Inspired by Our Lupus Community

As Lupus and Allied Diseases Association (LADA) enters our 43rd year of existence as an all-volunteer, passion-driven charity led by individuals with lupus and allied diseases and their loved ones, I am filled with admiration and draw inspiration from the millions of Americans struggling to manage their #lupus or other #immunocompromising conditions in the face of COVID-19 and additional adversities with tremendous grace, dignity, and courage. Despite dealing with a global pandemic, an economic crisis of massive proportions, systemic racism, travel restrictions, social distancing, mask requirements, contradictory news reporting, hydroxychloroquine hijacking, school and work videoconferencing, telehealth appointments, drug scarcities, food and basic essentials shortages, an unprecedented political climate, an assault on the US Capitol, and an overburdened and inequitable healthcare system; people with lupus and other chronic conditions and their loved ones, #carepartners, healthcare providers, and patient advocacy organizations have demonstrated remarkable adaptability, perseverance and #resilience this year.

This is not surprising, since dealing with a chronic #autoimmune disease like lupus teaches you very early on about unpredictability, and how to be patient, avoid people with germs, wear masks in public, stock up on essentials, and rely on your medical treatment team and credible evidence-based scientific resources for information. We understand living with isolation, pain, limitations, and loss and that some days it is simply a victory to get out of bed, shower and put on clean pajamas. We rely on the promise of research to discover better, safer treatments and cures to motivate us to face each day. This real world training certainly comes in handy during a pandemic.

Our lupus advocacy community began over 50 years ago at kitchen tables and in church basements where the newly diagnosed and their families came together to find answers, and provide comfort and support for each other at a time when little information existed on this confounding disease. These small groups grew into a grassroots effort that eventually became larger organizations with chapters, affiliates and virtual support systems that now post, tweet, chat, snap, share and like with the touch of a finger. For too many decades our community has witnessed the devastation of this relentless disease, shed countless tears, and spent hours praying and grieving in hospitals, places of worship, and burial grounds. Advancing lupus and autoimmune drug development and research has become a priority for individuals with lupus and their loved ones who have fought to not only manage their disease but to also make their voices heard along the way.

Last February, when I returned home from an advocacy event in our nation’s capital, I could never have imagined that the next 12 months would be filled with life altering events on a global, national, state and personal level. Although I am heartbroken following the recent losses of my beloved Mother, Father, Mother-in-law, and a cherished friend, I am slowly moving forward. I remain cautiously optimistic about the future between the development of several COVID-19 vaccines and their rollout, the recent US FDA approval of belimumab (Benlysta™, @GlaxoSmithKline) and voclosporin (Lupkynis©, @AuriniaPharmaceuticals) for the treatment of #lupusnephritis, and our welcomed engagement with ICER in providing our unique patient viewpoint on their current review of the comparative clinical effectiveness and value of these two treatments. I am extremely honored to lead a national lupus organization during this time and inspired by our ability to come together as a community to face our challenges, overcome adversities, and construct a healthier, more empathetic, equitable and robust culture.