In our world, when something is considered to be rare, it usually denotes that it has value. Everyone would agree that the Hope Diamond and Leonardo De Vinci’s Mona Lisa, painted in the 16th century, are rare and very valuable. Examples of rare and also more contemporary items range from a penny such as a 1943 Steel Wheat Penny, which is worth $110,334, or a 1963 Ferrari 250 GTO automobile that is valued at a whopping $70 million!

When labeling childhood cancer as “rare,” contrary to the above, it actually devalues it and all the children it affects. Often when complex problems are given the label “rare,” it’s because people decided that undertaking exhaustive efforts or expenses are not warranted to correct a problem that does not happen frequently. “The cost of the effort in correcting the obscure, takes time and resources away from the needs of the masses which are obvious.”

Today, most large medical institutions and organizations, even the National Cancer Institute use the word “rare” in describing childhood cancers. Yes, compared to such adult cancers as breast, lung, colon, and prostate cancer, kids’ cancers such as neuroblastoma, Ewing’s sarcoma, AT/RT, or DIPG are not seen nearly as often. Referring to the childhood cancer category, which is smaller, as “rare,” is not appropriate. Because cancer does not happen to the majority of the adult population, it’s just as inappropriate to label that “rare.”

Childhood cancer can’t be “rare” when it strikes more than 400,000 worldwide every year. How can it be considered “rare” when, in less time that it takes to read this short post, somewhere a child has been diagnosed with cancer?

If we insist on labeling childhood cancer as “rare,” then we must acknowledge and label what we spend to find a cure even more “rare.” Maybe, that’s why parents and advocates are always asking for more. Because for years, NCI only spent 4% of their research budget on childhood cancers, advocates complained to the NCI with shouts of, “More Than 4!” Today it’s about 8% and that’s progress, but most advocates will continue to say it’s still not enough. Will we hear shouts of “More than 8” in the future? I’m willing to bet on it.

Author: Joe Baber

updated 8/1/2025