There are lessons in all this. First, doctors had better be prepared for educated questions and they better have informed answers. Second, the medical industry had better support high-speed, independent channels that inform and empower patients. Industry is either prohibited by law in some quarters from doing that, or by their own onerous regulatory processes. I understand their limits, it just flies in the face of what today’s patients want and expect.
To fill this need well information channels like ours need to work closely with not one hospital or advocacy group, not one expert, but many. It’s what I call “the big tent” approach. We are all in this together and must work together without egos and squabbles to do what’s right for today’s patients. They expect that of us. I am happy to tell you the CLL event is a great example: Patient Power working with the CLL Global Research Foundation, MD Anderson Cancer Center and in collaboration with the Leukemia and Lymphoma Society, CanCare, ACOR.org, and The American Cancer Society. Educational grant support is from AbbVie and Pharmacyclics. My goal is to reproduce this with other events globally, and sustained digital communications and community in several cancer types.
Today I had a meeting with a leader of from MPDVoice and MPN patients in Europe. We were “on the same page” on much of this. So I am heartened, with leaders coming together, we can deliver on what patients want: the latest information to help them be cured or, short of that, to live well with a “chronic cancer; to meet others with the same condition in person or online; and to have the tools to advocate for themselves with their doctors and with government and insurance regulators so they get the care they need and deserve. What’s cool is that the leading doctors support this too, as I heard in my recent interview with Dr. Haifa Al-Ali in Leipzig, Germany. She, like a growing number of here peers “get it” that an informed patient is the best way to move personal care and disease knowledge and discovery forward.
I believe we are on the cusp of big change in several conditions. It’s encouraging. You can still help by adding your voice. If you haven’t already done so, please take a minute to participate in our survey. About 700 people already have but I am reaching for 1,000 responses. Then we’ll have quite a story to tell and a case for supporting the type of activities described above that can help us all.