THE BLOG
09/04/2013 04:52 pm ET | Updated Nov 04, 2013

Thanks for Nothing, Mr. President

Quite some time ago, a petition was circulated to "Light the White House Gold." The ask was simple: Come September 1, or the beginning of Childhood Cancer Awareness Month, put some gold lightbulbs in the spotlights out front of the White House and tell the childhood cancer community and all the kids fighting and dying of cancer that they matter. The president, through Paulette Aniskoff, Deputy Assistant to the President and Director of the Office of Public Engagement, dropped the news that there would be no gold lights. There was a recycled proclamation, though, so maybe we should be happy for this small token. Of course, most of you will recall that last year on October 1, a giant pink ribbon and pink lightbulbs were festooned quickly on the White House. Should the White House go "pink" again in a month, it will be a significant slap in the face to the childhood cancer community. Yet another gesture of inequality for our kids.

Cancer remains the number one disease killer of children. Cancer kills more kids in this country than AIDS, cystic fibrosis and muscular dystrophy combined. So, when the long awaited response came from the president, you can understand why it was quite disappointing.

Of course, lighting the White House gold would not cure any children or provide additional research funding. But that is not the point. I would gladly choose additional funding in the federal budget over a handful of gold lightbulbs. Again, that is not the point. Childhood cancer advocates fight so hard for every ounce of awareness in an effort to translate it into additional funding. What better symbol to raise the ultimate amount of awareness than the most powerful residence on the face of the earth? At the present time, a paltry 4 percent of the total National Cancer Institute Budget (NCI) is dedicated to all forms of childhood cancer. Thank you, Harold Varmus, M.D. That brings me back to the small little ask that apparently is only reserved for the ubiquitous pink ribbon.

What is the message here to the childhood cancer community? Kids with cancer do not matter as much as breast cancer? If kids with cancer do not merit more than 4 percent of the federal research budget, and childhood cancer is not important enough to garner the simple gesture of a handful of gold lightbulbs, then what is our position? I wish I had the answer to that question. I hope that it does not mean that children with cancer do not merit the same simple gestures and considerations as breast cancer. It certainly appears that way though.

Ultimately, a handful of lightbulbs and a giant gold ribbon will not find better treatments or cures for the difficult cancers that kill so many children. It will not force Harold Varmus, M.D., to change his funding allocations. And, it may not cause more people to donate money toward childhood cancer research. All may be true. What that handful of lightbulbs and fabric may do is provide an additional measure of hope. And never should we forget that hope is a dangerous commodity, especially to a community that sometimes finds itself without any. Thanks for nothing, Mr. President.