#MoreThan4, Maybe More

Sure, it’s easy to say, #MoreThan4 and we advocates say it very, very often. Sometimes we say it several times in a month. It’s a way for us, the childhood cancer community, to express our need for more money to be devoted to kids’ cancer research. Everyone in our community will tell you that 96% of the research performed by the National Cancer Institute (NCI) is spent on adult cancers. Right?  How do we know it’s right?

NFRP -2018CThe NCI article below highlights  a wide range of efforts being made for children. Granted, not all of these were funded within the 4% budget that we advocates constantly call attention to, some were made available by various pieces of legislation (MoonShot, Gabriella Miller Kids First, etc.), but it is being managed and directed by the NCI and it is benefiting childhood cancer research. I, for one, am amazed at how much these very hard working, and dedicated cancer investigators are doing for our kids. The depths of my family’s gratitude can not be measured. We are so very thankful! After absorbing the article below, and having said that, and not taking anything away from what is currently being done at the NCI, I have decided to continue working as hard as possible to get more research money available for the  children affected by cancer.

Let it be known that when I say, “MoreThan4,” it’s my personal effort and goal to even better equip and support the fantastic men and women who are our frontline childhood cancer fighters at the NCI. Going forward with that thought in mind, #MoreThan4″ will continue to be my battle cry until we are able to change it to something like, #MoreThan5, or 6, or 7.”  I would like be able to say, “#MoreThan5,” but unfortunately I can’t. We are unable to get a clear picture of how much we are spending on childhood cancer.

One thing I wish The National Cancer Institute would do is to make the The NCI Funded Research Portfolio (NFRP) reflective of exactly what the amount is that is spent on childhood cancer research.  The chart above is reflective of the numbers produced by the current NFRP report.

NCI tells us they spend more than 4%. Today, if you were to talk to someone at the NCI about why the NFRP reports reflect that they only spent 3.97% of the budget for 2016 on childhood cancer, the response would be something like this, “Well, that report does not include the basic science/research that is being done in the NCI or NIH that has an indirect or direct effect on the childhood cancer category. The amount NCI spent in 2016 for childhood cancer is more like 5.7%.”

For the public (you and I), the problem is that there is no way for us to easily access the relevant data for “basic science/research” applicable to childhood cancer.  When you make inquires, as we have done in the past, for year 2016 for example, NCI has to get back with you later and when they do, they will give you a list of grants that they say represent what was actually spent on childhood cancer for the year in question.  Why do we have to do that?

According to the information provided on the NFRP report it states clearly that “the NCI employs a sophisticated system of scientific coding in which trained professionals and/or scientific staff analyze grant applications, contracts, and intramural projects to classify each project for its degree of relevance to Special Interest Category (SIC) and Organ Site (SITE) codes. This coding structure is meant to describe in a consistent way the major scientific disciplines requested by NIH, DHHS, Congress, and the public.”

Like any budget, the NCI budget is a plan and plans have to be flexible to take care of emergencies or unplanned events.  The NFRP even provides for such changes and allows for  corrections and updates for two years after the year end.  The report, states, “At the close of each fiscal year, NCI asks each of its scientific organizations to report their research, intramural and extramural programs [they] provide [and they] are then combined to determine the NCI funding totals for individual research areas. The total research funding for each category is reviewed and verified before NCI publishes on the NCI web site, Cancer.gov.”

I believe that if the community could reference an accurate report easily as the NFRP was originally intended, we would not be spending time arguing over what the number is. If the community had confidence in the report, everyone could agree on the number, whatever it is! If it’s 7% great! Let’s fix the report or create a new one that is accurate and easily accessible to the public. Let’s  stop wasting everyone’s time!

NCI does not like to discusss percentages for one disease versus another. They have mentioned on several occassions that since they do not represent NCI’s full investment in a particular cancer type, including pediatrics, NCI  does not promote disease-specific funding percentages like this.  They have told us that approximately half of NCI’s budget is invested in basic science research which has cross-cutting applications. We get it and we too would prefer to have more productive, collaborative conversations on childhood cancer research ideas, needs, progress and future initiatives between the leaders of our community and the NCI.

Until we can find a better way to get some sort of accurate measurement of what we are spending for childhood cancer, I intend to use the NFRP as my reference for how much of the budget is devoted to childhood cancer.  Why? Like it or not, it is a measurement that indicates the type of execution we are planing to give to our priorites.

Please read this great article below:Author: Joe Baber

Revised 1/27/2021