In many ways a stem-cell transplant is a crude method of treatment. A stem-cell transplant works by first using radiation and chemotherapy to destroy the patients immune system in an attempt to destroy the cancer that has infected that immune system.  After the destruction of the immune system, it is rebuilt via the transplant during which either the patients own previously harvested stem cells (autologous transplant) or the stem cells from a matched donor (allogeneic transplant) are reintroduced into the patient's body where, if all goes well, they establish themselves in the patient's bone marrow and rebuild his or her immune system.

My prognosis for prolonged remission or even cure is greatly heightened by the fact that prior to transplant, I received not the conventional full body radiation in which, as the name implies, the entire body is radiated, healthy cells and cancer cells alike, but instead radiolabeled monoclonal antibodies (PDF) also known as radioimmunotherapy (RIT), a form of medication that seeks out cancer cells specifically and uses radiation to destroy them. This technique is very effective because it delivers more radiation to the cancer cells and less radiation to healthy cells. The brand names for the drugs used in this technique are Bexxar and Zevalin. (By the way, Alter is mistaken when he says that these drugs are not used for MCL. He is apparently unaware of the trials at the University of Washington where I had my transplant.)

These drugs are very effective. According to Alter:

Several clinical trials have shown that the drugs work for most patients. Some seem to have been cured (we won't know for sure for a few more years), and almost all have seen their lives prolonged, often significantly. According to one clinical trial, patients with follicular lymphoma who received standard treatment achieved remission 36 percent of the time. When Zevalin was added, the figure was 89 percent. Bexxar produced at least some response in 97 percent of patients in one study. Particularly for older patients who cannot handle a stem cell transplant, these are essential treatment options.

"RIT is the most effective, least used treatment in oncology," says Dr. Bruce Cheson of Georgetown University Hospital, who treated Sen. Fred Thompson for lymphoma. (Thompson's mild form of the disease did not require RIT.) Many lymphoma patients, including NEWSWEEK's Jamie Reno, believe they simply would not be alive today had they not received Bexxar or Zevalin several years ago. (My emphasis)

So, why is this happening?

The first reason RIT is in trouble has to do with doctors who work in offices or small hospitals that are not equipped for what is known as "nuclear medicine." Administering RIT requires special licensing and special equipment. Because most oncologists not affiliated with major cancer centers don't have that particular board certification or technology, they aren't likely to recommend that their lymphoma patients go for RIT at a big hospital. If they do, the doctors are more likely to lose patients and reimbursements, because once these oncologists send their patients to a doctor certified to administer RIT, as one specialist told me, "they don't come back." Not all of these office-park oncologists are greedy; some have good reasons to prescribe another treatment. It depends, of course, on the individual patient. But generally speaking, Bexxar and Zevalin are being dramatically underutilized, even though they have already saved thousands of lives.

With sluggish sales, the future of these wonder drugs is uncertain, as The New York Times explained in a front-page article last summer. But what the Times and the rest of the press has missed is that Washington is now poised to deliver the coup de grâce to RIT.

As if it weren't bad enough that these drugs are already being underutilized, the aforementioned CMS has now adopted policies that will make their use even less likely. Effective November 1, 2007 CMS, which has complete complete control to decide which treatments Medicare and Medicaid will cover, has decided to pay less than half of the approximately $25,000 this drugs cost. Hospitals must either absorb the remaining costs or not administer the drugs.

Moreover, you can't pay for the drug yourself because CMS says that if a hospital gives the drug to one patient but denies it to a Medicare or Medicaid patient, they will cut off the hospital's Medicare funding altogether. (This, tactic is part of a broader problem with Medicare, which has continuously cut reimbursement to providers to such an extent  that now certain providers will no longer take Medicare or Medicaid patients.)

This situation is insane.  The efficacy of these drugs is widely recognized, but the CMS has now enacted rules that make it very likely that their life-saving effects will be denied not only to Medicare and Medicaid patients but to all patients.

So, what can we do? It is imperative that you call your Congressional representatives and Senators and inform them that you are opposed to this decision (CMS-1392-FC) by the CMS and ask them to investigate. Remember it went into effect November 1, so there are probably patients being denied the live-saving treatment they need at this very minute.  Follow this link to Lymphomation.org for talking points and step by step instructions on how to call your representatives on this vital issue.

Thank you!

Crossposted at Daily Kos