A Case for Independent Pediatric Patient Advocates
Introduction
Children are America’s most vulnerable population and, despite advancements in modern medicine and technology, they are facing more complex health challenges and are increasingly underserved. In the late 19th century, the field of pediatrics was founded with the intention of focusing on the whole child — considering both their physical health and overall well-being.
Today, pediatricians remain deeply committed to children's health. However, modern complexities, cultural shifts, and geographical disparities often make it difficult for physicians to address all the factors affecting a child’s well-being. Additionally, the evolving medical system has become increasingly difficult for parents to navigate.
Introducing an Independent Pediatric Patient Advocate into a family’s care team can improve a child’s medical outcomes, reduce the stress experienced by parents during medical events, and help minimize disruptions to daily family life.
Pediatricians as Advocates: Yesterday and Today
Dr. Abraham Jacobi, often called the "father of Pediatrics," founded the first free pediatric clinic in America in 1860. He was among the first to link a child’s environment to their likelihood of contracting disease, identifying the relationship between high infant mortality and the consumption of unpasteurized milk.
In the 1880s, Dr. Jacobi attempted to establish a pediatric section within the American Medical Association (AMA) but faced significant resistance. His approach — advocating for women’s and children’s rights — was seen as too radical at the time. As a result, the American Association of Pediatrics (AAP) was eventually formed in 1929, with a mission centered on ensuring a healthy and meaningful life for every child.
Pediatricians have historically succeeded in advocacy, helping expand access to preventive health care in the 1960s and pushing for the passage of the Child Health Insurance Reform Program in the 1980s. Today, pediatricians continue to advocate for issues such as:
Protecting families’ health coverage as Medicaid policies shift.
Promoting reforms to the Medicaid and Children's Health Insurance Program.
Strengthening the pediatric workforce and improving access to specialty care.
Supporting funding for nutrition programs like WIC.
Advancing gun violence prevention research and safety legislation.
Expanding pediatric mental health services.
American Children’s Health and Access to Healthcare in the 21st Century
Despite pediatricians' ongoing advocacy, American children's health needs have only become more complex over the past two decades.
Significant trends include:
A rise in childhood obesity (from 13.9% in 1999–2000 to 19.7% today).
Increases in anxiety (up 27%) and depression (up 24%) between 2016 and 2020.
Developmental disabilities affecting 17.8% of children (up from 16.2% in 2009).
Doubling of Type 2 Diabetes among children between 2001 and 2017.
Geographical disparities remain a major barrier. While Massachusetts leads the country with over 200 pediatricians per 100,000 children, 22 states have fewer than 100 pediatricians per 100,000 children. Some states, like Idaho and Wyoming, have fewer than 50.
Access to children's hospitals is similarly limited, with fewer than 300 such hospitals nationwide, often concentrated on the coasts. Families facing serious medical events must navigate insurance restrictions, travel logistics, and interruptions to work and daily life.
Families also contend with broader factors known as Social Determinants of Health (SDoH), including:
Housing and food security.
Safe transportation.
Exposure to racism, inequity, domestic violence, and substance abuse.
Introducing: Independent Pediatric Patient Advocates
The current medical system struggles to meet the needs of American children effectively. Independent Pediatric Patient Advocates can play a crucial role in improving outcomes and reducing the burden on families.
Patient advocates:
Help families navigate the complexities of the healthcare system.
Provide unbiased guidance, unrestricted by hospital networks or insurance plans.
Support coordination of care, including medication management, outpatient follow-ups, therapy services, and communication with schools.
Help maintain stability and minimize disruption to family life during medical events.
Advocacy at the systemic level is also critical.
While advocacy has long been part of pediatricians’ professional ethos, it has become increasingly challenging in today's polarized political climate. Pediatricians speaking out for children's health face threats and public backlash. Pediatric Patient Advocacy organizations, such as Save The Children, now often communicate on behalf of pediatric healthcare improvements and child health equity.
Independent Pediatric Patient Advocates can amplify children's voices in public policy while relieving pressure from pediatricians, allowing physicians to focus more fully on providing excellent clinical care.
Conclusion
Children’s healthcare in America is at a crossroads. A policy supporting the integration of Independent Pediatric Patient Advocates into children’s care teams — funded by insurance providers — would help lower barriers to care, ease the burden on families, and give pediatricians a strong advocacy partner.
This approach aligns with the National Association of Social Workers’ Code of Ethics, addressing the core values of service, social justice, and respect for human dignity. By expanding advocacy and support through patient advocates, we can help ensure that every child receives the quality healthcare they deserve.
References
Acosta, R. (2022, August 28). Children Need Independent Patient Advocates, Too. Retrieved August 11, 2024, from https://gnanow.org/blogs/children-need-independent-patient-advocates-too.html
American Academy of Pediatrics. (n.d.). Constitution and Bylaws, Preamble & Article IV.
Devakumar, D., Spencer, N., & Waterson, T. (2016). The role of advocacy in promoting better child health. BMJ Journal, 101(7), 596-599. https://doi.org/10.1136/archdischild-2015-308425
Masiakos, P. T., Jatana, K. R., Delmonte, M., Stanford, A., & Aldrink, J. H. (2019). Day-to-Day Advocacy by Pediatric Health Care Providers. Journal of Pediatric Surgery. https://doi.org/10.1016/j.jpedsurg.2019.03.026
National Academies of Sciences, Engineering, and Medicine. (2023). The Future Pediatric Subspecialty Physician Workforce: Meeting the Needs of Infants, Children, and Adolescents. Washington, DC: The National Academies Press. https://doi.org/10.17226/27207
Oberg, C. N. (1994). Pediatric Advocacy: Yesterday, Today, and Tomorrow. Pediatrics: Official Journal of the American Academy of Pediatrics. https://doi.org/10.1542/peds.94.5.669
Tayloe, D., MD, FAAP (2024). Advocacy and Child Health Outcomes: Do Child Health Professionals Realize Their Opportunities? Pediatrics in Review. https://doi.org/10.1542/pir.2023-006103
