Why I hired an oncologist as my private consultant when I had cancer

Back in February, 1997, I was, I believe, the first person in the world with intermediate grade non-Hodgkins lymphoma to be treated with what's now the world's biggest selling cancer drug, Rituxan, a monoclonal antibody that inspires your own immune system to target cancer cells, like a smart bomb goes right to the enemy headquarters, while traditional therapies like chemotherapy are like carpet bombing. (Ritxuan had already been proved to be safe and effective in treating people with "indolent" lymphatic cancer, so it didn't take any courage on my part to choose this drug.) So, I'm a big fan of market forces on the supply side of medicine.

On the demand side, I'm not so sure. One issue that's seldom talked about is that people trust their doctors too much and don't realize that their doctors may have different interests than they do.

Here's a NYT article about two even newer drugs that I had heard about in 1997 as the next generation of NHL treatments after Rituxan. Because lymphatic cancer is so diffused throughout your body, you can't use radiation therapy because you'd fry much of your body. So, Bexxar and Zevalin cause your immune system to deliver tiny bits of radioactive material directly to the cancer cells.

Market Forces Cited in Lymphoma Drugs’ Disuse
By ALEX BERENSON

The patients’ stories sound nearly impossible.

After an hourlong infusion, Linda Stephens, 58, has been cancer-free for seven years. Dan Wheeler, three years. Betsy de Parry, five years. Before treatment, all three had late-stage non-Hodgkin’s lymphoma, a cancer of the immune system, and a grim prognosis.

All three recovered after a single dose of Bexxar or Zevalin, both federally approved drugs for lymphoma. And all three can count themselves as lucky.

Not just because their cancers responded so well. But because they got the treatment at all.

Non-Hodgkin’s lymphoma is the fifth most common cancer in the United States, with 60,000 new cases and almost 20,000 deaths a year. But fewer than 2,000 patients received Bexxar or Zevalin last year, only about 10 percent of those who are suitable candidates for the drugs.

“Both Zevalin and Bexxar are very good products,” said Dr. Oliver W. Press, a professor at the University of Washington and chairman of the scientific advisory board of the Lymphoma Research Foundation. “It is astounding and disappointing” that they are used so little. The reasons that more patients don’t get these drugs reflect the market-driven forces that can distort medical decisions, Dr. Press and other experts on lymphoma treatment say. A result can be high costs but not necessarily the best care.

The drugs have not been clinically proven to prolong survival, compared with other therapies. But patients are more likely to respond to them than standard treatments, and trials to test whether the drugs do have a survival benefit are nearly complete.

Other, more thoroughly tested lymphoma drugs are preferred as first-line treatments. But doctors often repeatedly prescribe such drugs even after they have lost their effectiveness — and when Bexxar and Zevalin might work better.

One reason is that cancer doctors, or oncologists, have financial incentives to use drugs other than Bexxar and Zevalin, which they are not paid to administer. In addition, using either drug usually requires oncologists to coordinate treatment with academic hospitals, whom the doctors may view as competitors.

As a result, many doctors prescribe Bexxar and Zevalin only as a last resort, when they are unlikely to succeed because the cancer has advanced. “Oncologists use everything in their cupboard before they refer,” Dr. Press said. “At least half the patients who get referred to me have had at least 10 courses of treatment.”

While Bexxar and Zevalin help many patients, only a minority become cancer-free for many years. But clinical trials indicate that they are as good as or better than other treatments. When the drugs were approved, analysts expected they would be used widely.

But the drugs have run into an obstacle that so far has been impassable. Because they are radioactive, they are almost always administered in hospitals, not doctors’ offices. As a result, doctors are not paid by Medicare and private insurers for prescribing them, as they are when they give patients a more common treatment, chemotherapy.

In addition, most oncologists outside academic hospitals treat many different cancers and may be only vaguely familiar with the drugs, said Dr. Andrew D. Zelenetz, chief of the lymphoma service at Memorial Sloan-Kettering Cancer Center. “There are a number of barriers,” Dr. Zelenetz said.

Dr. Press and Dr. Zelenetz acknowledge that they have their own financial incentives to support the drugs. Dr. Press has been paid to speak at medical education seminars sponsored by the makers of the drugs. Dr. Zelenetz has been paid when the companies sponsor clinical trials at Memorial Sloan-Kettering. But both said the money was a small part of their total income and had not colored their views.

Some patients say they would not have received Bexxar and Zevalin if they had not demanded them. Mr. Wheeler of Kalamazoo, Mich., said he received Bexxar in April 2004 only after insisting on it when his lymphoma recurred. “I told my local oncologist, I want Bexxar, you give me a referral,” Mr. Wheeler said. “I’ve been a real pain.” ...

Both drugs are very expensive, costing about $25,000 per treatment. But one dose is usually enough. The cost of the drugs is similar to a full four-month regimen of chemotherapy and Rituxan, another lymphoma treatment. ...

Because lymphoma is relatively common, and Rituxan costs $20,000 for a typical course of treatment, it is the top-selling cancer drug worldwide, with sales in 2006 of $4 billion.

Doctors agree that Rituxan is an excellent drug with only minor side effects for most patients.

Still, the few head-to-head clinical trials that have been conducted show that Bexxar and Zevalin are as effective as Rituxan, if not better. ...

Advocates for the drugs worry the companies may stop making them. Biogen Idec said in October that it might shed Zevalin. Although the company continues to manufacture the drug, it no longer actively promotes it. [More]

One problem with the current system is that seems to be considered vaguely
"unethical" by the medical profession for a patient to pay one doctor to be his consultant and help him choose among other doctors. That's just nuts. If you are a corporate executive assigned some complex once-a-decade task, such as choosing a new email system for the company, it is standard practice to hire a consultant to help you decide among competitive offerings. But not for cancer patients, who suddenly find themselves besieged with novel technical information about potential treatments. You are supposed to trust your doctor to refer you to an oncologist, and take it on faith.

Fortunately, when I was diagnosed with non-Hodgkins lymphoma in 1996, a computer consultant at my marketing research whose wife was battling cancer gave me the name of a suburban Chicago general oncologist who was willing to be employed as a consultant to help me choose among the clinical trials offered by the three top lymphoma specialists in Chicago. After each of my appointments with a specialist, I'd call my consultant and we'd review what the expert had to offer me. (Also, unusually for a doctor, he'd charge me for our phone discussions. For some reason, it's traditional among American doctors to provide phone calls for free, which is a reason they always insist you come in for a visit -- they can charge for that. But it was a three hour round trip to his suburban office, so he agreed to charge me by the hour for phone calls, which was a huge convenience.)

My consultant helped me pick out the absolute state-of-the-art clinical trial, the only one featuring Rituxan. That may well be why I've been in remission for 10 years and one month -- i.e., why I'm still here. (By the way, once you are past five years in remission with NHL, the chance of a relapse is no higher than a random person who never had NHL developing it in the first place.)

I doubt that many employer insurance plans would pay for my expensive four opinion plan of attack these days. But, I also doubt that many governments, not even Michael Moore's sainted Cuban regime, would pay either.

My published articles are archived at iSteve.com -- Steve Sailer