THE BLOG
01/22/2013 10:04 am ET | Updated Mar 24, 2013

Open Letter to President Obama

Dear Mr. President:

Monday January 21, 2013 marks the day you took the oath of office for the second time. Many challenges now face you as you are sworn in for your second and final term as President of the United States. I do not envy the position you find yourself in at this difficult time. We face many financial struggles as a nation and the men and women on Capitol Hill certainly are not acting like the individuals who were tasked with solving the nation's ills. With that background in mind, I wanted to take this opportunity to bring to light an issue that I think deserves much more awareness and attention on the federal level. Childhood cancer. Childhood cancer is the number one disease killer of our children in this country. Were you aware of this fact?

As a parent, I know you recognize how precious your children are. Unfortunately, I lost my only daughter, Alexis Agin, to an inoperable brain tumor on January 14, 2011. She was given the prognosis of death upon diagnosis and outlived the grim timeline set for her by many months. The tumor Alexis had has no cure, and not a single advance in treatment has occurred in over thirty years. Children with this type of tumor are essentially made comfortable until they succumb. The same can be said for many forms of childhood brain tumors and other types of cancers as well. On the federal level, the funding disparity is significant. It is a travesty for that matter. It presents the message that childhood cancer is neither a priority nor a problem. Nothing could be farther from the reality of the disease.

I understand it is highly unlikely that there will be additional funding available for appropriation for specific childhood cancer research. That is not the purpose of this letter though. I have three specific "asks" that I would like to talk to you about that should not cost the federal government a penny.

First, you recently signed into law the Recalcitrant Cancer Research Act of 2012. This law requires the director of the National Cancer Institute, Harold Varmus, M.D., to initially designate two cancers as "recalcitrant," meaning they have a five year survival rate of twenty percent or less. It is a certainty at this point that both pancreatic and lung cancer will gain this initial designation; however, the director has the power and discretion to select additional cancers. DIPG would certainly fit within this definition and designation and should be made a research priority for the potential it holds to unlock information in general for childhood and adult brain tumors. Accordingly, I ask that your administration seeks to work with the director of NCI to designate DIPG as recalcitrant. It is truly troubling that not a single childhood cancer will probably be deemed recalcitrant at this time and gain additional focus on the federal level. Your administration can help to change that.

Secondly, there is a petition being circulated to light the White House gold for childhood cancer awareness month in September 2013. We all know when October rolls around and the world turns pink for breast cancer awareness month. Pink washes over almost everything in sight. You have already made proclamations designating September as Childhood Cancer Awareness Month, this would be one more symbolic gesture that raises awareness of the deadly toll of this disease on our country's children while honoring those who fought and fight. Given the lighting of the White House pink in October, this simple gesture should not be that difficult.

Third, there is no need to locate additional funding for federal research. The fix is simple, insist that the allocation of monies utilized by NIH and NCI for research be more equitably divided to ensure that all forms of childhood cancer obtain additional resources. For the past number of years, Dr. Varmus has kept federal funding for childhood cancer research through NCI at a fixed approximate four percent. This is simply unacceptable. The message that is being sent from NCI is that we are winning the war against childhood cancer. Given the grim statistics of such forms of brain cancer such as DIPG, I certainly take exception with this suggestion. It is time that we see a change in the overall federal funding structure for childhood cancer. For too long Dr. Varmus has ensured that childhood cancer research on the federal level remains stagnant. This is unacceptable.

I know there are a tremendous amount of pressing issues that face your administration as it begins its second term. This thought is not lost upon me. What I am asking for on behalf of the childhood cancer community is long overdue and should not ultimately take away from these other pressing issues. For those of us who have witnessed our child take their last breath, or been privy to a conversation with a doctor who said the words, "your child has cancer," there is little excuse for why this country is not pursuing childhood cancer with more vigor and focus. I live right outside of Washington, DC and work just a few short blocks from your residence. I could walk to your front door within a matter of five minutes. I would appreciate the opportunity to take a few short minutes of your time to have this discussion in person. For my daughter Alexis, for all the children and families around the country who have watched as their child was buried, and for those families tomorrow who will hear the same words we did back in April 2008, it is time that more is done. It is time that we value our children more and stop fighting childhood cancer in an antiquated manner with barbaric and outdated drugs. Please let us have this conversation and take the first small steps towards pursuing some of these issues that plague the childhood cancer community.

Thank you for your time and consideration.