Cancer: 9/11 Every 2 Days
On September 11, 2002 - exactly one year after nearly 3,000 people died during the worst attack on American soil in our nation's history - I was in a small hospital room fighting for my own life. Faces of mothers and fathers, sons and daughters, and brothers and sisters who were killed in that horrific attack flashed across the TV. Any one of them, I suspected, would have traded places with me that morning, even if that extra year of life meant having non-Hodgkins lymphoma (NHL), a cancer of the immune system that I'd been battling for eight long months.
My disease had cunningly resisted the first type of chemo that had attempted to destroy it and it had mockingly withstood the more toxic cocktail that had followed. Fortunately for me, while my hair was departing my head and I was vacationing in the hospital with numerous complications, the FDA approved a new technique for treating my indolent form of NHL: radioimmunotherapy (RIT).
RIT specifically targets and then destroys malignant cells, and because it mostly spares healthy ones, side effects are minimal. Unlike chemo, which is administered over months, RIT is given in two doses a week apart. Better yet, it had sent the majority of patients in clinical trials into complete, long-term, durable remission. Finally, a better weapon to annihilate the disease that was clearly trying to annihilate me.
When treatment was scheduled for September 11, it seemed irreverent to hope for a personal victory on the day of collective national remembrance, and yet my husband Alex and I did hope. Early that morning, we settled into a tiny room where the drug soon began its mission, and we prayed that it would find and destroy every malignant cell in my body.
Six weeks later, there was no evidence of disease. Alex and I picked up the pieces of our life, fully expecting that RIT would take a prominent place among the smorgasbord of treatment options for this deadly disease. Sadly, we were wrong.
In 2007, The New York Times explained that "oncologists have financial incentives to use drugs other than Bexxar or Zevalin (the two RIT drugs), which they are not paid to administer." The Journal of the National Cancer Institute elaborates. "RIT is far from ideal for the medical oncologists (who) must refer patients to radiation oncologists or nuclear medicine specialists and then coordinate treatment. This involves more effort...and it means less money...So RIT, viewed from the standpoint of the medical oncologist's convenience and financial compensation, has problems."
Memo to oncologists: having lymphoma is inconvenient for us patients, too, and the value of our lives trumps your compensation.
It would be one thing if RIT were simply a ho-hum treatment, but scientific studies show that it produces more complete responses and longer durations of response than any other single treatment that's available. Yet eight years after winning FDA approval, the two RIT drugs are still caught in the health system's for profit stranglehold that has limited access to between 5 and 10 percent of the patients who might benefit from them. That's like sending the finest emergency crews and state-of-the-art equipment to rescue 5 to 10 percent of the victims of any tragedy and sending the bucket brigade to help the rest. Wouldn't we all be outraged? Just as maddening, targeted therapies like RIT have been hailed as the future of cancer care, but interest in developing RIT drugs for other types of cancer has waned because the RIT drugs for lymphoma have not been commercially successful.
Cancer claims 1,500 Americans every day. That's 9/11 every two days. And it's simply unacceptable, especially when lifesaving treatments like RIT are available for some.
Yes, I'm grateful that eight years ago today, RIT restored my health and kept my family whole, but my celebration is tempered with respect for the families who lost loved ones on that tragic morning a year before RIT rescued me. And my individual triumph over cancer is overshadowed by sorrow for the families who will suffer so long as profit takes precedence over people.
Betsy de Parry is the author of The Roller Coaster Chronicles and host of a series of webcasts about cancer, including an episode about RIT on October 14 with Dr. Mark Kaminski, the University of Michigan physician who co-developed one of the RIT drugs. Find her on Facebook or email her.
Beginning next Friday, Betsy will examine the experience of illness and the process of recovery in The Roller Coaster Chronicles blog here at annarbor.com