To any and all advocates who attended the CureSearch Advocacy Days last week - We all appreciate the time and effort you put in last week lobbying Congress to better support childhood cancer.
Would you share your experience here with the rest of the childhood cancer community? If you like, just simply reply to this post.
Hello my dear friends,
I am sorry that I did not make it this year. But of course I am still in the fight. I will always be fighting for the kids and their families till the day that I die. That is my promise.
Amy: I don't have a clear answer to your question. So I will let someone else answer it.
Rob and Steve: Cynthia Duncan sent me the Advocacy Day Agenda and your meeting notes.
I will send my Representative Frederica Wilson FL-17 the agenda. It seems like FL had more productive and promising meetings this year than last year. Unfortunately last year, we met some staff members who did not seem interested. In my heart and in my mind, it meant that they would not convey our messages with a passion.
To all of you: I hope to see you next year. If anyone is interested in the Advocacy Day Agenda for this year, you may email me at firstname.lastname@example.org and I will be glad to forward it to you.
The Hugs for Brady Foundation went to Washington. We were represented by 8 people and it was truly a unique experience. For 2 days we turned into Lobbyists. We were trained by professionals to state our case, to stay on point and to get our message across as quickly and professionally as possible. We had scheduled appointments with both our Senators (Frank Lautenberg and Robert Menendez) and our Congressman (Rush Holt). We also met with the Senators from Vermont (Patrick Leahy and Bernie Sanders) along with Congressman Peter Welch. Actually, with the exception of Senator Lautenberg we met with the Legislative Assistants. Senator Lautenberg happened to be walking by our group and made the mistake of asking Sherrie what we were doing there and for the next 25 minutes she had Frank’s ear and did an excellent job of telling him all about needs of pediatric cancer.
You can help Sherrie and the 40,000 kids currently battling pediatric cancer by contacting your Congressman and tell them not to cut the National Institute for Health’s budget because if the NIH budget gets cut the National Cancer Institute budget will be cut and in turn pediatric cancer research budget of $200 million (or a whopping 4% of NCI’s budget) will also get cut. It’s seems so sad that pediatric cancer receives only $200 million in Federal funding and most likely will be lowered. I am not going to get all political other than to say this amount of funding isn’t enough to do much of anything and if it cut that’s most likely what will happen. Look for yourself, here’s a link to the Department of Health and Human Service’s budget:http://www.whitehouse.gov/sites/default/files/omb/budget/fy2012/ass...
Just one more item regarding our trip to DC; while we only had appointments with 6 legislators we stopped by a total of 38 offices and left behind literature and our message; as Sherrie stated, “this is just the beginning and we will be back.”
This is what you posted:
1: CureSearch is funded by the COG, which is funded by the NCI, correct?
2: Are we making a circuitous argument when we go to our representatives lobbying on behalf of CureSearch, when it's essentially a body funded by the NCI, which is the organization the legislators blame for the lack of funding for pediatric cancers? (I hope that made sense.)
Don't be offended if you already know this but i will explain it how it has been explained, boiled down to the facts.
1: Federal funds do not get directly appropriated to Childhood Caner (thats why we asked for the Carolyne Pryce Walker Act)... The funds for the Act were never written into a budget... (which the NIH, NCI's budget or our legislators should have done through appropriations/earmarks). So, we don't get direct funds...they trickle down through the buracracy of the system. The funds are sent to the NIH, and then the NCI gets their cut out of the massave budget... then the NCI rations it out (mostly on a statistically based structure which leaves the kids short-handed because statistically speaking CC is "rare"). The funds that finally get to CC go to CureSearch as they are the fiduciary representative of the COG. As you know, the structure of the COG is unique and needs someone to distribute the funds appropriately to the pressing needs of the most cutting edge clinical trials. (in a perfect world...right???)
2: Circuitous...No. But, a very good question which needs to be addressed by all the people who advocate and pay out of pocket to attend. I say no because CureSearch is the recipent of federal funds to fund the COG with federal funding. I will also add that the administrative overhead of CureSearch comes from federal funds (and some amazing private sector walks). I am just jumping to another question off of your concern. What's the alternative? There are many fine top org's like ALS and St Baldrick's (just the top 2)...which statistically speaking have much lower overhead as they are private with no federal funding. My only point with this is that CureSearch can do a lot better with our voices...and they need to ORGANIZE AND USE US! We are here and waiting for a STRONG leader in the fight...CureSearch??? WERE WAITING...
Thanks, Rob, for keeping this going.
I guess what I was trying to say was that arguing that our government isn't doing enough while representing a government-funded agency doesn't seem to be getting the attention of the legislators whose minds we're trying to change.
I think it's because of CureSearch's reluctance to call them out (take the legislators and those on the Allocations committees to task) in the media, challenging them on why they unanimously agreed to the CCCA and then didn't step up to fund it. It's been a frustration of mine since we started supporting CureSearch in 2007. It was only when I called out Sen. Arlen Specter (at the time, R-PA) for not co-sponsoring the bill in the Philadelphia Daily News that he agreed to do so (after months of hard work on the part of PA CureSearch reps to get him to co-sponsor.) He was on the Allocations Committee, and clearly didn't truly support the funding (which was made clear to us the next year when I confronted his advisor in our meeting about it, and he repeated Specter's hard line that it was up to the NIH/NCI to make funding decisions for disease-related spending, not Congress. Of course, this was hypocritical of their office since they had backed a larger funding bill related to Breast Cancer Research, but I digress...)
I think many legislators rely on the public's ignorance. They will make a big deal in the media about signing bills that sound wonderful; the follow-up story about what happens after the fact (that most of those bills don't get a dime) is completely missing. It is up to us, the advocates, to get the real stories as to what is happening to government funding for childhood Cancers in the media. What happened to the CCCA isn't the first instance in which funding was promised but not allocated.
The only way we can really influence those who make allocations decisions is to reveal what is happening behind the scenes to the public at large. This can be uncomfortable for those who rely on those very people (the legislators we're challenging) to fund their organization as a whole.
By representing an organization that doesn't rely on that funding to exist (like PAC2 ; ), we can really shed light on how the government has let down our community time and time again when it comes to promises that haven't been kept. If the organizations that comprise PAC2 came together to jointly fund the advocacy organization meetings (and training -- if budgets allowed for supporting advocacy, of course) and the advocates themselves still kept to funding their own travel/lodging, perhaps this could work.
Again ... just thinking aloud.
Please keep the Hugs for Brady Foundation in the loop, we are in full support of PAC2 efforts and want to take a more active role. Thanks...
Thank you all for visiting Capitol Hill this year- we missed it this year, after being able to attend the past 2.... hopefully
we can make it next year!