Advocacy News

NASPGHAN Backs New Indirect Research Cost Model

NASPGHAN, alongside nearly 300 organizations, is asking Congress to support a new model for ensuring that institutions’ essential scientific research costs are adequately supported. The groups are hoping Congress will embrace the work of the Joint Associations Group on Indirect Costs (JAG) and will stop the Office of Management and Budget from instituting arbitrary caps on “indirect costs” or “facilities and administration” (F&A) support for National Institutes of Health (NIH) grants.

On Feb. 7, 2025, the Trump Administration announced it would dramatically cut NIH grants by capping the rate grants pay for “indirect funding” at 15 percent. The abrupt change was opposed by NASPGHAN and others in the medical community. Litigation halted implementation of the policy, although the federal government has appealed the case.

The new model put forward by the JAG  — the Financial Accountability in Research (FAIR) Model — centers on improved transparency and better alignment of indirect cost reimbursement with specific research project needs. The way indirect costs are spread across research at an institution has been targeted by critics who say it allows institutions to evade accountability on how federal dollars are spent.

NASPGHAN Letter to Sens. Cassidy and VanHollen Endorsing the Cure Hepatitis C Act (S. 1941) 

July 28, 2025

NASPGHAN has endorsed the bipartisan Cure Hepatitis C Act (S. 1941), introduced by Sens. Bill Cassidy, MD (R-LA) and Chris Van Hollen (D-MD), that establishes a national program within the U.S. Department of Health and Human Services (HHS) to eliminate hepatitis C (HCV).

The legislation calls upon the Secretary of Health and Human Services to create a national strategy and implementation plan for the elimination of HCV in the United States, which includes the formation of an advisory committee comprised of clinicians, state and local public health officials, patients and other key stakeholders.

The bill creates an innovative purchasing model that authorizes the Secretary of HHS to enter agreements with drug manufacturers for the purchase of hepatitis C treatments. Drugs purchased under those agreements would be provided to registered pharmacies and other dispensing sites and made available to covered populations, including children enrolled in the Children’s Health Insurance Programs (CHIP), without cost-sharing.

The bill also authorizes funding for activities such as outreach to covered populations and screening for HCV.

In its letter, NASPGHAN wrote that early treatment for HCV in children is effective and cost-saving, and that the bill “ensures equitable and uninterrupted access to life-saving therapies during critical windows of early childhood.”

Thank you to Amal Aqul, MD, chair of the NASPGHAN Hepatology Committee, for her valuable contributions to NASPGHAN’s endorsement letter.

Take action now by asking your senator to cosponsor the legislation.

NASPGHAN Responds to FDA RFI on Infant Formula

NASPGHAN has provided extensive input to a request for information from the Food and Drug Administration (FDA) as the agency begins its review of the nutrient content in infant formula. There has not been a comprehensive assessment of nutrient requirements for infant formula since 1998.

In its September 10 letter, NASPGHAN encouraged harmonization between U.S. and European infant formula nutritional standards, including through U.S. adoption of a staged approach that requires different formula nutrient levels at different ages. NASPGHAN suggested the FDA consider a joint panel of European and North American pediatric nutrition experts to provide scientific input to the European Food Safety Authority and to the FDA to accomplish better alignment.

NASPGHAN also provided input on individual formula nutrients and key ingredients, including iron, protein, fats, DHA and ARA, and sources of carbohydrates.

In the letter, NASPGHAN urged the FDA to reinforce with the American public that infant formulas currently marketed in the United States are safe and asked the FDA to also review and update guidance on infant formula labeling and marketing.

In related news, NASPGHAN also recently commented on a draft Agency for Healthcare Research and Quality (AHRQ) comparative effectiveness review: Dietary Total Fat Intake and Dietary Polyunsaturated Fatty Acid (PUFA) Intake and Child Growth and Development Outcomes. In its letter, NASPGHAN underscored, as significant limitations of the AHRQ systematic review, the exclusion of relevant studies and the variability of study methodologies, as well as the lack of focused findings on important subgroups (e.g., preterm infants, individuals with chronic disease, overweight/obesity).

Step Therapy Legislation Reintroduced in Congress

The Safe Step Act  (S. 2903 / H.R. 5509) has been reintroduced in Congress and lawmakers need to hear from you, their constituents, about why their co-sponsorship support of the bill is needed. The legislation would create a clear, timely and transparent process for a patient or physician to request an exception to step therapy protocols in certain situations, including when a patient is already stable on the prescription drug selected by his or her provider. Contact your members of Congress through the NASPGHAN Action Center. It only takes a few minutes to send an email to your lawmakers using a template letter created for you by NASPGHAN. Take Action Now.