The Purpletuity Project: Lupus Awareness & Advocacy
Just over a month ago, on February 28, the Lupus Foundation of America posted an article, “What the Coronavirus Means for People with Lupus.” At the time, it was still being referred to as a new virus or a new strain of coronavirus. And the likelihood of catching the coronavirus in the United States was thought to be very low. Nevertheless, since lupus patients have compromised immune systems and we are at higher risk for infections and viruses, tips for minimizing the risk for infection were shared. As a lupus patient and advocate, I reposted it on my personal Facebook page with my own witty commentary, imploring people to be cautious rather than fearful and to take intentionally hygienic measures.
Obviously, in the month since, things have changed. Drastically. As have the ways that COVID-19 is affecting lupus patients.
Hydroxychloroquine (brand name Plaquenil) and chloroquine (brand name Aralen) are two medications commonly used by tens of thousands of Americans to manage the symptoms of lupus (as well as rheumatoid arthritis and malaria). These drugs are also emerging as potential treatments for the coronavirus (COVID-19).
I first heard about this several weeks back in a Facebook Group run by and for lupus warriors all across the world. We understood this data to be preliminary. The tests were in the early stages, trials only included very small sample sizes, and much more would need to be done to gain approval by entities like the FDA.
Unfortunately, on March 21, Donald Trump tweeted the following:
HYDROXYCHLOROQUINE & AZITHROMYCIN, taken together, have a real chance to be one of the biggest game changers in the history of medicine. The FDA has moved mountains - Thank You! Hopefully they will BOTH be put in use IMMEDIATELY. PEOPLE ARE DYING, MOVE FAST, and GOD BLESS EVERYONE!
He had mentioned hydroxychloroquine and chloroquine in passing in COVID-19 related press conferences the week prior, but this took the conversation to another level. Although many attempted to refute his touting the drug as a magical cure (including his own infectious diseases advisor, Dr Anthony Fauci), these statements have proven to be more dangerous than we could have ever imagined. As of April 1, hydroxychloroquine and chloroquine have both been added to the agency's drug shortages list as a result of a significant surge in demand.
I have been taking hydroxychloroquine since my diagnosis with lupus and rheumatoid arthritis in 2016. And I know many other lupus patients whose lives depend on these drugs. In addition to navigating a pandemic as an immunocompromised person, worries about access to our medications have been added to the list.
But even in the midst of chaos there is hope.
People ask me all the time, “What can I do to support you and others with lupus?” That question has been asked more often as we manage our response to COVID-19. Awareness is the first step. And it is a major one. The more you know, the more empowered you are to provide support in whatever ways it is needed. The more you know, the better your capacity to develop and ask critical questions.
National organizations such as the Lupus Foundation of America and the Lupus Research Alliance have been doing amazing work to keep lupus warriors and the larger community engaged and informed. There have been webinars with doctors and advocates; the hashtag #withoutmyHCQ was started to give lupus warriors a space to tell their stories; and an online mechanism was created for people to engage with Congress around the issue of access to medication.
I was even inspired to do a soft launch of my own lupus organization a few months before the original start date. The Purpletuity Project will be a hub for information about the lupus community and a connection to concrete actions that can be taken to support lupus warriors.
It is my prayer that this crisis moves us to expand the boundaries of how we imagine and implement what it means to be in community. For lupus warriors, especially, but for each and every being that is a part of creation, may it be so.
~ Javon Bracy