How We Do Harm (36 page)

Tony says he would be interested, in principle, but if he is to do it, it will have to be for the right reason.
“Lilla didn’t want me doing advocacy as a tribute to her,” Tony reflects.
“She wanted me to move on and live my life.
She was very clear: ‘I want you to be happy.
I want you to live your life.’
But she said all along that this is something you would enjoy and you would add value.”

The path to advocacy at Share and other groups that work through a coalition called the National Breast Cancer Coalition lies through Project LEAD, a series of rigorous weeklong courses on basic science and clinical trials.
If you work through the NBCC umbrella, you take it for granted that advocacy requires education, which means Project LEAD.
It’s not a specified requirement, but people like the course and are proud of it.
Most of the NBCC leadership as well as the leadership of the grassroots organizations that work through NBCC have been through it.

Project LEAD has functioned so well for so long—sixteen years—that it’s taken for granted.
It has graduated about fifteen hundred advocates, almost all of them women with breast cancer.

As an economist, Tony understands statistics and fundamentals of methodology.
Basic science, on the other hand, is something he can use.

He decides to take the course and in August 2010 departs for La Jolla.

*

IN
America, disease gets political fast.
That’s to be expected.
It’s about money: research funds, medical expenditures, entitlements.
What’s surprising is the difference between cultures that spring up around diseases.
Politics is a part of it, as is diversity of beliefs, intellectual climate, and willingness to question the articles of faith.

The levels of curiosity both on the part of scientists and patients can vary wildly from disease to disease.
In part, this variability can be attributed to underlying biology: some diseases are tougher to study, some are less understood.
Demographics—who gets the disease—is crucial, too.
Compare two cancers of the reproductive system: breast and prostate.
In breast cancer, a woman with early disease can be given a choice of treatments and data to help her choose.
In prostate cancer, a guy like Ralph has no idea what to do, and I see no signs of emergence of data to guide him.

In breast cancer, the answers emerged largely because of intellectual curiosity of one man, Bernard Fisher, a surgeon at the University of Pittsburgh, who started asking questions about radical mastectomy in the fifties and sixties, testing his hypotheses and finally getting the answers.

The human psyche is interesting.
We have always done some things, therefore we criticize anyone who questions the wisdom of doing them.
This closed-mindedness and desire to preserve the status quo and avoid change hinders advancement of science.
Doctors are bad for this.

The often-told story of the Halsted mastectomy comes to mind.
William Stewart Halsted, chair of surgery at Johns Hopkins at the beginning of the twentieth century, described an operation for breast cancer.
Taking the breast, including chest-wall muscles over the ribs and going to the third layer of lymph nodes in the armpit (axilla), this “commando” procedure guaranteed the patient would have side effects for the rest of her life.
She would have restricted movement and swelling in the arm on the side of the surgery.

This surgery was probably appropriate for women presenting with large breast cancers, as was common in the early 1900s.
The operation was performed well into the 1970s in Europe and the 1980s in the United States.
Many surgeons questioned its appropriateness for small tumors as early as 1930, but they were shouted down by the surgical mainstream.
The operation was described by Halsted, a near god in the minds of most surgeons.
He was from Hopkins, after all.
Surgeons
round
every morning because the original hospital at Hopkins was round, it was under a dome.

Only in the late 1960s did surgeons Umberto Veronesi in Europe and Fisher in the United States conduct a series of proper studies to show that simply removing the breast, and later a lumpectomy (or simple removal of the breast lump), with radiation therapy was just as effective at controlling the tumor as the Halsted mastectomy.

Women were overtreated and suffered dreadful side effects for years because of a failure to question and, worse yet, the age-old habit of criticizing those who do.

*

GENUINE
public movements begin with conversations.
In the case of NBCC, the conversations began in the 1980s, when political groups focused on breast cancer started to form.
In part, these groups were rooted in the feminist movement.
In part, they were emulating the AIDS movement, an offshoot of the gay rights movement that made AIDS a national emergency.

The breast-cancer movement is all the more interesting because of the role of one book,
Dr. Susan Love’s Breast Book,
which was first published in 1990 and is now in its fifth edition.
Love, then a surgeon at Dana-Farber Cancer Institute, told a story of a fundamental misunderstanding of breast cancer: that clinical trials demonstrated that radical surgery for breast cancer was powerless to change mortality, and that life-threatening forms of breast cancer, even in their early stages, are systemic diseases that require systemic treatment.

There were breast cancer books before Love’s, but hers did something new: it laid out the science comprehensively, in a dispassionate manner, with the sole purpose of helping women make decisions on treatment.
Love knew what was going on in breast cancer.
She had been practicing at the hotbed of more-is-better, the institution where high-dose chemotherapy with bone marrow transplantation was a bread-and-butter procedure.

She fought it tooth and nail, and when Susan Love gets angry, you know it.
Yet, the book is more measured than its author.
“The reason I don’t say breast-cancer care sucks is you will have less influence,” she reflects.
“I think there is a fine line if you want to get listened to, of how you lead people to realize there is a problem without completely pulling the rug out from under them of what they are getting right now.”

Love was not surprised that the book was well received in Cambridge, Massachusetts, and in Berkeley, California.
But, to her surprise, it did well in all states in-between, too.
In June 1990, about six hundred women showed up to hear her give a three-hour talk in Salt Lake City.

“In those days, I was going through the treatment options for breast cancer, I was teaching the whole thing: the surgical, the local, the systemic treatment, and it just seemed to be going on forever,” she recalls.
“It was the middle of the day, the middle of the week, and there were all these middle-aged women there.
I was looking for a laugh.
I was looking to lighten things up.”

So she deadpanned, “We don’t know the answers, and I don’t know what we have to do to make President Bush wake up and do something about breast cancer.
Maybe we should march topless to the White House.”

Love was looking for a laugh, and the line still amuses her two decades later.
“It was Bush Senior, so the idea of these topless women marching on Bush Senior’s White House
was
funny.
And they all laughed.”

After the talk ended, the middle-aged, middle-class, middle American women, one after another, inquired, “Okay, when is the march?
When do we leave?”

This shocked Love.
“Suddenly, it hit me that the time was right.
I knew about breast-cancer groups in Cambridge and Berkeley, but I thought, ‘That’s just Cambridge, that’s just Berkeley.’
But this was something else: Salt Lake City was ready to go.
It was time to do something.”

Later that week, Love and her partner, surgeon Helen Cooksey, were driving to their cabin in New Hampshire.
“I looked over to her and I said the time is here to politicize breast cancer.
And I am afraid that this is the right moment for this.
And I am in the exact right position to do it.
And I gotta do it.”

To this Cooksey replied, “I’ll never see you again.”

*

LATER
that year, in Washington, Love met with Susan Hester, a friend who was setting up a group called Mary-Helen Mautner Project for Lesbians with Cancer.
At dinner, they brainstormed the idea of setting up an overarching organization.
In those days, Love—who can be disruptive unless she multitasks—carried a stack of three-by-five index cards on which she scribbled notes to herself.

Love saw her role clearly, with a surgeon’s precision: “You need somebody who is the catalyst, which is my role.
I can see the vision, and I know it’s the right time, and I can get the people together.
And then you need somebody that’s going to run it, which is not my forte at all.
You really need a hard-ass.
You need somebody who doesn’t back down.”

Love and Hester spoke with all the groups they could locate, getting the conversation rolling.
Then Hester asked a Washington law firm to provide a conference room, and everyone who knew of a breast cancer group or had a list of breast cancer groups started to make calls.
The groups were being invited to a meeting.

The organizers had no idea who—if anyone—would show up.

*

THE
word spread through political and peer-counseling groups nationwide.
Everyone interested was to meet at a set place at a set time in a small conference room in Washington.

More than a hundred groups showed up.

Many of the women who came forward had led movements before, marching for civil rights, protesting the war in Vietnam.
There were also veterans of the women’s rights movement, gay rights activists, and a smattering of Israeli peaceniks.
For that eclectic bunch, street theater was entertainment, being maced, billy-clubbed, and cuffed was the stuff of fond memories of youth.

Fran Visco, a commercial litigator at a Philadelphia law firm, was one of the women who showed up.
As a fifth-grader at a Catholic school, she wanted to be a medical missionary.
During the Vietnam War, she volunteered with the Central Committee for Conscientious Objectors.
In 1987, at age thirty-nine, as a mother of a fourteen-month-old boy, she was diagnosed with Stage II breast cancer.
Two years later, she answered an ad for a support group called the Linda Creed Foundation.

“I don’t have the gene that I’m driven to make a lot of money,” she says years later.
“I have the gene that says I am driven to plague those in power to try to change things for the better, whatever that is.”

Visco showed up at the May 1991 breast-cancer meeting in Washington and later was elected the coalition’s president.
“We wanted to make it a political issue, we wanted to impact the system of research and health care,” Visco says.
“There were groups doing support, there were groups raising money for research through different avenues.
But no one was looking at breast cancer in a systematic, overarching way and saying what needs to change in all of these areas in order to help women.”

This small, core group understood something else: strategy.

“You have to know what you want to accomplish—unless you are just interested in getting more money for breast-cancer research,” Visco says.
“You raise the money and you are done.
But that’s not what we are interested in.
People wanted to march, take out their prostheses, and throw them on the steps of the Capitol.
I think it’s fine to do that, if you do that to achieve a specific goal.
I have no problem with that, but just to do it, it doesn’t get you anything except news coverage.”

From the start, the coalition focused on three areas: access to care, research, and legislation.
To stay focused, they did nothing but breast cancer.
No other diseases, no coalitions addressing broader health problems or women’s political causes.
No sign-on letters.

These people knew how things are wired in Washington, and they knew how these wires could be rearranged.
They did what they had to—and in the first battle, they seized the day.
In 1993, two years after the Washington meeting, they strong-armed Congress to provide $300 million in new funds for breast-cancer research.
That more than tripled the $90 million the NCI was spending before the coalition’s appearance.

The biggest share of new money ended up in the medical-research programs of the Department of Defense, where it is given out through a review structure that involves top-notch scientists and breast-cancer advocates, smart people like Fran and Lilla.
At this writing, the program has funded $2.1 billion in research.

*

WHEN
she showed up at the Washington meeting in May 1991, Visco knew nothing about breast cancer.
She had not read Love’s book and had no idea who Love was.
Now Visco knows a lot: policy, politics, regulations, epidemiology (both classical and clinical), biostatistics, and basic science.
And she is not an exception.
At least fifteen hundred people involved in NBCC know big chunks of what she knows, and some know more.

“We want to have a real impact on this disease,” says Visco.
“We don’t want to just get more money for the scientific community and then just let them do what they want with it.
We wanted to be able to oversee how the funds are spent and collaborate with scientists to set priorities and design research.
To do that, we have to know what we are talking about.”

Yet, in 1991, the founders of the coalition had no plans to engage in systematic, rigorous education of advocates.
This mission evolved as the group started to adjust to its success.

Perhaps one important moment occurred at one of the early meetings of the board, when epidemiologist and breast-cancer survivor Kay Dickersin saw an old acquaintance, Patricia Barr, a Vermont attorney.

The two met at Bennington College, and Kay, who was two years younger, remembered Pat’s role at a teachin in 1969, at a Moratorium to End the War in Vietnam.
These events began on October 15, 1969, and continued on the fifteenth of each month.
Kay remembered a campuswide meeting at a big auditorium, with Pat speaking about some aspect of the general strike.