WHY WE DO IT 

Childhood cancer is the leading cause of death from disease among children in the U.S.  Today, 1 in 5 kids diagnosed with cancer will not survive.  For many pediatric cancers, there has been little to no advancement for treatment since the 1970's.  With Purpose attacks three distinct pain points in the complex problem of advancing treatment for kids with cancer and, in turn, giving families hope for a better future.

   

 
 
A reminder from Sam's friend Eli about what really matters.

A reminder from Sam's friend Eli about what really matters.

Lack of funding for research

Currently, the National Cancer Institute designates roughly 4% of its research budget to all forms of childhood cancer.  With Purpose supports advocacy and awareness efforts that attempt to persuade the NCI to designate a higher percentage of research dollars to childhood cancers.  

 
The research bench dedicated to Sam, the inspiration for With Purpose, at the Children's Cancer Therapy Development Institute.

The research bench dedicated to Sam, the inspiration for With Purpose, at the Children's Cancer Therapy Development Institute.

Lack of "proof of concept" research

Too often, promising discovery research for childhood cancer is published but does not result in clinical trials or new treatments for kids actually fighting the disease.  With Purpose supports the Children's Cancer Therapy Development Institute, a nonprofit biotech that translates discovery research into real clinical trials and, one day soon, life-saving treatments.  

 
Former President Obama signs the 21st Century Cures Act which reauthorized the Creating Hope Act in 2016.

Former President Obama signs the 21st Century Cures Act which reauthorized the Creating Hope Act in 2016.

Lack of profitability for pharmaceutical companies

With Purpose supports Kids V Cancer, a ground-breaking organization that pioneered the Creating Hope Act, a priority voucher program that has resulted in almost $1 billion in incentives for companies that develop drugs for kids with cancer and other life-threatening diseases.  They are now working to pass the RACE for Children Actwhich would require companies developing cancer drugs to undertake studies of their drug in children when the molecular target of their drug is relevant to a children’s cancer.  

Resources:

1.  Ward E, DeSantis C, Robbins A, Kohler B, Jemal A. Childhood and adolescent cancer statistics, 2014. CA: A Cancer Journal for Clinicians 2014; 64(2):83-103.

2.  American Cancer Society, Childhood and Adolescent Cancer Statistics, 2014.

3.  Howlander N, Noone AM, Krapcho M, et al. (eds).  SEER Cancer Statistics Review, 1975-2011, National Cancer Institute.  Bethesda, MD, http://seer.cancer.gov/csr/1975_2011/, based on November 2013 SEER data submission, posted to the SEER website April 2014.

4.  Budget and appropriations. (2016, December 15). Retrieved January 25, 2017, from National Cancer Institute, https://www.cancer.gov/about-nci/budget

5.  Scudellari, M. (2015, July 20). Children’s cancer is unprofitable and ignored in the magazine. Newsweek. Retrieved from http://www.newsweek.com/2015/07/31/childrens-cancer-unprofitable-and-ignored-355135.html

6.  Adamson, P. C., Weiner, S. L., Simone, J. V., & Gel band, H. (2005). Making better drugs for children with cancer. Retrieved from https://www.nap.edu/read/11259/chapter/2#3

7.  Boklan, J. (2006). Little patients, losing patience: Pediatric cancer drug development. Editorial5(8), 1905–1908. doi:10.1158/1535-7163.MCT-06-0179

8. Unituxin becomes Third FDA-Approved drug ever for children with cancer. (2015, March 16). Retrieved January 25, 2017, from Children’s Hospital of Philadelphia, http://www.chop.edu/news/unituxin-becomes-third-fda-approved-drug-ever-children-cancer

9. Children diagnosed with cancer: Late effects of cancer treatment. (2017). Retrieved January 25, 2017, from American Cancer Society, https://www.cancer.org/treatment/children-and-cancer/when-your-child-has-cancer/late-effects-of-cancer-treatment.html