Co-Chairs:

Ilene Fennoy, MD and Ambika Ashraf, MD

Mission Statement:

Our mission is to affirm the ideology of the PES as a scientific community that fosters inclusion, acceptance, and support for every person independent of race, ethnicity, gender, sexual orientation, or religion. Towards this end, our focus is to:

  1. Recognize implicit and explicit bias in healthcare in Pediatric Endocrinology, and address related healthcare disparities that affect our patients and families, through research, quality improvement, health delivery science, education, and outreach efforts.
  2. Foster equity and diversity and provide an environment of equality and mentorship for all trainees, fellows, and faculty in Pediatric Endocrinology.

Goals:

Our task force goals for the coming year are to increase awareness in our society’s membership of implicit and explicit bias in medicine in general and Pediatric Endocrinology specifically, and the contribution of said biases to health care disparities as well as to career development of minority physicians. We also aim to start to amass resources to help us address and ameliorate these biases and resulting disparities. We will contribute regularly to the newsletter, develop a needs assessment survey of our society, and will plan to offer periodic education for the PES membership.

Inheriting Risk and Responsibility, A Call for Equitable Family-Centered Care

Mary Margaret Barr MD, University of Alabama at Birmingham

As we approach Thanksgiving – a time when families gather and stories are shared – we're reminded that family history is not only made of our family stories but our family health conditions too. This month, in recognition of National Family Health History Day (November 25), we spotlight a case that underscores the importance of understanding inherited risk and ensuring access to appropriate care, regardless of insurance status or socioeconomic background.

A Case That Reveals the Gaps

We recently cared for a 12-year-old patient who presented with extensive xanthomas that have been present since age 2. Initially misdiagnosed as warts, the lesions were a sign of homozygous familial hypercholesterolemia (HoFH) – a rare but life-threatening genetic lipid disorder characterized by severely elevated LDL and accelerated cardiovascular disease.

Clinical and Systemic Challenges

Delayed Recognition Due to Diagnostic Bias
Xanthomas are a hallmark of HoFH, yet the patient’s skin findings were, per family’s report, misdiagnosed for years (family had recently moved to the US, and we did not have access to early childhood medical records). This delay illustrates how knowledge gaps and bias in visual diagnosis can lead to missed or late diagnoses. It is likely that limited access to healthcare due to insurance status prevented a timely diagnosis for this family.

Suboptimal Treatment Access

Once the diagnosis was established, with xanthomas and an LDL level exceeding 600 mg/dL, therapy was initiated: high-intensity statin, ezetimibe, and colesevelam. The next intensification is to imitate weekly LDL apheresis, which family could not afford to come from their home. Through a patient-assistance program, we secured evinacumab, which reduced LDL from >600 to ~180 mg/dL. Yet, this level remains far above the LDL goal of <115 mg/dL, sustaining cardiovascular risk. Even patients with HoFH and minimal LDL receptor function can sometimes benefit from an additional 10–25% LDL reduction, every incremental decrease matters. Unfortunately, due to insurance limitations, the family could not afford a PCSK9 inhibitor out of pocket.

Genetics and Equity

HoFH is inherited, whether from two copies of mutations on the same locus or compounding mutations (named Compound Heterozygous Familial Hypercholesterolemia which is phenotypically indistinguishable from HoFH). Without equitable access to screening and treatment, the entire family, including a newborn sibling, may be at risk. National Family Health History Day encourages all clinicians to ask about inherited conditions—but we must also ensure that families can act on that knowledge, regardless of insurance coverage or language barriers.

Clinical and Advocacy Takeaways

When evaluating children with severe dyslipidemia, consider the broader family. Cascade screening can identify affected siblings, parents, and relatives—but only if systems are in place to support access to affordable genetic testing and follow-up care.

Recognize the Cost of Access Gaps

For rare disorders like HoFH, newer biologic therapies are not luxury add-ons—they are essential. Denial of access based on cost or insurance status is a structural health disparity with long-term, life-altering consequences.

Thanksgiving as an Opportunity

As families come together this season, clinicians can empower patients to learn and share their health histories. Encourage open conversations around cholesterol, heart disease, and early symptoms—and offer resources to help families act on that knowledge.

A Call to Action

The PES Health Systems Disparities Initiative is committed to identifying and addressing the inequities that affect our patients every day. This case reminds us that the burden of genetic disease doesn’t fall equally—and neither does access to the care that can change outcomes.

This November, let’s reflect not only on what runs in our families, but also on what runs through our health systems—both the gaps and the opportunities. Together, we can build a more inclusive, informed, and equitable future for all families living with endocrine and metabolic disorders.

Wishing you all a meaningful Thanksgiving season!

Archive - Monthly notable dates/events

March 28, 2024: State of the Art: EDI

Title: Disparities in Diabetes Technology: An Evidence-based Roadmap to Equity

Description:

In this webinar, we will discuss multi-factorial drivers of disparities in pediatric type 1 diabetes with a specific focus on the role of diabetes technology utilization. We will cover evidence-based solutions to address disparities relevant to clinicians and researchers alike. We will also discuss emerging technology disparities and system-level solutions to mitigate new disparities.

Learning Objectives

  1. Recognize diabetes technology as a modifiable risk factor in type 1 diabetes and identify populations at risk of inequitable diabetes care.
  2. Illustrate how diabetes technology is underutilized in minoritized populations and is subject to inequity.
  3. Recognize ways to identify and mitigate inequities in diabetes technology use.

Speaker: Ananta Addala, DO, MPH, Assistant Professor of Pediatrics at Stanford University

View Recording

 

Podcast Club

The Immortal Life of Henrietta Lacks

Tuesday, October 14, 2025, 8:00pm Eastern time

We’re excited to announce that we will be discussing The Immortal Life of Henrietta Lacks and its related podcast.

The Immortal Life of Henrietta Lacks

Join us for robust discussion: https://zoom.us/meeting/register/fyPzlN_JSh-h1ydgUzTuaw

The Immortal Life of Henrietta Lacks

How one woman, without her knowing, may have saved us all.

 

 

 

 

Additional EDI Resources of Interest

PES Addressing Health Disparities Research Grant

Each year we solicit applications for the Addressing Health Disparities Research Grant. The Purpose of this grant is to support the development of research and education in equity, diversity and inclusion involving pediatric endocrinology that will enhance pediatric endocrinologists’ ability to understand the needs of their patients and colleagues and deliver more equitable and inclusive education and services to a diverse population of trainees, colleagues, and patients. The current open call will close December 16, 2024!

Click here for more information

PES Cookbook Initiative

On behalf of The Health Systems Disparity Committee Committee of The Pediatric Endocrine Society, we are very pleased to inform the PES membership of a new initiative: The “PES Community Cooking Initiative.”

Each day is a new opportunity for us to eat healthily. We are creating a PES Cultural Cookbook, a collection of culturally diverse recipes. Please share your favorite recipes here https://pedsendo.org/pes-cooking-initiative/ it can vary from a family recipe from your ancestors or one you have invented yourself.  We believe this initiative will help us understand our history, diversity, interactions, cultures, and traditions.  Please include carbohydrate counting information with your recipe.

Click here for recipes.

GET INVOLVED!

Email Info@pedsendo.org if you are interested in getting involved!