Admission - I'm a brain tumor survivor, a cancer patient advocate, and I go to a lot of meetings. I feel passionate about my work and sometimes take a strange pride when a meeting, particularly one that I lead, is successful. Saying, "boy, that was a good meeting!" is a surrogate for "we had a robust (one of my favorite words) policy discussion which might (after numerous additional meetings) result in additional research dollars for the National Institutes of Health,"
or "we brought together hospitals and organizations to discuss a program for young adult survivors and just getting them in the same room at the same time is really great."
I realize that this is how the world works, particularly the non-profit world.
Then Senator Edward Kennedy was diagnosed with a brain tumor days after he led a Senate hearing about new cancer legislation he is proposing. It was a pretty good meeting.
Senator Kennedy's diagnosis reminded me of how fortunate I am to have survived 14 years, and knowing the variety of painful treatments ahead for the Senator, great sympathy for the him and his family. Suddenly, I saw him less as a champion of quality health care in the US and more as a fellow brain tumor survivor.
Senator Kennedy's illness has brought significant media attention to brain tumors. The New York Times had an article today, "Hints of Progress in Drugs Treating Brain Cancer." The article discusses two new brain tumor treatments. One doubles brain tumor survival from 15 months to 30 months. The other adds 2-3 months to a patient's life. Among childhood cancers, which, like brain tumors are considered a group of rare diseases, only one new drug has been developed in 15 years. Sorry, that's just not good enough.
I know that it takes time, years, to develop new cancer therapies. And rare cancers including brain tumors are at a disadvantage because of limited investment from pharmaceutical companies. But more meetings, even when we "do good meeting," isn't enough. Senator Kennedy's cancer diagnosis and every time we interact with a person dealing with cancer, or the challenges of being a survivor, is a reminder. We must bring the urgency of the needs that cancer patients are facing TODAY.
Let's keep Senator Kennedy and every cancer patient in our thoughts and remember them when we walk into the conference room for the next meeting.
-craig
or "we brought together hospitals and organizations to discuss a program for young adult survivors and just getting them in the same room at the same time is really great."
I realize that this is how the world works, particularly the non-profit world.
Then Senator Edward Kennedy was diagnosed with a brain tumor days after he led a Senate hearing about new cancer legislation he is proposing. It was a pretty good meeting.
Senator Kennedy's diagnosis reminded me of how fortunate I am to have survived 14 years, and knowing the variety of painful treatments ahead for the Senator, great sympathy for the him and his family. Suddenly, I saw him less as a champion of quality health care in the US and more as a fellow brain tumor survivor.
Senator Kennedy's illness has brought significant media attention to brain tumors. The New York Times had an article today, "Hints of Progress in Drugs Treating Brain Cancer." The article discusses two new brain tumor treatments. One doubles brain tumor survival from 15 months to 30 months. The other adds 2-3 months to a patient's life. Among childhood cancers, which, like brain tumors are considered a group of rare diseases, only one new drug has been developed in 15 years. Sorry, that's just not good enough.
I know that it takes time, years, to develop new cancer therapies. And rare cancers including brain tumors are at a disadvantage because of limited investment from pharmaceutical companies. But more meetings, even when we "do good meeting," isn't enough. Senator Kennedy's cancer diagnosis and every time we interact with a person dealing with cancer, or the challenges of being a survivor, is a reminder. We must bring the urgency of the needs that cancer patients are facing TODAY.
Let's keep Senator Kennedy and every cancer patient in our thoughts and remember them when we walk into the conference room for the next meeting.
-craig
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1 comment:
Great post and i couldn't agree more.
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