From Adversaries to Partners | Richard’s Take on the NCI

Richard PlotkinI was honored to be invited to the February 21, 2014, all day conference at the National Institute of Health (NIH) in Bethesda, Maryland, hosted by the National Cancer Institute Director’s Consumer Liaison Group (DCLG) which included several representatives from the National Cancer Institute (NCI), a branch of NIH. The purpose of the conference was to address the needs of pediatric cancer in an effort to better direct those, like me, who advocate for increased government funding. At the conclusion of the meeting, I had a much better understanding of that which needed to be accomplished to meet that goal. Indeed, I apologized to those present from NIH/NCI for attacking them as I have done for giving “short shrift” to the needs of childhood cancers and said that rather than treat the Government as an adversary, as I had done over the last few years with my criticism of its allocation of funds to pediatric cancer causes, I would from that day forward, until proven otherwise, treat it as our partner.

By way of background, there are over 16 major types of pediatric cancers with those major types being broken down further to over 100 subcategories. Each subcategory requires different treatments. In 2012, NCI allocated 3.9% of its budget for cancer research to pediatric cancers, with the balance to adult cancers. In the latter category, 10% of the funds are allocated to breast cancer; 5.9% to lung cancer; about 5% to prostate cancer and so on. When I had previously communicated with NCI and complained about what I perceived as unfair allocations, I was told it was based on volume – there are “only” 15,500 children each year diagnosed with cancer (19 and under), with “only” 40,000 or so children being treated in any one year. The survival rate from 5 years following diagnosis is 80%, with 370,000 pediatric cancer survivors (survived the five years) living in the United States. The head of NIH had previously testified at a hearing and when challenged on the 3.9% allocation said, “With an 80% survival rate, we must be doing something right.” Nothing can be further from the truth. In fact, if a form of leukemia is removed (ALL) from the equation, which results in 24% of the childhood cancer cases and has a 94% survival rate, the five year survival rate is reduced to about 65%. Also, those children that survive the five years have a ten times greater mortality rate due to heart and liver disease and to reoccurrence of the cancer. Two – thirds of the survivors exhibit side effects over their lifetimes (ranging from relatively minor to substantial, often debilitating) from having been exposed to toxic chemotherapy, most of which had been developed for adults but used on children.

Unlike most adult cancers, childhood cancer research relies almost wholly on the Government for funding. Pharmaceutical companies (industry) do not invest the resources needed to develop pediatric cancer drugs due to the limited population consisting of kids with cancer and given the many subcategories within that limited group. Private foundations do not make a significant impact in the overall funding for research. NCI must step up. When talking in terms of volume, consider this fact. Prostate cancer effects men over 65. It has been documented that the progression of prostate cancer is not aggressive and is slow moving, with most men affected, even if they were not treated for their cancer, would die of some other cause, not cancer. But prostate cancer receives about 5% of the NCI allocation of funds (against the 3.9% allotted to children). Breast cancer receives the highest allocation at 10% of allotted funds, notwithstanding that from industry and private sources, breast cancer research receives about $6.0 billion annually. Lung cancer which primarily affects adults who assumed the risk of being diagnosed with lung cancer by smoking likewise receives a much higher allocation of funds at 5.9%. Should volume of cases determine that funding by NCI for lung cancer research be 150% of what is funded for children’s cancers? Looking at this objectively, which I try to do as an advocate, notwithstanding my personal connection and commitment to childhood cancer causes, I suggest the answer to the prior question is self-evident, a rousing, “No!”.

So, I went to the meeting at the NIH as if I were preparing to try a case in court (my prior occupation was as a commercial litigation lawyer), ready to go for the jugular. Intending to “take no prisoners” as I would convince our adversary, the NCI, the error of its ways. I had thought that by the end of the day, I would beat down those uncaring bureaucrats and carry the torch to victory for our children who are, and those that will be, afflicted with cancer. Well, was I in for a surprise, stating at the end of the meeting, as noted above, “I came today thinking we are adversaries and I am leaving knowing that we are partners in the fight for children with cancer.” I will elaborate on this in the newsletter in April as to what changed my mind.

– Richard Plotkin, Vice-Chair, The Max Cure Foundation