I decided to go for it. I agreed to be infused with Rituxan, an antibody therapeutic approved for use in B cell lymphoma. But that’s not what I needed it for. Since the age of three, my own immune system had been destroying my platelets. Platelets are little fragments of cells that help your blood clot. My immune system has been very effective at destroying them, making sure that I only have about 10 – 20 thousand per microliter of blood instead of the usual 150 to 400 thousand. What has this meant for me? Well, I bruise easy. When I get a cold, I get bloodblisters in the soft tissue of my mouth. In the unlikely event of head injury, my increased bleeding time could make the difference between death and life. I’m still trying to decide whether to forgive my conservative doctor who wouldn’t sign the form I needed to play soccer in high school. All in all, not the worst of chronic diseases by any means. But now, I had a chance of getting rid of it once and for all.
Interesting that the new therapy I decided to use was of a type I study for a living. Rituxan is a monoclonal antibody. Antibodies, because of their ability to bind specifically to a target, were hailed as the “silver bullet” for diseases like cancer and autoimmunity. It’s turned out to be more complicated than that. A lot more complicated.
Which brings me to my decision and its aftermath. Because I could continue on my excellent health insurance after being laid off from my previous employer, I could “pay” for the 4 – $10,000 infusions of Rituxan. My hematologists office diligently convinced my carrier that using Rituxan to treat my ITP was justified by sending them a pile of research papers describing results of this “off label” use. I had read many of these myself. In fact, I was probably one of the best informed patients who ever made the decision to take Rituxan. Interesting how even with all that study, knowledge and insight, it’s still another story when you think about taking one of these therapies yourself.
So did it work? In a word “No”. In fact, my platelet count dropped from the high teens to single digits, panicking my doctors. On top of this, my wisdom tooth, which my dentist had been asking me to extract for years, was suddenly acting up. Great timing. It would have been great timing if I was one of the 50% of people who have responded to Rituxan with an near normal platelet count for 1 – 6 years. As it is, I am now being hit with steroids to inhibit my immune system and IV Ig, a mixture of antibodies designed to saturate the system that mediates the distruction of my platelets.
Surprise, even these therapies that have worked in the past for me, are not showing the sustained (1 – 3 weeks) that they used to. It now looks like, after a course of treatment (another $25,000 worth), I can buy myself only a few days of high platelets. Just enough time to get my tooth pulled and a root canal for the one next to it.
As I review this crazy process. The cost. The time. I wonder about the healthcare system and how primitive some of our tools are for dealing with chronic disease (or any disease). It was a decent bet to try Rituxan, but I feel like I’ve become a prime example of the increasing imbalance between the costs and benefits of our healthcare system. Although I trust my doctor had my best interests foremost in mind, I can’t help but wonder about a system that makes it so incredibly lucrative for an oncology practice to sell patients expensive drugs like Rituxan.
A postscript to my story is that a CAT scan, done long after my Rituxan, steroid and IV Ig treatment, suggests I may have some residual spleen tissue that may have been missed or may have grown back after my spleen was removed 37 years ago. Removing the spleen cures ITP in 80% of cases, but it didn’t in my case. Maybe because some of it was missed back then. And maybe the CAT scan should have been done before all the other treatments. Removing this tiny amount of tissue, which could still be the primary site where my platelets are “filtered” out of my blood, could be the real cure I’m looking for. And just in time to get a tooth pulled.