On January 31, 2013 we had a nice birthday celebration for my daughter who turned seven that day. People met at a local bowling alley for a game or two and then had some cupcakes. These were two of Alexis' favorite activities. About 15 to 20 kids and their parents were able to attend. It appeared, just from my outside observation, that all the kids had a good time and the sickeningly sugary pink cupcakes were a hit. They quickly disappeared in a frenzy of little sticky fingers. Everyone enjoyed the party. Everyone except my daughter Alexis. She passed away on January 14, 2011 from an inoperable brain tumor that has no cure, no viable treatment options and no change in prognosis in over 30 years of its classification. Welcome to the world of childhood cancer. It strips away children from their families and exists in such obscurity despite its position as the number one disease killer of our children in thiscountry.
Prior to her birthday, on January 28, 2013, I was invited to meet with a handful of members of the National Cancer Institute (NCI) as a result of my Huffington Post piece titled, "Open Letter to Harold Varmus". During the course of my meeting, I was quite surprised that on several instances it was suggested that the overall funding allocation does not matter. Of course I took exception to this assertion. It could not be more important that the federal government, through the direction of NCI ,does more to fight childhood cancer. Of course, Dr. Varmus was not present at the meeting and so, I often directed my arguments to an empty chair at the head of the table. I felt a little like Clint Eastwood at the Republican National Convention. I understand that Dr. Varmus is an extremely important figure, and I truly intend no disrespect. It is simply a shame that in my opinion Dr. Varmus does not believe that childhood cancer is an important enough issue to address.
Malcom Smith, M.D., PhD, the Associate Branch Chief for Pediatric Oncology, one of Dr. Varmus' team, attempted to argue that it truly does not matter that the funding allocation for all types of childhood cancer is less than 4 percent of the overall NCI budget. In fairness, Dr. Smith made the point, and this is the "party line" that allocations on funding should not be viewed in a vacuum for each specific disease. Rather, discoveries in the lab and treatment in one form of cancer often have impact upon other types and frequently translate down to childhood treatments. Point well taken I suppose. Of course, with this mentality, we ensure that childhood cancer continues to have a low cure rate despite the overall statistics used to laud some of the success. Specific childhood cancer focused research then lags behind that of most adult cancers, and our kids wait for outdated treatments to filter down. Dr. Varmus frequently likes to state that the overall cure rate for childhood cancer is 80-85 percent. This is not an accurate depiction of the state of childhood cancer. If you remove ALL, or Acute Lymphoblastic Leukemia, from the statistics, the actual number of children "cured" of cancer is likely to decrease dramatically. DIPG, the tumor that took my daughter's life, has a mortality rate of approximately 99 percent. In addition, those kids with an 80-85 percent cure rate suffer immeasurably from the very treatments that are the cure. Barbaric forms of chemotherapy and radiation are utilized, ensuring that many of the cured will not lead normal lives or die prematurely.
The meeting continued though, and my focus turned to the Recalcitrant Cancer Research Act of 2012. I've written about this act before in previous pieces. The Act calls for Mr. Varmus to initially designate two types of cancer as "recalcitrant" thus creating a focused research framework at the federal level for these specific diseases. Both pancreatic cancer and lung cancer are almost certainly the two that will garner this initial designation. If you read the legislation though, it is clear that Dr. Varmus has the discretion and power to make other selections for additional types of cancers, and that those selections do not have to fit within the numerical criteria proscribed by the law. That takes me back to my meeting. As we discussed the legislation, Dr. Smith yet again said that having DIPG or any type of childhood cancer designated as recalcitrant "doesn't matter." I wrote those words directly onto the pad of paper that I had in front of me as yet again I could not believe they were spoken. Dr. Smith, it matters because legislation that could potentially and positively impact the childhood cancer community on the federal level is quite rare. It matters because it presents an opportunity to gain additional review of the problems that plague the community. There are quite possibly several reasons why the members of NCI would believe that it does not matter. I do not know whether it is complacency, the attempt to appease Dr. Varmus or simply being out of touch with the childhood cancer community and the dreadful federal funding paradigm? Any of these answers is quite problematic and equally plausible I suppose.
NCI and NIH are both amazing institutions. The practitioners and researchers are at the forefront of the battle against cancer. The physicians who practice medicine at NIH and care for patients are some of the most caring and forward-thinking in the world. We were fortunate to work with an amazing doctor there, who in my humble opinion is one of the most amazing people in the entire battle against childhood cancer and DIPG in the world. Simply stated, I am honored to know and work with her. My frustration rests squarely with one individual, Harold Varmus, M.D. It is his continued disinterest in childhood cancer, whether perceived or actual, as well as his disdain for directed legislative action aimed at NCI that I personally believe frustrates those of us who seek an increase in federal funding for childhood cancer. While he remains in charge of NCI, childhood cancer will not be a priority for his administration.
Thankfully, the childhood cancer community is poised to create more awareness of the plight of our kids than at any other time. We will ensure that these and other issues will not remain set in the corner and forgotten. Dr. Varmus, it certainly does matter.