It is a challenge to prepare a 2011 year-end wrap up for the childhood cancer community, but compared to what the 40,000 children in treatment in the US face every day, the burden is light. This note helps us celebrate some of the key accomplishments within our community last year. Those mentioned in this note are only some of the thousands, if not hundreds of thousands, of groups and individuals fighting to create a world without childhood cancers. Because each one may not be mentioned here it does not minimize what they have and will continue to accomplish; as you can read in previous PAC2 updates here. But some community-wide stories warrant some special attention….
Fundraising and Corporate Sponsorship
One thing the childhood cancer fundraising world lacks is significant corporate sponsorship. We also know the National Cancer Institute does not fund childhood cancer research to acceptable levels and that research by pharmaceutical companies is limited by the “rareness” of childhood cancers and resulting lack of profit potential. In 2011, leaders in the community helped take a big step in the right direction with the addition and continued support of corporate sponsors, and record breaking private fundraising.
Our congratulations and thanks go out to: #1 – Alex’s Lemonade Stand Foundation who recruited Toys “R” Us to the fight and raised over $1.5 million with its in-store campaigns for ALSF; #2 - Dell Services which will contribute $4 million to the Neuroblastoma and Medulloblastoma Translational Research Consortium at the Van Andel Institute; and #3 - Hyundai which donated $7.1 million from its bottom line to 71 children's hospitals and research centers across the country in the Hope on Wheels Tour. In addition to these sponsors, the St. Baldrick’s Foundation set a fundraising record in 2011, raising $28 million (up $6 million or 27% from 2010) as it continues to be the #1 funder of childhood cancer research outside the US government.
In 2011 a new orphan drug (Erwinaze) received FDA approval for treatment of ALL. This means that in the past 20-plus years--two decades that arguably held more scientific advances than were made in the previous sum total of human history--only TWO drugs have been approved for treatment of childhood cancers. Over the same two decades the FDA has approved more than 50 drugs for adult cancers.
Fortunately, the Creating Hope Act (CHA) created by Nancy Goodman, founder of Kids v Cancer, provides a possible and important new means to stimulate drug discovery. If passed into law, the CHA would allow pharmaceutical companies to expedite FDA review of more profitable drugs in return for developing treatments for rare pediatric diseases like childhood cancer, creating incentive to innovate at no cost to the American taxpayer. Your support of this bill through multiple and persistent contacts with your members of Congress and their staffs resulted in 105 Representatives and 10 Senators signing on as sponsors of the bill by the end of the year. This means the CHA will be one of the few pieces of health care legislation under serious consideration for passage this year by Congress.
The Children’s Oncology Group Foundation
In September, Dr. Peter Adamson, Chair of the Children’s Oncology Group, which includes 7,500 experts across 200 worldwide institutions and treats 90% of cancer kids in the US announced the creation of The Children's Oncology Group Foundation. The COG Foundation will receive and direct funds from supporters to bring support to the most promising research and treatments for childhood cancer. Coupled with this announcement is a change in the relationship between COG and CureSearch. Although CureSearch will continue to support COG hospitals and other childhood cancer related causes, it will no longer serve as the funnel for NCI funding to COG.
The new COG Foundation will be able to receive its funding directly from NCI/NIH and any other supporter or resource. The COG Foundation will thus be able to expand its funding sources well beyond the federal government for its efforts, crucial, because federal funding is expected to decrease given the country’s fiscal situation. Dr. Adamson also states that COG wants to “engage the community in a way we’ve never done.” Exciting news with much more to come.
2nd Childhood Cancer Summit
Also in September, the 2nd Childhood Cancer Summit was held in Washington, DC by the Congressional Childhood Cancer Caucus and chaired by Rep. Michael McCaul (R-TX) and Rep. Chris Van Hollen (D-MD) to educate Congress to the challenges of childhood cancer. In 2010 about 50 to 75 people attended the event. In 2011 a huge auditorium seating 500 people was nearly filled! The speakers focused on drug development and included Dr. Peter Adamson, Chair of COG, Dr. Ron Portman, Pediatric Lead for Bristol Myer Squibbs and Chair of BIO’s Pediatric Drug Development Committee, Dr. Eugenie Kleinerman, Head of the Division of Pediatrics at M.D. Anderson Cancer Center, and Nancy Goodman, Executive Director of Kids v Cancer.
But the stars of the day were the kids, as survivors Ryan Darby and Brianna Commerford spoke to the crowd and stole our hearts. We should also note that the 46 Mommas Shave for the Brave shaved in DC before the Summit, and stood proudly with bald heads next to Rep. Michael McCaul as he introduced the Creating Hope Act. The day before the Summit, bipartisan legislation was introduced in the House and Senate by Senators Jack Reed (D-RI) and Kay Bailey Hutchison (R-TX) and Representatives Jackie Speier (D-CA) and Michael McCaul (R-TX) that would address the health care needs of the 350,000 survivors of childhood cancer. Children’s Cause for Cancer Advocacy (CCCA) worked closely with Congressional leaders to draft the Pediatric, Adolescent and Young Adult Cancer Survivorship Research and Quality of Life Act, which marks a critical step forward in the delivery of medical and psychosocial care to survivors of childhood cancer. Maureen Lilly, Executive Director of CCCA said "This bipartisan bill is an opportunity to launch a national effort to improve how these children and young people are cared for as they grow to be adults."
In addition, a Capitol Hill reception was co-hosted on the eve of the Summit by Children’s Cause for Cancer Advocacy, Children’s Brain Tumor Foundation, Mattie Miracle Cancer Foundation, Leukemia and Lymphoma Society, St. Baldrick’s Foundation and the EVAN Foundation, which provided a great opportunity for advocates to engage directly with our nation’s lawmakers. We are certain that the Summit and Childhood Cancer Awareness Month activities will continue to grow, serving as an excellent conduit for greater awareness and ultimately, tangible progress.
During 2011, PAC2 helped facilitate two workshops in Washington, DC bringing together multiple organizations and advocates to identify means to promote collaborative efforts in the fight against childhood cancer. In many ways the variety in mission, size, and geography of these organizations can make united efforts complex, but it also serves as a foundational strength of the community. The ultimate goal is to more efficiently benefit the cause, children with cancer, through synergistic, collaborative efforts. Perhaps the greatest accomplishment coming from the two workshops was that we took the first step in the process: working to build trust, relationships, and consensus and recognizing that these efforts are not only possible, but also desirable and worth striving for. No effort at collaboration is without complications, but it seems the majority of the group collectively agrees that the complications can be addressed if we listen to each other, plan well, and work together.
The next step coming out of the meeting entailed the development of a plan to formalize the structure of these collaborative efforts, ensuring a common mission, accountability and sustainability. This resulted in the initiation of the Design phase of "Project Collaborate". A core Working Team of 8 individuals and a 35-member Advisory Team of stakeholders representing all facets of the community have been working together through an open and transparent process to design and formalize a network that would serve the entire childhood cancer community. We hope that 2012 will bring inspiring news from this effort.
Moving Forward to a World Without Childhood Cancers
2011 was a year of great accomplishment and change in the childhood cancer community. These accomplishments reflect the continued growth and strength of the childhood cancer community through the efforts of many. Only an army of supporters can change the paradigm, and we are so thankful for the continued efforts of each and every advocate and organization, and you.
2011 was also a year where 13,500 American children were diagnosed with cancer, 27,000 moms and dads had their worlds turned upside down, and 2,700 children had their life cut too short; a year where 2/3 of five-year survivors face long-term health issues; and a year where 1 in 5 of our five-year survivors died from those issues.
But 2011 was also a year of hope. Hope for increased funding, hope for the discovery of new drugs, hope for increased advocacy and awareness, and hope that we will work together to create a world without childhood cancers. We are as impatient as you, but the momentum is building: as CHA architect Nancy Goodman smiled and said after three days of activities in Washington, DC: "The mouse is starting to roar…"
So, as we head into the New Year we resolve to fight, to share news and information with you, and to work collaboratively with all advocates and groups fighting childhood cancer. In 2012 please join us and add your voice...
"One voice united against childhood cancer"