In the summer of 2010, I heard three words that would instantly change the trajectory of my life “YOU HAVE LUPUS.” My diagnosis came just over 2 months before my wedding day. My life was filled with complications, trepidation, and confusion, but my providers told me to hang in there. In 2011, the first drug ever developed specifically to treat lupus was approved by the U.S. Food and Drug Administration (FDA). It was a historic day and cause for much celebration.
However, the celebration for Black Lupus Warriors was bittersweet. The trial only had a small number of Black participants and the results for that population were inconclusive. More research in Black people living with lupus was needed to understand the effectiveness of the therapy in people who share African ancestry. The hope we needed was deferred and the answers we wanted were delayed. This was personal because I was the long suffering patient, not reaping the benefits of a revolutionary lupus therapy due to a lack of sufficient data.
As a Lupus Foundation of America Ambassador and member of the Foundation’s Lupus Research Action Network, I’m proud to be a champion for lupus research. I’m helping to bring awareness and understanding about the importance of lupus research and increasing clinical trial participation among racial and ethnic minority groups.
Nurses are such a critical component of these efforts.
As a trusted source, you have a unique relationship with healthcare providers, industry, and patients. You connect us to opportunities to stay engaged and form partnerships. You see us as more than patients or subjects, and advocate on our behalf which means so much. That’s why I’m extremely pleased to see the Let’s Talk About Lupus, Clinical Trials, and Race Session offered as a CNE accredited session during the 2022 Rheumatology Nurses Society (RNS) Rheumatology Virtual Spring Summit (April 28th-30th).
No two patients are the same, so we’re trusting that a diversity, equity, and inclusion (DEI) mindset will be employed on this pathway. We need your help talking to patients about clinical trials and options that may be available to them so we can increase trial enrollment among racial and ethnic minority populations. I hope you will be able to participate in the Let’s Talk About Lupus, Clinical Trials, and Race Session on Friday, April 29th and that you’ll join me as champion for lupus research.
Lupus Foundation of America Ambassador
Lupus Research Action Network Member