When you have a chronic condition or care for someone who does, you are the expert on how it impacts your daily life. But too often, voices like yours are not part of the research and development of new medicines and treatments.

This practice needs to change. The Asthma and Allergy Foundation of America (AAFA) worked with the Allergy & Asthma Network, the American Lung Association, and the American Partnership for Eosinophilic Disorders to create and host the Little Airways, Big Voices Initiative.

The goal of the Little Airways, Big Voices program is to make patients and caregivers a key part of clinical research and drug development for children with asthma. We did this by empowering you to share what it’s like to live with asthma in childhood and what’s missing from current treatment options. To get as many voices and perspectives as possible, we sent out a survey, collected written comments, and held an externally-led patient-focused drug development meeting (PFDD).

We published our findings in the Little Airways Big Voices: Voice of the Patient Report on Asthma in Childhood. The stories from this project show the major impact asthma in childhood has on the lives of the people affected.

What Is a Patient-Focused Drug Development Meeting?

The Food and Drug Administration (FDA) created the PFDD initiative to collect patient insights on specific diseases, including their impact on daily life and treatment options. PFDD meetings are designed to connect patients and caregivers directly with the FDA, as well as researchers and drug developers. Some PFDD meetings are led by the FDA and others are externally led by patient advocacy organizations. The meetings and resulting Voice of the Patient reports help the FDA see what is important to patients. This includes what people want treatment to look like (apart from a cure).

Little Airways, Big Voices showed that people managing asthma in childhood want treatments that:

• Reduce asthma symptoms
• Have fewer side effects
• Allow them to take part in more activities
  
  

The heartfelt stories from the meeting show how far we’ve come. They also remind us how much work remains to improve the lives of people living with asthma.

During the project, it was inspiring to see how people cope with the physical and mental burden of asthma in childhood and advocate for new treatment options. Little Airways, Big Voices showed how much impact asthma in childhood can have on people’s quality of life. It also revealed the need for more research and the development of new medical treatments.

Through patient-centered research, you can shape a brighter future by sharing your perspective with key stakeholders in drug research and development.

Little Airways, Big voices was a joint effort among four patient-advocacy organizations and supported by three sponsors, including Sanofi and Regeneron, who share this observation about the initiative.

“Regeneron and Sanofi are proud to work alongside organizations like the Asthma and Allergy Foundation for America (AAFA) to help to identify and address unmet needs of the asthma community,” said Yamo Deniz, Vice President of Global Clinical Development and Head of Immunology Global Medical Franchise at Regeneron, and Marissa Poole, U.S. General Manager of Dermatology, Respiratory and Gastroenterology at Sanofi. “Recognizing the everyday challenges and potentially life-threatening symptoms that millions of pediatric asthma patients may face, we remain committed to empowering the lives of those impacted by this disease.”