Only 9 childhood diseases get more than half of NIH funding for research, study shows: 'There's a real imbalance'

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The ongoing COVID-19 vaccine trials in children has showed research in adults cannot be directly translated to kids, and the concept applies to other conditions and treatments in the pediatric field.

“If there's one thing that the pediatricians banged into my head, it’s that children are not little adults,” Food and Drug Administration’s Dr. Peter Marks told USA TODAY last week.

That’s why health experts are calling for more funding of pediatric diseases, especially after a study found the money going toward these conditions may not be allocated appropriately.

Researchers looked at pediatric funding from the National Institutes of Health from 2015 to 2018 and found only nine out of 157 diseases received more than 55% of total funding, according to the study published Monday in JAMA Pediatrics.

Children make up about 20% of the nation's population, but pediatric diseases make up about 10% of the overall NIH budget. It’s important to make sure “that funding is targeting the areas of greatest need,” said study author Dr. Florence Bourgeois, pediatrician at Boston Children’s hospital and associate professor of pediatrics at Harvard Medical School.

“There’s a real imbalance,” said “The study highlighted a number of conditions that during the study period didn’t receive any NIH funding at all, and others that received some but less than we expected, while other received a lot more compared to the burden of disease they represented.”

In a statement sent to USA TODAY, NIH criticized how the study calculated pediatric disease burden in the U.S. because it was “weighted heavily toward hospital costs, which may underestimate disease burden,” and can “overlook research on different conditions (that) very often overlaps.”

The agency also noted the study was limited to the U.S., which may fail to recognize the potential benefit current research may have on the rest of the world.

“As the current pandemic has shown, many diseases and conditions do not respect U.S. borders,” NIH said. “We will evaluate (the study) very carefully and will consider insights gleaned from it in our future deliberations.”

The study found the pediatric diseases most overfunded by NIH included congenital birth defects, endocrine, metabolic, blood and immune disorders, HIV/AIDS, autism spectrum disorders, diabetes, neonatal disorders, drug use disorders, other mental disorders, and leukemia.

“HIV has become a very unusual disease in children because we diagnose the condition in pregnancy and suppress the virus in pregnant women,” said Dr. Terence Dermody, physician-in-chief and scientific director at UPMC Children’s Hospital of Pittsburg. “It really diminishes the risk of the pregnant women transmitting.”

There are approximately 8,500 HIV-positive pregnancies in the U.S. each year and fewer than 150 new infant HIV infections, according to the Elizabeth Glaser Pediatric AIDS Foundation. However, the report found HIV/AIDS received nearly $210 million, whereas some cancers received less than $40,000.

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Other pediatric conditions most underfunded relative to disease burden included headache disorders, dermatitis, road injuries, conduct disorder, viral skin diseases, low back pain, acne vulgaris, psoriasis and upper respiratory infections.

“The way the lung responds to injury, whether it’s an infectious injury or an environmental one, all of these areas could merit more support because of their prevalence and impact later in life,” Dermody said.

Although NIH recognizes the importance of funding separate research for adult and pediatric diseases, Bourgeois says, the agency allocates grants for children the same way it does for adults.

“The way we think of disease burden should be different in adults than kids,” she said. “NIH puts a lot of emphasis on mortality, but kids typically don’t experience mortality. It’s more the chronic impact of conditions over time.”

While researchers may disagree about which disease merits a bigger share of the pie, they all agree pediatric research overall should receive more funding as it benefits both children and adults.

“We’re seeing an erosion in the number of pediatricians who focus on research as the primary component of their professional mission,” Dermody said. “Kids are our future and so many maladies that afflict adults start in childhood or adolescence.

Follow Adrianna Rodriguez on Twitter: @AdriannaUSAT.

Health and patient safety coverage at USA TODAY is made possible in part by a grant from the Masimo Foundation for Ethics, Innovation and Competition in Healthcare. The Masimo Foundation does not provide editorial input.

This article originally appeared on USA TODAY: NIH may be overspending, underspending on child diseases, study shows

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