Don’t Thank Me for My Sacrifice

After nearly two years of struggling through a lupus flare, I can’t get my hands on hydroxychloroquine, a drug that helps keep me alive.

Image description: The author’s collection of pill bottles, including hydroxychloroquine

hank you for your “sacrifice,” a woman with SLE (Systemic Lupus Erythematosus) was told by her doctor after attempting to get a routine prescription refill last March. Her story was reported in a Buzzfeed News article. Reading it sent me into a panic. That’s because the medication she needed was hydroxychloroquine, the same one I’ve taken almost every day of my life since being diagnosed with SLE, aka lupus, over a decade ago. It’s an antimalarial drug that doctors give to patients with lupus and other rheumatic diseases because it helps suppress immune systems that attack healthy organs.

Closing my laptop on the article, I rushed to my kitchen table and tore open the packages of meds I received from Kaiser a few days earlier. I didn’t open them immediately because I trusted my health care providers. I was also in a whirlwind of finishing instruction for one academic term and moving all my materials online for the start of another one. Plus, I hadn’t received a message like the one embedded in the Buzzfeed article. In fact, I had no communication of any kind — not from my specialist, primary care physician or pharmacist. All I got were messages from Kaiser telling me to do such things as “eat well” and “keep that human connection.” None of these were helpful to me when I rummaged through the delivery — my lupus takes a lot of medication to contain — discovering that I was missing the hydroxychloroquine. I tried telling myself that there would be another delivery, but I also checked every single one of my containers, gathering up every pill and then counting them with fingers sweaty from nerves.

And that was how I learned from a Buzzfeed article that I might be in danger of having to survive without a medication that’s key to the management of my disease.

Just five days earlier everything looked rosier. I woke up to a story of Trump pronouncing hydroxychloroquine, and chloroquine, as “game changer[s]” in the treatment of COVID-19. Though normally mistrustful of his statements, which I get in second-hand snippets, I welcomed the news with cautious enthusiasm, assuming he was relaying recommendations by medical experts. Maybe that’s why I haven’t gotten sick, I thought before looking into the dose administered in the French study behind Trump’s claims. I also naively thought this development was neat. Maybe my little drug, that comes with all kinds of risks and side-effects, could save people from dying in a global pandemic. My partner was more dubious but also immediately concerned with drug supplies. “You should order refills immediately,” he said, anticipating shortages. But, for once, I was ahead of the game. The moment my employer directed us to work from home, I ordered refills on all my medications.

I’m still waiting for the hydroxychloroquine to arrive.

And that was how I learned from a Buzzfeed article that I might be in danger of having to survive without a medication that’s key to the management of my disease.

Rationing pills is not new to me. When I lost health insurance, I tried to carry on by “extending” my supply without the guidance of a rheumatologist. Some medications work very quickly while others take months to build up in the system. This is what doctors told me in the past, asking me to be patient even when my knuckles swelled up from inflammation to the point where I thought my skin would crack. But my doctors also told me to never skip doses.

When it comes to chronic illness, maintenance is crucial. This means taking medicine with regularity, despite erratic work schedules and other life complications. In some chronic illness communities, there’s even special attention to promoting the routine. For example, I follow a Twitter account called @Lupuschat which sends multiple daily, bilingual reminders to take medications, complete with eye-catching dancing pills. This is a service I appreciate; it has the practical purpose of reminding forgetful people like me and it normalizes the taking of medication in a culture that can be viciously “pill-shaming” toward those who lack other treatment options.

In general, I’m vehemently critical of the pharmaceutical industry, which is driven by profit, not patient needs. I’m also aware of the fact that when I start skipping doses or cutting pills into twos, threes, or fours, I get sick. I’ve experimented with this enough, trust me. When, seven years ago, I found myself without health coverage and medications, I ended up in the emergency room, unable to take a full breath. Lying in a hospital bed, I blamed myself, feeling I had failed to secure a job that would provide me with insurance. Poverty and unemployment are considered to be moral failings in a culture shaped by the Protestant work ethic.

For most of my life in the US, the very idea of universal health care was dismissed as being impractical and entitled. Despite seeing through the inhumanity of such thinking, I still internalized the idea that one had to deserve health care through certain types of work. We’ve made some strides in dismantling this notion but even the current Democratic frontrunner considers Medicare for All to be a “pie in the sky” proposal, which is why affordable health care will continue to be tied to employment.

But even in my currently privileged position of having fairly comprehensive health care through my employer, I’m once again finding myself getting the short end of the stick in our medical industrial complex. When asking my health care provider multiple times to help me obtain hydroxychloroquine, I was told to wait and be cognizant of the nationwide shortage. But I didn’t know how I could be more cognizant. I read every news story and opinion piece on the issue, even an expose on doctors hoarding the drug for family, friends and themselves. According to a recent story in the New York Times, “[m]ore than 40,000 health care professionals were first-time prescribers of the drugs in March.” In an average month, a gastroenterologist will issue 373 prescriptions for antimalarials. In March, that number jumped up to 7,197. Other doctors prescribing the drugs at unusual rates include endocrinologists, cardiologists and neurologists. Per the report, even plastic surgeons and psychiatrists wrote a record number of prescriptions for a drug that has nothing to do with their specializations.

So much for talk of resource scarcity and distributive justice.

So much for primum non nocere — “first, do no harm.”

A problem, from the beginning, has been a lack of evidence for Trump’s claim that hydroxychloroquine was a silver bullet for COVID-19. The FDA questioned its potential from the start, arguing for more testing. The only large nationwide study in the US has revealed that “There were more deaths among those given hydroxychloroquine versus standard care.” In fact, the study only found adverse side-effects, “including altering the heartbeat in a way that could lead to sudden death.” There are other well-known risks associated with the drug, such as retinal toxicity, with the possible outcome of blindness. This is why my eyes are tested by an opthamologist every year, a practice so important that you can see a note about it on my pill bottle (pictured). For context, I take half the dose of the drug administered in the French study.

I am not, by any means, against the continued testing. I also can’t help but note that there are currently “142 trials that have been registered in various national and international databases” involving chloroquine or hydroxychloroquine, alone or together with other drugs, for the treatment of COVID-19. On the other hand, according to rheumatologist Laurent Arnaud, there have only been 7 randomized controlled studies for hydroxychloroquine, ever.

So much for talk of resource scarcity and distributive justice.

So much for primum non nocere — “first, do no harm.”

The lack of interest is lupus is not exactly shocking. This incurable condition, historically considered “a women’s disease” (only 10% of those diagnosed identify as men) is “two to three times more prevalent among women of color” and “affects 1 in 537 young African American women.” Given the well-documented race and gender-based disparities in medical research and care in the US, it’s normal for people with lupus to go years without diagnosis or treatment, a situation that can result in life-threatening complications. Added to this, lupus is considered a rare disease, found in about 5 million people worldwide. The rarity, too, has been used to justify the lack of research and public awareness.

Very few drugs have been developed specifically for lupus. Consider, for example, the fact that belimumab, approved by the FDA in 2011, was the first new lupus drug to appear on the market in 50 years. That’s why we take antimalarials, organ transplant drugs, chemotherapy drugs and steroids. In over a decade of living with lupus, I’ve tried all of the above. These medications are hard on the body. I wish we had better ones. I also wish that we had a more holistic approach to care. The present reality though is that survival, for me, means putting up with the dangers and discomforts. Hydroxychloroquine is not even a miracle drug for lupus, but doctors recommend that patients take it their entire lives.

I, like many others living with lupus, take hydroxychloroquine as part of a carefully crafted cocktail. When we run out of a medication, or it simply stops having the desired effect, we can lapse into a flare. A patient is said to be in a flare when symptoms become acute, presenting serious problems for everyday life. My most recent flare lasted for almost two years. Multiple specialists worked to determine the nature of the problem and devised, through trial and error, a combination of meds that brought me to something like a “stable” condition. Before they succeeded, I spent many sleepless nights in fever and pain. I took the elevator because walking up even one flight of stairs was too painful on my joints. When teaching, I engaged in an inelegant dance of moving and sitting so that my limbs wouldn’t become stiff from arthritis. On a number of occasions, I had my partner drive me up to the building where I needed to be, because walking was that painful and tiring. The physical problems came with psychological duress. I learned that the fevers and pains were an indicator that I had inflammation in my kidneys. My diagnosis had changed from SLE to Lupus Nephritis and I had to accept that I now had two forms of lupus.

As my symptoms calmed, I slipped into a period of maybe 6 months of stability. Then Coronavirus came to my part of the world. After two years of fearing what damage my body could do to itself, I found myself terrified to leave my house. Like many other folks living with chronic illness and disability, I don’t feel safe right now. For most of the lockdown, I haven’t had masks or gloves. And I’ve lived with uncertainty about access to one of the medications that keeps me functioning.

“Thank you for your sacrifice,” is a phrase we hear a lot in the US. I’m not a fan of such words because they romanticize danger and exploitation. This is currently the language used to justify medical professionals and essential workers going without PPE. Rather than more protection, sick leave and hazard pay, these workers get thanks, applause and the label “hero.” But as one grocery store worker writes, such gestures primarily express the “wish to gain something — money, goods, a clean conscience — from my jeopardization.” The other people currently jeopardized include the elderly and the disabled. The lieutenant governor of Texas clearly communicated his priorities when he insinuated that it was worse to “sacrifice the country,” by which he meant the economy, than to sacrifice old people. Brian Kemp, who has just announced his plan to reopen Georgia, has suggested that those who are immunocompromised simply do not matter. Low priority and high risk is a combination that’s bitterly familiar to members of disabled communities. As activist Alice Wong writes, in times of crisis, those who are the most vulnerable also find themselves perceived to be the most “expendable.” Eugenics is deeply embedded in our culture, shaping our life trajectories and spans, but it’s in times of disaster that it becomes undeniable, at least to some of us.

“Thank you for your sacrifice,” is a phrase we hear a lot in the US. I’m not a fan of such words because they romanticize danger and exploitation.

I’m far from being the most vulnerable in this crisis. Unlike many others, I have the privilege of working from home. I continue to have health coverage even though I currently avoid going into medical centers for routine appointments and labs. I have to take every precaution to evade infection. This means that I don’t know the state of my chronic illness. I’m told by well meaning people that I should advocate for myself and demand that I get my meds. What they’re forgetting is that advocating for myself is something I’ve had to do since my diagnosis. I’m tired of advocating, taking risks and waiting to find out where I come out at the end of this public health experiment. All I want right now is to receive my medication.

This is why if anyone tries to say “thank you for your sacrifice” to me, I will only have one thing to reply: You are not welcome.

FURTHER READING (in no particular order)

Olga Lucia Torres, “Trump Keeps Putting the Lives of Lupus Patients at Risk”

Alice Wong, “I’m disabled and need a ventilator to live. Am I expendable during this pandemic?

Zipporah Arielle, “Please Stop Treating Me Like I’m Disposable When You Talk About The Coronavirus”

Imani Barbarin, “Coronavirus made accessibility a priority. It should stay that way when the pandemic ends.

Ari Ne’eman, “I Will Not Apologize for My Needs”

Robin Wright, “Who Is “Worthy”? Deaf-Blind People Fear That Doctors Won’t Save Them from the Coronavirus”

I write about adjuncting, chronic illness and whatever else strikes my fancy or makes my blood boil. More:

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