All posts by Mary Jo Strobel

APFED and IES Announce Establishment of New Medical Codes for Eosinophil Diseases

For Immediate Release

APFED Contact: Mary Jo Strobel, Executive Director, (713) 493-7749,

IES Contact: Kate Filipiak, Executive Director, (414) 276-6445,

The American Partnership for Eosinophilic Disorders and the International Eosinophil Society Announce Establishment of New Medical Codes for Eosinophil Diseases

(Atlanta, GA; Milwaukee, WI) — The American Partnership for Eosinophilic Disorders (APFED) and the International Eosinophil Society, Inc. (IES) are pleased to announce that new ICD 10-CM codes for subsets of eosinophil-associated diseases have been approved, thanks to the joint efforts of both organizations.

For nearly three years, APFED and IES have worked ambitiously to propose unique and distinct ICD-10-CM codes for subsets of eosinophilic diseases. The ICD-10-CM coding system is the U.S. version of the international classification system that groups related diseases and procedures for the purpose of reporting statistical information. The codes were approved by the ICD-10 Coordination and Maintenance Committee (C&M) and will take effect on October 1, 2020. The ICD-10 C&M is a Federal interdepartmental committee comprised of representatives from the Centers for Medicare and Medicaid Services (CMS) and the Centers for Disease Control and Prevention’s (CDC) National Center for Health Statistics (NCHS).

NEW ICD-10-CM Codes for eosinophil-associated diseases:

  • Eosinophilic Asthma
  • Chronic Eosinophilic Pneumonia
  • Acute Eosinophilic Pneumonia
  • Lymphocytic Variant Hypereosinophilic Syndrome
  • Idiopathic Hypereosinophilic Syndrome
  • Other Hypereosinophilic Syndrome
  • Drug Reaction with Eosinophilia and Systemic Symptoms (DRESS)

“ICD codes are necessary for billing, insurance and medical records, and national statistics,” explained Kathleen Sable, a member of APFED Board of Directors who spearheaded the initiative on the organization’s behalf. “They are also extremely important to the patient community, because they enable researchers to better track these diseases and gauge prevalence and associated health care costs.”

Pursuing medical codes for eosinophil-associated disease is not a new venture for APFED. In 2008, the organization led successful efforts for the establishment of medical codes for eosinophilic gastrointestinal diseases, which greatly advanced research efforts and national health resource allocation in the U.S. for these diseases.

“It was an honor to work closely with the IES on this important initiative,” said Sable. “We are grateful for their expertise to help shape the justification for the codes, and their staunch commitment to advocacy.”

Dr. Paneez Khoury, an IES Board Member said, “This is a big win for health services research and an advance for patients with eosinophil associated disorders (EADs).” In 2018, a clinical working group of the IES identified the lack of codes for EADs as an unmet need for outcomes research. They subsequently highlighted the priority codes for adoption in the Journal of Leukocyte Biology(1).

“Broadening the spectrum of ICD codes related to these chronic debilitating conditions will further the understanding of their epidemiology, costs, and outcome,” said Dr. Florence Roufosse, President of the IES. “This is a key step towards improving management of EAD and patient care. The perseverance and advocacy of APFED was instrumental to making it happen!”

About the American Partnership for Eosinophilic Disorders (APFED)
The American Partnership for Eosinophilic Disorders (APFED) is a non-profit organization whose mission is to passionately embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases through education and awareness, research, support, and advocacy.

About the International Eosinophil Society, Inc. (IES)
The International Eosinophil Society (IES) is an organization of scientists and clinicians interested in the eosinophil. The Society was established to bring together scientists and medical experts from around the world who are engaged in research in the field of Eosinophil Biology and Eosinophil Disorders with a view to facilitating exchange of ideas and pursuing collaborative research projects dedicated to this inflammatory cell type and its role in diseases.


  1. Revisiting the NIH Taskforce on the Research needs of Eosinophil-Associated Diseases (RE-TREAD). Khoury P, et al. J Leukoc Biol 2018 Jul;104(1):69-83.

Share Your EGPA Perspectives

APFED is working in partnership with a Medscape, the largest provider of continuing medical education to develop an accredited activity to educate physicians about eosinophilic granulomatosis with polyangiitis (EGPA), formerly known as Churg-Strauss Syndrome. This educational program will also provide the learners with perspective of those who live with EGPA (or their caregivers).

We are currently seeking five people with EGPA (or their caregiver) to participate in a telephone interview with Medscape to capture their perspective to include in this program.

The person being interviewed will receive an honorarium for taking part in the interview.

Interviews will be conducted as soon as possible — please responded by February 28th.

To learn more and to complete a short questionnaire to indicate your interest, please visit this page:


Highlights from ACG 2019

This week, APFED was onsite at the American College of Gastroenterology’s 84th Annual Scientific Meeting and Postgraduate Course (ACG 2019) where attendees from around the world gathered to learn the latest scientific advances in gastrointestinal research and treatment of digestive diseases.

APFED had a table in the exhibit hall to offer clinicians professional resources to increase their understanding of the latest in diagnostics and treatments of these conditions, as well as educational material to share with their patients.

There were several exciting research posters presented throughout the meeting, including three in which APFED co-authored:

    • “Unmet Need for Additional Resources to Support Successful Transition of Care from Pediatric to Adult Providers for the Management of Eosinophilic Gastrointestinal Diseases,” presented by Gary Falk, MD, University of Pennsylvania
    • “Shared Decision Making in Eosinophilic Esophagitis Is Associated With Treatment Satisfaction but Is Inadequately Practiced,” presented by Joy W. Chang, MD, University of Michigan Medical Center
    • “Elucidation of Patient Motivators and Barriers to Pursuing Treatments for Eosinophilic Esophagitis,” presented by Joy W. Chang, MD, University of Michigan Medical Center

Other highlights from the meeting that are of interest to our community:

  • Evan Dellon, MD, from University of North Carolina at Chapel Hill, gave a lecture titled, “New Concepts in the Treatment of Eosinophilic” in which he reviewed updates in the epidemiology, nomenclature, diagnostic processes, and management of eosinophilic esophagitis (EoE).
  • Ikuo Hirano, MD, from Northwestern University in Chicago, presented data from the phase 3 trial of oral budesonide suspension (OBS) for the treatment of EoE. The study demonstrated its efficacy end points of symptom improvement and histologic efficacy.
    Read the press release from Takeda, the company investigating OBS for EoE.
    See below for a related interview with Dr. Hirano from MD Mag.
  • A session titled “Eosinophilic Esophagitis: Key Updates and Optimal Management” featured speakers Calies D. Menard-Katcher, MD (Children’s Hospital Colorado), who described the epidemiology and clinical presentation of pediatric EoE and discussed the transition of patients from pediatric to adult care; Nicholas J. Shaheen, MD (University of North Carolina at Chapel Hill), who discussed current diagnostic guidelines; and Kristle L. Lynch, MD (Perelman School of Medicine, University of Pennsylvania), who talked about the standard of care and emerging therapies.
  • Evan Dellon, MD, from University of North Carolina at Chapel Hill, presented a late-breaking abstract from a phase 2 trial of a potential therapy known as AK002 for eosinophilic gastrointestinal diseases. Allakos, the company developing this therapy is planning to initiate a Phase 3 study in EG and EGE and a Phase 2/3 study in EOE in 2020.
    See below for a related interview with Dr. Dellon from MD Mag.

The next annual meeting of ACG will take place Oct. 23-28 in Nashville, TN.

Highlights from the 2019 NASPGHAN/CPNP/APGNN Annual Meeting

The 2019 NASPGHAN/CPNP/APGNN Annual Meeting was held in Chicago Oct 16-19. APFED leadership attended the meeting to attend sessions and meet with providers, investigators, and other stakeholders to raise awareness, educate, and discuss the challenges and needs of patients with eosinophil-associated diseases and how those might be met.

We were also excited to once again offer abstract awards to outstanding research abstracts on eosinophil-associated gastrointestinal diseases (EGIDs). APFED funded two $750 awards to the best-scoring abstracts which are intended to help defray travel costs to the meeting so that the researchers may present their findings to their peers. Abstract award winners may go on to successfully compete for grants from APFED or from other funding mechanisms. Read about the abstract winners here.

Below, we summarize other highlights from the meeting that are of interest to our community:

  • The Association of Pediatric Gastroenterology and Nutrition Nurses (APGNN) offered sessions focused on pediatric feeding disorders. These talks were designed to teach attendees about primary domains that contribute to feeding disorders and the importance of early diagnosis and intervention, as well as how to support families of children with feeding disorders.
  • Drs. Amir Kagawalla (Northwestern University Feinberg School of Medicine) and Calies Menard-Katcher (Children’s Hospital Colorado) hosted a session that offered attendees the opportunity to discuss challenging cases in EoE.
  • Dr. Prerana Williamson from the University of California/Rady’s Children’s Hospital, San Diego presented research her team conducted about PAI-1 as an epithelial marker of disease severity in pediatric EoE.
  • Dr. Joshua Wechsler from the Ann & Robert H Lurie Children’s Hospital in Chicago spoke to attendees about PPI responsiveness in patients with EoE and new international consensus regarding the role of PPIs in diagnostics and treatment. A lay-friendly summary document is available from APFED.
  • The NASPGHAN Council for Pediatric Nutrition Professionals (CPNP) hosted a session specific to home parenteral nutrition and the journey from inpatient consultation to a successful transition home.
  • A session specific to upper GI interventions included talks included the types of endoscopic procedures for upper GI motility and functional disorders and the utility of these techniques in the pediatric population, including the esophageal string test, cytosponge, EndoFLIP and unsedated transnasal endoscopy. This discussion was led by Dr. Joel Friedlander of Children’s Hospital of Colorado. EndoFLIP is technology that measures the distensibility, or amount of “stretch” of the esophagus, which is believed has potential to be a marker of early fibrosis in EoE. Unsedated transnasal endoscopy which involves local anesthetic and passing endoscope into the esophagus via the nose. You may view a video of Dr. Friedlander discussing and demonstrating this technology online.
  • A talk designed to educate attendees about the barriers to getting medical foods covered by insurance company and what NASPGHAN is doing to help support efforts in this area (see our page about the Medical Nutrition Equity Act to learn more).
  • A number of poster abstracts that were presented onsite included case studies and breaking research. Poster titles and summaries may be found on the NASPGHAN website.

The 2020 annual NASPGHAN Meeting will be held Nov 04 – 09, 2020 in San Diego.

Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) Receives Renewed Federal Funding

For Immediate Release

American Partnership for Eosinophilic Disorders
P.O. Box 29545
Atlanta, GA 30359

Contact: Mary Jo Strobel, Executive Director, (713) 493-7749,


Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) Receives Renewed Federal Funding
APFED to continue participation in multi-center collaboration

(Atlanta, GA)— The American Partnership for Eosinophilic Disorders (APFED), a non-profit advocacy organization established in 2001, is pleased to share that the National Institutes of Health (NIH)  has awarded continued funding to the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) to research eosinophil-associated gastrointestinal diseases (EGIDs) and train investigators to conduct clinical research.

The five-year, $7.57 million grant (U54AI117804) is funded by the Office of Rare Diseases Research, which is part of the NIH’s National Center for Advancing Translational Sciences, as part of the Rare Diseases Clinical Research Network, and by the National Institute of Allergy and Infectious Diseases, the National Center for Advancing Translational Sciences, and the National Institute of Diabetes and Digestive and Kidney Diseases. Thanks to the generous donations of community members, APFED also provides supplemental funding to CEGIR through its HOPE on the Horizon Research Grant Program.

CEGIR brings together scientists, health care providers, patients, and professional organizations such as APFED to bring transformative changes to the care of patients with EGIDs. CEGIR first formed in 2014 after receiving $6.25 million through the NIH to research EGIDs, focusing its efforts on patients with eosinophilic esophagitis (EoE), eosinophilic gastritis (EG), and/or eosinophilic colitis (EC). During its first 5-year cycle of funding, CEGIR launched a long-term study and follow-up of patients with EoE, EG, and EC as well as several other studies to help better understand the natural history of these diseases and which treatments work for which diseases.

In addition to offering supplemental grant opportunities to CEGIR, APFED works in concert with CEGIR to ensure the patient perspective is included in all aspects of its work and to help recruit patients into critical clinical trials.

“This multi-institute collaboration involves clinical researchers from institutions across the United States and in Switzerland, all working together to better understand and treat these rare diseases,” said APFED President Dr. Wendy Book. “APFED has a long history of advocating for federal funding to research these conditions, and we are excited to continue participating in CEGIR’s important work with this renewed grant.”

To learn more about CEGIR, visit To learn more about APFED, visit


About American Partnership for Eosinophilic Disorders (APFED)
The American Partnership for Eosinophilic Disorders (APFED) is a non-profit organization dedicated to patients and their families coping with eosinophilic disorders. APFED’s mission is to embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases through education and awareness, research, support, and advocacy.

About Eosinophil-associated Diseases
Eosinophils are a type of white blood cell that helps our immune systems fight off infections and parasites. They also play a role in allergic reactions and inflammatory processes.

When a person has symptoms and an elevated number of eosinophils in their tissues, organs, and/or bloodstream, without a known cause, he/she may have an eosinophil-associated disease. These conditions are further characterized by the areas of the body in which the eosinophils have accumulated.

A few examples include the esophagus (eosinophilic esophagitis), stomach (eosinophilic gastritis), or the lungs (eosinophilic asthma).

Symptoms of eosinophil disease may vary depending on the area of the body affected, and by age. Patients often embark on a long, frustrating journey seeing many different specialists before a diagnosis is made. Although not commonly life-threatening, these chronic diseases require lifelong treatment and can cause debilitating symptoms. Most subsets of eosinophil-associated disease do not yet have an FDA-approved pharmaceutical indicated for treatment.

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