Open Letter to Harold Varmus

In this Monday, Oct. 10, 2011 photo, the box for a Sephora Collection Pink Eyelash Curler is displayed in Philadelphia. Advoc
In this Monday, Oct. 10, 2011 photo, the box for a Sephora Collection Pink Eyelash Curler is displayed in Philadelphia. Advocates are asking whether breast cancer awareness has lost its focus, and become more about marketing than women’s health. Pinkwashing, a word coined by activists, is a practice being described as when a company or organization does a pink breast cancer promotion, but at the same time sells and profits from pink-theme products. But pink ribbon groups say such sales help to fund millions of dollars of research to find cures for the disease. (AP Photo/Matt Rourke)

Dear Mr. Varmus:

As head of the National Cancer Institute (NCI), you have great responsibility. First, in fiscal year 2012 Congress provided you with a budget of $5.2 billion dollars. This represented a 3 percent increase in funding. Not a significant amount, I understand. Of the funding by cancer type in the reported fiscal year 2010 budget for NCI, the largest segment of that went to breast cancer research for a total of $631,228,554. In 2010, the total combined amount of money spent on pediatric/childhood cancer research collectively by NCI was $197,100.000. This represents four percent of the total budget, and this amount has remained flat at four percent for years. This is a paltry sum considering childhood cancer remains the number one disease killer of our children in this country. Scientists and those who like to throw around statistics like to tell you that, overall, childhood cancer is quite treatable with an approximate 80 percent "cure" rate. Unfortunately, this number causes many to believe that we are winning the war on childhood cancer. Nothing could be farther from the truth. Take the type of brain tumor my daughter Alexis passed away from, DIPG. No advancements have ever been made in the treatment of this tumor. The same can be said for many other childhood cancers. So, yes, if your child is lucky enough to be diagnosed with the few types of childhood cancers that have an 80 percent cure rate, you are "lucky."

With this background in mind, I have several questions Mr. Varmus, and I would love to be able to sit with you to discuss them. First, it appears to this father that your recent testimony before Congress leads one to believe that NCI's direction of childhood cancer funding is sufficient. Your comments suggest that mortality rates are dropping and long-term side effects from treatment are being controlled better as well. Your comments are frankly very damaging, foreclose many future federal childhood cancer-funding projects and lead people to believe that we are coming out on top of childhood cancer. Unfortunately Mr. Varmus, nothing could be farther from the truth. For many of us in the childhood cancer community, we have witnessed firsthand how untrue these commonly held concepts are today.

I am not an opponent of funding breast cancer research. I do not ever want anyone to think that thought. However, if you look at the amount of money raised both on a federal and private level for breast cancer research, it is very disproportionate to that of childhood cancer that I would expect that it would make you at the NCI rethink the funding distribution. Recently, on a Delta flight from Atlanta to my home in Washington, D.C., I was reading an article in their in-flight magazine ("Wheels Up," Oct. 2012) discussing private funding raised for breast cancer research. It being October, Delta was participating for one of the many foundations out there raising money for the "pink" cause. The article stated that in fiscal year 2011, private foundations raised approximately $6 billion dollars for breast cancer research. That is billion with a "B." Part of my indignation comes from jealousy, I understand that fact. With that said, most of my amazement simply comes from the point of view that childhood cancer is put in the corner by legislators and those in control of the federal pot of money. Ordinarily Congress trots it out once a year in September to pat themselves on the back during National Childhood Cancer Awareness Month. That, Mr. Varmus, is where you fall.

Please do not take anything I have said with any disrespect. You are a Nobel Prize winner, a physician and you have been in the "cancer game" far longer than I have. You are obviously eminently more qualified than I to be discussing these issues. Of course, I still would like to know why you present the image that childhood cancer is not -- and should not be -- a top priority on the federal funding level. This inevitably leads to such disparate treatment, including the failed appropriation for the Caroline Pryce Walker Conquer Childhood Cancer Act. Watching my daughter take her last breath as a result of an insidious cancer makes me question your statements and conceptions regarding childhood cancer. And seeing the flood of pink, reading about how much money is raised privately, and viewing your budget, I certainly believe that my questions are more than valid.

Mr. Varmus, I would love to continue this conversation. I am quite easy to find and live just a short 30 minutes from the NIH campus. I would be more than happy to buy you a cup of coffee and have this discussion, anytime, at your convenience.

Thank you,

Jonathan Agin