My adventures with CML began back in May of 1996. At that time, local doctors gave me a time frame of 1 to 3 years. So I went to MD Anderson in Houston, TX get their opinion. Since a match was not found for me to have a stem cell transplant, I joined in their research program for an oral medication (more about this in a bit). Happy days! I’m writing this blog 16 years later. Now comes the interesting part. Yes, you do have to put up with a few inconveniences, such as fatigue, some muscle cramps, and it is hard remembering to take your pills every day at the same time. I solved the remembering part by putting a little white board inside the cabinet where I keep my pills to check off that I took them. But the biggest pain is finding a way to pay for the drugs at a reasonable price. Oh, by the way at this time, I am in complete remission (PTL).
In the early days, my life was sustained by giving myself daily shots of interferon and ara-C. This kept me alive, but was not really getting rid of the leukemia. In 2001, my great healer Dr. Jorge Cortes enrolled me in that research program using an oral therapy then called “STI571.” That was the magic bullet that got things rolling. While in the research program, the drug was free. When it came to market as Gleevec, with 2 different policies I had through my wife’s health insurance, my co-pay was $20 and $10. The policy we now have with my wife’s current employer covers 70% of the price of the drug (which is now $9,112.83 a month before any insurance coverage), 30% is what we pay (WOW).
I called the drug manufacturer, Novartis, to see if there was help available. They gave me a number of organizations to call, including Patient Services Incorporated (PSI). PSI supplied co-pay assistance for about two-thirds of my co-pay for 3 years. Now, the cost of the drug keeps going up and so far, my part went from around $490 a month to $670-something a month. Then, in the latter part of last year, I got a letter informing me that PSI would no longer provide assistance. Well, now what am I going to do? I just can’t afford around $2,700 a month to pay for Gleevec and it is hard for me to anticipate how I will pay for it in the future if the cost keeps going up. I take 600 mg (1.5 pills) a day. By the way, you must never cut your dosage because this drug keeps your leukemia from returning. If any changes are made it should be done with your doctor’s advice -- I am sure he or she will monitor you closely.
I called Novartis again and told them of my plight. They told me if PSI no longer supplied help, try LLS. I worked with the LLS Patient Services Manager in Texas to identify other resources. I was told by various groups that there was no longer co-pay funding available at this time for those of us with CML. With patience and still blessed with a clear mind for understanding details, I called other organizations that had been suggested to me by LLS and the other organizations I had been in touch with. I left messages and waited for calls back. It took weeks. Then, I discovered the answer to my quest from the good people at Social Security. In my case, I am on Medicare part A and B. It is used as my secondary insurance as my wife’s plan is my primary for hospital, doctors and drugs. I signed up for Medicare D through CIGNA and can use it for secondary drug or co-pay assistance because of SPAP (state pharmacy assistance program).
Right now, this is far better than what I was paying before. This coverage pays three-quarters of the 30% of my share of the drug cost. And, once I reach the catastrophic cost stage of $4,700, my co-pay drops to around $133 per month. Overall, it will save me around $2,000 a year. Unfortunately, just the other day, I was informed that I would now owe $445 per month for my co-pay, making my yearly savings only about $500 per year. I am still calling my insurance and trying to figure out why there is a difference all of a sudden. Glory be when Gleevec goes generic. By the way, I am 71, still working, ranch, and take care of my wife, dogs, cats, horses, ponies and miniature donkeys. Keep a positive attitude and don’t let taking a few pills get you down.
- Geoffrey Michael (Survivor)
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