Wednesday, June 30, 2010

Feeling the Heat on Capitol Hill

The heat was certainly on as we trekked around Capitol Hill last week. We were eager to get the show on the road to D.C. last Monday as we left Chapel Hill at 7 a.m. When we got to the hotel on Capitol Hill, we gathered our information packets, put on our tags and joined in on some training meetings. Did you know there is a method behind the madness of congressional lobbying? Actually, it makes sense.

The CureSearch team looked out onto a room of over 250 childhood cancer advocates – children going through treatment with their families, families of angels who lost the battle with cancer, survivors – excited to ask for appropriations for childhood cancer research. Their message was simple. Make a lasting impression, but do so professionally. That doesn’t sound too difficult now, does it? Well, to be honest, it is quite hard to hold back tears and anger about lack of funding when you have been affected by childhood cancer.

We were to ask for three main things:

(1) Funding appropriated for the Caroline Pryce Walker Conquer Childhood Cancer Act that passed unanimously in both the House and the Senate in 2008, authorizing $30 million dollar annually to childhood cancer research. In the years since the act passed, we have come nowhere near reaching the authorized amount of funding.

(2) Support for the Childhood Cancer Survivorship Research and Quality of Life Act of 2009.

(3) Support in the House of Representatives for the Pediatric Cancer Caucus.

So, by 5 p.m. the CureSearch advocates were armed with information and tactics to use in meetings scheduled with senators and representatives from the 31 states represented at the event.

Following our meetings, we came together donned in CureSearch t-shirts and green bandanas for a CureSearch Walk around Capitol Hill. CureSearch provided four shades of green bandanas, each representing a different connection with childhood cancer, for walking participants.

The lightest shade represented families of angels who lost their battle with childhood cancer.

The lime green was for children currently in treatment.

The grass green was for survivors of childhood cancer.

The forest green was for friends of someone who has or had childhood cancer.

We did not know what to expect as our meetings started at 10:30 a.m. Tuesday, but boy were we shocked by some of them! In the current state of the economy, it is obvious that money does not grow on trees. There is very little money to be had and the childhood cancer community is in a race with many other worth-while causes to get a handful of what is available.

Our strategy: present the facts with a little emotional connection, too. The North Carolina team traveled to our senators’ and representatives’ offices with the mother of a 16-year-old leukemia survivor, a 2-year-old Wilms tumor survivor fresh out of chemotherapy, the mother of 21-year-old who died after battling rhabdomyosarcoma for three years and a 20-year-old brain tumor survivor to name just a few.

Some representatives were very receptive, including Walter B. Jones and Sue Myrick. Our senators were split on the matter. Kay Hagan was very pleasant and pledged her support in any way she could, noting that it would still be very difficult to get funding. Richard Burr was a politician in true form. He held face with us, but in further questioning about what he had told us, it proved false.

After our last meeting of the day, we put our bags in our cars and drove back to North Carolina. Were we successful? We’ll see when Congress releases the 2011 budget.

Tuesday, June 15, 2010

And We're Off...

As things are getting rolling at RAC, I’m getting used to life as an intern for a busy non-profit organization. I have contacted event venues and event coordinators, blogged on the organization’s website, written articles for the e-newsletter, and I’ve recently created my personal website. Please feel free to visit anytime at www.tuckerpetty.com.

With the CureSearch Reach the Day event coming up, we are researching past legislation as well as proposed legislation and appropriations that would benefit the childhood cancer community. Lisa White and the other Rock Against Cancer advocates who have attended the event before are aware of how things work on Capitol Hill during the two-day event. Now, I have to catch up and be ready to make the event a success.

It’s crunch time and I have until Monday morning to become familiar with CureSearch, knowledgeable about legislation and to beo share my story with our Congressional representatives.

CureSearch is an organization that funds pediatric oncology clinical trials at hospitals across the United States. It funds the lifesaving, collaborative research of the Children’s Oncology Group, the world’s largest cooperative pediatric cancer research organization, which treats 90% of children with cancer in the U.S.

Thanks in large part to funding from CureSearch, the Children’s Oncology Group’s research has contributed to the outstanding cure rate of childhood cancer today. Less than 10 percent of children survived cancer in the 1950s. Today, the cure rate is almost 80 percent, and CureSearch’s goal is to raise that rate to 100 percent. Those numbers alone should convince Congress to support appropriations to research.

Who would have figured that so much interesting information would be available to me at RAC? OK, I guess that would be obvious.

Another interesting fact: the U.S. Department of Defense has a long history of leadership in cancer research spanning back to the 1940s. The Dept. of Defense has a pending 2011 Appropriation Request for $10 million of funding to support pediatric cancer research and clinical trials. The funding will be used to support and expand upon existing department-supported research, specifically, genome wide screening for therapeutic targets in high-risk childhood cancer.

Armed with that information as well as some about the Childhood Cancer Survivorship Research and Quality of Life Act of 2009 and the Caroline Pryce Walker Conquer Childhood Cancer Act, my colleagues and I will travel to Capitol Hill with a mission to gain Congressional support for childhood cancer research funding!