10/03/2013 04:04 pm ET | Updated Jan 23, 2014

Government Shutdown, Childhood Cancer and the Question We Should Be Asking About NIH Funding

By now, you've heard about the government shutdown and how it is affecting all of our lives. Among the concerns: food safety, as several hundred FDA food inspectors have been furloughed; the closing of Head Start centers that provide meals, education and healthcare for children from low-income families; or the fact that 75 percent of the National Institutes of Health (NIH) staffers have been furloughed, putting a halt on funded research and clinical trials. For many in the cancer world, the NIH shutdown has caught our attention the most, as hundreds of patients (including children with cancer), who want to sign up for clinical trials, which may be a last resort, are unable to do so.

In the last few days, the media has focused largely on this fact -- childhood cancer patients will not have access to the clinical trials that may prolong or ideally save their lives. We feel this outrage is justified, and feel strongly that these clinical trials need to be carried out, but we cannot help but ask ourselves, with the NIH's funding of childhood cancer at less than five percent, isn't this outrage a bit late?

The fact is that the NIH funding needs to be reinstated immediately, even if it is in a piecemeal approach. However, why now, is the fact that childhood cancer patients may not be receiving the treatments they need to survive being brought into the limelight? It is something that should always be top of mind, and something we should all be concerned about. This is an important issue every single day, whether the government is shut down or not. Childhood cancer deserves more funding from the federal government, certainly more than the small percentage it is receiving during the shutdown, but also more than the small percentage that it receives yearly.

It is also worth noting that the NIH's funding for childhood cancer research continues to decrease annually, putting the promising projects of researchers in jeopardy. Alex's Lemonade Stand Foundation has responded by creating two grant categories, Bridge and Springboard Grants, specifically aimed at keeping these high impact research projects alive.

The bottom line is there are many reasons to be concerned about the government shutdown, certainly among them the NIH's clinical trials that can be potentially lifesaving. It is a welcome change that attention is being brought to the topic of federal funding for childhood cancer, but we can only hope that when the shutdown does end, that childhood cancer research not be forgotten. We know how important these clinical trials are, they gave Alex more time, and valuable time at that, to blaze a path and make a difference in the fight against childhood cancer. We can only hope that the national attention being brought to the NIH's funding of childhood cancer research will not only bring this issue into the public eye, but keep it there.

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