Politicizing pediatric research ?>

Politicizing pediatric research

A seemingly innocuous new bill, the Gabriella Miller Kids First Research Act (H.R. 2019) sponsored by Rep. Gregg Harper, R-Va., is up for a vote in the U.S. House today and it is causing quite a stir. The bill is named in honor of Gabriella Miller, a ten year old that recently passed away from brain cancer and advocated strongly for increased funding for pediatric cancer research, and it would allow $12.5 million to be authorized to the National Institutes of Health to fund pediatric-cancer-specific research grants.  However, the name of the bill represents only half of the purpose. The other part of the bill outlines where the money will be generated, which is from amending the tax code to divert finances used to fund presidential election campaigns. This puts Congress members in a difficult spot on deciding whether to fund politics or to fund research.

While Rep. Eric Cantor, R-Va., the House Majority leader, is supportive of the bill, others, mainly Democrats, are not willing to vote yes. The inclusion of politics into a research bill diminishes the value of supporting medical research. Additionally, authorizing funds does not necessarily mean they will be appropriated for the intended purpose. Furthermore, the small amount of funds authorized in this bill does not make up for the large budget cuts that hurt all avenues of scientific research.

While the ASBMB is pleased that funding for scientific research is being highlighted by members of Congress, the society does not support the bill. The ASBMB would prefer to let scientists determine the best course of action with their research and to win grants based on exemplary, peer-reviewed applications, rather than have Congress dictate which research is important. A better approach supported by the society is to agree upon a budget that eliminates sequestration and ensures predictability and credibility in order for all scientists to continue to make groundbreaking discoveries that leads to cures for many diseases, not just pediatric cancers.

Follow the Policy Blotter to read about more of the latest science-related legislation.

UPDATE: The U.S. House passed the Gabriella Miller First Research Act with 295 Yeas and 103 Nays.

2 thoughts on “Politicizing pediatric research

  1. I politely disagree with your belief that Congress shouldn’t be able to (at least somewhat) dictate how money is spent on research, though I do agree with you that all facets of research should be highlighted and not just one.

    This bill is made important not by it’s contents, but rather by the conversation it is stimulating in the political and public spheres. Pediatric cancer is notoriously underfunded; the amount of research granted by the NCI to all of pediatric cancers combined total only $197 million per year, or about 4%. That money is split up among dozens of cancers in the brain and nervous system, bones, blood, liver, kidneys, and everywhere else you can thing. The scientists who wish to pursue research into pediatric cancers often find themselves without the resources to do so, denied by both the NCI and corporate sources who can’t be bothered too much with such a small consumer population as a few hundred kids per disease each year. Kids are not cost effective.

    Meanwhile, breast cancer is given $631.2 million, followed by prostate ($300.5 million), lung ($281.9 million) and colorectal ($270.4 million). It would be nice to believe that pediatric cancer will be cured by some trickle-down method of research, but the top four are so rarely found in children that it is almost non-existent. Additionally, the disease found in kids are biologically divergent from the adult versions of the same cancer. Targeted treatments that genomics enables will be able to close that gap somewhat, but toxicity will still be a serious issue for years to come.

    1 in 5 kids will die of cancer within the first 5 years. Those statistics hide the kids who relapse and die after 5 years, the kids who die of toxicity during, or even years after, treatment, the kids that die of illness due to no immune system during treatment. You would be amazed what I have heard parents find listed as the ’cause of death’ when they receive their child’s death certificate. That four-year battle with a brain tumor? Killed by pneumonia that couldn’t be fought off due to myleoablative chemo. Or radiation necrosis. Or toxicity induced heart failure.

    So while this bill isn’t particularly important in the scheme of funding, please consider that the NCI, which is effectively the government directing how research grants are divided, has consistently refused to direct it towards studies in children. Perhaps this will change that,.

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