I have been actively engaged in the advocacy fight for more federal funding for childhood cancer since my first trip to Washington DC in June of 2008. This began less than 3 months after I lost my only son, Caleb, to a rare form of Leukemia just 11 days after his fourth birthday. This is what brings me to this cause, my son, a forever 4 year old spiderman fan. In my advocacy experience, with 12 trips to DC, I have observed some legislative advancements which in most cases were never funded. With even minor advancements there has been a continued decrease in federal funding for National Institute of Health through sequestration and inflation adjusted dollars. Latest figures show a decrease of 23% to 30% in NIH funding (adjusted for inflation) in the past decade. Also, this translates to the United States being ranked 10th in the world for government funding of medical research in relation to gross domestic product. And the bottom line remains the same with kids cancer getting less than 4% of the NCI budget. These facts should outrage everyone! We need the best and the brightest right here in the USA taking lead in all medical research and particularly efforts for childhood cancer.
This past week was historical for the childhood cancer advocacy community. With much noise making and hard work of our advocates we have finally received the attention of the leaders that can help us usher in the changes that we need. After years of petitions, individual requests, and other avenues of community efforts, we broke through a glass ceiling that just weeks ago seemed miles away. Three major accomplishments occurred this week in regard to the federal issues. The first accomplishment was that Dr. Francis Collins, Director of the NIH, addressed a childhood cancer audience at the Congressional Childhood Cancer Caucus followed by a short Q & A. Secondly, a select few, which I was humbled to be a part of, were invited to the White House Campus for a meeting with the Office of Public Engagement,(OPE). This is the first step in building a relationship with the White House. The OPE is considered the front door to the White House. Last but not least, at the White House meeting, the keynote speaker was Dr. Harold Varmus, Director of the National Cancer Institute. It is safe to say that even after his presentation the community still has a plethora of questions that remain unanswered, but I believe that the conversation has finally begun and our answers will follow.
Over the weekend the awareness bar was raised to another record level. With the efforts and leadership of Truth365 and the many partnering organizations (too many to mention) CureFest, first begun by Journey 4 A Cure several years ago, brought nearly a thousand individuals and hundreds of organizations together to unite and speak with a clear message that we will not let the status quo continue. This event began Saturday afternoon at the Washington Nationals baseball stadium with an inspiring welcome ceremony that brought the hearts of the community together. There was musical entertainment by survivors and siblings which tugged at the heart strings. There was also an awards and recognition segment of the ceremony that was notable for motivating all those in attendance. Upon conclusion of the welcome ceremony the participants made their way to Lafayette Square ( The President’s Park) in front of the White House for an uplifting candlelight vigil. The community stood in silent solidarity for those who we lost to childhood cancer, for those fighting, and for survivors as well as those yet diagnosed. After compelling testimonies from about 20 parents of angels, nearly a thousand of us marched silently to the gates of the White House where we lit our candles in unison and sang “Amazing Grace” to honor our heroes.
On Sunday everyone was out in full force. Over one hundred organizations and nearly a thousand individuals were represented on the National Mall with the US Capitol in the background. This was an unprecedented opportunity for organizations to network and understand each others missions and efforts. I cannot stress how important this is. Many organizations feel that they are adrift at sea without a beacon. This event ensured so many that they are not alone and we will accomplish our goals with the unity and leadership that this event brings.
We have an amazing amount of momentum from the events of this week and this brings some fears that it will only continue until the end of the month. We are closing in on the end of September, childhood cancer awareness month. The above efforts were all to shed light on the childhood cancer community and the challenges we face. We need a full court press from this moment forward. We cannot sit back and revel in our achievements, we need to build on them immediately. There is a buzz on Capitol Hill today about childhood cancer that has never been witnessed before. We cannot miss this opportunity. Our congressional offices are aware that we are marching in unison and beginning to get our messaging together. As a community, we must not only show our dedication, but we need to lay out a plan and strategies to engage all the entities that are currently at the table.
It is my opinion that we need to engage professional guidance through all the bureaucracies and processes involved in order to capitalize on this momentum. We are arguably the most passionate group that hits Capitol Hill and we need to keep up the pressure. I can attest that sharing my son, Caleb’s story about a little boy who lived like spiderman, has made a difference in the way the people in these offices view childhood cancer. As encouraging as that may be, I can say that the federal government is not the answer to curing childhood cancer. These kids are fighting with a deficit that no other cancer group faces; industry. Adult cancers benefit from industry to the tune of 60% of their overall funding. Childhood cancer currently benefits near 0% from pharmaceutical and industry research investment. In order to overcome this discrepancy we need to get creative and enlist the leadership with experience to overcome this challenge. Most of us involved are parents who were brought into this word the day our child was diagnosed. Although we have the passion and the stories we still lack the leadership to overcome all the hurdles. It is my hope that the organizations in leadership will make the investment in a comprehensive strategy that addresses all aspects and challenges that our families face. Our kids deserve the best strategy and plan to solve these problems. Even if we have to pay the professionals on K Street for it. Lets capitalize on this momentum, stay united and keep up the pressure with the guidance and leadership that our kids deserve. As spiderman and Caleb say “with great power comes great responsibility!”
Author: Rob Whan