Patient organisation interview: John Walsh, COPD Foundation
John Walsh, President of the COPD Foundation, offers an introduction to the organisation’s work and shares some insight into the recent COPD Global Patient Leadership Summit.
Can you tell us about the COPD Foundation and your area of work?
The COPD Foundation was founded in the US in 2004 as a direct result of numerous requests, not only from patients, but also the scientific and medical communities, to create an organisation focused on the individuals currently affected by chronic obstructive pulmonary disease (COPD), and raise awareness of the condition. The COPD Foundation is unique in that it is a true collaboration between the patient, scientific and clinical communities. As you need researchers to develop new therapies, clinicians to improve health outcomes for individuals with COPD, you need patients to participate in research– it is essential to have all of the stakeholders engaged.
How did you come to set up the COPD Foundation?
I was diagnosed with alpha-1 related genetic COPD in 1989; three of four of the siblings in my family have the condition. We started the Alpha-1 Foundation in 1995 to specifically focus on providing the leadership and resources to increase research, promote worldwide detection and cure alpha-1. The genesis of starting the COPD Foundation was the successful experience with the alpha-1 related genetic COPD community.
Can you tell us about the recent COPD Global Patient Leadership Summit? What was the purpose of the meeting, and what were the outcomes?
The COPD Global Leadership Patient Summit was the first time that patient and clinical leadership from so many countries had a direct exchange on the feasibility of establishing a collaboration to help support their respective COPD community engagement. The summit was a launch pad for a global COPD movement. Our primary objective was to get a consensus around starting a community that is able to facilitate ongoing dialogue with individuals with COPD on a global level, and help people get organised on a country-by-country basis.
The event was opened by Dña. Paloma Casado Durandez from the Spanish Ministry of Health, Social Service and Equality, and we had presentations from European Lung Foundation (ELF) Chair Dan Smyth and former ELF Chair Monica Fletcher. We were really pleased to have ELF there as part of the collaboration.
What do you enjoy most about your work?
I enjoy being able to inform, educate, empower and engage other people with COPD to become involved. I’m also proud of our ability to get researchers to work together, and to get pharmaceutical companies to collaborate. For example, we have the world’s largest database of people with COPD in our COPDGene project. The information in the database is very specific to each individual and we are able to cluster these people into different sub-groups known as phenotypes. This will help us facilitate the development of more specific therapies and personalise medicine in the future.
We are also proud of organising the COPD Biomarkers Qualification Consortium where we have records of around 120,000 participants with COPD from the large pharmaceutical and government-funded studies in the US for biomarkers. It’s an extremely valuable resource for the research community. We filed our first Biomarker Qualification dossier currently under final review by the US Food and Drug Administration (FDA) and recently filed a similar dossier with the European Medicines Agency (EMA) for their consideration.
What are the key challenges you face in the COPD advocacy field?
The biggest challenge is the lack of awareness of COPD in general. The next one is the lack of active engagement of individuals with COPD both locally and on a global basis. We need to spread the importance of participating in clinical research, adherence to our medications, and to continue to fight or advocate for access to therapies that are approved by the regulators. The main question is: how do we make the broader COPD community aware that they can take action today so that they can breathe better tomorrow?
What are you most proud of in your organisation?
Earlier this month, we launched a new social engagement platform, where stakeholders in COPD can create a profile and find other people like them (the official launch is on World COPD Awareness Day, Wednesday 19 November). We think that this will be a very popular way for people to communicate with and learn from each other.
We also recently launched our COPD Patient Powered Research Network, where we are recruiting and enrolling over 100,000 people with COPD into a database. Our objective with this is to be able to identify appropriate people for clinical studies and connect them with the appropriate researcher.
Is there anything else you'd like to share with our readers?
Most people with COPD don’t have a proper diagnosis or access to therapies that will improve their health. Sharing educational, awareness and advocacy resources will be a catalyst for the engagement of individuals with COPD. I think that the power of the global COPD community working together cannot be underestimated. We need individuals to realise the benefits of participating in clinical studies, as that’s the only way that we will get new therapies. COPD is almost always preventable and mostly treatable and, some day, we believe it will be curable.
I’d also like to thank ELF for their focus on COPD, and for their collaboration with the COPD global initiative.