Childhood Cancer Awareness Month
from cac2.org
What does that mean?
An estimated 2,000 children die of cancer each year, and the overall incidence of childhood cancer has been slowly increasing since 1975. Despite significant advances against certain pediatric cancers, including acute lymphoblastic leukemia, there are still some types of cancer for which there are few or no effective treatments.
Unfortunately, new drug development for pediatric cancers is slow, often lagging way behind adult treatments, and few treatments are designed specifically for children. Many parents of pediatric cancer patients have concluded that the pharmaceutical industry has no interest in producing treatments for their children. They are not wrong.
This is not a surprise if you are in the business of making money. Childhood cancers make up less than one (1) percent of all cancers diagnosed each year, according to the American Cancer Society. That one percent is not much of a market for drugmakers, who rack up an estimated $1.4 billion in out-of-pocket costs while bringing a novel drug to market. These dollars cannot be recovered through the treatment of 800 children diagnosed with neuroblastoma annually, or the 200 children diagnosed with a deadly brain tumor. The stories of pain, extended hospital stays and endless grief are too many to list. One of these families, the Bartels, live with their loss every day. How can we tell them, “Sorry, your child is not worth the investment”?
Cameron and Stewi Corno with Tasha at the 6th Annual Research Symposium in June 2022.
The pharmaceutical companies look at the treatment market as a business. But, if your child has a pediatric cancer, where does that leave you? Well, you are at the mercy of your child’s oncologist. Thankfully, there are success stories. Meet Cameron Corno, who was fortunate to have research on her side.
The elephant in the room is the cost of research balanced with the relatively small potential (pediatric) market. Where the pharmaceutical industry is absent, government has traditionally stepped in. Most pediatric clinical trials are operated by the National Cancer Institute (NCI.) For those of us who live in this community, we are keenly aware that the percentage of government research funding allocated for pediatric cancer has languished for years around 4%. Last year, the amount was doubled to 8%, and while promising, that is still a small percentage compared to the funding that adult cancer research receives.
That is where private charities must step in to fill this critical need. Organizations like The Children’s Cancer Foundation, Inc. (CCF) are necessary not just in funding the research for treatments and cures, but in strengthening the pediatric research field, and supporting the innovative thinking, as we do, through the CCF Giant Food NextGen Award. We need to fund the identification of treatments and cures that will be less toxic – ones that do not later plague patients with secondary cancers and other diseases, physical and cognitive impairments and symptoms that can be worse than the disease.
Children are our future. It is our collective obligation to ensure they survive. It is simply not acceptable for a child to have cancer, let alone be diagnosed eight times. The Carver Family lost their beloved Juliana to a rhabdomyosarcoma. If we can agree that research is the key to survival, I hope that more organizations and individuals will realize that they can make a direct impact by ensuring children facing a diagnosis of cancer will live into adulthood.
Tasha meets with Juliana Carver in 2014.
Every day, CCF looks for donations so that every young patient is assured a cancer-free future. CCF believes that investing in research is the path to ensuring that a cancer diagnosis does not mean a life with endless pain and delays- and actually means life!
While we have a long way to go, please join me in congratulating CCF’s 2022 Awardees and programs in our area that we believe will help us identify better treatments and cures for pediatric cancers.
While we fight for kids with cancer every day, September is our month to raise awareness and advocacy on behalf of those who so often do not have a voice. We hope that you will join us in this effort through September, and throughout the year.
In partnership,
Tasha Museles
President
The Children’s Cancer Foundation, Inc.
