Wednesday, June 10, 2009

One Voice Against Cancer

So, I am back from DC and so energized, it was fantastic! Our first get together was all day Monday. Monday was our briefing day and the day we were told our specific "ask". For those that don't know, when you lobby and meet with your congressman, you are typically asking for something specific.

Our "ask" basically consisted of four point:

The first was for them to follow through with the president's statement of doubling the National Institutes of Health (NIH) budget in the next 8-10 years. The first step would be a 10% increase in funding for NIH, 20% for the National Cancer Institute (NCI), and 10% for the National Center on Minority and Health Disparities (NCMHD). It basically amounts to $3 billion for NIH, which includes $1 billion for NCI and $21 million for MCMHD. In approving this for fiscal year 2010, it would be a great start towards doubling the budget AND closing the gap from the Bush years when funding was stagnant and actually declined when biomedical inflation is taken into consideration. Money to NCI and NIH would allow brilliant young researchers to not have to worry about money for funding. We lose so many researchers to private sector, other counties, etc. because they cannot get funding, it is truly sad.

I find it fascinating that in fiscal year 2007 each dollar of the NIH's nearly $23 billion investment generated more than twice as much in state business activity. It was essentially $2.21 return for every $1 spent. Think that helps our economy both local and national??

The second point was to support a $471 million increase for the Centers for Disease Control and Prevention (CDC) cancer programs. These state based programs are vital in our communities. They help with cancer screening, monitoring, surveillance and prevetions. 565,000 Americans die each year from cancer and 1/3 of these could be prevented.

The third was for support of full funding for the Patient Navigator Program. We were asking for $18.6 million which would do wonders in helping the low income communities navigate a very complicated health care system upon diagnosis. We all know a cancer diagnosis is overwhelming, combined with a crazy health care system and it can be down right frightening.

Our 4th and final ask was for an 18% increase to the Food and Drug Administration (FDA). This amounts to a increase of $374 million. The FDA has been underfunded for so long that some amazing drugs are in a log jam for approval. It can take up to 17 years for a drug to get approval!! 17 years, that is unacceptable when some of these drugs could be saving lives. An increase would provide the FDA with resources and staffing necessary to integrate the cutting edge science and streamline from discovery to application of these trials.

Tuesday was our day on the hill. Melissa Wilhelm (co-founder of Chicago Livestrong army with me) and I were paired up with a few others from Illinois. Our first two stops were Senators Burris and Durbin's offices. Sen. Durbin has always been a HUGE supporter of ours, the crapshoot was Burris. We met with a staffer there and while he could not commit to those numbers, it sounded as if they would really support us.
We then met with Representative Davis, Quigley, and Jesse Jackson Jr. All three of whom were extremely supportive.

Now, the meetings are pretty unpredictable. If they are super busy, you may have to walk around the halls with them, meet in the waiting area or in the best case scenario a conference room or large office. The way we attacked it was I would do the introductions and start off with my story, Melissa would then tell her story (stage 4 NHL survivor), then we would go with the "ask" and why this was important. One meeting, with Congressman Danny Davis' staff, I will never forget. I start off with my story and the guy doesn't really say much, you can tell he is listening, just very tough to read. Melissa goes with her story, again, silent and intent on taking it all in. Finally, he looks at Melissa and says thank you. Thank you for coming here today and telling your story. His mom is an 18 year breast cancer survivor. He had tears in his eyes and he turned to me and said that he knows our families are happy that we are here and alive. He said they may not say it all the time, but they truly are. I teared up, Melissa teared up and he said what I've always said....a cancer diagnosis is so hard on the family. Families have no control and his mom's struggles changed his life, he did not know if she would live and he was so happy he did. He said they would do whatever they could to help us and were 100% behind us. I live in a damn good district and won't be moving anytime soon:)
Melissa and I left that meeting so touched and energized.

All in all it was an amazing experience. Our Senators and Representatives are all supportive. They all feel that us being there is a breath of fresh air. It is one thing for lobbyists to come in and ask for research dollars, but when constituents who have been personally touched by cancer come in, it means so much more. They know that telling our emotional stories 5-7 times a day is not easy, but it is necessary. We have to stay on top of all our congressman to keep them honest and make sure they follow through with the support they promise. I am confident that we will make a difference and uniting with 40 different organizations is a powerful thing. We need to mobilize people are the United States to do the same thing. Write them letters, call their office, email them. Whatever you can do will make a difference. They have to listen to us, there are 12 million survivors in the United States, talk about a powerful lobbying group. If they are flooded with people asking for money and they want to get re-elected, they will have no choice but to act on this.

So let's work together on this, unite, and make a difference! Be well, Livestrong, and Keep Climbing!!

Joe Schneider

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