How We Do Harm (6 page)

Altogether, four randomized trials were presented.
Three of them, conducted in the United States and Sweden, found that the procedure didn’t improve survival.
The fourth, conducted by Werner Bezwoda in South Africa, was remarkably positive.
Alas, a year later that trial was found to be fraudulent.

I am proud to report that Grady didn’t offer bone marrow transplants in breast cancer.
We believed that transplants were unjustified as standard care and should not be available outside well-designed, carefully monitored clinical trials.

*

HELEN
is shaken by what she learns, but she continues to do well, and that’s what matters the most.
She and her husband go out to dinner to celebrate her fifth anniversary of being cancer-free.
Even knowing what she now knows, Helen doesn’t feel betrayed by the medical profession.
She has suffered, sure, but she considers herself cured.

Four years later—nine years after the transplant—a routine chest X-ray shows a lesion on Helen’s lung.
A CT-guided biopsy of the lung shows something that looks like an adenocarcinoma, a slow-growing form of lung cancer.
A CT of the chest, abdomen, and pelvis and a nuclear medicine bone scan show this lesion as well.
Is this lung cancer in a nonsmoker, or has Helen’s breast cancer returned despite the transplant?

The pathologist takes nearly two weeks to perform special stains and even compares the tumor to her previous cancer.
(This is possible because samples of her old tumor had been stored.) His conclusion: the two-centimeter lesion is a metastasis.
The breast cancer is back.

Helen’s doctors bring up the possibility of removing a part of the lung to extract this lesion.
They say this might be the only lesion, in which case the surgery might be curative.
The decision is made to watch the lesion for a few weeks.
During this time, a second and third lesion appear in Helen’s lungs.
Clearly, this is inoperable metastatic disease.
Now, Helen’s only hope is treatment that will prolong rather than save her life.

Shortly after the initial chest X-ray, Helen receives a registered letter from her insurance company.
The letter informs her that she has exceeded her lifetime maximum for health insurance and the company will pay no more.
Facing a recurrence of breast cancer, Helen is pronounced uninsurable.
What are her options?

This middle-class woman who has done everything her doctors told her to do and has been put through tremendous amounts of what is now considered unnecessary treatment that almost killed her several times and cost a year of her life suddenly finds herself uninsured and dying of cancer.

Helen and her husband are earning salaries, which makes them unqualified for Medicaid.
Should she quit her job?
How much longer would she be able to work anyway?
Should they get a divorce so she might qualify for Medicaid?
What kind of doctors take Medicaid?
Helen’s previous doctors did not.

A secretary in the oncologist’s office suggests that she go to Grady, the county hospital.
Where poor people go.

*

I
meet Helen at the breast clinic.
Because of my habit of actually talking with patients, I am running late, significantly late.
Helen exudes discomfort, distrust, and suspicion.
These emotions are hard to hide, especially from clinicians, who sense them as acutely as dogs sense fear.
Is she irritated at having to wait?

She is slim, around five foot five, and has salt-and-pepper hair trending toward salt.
She wears a tweed suit, the sort a businesswoman would wear to work.
Her husband is with her, paying close attention, but saying little.
He is there for moral support—and as another set of eyes and ears.

I think that a couple with such a distinguished and dignified appearance must feel out of place in the clinic’s waiting room.
The cancer center is not as Spartan as the rest of Grady.
It was built with $30 million in tobacco-settlement money, and as the center’s founding director, I got to work with the architects.
Our typical patients are very different from the Williamses.
Some of them are disheveled, some appear not to have taken a bath for a few days, and many look very sick.

As we begin to go over Helen’s history, she quickly explains that she used to be insured, but has lost insurance.
I realize that she is really trying to explain why she is at a public hospital, seeing me.

At Grady, patients simply don’t talk about payment via private insurance, Medicare, or Medicaid.
I am the one who brings up the subject—rarely—only to ascertain that the patients have a way to obtain the medications I prescribe.
If coverage or copayments are a problem, a social worker takes care of finding the money, and, if necessary, Grady picks up the tab.
Some of us like not having to think about fees, coverage, and reimbursement.
That’s why we are able to recruit good doctors to work at Grady.

I sense something else in that examination room, something I have been aware of since childhood: a black patient’s suspicion of black doctors.

*

MY
uncle Fred, a construction worker with his own business and my only close relative with real money, used to say, “You are in trouble if your lawyer, your doctor, and your accountant are not Jewish.”
This belief is rooted in pre-civil-rights days.
Doctors, especially black doctors you didn’t know, were thought to be out to make money off you rather than to help you.
Jewish doctors were perceived to be empathetic, compassionate, and educated.
(Thankfully, Uncle Fred didn’t live strictly by this belief.
He financed a chunk of my medical education at the University of Chicago.)
Black patients’ prejudice against black doctors endures, now more as a fear that you got where you are not by brains and rigorous training, but because of an affirmative action program.
I’ve heard black patients make disparaging remarks about “the
Bakke
case,” a 1978 U.S.
Supreme Court ruling that limited reliance on affirmative action.
Allan Bakke, the white plaintiff in the case, was trying to get into the University of California, Davis, medical school, but was denied admission because the school was taking minority candidates with lower scores.

We turn to Helen’s treatment plan.
She has maxed out on Adriamycin, one of the workhorses of breast-cancer treatment.
She received so much of it in the transplant that an additional dose would likely cause congestive heart failure.
Since Helen’s disease lacks estrogen receptors, hormonal treatment isn’t an option.
“Just to be sure, we should repeat pathology,” I suggest.
“I have had the experience of other hospitals getting it wrong.”

While we are at it, I suggest that we take a PET-CT scan, to see the extent of metastases.
Thanks to the tobacco settlement, I have the best PET-CT scanner in Atlanta.
It’s a fantastic gizmo.
It uses the same scanner to produce positron-emission tomography and computed-tomography images.
This is great, because it combines PET’s ability to register metabolic and biochemical activity with CT anatomical imaging.
This allows you to see simultaneously what’s going on and where it’s happening.

I can see that Helen likes that I am not willing to accept another hospital’s diagnosis.
“Are you aware of the controversy surrounding autologous bone marrow transplantation?”
she asks.
She is testing me.
Am I a happy-go-lucky fool who takes everything on faith, or is there a little rigor in my brain?

I like being questioned.
People who ask questions of their doctor get a better understanding of what’s going to happen to them and are better able to adhere to the prescribed treatment.
They can bring out the best in their doctor.
“Not only do I know about it, I lived it,” I say.
“I trained to be a bone marrow transplanter at the National Cancer Institute.
All of us did transplantation then.”

“Did you do it in breast cancer?”

“No.
Only in lymphoma and leukemia.
But we were training because we were all going to be millionaires working in breast cancer.
Now, being a transplanter in breast cancer is like being a typewriter repairman.”

“Typewriters actually worked.”

“True, but repairing them is a skill that’s no longer needed.
There is actually more work for guys who make horseshoes.”

“Are you familiar with Werner Bezwoda?”

I am indeed.
Werner Bezwoda, one of the pioneers of bone marrow transplantation in breast cancer, had been reporting extraordinary successes treating primarily black women in South Africa.
He was the principal investigator on one of the four randomized trials of bone marrow transplantation in breast cancer.
I sat in the front row at the plenary session of the 1999 annual meeting of the American Society of Clinical Oncology, watching him present.
He seemed calm; there was no twitching, no excessive blinking.

Alas, Bezwoda’s data were fraudulent from start to finish.
He had no research protocol, no set regimen.
Apparently, he made up the data as he went along.
Nonetheless, until the fraud was discovered, physicians all over the world were citing his results and charging insurers for the highly toxic Bezwoda Regimen outside clinical trials.

“Nine years ago, would you have offered me a transplant?”
Helen asks.

“I wouldn’t have, but I would have had no problem with it, if you agreed to take part in a clinical trial and if you understood the risks.
Many people were suing their insurance companies demanding it, and many doctors were blinded by the fact that they made money off it.”

Bone marrow transplantation seemed to make sense logically.
Experts in the field felt it worked, so it had to be good.
Patients bought into this logic and sued insurance companies to force payment for this therapy.
Ten states passed laws making it impossible for insurers to deny payment.

Medicine is especially susceptible to this kind of jumping the gun in adopting new treatments.
Surgeons performed disfiguring radical procedures called the Halsted mastectomies for more than seventy-five years because William Stewart Halsted said it was the right way to treat breast cancer.
Since he was from Johns Hopkins, he had to be right.
An academic physician could get fired for questioning the value of the Halsted mastectomy.
It was deemed irresponsible.

It took an iconoclast—Bernie Fisher, a surgeon at the University of Pittsburgh—to stage a randomized clinical trial that demonstrated that a conservative procedure followed by radiation was equivalent to radical mastectomy.

Suddenly, I realize that the roots of Helen’s mistrust run deeper than reliance on racial stereotypes.
Perhaps she mistrusts me because of my affiliation with a charity hospital and because the color of my skin is the same as her own.
But there is something else—something we share.
Skepticism.

“Do you feel that the risks of bone marrow transplantation were explained to you?”
I ask to make sure that my hunch is correct.

“Not as I look back at it.”

“I am sorry.
You should know that this is not how I operate.
I tell people what I know, what I don’t know, and what I believe, and I label it accordingly.”

Clearly, Helen is a patient who appreciates honesty, a skeptic who allowed skepticism to lapse long enough to receive an unnecessarily toxic, unproven treatment without adequate consent.

Now, her skepticism is back, and it’s an honor to validate it.
I want her to trust me, I want her to give me a chance to do my best to extend her life.

*

A
few days after I meet Helen, a fellow hands me her PET-CT scan.
“It lit up like a Christmas tree,” she says.

Indeed, the scan lights up bright, showing lesions in the spine, ribs, pelvis, lung, liver, and the opposite breast.
I warn her to steer away from such comparisons.
There is a difference between Peace on Earth and metastatic disease.

*

HELEN
becomes my friend and, at times, my conscience.
She helps shape many of my feelings toward health care, the health-care industry, and health-care reform.
I take her to lunch with her breast-cancer-survivor friends.
She crochets a portrait of me.
It is one of my true prized possessions.

She joins Grady’s efforts to reach out to women like Edna Riggs.
A lot of women are treated for breast cancer at Grady.
Indeed, more than 1 percent of all black Americans diagnosed with breast cancer each year get treatment here.
Bringing them into the system requires creativity.

To open our doors wider, Helen helps create a breast-cancer outreach program to encourage discussion about the disease the older black ladies in whispering tones called the Big C.
Helen and other black breast-cancer survivors go into Atlanta’s inner city and tell their stories to anyone who will listen.
They create a gospel choir of one hundred breast-cancer survivors.
I can’t imagine a more spiritually uplifting way to demonstrate that it’s possible to survive breast cancer.

When we get together, we talk about things that matter: life, death.

Helen reminds me in so many ways of the folks who worked hard so I wouldn’t end up on the slab.
I tell her that when I turned thirty, my mother and I sat down to figure out what happened to the kids who grew up with me in the neighborhood.
We limited ourselves to young men born two years before me and two years after.
Of the twelve of us, only three got out of the neighborhood.
The rest were either dead or serving life sentences for capital crimes.

Keeping me alive was a project that involved many people.
There was Miss Asher, a petite, brown-haired woman who taught my kindergarten class at Harry B.
Keidan Elementary School.
I remember us sitting on the floor with legs crossed “like Indians.”
I didn’t like sitting on the floor like an Indian.
I complained about it a lot.
It was uncomfortable.

But Miss Asher was the first person outside my immediate family to let me know that I had all I needed to make something of myself.
There wasn’t a single episode, no single telling anecdote.
It was more profound than that.
She engendered the feeling that I was worthy of her respect.
Every day, she let me know that she would be upset if I ended up a thug or in jail.
She made me feel that I was somebody, that I could do something.
Even more, she made me feel that it was
expected
that I would do something positive.
Miss Asher didn’t stop with me.
She encouraged my mother to find a way to send me to the nearby Catholic school, St.
Cecilia, where I could get the attention and instruction in the fundamentals I needed to flourish.
My parents ultimately agreed to tighten their belts and squeeze out the tuition, which was $50 a year when I enrolled in second grade.