Online since August 2002
Culture, Politics and Technology

The remarkable FDA-approved cancer treatment no one knows about

Imagine, if you will, that there is a remarkably safe and effective treatment for one of the nation's deadliest and most common cancers that works better than any other available treatment. Now imagine, if you can, that doctors aren't telling their patients about this treatment because they don't make as much money administering this drug as they do other, less effective, more toxic drugs. This eerie scenario couldn't possibly be happening anywhere outside a sci-fi screenplay, could it?

Medical symbol Yes, it could.

Fewer than 10 percent of patients who are suitable candidates for the drug that works best in treating non-Hodgkin;s lymphoma, which is the fifth most common cancer in the United States, are actually receiving this treatment. It seems preposterous and unthinkable, but it's a fact. The so-called standard first-line treatment for lymphoma remains chemotherapy and/or a drug called Rituxan. However, study after study shows that a treatment called radio-immunotherapy (also known as RIT) simply works better and is less toxic, with fewer side effects.

The latest studies from the American Society of Hematology show that RIT gives patients substantially longer remissions (about four and a half years, compared with about three for chemo patients) and significantly fewer side effects than chemotherapy and/or Rituxan. But very few patients are using or are even aware of RIT, largely because oncologists aren't telling them about it – and in some cases because oncologists are actually telling their patients not to try it.

Why? Several reasons, ranging from inequitable reimbursement rates for doctors to unfounded fears by patients and even some doctors that this treatment is dangerous and problematic because it has a radiation component. Zevalin and Bexxar, the two RIT drugs currently approved by the FDA for treating non-Hodgkin's lymphoma (Zevalin was approved in 2002, Bexxar in 2003), are different and competing drugs, but they're somewhat similar and both are effective. However, doctors are not paid to administer these two drugs the way they are with chemo or Rituxan. Putting it simply: doctors have financial incentives to use other drugs.

Because RIT drugs are radioactive, they are almost always administered in hospitals, not doctors' offices, and as a result doctors aren't paid by Medicare and private insurers for prescribing them as they are when they give patients more common treatments such as chemotherapy. In addition, using either of these RIT drugs usually requires oncologists to coordinate treatment with academic hospitals, whom the doctors may view as competitors. And some doctors' clinics are simply not set up to administer the drug at all, which means that if they tell their patients about RIT they could lose that patient altogether. As a result, many doctors prescribe Bexxar and Zevalin only as a last resort ... and yet it still often works better than chemo or Rituxan.

Consider the implications: Many people are dying sooner than they have to. And for no good reason. This story should be on the cover of every magazine and the front page of every newspaper in the nation. It should be an Oprah topic. It should be discussed on "Face the Nation" and "Meet the Press" and on the floor of Congress and in the Oval Office.

I have never seen a situation where you have an approved cancer treatment with so much promise and efficacy that facesa the possibility of dying on the vine. It is, in a word, outrageous!

This story has gotten some media attention, from Newsweek ("How Washington Is Nixing a Cancer Cure") to the New York Times ("Market Forces Cited in Lymphoma Drugs' Disuse"). But when it comes to cancer, patients pay closer attention to their doctors than they do to the media. And that's the way it should be. If only doctors were telling their patients what they need and deserve to know about all their treatment options.

Just what is RIT and why does it work?

Basically, this treatment works by combining monoclonal antibodies with tiny amounts of radiation. Antibodies, both natural and man-made, recognize and seek foreign substances that invade the body and then mark the invaders for destruction. Ideally, this action triggers the body's own immune system into attacking the diseased cells and causing them to self-destruct. This is how Rituxan, a very popular monoclonal antibody used in the treatment of lymphoma, works. But RIT takes monoclonal antibodies a step further. Instead of relying solely on the body's immune system to attack diseased cells, it also carries radiation directly to them.

There are numerous false notions about RIT, and unfortunately not enough oncologists are doing anything to dispel them. For example, there is no evidence that it increases the risk of secondary concerns any more than chemotherapy. It's also not true that there is too little data to make an informed decision about RIT. An enormous amount of data has in fact been collected in the nearly two decades since trials for RIT began in 1990. Meanwhile, tens of thousands of lymphoma patient who could potentially benefit from this treatment remain either unaware of it entirely or remain misinformed.

Call me biased if you like. After all, I was saved by radio-immunotherapy nearly 11 years ago. My cancer journey began in November 1996 when I was told that I had stage IV non-Hodgkin’s lymphoma. A few days later I began a brutal regimen of a type of chemotherapy called CHOP that made me very sick but put me back into remission for about two years. When my cancer made an unwelcome return in early 1999, I was determined to find a treatment that would give me a longer remission and fewer side effects.

I surfed the Web, reached out via phone and e-mail to dozens of people with the same cancer, read as many cancer books as I could get my hands on, researched every possible cancer treatment (traditional, experimental, holistic and even off-the-wall), contacted cancer organizations and support groups, and even tracked down the creators of several lymphoma drugs and spoke to them personally.

After poring over all the information I'd accumulated, I made the decision to enroll in a phase three clinical trial of RIT. My oncologist wanted me to do chemo again, of course. And some of my friends thought I was crazy. But here I am, 11 years later, cancer-free and now wanting others to learn about RIT so that it might save them. I am among a tragically small handful of cancer patients that have opted for RIT.

The fact that one of them, Zevalin, was finally approved by the FDA as a first-line treatment just a few months ago should change things. Significantly, in September 2009, the FDA approved Zevalin for front-line use in combination with chemotherapy (known as consolidation therapy.) That means that for the first time, lymphoma patients can now take RIT when first diagnosed. Bexxar will likely gain the same front-line status soon.

It is my hope that eventually both Zevalin and Bexxar will be available as a front-line stand-alone therapy (without chemo). The trials for this are very promising, too. But that could be a while. Meantime, these drugs deserve a higher profile in the cancer community and deserve more respect. The studies speak for themselves. RIT is of course not for everyone. There are numerous treatments for lymphoma that are effective and FDA-approved, and many more in the clinical trial pipeline. I simply want lymphoma patients to be aware of all their treatment options and make informed decisions.

It's up to cancer patients to learn about ALL of their treatment options. Listen to your doctor, but don’t rely on only one voice, only one source. It isn't up to the doctors to empower patients, it is up to the patients to empower themselves. RIT is just one weapon in the increasing arsenal to battle non-Hodgkin's lymphoma, which is an insidious yet treatable and beatable disease.

But RIT saved my life, and it could save your life or the life of someone you love.

Published February 2010

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