I woke up in a panic the other morning. I immediately shot out of bed, went to the bathroom and grabbed my prescription bottle from the cabinet. I poured its contents onto the counter and started counting.
I wasn’t looking to get high or escape. I was contemplating when my prescription would run out and my health would start to decline.
I have lupus, an incurable autoimmune disease. I look like a perfectly healthy woman on the outside; on the inside, my body is engaged in a full-out battle. Lupus can affect any part of the body at any time — organs, bones, blood, brain, central nervous system. I already suffer from extreme bone pain that is hard to escape when my lupus flares. My lungs have been so inflamed that a walk up two stairs leaves me breathless. I have been in so much pain that I have lost out on work.
When my condition is at its worst, editors have read my writing and asked, “What happened?” My cognition’s been so off that my writing’s turned to gibberish, and I couldn’t see it until later when the disease had calmed. I have canceled so many plans with friends, been afraid to take vacations, been unable to exercise, even unable to shower. I have cried countless times under the hot stream of water because I was unable to lift my arms to wash my hair.
“I have lupus, an incurable autoimmune disease. I look like a perfectly healthy woman on the outside; on the inside, my body is engaged in a full-out battle.”
I take hydroxychloroquine daily to calm this fight. The drug works. Without it, my organs would eventually be destroyed. I would suffer extreme fatigue, in which the thought of spending energy on chewing food becomes too much. My risk for a heart attack would rise far above the 50% increase I already have simply from living with lupus. The chances of my kidneys being wrecked from the disease would increase exponentially. The pleurisy, inflammation in my lungs, that made breathing painful when I was first diagnosed could return as pneumonitis.
Right now, in the midst of the coronavirus pandemic, the world is in a state of chaos. People are hoarding toilet paper and emptying grocery shelves full of food.
In just these two small examples, I can already think of the victims of this panic. The grandmother who only has a ride to the store once every week. She’s out of toilet paper and there’s none to be found. Now what? The person living paycheck to paycheck who only has enough money to buy groceries for the week and couldn’t overstock their cabinets like others more fortunate. Or those using food stamps who find out that on the first of the month, when they can replenish their cabinets, there’s nothing there.
Then there’s me: the victim of the shortage of my life-saving drug.
Plaquenil, or hydroxychloroquine in its generic form, was touted by President Donald Trump as a possible treatment for COVID-19. There have been few trials and only anecdotal evidence that the drug works for that purpose. Even so, doctors have been prescribing it to friends, family and other loved ones in a “just in case” manner. Kaiser Permanente announced in a letter that it wouldn’t fill prescriptions for lupus patients, asserting that patients could make it 40 days without their drugs.
No one is talking about the consequences of this hoarding and withholding. They will be dire. I can tell you that when I have forgotten to take my drug for a night or two, I feel the effects. There’s no way I could make it 40 days without it taking a serious and life-threatening toll on my life.
It’s easy to forget about people like me because often, our symptoms are invisible. Do you know when someone’s in kidney failure? Or when the inflammation in their lungs is so bad that they become out of breath talking on the phone? No, you wouldn’t. Not if you saw me sitting at my desk.
Part of me likes it like this. If I choose to, I can hide my illness. That is often a blessing and a curse. I don’t have to reveal my health status if I don’t want to; no stranger has ever asked what happened to me. Yet, this is also a curse. “But you don’t look sick,” people say. And I want to tell them I am sick. And I am scared. And I am worried that I and the estimated 1.5 million people in the U.S. who live with lupus will be left behind.
We will be victims of this crisis for sure, whether we end up with the novel coronavirus or not.
“I take hydroxychloroquine daily to calm my fight with lupus. The drug works. Without it, my organs would eventually be destroyed.”
I have been locked in my house for nearly three weeks now. I am scared to death to go outside. I am already in the high-risk category for COVID-19. Take away my drug and I don’t know what happens. Is there such a thing as double high risk?
Since the president is relying on anecdotal evidence to shout this drug’s praises, maybe I can just resort to the vocab of my playground years and say I’m super-duper high-risk now. But what good does that do?
In many ways, I feel like I am just presumed to be a sacrifice for the greater good, and this is what angers me. Am I now somehow less than because I have a preexisting condition that is well-managed under drugs, but now that there’s a possibility those drugs could work for the bigger population, too bad? Sorry. Game over for you.
I’m not willing to take that answer. I want to fight this. I want to stand up for my rights and the rights of so many others. I want this to be the cure, I do, but I don’t want us to forget what happens if we leave people like me behind. I want everyone to slow down and stop panicking. I want us all to consider the faceless victims of every single one of the choices we make.
I am lucky that I have pills left, but eventually, they will run out — and then what? The Lupus Foundation of America has reached out to Congress and the pharmaceutical industry for help, but the help isn’t coming fast enough. Some states have outlawed prescriptions that are not for existing lupus patients like me, but still, I have plenty of friends who are completely out of their drugs.
I know what the future holds for them. I know how bad this can get. Decades ago, before the discovery that hydroxychloroquine could slow the progression of lupus, life expectancy was low for those of us who had it. People died at a young age. One of my favorite authors, Flannery O’Connor, died from it at the age of 39. I think about this every time I sit down to write another story.
I am not ready to die. I still have far more tales to tell, books to write and battles to fight. I am not giving up.
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