I've been a really lucky guy. I have been in remission from multiple myeloma for over 6 years now. One of reasons may be that I have been fortunate to be on a clinical trial that has provided me with continuing maintenance using the drug Revlimid on a daily basis free of charge over that time. As you may know, Revlimid is an exorbitantly expensive drug, one of the most expensive in the world. Lucky me.
Well, my luck is about to change. I just found out yesterday at my monthly Dana Farber visit that the clinical trial I am on is terminating at the end of this month. That means from now on, I will have to pay to continue with my Revlimid maintenance. That's not good.
After my initial shock, I came back home to determine what financial effect that would have. I am in the process of reviewing my Medicare Advantage Plan options for next year, and I have to make a decision by December 7. I looked at my options on the Medicare website and added Revlimid to my list of drugs. That was an eye opener! Fortunately, I have an Advantage Plan. If I only had Medicare Part B, I'd pay list price and my out-of-pocket cost of adding Revlimid would be about $300,000 next year! Holy crap! How could anyone other than the super rich ever afford that? With the Advantage Plan, my expected out-of-pocket costs for Revlimid will be a "mere" $14,000 next year. Whew! I guess I should be happy, but I'm not. That still comes to about $40 per day.
Celgene has the world by the balls and has consistently increased the price of Revlimid over the years to its currently stratospheric levels. They have been able to do this by cleverly holding on to their patents by requiring monthly surveys to assess safety in using the drug (because it can cause birth defects). Good for them...bad for us.
I don't think that I will qualify for any of the financial aid plans that are available out there, because I'm pretty sure I will be over the income limits. I may look into this, but I'm not hopeful.
Now I have a decision to make. Do I want to keep taking Revlimid at these prices and hope that I stay in remission? How important is it that I continue to do this? Maybe I will relapse even if I do continue to take it. Maybe there is some other maintenance drug that is less expensive and might work. Maybe I'm actually cured and don't need it any more. Or maybe treatment options have improved so much over the last few years that even if I do relapse, my survival chances are good. At what price to I decide take a chance by stopping the Revlimid? These are important questions for me.
Today I scheduled an appointment with Dr. Richardson on December 11 to discuss these issues. One of the things I want to discuss is how deep is my remission. Some patients have reached a state of Mimimal Residual Disease (MRD), where less than one in a million cancer cells can be detected. In that case, treatment options are much more flexible than with less stringent conditions. In fact, there are some who say that a response of that level represents a "cure" for MM. I was never tested for MRD (my remission was based on the standard test of less than one cancer cell in a thousand). I had asked Paul last year about getting tested for MRD, but he told me it wasn't necessary since I was on a continuing maintenance protocol. Well, I think that has now changed, right?. I may ask him to test me for my level of remission. If I can show that I am in MRD remission, why do I need to spend $14K a year on an exorbitantly expensive maintenance drug? Inquiring minds want to know.
I'll update this blog once I have some answers.