The American Society of Pediatric Nephrology (ASPN) is deeply alarmed by the recently announced reorganization of the Department of Health and Human Services (HHS), which slashes the agency’s workforce by 25% and consolidates the agency’s 25 divisions into just 12. Despite Secretary Robert F. Kennedy, Jr.’s assurances, abrupt reductions in force and spending cuts are likely to affect HHS’ ability to advance biomedical research, sustain the nation’s public health infrastructure and deliver high-quality care to millions of Americans. Even more concerning, this sweeping reorganization was implemented without consultation with Congress – the body responsible for authorizing and funding HHS agencies – or with the stakeholders who depend on and collaborate with these agencies.
While ASPN awaits more details on what this reorganization will mean in practice, of particular concern is the elimination of the Health Resources and Services Administration (HRSA) and its consolidation as part of the new Administration for a Healthy America, as well as the loss of 1,200 additional jobs at the National Institutes of Health (NIH). We call on the administration to ensure there is an appropriate staffing level with the expertise and experience to carry out HHS’ mission and to reinstate legally appropriated funding for HHS agencies.
HRSA’s mission is to improve health outcomes and access to quality services, maintain a skilled health workforce, and deliver innovative, high-value programs. For the practice of pediatric nephrology, HRSA’s Division of Transplantation supports the Organ Procurement and Transplantation Network (OPTN), which links all professionals involved in the United States organ donation and transplant system. Additionally, the agency administers the Pediatric Subspecialty Loan Repayment Program (PSLRP), which supports loan repayment for physicians practicing pediatric nephrology and other pediatric subspecialities. A robust workforce of pediatric kidney specialists is critical for ensuring that the thousands of US children with chronic kidney disease (CKD) receive the best possible care.
For children with end-stage kidney disease (ESKD), dialysis is required as a life-sustaining treatment and serves as a bridge to kidney transplantation. In contrast to adults with ESKD, nearly all children with ESKD are transplant-eligible and the benefits of transplant (vs dialysis) to growth, development and meaningful long-term health outcomes are well-recognized and prioritized by pediatric nephrologists through early and timely transplant referral. Given the limited lifespan of living and deceased donor kidneys, most children undergo multiple kidney transplants in their lifetime. Consequently, selection of high-quality, low-risk compatible organs with high probability of long-term success is paramount when allocating organs to children. The HRSA Division of Transplantation and OPTN play a vital role in the functioning of the country’s transplant system and ensuring that there are appropriate standards for the safety and effectiveness of organ transplantation for children and adults. Efforts to strengthen the accountability and transparency of the transplant system have the potential to improve the health of this vulnerable patient population. Cuts to HRSA, particularly to the Division of Transplantation overseeing the current modernization of OPTN, will undermine the country’s transplant system and its ability to meet the unique health needs of children, and must be prevented.
Children with CKD require access to specialized care. Childhood kidney disease has an impact on many other organ systems, including the heart, the brain and the bones. Children with CKD need special diets and formulas to grow. Unlike adult kidney disease, which is typically related to hypertension or diabetes, the reasons for childhood kidney disease are often related to congenital or hereditary conditions or issues related to the immune system. Many childhood kidney diseases are rare. Thus, children with kidney disease require pediatricians trained specifically in nephrology to diagnose, manage and treat their unique diseases and complications. There is a shortage of pediatric nephrologists specially trained to treat children with kidney disease. The American Board of Pediatrics’ data indicate that, in 2022, two states had no pediatric nephrologists, and a significant number of states have fewer than one pediatric nephrologist for every 100,000 children.[1] Recruitment into the specialty is a problem. Between 2016 and 2018, only 53% of pediatric nephrology fellowship openings were filled in the U.S. National Resident Matching Program (NRMP). Congress authorized and appropriated funds for the PSLRP to promote workforce recruitment into pediatric subspecialties including nephrology to ensure that children, including those with chronic kidney disease, have access to the specialized, knowledgeable experts they need to keep them healthy and safe. Without federal investment in the pediatric subspecialty workforce, children with kidney disease will continue to face long wait times for care, need to travel long distances to receive care, or go without care altogether, putting them at risk for a myriad of health complications and premature death. To date, there has been no information about the fate of either the Division of Transplantation or the PSLRP.
While the NIH will remain an independent agency under the HHS reorganization, ASPN is deeply concerned about the staffing cuts and grant rescissions. Eliminating the Pediatric Scientist Development Program, which supports the next generation of investigators in pediatrics, pediatric nephrology, and other pediatric subspecialties, will hamstring the country’s ability to develop interventions and cures for the rare and chronic conditions affecting our children. The elimination of this program is particularly devastating for pediatric nephrology since the causes of kidney disease in children and the interventions that may be required differ from the adult population. Without a robust research workforce and investment in this area, we are jeopardizing the health of these children, and reducing the likelihood that they will survive and thrive as productive adult Americans.
Consolidation and cuts to these important health programs will not make America healthy again or improve HHS’ efficiency. They will only jeopardize the health of children with chronic kidney disease and other children living with acute and chronic conditions. ASPN calls on the administration and Secretary Kennedy to reverse these harmful cuts immediately.
[1]https://www.abp.org/dashboards/pediatric-subspecialty-us-state-and-county-maps
