188 Participants, over 40 member level meetings (30% of all meetings), 28 states represented and over 150 total Congressional meetings.


Great job Advocates! Children's Cancer Awareness & Advocacy Day was a huge success!


PAC2 members
Jeremy Bliler, Sandy Barker, Kelly Forebaugh and Kathi Clarke in DC.

If you were there tell us your story here!


 

 

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.

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What we were asking for on Capitol Hill was as follows:

1. Maintain National Institute of Health (NIH) funding which is proposed to be cut by 10%.

2.  Ask...Any and all Congressman to join the Pediatric Cancer Caucus which is a bi-partisan coalition to be champions for our cause and aware of our funding issues.

3. Creating Hope Act...this was just introduced on the floor of the Senate on Thursday. This is a milestone but not an ask, we as advocates just let the legeslative staff know that it is comming.

4. Survivorship Research and Quality of Life Act. Re-introduced (formally HR2109)

The experience as a voice for our children is very rewarding and I encourage any and all to get in the Fight. I have raised thousands of dollars and helped a lot of families that are in our shoes. There is nothing more rewarding than saying Caleb's name and telling his story to our Legislature. We need more support on the hill visits and follow up from everyone. The below asks need to be relayed by all of you to your appropriate senators and representatives.
Congressional feedback was very positive, given the fact that we were not asking for much. All the Legislative aids that I had meetings with were confidant that the Office would not support a cut in the NIH. As for the Pediatric Cancer Caucus we really did not get commitments to this...constituants need to follow up and put them on the spot. Your Congressman/woman is HOME, the session is over, you may be able to make an appointment, THIS WEEK. in your local office to get a commitment...face to face.

As an advocate for the state of California, we were running!  We had so many visits scheduled and tons of “drop off's" (when the office has not scheduled an appointment with us, we drop off the literature stating what our 'asks' are). 

I actually met with more Congressmen/women this trip than my previous 8 trips since our son Christian died 3 years ago. 

Most were open to our asks, but we weren't asking for much appropriations wise.  I found it easy to do the “asks” since the “asks” didn’t involve direct funding for anything.  Most offices know it will be tough to avoid the proposed cut in NIH.  We did ask them to vote to NOT decrease the NIH in 2011, and to increase it in 2012.  We’ll see what happens there.  I’m hopeful!!

I had to sell some on the Pediatric Cancer Caucus because they get hundreds of different caucuses across their desks, and many caucuses don’t do anything.  They don't want to join them all.  When I emphasized that the Pediatric Cancer Caucus is 1.)a PRO-ACTIVE caucus, 2.)planning on raising awareness for the need to raise more funds/awareness for childhood cancer, 3.)no appropriations are needed, and 4.) it is bi-partisan, they were more open to it.  I strongly feel educating our Representatives and HLA (Health Legislative Aids) is vital!  Let them know we have only had ONE drug approved in 20 years strictly for childhood cancer.  That’s it!  The treatment our children with cancer are receiving is over 40 years old. This is one reason it is so toxic to our kids…it is archaic!  The caucus will validate the need to change this unacceptable fact. 

The Creating Hope Act is awesome!  I wish I knew when it will be introduced to the House.  The day we were there (3/17/11), it was being introduced on the Senate floor.  We briefed them all on what it is about.  I would encourage you all to read about the CHA.  It is exciting!

The Survivorship and Quality Health Act is exciting too, but we have no idea when it will be re-introduced.  This makes it hard to sell when we don’t know when it will come to fruition, but at least they were made aware of it.

While some Representatives/HLA’s are less than enthusiastic about our cause, most do get more needs to be done…especially when educating them more about the pathetic lack of funding childhood cancer receives.  I feel stronger than ever that MORE advocates need to be there reminding our Reps about our cause, and MORE D.C. visits need to happen.  I would encourage everyone out there to join us on our next trip to D.C. if it is feasible.   We need more advocates and it is wonderful meeting others who have the same passion and goal as you.

I would love to see everyone on PAC2 write their Representative and encourage them to support our “asks” stated on Rob Whan’s post and on CureSearch’s website.  They need to hear from all of us.

Being an advocate for our children with cancer is so amazing.  We are able to honor our children, and be their voice too.  What a gift!

Sandy Barker

www.goldrushcure.org

www.caringbridge.org/visit/christianbarker

Attachments:

My experience was an educating one.  I typically find myself avoiding government and lobbying politicians.  I was very surprised to see how open these offices are and how easy it is to walk in and talk to an aid.  They really do listen to you - even though they have a "glazed look" and wouldn't be your best emotional listener, they did engage and ask the questions.

 

I was torn with the "asks" however.  I feel like NCI is using the Pediatric Cancer community to lobby to keep the NIH and NCI budgets the same but it does not seem like Pediatric Cancer Research is a very high priority for the NCI.  I would love to see equal effort go towards the decision makers there to do the following:

  1. Realize there are many forms of Childhood Cancer and that not one of them is the same.  Most research would need to happen on multiple fronts (AML, Leukemia, Neuroblastoma, etc) to achieve a truly higher cure rate.
  2. I would also like to see more Pediatric Oncologists within the peer review board for clinical trials at the NCI as well as on advisory committees.  I have done limited research on this but one of the top Researcher Oncologists at the CureSearch training day mentioned that there isn't ONE on these boards.

I also learned that our kids are being treated with drugs that were invented 40-50 years ago.  I also discovered that only one drug has been approved for Childhood Cancer treatment in the past 20 years.  Pretty shocking.

 

Overall, I had a great experience and most feedback was good...HOWEVER... I can definitely see that the difference happens in the follow up and playing the political game of pressuring and collaborating with multiple offices/congressional members and constituents from each region. The action they take is directly related to the relationships and follow-up you have with the member and their Health Legislative Assistant.


I would not look to government to CURE Childhood Cancer in the next few years but we must keep pressure on all fronts. 

I support any and all efforts to cure childhood cancer as well as the path of funding -

 

I had a great partner to roam around with, Sandy Barker!! and we hit over 8 meetings.  My feet were hurting.

Special thanks to CureSearch for putting together this day (including the full day prior for training).  They did a great job coordinating.

8 meetings PLUS 25 'Drop By' visits at 3 different buildings.  That is a LOT of walking!!  Great job Jeremy!

 

This was my second visit to DC for this purpose.  I encourage all of you to be involved, whether it is on a local level calling your lawmakers offices, or going to DC for advocacy days.  Our lawmakers NEED to hear from us. 

 

To re-cap our days in DC....our first day we had several great speakers as well as Advocacy Training.  We heard from:

John Lehr, President and CEO, CurSearch

Chuck Todd, NBC White House Correspndent

Gavin Lindberg, Health Lobbyist and father to Evan

Peter Adamson, MD, Chairman COG

Nancy Goodman, Founder Kids V. Cancer and mother to Jacob

Susan Weiner, Founder, Childrens Cause for Advocacy, Mother of Adam

 

Our Advocacy training was great, it was provided by Christopher Kush of Soapbox Advocacy Training.  He really broke it down and simplified it, and we did some role playing.  He is an author of a book called "The One Hour Activist", I think I may pick up a copy myself.  http://www.amazon.com/One-Hour-Activist-Powerful-Actions-Candidates...

 

What we were asking for in our office visits is as follows:

1.  Maintain current funding for the NCI for FY 2011

2.  Increase funding for the NCI for FY 2012

3.  Join the Pediatric Cancer Caucus

4.  Co-Sponsor the Creating Hope Act to encourage drug development for pediatric cancers and other rare pediatric diseases.

5.  Co-Sponsor the Childhood Survivorship Research and Quality of Life Act

 

What we learned in the Soapbox training:

How to present:

Hook  (intro, name and where you are from, specific - street, city)

Line   (Personal Story, and stats such as #1 disease killer of our children, 60% of survivors lifelong side effects)

Sinker   (Unified Request - items listed above)

 

On Thursday we had meetings in 5 offices (WA State), then dropped off packets in 6 more offices, which lead to 2 more unscheduled meetings.  Other than one office, we felt pretty good about the responses.  One office we were told there WILL be cuts across the board and we need to be talking to the NCI about how they allocate the funds.  Good point.

 

The following day I represented Rally Foundation at the PAC2 meeting.  Thank you Bob, Joe and Andy for pulling all of these amazing organizations together to begin the conversation on how we can best collaborate and make a bigger impact and get a unified message out about our cause.  It was really great to see and feel some progress being made and so many organizations coming together.  I strongly believe that we are making progress and have a lot of very dedicated and determined people who are going to make it happen.  All of us together WILL make a difference, we WILL see a lot of progress in the upcoming years.  I am grateful and honored to be a part of it.

 

 

 

 

 

Me too Kathi!
Rob, Sandy, Jeremy, and Kathi pretty much covered everything with their thorough posts. 

This was my second visit to DC with CureSearch.  Wednesday's training helped me get my advocacy legs under me.  As somebody that is relatively new to the political advocacy arena, the layout of how to approach the visit helped me build my confidence.  (The training I received in January 2009 was very brief and was more focused on the history of CureSearch vs. how to advocate and make an ask).  

Kathi and I were joined by John Bennett, a new advocate from Washington State.  We were a strong trio.  Each of us brought a perspective and an expertise that helped strengthen our presentation.  (John's previous employment in the pharmaceutical industry was a great addition to our team). 

I came away from the visits with a sense of satisfaction.  I felt our message was heard.  Time will tell if our requests turn into action from our friends in Congress.

I want to encourage everybody to make the trip to DC with CureSearch or other childhood cancer advocacy groups.  There is strength in numbers.  I felt it!  (My visit in 2009 was solo and the visits were rough).  

I am eager to hear about the next steps from CureSearch and see how this community can help the Creating Hope Act get the support it needs.  This act has the power to change the landscape of how the pharmaceutical industry views "rare" diseases.  It would be great to have their support in fighting this battle.  However, to make this happen we are all going to have to stand up and make our voices heard.  When there is a call to action I ask each and every member of this community to make their voices heard.

Thanks,
Kelly Forebaugh

Thanks for going to D.C. Kelly!

As my friends above reported, the DC meetings went well. My friend Rob Whan from the first post above represented Florida with me for our Capitol Hill visits. Most of the offices we visited were in agreement that budget cuts should not include cuts to the NIH which indirectly funds the Children’s Oncology Group. Our requests were simple this year in a weak economy but still important. One of the most interesting requests was for support of the newly introduced "Creating Hope Act" -see more about this Act here>>

http://pablove.org/news/creating-hope-act-of-2011/

We requested support for the "Childhood Survivorship Research and Quality of Life Act", formerly HR2109, when it is re-introduced later this year. -see more about this Act here>>

http://www.govtrack.us/congress/bill.xpd?bill=h111-2109&tab=summary

For our state, Florida, we were able to get 10 face to face meetings and visited another 17 offices just to drop off the packet provided by CureSearch detailing the Congressional requests. We'll see if they follow through when it comes time to vote. It’s a long day on Capitol Hill but as many have stated before me, it is a very rewarding experience to be able to “fight back” in this battle against childhood cancer. One of the major concerns, which Sandy already pointed out, is the unacceptable and ever shrinking amount of contact that we, as the children’s cancer advocacy community, have with our Washington representatives. This year’s event is the only scheduled Washington visit for CureSearch advocates down from 2 in years past. Attendance for the event was also lower across the board with several states completely unrepresented. If you are considering getting involved in this type of hands-on advocacy now is the time. You are needed. Contact your reps. Remind them of our visits and of our needs. I will gladly provide info and email contact information for all of the offices we visited in Florida if any Floridians want to join in. I’ll bet the people above will provide the same for their states. Reach me at sez.greene@verizon.net if you are so inclined. I read this on someone’s FB page. Sorry I can’t remember which, but it fits here perfectly...

“Never doubt that a small group of thoughtful, committed citizens
can change the world;
indeed it's the only thing that ever has.”
Margaret Mead (1901-1978)
 
Steve G-Zak's dad

Thank you all for all you have done and for sharing your experiences with us here!!  It was AWFUL not being able to be there this year!!   I'm hearing great things about the group who represented PA, though, and I was thrilled Bob Casey (D-PA) introduced the Creating Hope Act in the Senate.

 

It sounds like some of the arguments ("take it up with the NIH/NCI, not us") from the more reluctant legislators are exactly the same as they've been since 2007.  They are failing to recognize the recent IOM report that showed how the NIH/NCI has consistently failed to support the pediatric cancer community the way it should.  We have very little, if any, influence over this body (NCI) as public citizens (I don't even know how they are appointed), but we do have some pull with the constituents of the legislative body (those who are elected by us), which is why we are pushing them to encourage the NIH/NCI to increase funding for childhood cancer research OR go over their authority if/when necessary.  (And according to their votes for the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008, they agreed with us unanimously, at least, on paper.  The Appropriations Committee never bothered to fund it and fulfill the promise of that law.  Grrr.)

 

I guess that brings me to something I've been wrestling with for a couple of years.  Someone please help me understand (or correct me if I'm wrong.)  CureSearch is funded by the COG, which is funded by the NCI, correct?  

 

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.)

 

I'm wondering if we'd be even more effective as an advocacy community if our voices (united, of course) came from a different source [PAC2 Advocates (from all different foundations) representin' at the September Pediatric Cancer Caucus? ]

 

??? 

 

Thanks again to everyone who attended, who is writing letters and contacting representatives and Senators, educating them and reminding them of what is happening to our kids (when their focus is divided between wars, elections, and so many other things.)

 

All best,

 

Amy 

 

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