All posts by Amity Westcott-Chavez

Updates on Formula Shortage

APFED Blog, What's New

Page updated 7/13/22

Background

In February 2022, the U.S. Food and Drug Administration (FDA) announced investigation of consumer complaints of Cronobacter and Salmonella infections. All cases reportedly consumed powdered infant formula produced from the Abbott Nutrition facility in Sturgis, Michigan, and advised consumers against using specific logs of Similac, Alimentum, or EleCare powered infant formulas. Abbott soon issued a voluntary recall of powdered formulas manufactured in Sturgis. APFED is updating this page with resources and information as it becomes available.

 

Information and Resources from Abbott

 

Information and Resources from FDA

Information and Resources from HHS

Information and Resources from the White House

Information and Resources from Medical Societies and Nonprofit Organizations

Information and Resources from Manufacturers of Other Brands of Amino-acid Based Formula

What You Can Do

  • Speak to your doctor before making any changes to your/your child’s diet or before using an alternative to regular brand of formula (see below).
  • Do not dilute formula, such as by adding water, in attempt to make your existing supply last, nor attempt to make your own formula.


APFED Advocacy

APFED is sharing information with patients and caregivers about the recall, and communicating questions and patient impacts to clinicians and researchers, the press, and to formula manufacturers. We are working collaboratively with research partners and other organizations to capture patient experience with accessing specialty ingredients and amino acid formulas during supply chain disruptions due to COVID and to this formula recall, and the impacts on disease management and health. The goal is a publication in the near future that documents barriers to access and can help inform future policies and frameworks to improve access to medical foods in the event of supply chain disruptions. We are also continuing our ongoing advocacy for passage of the Medical Nutrition Equity Act (see below for details).

 

Medical Nutrition Equity Act

The current formula shortage is a significant crisis, and we expect resolution in the near future. For those who are denied reimbursement by insurance for elemental formula, the lack of access will continue until there is legislation to facilitate that access. Please join us in calling on Congress to resolve this issue through enactment of the Medical Nutrition Equity Act. Visit nutritionequity.org to learn more and to take action!

 

 

National Eosinophil Awareness Week (May 15-21, 2022) Recognizes Impact of Eosinophil-associated Diseases

Announcements, APFED Blog, Press Releases, What's New

Atlanta, GA (May 13, 2022) – The American Partnership for Eosinophilic Disorders (APFED) will celebrate the 15th annual National Eosinophil Awareness Week (NEAW) from May 15-21, 2022. APFED is engaging people across the world to raise awareness of eosinophil-associated disorders.

Eosinophils (pronounced “ee-oh-sin-oh-fills”) are a type of white blood cell that is formed in the blood marrow. They are part of the immune system and help with infections, inflammation, and allergies. If a person has too many eosinophils, without a known cause, they may have an eosinophil-associated disease.

Many patients experience a delayed diagnosis of eosinophil-associated diseases. The diagnosis depends on where in the body the eosinophils are found. Eosinophils may affect different parts of the body, including but not limited to the gastrointestinal tract, heart, sinuses, blood, lungs, bladder, and connective tissue.

Eosinophil-associated diseases are rare. They are chronic conditions that require long-term management. They can also be debilitating and impact quality of life. The conditions affect both adults and children.

In 2007, the U.S. House of Representatives passed House Bill 296, an initiative spearheaded by APFED, to officially recognize the third week of May as NEAW. Since then, advocates have increased efforts during this special week to shine a public light on eosinophil-associated diseases and the impacts of living with them.

“Although we work year-round to educate, National Eosinophil Awareness Week is a dedicated time to increase efforts to teach the public and medical communities about symptoms, diagnostics, and treatments. When symptoms are recognized more quickly, the diagnostic timeline decreases, and patients can start treatment sooner,” said Mary Jo Strobel, APFED’s Executive Director. “We are calling on everyone to join our community’s efforts to educate, and to learn about these conditions and their impacts.”

Buildings and landmarks around the world are lighting up magenta in honor of National Eosinophil Awareness Week. A list of locations that will light up is available at apfed.org/lightup.

APFED is grateful to its education partners for supporting its 2022 celebration of National Eosinophil Awareness Week. This includes Abbott, Allakos, Arena Pharmaceuticals, AstraZeneca, Bristol Myers SquibbTM, Ellodi Pharmaceuticals, GlaxoSmithKline, Nutricia, Sanofi, and Regeneron. Their support provides APFED with the means to increase the dissemination of educational materials to patients, providers, and the public with broad outreach.

To learn more about eosinophil-associated diseases and ways to celebrate National Eosinophil Awareness Week, please visit apfed.org/NEAW.

About American Partnership for Eosinophilic Disorders (APFED)

Founded in 2001, the American Partnership for Eosinophilic Disorders (APFED) is a 501(c)(3) nonprofit organization that assists and supports patients and families affected by eosinophil-associated disorders, by providing education, creating awareness, supporting research, and promoting advocacy. To learn more, visit apfed.org.

 

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American Partnership for Eosinophilic Disorders Welcomes New Member to Board of Directors

Announcements, APFED Blog, Press Releases, What's New

(Atlanta, GA) –The Board of Directors of the American Partnership for Eosinophilic Disorders (APFED) has announced the election of a new board officer, James DeLano.  Mr. DeLano brings to APFED his extensive experience in the development and implementation of policy and compliance strategy.

Mr. DeLano is a Senior Environmental Engineer with nearly 30 years of experience in stakeholder engagement, policy development and implementation, and project and operations management.

As the father of an adolescent who has chronic disease including eosinophilic esophagitis (EoE), Mr. DeLano understands firsthand the challenges that patients and their caregivers face, particularly when it comes to diagnostic delays, adequate disease management, and the impact the disease has on quality of life.

“For more than two decades, APFED has demonstrated an unwavering commitment to serving the needs of our patient community,” shared Mr. DeLano. “It is a privilege to serve as an advocate with this organization and to help shape and implement initiatives that can improve the lives of those with eosinophil-associated diseases.”

“APFED is thrilled to have the expertise that Mr. DeLano brings to our board,” said APFED President, Dr. Wendy Book. “The DeLano family has made significant contributions to eosinophil-disease community and has long advocated for patients and families living with these diseases. We look forward to working with James to carry out APFED’s mission as we educate, advocate, and advance research.”

Founded in 2001, APFED is a non-profit organization dedicated to patients and their families coping with eosinophil-associated diseases. Eosinophil-associated diseases are chronic inflammatory conditions characterized by elevated levels of eosinophils (a type of white blood cell) in one or more specific areas of the body. The higher-than-normal number of eosinophils cause inflammation and damage to tissues and organs. These chronic diseases require lifelong treatment and symptoms may be debilitating.

“It is a pleasure to welcome James DeLano to APFED’s Board of Directors,” said APFED Executive Director, Mary Jo Strobel. “His insights, perspectives, and vast firsthand knowledge of unmet needs in our community are truly assets to our organization and to the entire patient community. We are excited to have his guidance and leadership as APFED continues to grow and expand.”

To learn more about APFED and about eosinophil-associated diseases, visit www.apfed.org.

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. https://apfed.org/

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Action Needed on Medical Nutrition Equity Act

Advocacy, APFED Blog, What's New

The Medical Nutrition Equity Act (MNEA, S2013/HR3783) would provide consistent, nationwide insurance coverage of medically necessary foods, such as elemental formula for treatment of eosinophilic gastrointestinal disorders.

How You Can Help This Legislation Pass:

  • Ask those who represent you in Congress to co-sponsor S2013/HR3783. A list of current co-sponsors is listed on nutritionequity.org/cosponsors/. There are tools on this website to help you find your representatives and send a request.
  • Call attention to the bill through social media using the hash tags #whynow4MNEA and #S2013HR3783. Examples of posts/tweets:

#whynow4MNEA? Many Americans who use elemental formula to treat EGID do not have this therapy covered by insurance. Proposed legislation will help ensure coverage for #medicalfoods. Calling on {{@tag your Congressional legislator here}} to support passage of #S2013HR3783!

#whynow4MNEA? Legislation that would provide insurance coverage of #medicalfoods would help my son, who relies on dietary therapy. Calling on {{@tag your Congressional legislator here}} to co-sponsor #S2013HR3783!

  • Share your experience with insurance coverage of medical foods on the website of the Patients and Providers for Medicial Nutrition Equity coalition.
  • Encourage family and friends to also ask members of Congress to co-sponsor and support passage of MNEA (S2013/HR3783).

Learn more about MNEA at nutritionequity.org.

Little Airways Big Voices

New Initiative Brings Voice of Families Impacted by Childhood Asthma to the Forefront of Drug Development

Announcements, APFED Blog, Media Info, Press Releases, What's New

FOR IMMEDIATE RELEASE

Four nonprofit organizations collaborate to bring “Little Airways, Big Voices” to the FDA

Washington, D.C. — September 15, 2021 — The Allergy & Asthma Network, American Lung Association, American Partnership for Eosinophilic Disorders, and Asthma and Allergy Foundation of America are collaborating on a new initiative — Little Airways, Big Voices. The initiative aims to amplify the patient and caregiver voice to inform the future of treatment for asthma in children.

The collaborative will host an externally-led patient-focused drug development (EL-PFDD) meeting on September 20, 2021, from 10 a.m. – 3 p.m. EDT. The goal of the meeting is to gather patient and caregiver insights about living with and managing pediatric asthma to share with the U.S. Food and Drug Administration (FDA), as well as researchers, clinicians, and drug developers.

“The patient voice is sometimes forgotten during the long and strenuous drug development process,” states Kenneth Mendez, CEO and president of the Asthma and Allergy Foundation of America. “We are honored to co-host this event to ensure that future innovative therapies are developed and reviewed based on input from real families living with chronic asthma, especially in children.”

Anyone who has experience living with and/or managing asthma in childhood is invited to attend the Little Airways, Big Voices EL-PFDD meeting. Participants will be invited to call in, submit written comments and questions, and take polls.

Patients and caregivers can also add their voice to the initiative by completing a brief survey or submitting written comments about their experiences living with and managing asthma in childhood.

“There are more than six million children living with asthma, making it the most common chronic condition and one of the leading causes of school absenteeism,” said Albert Rizzo, M.D., chief medical officer for the American Lung Association. “Strategic partnerships like Little Airways, Big Voices are critical to advancing our research, treatment, and overall care for children with asthma.”

All the information gathered from this EL-PFDD meeting, survey, and written comments will be analyzed and summarized in a Voice of the Patient report to be released in 2022. The report will help inform the FDA, researchers, clinicians, and drug companies about what is important to people living with and managing asthma in children.

To learn more about the Little Airways, Big Voices initiative, visit littleairwaysbigvoices.org.

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ABOUT THE ALLERGY & ASTHMA NETWORK

The Allergy & Asthma Network is the leading nonprofit patient education and advocacy organization for people with asthma, allergies, and related conditions. The patient-centered network unites individuals, families, healthcare professionals, industry, and government decision makers to improve health and quality of life for Americans with asthma and allergies. The organization specializes in making accurate medical information relevant and understandable to all while promoting evidence-based standards of care. Learn more at allergyasthmanetwork.org.

ABOUT THE AMERICAN LUNG ASSOCIATION

The American Lung Association is the leading organization working to save lives by improving lung health and preventing lung disease, through research, education, and advocacy. Their work is focused on four strategic imperatives: to defeat lung cancer; champion clean air for all; improve the quality of life for those with lung disease and their families; and create a tobacco-free future. Learn more at lung.org.

ABOUT THE AMERICAN PARTNERSHIP FOR EOSINOPHILIC DISORDERS

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. Learn more at apfed.org.

ABOUT THE ASTHMA AND ALLERGY FOUNDATION OF AMERICA

Founded in 1953, the Asthma and Allergy Foundation of America (AAFA) is the oldest and largest non-profit patient organization dedicated to saving lives and reducing the burden of disease for people with asthma, allergies and related conditions through research, education, advocacy, and support. AAFA offers extensive support for individuals and families affected by asthma and allergic diseases, such as food allergies and atopic dermatitis (eczema). Through its online patient support communities, network of local chapters and affiliated support groups, AAFA empowers patients and their families by providing practical, evidence-based information and community programs and services. Learn more at aafa.org.

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PRESS CONTACT

Sanaz Eftekhari
Asthma and Allergy Foundation of America (AAFA)
Phone: 202.974.1223
Email: media@aafa.org