Hello family and friends,
As some of you know, I have participated in the past in a fashion show for a local breast cancer organization, but this year, Jake took the stage and gave a beautiful speech. The video company that recorded the event was kind enough to post it to YouTube for us. Here's the link. http://www.youtube.com/watch?v=F1SKlbQOaUE
Sunday, May 8, 2011
The trip to DC was energizing, educational, but also discouraging and frustrating. I met lots of amazing women and I was able to network with scientists, doctors, and public policy makers, not the least of whom was Susan Love, MD. ALL women should sign up at Dr. Love's website The Army of Women, regardless of whether you have breast cancer. The goal of her organization is to enroll large numbers of women into research studies, so if you enroll there is a chance you'll be called upon to participate in a study.
The National Breast Cancer Coalition (NBCC), the group who put on the conference and organized lobby day on Tuesday, is an influential, albeit controversial group. They are trying to change the conversation away from pink ribbons, awareness, and early detection to prevention and ending the disease once and for all. I was surprised to learn their position on several issues including Avastin (they applaud the FDA's decision), they are opposed to screening mammograms on women under the age of 50 (yes, 50), and they even oppose breast self exams. Pretty shocking, right? Conventional wisdom about early detection is not the answer, women are dying from breast cancer at the same rate they were 20 years ago. I found myself going back and forth in throughout the conference, trying to decide if I can get behind this group or not. In the end, I am throwing my support behind them and, in fact, am trying to wiggle my way into a position of being able to provide leadership and influence.
During one of the workshops led by Dr. Love, I was able to ask my question, "I have metastatic disease with liver, lung and bone mets. I am a super responder to Avastin, help me understand the FDA's decision." She handled the question well, citing cost (I appreciated her honesty) and said public policy cannot support a very expensive, potentially lethal drug that shows no benefit in overall survival. I argued back that a small number of patients do seem to benefit from the drug, including me. I later learned just how political the Avastin debate really is. The Avastin decision is a shot in the wheel house of Genetech/Roche. The FDA is trying to send a message to Big Pharma to encourage them to figure out who will respond. Too bad individuals like me are getting caught in the crossfire.
There was a lot of bashing of the pharmaceutical industry and our current broken healthcare system. As we all know, there is plenty of blame to go around. The universities and academic medical centers are part of the problem since researchers' incentive is to publish papers, not help patients. Likewise, government funding of research discourages innovative ideas and encourages safe research with predictable results. Biotech and drug companies have an incentive to produce treatments that are profitable, not necessarily those that will end the disease. The only party at the table interested in ending breast cancer is the advocacy community, so I plan to do what I can.
Long post, sorry about that, my brain is just so full of new ideas I had to share.