Sunday, June 21, 2009

Breast Cancer in Young Women - Concerns About the EARLY Act

The EARLY Act (Education and Awareness Requires Learning Young Link to text of bill )has been introduced in Congress. The bill calls for $45 million to fund programs teaching young girls and women BSE (Breast self-exam) and promotes education about prevention as well as genetic testing for inherited risk of breast cancer. It has been supported by a number of national organizations, including Susan G. Komen for the Cure, the Young Survival Coalition and Living Beyond Breast Cancer, but not by National Breast Cancer Coalition or Northern Ohio Breast Cancer Coalition.

NBCC's analysis of the EARLY Act is at this link:

Among other others, epidemiologist Dr. Leslie Bernstein and Dr. Barnett Kramer, director of the NIH Office of Disease Prevention, have also taken strong positions against the EARLY Act.

What follows is a letter from Dr. Otis Brawley, chief medical officer of the American Cancer Society, to ACS volunteers about the controversial EARLY Act recently introduced in Congress.

Dr. Brawley's letter:

"I want to put in writing my concerns regarding the EARLY Bill. So many
emotions are flying, some folks can better understand if they have something in writing. You might use this letter to at least help people understand where I am
coming from. This is an opportunity for dialogue and an opportunity to do something positive. I truly would like to work with others to make a bill that is scientifically sound.

"The authors of the bill clearly want to do the right thing and that should not be doubted. As I do not question the good intentions of those writing this bill, I ask that people not question my good intentions.

"Unfortunately the bill as introduced is a public health bill that does not recognize public health as a legitimate scientific discipline. It applies diagnostic information from the American Cancer Society and National Comprehensive Cancer Network websites as if it is screening information. It calls for an advisory committee with expertise in every discipline having to do with breast cancer except public health and screening.

"This bill is unfortunate in that it represents a wasted opportunity to do good for a population that deserves attention, the very population that the authors want to help. If implemented as written, it can actually cause harm. If implemented, a number of women will seek genetic testing and find out that they have "mutations of unknown significance." Some of these women will seek a bilateral mastectomy. Many of these women will in reality have mutations of no significance, but our science cannot determine most of these yet. There are already scientific data to show that many women getting these messages will suffer significant emotional and mental harms.

"The overall tone of the bill makes the problem of breast cancer in young women and genetic causes of breast cancer seem far simpler than it is. It accepts as fact things that public health experts think of as research questions. For example, my public health colleagues would overwhelmingly agree that we do not know if screening programs using examination, mammogram, magnetic resonance, or genetics save the lives of young women (less than age forty) with breast cancer. Fooling ourselves into
accepting that these interventions have been proven to save lives does a disservice to young women with breast cancer.

"This program, if implemented, will diminish the effect of more pertinent public health messages on tobacco avoidance, good nutrition and physical activity. These are messages that have the potential to save far more lives than a breast cancer awareness campaign. These messages aimed at young women can save far more lives from
cancer compared to a breast cancer awareness campaign and will prevent deaths from diabetes and cardiovascular disease. The doubling of the obesity rate in young women over the past thirty years is the greatest threat to their health.

"I do realize the desire to do something in breast cancer and I accept the need to do the right thing regarding breast cancer. We need far more psychological and medical support for young women who have breast cancer. We have data to show that there are women who need treatment and cannot get it. We need more research to develop and validate the lifesaving abilities of screening technologies.

Please note, I stress validate the lifesaving abilities of screening technologies, because too much emphasis has been put on early diagnosing disease and not on if that diagnosis saves lives. Of course, we also need to find and validate ways of preventing the disease. All we can do now is encourage early pregnancy and do bilateral mastectomy. Neither is one hundred percent effective. I will also agree that most physicians do not understand the complexities of the issue.

"I have consulted a number of experts in breast cancer screening, diagnosis, treatment and outcomes in coming to my opinion. I realize that I will be criticized for not supporting this bill. I will be criticized primarily by those who refuse to realize I am truly concerned about the health of young women and I really want to do the right thing. Too often I have seen the easy, feel-good path in medicine result in harm."

NOBCCF commends Dr. Brawley for speaking out on this important issue.

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