By Jamie Reno
My favorite college journalism teacher once told me I should never start a story with the tired cliché, “It was a dark and stormy night.“ Well, sorry professor, but I’m about to break that writing commandment. Why? Because it really was a dark and stormy night in the fall of 1996, when I nervously sat in my oncologist’s office as he gave me the dire diagnosis: "Jamie, you have stage IV follicular non-Hodgkin's lymphoma."
Cancer?! I could not believe what I was hearing.
A few days later, while still in shock and denial, I reluctantly began a chemotherapy regimen called CHOP, with which I am sure many of you are familiar. It made me really sick but put me in remission for about two years. When the lymphoma recurred in early 1999, my doctor wanted me to do chemo again. My response? "Thanks, doc, but no thanks."
Instead, I told him I had made the decision to enroll in a phase three clinical trial of a then-experimental treatment called radio-immunotherapy, also known as RIT. The drug, Bexxar, which has long since been approved by the Food and Drug Administration (two RIT drugs have, actually: Bexxar and Zevalin), was virtually unknown at the time.
Even my oncologist was only vaguely familiar with it.
But I had done my homework. I'd learned that the percentage of complete responses among lymphoma patients who had taken RIT in trials was higher than with chemo, the remissions were evidently longer, and the side effects were relatively minor.
It was still a risk, but I was willing to take it.
I’m glad I did. I have not been treated for my cancer since, though last fall, after 13 years of remission, we did discover enlarged lymph nodes in my abdomen and I am now in “watch and wait.” Bottom line? Radio-immunotherapy saved my life.
Since that trial, RIT has been the subject of considerable controversy. Publications ranging from Newsweek, my longtime employer, to the New York Times have reported that RIT has not been utilized as much as it should by lymphoma patients for reasons that have nothing to do with its efficacy.
There are all sorts of reasons for this, ranging from inequitable Medicare reimbursements and other money issues to unfounded fears among patients and even some doctors that this treatment is dangerous and problematic because of its radiation component.
But there is frankly no justifiable reason why Bexxar, the drug that saved my life and the lives of so many others, is now being discontinued by GlaxoSmithKline (GSK).
As I was the first to report on my national news blog The Reno Dispatch back in August, GSK has announced that it will stop producing and selling Bexxar in February 2014.
A spokesperson for GSK told me the decision to discontinue Bexxar involved a "thoughtful and careful evaluation of patient needs and the clinical use of the therapy…. There are other treatment options available for patients with relapsed non-Hodgkin’s lymphoma."
But those other options are not as good.
Bexxar and Zevalin, which is thankfully not being abandoned by its manufacturer, Spectrum Pharmaceuticals, are clearly the best option for many men and women who have follicular, the most common type of non-Hodgkin’s lymphoma, which is the seventh most common cancer in the United States.
GSK told me that its “commitment to the oncology community will continue through our efforts to develop and deliver other therapies to help address the unmet needs of patients living with cancer."
Really? I don’t see how a company that is committed to cancer patients dumps this amazing drug. The way I see it, GSK never properly marketed or promoted Bexxar- and now it’s about to go away for good. It's a mystery and a tragedy that a cancer treatment that works so well and has such minimal side effects could not be saved.
I agree wholeheartedly. Big Pharma has a responsibility to the public they serve and that has made them among the most profitable industries in the world. A drug that has such a positive impact should not be allowed to become an "orphan" drug that is solely driven by profit motive. Corporations bear some responsibility to the society that consumes their products.
Jamie, you are so right on! In my opinion the drug companies don't want to do the work to convince the oncologists to prescribe RIT. That is run clinical trials that show clearly that RIT is the superior treatment for a lot of NHL patients. Trying to educate the public has not worked because the public wants to do what their doctors say to do and doctors are not prescribing RIT. How sad for patients clearly the victims because they aren't getting a potentially excellent treatment. Like you, I went out on my own to get a second opinion and was treated with Zevalin in 2004. Thank goodness my ongologist listened to me and got me the treatment I wanted. No recurrence so far. The previous chemo treatments were wearing me out. RIT gave me life and I'll celebrate my 71 birthday in november. I wish we could get your article to all follicular NHL patients. Still kicking!! Jan Waters
Jamie - great report! I am continually confused by the pharmaceutical industry. Now, with the nation's healthcare changes, it's hard to understand why these pharmaceutical companies and HMO's make the decisions that they do. I feel, sadly, that decisions are made for money and profit, rather than for the moral right reasons of caring for those in need. I am glad to know that you and hopefully more people will advocate for the life-saving cancer drugs, Bexxar and Zevalin.
So now what? Who can represent this drug? I'm a sideline cheerleader as our son is currently in remission with FL. However, RIT/Bexxar is always in the back of my mind as ... "someday, maybe.” I see the ASH Conference is to be in December (http://hematology.org/Meetings/Annual-Meeting/?utm_source=CalendarListings&utm_medium=Web&utm_campaign=55thASHAnnualMeeting ). Is there someone of influence and who can speak at this conference?
The petition route has been taken before by proponents of Bexxa: http://www.thepetitionsite.com/1/bexxar/
But I would certainly sign and publicize a new one.
Great article and commentary. I thought i would point out that there are 2 RIT drugs; Bexar and Zevalin. Zevalin is still widely available in the US and is probably the "better" of the 2 drugs. As an oncologist i would also like people to understand that the real reason RIT is not as widely used as it probably should be is because of the way the government regulates the drug which makes it easier for doctors to give their patients alternatives, many of which are more expensive and less convenient. RIT is a great option for patients but unfortunately patients need to be aware of the drug and empowered to ask their physician for it!
I have fNHL, Stage IV, Grade I. I was treated with Rituxan as monotherapy and achieved a complete response to therapy. For the past four years, I have been telling my oncologist that I want to have RIT as my next therapy. He finally agreed and said he had someone at the Cleveland Clinic he would send me to when the time came.
Now, at my last office visit, he said there was a recent study that proved Treanda/Rituxan had better results than RIT. Has anyone heard of this study? I told him that I would rather have a one week treatment versus six months of chemotherapy and I still insisted on RIT (now Zevalin) to which he agreed.
Jamie, what can we do as a group or individually to assure that Zevalin won't have the same demise as Bexxar?