The U.S. Preventive Services Task Force recommendations on mammography, which included advice that most women in their 40s do not need to be screened annually, have generated a firestorm of outrage, concern and political repercussions. Some members of Congress — from both parties have come out against the recommendations and criticized the nonpartisan task force for issuing them.
This is not the first time that breast cancer has become a big political issue, according to Dr. Barron Lerner, associate professor of medicine at Columbia University College of Physicians & Surgeons and author of “The Breast Cancer Wars: Hope, Fear and the Pursuit of a Cure in Twentieth-Century America.” He discussed the history of the politics and the science of breast cancer with KFF Health News’s Peggy Girshman. Here are edited excerpts of the interview:
Q: The guidelines quickly became part of the health reform debate on Capitol Hill, with some people claiming that they’re unfair to women and could lead to government rationing of care. When you heard about the recommendations, is this what you thought would happen?
A: When I first heard, I thought of this as the latest chapter in an ongoing argument between what we might call the pro- and anti-mammogram forces. This is the debate about the science, what the randomized trials did or did not show. Quite quickly, it became also about the politics because, the fact is, this information could be used as a way to cut back on one expensive aspect of health care.
Ideally, one would like to evaluate the current dispute about mammography without that context, but reality is that the economics are going to intrude.
Q: Congress has legislated about breast cancer in the past can you tell us about that?
A: In the late 1990s, Congress passed a bill that mandated that women who had a mastectomy would have their reconstructive surgery paid for. If you think about this, this really doesn’t happen in most areas except for breast cancer, where Congress would act, and say, “This is something we’re forcing insurance companies to do.” But it speaks to the powerful nature of the breast-cancer lobby.
One other time a report came out criticizing mammograms, Congress actually voted — I think the House voted 430 to nothing [ed. note: it was 424-0] — to rebuke that scientific report. So, politics is always intruding into the world of breast cancer.
Q: There was also the case of bone marrow transplantation, a possible treatment for breast cancer?
A: That’s a very instructive story because it also has to do with the issue of randomized data, which we’re trying to deal with in mammography.
In the early 1990s, there was some suggestion that if you did something called a bone marrow transplant, or stem cell transplant – which was a very aggressive treatment for metastatic breast cancer – that women live longer. The studies were very, very preliminary but word got out and women started coming to doctors, essentially demanding the procedure because they thought it might save their lives, or at least prolong their lives. The power of that lobby was so strong that insurance companies began to pay for the procedure, even though it was still experimental and its value hadn’t been proven. Again, you’d be very hard pressed to find examples like that in many other areas.
It turns out that when the randomized studies came through and we got good data — at the end of the 1990s — that treatment was, in fact, no better than standard chemotherapy and caused more harm along the way. So it was not indicated at all. But, again, this was an example of Congress, or the government, sort of sticking its foot where it shouldn’t — trying to do the right thing, trying to insure access for all women who have a serious disease. But if you don’t look at the data and you’re acting based on your heart, or your gut instinct, you often make the wrong decision.
Q: What were the financial implications of that?
A: There was a lot of money involved. Once the insurance companies agreed to pay for that, hospitals and oncologists became interested in offering that treatment and advertised it. So it was almost like a snowball going down the hill. Certainly, once Congress gave the okay, everybody jumped on the bandwagon and at the end of the day, a lot of people had to “put their tail between their legs” because it turned out everybody had jumped the gun.
Q: Breast cancer is one of the leading killers of American women. But so is lung cancer. How do you explain the kind of attention that breast cancer gets?
A: Well, the breast cancer activists have really set the standard for getting your disease onto the map. I’ve done a lot of research in this area, and they’ve done a remarkable job. They took a disease that had some embarrassment and stigma associated with it because it had to do with the breast, which is a sexual organ — at one point in time people didn’t want to talk about that publicly — and they said: “We shouldn’t be embarrassed if we get breast cancer, we should talk about it openly, we should become activists, we should fight for our rights, we should fight for funding for better research.”
All the other cancers sort of lagged behind. And in an interesting way, the fact that breast cancer raises issues of sexuality and maternity turned out to be an advantage. In the old days, it was a disadvantage, but once those issues were put on the table and people were comfortable talking about it, it became the disease to talk about.
There was once an article in the New York Times Magazine that said breast cancer has become the trendy disease, which was sort of ironic because it can be a horrible disease and nobody wants to get it. But in an interesting way, if you did get the disease, all of a sudden there was this whole network of activism behind you.
When you look at a disease like lung cancer, the mortality rate is so high that there are very few survivors. So all of the women that we see who have, fortunately, survived breast cancer and become public figures — there are many fewer of those for lung cancer. So that’s one problem. And also, lung cancer raises the issue of smoking and blame. For the most part, women who get breast cancer aren’t blamed for having the disease. In the case of lung cancer, if you smoke you’re seen as somehow culpable. That’s another reason that it’s been harder to attract attention to a disease like lung cancer.
Q. Or even heart disease?
A. Yes, that’s true of heart disease as well. There often is blame associated with heart disease. Particularly if someone hasn’t followed a good diet, if they’re overweight, if they smoke, if they don’t take their medication, they can be seen as culpable. In that sense it more resembles lung cancer than breast cancer.
Q. Are you changing what you’re going to do in your practice based on these recommendations?
A. Women in their 40s who have seen me have already had a discussion of the pros and cons of mammograms, and they know I’m not as huge a fan as other doctors are. So, the latest recommendations will be the next chapter for me in talking to patients. So my practice will probably change a little less dramatically.
But I do hope that other doctors will be more eager to raise the issue that mammograms for women in their 40s is not as good a test as we once thought.