THE BLOG
10/03/2013 08:44 am ET | Updated Jan 23, 2014

What If It Was Your Child, Senator Reid?

To be fair, I do not hold the opinion that Senator Harry Reid has any ideological issues with children fighting cancer. Despite his significant gaffe on Wednesday October 2, where he made a truly senseless statement about helping out children with cancer during the government shutdown, I do not personally think that Mr. Reid is against fighting childhood cancer. Mr. Reid's comments, I believe, were in response to the manner in which the current negotiations are being addressed. That is when he inserted his foot into his mouth without a second thought. Not only did Senator Reid highlight the embarrassing nature of the impasse with his statement, but more importantly he once again demonstrated how little regard our federal government has for children with cancer. That is my problem with Senator Reid's remarks. That is my problem with this entire political game of chicken. The dangerous game that is being played in Washington is impacting hundreds of thousands of Americans. It is time that the men and women elected to run this country, and the man sitting in the White House, act like the leaders we believed them to be when we voted for them.

Imagine for a second that your child has cancer, the number one disease killer of kids in this country. The National Institutes of Health is one of the institutions that develops and implements many of the clinical trials that children with cancer depend upon. Imagine further that your child was just about to begin a clinical trial for a treatment that only has an open slot at NIH in Bethesda. Then comes the government shutdown courtesy of John Boehner, Harry Reid and all the other members of Congress. Now, your child can no longer begin treatment at NIH and you as a parent are left scrambling to find another open slot somewhere else or another trial or treatment altogether. This does not even address the biggest variable at this point, whether the family can even afford to travel to another institution even if they have an open slot. What Congress fails to understand is that they are actively playing with and impacting real people's lives. They are putting lives at risk all for politics. And face it, each party is responsible. There is true culpability on both sides of the aisle and the middle. As we sit back and watch this embarrassing scene unfold, we truly are powerless at this point to alter the course of this tragedy. I suppose we have the opportunity to cast votes against each member of congress in future elections; however that does not help the parent at this very moment who is desperately trying to save their child.

The tragedy of this entire ordeal was highlighted by Francis Collins, MD, the head of NIH, who detailed the fallout from this morose game of chess. I do not always see eye to eye with Dr. Collins with respect to the overall funding allocations for childhood cancer at NIH and NCI, but I will say that his words are chilling. I am a parent who lost a child to cancer. In January 2011 my beautiful daughter Alexis died of DIPG. DIPG is an inoperable brain tumor with no known cure. Hope for parents of children with DIPG comes from institutions such as NIH. It was at NIH that we received treatment from one of the most amazing physicians in the world who displayed a sense of knowledge and compassion beyond any other person I have ever met. During Alexis' 33-month fight, she was on no fewer than five different clinical trials including the one at NIH. We did everything in our power to find the magic silver bullet. Unfortunately, Alexis' story was not written with a happy ending despite the amazing efforts by every doctor who treated her.

Consequently, when I witness this disgusting show from the Hill unfolding, and I then hear Senator Reid's careless and insensitive comments, I can only imagine how parents of children with cancer are feeling right now. The abject sense of helplessness and lack of hope is palpable. And that frankly breaks my heart and disgusts me at the same time. We should be arming parents of children with life-threatening diseases with every weapon possible instead of pulling hope right from their hands. Yet, that is just what people like Harry Reid and John Boehner are doing right now. They are playing a game that involves real people, people who pay their salaries, people who cast votes for them, people who work hard and simply want to live a decent life. They are playing a game with parents who are fighting against the odds, fighting to save a child, the greatest single commodity that the family has. Having a child with cancer is not fair. Maybe that goes without saying. Having a group of so-called leaders playing with that child's life is perhaps even less fair. May I go so far as saying it borders upon criminal. I can say one thing for certain though. If it was Senator Reid's child or grandchild, or Congressman Boehner's child, neither would ever make a comment like that made by Senator Reid. They would understand why it would be important to help even one child with cancer. Mr. Reid, if Alexis were still here, I can tell you, it would matter to us. It matters to every parent with a child with cancer. We should as a nation and society care about even one single child.

I am ashamed at the actions of those we have elected. It is a privilege to serve. It is an honor to be elected. And it is a responsibility that must be discharged in such a manner that it does not hurt the citizens of the nation you are sent to serve. Once again, we have seen the regard with which children diagnosed with cancer in this country are treated. What if it was your child, Senator Reid? What if.