Published on October 27, 2018
I was diagnosed with chronic lymphocytic leukemia (CLL) in 1996 after a routine blood test. I was 45 and terrified. But with the guidance of other patients I was led to a great team of specialists and a clinical trial that worked – for 17 years!
But I wasn’t cured. And a minimal residual disease test a few years ago signaled that CLL would probably rear its head once again, requiring treatment. That happened last year. For sure, I was unhappy, but I had learned that the wider array of medicines now available could probably knock CLL back again. And it did! What helped me when CLL “reared its head again” was that I was more confident that treatment could be effective and help me get back to a full life. I had spent years participating and hosting discussions with eminent doctors and inspiring patients. This time I knew I wasn’t alone and also that care was improving. I did not enter six months of infusions and, in my plan, high-dose steroid, with relish. But I knew how to march forward as a CLL patient on a plan I believed in. No drama, just get on with it.
The treatment chosen was obinutuzumab (Gazyva) plus high dose steroid. These were infused medicines. My doctor recommended this approach partly for their efficacy but also partly to avoid the cost to me for an oral cancer medicine. I developed a second blood-related cancer, myelofibrosis (scarring in the bone marrow) in 2011 and take an expensive oral medicine for that. My co-pay on Medicare is $680/month. So, taking a second oral for CLL could be very tough.
What is the right choice for you will vary by what will be effective and, yes, your insurance coverage. Admittedly, insurance is a moving target for some of us with changing regulations and co-pays. That’s why I urge all of us to advocate for ourselves and push to overcome any obstacles to getting the care we need and deserve and also to speak up for policies that do not add a huge financial burden to us as cancer patients. The disease is tough enough! Here are some steps I take and maybe you can too: First “go public” tell people about CLL, the improvements in treatment, and how important it is to be able to afford them; get involved with an advocacy group like a chapter of The Leukemia & Lymphoma Society (LLS); speak up to your state legislator or congressman about efforts to ensure affordable care, ensuring access to new medicines, and lowering co-pays. And speak to the media and help them focus on the needs of people affected by cancer.
I am grateful CLL treatment has worked once again and pray it will keep me doing well for several years. While I continue to know I am not cured I am confident there will be other medicines to help me when needed and that by becoming ever more empowered I can overcome obstacles to getting state-of-the-art care. ”
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