How We Do Harm (21 page)

Cancer would be different.
Here, a core strategy was being executed through a coordinated, generously funded National Cancer Program.
This strategic approach promised to produce a specialty rooted in evidence rather than trial and error and the tyranny of scientific potentates.
The emerging treatments for cancer would be grounded in clinical evidence and reason.
A rational basis would mean that medical decisions in oncology would be straightforward.

I had some understanding of the weapons we were using to defeat cancer.
Our chemotherapy drugs seemed good.
It seemed logical that more drug would have a greater effect than less drug.
Anyone who died of cancer died because they didn’t get enough chemo.
Doctors at NCI were experimenting with heroic doses of chemotherapy and
dose intensity
was the most important piece of the jargon of the era.
Finding dose-limiting toxicities and kicking them out of the way was the name of the game.
No one thought twice before taking a patient to the threshold of death and “rescuing” him at the last possible moment.

Massive doses of cytotoxic chemotherapy could destroy bone marrow.
However, harvesting bone marrow before the start of treatment and reintroducing it after infusing massive doses of drugs would make it possible to cure cancer and let the patient recuperate.

Biological therapy seemed even more promising than chemo.
I believed that we would soon develop the ability to mobilize the body’s own power to fight cancer.
The immune system would be trained to home in on rogue cells and, with precision, eradicate the disease.
The year 2000 seemed to be a realistic target for finding the cure.

I felt as if I were a GI shipping out to Europe in the final months of the war, just before the Battle of the Bulge.
There would be a few big battles and a lot of mopping up.

What would I do after victory?
I had a plan: after completing the NCI fellowship, I would apply for a White House fellowship that would allow me to combine medicine with policy.

Imagine the challenges that would emerge after the cures were found.
We would have to decide who got the cures first and how quickly.
How would income, race, age, the severity of sickness, and the chances of cure figure into the formula for distribution of cures?
Would a less sick prominent person get the cure before a sicker obscure person?
In terms of resources involved and significance for mankind, the postcure era of cancer treatment would dwarf the task of reconstructing Europe under the Marshall Plan.

*

AS
I look at it now, I see that the declaration of the War on Cancer had more in common with the Spanish-American War than with World War II.
The Spanish-American War started with mass hysteria whipped up by newspaper barons William Randolph Hearst and Joseph Pulitzer.
The War on Cancer was waged in response to a public relations campaign orchestrated by the socialite Mary Lasker and her powerful friends in academia, business, and politics.

Mary, a woman with big hair and big plans, was the widow of Albert Lasker, one of the founders of the modern PR industry.
She had an excellent operational plan for swaying the public agenda on cancer.
She started by organizing an unofficial committee called the Panel of Consultants on the Conquest of Cancer to give the goal the sense of urgency and the appearance of consensus among key leaders.

This unofficial committee hammered the point that the cancer cure was in sight and could be achievable by the 1976 bicentennial of the United States.
This seems absurd now, and—to many—it seemed utterly absurd then.

In 1971, Lasker’s campaign reached its ultimate goal: President Richard Nixon signed the National Cancer Act, a law that made the War on Cancer a presidential priority.
The act created a strong, politically influenced fiefdom within the National Institutes of Health.
Unlike scientists who head the NIH who focused on arthritis, aging, dentistry, or mental disease, the director of the NCI is appointed by the president.
The president also influences the institute by appointing members of the cancer institute’s two principal advisory boards.
One of these groups—the National Cancer Advisory Board—reviews all of the institute’s scientific programs.
Another—the President’s Cancer Panel—is intended to inform the president about obstacles to the cure.

Originally, the latter panel included captains of industry—Benno Schmidt, a financier credited with coining the term
venture capital
,
and Armand Hammer, chairman and CEO of Occidental Petroleum.
Both of these men could call the president and get through.
At one point, the National Cancer Advisory Board also included the much-trusted advice columnist Ann Landers.

Every year, the NCI director submits a Bypass Budget directly to the president.
The word
bypass
refers to the director’s ability to pass over the NIH and the Department of Health and Human Services hierarchy and inform the president how much money is needed to prosecute the War on Cancer.
The Bypass Budget is largely ignored by policy makers, but it remains a quirky reminder of the specialness of the cancer program.

All of this may sound bureaucratic.
But to us, the grunts in the War on Cancer, these special authorities translated into a sense of empowerment.

Another quirk of the war was more tangible: in recent years, the NCI directors have been the highest-paid presidential appointees, earning higher salaries than the vice president of the United States.
This special status—and the boosts in appropriations that accompanied it—created a pressure on NCI directors to overstate the significance of their victories and, repeatedly, to promise the cure.

*

MY
NCI fellowship begins with an administrative mistake.
The orientation packet I receive at a morning meeting instructs me to report to an off-campus office building.
I get on a shuttle bus—a big, dark blue GMC with government plates—and with a few minutes to spare arrive at an office building way out in northern Bethesda.

I can’t spot any other fellows there.
I try to find the office where the NCI meet-and-greet will take place, but no one seems to be able to help me.
After brief, panicked searching, I borrow somebody’s phone and dial the fellowship office, only to learn that at this exact time I am expected on the thirteenth floor of Building 10, the Clinical Center, at the heart of the NIH campus.
Some numskull has screwed up my itinerary.

I catch the shuttle back and, feeling like crap, join the meeting about an hour and a half late.
The two attending physicians at the front of the room are not about to let me slip in unnoticed.

“Dr.
Brawley, you had one thing to do right today, and you didn’t do it,” says one of the two.
“You didn’t show up on time.”
I don’t want to apologize or explain.
The best I can do is bite my lip and mutter, “So this is my welcome.”

As we start the rounds at the Clinical Center on my first day as a fellow, I notice its peculiar smell.
It’s partly a food scent, partly the smell of the building itself.
The Clinical Center opened in 1953, and from the outside it looks something like public housing projects in New York or Chicago.
The place was outmoded by the seventies, but is still very much in use in the late eighties and beyond.

The clinical center doesn’t have an emergency room, and it’s not a hospital.
Rather, it is the place where all of the major NIH conduct clinical research.
The patients’ rooms are positioned alongside a hallway in the front of the hospital, the laboratories alongside a parallel hallway in the back.
This allows you to navigate between bench and bedside.
NCI’s medicine branch has the twelfth and thirteenth floors, sharing a part of the thirteenth floor with the pediatric oncology branch.
The NCI surgery branch has the second floor.

I realize quickly that the place is ruled by warlords.
Some of these men—they are all men—see no reason to control their tempers.
One of my supervisors demonstrates displeasure by smashing a chair against a wall.
We fellows take solace in the fact that he didn’t hit anybody.
Clashes between the department directors could get nasty fast, and their affairs—with secretaries and nurses—are brazenly conducted in plain sight.

*

IN
the mid-1980s, NCI is not exclusively about cancer.
Several of our labs are also trying to find the cure for the rapidly spreading immune deficiency illness, and the Clinical Center is filling with dying young men.
NCI has a large supply of pharmaceutical compounds and an expertise in evaluating them for activity.
Indeed, AIDS—as the disease later came to be known—often sparks malignancies, particularly lymphoma and Kaposi’s sarcoma.

Researchers at the institute ponder the immune system and the role of retroviruses in malignancy.
Sam Broder, the doctor who offered me a fellowship at NCI, along with another NCI investigator, Mitch Mitsuya, found a way to grow HIV (then called HTLV-3) in a test tube.
Suddenly, it became possible to determine how the presence of drugs would affect the growth of AIDS.

This is a desperate time, and the institute is testing just about everything: aspirin, antibiotics, antihypertensives, various exotic compounds.
Some of these drugs are then chosen for testing in patients.

Three years before I arrived, NCI had started to test drugs in a cohort of young U.S.
Navy men who provide a remarkably similar description of how they contracted the disease.
When their histories are taken, all claim to have been infected by a whore in the Philippines.
We fellows are roughly the same age as these patients.
Of course, we can surmise that the young men didn’t get their HTLV-3 from a whore in the Philippines, but the fiction has to be kept up.
If they admit they are gay, the young men would be given dishonorable discharges and would lose all health benefits immediately and forever.

If you are a manly man and if you get your HTLV-3 by paying for sex with a woman, the disease is deemed “service-connected.”
It might lead to a discharge when you get too sick to serve, but the military would take care of your medical costs for the rest of your life.
However, a gay soldier or sailor would be automatically kicked out of the service.

When taking a history, the fellows would look up and, with a straight face, inquire, “The whore in the Philippines?”
The young men would nod.
Even those who had never set foot in the Philippines accepted this prompt.

These young men haven’t received sufficient credit for their role in the wars on cancer and AIDS.
Shortly before my arrival, they were among the first humans to receive AZT, the first efficacious AIDS drug.
AZT was synthesized in 1964, but was shelved after being found ineffective in mice.
It was revived out of desperation when NCI researchers initiated a search for something—anything—that might work against the emerging viral disease that was destroying the immune systems of homosexual men, drug addicts, and prostitutes.

In 1985, Broder starts testing AZT in humans.
Largely, this means our sailors.
Three years later, I would stand in the room when one of our patients—a young man from South Side Chicago—becomes the first human to receive another AIDS drug, ddI.
This is a first-in-human trial, which means that the first patient receives a small dose, which, alas, turns out to be less than enough to benefit him.
Both AZT and ddI are still being prescribed today.

The young men—again, primarily sailors—are also exposed to an obscure, old drug called suramin, developed in Germany in 1916 and used to treat infections caused by parasites: African sleeping sickness and river blindness.
The stuff is not approved in the United States, but can be obtained through the Centers for Disease Control and Prevention.

You can see why Sam Broder would feel compelled to experiment with suramin.
It’s a big, glumpy molecule that looks as if it might gum up the system, blocking the AIDS virus from attaching to a receptor.
In many ways, suramin is similar to AZT, an obscure compound that hardly anyone wanted.
Broder tests suramin in vitro, then tries it in animals.
Ultimately, the tests advance to humans.

In the setting of tropical disease, suramin causes parasites to lose energy and die.
Alas, it’s shown to have the same effect on humans.
Young sailors succumb quickly, without discernible symptoms.
They are weak and look skeletal by the time they die, and in all cases autopsies show the cause: adrenal insufficiency due to adrenal necrosis.
Suramin in high doses kills off adrenal tissue.

At this point, an NCI doctor named Charles “Snuffy” Myers concludes that the adrenal connection could make suramin an important drug.

*

YOU
could go through the NCI fellowship without seeing some common cancers.
For example, in 1988, we didn’t treat any colorectal cancer, the third most common cancer in the United States.
I go through the program without seeing a single cancer of the pancreas, another common disease.

The cancer patients at the NIH Clinical Center are different from patients I saw at the University of Chicago and Case Western Reserve.
Patients at the Clinical Center tend to be better educated and more motivated than the general population.
Everyone has the diagnosis of cancer and is referred by an outside physician.
This, of course, means that they have an outside physician.
They are middle class or upper middle class and insured.
They are folks who take an interest in their disease and an interest in their treatment.
They are folks who ask questions.

However, after a few days at NCI, I realize that I am seeing a lot of adrenal-cancer patients.
In the real world, adrenal cancer is exceedingly rare, a couple hundred new cases a year.
You can practice oncology for forty years without seeing a single case.

Yet here they are: adrenal-cancer patients from all over the United States.
I do a back-of-the-envelope calculation and realize that we are seeing half of all adrenal cancers diagnosed in the United States.
We are seeing more adrenal cancer than lung cancer.

“Snuffy Myers has a Phase I protocol for suramin in adrenal cancer,” a friend explains.
Since autopsy studies found that several AIDS patients receiving suramin had died of adrenal necrosis, Snuffy decides that the drug that was useless in AIDS might work in adrenal cancer.