Angelina Jolie’s op-ed in the New York Times was big news this morning. Jolie shared her family history of cancer, her own genetic mutation, and her choice to have prophylactic surgery– agonizing decisions faced by other high risk women.
But this is a bigger, more sinister story than one of a celebrity’s personal medical decision. Jolie insists that all high risk women need access to “gene testing and lifesaving preventive treatment, whatever their means and background, wherever they live” and notes that the $3,000+ test is out of reach for too many women. What she does not talk about is why the cost of the test is out of reach for many women.
Myriad Genetics holds patents on the human BRCA1 & 2 genes and therefore is the only company that offers the BRCA test. Other companies say they could provide a better test for a few hundred dollars but this monopoly gives Myriad control over research, testing, diagnostics and development of treatments related to the BRCA genes.
In 2009, Breast Cancer Action joined researchers, genetic counselors and cancer patients in a lawsuit to overturn Myriad Genetics’ patent on the so-called “breast cancer genes.” The case is currently before the U.S. Supreme Court and we expect a ruling this summer.
In describing her surgery, Jolie is focused on reassuring high risk women who might be considering a prophylactic mastectomy that the surgery is manageable and perhaps not as bad as they might fear. She discusses how small the scars are. She talks about “beautiful” results. She insists just “days after surgery you can be back to a normal life.”
In explaining why she is happy with her own choice, Jolie does not explore the many and varied side effects and risks of the surgery she chose. Surgery always comes with risks and disclosures. In addition, breast implants are considered “high risk” devices by the FDA. Four out of ten women who have had a mastectomy will need additional surgery within three years of getting implants.
The effects of surgical oopherectomy (removal of ovaries) on pre-menopausal women are even more serious. These women are thrown into immediate menopause and the subsequent effects which range from the discomfort of hot flashes to increased risk of cardiovascular disease, osteoporosis, and other negative health consequences.
None of this is to pass judgment on or criticize Jolie’s own medical decision but rather to highlight the importance of a balanced discussion, one that includes consideration of the full range of risks and side effects. Jolie shares her own story with the world. She does not—nor should she—provide balanced medical counsel. However happy Jolie feels with her decision, too many women struggle with what they feel are all around bad choices. The call for better options comes both from women at high risk of breast cancer and from women who have already been diagnosed with breast cancer.
The increased risk of breast and ovarian cancer associated with BRCA mutations cloaks an important observation. Not every woman with a mutation will develop cancer in the course of her life. As we grapple with a breast cancer epidemic in this country, we need more research into the mechanisms of breast cancer and true prevention. After 30 years of breast cancer awareness, we are in a perverse situation where the average woman vastly overestimates her individual risk of breast cancer. Most women with breast cancer do not have an inherited genetic mutation. For those who do, there is no question that access to the genetic test and accompanying genetic counseling, free of corporate influence, provides potentially life-saving information. Whether high risk or average risk, all women need access to quality information free of corporate influence and appropriate health care based on their individual choices.
Behind Jolie’s publicity grabbing personal story, is the fact that one corporation owns the BRCA1&2 genes. I invite Jolie to join Breast Cancer Action in our work to outlaw human gene patents, to call for more research into mechanisms of breast cancer, to demand access to information and health care, and to ensure that every woman can make her own health decision after weighing risks and benefits according to her own individual values and priorities.