The current global health crisis has redefined what it means to live with respiratory and immunological conditions like asthma and lupus. Due to the increased risk of severe illness from COVID-19, having asthma and lupus today is even more complex and burdensome. The past year has shown we must do much more to engage with patient and provider communities to make a meaningful impact within these diseases that affect millions.
May marks several important moments for these patient communities – Asthma Awareness Month, Lupus Awareness Month, National Eosinophilic Awareness Week, World Asthma Day and World Lupus Day, in addition to a significant moment of scientific exchange at the American Thoracic Society 2021 International Conference and American Association of Immunologists Annual Meeting.
These are empowering moments for the millions of Americans living with asthma or lupus to spread awareness and take action, and for the medical and scientific communities to advance the research and science surrounding these conditions. Moreover, May serves as an important reminder of the work required to better address existing health inequities among minority communities living with asthma or lupus, such as the availability of and access to treatment options, resulting in disproportionate risks.
Despite the challenges of the world today, we remain rigorous in our pursuit to improve patient outcomes. We are proud to stand with two of the leaders and champions of patients living with these diseases – the Lupus Research Alliance and Allergy and Asthma Foundation of America – and encourage others to help spread awareness and empower action throughout May and beyond.
Mina Makar, Senior Vice President of US Respiratory & Immunology at AstraZeneca, connected with Kenneth M. Farber, President and CEO of the Lupus Research Alliance and Kenneth Mendez, President and CEO of Asthma and Allergy Foundation of America to further understand what May means to the people living with these diseases, particularly in light of the pandemic, and how we can best support.
The pandemic has brought health disparities to the forefront of the American consciousness…it has put tremendous focus on the need to meet people where they are.
1. Mina: COVID-19 has introduced unprecedented challenges for patients living with asthma and lupus and put a spotlight on, as well as worsened, the existing health inequities within these patient communities. Can you speak to the unique challenges of these diseases, especially amid the pandemic?
Kenneth M. Farber: The pandemic has brought health disparities to the forefront of the American consciousness – a positive movement for people with lupus and people of color who are disproportionately impacted by many chronic illnesses like lupus. It has put tremendous focus on the need to meet people where they are – to get services into communities with limited resources, to make telehealth visits more common, to rethink clinical trial recruitment and operations, and make research participation more accessible. Another issue is the important role research plays in achieving health equity and the critical need for research participants to reflect the demographics of those with the disease.
Kenneth Mendez: Disparities in asthma are largely driven by social and structural factors, many of which have been front and center during the pandemic. In healthcare, these factors are responsible for a system in which certain populations are underrepresented in clinical trials (leading to safety and efficacy data that may not represent racial and ethnic minorities), lack equal access to quality care specialists, and face barriers in accessing medications due to affordability and step therapy.
Poor asthma outcomes are also closely correlated with socioeconomic disadvantage. Low-income families—disproportionately represented by Black, Hispanic, and Indigenous Americans—face significantly higher burden of disease. AAFA is working with community-based programs that conduct home visits to help occupants with asthma address issues and advocate for improved housing quality.
Asthma is increasingly recognized as a condition with considerable heterogeneity, rather than a single uniform disease. This evolving knowledge promotes new approaches to asthma care that are more patient-centered and individualized than ever before.
2. Mina: While millions across the country are living with asthma and lupus, millions more are caregivers, family or friends. How can those who do not live with these diseases best support the community?
Kenneth M. Farber: A key challenge for people with lupus is that they typically do not look sick because lupus is an invisible disease. While people with lupus always must be very careful about personal interactions to protect their health, the pandemic forced all of us to be more mindful and careful. The Lupus Research Alliance developed a Learn from Lupus campaign to point out this shared experience. Now that family and friends have lived with some of the limitations people with lupus do, hopefully, they can better understand some of the challenges of living with this disease. Family and friends can support people with lupus by listening and not dismissing the needs of someone who says they are too tired to do something. They should be flexible and understand they may have to change plans to accommodate how their loved one with lupus is feeling. Those who love people with lupus can help raise awareness, join in fundraising and advocacy activities, and help facilitate participation in research.
Kenneth Mendez: We encourage caregivers, family members, and friends to learn about asthma—understanding your loved one’s asthma and recognizing signs of uncontrolled asthma are the first step. Remind your loved one to follow their asthma plan, adhere to treatments, and make sure to stay prepared by keeping quick-relief medication with them. Even if you don’t have a loved one with asthma, everyone can take steps to support and advocate on behalf of people with chronic lung conditions. This can include supporting asthma-friendly policies and making climate-friendly choices given climate change has a direct impact on asthma.
3. Mina: What do you hope for the future of asthma and lupus care?
Kenneth M. Farber: Our hope for the future of lupus care is personalized treatment with many treatment options to fit each patient. The key challenge to lupus management is its heterogeneity – the many different ways lupus manifests from person to person. Our organization is set on a new strategic path to unravel this heterogeneity, to turn the problem of lupus complexity into the solution with individualized treatments and a cure.
Kenneth Mendez: Asthma is increasingly recognized as a condition with considerable heterogeneity, rather than a single uniform disease. This evolving knowledge promotes new approaches to asthma care that are more patient-centered and individualized than ever before. We hope to see more clinicians and healthcare providers specialize in treating asthma and allergies, particularly in racial and ethnic minority populations. Increasing diversity in the healthcare workforce and providing training on implicit bias in healthcare settings can help reduce disparities in asthma. We look forward to partnering with other stakeholders to build, expand, and support community-based interventions that will improve asthma outcomes in high-risk populations.
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For more information about how the Lupus Research Alliance and Asthma and Allergy Foundation of America are supporting these awareness months and for tools to help get engaged, visit LupusResearch.org and AAFA.org.