Fall 2009: Jake and Nancy learned that Nancy's breast cancer was stage four. Winter 2013: They are still fighting. This is a gathering place to follow their story, offer support, love and prayers... to be by their side.

Sunday, May 8, 2011

National Breast Cancer Coalition NBCC - Washington DC

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.

Lobby day was especially disappointing and I left feeling that our government is completely impenetrable. I don't think I'd bother to do that again and don't even feel compelled to send letters or emails to lawmakers because I think it is a waste of time. It was interesting to be on Capitol Hill and walk the halls of the Senate and House office buildings, but that was about it.

I'll end on a brighter note. The highlight of the conference was the Emerging Leaders program of the NBCC, a group of young, articulate women who are future leaders of health policy. It was refreshing to see gals in their 20's using their talents and energy to support the mission of NBCC. Next steps for me will be to connect further with these young women and encourage them to continue fighting. I also might go back to DC in June for the hearing on Avastin. Even the most staunch Avastin opponents at the conference encouraged me to do this, saying that there has been a precedent of the FDA overturning their decisions based on patient feedback, so we'll see.

Long post, sorry about that, my brain is just so full of new ideas I had to share.


Larry Asher said...

Nancy, thanks for a really interesting -- albeit frustrating -- look inside the workings (non-workings?) of government. I do want to believe that a powerful personality with a captivating story can somehow get through to lawmakers juggling a thousand competing interests. You could definitely be that person, so if I can support you in any way (and I mean it) to get in their face, please let me know.

Amber Lanier Nagle said...

Thanks for sharing your experience. I just happened upon your post while doing research about the NBCC and their direction and approach. Very interesting.