By: Kenneth M. Farber, President & CEO, Lupus Research Alliance
Image: Photo of Ken on LRA site
As the current President & CEO of the Lupus Research Alliance and someone who has spent decades on the front lines of advocacy and policy within the lupus community, I thought I had seen it all. But when the national conversation around COVID-19 put a spotlight on lupus, to say that nothing could have prepared us for the ensuing impact would be wrong.
The truth is that this pandemic has showed the true character of our community. We were prepared because our patients, our partners, and our advocates have always been ready to act. Today’s world provides an opportunity for others to Learn from Lupus and educate themselves about methods to practice safer living, a lifestyle that those affected by lupus practiced even before the pandemic, and also appreciate the daily struggles of those with lupus. Nothing has made me prouder than seeing us come together to provide support for those who need it the most while educating people everywhere about lupus.
This isn’t a story about silver linings. This pandemic has brought hardship on lupus patients in myriad ways, from gaining access to a doctor to stress related to medication supply. As our community also knows, African American, Hispanic, Asian and Native American women are more likely to have lupus, so it’s deeply concerning that the emerging data of COVID-19 shows that it disproportionally affects people of color. Lupus is a disease that can significantly impact the daily lives of those affected, including social and emotional health, yet the societal pause we’re living through has upended the ways that we connect and care for one another.
But over the past two months, I have been witness to one of the most remarkable community responses I have ever seen. Even during a pandemic, our community pushes for change and innovates. We continue to accelerate research to improve the quality of life for patients and for that, I am proud. Right now, it’s essential that we improve patient care by looking to the future of lupus research and anticipate how we can improve the quality of life for the 322,000 Americans impacted by systemic lupus erythematosus. My hope is that the attention our community has received can help Lupus Awareness Month outlast this moment in time and continue to elevate the unmet need in lupus and critical need for research funding.
When this is all over, I believe that one of things that people will be proud of is how the entire scientific community and our people have rallied. This pandemic will pass, yet our single greatest challenge remains making sure we keep the lupus community educated about the disease, how to manage it, and the best practices that will keep themselves and their loved ones safe and healthy in the future. May is Lupus Awareness Month, and it’s an honor to share what we’ve learned and give our all to those who need it the most. This is a chance to truly learn from lupus.