Dinner With Mort and More
Mort writes of our having dinner and indeed, it was a pleasure to sit with him and his lovely wife for a quiet evening. At last we had the opportunity to meet face to face and to talk about our mutual interests. Let me say first that Mort and I met by phone, when we were first asked to participate in this blog. We met in person briefly last October during the RIT conference that he chaired in Hollywood, Florida, but that was a busy day and we had little time to talk one on one. Finally, last week, we had the time to talk over a leisurely dinner.
All told, Mort and I have "known" each other for about 7 months, but I feel as if we have known each other far longer than that. Our illness - no, I should say, our recovery - brought us together, and from the moment we met, I have known that he was a passionate patient ally. But if you believe, as I do, that the eyes are the windows to the soul, then to see Mort's eyes is to see the deep and abiding compassion for all of us who have been affected by this disease. As a cardiologist, Mort spent his entire career helping others, and now the doctor turned patient brings this unique perspective to helping those who share our common enemy - NHL.
One of the topics we discussed was how pleased we are that so many of you are learning about RIT and asking if this treatment is appropriate for you. We are all fighting a big bureacratic battle to increase usage of this treatment. While careful studies have shown that RIT is the most effective treatment given in the shortest amount of time, frankly, radioimmunotherapy is underutilized because oncologists must refer their patients to nuclear medicine physicians or to radiation oncologists who then administer it. They are not reiumbursed when they refer their patients to these other physicians. Additionally, in order for them to refer their patients, the Nuclear Regulatory Commission has placed nearly impossible requirements for licensing.
Both Bexxar and Zevalin are multi-disciplinary drugs, meaning that their administration requires collaboration between oncologists and nuclear medicine physicians or radiation oncologists. Until the requirements for licensing and the system of reiumbursement is changed, it is unlikely and unfortunate that the use of RIT will be widespread, regardless of how beneficial it may be for patients.
This is not the first time in medical history that patient welfare is at odds with "the system," and it means that we as patients are the only ones who can determine whether RIT is right for us or not, and that requires finding a doctor who is experienced in RIT and who does use this life-saving treatment. "The system" has placed this demand on us, as patients, the very people who don't need additional stress!
I think I can speak for Mort as well as myself when I say that we are pleased to hear you asking questions about RIT. We are pleased that you are trying to find doctors who administer it. We are pleased because we honestly believe that RIT is an important, even life-saving, treatment that can benefit far more people, and it is our goal to share whatever knowledge we have so that you have the best possible chance of making the right decision for yourself.
Betsy