Understanding the struggles faced by people living with eczema is essential for improving treatment and care. A recent meeting in Maryland focused on these very challenges, bringing together patients, families, caregivers, and the U.S. Food and Drug Administration (FDA) to discuss better solutions for managing eczema.
Background of the Meeting: More Than Skin Deep
On September 23, 2019, a crucial event called the “More Than Skin Deep” meeting was held in Silver Spring, Maryland. The meeting’s main aim was to gather insights from people with eczema about the treatments they need and what matters most to them when managing the disease. This was the first externally led patient-focused drug development (PFDD) meeting dedicated solely to eczema.
The meeting brought together over 160 attendees, with nearly 4,000 additional participants joining via webcast. It was organized through collaboration between five key organizations, including the Allergy & Asthma Network, and it ensured that the voices of those living with eczema were heard by the FDA and other stakeholders.
Key Issues Addressed During the Meeting
The discussion at the meeting revolved around various challenges faced by people living with eczema, both in terms of health and quality of life. Patients, families, and caregivers shared their stories and concerns openly with the FDA, highlighting the significant burden caused by the symptoms of eczema. Many participants discussed how eczema impacts their daily lives and the difficulty of finding effective treatments.
The survey conducted at the meeting, which involved 1,508 attendees, revealed striking results. A large percentage, 89%, expressed dissatisfaction with their current eczema treatments. In addition to dissatisfaction, many participants shared that existing treatments caused harm or did not provide the relief they needed. The overwhelming priority for most was “immediate and sustained relief from itch,” emphasizing the need for treatments that specifically address the distressing itchiness that is often associated with eczema.
Moreover, patients stressed the importance of more targeted treatment approaches that could be personalized to suit the varying needs of individuals suffering from eczema. Tonya Winders, President and CEO of the Allergy & Asthma Network, emphasized the importance of continued research into the phenotypes and immunology of eczema to develop treatments that can reach the right patients at the right time. This was seen as a critical step in improving the effectiveness of eczema treatments.
What is the ‘Voice of the Patient’ Report for Eczema?
Following the meeting, the collaborating organizations published a comprehensive report titled “More Than Skin Deep: Understanding the Lived Experience of Eczema.” This report provides a detailed overview of the discussions held at the PFDD meeting and summarizes the key findings from the survey of 1,508 individuals living with eczema. The report provides invaluable insights into what matters most to patients, both in terms of current treatments and future developments for eczema care.
The report’s main aim is to help inform not only the FDA but also medical researchers and pharmaceutical companies working on eczema treatments. By incorporating the perspectives of those directly affected by the disease, the report is intended to guide better drug development strategies and ensure that new therapies align with the needs of the people who will ultimately use them.
Impact of the ‘More Than Skin Deep’ PFDD Meeting
The impact of the More Than Skin Deep PFDD meeting continues to resonate within the eczema community. The Allergy & Asthma Network (AAN) and other host organizations are working on two additional publications based on the survey results. These publications will focus on the burden of eczema from the perspectives of caregivers and adults living with the disease.
These additional publications are crucial for highlighting the challenges faced by both caregivers and individuals who suffer from eczema. By shedding light on these burdens, they aim to provide a more comprehensive understanding of eczema and the ways it affects those who are involved in managing it on a day-to-day basis.
Conclusion
The “More Than Skin Deep” meeting and its resulting report have had a significant impact on the way eczema is understood and treated. It has highlighted the importance of focusing on the real-life experiences of people with eczema and ensuring that their voices are heard in the development of new treatments. The ongoing work of the Allergy & Asthma Network and other organizations will continue to push for better solutions to the challenges faced by people with eczema.
Looking ahead, the ultimate goal is to improve the quality of life for those living with eczema through better treatments and a deeper understanding of the disease. This will require continuous collaboration between patients, caregivers, healthcare professionals, and researchers. The data collected during these meetings and through surveys will play a key role in driving the development of more effective treatments that address the unique needs of each patient.
As the conversation about eczema continues, it is crucial to keep the focus on the lived experiences of patients. Only through such a collaborative effort will it be possible to develop therapies that not only relieve symptoms but also enhance the overall quality of life for those affected by eczema.
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