Eczema Patients Share Health, Quality of Life Challenges with FDA

What’s important to people with eczema when it comes to treatments that will make a difference in their lives?

That was the purpose of the More Than Skin Deep meeting held in Silver Spring, Maryland, on Sept. 23, 2019. It was the first externally led patient-focused drug development (PFDD) meeting dedicated to eczema. The meeting brought together people living with eczema.

Five organizations, including Allergy & Asthma Network, worked together to organize this PFDD meeting. They ensured the U.S. Food and Drug Administration (FDA) and other stakeholders heard from people living with eczema.

More than 160 people attended the meeting, with nearly 4,000 more joining via webcast.

What eczema issues were addressed at the More Than Skin Deep PFDD meeting?

Patients, families and caregivers talked openly with the FDA about the many health and quality of life challenges with eczema. They talked about the burden of symptoms and the lack of treatments for uncontrolled eczema. They talked about treatments that matter most to them.

In a live survey taken by 1,508 people in attendance at the meeting, the vast majority – 89% – reported dissatisfaction and/or harm with their current eczema treatment options. “Immediate and sustained relief from itch” was cited as the biggest treatment need. Participants also expressed the need for more targeted approaches to therapy.

“We must continue to push the envelope to better understand phenotypes and underlying immunology in eczema to ensure that we get the right treatment to the right patient in the most timely and effective manner,” said Tonya Winders, President and CEO of Allergy & Asthma Network.

What is the ‘Voice of the Patient’ Report for Eczema

The collaborating organizations published a “Voice of the Patient” report following the meeting. The report is called: More Than Skin Deep: Understanding the Lived Experience of Eczema. It summarizes the meeting and the findings of the survey of people living with eczema. The report discusses what is important to patients when it comes to current and future treatments for eczema.

The report helps inform FDA, medical researchers and drug development companies about what is important to people living with and managing eczema.

Visit the More Than Skin Deep website to:

• Download the Voice of Patient Report
• Download the two-page summary
• View the webcast
• Learn more about the survey that informed the Voice of the Patient Report

The More Than Skin Deep PFDD meeting continues to make an impact. AAN and other host organizations are working on two different publications of the survey results (more than 1,500 responses) to highlight caregiver and adult burden of the disease.