No matter when you joined St. Baldrick’s, you’re part of something bigger than anyone could have imagined at the first head-shaving event on March 17, 2000.
On what would have been our 20th anniversary, this year a pandemic had begun. It was a time for regrouping, rather than reflection. But now let’s look at what you’ve helped accomplish, and the challenges we have, to do more for kids with cancer.
Then and Now: By the Numbers
On St. Patrick’s Day of 2000, the first St. Baldrick’s volunteers set out to raise $17,000 for childhood cancer research. They raised $104,000, and a movement was born.
That small group grew into a new foundation in 2004 and is now hundreds of thousands of people standing in solidarity with kids fighting cancer. And the total granted for research, to date? More than $300 million – just since 2005.
When St. Baldrick’s began, the federal government devoted a great deal of funding for basic research to benefit people with all cancers, and about 4% of its cancer-specific funding to childhood cancers. Today that has almost doubled, with the addition of the Childhood Cancer STAR Act and other funding to expand data sharing.
Back in 2000, about 13,500 kids (ages 0-19) were diagnosed with cancer each year – an incidence rate (per million people) of 167.7. Today, more than 15,100 are diagnosed each year, for a rate of 183.1. In fact, the incidence rate has been rising steadily for decades.
Fortunately, the 5-year survival rate has also been rising – from about 79% in 2001 to almost 85% today. But notice the word “cure” isn’t used. Research statistics need to be precise, and a “cure” is anything but that.
As any cancer patient knows, the first goal is to see “no evidence of disease.” (Everyone wants to be NED!) But the real goal is to stay that way. Cancer too often recurs after weeks, months or years. When is a patient cured? That’s not precise.
So the common measurement used is 5-year survival – the percentage still alive 5 years after diagnosis. This makes sense for patients in the later decades of life. But in 5 years, a child may not even get to a double-digit birthday.
You can take pride in helping to raise the survival rate by supporting research for the last 20 years. It’s truly a major accomplishment! Our challenge is to do more, realizing 5-year survival and a cure are not the same.
Many children are still in treatment – or back in treatment – 5 years after diagnosis, with an uncertain outcome. Others survive longer than 5 years, but with major health problems they will battle for the rest of their lives. Many others die more than 5 years after diagnosis.
Accomplishments and Challenges
Let’s go beyond the collective stats for all childhood cancers, to look at some specific types.
As a shortcut, we say “survival,” but these are comparisons of 5-year survival (see above) for kids diagnosed in 2001 and 2011. The latter reached the 5-year mark in 2016. It takes time after that for the data to be collected into the national registries, analyzed and reported, so these are the most recent stats available.
Acute lymphoblastic leukemia (ALL): Survival rose from 84% to 88%. Researchers have learned there are many subtypes of ALL, with different survival rates and needing different treatment plans.
Acute myeloid leukemia (AML): Survival rose from 53% to 66%. AML is a disease that also strikes older adults. In recent years, researchers have discovered major differences between how this disease behaves in older people and in children.
Bone tumors: Survival rose only from 68% in to 70%. These cancers have proven very challenging, with few significant improvements in therapies for many decades, despite dedicated research.
Brain tumors: Survival rose only from 70% to 73%, but there are many, many subtypes of brain tumors – some seeing significant progress, and others – like DIPG – still having no cure.
Hepatic (liver) tumors: Here we saw more progress, from 51% to 87%. Survival of hepatoblastoma, the most common type, rose from 62% to 88%.
Non-Hodgkin lymphoma: Survival rose from 95% to 97%.
Soft tissue sarcomas: Survival rose only from 72% to 74%, so these cancer types remain quite challenging.
No child is a statistic, of course. Some survive even the most difficult cancers, and some die of even cancers with the highest survival rates. Thank you for caring about them all.
The St. Baldrick’s Factor
While no one group can claim credit for the overall progress in childhood cancer, as the largest non-government funder of research grants, St. Baldrick’s has played a role in almost every advancement since we came on the scene.
Your support has also prepared the next generation of researchers – training 141 new pediatric oncology researchers (St. Baldrick’s Fellows) and launching the early careers of 131 young researchers (St. Baldrick’s Scholars). Many have already become leaders in the field.
You support every stage of research – from early discovery to clinical trials. You support the sharing of data between researchers; major breakthroughs in immunotherapies and precision medicine; the slow, steady progress that isn’t flashy but so necessary; and the big ideas that change everything.
Mostly you support real kids – infants, children, teens and young adults who are in the fight of their lives. You give their families hope, honor those we have lost, and stand up for every child.
Thank you for the first 20 years. Despite the challenges facing us all today, please stay with us and continue to support research. Together, we’ll save more lives, even this year.
Together, let’s #GiveKidsALifetime!
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