What Do We Have to Lose?

- By Valery Glod-Gransewicz

Painting: “I am Joy” by Omileye Achikeobi-Lewis. Part of the Peace Am I series.

Three days into my own family’s version of self-quarantining, I began seeing headlines claiming the drug hydroxychloroquine (Plaquenil) might lessen the effects and viral load of COVID-19. Plaquenil is the most commonly prescribed drug for Lupus patients. Lupus is a chronic, auto-immune disease with the potential to impact multiple organ systems. While I haven’t personally required Plaquenil to keep my own Lupus under control since 2008, I’m more than familiar with the drug and know several people whose daily functioning hinges on their access to it. In short order, I began seeing posts on my virtual lupus support groups (e.g., LupusChick.com); they were sharing stories of pharmacies unable to fill prescriptions for Plaquenil, or the drug being on backorder. I then saw Trump’s March 19 press conference, where he repeatedly undermined Dr. Anthony Fauci’s advice to be cautious about advocating the effectiveness of Plaquenil for COVID-19—Fauci insisted “the science is not there yet.” At one point, Trump even said, “What do we have to lose?” Perhaps a more appropriate question: Who do we have to lose?

For folks who may not know, 90% of adults with Lupus are women and Lupus is three times more prevalent among women of color. Research has shown that, for people with Lupus, living in poverty is predictive of poorer disease outcomes. As a white woman living with this disease, I have become conscious of the privilege that my whiteness as well as my access to quality healthcare has provided me in my own journey with managing flares. For many women living with Lupus, multiple forces—compounded systems of inequality, such as economic oppression, systemic racism and sexism—are actively working to keep their voices muted, bodies devalued, and agency limited. Intersectional oppression is a powerful reality.

Such untold stories, the weave of multiple social, economic, and political threads that determine who these women are and the ways in which this current moment is impacting their heath, have been crowding into my consciousness. The notion that certain stories are purposefully left out and erased from historical narrative is hardly a new one. Rational people already know that, as a result of this crisis, disenfranchised and oppressed groups will fare significantly worse. What I can offer is a glimpse into some of these stories: women who are deeply threatened by the country’s frenetic and obsessive call to hoard Plaquenil in order to treat COVID-19 patients. I can help answer our President’s question, “What do we have to lose?”

As a woman living with Lupus for the past 20 years, this conversation has been particularly triggering. Since the Plaquenil buzz began, I have been thinking of the faces and the voices of women with Lupus I’ve known over the years, from college acquaintances to a cousin who, like me, was diagnosed as a teenager. Louder still are the voices I know are out there and are not being heard. Stories of women unable to fill their life saving medications, of women working in industries or living in communities that put them at high risk of exposure to this new virus. Stories of women who, like me, are also mothers, for whom the fear of contracting this virus sparks a particularly vulnerable and powerful nerve impulse, an electric anxiety.

Thanks to the invaluable connectivity provided by social media, and in particular to the good work and advocacy of Marisa Zeppieri, a journalist and founder of the NY based nonprofit LupusChick.com, I have been able to connect with several women who want to share their stories. As you read truncated versions of their stories, please imagine a fuller tapestry—thousands of threads interwoven, with ever richer layers of depth and pigment. And then consider as well the stories we have yet to read, to hear, to imagine, in all of their complexity.

I am a 42-year-old white woman and have been taking Plaquenil since 2016, when I was originally diagnosed with Lupus. It helps to control my flares and has been like a miracle drug for me. My most problematic symptoms include severe muscle and joint pain, hair loss and anemia. Having a pharmacy deny my emergency-ordered refill because “other people need it more and [I] still have some” makes me feel like my life is less valuable, because my illness is invisible.

I’m 46-year-old single mother of two grown children. I’ve had lupus for 14 years and was hospitalized last year. I’m a special education teacher and stress isn’t helping. I can’t take generic Plaquenil either.

I’m a 35-year-old woman living in New Jersey. I take Plaquenil for Lupus. My heart and lungs bear the brunt of the disease, but a few months ago, tests showed signs that my kidneys were being affected as well. I’ve found a Plaquenil dosage that works best for me and after years of pain and illness, I am finally feeling somewhat normal again. I have less than 3 months worth of Plaquenil left and my pharmacy won’t refill early for me. I am so scared to go back to that misery. During this pandemic, I often hear “don’t worry, Covid-19 is worse for the elderly and people with compromised immune systems.” It seems like my being at risk doesn’t matter and neither does withholding my medication from me. I feel like I’m not seen as a human being. And when, without my medication, I start getting sick again, I won’t feel like I’m one anymore either.

I am a 43-year-old Haitian American single mom of 2 teen boys. I have been on Plaquenil for 11 years for my Lupus and have had serious kidney failure as well as hospitalization. For the past three days, I can’t find a local pharmacy in Michigan to fill my Plaquenil. I’ve tried four places. I’m terrified of what a flare might mean for me and my family right now, and of what would happen if I needed to be hospitalized.

I realize that we live in a time of alternative facts and flat-out science denial. And I don’t assume that such ideological biases will go away, despite the ongoing global pandemic and public health crisis. The current crisis, however, only increases the necessity to advocate and inform on behalf of the hundreds of thousands of people living with rheumatic and autoimmune diseases—people whose livelihoods depend on their access to these antimalarial medications. The potential misappropriation of these drugs has increased the vulnerability of others overnight. Health care should never be an either/or. These are the stories, the voices, we will lose, if we do not take specific measures to protect the lives these medications are already saving.

VALERY GLOD-GRANSEWICZ is a special education administrator in the Boston suburbs. She is a SEED leader in her schools and community and a mother of toddler twins.