Missing in Action—The Advocate Perspective
by Barbara Brenner
I’ve been wondering why this meeting feels so different from last year’s, particularly in terms of active participation from the breast cancer advocates in attendance. In 1998, activist questions posed and comments made at the end of many of the presentations brought an important human perspective to the relative risk information and survival curves that dominated the large screens at the front of the room. This year, there are many more activists present than a year ago. Yet, during most of the sessions where information has been presented, virtually no questions have been posed by advocates.
Several things might explain the relative silence of the advocacy community here. The meeting is bigger—there are more than 4,000 people here—making competition for microphone time stiffer than a year ago. Many of the presentations are on very technical matters of cell biology or protein over-expression that are considerably removed from clinical relevance, making it difficult to conceive what the studies might mean for patients. For some of the activists present, this is there first scientific meeting, and posing questions at meetings like these can be intimidating. And the presentation schedule is jam-packed, leaving very little time for questions, and no time in some cases.
But whatever the reasons for the silence, the result is disconcerting. There has been no confrontation of the pill-pushing message of breast cancer prevention. There has been no mention of the absence of studies of potential causes of breast cancer from the research agenda as presented here. With rare exceptions, no one has been required to answer questions about the implications of their proposed treatments for the patient’s quality of life.
I’m not surprised that there are no opportunities here to confront the “pills for prevention” message, or to ask questions about the absence of research into the environmental links to cancer. After all, when I registered at the hotel that is hosting the meeting, I was handed a room key card promoting Xeloda tablets and it’s producer, Roche. After picking up my registration materials for the conference itself, the first exhibitor table I encountered—located just outside the door of the conference headquarters—was AstraZeneca. Many of the advocates are here thanks to scholarships made possible by pharmaceutical companies. And most of the large pharmaceutical companies also make pesticides, fungicides, and herbicides (substances they refer to as “life science” products).
But the virtual silence here on patients’ quality of life is harder to explain. After all, aren’t the doctors as concerned about what it’s like for women to live with the treatments and their consequences as patients and their advocates? Certainly, that has been my experience with my doctors. But on more than one occasion at this meeting researchers have presented studies that clearly ignored important considerations of patient care. Whether the issue was Prozac to control hot flashes in women with breast cancer (where the researcher failed to consider the impact of Prozac on sexual function) or treating with radiation at the same time as Taxol (despite prior studies clearly establishing the danger of this course), the interests of the patient were secondary in far too many cases.
The case of the missing patient had its clearest demonstration today in the presentation by Joe Costantino of the NSABP (National Surgical Adjuvant Breast and Bowel Project—the institution that administers most of the federally-sponsored breast cancer clinical trials) about the use of the Gail model for assessing risk of breast cancer. This model was used to evaluate candidates for the “Breast Cancer Prevention Trial” of tamoxifen and is being used currently to evaluate candidates for the STAR trial (Study of Tamoxifen and Raloxifene). It was presented today as a tool for oncologists to use in evaluating women's risk of breast cancer when considering prescribing a “tamoxifen-like” drug.
A number of activists here are very concerned about information released by the National Cancer Institute in November that indicates that tamoxifen in fact will cause more harm than good in a large group of women over 60. We wanted to know whether the risk disk has been modified to take this information into account and what was being done to alert the medical community about the new information, and we thought that the oncologists here needed know this information as well. Yet when we approached the microphones to ask these questions, the moderator of the session conveniently noted that there was no time for questions. We could and did pose these questions to Dr. Costantino outside of the session, and learned that the disk does not take this new information into consideration, and that relatively little is being done to get the word out about it. But neither the information nor Costantino’s responses to our questions was conveyed to the thousands of doctors who had just heard that they should be using the risk disk.
So this has been a meeting where doctors and advocates worked more side-by-side than together. In the end, that’s a loss for everybody affected by breast cancer.