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
Hi, great summary! This is just my own opinion, I think that the current “immunotherapy era” of cancer treatment is going to start changing the involvement of industry in developing drugs for childhood cancer. There was an FDA ODAC pediatric subcommittee meeting in November 2013, specifically to discuss potential of the PD1/PDL1s. There is publically available info on the FDA site about various studies being planned by the various companies, and these types of pediatric studies are slated to start soon. Slides etc with lots of details here: http://www.fda.gov/AdvisoryCommittees/CommitteesMeetingMaterials/Drugs/OncologicDrugsAdvisoryCommittee/ucm341089.htm Overall, immunotherapy is being heralded as the biggest leap forward in adult cancer (I agree), and the companies see the potential for kids. Then you have Genentech in particular, which has adopted an unprecedented focus in pediatric drug development. So I get the sense that the mindset is changing, and that the door is cracked open to do even more. Unfortunately, getting these studies designed, approved, and open takes time… Which a lot of kids don’t have… I do believe that positive change is going to come, but we must all work together and continue to push via continuous, productive dialogue involving all parties. Ps: we chatted at the golden toast, thanks for sharing Caleb’s story
From Rob Whan to Laurie Orloski,
It was nice to meet you. I agree immunotherapy will make many advancements in the near future and I hope you are right in regards to industry involvement. I was on the hill with rally for medical research on Thursday with 2 PhD who study at Moffit, one of whom studies immunotherapy. Both were young and energetic with great ideas to bring to medicine. It was sad to see them pitching congress to invest in their future before they were forced to move on to a more lucrative career. I hope Genentech continues to lead by example and more importantly I hope their efforts translate into new drugs that save lives. I appreciate your comment and look forward to chatting in the future. Rob
Agreed, Rob, Agreed. Now on to the next steps as we hit the elections and keeping the conversations and momentum high as we head into the new year. It is also important that everyone work together and keep that sense of unity as we move forward.
From Rob Whan to Danielle Leach:
Danielle, I appreciate your engagement and look forward to your ideas. I know we will pull our resources together and make it happen. If we don’t who will? Thanks for the feedback. Rob
Excellent article! There is strength in unity and we believe remaining united, moving in lock step with our demands to fund more childhood cancer research will help us overcome the hype and barriers.
I have great respect for Dr. Collins and feel he was genuinely sympathetic. But, let’s face it, budget cuts are here to stay … partially because as Dr. Collins alluded to, after the surplus in the 90s, all Federal agencies started to grow. The NIH budget doubled, but did the childhood cancer research budget double from 1998 to 2014?
All Federal agencies are faced with reducing budgets and they are required by law to deal with it by setting priorities and identifying Federal programs that will deliver the most bang for the buck. Budget requests should line up with their mission and strategic plans and demonstrate annual performance. If a program isn’t delivering decision makers are supposed to use that information to make decisions for the next budget year. This means looking at long-standing programs that don’t measure up in terms of delivering programs effectively and efficiently in terms of agency mission and goals. It seems clear that this is not how NIH is making funding decisions.
The NIH mission is clear. The budget discussion is a tough one, but there is much smoke and mirrors in the discussions. Talking about inflation, losing potential brilliance in the scientific community and saying they can’t do much without more money is disingenous — more money is not coming.
NIH needs to approach budget decisions based on what will deliver the most results to society. They should not be piling on dollars year after year into programs that have hit a plateau or are delivering very little. Although progress can be made in some of these long standing programs, more progress might be made in programs that have had little to no investment. It seems to me that investing in childhood cancer research has a great potential to save lives as well as reduce life altering impacts to survivors that have long standing costs to childhood cancer survivors and society.
The pressure also needs to be on appropriation committees. Authorization bills rarely get funded unless there is simultaneous agreement with the appropriators. The House has not addressed this issue at all in appropriations. Why not? This is a question. The Senate has provided report language over the past few years that suggest NIH invest more to childhood cancer research but nothing has happened. If the appropriators were serious they would put this in Bill language and require an investment.
Thank you again for your great article about this push for childhood cancer awareness in Washington this past weekend, and I couldn’t agree more that we need to continue to move the momentum forward.