pieces of legislation.

Here is Robert Adler’s letter to his Congressman:

Dear Representative John Campbell,

A few years ago, I was required to take Revlimid, an oral chemotherapy medication, for my multiple myeloma. I took the medication for thirteen cycles, each consisting of three weeks. Fortunately, I was covered by insurance. Unfortunately, it only covered 50% of the medication cost. This meant that my out of pocket cost for each cycle was $3,200, or $41,600 for the total treatment.

Not believing that my portion of the medication could possibly be $3,200 per cycle, I contacted my insurance company. The lady I spoke to - a cancer survivor herself- verified the information and suggested that I talk to my doctor about having an intravenous chemotherapy treatment. I had already received that (Velcade), and it was for this reason that my oncologist decided on this current course of treatment. The lady I spoke to was correct in that it would have been far more financially advantageous to me had I had intravenous chemotherapy; even if it was not the proper treatment for my illness. The insurance would have picked up 100% of the cost after I met my plan's annual out of pocket limit of $3,500.00. The oral medication was not subject to this limit.

What puzzled me was that although the IV option would have been more beneficial for me financially, it actually would have cost the insurance company more than if they had picked up the whole tab for my Revlimid. As incredible as it sounds, I checked my explanation of benefits’ (EOB) from when I had received the intravenous chemotherapy and verified that the insurance company would indeed have spent less money if they had paid 100% of the cost of the oral medication. As a result, the lady’s suggestion that I talk to my oncologist to see if there was an IV option, while good financial advice for me, would actually have cost her employer more money!

Representative Campbell, I was lucky to have a support network that enabled me to take the medication despite its outrageous cost. Sadly, this is not the case for most Californians. I urge you to take a minute and consider how much a person must earn just to be able to cover $41,600 for oral medications in after tax dollars. Add to that the other medical costs that they would be likely to encounter (insurance, doctors, lab tests, etc.), and all their living expenses. It is not very hard to see that they would need a six-figure income. Seeing that the median household income in California from 2006-2010 was $60,883, you can see that most people would not be able to afford the medication that has saved my life. Does it make any sense that people should die because their insurance company doesn't reimburse oral chemotherapy the same way that they treat intravenous therapy?

I am asking you, please, to co-sponsor HR 2746 and to put oral chemotherapy within the reach of all insured Californians, so that they might survive their cancers, as I have been blessed to have survived mine.

Sincerely yours,

Robert Adler

Robert’s story is, unfortunately, one that many myeloma patients face every day and that is why it is our priority to fight for equal access to oral anti-cancer medications. If you would like to share your story with the community, please contact Grassroots Liaison, Aimee Martin amartin@myeloma.org.

Also, consider joining us for our “virtual” lobby day on June 26th where from your own home you can help us reach our goal of contacting 100 legislators in one day. We will have more information to follow. Or participate in our Postcards for Parity Program, where we are bringing the importance of this cost discrimination to federal legislators’ attention all year long.


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