The aftermath of Angelina Jolie’s announcement on May 14 has sent the telephones at genetic, cancer and breast centers ringing off the wall. FORCE, a nonprofit dedicated to improving the lives of those affected by hereditary breast and ovarian cancer, reported calls to their hotline quadrupled within 36 hours. Multiple Genetic Centers from around the country said they could not answer all the phone calls.
It should not come as a surprise to us that celebrities can impact medical care. Other celebrities have had similar situations and breast cancer and breast cancer treatment. However, the higher on the A-List in Hollywood you are, the larger the reaction. Our society is obsessed with celebrities and their culture. If we are interested in what they wear, where they eat, or where they vacation, surely it is logical that there would be an interest in their medical conditions.
It was a brave and courageous announcement that Angelina shared her plight with us and that we reacted to it. Many women, who did not have the correct family history for the genetic testing, called or visited a website to obtain further information. Wikipedia announced the page describing the gene, BRCA 1, was viewed nearly 30,000 times the day of the announcement.
This increased interest in the gene testing may or may not be a good situation. The U.S. Preventive Services Task Force has stated that 90 percent of women with family histories not linked to increased risk of the BRCA genetic mutation would not benefit from genetic counseling or testing.
The number of women who carry the BRCA gene mutation is very small, less than 1 % of women carry either BRCA 1 or 2. The gene mutation is responsible for 5 to 10% of breast cancers and 14% of ovarian cancers. Women with the BRCA gene mutations are 5 times more likely to develop breast cancer than normal women. The National Cancer Institute places the risk for ovarian cancer at 30 times the average.
Angelina’s announcement has focused the public eye on family histories linked to breast cancer. This important reminder is good for the patient and the physician. Some patients that have been advised to seek genetic counseling and testing have not done so. It is very cost prohibitive and not a test that is paid by Medicaid and Medicare limits coverage to those who have had cancer. The test itself can cost as much as $3,000. The test is patented by Myriad Genetics and this singular patent is responsible for the cost of the testing. The American Medical Association is challenging this patent before the U.S. Supreme Court. The Supreme Court is expected to rule next month.
The National Cancer Institute says that about 2% of women have high-risk family histories and may benefit from referral for genetic counseling and potential testing. A list of high risk factors for genetic testing is available from their website.
In this age of expensive and state of the art technology, it is amazing that we have so little to offer these women except a surgery that requires more than 6 weeks to heal and is extremely disfiguring.