Max Cure Foundation Asks Washington to #StepUp

The pediatric cancer community through the Alliance for Childhood Cancer on Tuesday, June 24, 2014, went to Capitol Hill to meet with Senators and Congressmen from all 50 States. The Max Cure Foundation joined forces with over 60 other CAC2 organizations (The Coalition Against Childhood Cancer – A Collaborative Group) and other advocates from the childhood cancer community to both virtually and physically storm Washington, D.C.

The message: Pediatric Cancer Research, which relies almost entirely on government funding, is grossly underfunded. The Federal Government needs to #StepUp funding to support research for pediatric cancers, including funding for COG (Children Oncology Group) hospitals nationwide, which would include funding at these hospitals for clinical trials for children with cancer. In addition, the second “ask” from congress is for those in the Senate and the House of Representatives to co-sponsor the Bills pending in both houses known as the Carolyn Price Walker Re-authorization Act.

#StepUpMax Cure’s Vice-Chairman, Richard Plotkin, took to the streets in Washington D.C. speaking to anyone who would listen. “It demonstrated to me that CAC2 is becoming a real force in the pediatric cancer community,” stated Richard.

On Tuesday, June 24th, Richard was part of the New Jersey delegation visiting New Jersey’s two Senators and four of its members of the House of Representatives. Richard was inspired as his street team included two cancer survivors, ages 19 and 34, and the families and friends of children lost to cancer.

“The power of having Maggie, who was diagnosed at age 15 and is now 19, and Christine, A 34-year-old survivor of childhood cancer, is overwhelming in my view. This gave us the opportunity to address the issue of survivors, not in theoretical terms but rather, with actual survivors to tell their stories, especially with Christine who suffers, and will continue to suffer throughout her life, chronic/severe side effects. Maggie as a teenager, still within the five year period from diagnosis and hence, not technically considered a survivor, was able to present not only what she went through but also, the impact on her life currently and what she has to look forward to, ie, 98% of survivors have long term side effects.” Richard stated.

The collaborative goal was to request from Congress that the Federal budget allocated to the National Cancer Institute (NCI) $4.9 billion which, given inflation decreased by 25% over the LAST 10 years, should be increased in the 2015 budget to $5.26 billion. The intention is that with the increased budget, the NCI would increase funding to help find cures and less toxic treatments for those afflicted with childhood cancers.

The request is simple. The numbers make sense.

Kids Treated at Cog HospitalsDid you know that 90% of children who are diagnosed with one of the over 100 different forms of pediatric cancer are treated at COG hospitals? Or that over the past 10 years the Federal funding cuts to COG hospital’s and to research has reached 30%? The number of children being diagnosed with cancer is rising every year, yet we are cutting our budget to find treatments? In addition to helping the cause by funding COG hospitals in certain of their efforts to conquer childhood cancers, the monies from the Federal Government are also used to fund research for cures and less toxic treatments.

What is a COG Hospital?

When we started the #StepUp campaign, Vickie Buenger, CAC2 President, recognized the community may not know what a COG hospital is and therefor we posted the question on Facebook. We noticed the overall response was that most did not know what a COG hospital was.

COG hospital
 

With over 30 responses, this demonstration proved we have a long way to go and must continue to share the message. It is our responsibility to educate and inform the public. It is our responsibility to #StepUp. Vickie was able to offer some clarification to our audience.

Cog hospital question Vicki response

What’s the Truth?

The truth is there is a 0% survival rate for many childhood cancers. That in 2014 there is an estimated 15,780 new cases of cancer in children. That is 43 children diagnosed daily. We need hospitals, doctors and adequate research funding so these children have a fighting chance. The childhood cancer community has joined forces. Together we are uniting on Capitol Hill and through social media to make sure our Roar is heard. Every step we take and every campaign we plan, takes us one step closer towards success.

Together we will Roar For A Cure, until one is found.

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