My 80th birthday was so very different than most birthdays I have experienced. This one, instead of looking forward, I spent a lot of time with my two newest, healthy grandchildren looking back into the past. Most of the people like you who donated to my birthday fundraiser have been involved in childhood cancer advocacy in some form or function or just love kids and hate the idea of them fighting cancer.
When I first attended a meeting in Washington, with the Congressional Childhood Cancer Caucus. I heard this phrase over and over from leaders in the NIH, NCI, and others: “We have made tremendous progress in childhood cancer over the last (50 years, several decades, 40 years, 30 years, etc.)” I’m sure you get the picture, I became so irritated each time I heard the leaders version of “progress.”
You and I have been involved with hundreds, no…, THOUSANDS of others who together have helped make real progress. From writing and calling Congress, participating in a 5K or walk, making Lemonade or buying some, shaving your head or contributing to someone who did, attending CureFest in Washington or giving to others so they could make the trip, giving encouragement to kids and their parents who are or were in the actual fight to find a trial, and a cure for their child, rewarding fighters with a gift or two, or the difficult task of helping parents and siblings with their grief. I can’t list them all, but in some way, we all have come together and the result has been progress even if it has been measured in inches, feet, instead of miles, it’s progress. Is it enough? No, but it IS Recent Progress.
Recent progress in childhood cancer
From 1953 to 1999, the first of 7 chemo drugs and 6 other adult drugs were approved for kids.From 2000 to 2024, 51 drugs were approved, 7 or them specifically for kids cancers the rest are adult drugs that are also approved for kids. 67% of ALL kids cancer drugs were approved since 2013.
Funding: In 2015, a brave group of parents, kids and their siblings, on a cold day in February, actually picketed the National Cancer Institute because they wanted more than 4% of the budget for childhood cancer research. It was all over TV and the newspapers! In 2016, NCI spent 5.57%. It has increased each year. Through 2023 NCI claims they spent 9.78%! Do I believe it, NO, but we know it’s a lot more than in the past. Hmm? It may be time for a “More Than 10” campaign!
In 2014 a bill was passed in Congress and signed into law that allocated $126 million for 10 years research for childhood cancer and birth defects and was extended in 2024 for 5 additional years at $63 million. It was named after a 10 year old girl who cracked walnuts with a frying pan on the mall in Washington DC. She would say, “Hello, my name is Gabriella Miller and I have a brain tumor the size of a walnut.” She would put the walnut down and smash it, and invite others to smash one. She wanted to crack a cure for DIPG.
Now, just about everyone has heard of diffuse intrinsic pontine glioma (DIPG) brain cancer. About 300 to 400 kids are diagnosed each year. Until recently, very little research has been done on this terminal cancer that occurs to children. When Jace Ward (age 20) spoke in Washington, at the NCI, he encouraged them to think outside the box and try new things. He was number 2 in a trial that allowed him to live about 2 years beyond diagnosis. He gave data and advice to the researchers that helped kids like 4 year old Mary Stegmueller who lived 41 months past diagnosis.
Today, there are several clinical trials in place that have shown progress. There is hope that a novel drug will be approved very soon that will extend lives longer where there is little hope for more than 9 months from diagnosis.
Significant legislation passed in the last 12 years: The Creating Hope Act, The RACE Act, The STAR ACT, the Childhood Cancer Data Initiative. Together, our community spoke for cancer children who have not had a voice in Congress.
Thank you,
Joe
Four-Square Clobbers Cancer 