July 13, 2007

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

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


Anonymous said...

Health care is basically like everything else in life... a trade-off. We need to drop the free-market/socialist dichotomy and find something that works. Hearing Giuliani and Clinton talk about health care is like listening to the vapid debate over the Iraq War, where both mainstream positions were palpably asinine. Michael Moore and the Insurance companies both have it wrong. That would be a great place to start. How about writing off all medical debt over 10,000$ for those making under 50,000$ in the tax code. Simple steps can be taken to increase access to medical care, stop the debt machine that is killing anyone without insurance and ruining families. That'd be a great place to start 'reform' and stop the bullshit finger pointing between the two-party shell figures who nonstop posit moronic black/white pc dichotomies on every single issue to appease their funders. America and its banal Kleptocractic oligarcy, need more be said?

Anonymous said...

There's not really any reason to expect Medicare to jump in and cover something like that. It was twenty years behind private insurance covering prescription drugs (which actually have an effect on health, rather than doctor visits) and its perverse incentives discourage higher quality treatments in favor of a large quantity of treatments and procedures, regardless of how well they work.

Anonymous said...

Informative, "keeper" article, as usual - but just wanted to say, I'm glad you're still with us!

Anonymous said...

"So, I'm a big fan of market forces on the supply side of medicine."

I'm not 100% sure what you mean here, so I'll withold the artillery fire. I'll point out though that major advances in cancer treatment invariably come from, ultimately, basic research performed in academia.

People think that the major pharm companies are doing "cutting edge research" - that's BS. They're in the business of making money - as much as possible - on already available drugs, and the "new drugs in the pipeline" are most often licensed to them from smaller biotech (often founded by academics on the research) or from universities themselves.

The problem is that people pay for what they directly receive - the average moron sees no direct benefit from basic research, so that's the first thing cut in the budget (the NIH has been eviscerated by the Bush administration).

Look, without an understanding of the human immune system and the modulation of said system, you'd be dead now. Your cure should be attributed not only to your doctor and the drug companies and "supply side", but to the poorly paid and insecure-positioned researchers who, over the years, made the discoveries that made the drugs possible.

And, by the way, the major pharms seem these days more concerned with "diversity" than "discovery", yet another reason that one can expect most important discoveries to be made by leaner, smaller, less "diverse" biotech as well as academia.

The bottom line: the non-market forces of government investment in research is going to be required to get things moving. Relying on market economics is not going to get the job done, because economics dosn't cover the "black box" that lies in between basic research and the person being prescribed the new miracle drug in the doctor's office.

The "oncologist" is the last link in the chain. You need to look a bit further upstream.

Anonymous said...


Excellent posting. Thanks for this information.

Anonymous said...

Just to give a perspective from Canada - where socialized medicine is as Canadian as mom and apple pie: While a doctor's office is a private business, going outside of the univeral government health insurance program to hire a doctor as your personal consultant is illegal. If the system doesn't cover it, its against the law to pay for it yourself. And the waiting list for things like biopsies and MRI's is nothing to laugh at either. A now-deceased friend of mine waited for several months for a biopsy while grapefruit sized tumour on his back metastasized. And he had a previous history of cancer.

Anonymous said...

honestly, I feel for the cancer...

BUT get back to the politics of the war...

damn it...

should we pull out or not...

get with it ok...

Anonymous said...

Congratulations on surviving 10 plus years.

Interesting that doctors don't usually charge for phone consultations. Lawyers have no compunction about charging for a phone call from a client.

Anonymous said...

Bruce G Charlton claims much of medical research spending has been a waste and is due for a crash.

Anonymous said...

Any American who gets cancer and survives is entitled to SSI disability benefits for life. Steve Sailer, I have a question for you. You are a conservative, as indicated by your posts. Are you also getting SSI/disability payments?

I do not look down upon it. As a leftist populist (who is also against mass immigration because it helps the elite and hurts the workers), I supprort government payments such as SSI for people like yourself.

But as a conservative, you should not support SSI. Hypocrite much?

Anonymous said...

Very valuable information, Steve.

Anonymous said...

Steve's case would not be covered by SSI by the way.

Steve Sailer said...

Damn, I better see if I can get my money back on the Jet Ski and Segway I bought today expecting a decade of SSI backpayments.

Anonymous said...

I work for a large HMO and have never seen Bexxar and Zevalin used for our lymphoma patients. However, if I am ever diagnosed with lymphoma I will scream bloody murder until I get the treatment!

Anonymous said...

> Any American who gets cancer and survives is
> entitled to SSI disability benefits for life.

This is NOT TRUE. What is true is this: Any American worker
(1) who has paid enough into the Social Security system AND
(2) they paid enough of those taxes in the last five years (too bad for stay-at-home parents, people who were trying to start a business instead of being a wage-slave, and those who took a couple of years off to care for disabled family members) AND
(3) is totally (100%) disabled to the point that they can't earn even a minimum income (currently less than $250 a week, I believe) AND
(4) that disability is expected to last for more than one year AND
(5) they can assemble sufficient medical reports to prove all of this
will qualify for disability.

However, it's only "for life" if by "for life" you mean "until normal Social Security retirement age" AND you assume that you never recover enough to be able to work again.

AMac said...

I happen to come across this post... a great read, even six years after it went up, and quite relevant to the early days of implementation of the Affordable Care Act (in the US).

Steve, I'm glad you're still with us, still typing away, still pressing "submit"!