PAC2 Initiative - Support Childhood Cancer Funding in FY 2012

LEGISLATIVE ACTION ALERT
SUPPORT FUNDING FOR PEDIATRIC CANCER

CONTACT YOUR SENATORS TODAY!


Senators Jack Reed (D-RI) and Johnny Isakson (R-GA) are spearheading a bi-partisan effort to get as many senators as possible to sign-onto a letter to the Senate Appropriations Committee requesting increased funding for pediatric cancer initiatives in Fiscal Year 2012.    Please see the attached two-page correspondence that Senators Reed and Isakson recently sent to all senators.

 

Senator Reed’s office has asked that the community engage our grassroots in supporting this effort.   Specifically, getting advocates to ask their 2 senators to sign-onto the letter.

 HOW YOU CAN HELP........

  1. Please call your two senators in Washington and ask the receptionist for the email address for the senator's health care legislative assistant.  Identify yourself as a constituent  when you call.
  2. If you do not know your senators phone numbers, they can be found here: http://www.senate.gov/general/contact_information/senators_cfm.cfm
  3. Once you have the legislative aides’ email addresses, please send separate emails to them that contain the attached correspondence (download here) from Senators Reed and Isakson.
  4. Include a brief note in the text of your emails, that;
    • makes clear you are constituent,
    • conveys why you are involved in the pediatric cancer community,
    • specifically asks the  senator to sign-onto the letter in support of funding for pediatric cancer programs.
    • you reference the attachment from Sen. Reed and Isakson which has all the details the aide will need
    • you close by asking to be kept apprised of the senator's decision.   Include your home address in your message.
  5. Please note -- This is a letter for senators to sign.  Please do not contact Senator Reed or Isakson’s office and ask that your signature be added to the letter. 
  6. The deadline for senators to contact Senators Reed and Isakson to sign-onto the letter is June 8th.  Offices will need some lead time to consider this request so please act today!
Thanks!

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My email to Tessie Abraham, Legislative Aide for Senator Pat Toomey (R-PA.)
Dear Ms. Abraham,
I am a constituent of Senator Toomey's, residing in Bucks County, PA.  My husband and I buried our first born daughter on August 30, 2008, when she was 3 years old, because of stage IV, high riskNeuroblastoma.  We have been frustrated and angered by the government's continually shrinking financial commitment to research specifically geared towards the number one disease killer of our nation's children (taking more young lives than pediatric AIDS, diabetescystic fibrosiscongenital anomalies and asthma COMBINED.)
 
The childhood Cancer community is horrified to learn that the NCI's Director, Dr. Harold Varmus feels it is doing an "adequate" job in funding all pediatric Cancers, while incidence rates continue to rise, and children continue to die (and be denied entrance in clinical trials for lack of space/funding) every day.  
We need to know what our legislators will do to help us change the paradigm of how the leaders of the NCI see our most vulnerable victims of these diseases, and to see their plight in terms of Potential Years of Life Lost (PYLL), as  Dr. Eugenie Kleinerman - Head, Division of Pediatrics, M. D. Anderson Cancer Center means when she says: "Curing childhood cancer is the equivalent of curing breast cancer in terms of productive life years saved." 
We need to know how our legislators will guide the NCI to heed the recent IOM report that stated, 
Another major problem is the inadequacy of NCI funding for Cooperative Group clinical trials [note:  pediatric cancer trials are carried out largely by Cooperative Groups, credited with increasing cure rates for pediatric groups from 10% in the 1950s to 80% today].  As much as half of the cost of clinical trials today are borne by the clinical investigators and clinical care providers who design and carry out these important studies.  Almost universally, investigators are compelled to seek supplemental support from outside sources, such as pharmaceutical companies."

We realize that pharma does not consider children with Cancer marketable.  That is why we hope you will support the Creating Hope Act of 2011.  But we want you to go farther.  Join the Pediatric Cancer Caucus.  Tell Dr. Harold Varma of the NCI that he and his colleagues are not "making a pretty good effort" with regard to children with Cancer as he stated in his testimony on May 11.  They need to do much, much more and direct funding in a more equitable manner towards protecting the children diagnosed with these diseases, who should have access to longer, healthier lives than they do now.
See http://curechildhoodcancer.ning.com/forum/topics/nci-funding-more-lies-damn  for a graph that illustrates how low we regard the kids in the current funding model followed by the NCI.

***Most importantly, support Senator Jack Reed (D-RI) and Senator Johnny Isakson's (R-GA) bi-partisan effort to get as many senators as possible to sign a letter to the Senate Appropriations Committeerequesting increased funding for pediatric cancer initiatives in Fiscal Year 2012.   Please see the letter (which Senator Toomey should have received) by following this link:  http://www.keepandshare.com/doc/2827361/fy12-conquer-childhood-cancer-dcl-and-approps-letter-pdf-may-24-2011-12-58-pm-125k?da=y   
I look forward to reading the Senator's response, which I hope will specifically address his plans with regards to these action items to help save these brave children's lives.  They did nothing to deserve their fates.  They deserve to have greater hope for more effective, less toxic treatments that will allow them to live longer, healthier lives.  
Respectfully,
Amy Bucher
(address and home phone number provided)

Amy, This was a great letter. Wish I had read it before I sent mine in. I wonder how many of us wrote them from PA? ^^Eli^^'s dad borrowed from mine and got it done too. But how do we engage our families? Thank you for being such a great voice for all of us, the kids and especially for ^^Arden.^^  Wouldn't it be great to hold a town hall here in PA to meet with them? Maybe that would get there attention?

Keep up the great work!

Love,

Sherry

 

Dear Jason (health care - Senator Hagan)

Dear Jacqueline (health care - Senator Burr)

thank you for taking the time to speak with me briefly on Senator's Reed and Isakson's initiative to garner bi-partisian support for to get as many senators as possible to sign-onto a letter to the Senate Appropriations Committee requesting increased funding for pediatric cancer initiatives in Fiscal Year 2012.   I care because we lost our 14-year old son, Alex John, to childhood cancer on January 5, 2008.   Since then I've co-founded a grassroots advocacy community, People Against Childhood Cancer, or PAC2, in an effort to raise awareness of the lack of funding for childhood cancer research.   It has since grown to become a 'town hall' for the childhood cancer community.  PAC2 was honored to be invited and attend the briefing to Congress presented by the Pediatric Cancer Caucus, and I would encourage Senator Hagan to join the Caucus (more information on the Caucus can be found here).  PAC2 supports the efforts of fundraising groups (we don't raise funds), advocacy groups (we are not professional advocates) and family and patient support groups (sharing information and promoting their efforts). 

This unified effort is needed because childhood cancer is the number one killer disease of children today, killing more children than from asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined.   A child has about a 1 in 300 chance of being diagnosed before age 20.  Even though cure rates have improved since the 50's, we have plateaued on many childhood cancer types, and others remain terribly difficult to treat.  Survivors are then faced with a 2/3 change of major, long-term effects from the cure, including secondary cancers, major organ damage, cognitive development issues and others.   In short, kid's need us ALL to band together to fight for them.  

AJ was diagnosed on Father's Day 2007.  (You can read more about AJ here)  I knew nothing of childhood cancer.  That has changed.  Here is a look at current NCI funding, considering the number of years of potential life lost for leading adult cancers and childhood cancers.  It shows how grossly underfunded research into America's number one resource, our children, is.   Here is a report on what NCI claims to be accomplishing in the pediatric cancer world, with some counter-points that I and many others feel reflect reality.  I watched a webcast of Dr. Varmus' recent testimony about NCI and childhood cancer, transcribed it actually.   He said that NCI was doing "pretty good" in the pediatric cancer world.  I respectfully, wholeheartedly and with every breath I take; disagree. 

The NCI is not doing enough to support childhood cancer research. 

Senator Hagan can help by supporting the efforts of Senator Reed and Isakson.   Attached please find the sign-onto letter expressing support for pediatric cancer programs.  The letter should have all the details required.   All responses should be completed before June 8.  Please reply with confirmation that Senator Hagan will support this effort. 

Sincerely,

AJ's Dad
PAC2

(name and address)

Thanks for the links Theresa.   The two assistants listed for NC senators are not the ones that I was connected with when I called.    I will be following up to see what happens.

 

Sent email to Meghan Tiara (Legislative Aide to Chuck Schumer <D-NY>)  and on-line fax to Deidra Bennett, (Legislative Assistant to  Sen. Kristen Gillibrand <D-NY>). The email box for the latter was full. 

This being a holiday weekend, and time being short, I grabbed the contacts from this This Senate Health Legislative Assistant List  It looks pretty current, but it may not exactly match the information that one may get from the legislator's receptionist.  I'll just hope for the best! But, bottom line, we're tawking abt the NY Senators: really reliable allies and fighters for childhood cancer needs. I love New York!!


 

Update see "FY 2012 Appropriations for Childhood Cancer"  Posted by AJs Dad on June 10, 2011 at 5:58pm in PAC2 Commentary and News http://curechildhoodcancer.ning.com/forum/topics/fy-2012-appropriat...

The Senate sign-on letter in support of funding for pediatric cancer programs in FY12 is below.  The letter was sent over today to the Senate HHS Appropriations Subcommittee.  Only 12 Senators signed on.

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