As we begin HBOC Week and approach Previvor Day 2012, I am again reminded of how far we have come and how far we still have to go in the fight against hereditary cancer. The growth of our organization, message boards, mailing lists, and Facebook and Twitter pages tells the story: more people than ever are aware of hereditary cancer risk and are turning to FORCE for information, support, and resources. This is all good news, but at a recent meeting at the Centers for Disease Control (CDC), the Director of the Office of Public Health Genomics, Dr. Muin Khoury, emphasized that most people who are at inherited high risk for cancer are unaware of their status. Recognizing that identification of people with BRCA and Lynch Syndrome mutations and offering medical intervention on their behalf can save lives, the CDC is now working on an initiative to integrate genomic education and awareness into the states’ Departments of Health.
These programs are sorely needed. On a daily basis through our programs we hear from people who are unaware of their high cancer risk or their options to manage it. The tales we hear illustrate how much work is yet to be done. We hear of high-risk women who are denied breast cancer screening and told that they are too young to have mammograms or that they do not need MRIs, survivors who are not aware of their high risk for future cancers, and people who meet expert guidelines for genetics evaluation but are not referred for genetic counseling. Media reports on screening guidelines often omit the fact that recommendations for people of average risk are not adequate for those who fall in the high-risk range. Some vocal individuals and groups malign genetic evaluation and risk management as unimportant or overtreatment. And stories like the one recently published on BloombergBusinessweek.com show how patients pay the price when health care providers who lack training in genetics misinterpret test results.
But despite these setbacks we have had a lot of wins. Earlier this year a generous gift from Mindy and Jon Gray created the Basser Research Center for BRCA1 and BRCA2 at the University of Pennsylvania. It is the first comprehensive center dedicated solely to the pursuit of research and provision of care relevant to BRCA1 and BRCA2. The United States Preventive Services Task Force incorporated information about BRCA into their recommendations for ovarian and prostate cancer screening. The CDC’s Actions to Save Lives Now, a workshop on incorporating genomics into public health, focused on bringing the public lifesaving education and awareness, and that’s a great step forward. In a few weeks we will host our 7th annual Joining FORCEs Against Hereditary Cancer Conference with record-breaking attendance and participation.
As today marks the start of the third National HBOC Awareness Week and next Wednesday is Previvor Day, our goal is to attract more attention than ever. Let’s focus on the positive, and use this opportunity to save lives through education. We know that risk assessment and intervention can improve survival for high-risk individuals. But people cannot take action if they are unaware of their risk. It is up to us to raise the profile of HBOC until every person has access to the tools, information, and health care experts to assess their risk, and every high-risk person has the eduation, support, and resources they need to make informed decisions about their risk.