President Obama called for an end to cancer in his State of the Union Address to the nation this year. He tasked his own Vice President with the job and since then the buzz word “Moonshot” has offered renewed hope for millions of Americans. Every one in our childhood cancer community is very excited about Joe Biden’s very aggressive initiative. He calls it, the Cancer Moonshot. Mr. Biden’s son Beau died of brain cancer a year ago. Like all of us affected directly by cancer, it’s made him extremely passionate and focused about finding cures for this terrible disease. No parent should ever see a child die from cancer.
Mr. Biden wants to approach cancer research with real gusto, the same way America came together to successfully put a man on the moon in the late 60’s. The Vice President has spent several months visiting a host institutions involved in finding cures and will visit more in the future. Along the way, he has found such obstacles as silos that resist information-sharing, territory wars and competition among researchers. He will also find that some government regulations meant to protect patients and improve drug development, are also a few more major impediments that will need to be cleared to get this “Moonshot” off the ground.
The Vice President identified two major goals: 1.) Increase resources — both private and public — to fight cancer.
2.) Break down silos and bring all the cancer fighters together — to work together, share information, and end cancer as we know it.
He went on to say, the goal of this initiative is simple — to double the rate of progress. To make a decade worth of advances in five years. “Over the next year, I will lead a dedicated, combined effort by governments, private industry, researchers, physicians, patients, and philanthropies to target investment, coordinate across silos, and increase access to information for everyone in the cancer community.”
We are totally on board with the Vice President! But, first we want to make sure all moon mission workers are aware of the major obstacles that childhood cancer has faced ever since President Nixon first declared War on Cancer in 1971.
The Vice President wants to hear our stories of how cancer has affected us and our families. The White House has provided a site to collect all the stories. We would be remiss to not urge everyone in the childhood cancer community to send them in. We need to let Joe Biden know that childhood cancer is not rare, but is a major national problem. One way we can make a point is to have a excellent response in submitting our stories.
When writing consider the following points:
First: We need to make sure that everyone on the moonshot mission understands that childhood cancer is not the same as adult cancer. Kids are dying from twelve weirdly named cancers that have over 100 subtypes and none of them are breast, prostate, lung, colon, or other familiar sounding adult cancers.
Second: Everyone at mission control needs to be acutely aware that childhood cancer is the number one disease killer of kids. It was in 1971 and it still is. As a matter of fact, the rate of incidence has increased since Mr. Nixon declared war on cancer.
Third: When it comes to cancer research funding, all twelve of the childhood cancers lumped together receive less funding from the National Cancer Institute than prostate cancer alone. Nixon’s war on cancer has been going on for 45 years! Our children have been left behind. There have only been 3 drugs developed specifically for childhood cancer in the last 45 years compared to 60 new cancer drugs for adults in the last five years alone! Today, after all those years, we have to embrace adult cancer drugs which are toxic and cause 95% of the survivors to have very serious health issues. Parents are shaving heads, selling lemonade, baking cookies, organizing walks and races to try to add more research funding. NCI has done little to address the such recalcitrant cancers as DIPG and others that are so prominent in our community and continue to take our children daily. A child whose life is taken by cancer loses nearly 70 years of life!
Forth: We have waited and waited to see progress. We are tired of waiting only to see our government continue to call this disease rare and therefore not a high priority. Children should be our highest priority. We are tired of having leaders point to the “tremendous progress” we have made in childhood cancer survival rates in the last 50 years. Must I remind you that we are comparing today’s survival rates to fifty years ago when we were doing absolutely nothing but sending kids home to die. The truth is we have made little to no progress in the last ten years. To double this progress over the next five years as the Vice President said won’t mean much in the childhood cancer arena. We need to do much, much more than we have in the last decade.
We should take the attitude that we are not going to accept status quo on this Moonshot effort. Children deserve priority placement and a first class ticket to progress that is expected on this journey. It’s about time! We don’t have more time. Enough children have died from this horrible disease!
Author: Joe Baber
A week after this post was published, the White House issued a Fact Sheet with more detailed information. While we are very pleased and grateful that pediatric cancer was identified as one of the moonshot’s research opportunities, a fact with which we certainly agree, we will continue to question priority setting while monitoring levels of investment, and breadth of investigations. One thing Nixon’s 1971 War on Cancer taught us is to not take anything for granted. We can not afford to let our children get lost in the shuffle.