A Message From Jim and Kate Arens

Our son, Peyton Arens, was diagnosed with Rhabdomyosarcoma cancer on January 25th, 2013. Peyton courageously fought this cancer for 15 months. Unfortunately he passed on April 29th, 2014. As you would expect, our family has spent significant time researching not only this type of rare cancer but childhood cancer in general. Through this research, we were very surprised and disappointed to learn how little money is allocated to childhood cancer research. As a result, we have set up this website to share this information with others.

There are numerous articles and websites available that do an excellent job addressing this issue. However, rather than list all of the articles and websites, we have worked with our good friend, Sandy Leeds, to summarize the key points from many of these articles. You can find our thoughts below.

As mentioned above, the primary purpose of this website is to educate visitors on the lack of funding for children's research. Several of our friends and family have told us they would like to make a donation to a charitable organization in Peyton's honor. There are several organizations that do a great job supporting cancer research. At this point, our family has decided to support St. Baldrick's Foundation.

St. Baldrick's Foundation only supports children's cancer research. In fact, St. Baldrick's raises more money than any other private organization that is focused on raising money for childhood cancer research. In 2012, St. Baldrick's raised $33 million. They do an excellent job controlling their overhead related costs. Approximately 82 cents of every dollar raised at St. Baldrick's is directed toward children's cancer research. If you would like more information on St. Baldrick's, please go to the website listed below.

www.stbaldricks.org

If you would like to make a donation to St. Baldrick's in honor of Peyton, please click on the link listed below. You will see a "donate" button at the top of the page that you can click on to make an online donation. St. Baldrick's is a 501(c)3 organization. As a result, your donations are tax deductible.

http://www.stbaldricks.org/hero-funds/prayingforpeyton

None of the money raised for St. Baldrick's in Peyton's honor will be used to subsidize any of Peyton's medical care. The funds raised in Peyton's honor will be used to fund children's cancer research; specifically research focused on finding a cure for Rhadomyosarcomo cancer. Hopefully this research will not only help Peyton but will also help future families that have to fight this horrible disease.

On a personal note, we are very proud of our son Peyton. He maintained a positive attitude throughout his 15 month fight with cancer. He was a fighter and we are so proud of how brave he was. Not once did Peyton complain nor ask "why me". He inspired many and for that we will forever be grateful. Peyton, we love and miss you!

Cancer Research - Where Should The Money Go?*

With limited resources, we're often forced to make difficult decisions. Imagine being in this horrible situation.you run into a burning building and you can only save one person. There's a six-year-old child and his 61-year-old grandparent. Who would you save?

It's a horrible question, but for most of us, the answer would be obvious - we'd save the child. Yet, when you look at how our nation invests in the fight against cancer, it seems like we've taken the opposite approach - we've decided to save the grandparent. We've hoped that the child will fend for himself and follow the grandparent to safety. Here are some numbers and ideas to think about.

Childhood Cancer is a Significant Problem

  • Approximately 13,000 children are diagnosed with cancer each year
  • Cancer is the number one disease killer of children in the U.S. (it ranks second in childhood death behind car accidents)
  • One in every 330 children develops cancer before the age of 20
  • The average age of children diagnosed with cancer is six
  • One in five of these children will die from cancer within five years
  • The incidence of cancer in children has actually increased over the past 30 years
  • More than 40,000 children undergo treatment for cancer each year
  • 73% who survive children's cancer suffer late-effects, such as infertility, heart failure and secondary cancers

The Federal Government Devotes Resources to Adult Cancer

  • Federal funding for childhood cancer is primarily allocated through the National Cancer Institute (NCI). The NCI is part of the NIH (National Institute of Health).
  • NCI funding was approximately $5.1 billion in 2011. Only $196 million of that funding went to childhood cancer. This is less than 4%!
  • Funding for pediatric cancer clinical trials is somewhere around $30 million.

The NCI Funding Doesn't Make Sense

  • A child who succumbs to cancer loses many more years of life than an adult who succumbs to cancer.
  • The average age of diagnosis for childhood cancer is 6 years old. The average age of an adult who is diagnosed with cancer is 61. Researchers talk about "person years life lost" (PYLL) which is obviously much greater for childhood cancer.
  • Childhood cancer has a five-year survival rate of approximately 80%. This survival rate is lower than many of the better-known and better-funded adult cancers. The good news is that this is significantly higher than the 20% survival rate in the 1960s.
  • The increase in childhood cancer survival rates can be partly attributed to the progress made against the most common childhood cancer, acute lymphoblastic leukemia. The survival rate for Leukemia was 50 percent fifty years ago and is 94% today. Unfortunately some forms of childhood cancer still have a five-year survival rate of less than 25%.
  • Even children who survive cancer have problems (partly due to the fact that adult drugs are often used to treat children with cancer):
    • 73% of survivors have at least one chronic health effect
    • 42% had a very severe or fatal effect
    • 10% develop a secondary cancer
  • Childhood cancer research relies on government funding to a much greater extent than adult cancer research. With adult cancer, 60% of funding comes from private sources; with childhood cancer, the amount of private research is negligible.

Look at the amount that the NCI devoted to each of the following cancers per year of life lost (PYLL):

  • Prostate cancer -- $10,000
  • Colon-rectal cancers -- $5,000
  • Breast cancer -- $2,172
  • Childhood cancers -- $940

Lack of Funding Has Several Repercussions

  • Poor early detection
  • Few safe / effective treatment options
  • Lack of therapies designed specifically for children
  • Long-term problems that result from using adult treatments for children
  • Few clinical trials
  • Long periods of time between testing adult therapies on children

Why Is Childhood Cancer Research Underfunded?

  • Self-advocacy is not possible
  • There are significantly more cases of adult cancer than childhood cancer
  • Children's cancer is more random (not related to environment or behavior), so the problem is more difficult to identify
  • Pediatric cancer is not lucrative for pharmaceutical companies. The cost of successfully bringing a drug to market has been estimated to cost $800 million (due to all of the failures and the lengthy approval process).

We can quantify the result of underfunding. From 1948 through 2003, the FDA approved 120 new cancer therapies for adults. In the last 20 years the FDA has initially approved only one drug for any childhood cancer. America's children deserve better.

In sum, there is lack of funding, costs that are high and markets that are not lucrative. This is the type of situation in which a market fails and governments often intervene. But, our government has limited resources and has decided to intervene to save adults rather than children. We need to dedicate our contributions to private entities that support research on childhood cancer and we need to pressure our politicians to change the NCI's allocation so that more funding goes to researching childhood cancer.

Some Organizations Are Not Helping As Much As You May Think

  • In FY 2011, The American Cancer Society (ACS) had more than $953 million of revenue and they spent almost $947 million
  • In that year, they spent approximately $8.7 million on childhood cancer research
  • The $8.7 million that they spent on is less than 1% of their revenue and it's approximately 8% of the amount that they spent on research during 2011
  • In sum, the American Cancer Society does many great things with respect to raising awareness, providing information and promoting research, but less than one cent of every dollar given to the ACS is spent directly on childhood cancer research

Other Organizations Send Most of Their Money to Pediatric Cancer Research

27,000 moms and dads will hear the words "your child has cancer" this year. These words place the child and family in the most difficult situation they have likely ever faced. These groups help support these families during this difficult time and focus their efforts on children's cancer research to find a cure to this horrible disease.

  • St. Baldrick's
  • Sean Hanna Foundation
  • Alex's Lemonade Stands
  • CureSearch
  • The Rally Foundation for Childhood Cancer Research
  • Cookies for Kids Cancer
  • Bear Necessities
  • B+ Foundation
  • Others listed on KidsCancerFight.org

Children's Cancer Research Articles

If you would like to read a few articles that will give you more insight on the lack of funding for children's cancer research, listed below are links to the articles and websites that do a good job addressing this issue.

* Most of the data referenced above comes from various articles and websites. If there is any information listed above that you believe is inaccurate, please send an email to jimarens@aol.com.