THE BLOG
11/10/2014 04:39 pm ET Updated Jan 10, 2015

Childhood Cancer Awareness Post September 2014

Two years ago I wrote a piece about the overall funding allocation from the National Cancer Institute (NCI) for childhood cancer specific research. My piece was critical of the lack of significant financial investment for childhood cancer research. To many in the childhood cancer community, the overall slice of the pie simply was and still is not sufficient in light of the fact that childhood cancer is the number one disease killer of children. Little has changed since the time of this piece with respect to the actual percentage of the overall NCI budget specifically allocated to childhood cancer focused research. In fact given the budgetary constraints that have been experienced over the past several years, the picture, despite the fact that the overall percentage has stayed the same, is in fact worse. That is the doom and gloom of the fiscal picture.

Fast forward to September 2014 and I am happy to report that there is in fact hope for the childhood cancer community that the efforts of so many parents and foundations are paying off. Since the time in April 2008 when my wife and I heard those horrible words "your child has cancer" the amount of awareness and insistence upon innovation and investment for children with cancer has increased dramatically. This past September 2014, during National Childhood Cancer Awareness Month, there were more gold ribbons displayed, more landmarks lit up gold and more activities here in Washington, DC for advocates to participate in than at any other time since I have been involved with childhood cancer. On Sept. 19, 2014, a historic meeting was held at the White House for a group of childhood cancer advocates and Harold Varmus, MD, head of the NCI (remember that little piece I wrote over two years ago) gave the keynote address. All this is to say that I believe our collective voices are being heard and more importantly, people are listening.

Before his talk, I ambled over to Dr. Varmus, extended my hand and had a quick momentary exchange. He looked at my nametag and immediately recognized me from the Huffington Post pieces I have written about him and NCI. During this short interaction, I told Dr. Varmus that I was simply hoping to share a cup of coffee with him to discuss the state of childhood cancer research at NCI. The moment passed and the meeting began. Then came November 5, 2014. Following the meeting at the White House, I extended another invitation to Dr. Varmus to meet and speak further, and this time it was accepted. And so, I found myself sitting in a conference room in Building 31 on the NIH campus with Dr. Varmus, his deputy director, and two of the top pediatric focused oncologists at NCI. Sitting by my side were Danielle Leach, one of the current Co-Chairs of the Alliance for Childhood Cancer and Gregory Aune, M.D., pediatric oncologist, childhood cancer survivor himself, and recent appointee to the NCI Council of Research Advocates. Once again, I was provided with a sense that as a community, our voices were reaching the right levels and people are listening.

The meeting was set for a half hour; forty minutes after it commenced we all rose from our seats, shook hands and adjourned. During the course of our meeting, we discussed a wide range of topics and initiatives that should directly benefit the community and hopefully drive new innovation for research funded and led by NCI in concert with the private sector. NCI will sponsor a host of meetings for childhood specific cancer research and discussions with the aim to attract new talent and ideas to the table. Overall it was a productive and open discussion that I personally believe signals to the community that NCI is raising the profile of its efforts against childhood cancer. There was no discussion surrounding the overall funding level and that famous percentage we all know too well. It would be great to eek out a little more of course, but at this juncture, this is not a part of the conversation and we must move beyond for the benefit of the children. We as a community of parents, advocates, organizations and foundations need to see and appreciate where we can seek additional gains and attention from NCI and Dr. Varmus for childhood cancer specific research and we must insist that the follow through occurs. And we must ensure that private investment and private innovation not only continues but also more importantly increases.

Towards the early part of the meeting when Dr. Varmus was speaking, I heard probably the best nugget from the meeting overall. Dr. Varmus spoke of the great progress that we have made in treating many forms of childhood cancers. And this is true to a point; many forms of childhood cancer have had little to no change in the prognosis in over thirty years. But then, Dr. Varmus stated that we are not doing well enough and we could and should do better. And that, in my opinion, was the best outcome from the meeting. We can and should do better and do more. We cannot rest upon the gains that have been made in the past. We have doors that are open; it is our job as advocates, parents and human beings to make our presence known through those doors. It is a tiring task, but one to which we must rise to the occasion.