Note to self: politics and cancer are personal

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

Baseball and Congress; ya gotta believe

I'm not much of an athlete, but I've always been a baseball fan. Growing up in the suburbs of New York City, I was fortunate to spend many weekends at Shea Stadium, watching the New York Mets. My parents, like many Mets fans of their generation, had been Brooklyn Dodger fans until the Dodgers deserted Brooklyn for LA. Being a real Brooklyn Dodger fan meant sticking with a team year in and year out, that frequently disappointed. My parents always told me that becoming Mets fans once the Dodgers were gone was logical for two reasons; they weren't the detested Yankees, and there was always hope for a winning season, but they would frequently let you down, like their Dodger predecessors.

I was there, on a very cold October night at Shea Stadium, during the 1973 World Series. It was so exciting, and there was so much hope, with Tug McGraw's cheer of "ya gotta believe." But ultimately the Mets lost the series.

Making change in Washington can be a bit like being a Mets fan. But April 14 and the weeks since, have been a winning streak for childhood cancer survivors and their families. You'll remember from my previous blog that the Children's Cause for Cancer Advocacy had it's first lobby day on April 14. 42 survivors and parents went to Capitol Hill to ask members of Congress to support HR 4450, Pediatric, Adolescent, and Young Adult Cancer Survivorship Research and Quality of Life Act. The meetings that these advocates made had a direct impact, with 7 additional members of Congress agreeing to co-sponsor the bill since April 14! And, a Senate version of HR 4450 was also just introduced, by Senator Hilary Clinton.

This is really just the beginning for this bill. All of us can make a difference and it will take the collective voices of survivors, friends and families to move this bill through Congress. We have to be patient and PERSISTENT. 42 advocates told their stories, and members of Congress listened. So, we can like those fans who only care about their teams when they are winners. There will be loses, and there will be wins, but "ya gotta believe."

As a side note, since I have been in Washington, DC for almost 10 years, my adopted baseball team is the Nationals (I still root for the Mets too). The Nats started this season with a miserable record of 7 consecutive loses. Now, they won 7 out of their last 9 games.

Tug McGraw had it right.