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Some pediatric research areas, such as congenital birth defects and HIV/AIDS, were disproportionately overfunded by the NIH in recent years relative to their disease burden in the U.S., according to a cross-sectional study.

NIH funding for disease-specific research largely appeared to correlate with pediatric disability-adjusted life years (DALYs) lost to that disease in the U.S. from 2015-2018. However, notable exceptions included the two areas of congenital birth defects and endocrine, metabolic, blood, and immune disorders, both overfunded by over $1 billion.

In addition, HIV/AIDS research was overfunded by over $500 million, researchers led by Chris Rees, MD, MPH, of Boston Children's Hospital and Harvard Medical School reported in a study published in .

"Our findings highlight the need for the NIH and other funding organizations to consider various metrics of disease burden in the allocation of research funds, including consideration of specific measures that may be most appropriate in the assessment of pediatric disease," the researchers wrote.

They noted that five disease categories, including headaches, dermatitis, and trauma-related injuries, were underfunded by at least $50 million when compared to their predicted funding based on DALYs. Twenty-seven categories received no funding at all.

"It is concerning that several of the most underfunded conditions -- drownings, falls, sudden infant death syndrome (SIDS), and dietary iron deficiency -- are conditions with some of the greatest racial/ethnic disparities in outcomes, including mortality," Glenn Flores, MD, of University of Miami, who was not involved with the research, commented in an email to MedPage Today.

CDC reports that SIDS, which was underfunded by over $25 million according to Rees' group, is the fourth leading cause of death in infants and is twice as likely to occur in .

The present study is one of the first to compare pediatric research areas and disease burden in the U.S. when childhood health research still amounts to just 10% of the entire NIH budget, according to Thomas Boat, MD, and Jeffrey Whitsett, MD, both of University of Cincinnati College of Medicine and Cincinnati Children's Hospital Medical Center.

"Raising the level of research qualitatively and quantitatively is a high-priority goal for the entire pediatric community. The pediatric community can also take the lead in crafting messages that convince the public, as well as funders, of the value of pediatric research for the future health of all," Boat and Whitsett wrote in an .

They acknowledged that NIH funding for child health is currently concentrated to a few institutions, citing one estimate that 30% of NIH's $1.96 billion pediatric funding went to three children's hospitals and 57% to the top ten NIH grant recipients in 2020.

Boat and Whitsett noted that many pediatric training programs in freestanding pediatric hospitals "lack opportunity for frequent interactions with basic and quantitative scientists."

"Pediatric programs embedded within university settings are advantaged by relative ease of interaction with diverse scientific faculty and trainees, but often suffer from insufficient research resources," the editorialists added. "Likewise, the frequent isolation of pediatric personnel in children's hospitals limits opportunities to share their clinical experience with the broader scientific community."

"It is incumbent on leadership of pediatric departments, children's hospitals, and pediatric training programs to prioritize research program planning and implementation, including the highest possible level of advice, encouragement, and support for trainees to engage in research that will lead to independently funded careers," Boat and Whitsett urged.

For their study, Rees and colleagues relied on the NIH Research, Condition, and Disease Categories (RCDC) system to identify pediatric grants and their corresponding spending. The 2015-2018 study period was selected to capture the first year the NIH added a pediatric category to the RCDC system.

Grants that were not disease specific, not U.S.-based, or studied precursors to adult health were excluded from the study. Grants that pertained to more than one disease were split equally between the relevant categories.

The investigators analyzed 14,060 NIH grants for 157 disease categories after excluding 11 categories that were not relevant to pediatric studies (e.g., dementia).

Interestingly, the most underfunded pediatric conditions relative to hospitalization metrics, not DALYs, were appendicitis, maternal disorders among adolescents, and respiratory diseases.

Researchers conceded that the disease categories used "did not necessarily provide the granularity needed to fully understand funding for individual conditions." In addition, the study only covered NIH funding and did not examine private funding sources, they acknowledged.

"While the NIH allocations in general and those related to disease burden metrics provide initial insight into gaps between research funding and pediatric disease, there are pleiotropic factors that influence the garnering of research support," Boat and Whitsett noted. "These include the number of pediatric investigators, the strength of training pipelines for pediatric scientists, and the priorities of many children's hospitals that invest preferentially in clinical programs."

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