Stevan W. Gibson President and CEO of Lupus Foundation of America
Jeanette Andersen Chair of Lupus Europe, the co-founding organisations of the World Lupus Federation (WLF)
Lupus is a complex, chronic autoimmune disease that causes the immune system to attack healthy tissue. It is estimated that at least 5 million people worldwide have a form of lupus, which can cause symptoms including skin rash, joint pain, swelling and fevers.1 Lupus is poorly understood and significant physical, emotional and socio-economic burden remains high for people living with the disease.2
To mark World Lupus Day, we interviewed Stevan W. Gibson, President and CEO of Lupus Foundation of America and Jeanette Andersen, Chair of Lupus Europe, the co-founding organisations of the World Lupus Federation (WLF), to ask them about some of the current challenges facing the global lupus community and the need for innovation in lupus care. WLF is a coalition made up of over 200 lupus groups from around the world that are united to improve the quality of life for all people affected by lupus.
1) What is the role of patient groups in advancing lupus care?
Lupus Foundation of America: There isn’t an area – research, advocacy, education, access to care, health technology assessment or value – where the role of patient groups isn’t important. We help all stakeholders, including government and regulators understand the true impact of lupus. We help researchers identify through the patient perspective what are the most important aspects of a treatment. Patient groups also are in a unique place to collect meaningful data directly from its community.
Advancing care also calls for increasing awareness of a disease that is complex and misunderstood. Much of the world is unfamiliar with lupus and its symptoms, which makes special observances such as World Lupus Day and Lupus Awareness Month all the more important.
Lupus Europe: Most people won’t be able to recognize a lupus patient if they saw one. However, even though the disease can be invisible, the impact on day-to-day life is extremely visible. For example, in our recent survey of people with systemic lupus erythematosus in Europe, 58% who had a job said their condition significantly impacted their career.3 Critically, the fluctuations in symptoms can be quite difficult to understand for people who don’t know much about lupus. If more people understood the signs and symptoms of lupus, they may be diagnosed faster, and their outlook can be improved.
If awareness is the first step, then patient empowerment is the second. We need to support lupus patients to express themselves in a way that will help them influence doctors and policymakers who can make change happen.
2) What would you say are some of the critical unmet needs facing patients today and how has the COVID-19 pandemic impacted the community?
Lupus Foundation of America: Over the last year, we have seen lupus warriors face tremendous challenges in accessing their prescriptions for critical medications hydroxychloroquine and chloroquine. A recent international survey conducted by the World Lupus Federation and Lupus Foundation of America of more than 6,100 people living with lupus found that over half of the respondents experienced a decrease in access to healthcare during the pandemic.4
We’ve also always known the negative impact lupus has on the mental health of people living with the disease, and the pandemic in many ways has only increased this feeling of isolation. However, I’ve also seen amazing resiliency from our community, from their tireless advocacy efforts to ensure they have access to medications such as hydroxychloroquine, to seeing thousands of our lupus advocates come together this in March 2021 for the largest digital lupus advocacy conference in history to participate in educational opportunities and advocate for federal funding of critical lupus programs.
Lupus Europe: In Europe, almost one in two people living with lupus are facing depression or anxiety, yet less than half of them have medication or access to professional support. What we’re seeing is that for some patients, anxiety is continuing past the peak of the pandemic. For us, this is one of the biggest unmet needs and stand-out findings. Clearly, we are facing a double endemic that needs targeted action.
3) What do you hope for the next five years in terms of scientific innovation?
Lupus Europe: Our medium-term aspiration is that everyone with lupus is diagnosed faster and has access to a multidisciplinary expert center where they can get holistic support. In the long term, our vision is for a fulfilling life for people with lupus, until we reach a world without lupus.
We want to arrive at a point where 100% of patients have treatments that work for them, as we gain more knowledge about what triggers lupus and advance our understanding of lupus.
Lupus Foundation of America: We want to see people with lupus have access to an arsenal of safe and effective treatments. We also recently saw the launch of our next-generation, patient-powered data platform called RAY (Research Accelerated by You) that will help lupus researchers accelerate the development of new treatments and improve disease outcomes. We want to see platforms such as RAY continue to grow and innovate, and ultimately shape what real-world evidence is for the lupus research field so we can better address needs in both healthcare and drug development. We know that one size does not fit all when it comes to effective lupus treatments, so we also want to see research that reflects the diversity of the people living with lupus and the heterogenous nature of the disease.
4) Finally, if you could say one thing to the global lupus community, what would it be?
Lupus Foundation of America: We would like to thank the entire global lupus community for their unwavering commitment and perseverance to making sure people with lupus have access to their treatments and the care and services they need, especially during the COVID-19 pandemic. That said, there is much more we can do together to raise awareness, improve care and advance research. We look forward to continuing to work with partners around the world to improve outcomes.
Lupus Europe: For people that may be reading this with a lupus flare, it’s important that they feel hope. We’re optimistic that we will have more weapons in our armory to fight lupus within the next five to ten years. That hope will come faster if more patients participate in research.
The other piece is ensuring collaboration between the patient community and researchers, clinicians and pharmaceutical companies continues to evolve. Patients should be involved on an equal basis from the very start through to health technology assessments and beyond. It’s been shown time and time again, that involving patients that have been equipped with the skills they need, gives better results.
1. The Lupus Foundation of America. What is Lupus? Available at: https://www.lupus.org/resources/what-is-lupus. Accessed April 2021.
2. Al Sawah S, Daly RP, Foster SA, et al. The caregiver burden in lupus: findings from UNVEIL, a national online lupus survey in the United States. Lupus. 2017 Jan;26(1):54-61. Accessed April 2021.
3. Cornet, A. et al. Living with systemic lupus erythematosus in 2020: a European patient survey. Available at: https://lupus.bmj.com/content/8/1/e000469. Accessed April 2021.
4. World Lupus Federation. The Impact of the COVID-19 Pandemic on People Living with Lupus. Available at: https://www.lupus.org/news/global-survey-of-people-with-lupus-finds-decrease-access-healthcare. Accessed April 2021.
Veeva ID: Z4-32927
Date of Prep: May 2021