Political Agenda

Political Agenda

The main goals surrounding the political arena for childhood cancer is awareness and federal funds. Since pharmaceutical companies are not in the business of finding a cure for pediatric cancer, only TWO pediatric cancer drug has been approved in the past 30 years, we must rely on private and grass-roots funding to find the cure.  

One organization that is in the forefront fighting for funds for pediatric cancer is CureSearch, a Bethesda-based organization dedicated to raising funds for childhood cancer research for the Children's Oncology Group, the wold's largest cooperative cancer research organization committed to conquering childhood cancer though scientific discovery and compassionate care. 

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A Win in Washington for Childhood Cancer Research

Our advocacy leaders have been busy working with Congress to make pediatric cancer funding a national priority. While negotiations will continue, the preliminary funding agreements are in from the House and Senate, and we’ve got the details for you right here. (Spoiler alert: There’s good news for pediatric cancer research!) 

A few months ago, the St. Baldrick’s Foundation — as part of the Alliance for Childhood Cancer — sent a letter to Congress, urging lawmakers to provide more funding for medical research and within those funds, to make pediatric cancer a higher priority.

 

All told, 91 childhood cancer organizations came together to sign our letter to Congress, and I’m excited to say that our hard work is starting to pay off!

While most programs received no increase, or even budget cuts, funding for medical research was given a much-needed raise.

More money was directed to both the National Institutes of Health (NIH) and the National Cancer Institute (NCI), which directly impacts funding for childhood cancer research. That’s a big deal, especially for a bill that cut a total of $3.7 billion in funding from last year.

For those of you who like to get more in-depth, here are some highlights from the House and Senate Labor, Health & Human Services and Education Appropriations Reports:

Overall Funding – Medical research funding was a big winner in the appropriations bills. The House Appropriations Committee recommended a $1.1 billion increase for the NIH, for a total of $31.2 billion. The Senate Appropriations Committee was even more generous, recommending a $2 billion increase for the NIH, for a total of $32 billion. The final agreement won’t be reached until this fall, but the preliminary numbers are looking very positive.

Gabriella Miller Kids First Research Act – As you may recall, last year, Congress approved the Gabriella Miller Kids First Research Act, which creates a special fund of $12.6 million each year for the NIH to conduct pediatric research. We were successful in having both the House and Senate call on the NIH to prioritize research relating to childhood cancer in making funding decisions under the Kids First Act.

Office of Cancer Survivorship – We all know the importance of quality of life and survivorship support for the youngest of cancer survivors. We asked Congress to pay special attention to this area. Happily, both the House and Senate accepted our recommendations and called for more research in this area. The House of Representatives specifically asked the Office of Cancer Survivorship at the NCI to issue a report to Congress next year on how it could better focus resources on childhood cancer.

Childhood Cancer Research – The NCI is doing remarkable work in pediatric cancer research. We all want them to do even more. At our request, Congress highlighted several of these important research areas and told the NCI it expects this research to be a priority, including clinical studies for children with brain tumors, and development of the novel pediatric “MATCH” study, as well as the important pediatric preclinical testing program evaluating new agents for treating pediatric malignancies.

This is exciting news, and it goes to show that when we work together, we can make a big impact for kids with cancer!

We want you! Join Speak Up for Kids’ Cancer to get updates on important childhood cancer advocacy news.

 

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In the war against childhood cancer it is imperative that the United States government gets involved and understands that our children are getting the shaft when it comes to federal funds available.

The Pediatric Cancer Caucus, the  largest collection of childhood cancer experts ever assembled before Congress, met in September. They came together because of the world’s awareness, the demand for more funds for research, and the voices of hurting, tired, and unrelenting families.

PAC2's Report on the Pediatric Cancer Caucus (prepared by PAC2 founder, AJ’s dad, Bob).

 

 

 

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"This is a win for the community" -

Cynthia Duncan - Director of Advocacy, CureSearch for Childhood Cancer

On Monday, July 26, 2010, the House Subcommittee on Defense Appropriations recommended a Budget for FY 2011. The budget included $5 million earmarked for CureSearch for Childhood Cancer. The Budget Summary can be viewed here and the Earmarks can be viewed here. The bill must still pass the full House Appropriations Committee, the full House and Senate, and be signed by the President. The earmark was requested by Representatives Van Hollen (MD), Conyers (MI), Ryan (OH), Sestak (PA) and Sires (NJ).  Major kudos gentlemen; could you add a zero?

The announcement from CureSearch can be viewed here: Advocacy Update from CureSearch for Children's Cancer.  To quote: "CureSearch for Children’s Cancer is pleased to report that the House Defense Appropriations Subcommittee included $5 million for children’s cancer research, a significant increase over last year’s funding.  This funding will support children’s cancer genomics research."

“While we are excited about this development,” said John L. Lehr, President and CEO, CureSearch for Children’s Cancer,  “we must continue to apply the appropriate  level of advocacy on the Senate side and then again during the House-Senate conference.”

Rep. Tim Ryan's (OH) press release on Monday, "Congressman Ryan Announces Defense Appropriations Funding $37.5 Million Approved by Subcommittee for Local Projects" stated:

"CureSearch – Pediatric Cancer Research and Clinical Trials: $3 million (hopefully an error in the press release, the earmark table lists $5 million)

 

CureSearch funds and supports the research of the Children’s Oncology Group, the world’s largest cooperative pediatric cancer research organization. This project will support and expand [we LIKE expand!] upon existing Department of Defense translational research; specifically, genome-wide screening for therapeutic targets in high-risk childhood cancer. This involves identifying, delineating, and validating molecular targets into new approaches to therapy targeting new agents against highly resistant, poor prognosis diseases. Funding will benefit Akron Children’s Hospital and five other children’s hospitals in Ohio."

 

Ohio.com carried a story yesterday, Defense funding bill would bring $5 million to Akron institute's project that included the following:

 

"In addition, the bill includes $5 million to support research efforts of the Children's Oncology Group, a national pediatric cancer research cooperative that includes Akron Children's Hospital. The money would be used to expand existing U.S. Department of Defense research to help discover new therapies for childhood cancers that resist existing treatment options. The federal infusion of research dollars is important, particularly given the recent drop in available funds nationwide because of the struggling economy, said Dr. Jeffrey Hord, director of Akron Children's Hospital's Showers Family Center for Childhood Cancer and Blood Disorders. ''It's very important to get additional funds to continue research into childhood cancer,'' he said."


MedCity News published an article yesterday, Ohio’s Austen BioInnovation Institute may get $5 million in federal aid that included the exact same statement.

According to Cynthia Duncan of CureSearch, this funding is separate from the funding (or lack thereof) for the Carolyn Pryce Walker Conquer Childhood Cancer Act ("the Act"). Funding for the Act was discussed by CureSearch CEO and President John Lehr in his May 2010 interview with PAC2. Mr. Lehr indicated that last year the Act received $3 million from Labor, Health and Human Services and $1 million from Office of the Secretary of the Department of Health and Human Services.

So, as Cynthia said this morning, the
$5 million from Defense is a WIN for the childhood cancer community!! Yay!!!!...(they seem so 'rare')

Thanks for all you do,
PAC2

 

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Congressman Sestak Leads Charge for Increased Funding for Pediatric Cancer

 


Today, Pediatric Cancer Caucus Chair Congressman Joe Sestak (PA-07), joined by 48 members of Congress, sent a letter urging the Appropriations Committee to include $30 million for pediatric cancer research in the FY 2011 Labor-Health and Human Services-Education Appropriations bill.

Legislation that the Congressman co-sponsored and that was signed into law in 2008 authorizes the funding, which is used to expand pediatric cancer research and inform doctors and families about treatment options. Congressman Sestak also announced the introduction of a resolution recognizing September 13th as National Childhood Cancer Awareness Day, in conjunction with original co-sponsor and Pediatric Caucus Co-Chair Representative Michael McCaul.

"From my daughter's continued battle with cancer, I know all too well its impact on children and families," said Congressman Sestak. "We have been incredibly lucky, but too many children are lost every year to cancer and those who survive face dire after- effects of their treatment."

The Caroline Price Walker Conquer Childhood Cancer Act, which became law in 2008, provides for the additional funding for research on pediatric cancer and treatment, a grant program that better disseminates information on best practices and connects children with best treatments for their cancers, and investments in epidemiological tracking of pediatric cancer. It is named in honor and memory of former Representative Deborah Pryce's daughter Caroline, who passed away in 1999 at age nine from Neuroblastoma. In 2009, the Pediatric Cancer Caucus secured $4 million for pediatric cancer and research as well as a commitment from the National Institutes of Health to ensure other cancer funding is available for pediatric cancer research.

"I am glad to see such broad bipartisan support for this research, which will allow more children with cancer to enjoy full and healthy lives, so that more families can be as fortunate as mine. I look forward to working with the Pediatric Cancer Caucus to continue bringing attention to the needs of children with cancer."

With nearly 15,000 new cases diagnosed each year, cancer is the leading cause of death by disease in children, cutting short the lives of more children under the age of 20 than any other disease. While long-term survival rates for pediatric cancer are fairly high - 1 child out of 5 who is diagnosed with cancer dies from it - 3 out of 5 children suffer from long-term side effects.

The other Members signing the letter were Representatives Michael Arcuri, Tammy Baldwin, Melissa Bean, Shelley Berkley, Howard Berman, Marsha Blackburn, Russ Carnahan, André Carson, Emmanuel Cleaver, Steve Cohen, Joe Courtney, Danny Davis, Diana Degette, Bill Delahunt, Lloyd Doggett, Sam Graves, Raúl Grijalva, Luis Gutierrez, Maurice D. Hinchey, Walter B. Jones, Dale Kildee, Mary Jo Kilroy, Peter King, Leonard Lance, Robert E. Latta, Christopher John Lee, Blaine Luetkemeyer, Stephen Lynch, Carolyn Maloney, Betsy Markey, Eric Massa, Michael McCaul, James McGovern, Charlie Melancon, Dennis Moore, James Moran, James Oberstar, William Owens, Janice Schakowsky, Allyson Schwartz, Bobby Scott, Jackie Speier, Betty Sutton, Chris Van Hollen, Debbie Wasserman Schultz, Charles Wilson, and David Wu.

 

See the text of the letter below:


Dear Chairman Obey and Ranking Member Tiahrt:

We write today to respectfully request that you provide full funding for the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008 (Public Law 110-285, 122 Stat. 2628-2631) in the FY2011 Labor-HHS-Education Appropriations bill. We believe that this funding is essential to provide effective, widespread and speedy research to help eradicate the cancers that plague our nation's youth.

As you may know, The Caroline Pryce Walker Conquer Childhood Cancer Act is named in honor and memory of former Representative Deborah Pryce's daughter Caroline, who passed away in 1999 at age nine from Neuroblastoma. This authorization bill enjoyed bipartisan support, passing the House unanimously 416-0, and passing the Senate by unanimous consent. The House Appropriations Committee included $10 million for this authorization in the House-Passed FY10 Labor-HHS Appropriations Act, however, only 4 million was included in the Consolidated Appropriations Act.

The Caroline Pryce Walker Conquer Childhood Cancer Act calls upon the Secretary of Health and Human Services and the Director of NIH and other Federal agencies with an interest in prevention and treatment of pediatric cancer to continue to enhance, expand, and intensify pediatric cancer research and other activities related to pediatric cancer, including therapeutically applicable research to generate effective treatments, pediatric preclinical testing and pediatric clinical trials through National Cancer Institute-supported pediatric cancer clinical trial groups and their member institutions. This research, and the treatments it will help to develop, will allow children with cancer the opportunity to enjoy full and healthy lives.

The Act also authorizes grants to childhood cancer professional and direct service organizations for the expansion of activities that provide information on treatment protocols to ensure early access to the best available therapies and clinical trials for pediatric cancers. Ensuring that children get the best type of treatment as soon as possible is especially important for pediatric cancer both because children and adolescents are much more vulnerable to the side effects of these treatments and because they have the ability to recover fully if they get the right treatment. Additionally, these grants would also be used to provide information on the late effects of pediatric cancer treatment to ensure access to necessary long-term medical and psychological care, specialized education resources for school reentry and postsecondary education and other support services.

Additionally, this legislation authorizes the Director of the Centers for Disease Control and Prevention to award a grant to enhance and expand existing infrastructure to track the epidemiology of pediatric cancer into a comprehensive nationwide registry of pediatric cancer cases.

As you are aware, each year cancer kills more children between 1 and 20 years of age than asthma, diabetes, cystic fibrosis, and AIDS, combined. Because of research in pediatric cancer, up to 75 percent of the children with cancer can now be cured. However, despite significant improvements in our ability to fight pediatric cancer, some types continue to lack effective treatment and thousands of children still lose their bouts with cancer. Indeed, cancer remains the leading cause of death by disease in children. It is with these children in mind that we seek your support in securing this much needed funding for FY2011.

Thank you again for your consideration of this request. We look forward to working with you the Appropriations Committee and appreciate your support for eradicating this devastating disease.

 

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The following is an excerpt from a follow-up email received from Kate Shafer of CureSearch after Team Leaders met with Senators, Representatives, and congressional aides to ask for their help in funding childhood cancer research.

Dear Team Leaders,

I am very pleased to provide a follow up from our wonderful Team Leader meeting of January 25-26. The meeting was very well attended with 43 Team Leaders coming from 31 states. In all we made more than 185 scheduled visits and several productive unscheduled visits. The timing of this meeting was perfect both in terms of an early introduction of our legislative initiatives to members of Congress and in terms of keeping one step ahead of mother nature who brought DC to a standstill with 30” of snow. We do not cope well with snow here in DC.

In my earlier email I informed you about the surge in membership of the pediatric cancer caucus as a direct result of your meetings. You can now learn more about the caucus and track the membership at http://sestak.house.gov/index.php?option=com_content&view=artic... .

The feedback thus far has been very positive. While there is concern about the freeze on federal discretionary funding, many offices have indicated their willingness to submit appropriation requests to support full funding of the Caroline Pryce Walker Act and several expressed surprise and concern that there was not an additional amount provided in the last appropriation cycle. Several offices also expressed their willingness to submit appropriation requests to Defense and to consider support for continuation of ARRA funding in order to continue the innovative pediatric cancer research that was started under this initiative.

Currently, we are submitting the information needed by Congressional offices from Curesearch so they can submit the appropriation requests.

Thank you again to those of you who came to DC and to those who were here in spirit. I will be sure to keep you informed throughout the appropriations process and will call on you for your continued help.

Kate Shafer, LICSW
Director of Advocacy
CureSearch National Childhood Cancer Foundation

 

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The House has just passed omnibus appropriations conference report (HR 3288) by a vote of 221-202-1, with 10 members not voting. The Senate is likely to begin debate on the bill either later today or tomorrow. The conference report is the final House- Senate agreed upon language.


The conference report includes:

* $3 million that will go to the Centers for Disease Control for a pediatric cancer registry

* $1 million to carry out informational services to patients and families affected by childhood cancer authorized under the Caroline Pryce Walker Conquer Childhood Cancer Act.

At present, it does not appear there is an appropriation for pediatric cancer research as authorized by the Caroline Pryce Walker Conquer Childhood Cancer Act.

The National Cancer Institute reports that it is meeting the funding level identified for pediatric cancer research in the Caroline PryceWalker Conquer Childhood Cancer Act of 2008 within its base budget. The conferees commend NCI for its attention to this issue.

CureSearch