The Plight of Pediatric Cancer

Today, as you attend work or school, visit friends, or meet someone new; please tell them a bit about childhood cancer. How it remains underfunded and under-recognized as the #1 killer disease of our children today. That's OUR children.

Chances are 1 in 285 that any child will be diagnosed with cancer before age 20 (That's 15,780 kids every year!). 20% of those diagnosed will not survive five years.  Every 4 hours a child dies from cancer. Another 14% of those will die young- before the age of 30- often from a secondary cancer caused by treatment. Of the 80% that do survive 5 years, 60% are impacted by the cure; resulting in long-term health effects including secondary cancers, loss of limbs, major organ damage (not to mention minor organ damage), infertility, PTSD, heart failure, and social/learning disabilities.

It is widely recognized that the progress in cancer survival rates among children is the result of successful clinical trials, where work from our nation's laboratories is translated into clinical application. For children, the standard of care today is to be treated in a clinical trial, and more than 70 percent of children with cancer participate. That compares to only about 3 percent of adults (and only 1.5 percent of Medicare patients) with cancer who are enrolled in clinical trials.

The triumphs over childhood cancer are to be celebrated, but there continue to be limitations on pediatric cancer research. Just a small fraction of the dollars spent on research in this country is directed to pediatric cancer.

When my child was diagnosed with cancer, I had no idea the plight of pediatric cancer in this country.  I have received quite an education in the trenches and have felt God's calling on our family to make a difference in this fight.  I have had many conversations with individuals about much of this information.  I have written posts about many of these facts, figures, and organizations.  But I have never taken the time to consolidate it.  So here goes... 

Childhood cancer is severely underfunded both publicly and privately.  All 47 pediatric cancers (12 major types) combined only receive 4% of the national government funding, yet kids make up 20% of our population! For every dollar spent on a patient with breast cancer, less than 30 cents is spent on a child with cancer.  What does this mean for a bottom line? In 2007, breast cancer research received $843 million in government funds and $256 million from the private sector.  The combined total for childhood cancer was $130 million.  Why does this discrepancy matter?

The current treatment for breast cancer involves targeted therapies, immunotherapy, and genetically-tailored treatment plans.  The survival rates for breast cancer are 90%.  The average age for diagnosis is 61 years and quality of life and health is preserved in most cases.  For children the exact opposite is true.  The average age of cancer diagnosis is 6 yrs and 80% of cases are metastatic disease (already spread).  The prognosis is fatal for 20% and lifelong debilitation and disease for 60%.  The remission rate is only 27%!! That is a loss of 71 years of healthy life.  The average age of diagnosis for all the other types of cancer combined is 67 years and billions of dollars are being poured into research. Prostate cancer for example has a 99% cure rate, but receives the third highest level of government funds (after breast and lung cancers).

Sadly, this bias continues in the private sector.  Pharmaceutical companies fund 60% of all adult cancer research, but virtually none for pediatric cancer because it's not profitable. Let those words sink in for a minute... 

Consequently there are currently 900 adult cancer drugs in the development pipeline and few to none for kids. The American Cancer Society is probably the most well known national cancer organization  For every $1 raised at a Relay for Life event, less than half a penny is given to pediatric cancer research grants or patient support.  They love to kickoff their events with childhood cancer patients leading the parade and put our children's faces on their propaganda, but they fail to follow through. Our kids are the forgotten ones no one wants to think about.

I'm sure everyone is aware that October is breast cancer awareness month.  It is a tremendously successful fundraising campaign. Breast cancer awareness... from product labeling, to network recognition, to corporate donations, to media attention, and pink ribbons.... continues to trump every other type of cancer.  It is our hope that we can follow in that same successful footsteps with childhood cancer. September 2017 was one of the first years we have begun to see a national movement. A huge, heartfelt thank you to MLB and MLS for going gold in September. There were also many big cities across the US that stepped up for the first time. Let's keep it going.

How does underfunding affect childhood cancer treatment?

Of the 120 new cancer therapies for adults approved by the FDA between 1948 and January 2003, only 30 have shown use in children. Of those 30 drugs, only 15 acquired any labeling for pediatric use during that same 55-year period. Source: Molecular Cancer Therapeutics, August 2006.

Over 55 years, 15 new cancer drugs labeled and approved for children, compared to 120 for adults. In the past 40 years, when medical science has exploded, only 1 new drug has been developed for pediatric cancer.  ONE!!! We should be ashamed of ourselves.

Everyday parents are given the life shattering news that nothing more can be done for their child.  Can you imagine anything more heartbreaking than having to tell your child you can't help them?  These courageous children who want to fight and want to simply live have nothing left to do.  In a country that happily spends $5 BILLION every year on halloween and $56 BILLION every year on their pets, you can't help but question our national priorities.

All of this probably leaves you wondering, why is pediatric cancer funding so neglected? This is the million dollar question.

I think there is a large misconception that it is being "taken care of".  We live in the richest country in the nation.  We step up to help whenever catastrophe arises.  We have the best medical institutions and researchers in the world.  We are the home of St. Jude hospital and they never turn any child away.  Right?! Well actually, St. Jude's serves 400 families a year (of the over 50,000 total kids in cancer treatment).  The children accepted must fit into their current clinical trials.  The rest are turned away. St. Jude research does benefit other patients and they do consult on other cases, but of the total money they raise 20% goes to fundraising and administration, 60% goes to the comprehensive care and treatment of the 400 families in their care, and the only the remaining 20% goes to research.  They have tremendous facilities, extraordinary doctors, and a comprehensive approach, but they are like the country club of cancer, that serve an elite few. St. Jude's is doing amazing things and have made tremendous strides for all children with cancer, but the majority of the country thinks they have it all under control and any child with cancer can be treated at their hospital.  That is far from the truth.

The majority of children with cancer (90%) are treated at a group of 200 local hospitals who belong to the COG (Children's Oncology Group).  This amazing organization was formed ten years ago to unite the clinical trials and research being conducted worldwide.  This ensures that no matter where a child is treated they are receiving the most current protocol and their results are benefiting research everywhere.  The COG combined with  the National Childhood Cancer Foundation to form CureSearch.  Here is a link to their major successes so far.  And 95% of their funding goes directly to research!! Only 1% of charities can make that claim.  Curesearch needs to become the name and face that everyone associates with cancer.  And second and third in that running would be St.Baldrick's and Alex's Lemonade Stand who are committed to pour money directly into research for kids' cancers and are funding additional grants at COG hospitals. 

While the above organizations and their work are exciting and life-changing it is also a travesty that the work of raising awareness and funding is falling on the shoulders of the parents, friends, family, and the kids with cancer themselves. This is an outrage! As if fighting cancer is not hard enough the burden of finding treatments and cures falls on our shoulders, too.

Right now, we are trying to pass the STAR Act in Congress. We have the support in the House, but are still working on the Senate. More importantly we need this bill to come up for a vote in the limited days of session that remain. Help us by contacting Congressman Upton, the chair of the Energy and Commerce Committee, with positive pressure to bring this bill up for a vote before the end of the month.

And for the nitty gritty of how childhood cancer ended up in this predicament, there is a wonderful article from the American Association for Cancer Research.  It essentially boils down to the following:

• Kids' cancers are not profitable to drug companies.
• Kids do not vote.
• Kids cancers are different than the same cancer in adults all the way down to the molecular level.
• Kids' cancers behave and respond differently. (They are different cancers with the same name.)
• There are too few kids as a total research base.
• Kids get the hand-me downs of adult treatments.  Pediatric formulations are not always available and they metabolize drugs differently.
• Kids bodies are not little adults and every system is affected as they are rapidly growing and developing.
• There are complex ethical issues with kids.

But thanks to organizations such as CureSearch, the COG, St. Baldrick's, Pablove, Alex's Lemonade Stand, PAC2, AND the parents, families, doctors, and nurses in the trenches; these roadblocks are being attacked brick by brick and in the war against cancer there is HOPE for our kids.  But that hope depends upon the continued support of compassionate individuals and public awareness.

As I finished typing this post one of my favorite commercial came on TV, not a coincidence. You may have seen it. The Hyundai  Hope on Wheels campaign has a new ad. They have given $85 million to pediatric cancer research grants in the past few years. It is a glimmer of hope that the nation is taking notice...

(and a cool feature... one of the hand prints on the wall is for our own Vinny :) love it!!)

And in 2015 I had the privilege and honor of speaking at the Hyundai Hope on Wheels event at our own Brenner Children's Hospital. One of our oncologists, Dr. Sharon Castellino received a $250,000 grant for her research on finding preventative diagnostic markers for pediatric cancer survivors at risk for heart damage from anthracycline chemotherapy. This research hits close to home for us as Julia received doxirubicin during her own treatment. Now her hand has been added and her story has become part of the fight...