New law highlights need for pediatric research funding

gabbi“Stop talking and start doing.”

The 10-year-old Virginia girl who spoke these words to lawmakers helped increase funding for pediatric research this year with the passing of a new law, and Seattle Children’s Research Institute is celebrating the news.

“Pediatrics gets a very small share of the National Institutes of Health budget, certainly not proportional to the number of children in the United States,” says Jim Hendricks, PhD, president of Seattle Children’s Research Institute. “Any dollars that make their way to pediatric research may help our patients and other children around the world.”

A little girl makes a difference

Fifth grader Gabriella Miller became a widely celebrated childhood cancer activist during her 11 month battle with brain cancer. In the weeks before her death on Oct. 26, she urged lawmakers to increase support of pediatric research.

“We need action,” she said during an interview for a cancer awareness documentary.

Miller’s demand paid off on April 3 when the president signed the Gabriella Miller Kids First Research Act into law. The bipartisan bill diverted $126 million from national political conventions to the National Institutes of Health (NIH) for pediatric research.

A long ways to go

While Seattle Children’s Research Institute supported the legislation as part of the Pediatric Research Consortia, Hendricks says we’ve still got a long ways to go as government funding for pediatric research continues to decrease.

The federal budget sequestration in 2013 removed $1.5 billion from the NIH, and biomedical research inflation eats away at the remaining funding each year. As a result, research grants are continuously getting smaller and there are fewer of them.

In this challenging economic climate, it is especially difficult for researchers studying less common pediatric conditions to secure funding. Only half of a cent of every healthcare dollar is currently spent on pediatric research.

“I’m worried that if it’s harder for scientists to get funding then it’s going to be harder to convince bright men and women to go into a scientific profession,” Hendricks says. “And we want the best and brightest taking care of our kids.”

While the Pacific Northwest community has been incredibly generous in its support of Seattle Children’s, Hendricks worries private donations won’t be enough to make up for shrinking government dollars.

“At Seattle Children’s, research is core in our quest to find answers to the diseases and health issues that afflict

children,” he says. “Philanthropic support – along with a substantial investment from the government – is vital in ensuring we can move the needle in treating and finding cures for pediatric disease and conditions.”

Working together

To get the most benefit from existing research funding, Seattle Children’s Research Institute dedicated years of support to the National Pediatric Research Network Act, which was signed into law in November 2013. The law will create networks of children’s research institutions working together to answer specific research questions. This method should make it easier for researchers to enroll study participants in clinical trials for rare conditions.

“When asking the National Institutes of Health for funding, we want to get the biggest bang for our buck and make a difference for kids whose lives depend on this research,” Hendricks says.

You can support the Seattle Children’s Research Institute directly as a Research Champion or by writing to your local congress person and asking them to invest in research.

If you are a member of the media who would like to speak with Dr. Jim Hendricks please contact Seattle Children’s PR team at 206-987-4500 or [email protected].