On Wednesday, BuzzFeed News reported that a woman with lupus was unable to refill her hydroxychloroquine prescription because her health care provider was “conserving” the medication for patients diagnosed with the coronavirus (COVID-19), the new-to-humans viral strain in the coronavirus family known for causing symptoms like fever, dry cough and shortness of breath.
“Thank you for the sacrifice you will be making for the sake of those that are critically ill; your sacrifice may actually save lives,” Kaiser Permanente, the woman’s health care provider, told her in a note. “We appreciate your understanding, and you will be notified of any changes in the policy as they happen. We all hope this will be a short-term situation.”
As someone with chronic illness, this situation makes me enraged. For those who don’t know, Hydroxychloroquine (brand name Plaquenil) is a common anti-malaria drug prescribed for people with autoimmune conditions like lupus and rheumatoid arthritis because of its anti-inflammatory properties. Recently, President Donald Trump suggested drugs like Hydroxychloroquine could be “game-changers” in the fight against COVID-19, though there is little evidence to back this up. The woman‘s provider, as well as insurance network, denied her an essential medication because they thought that COVID-19 patients might need it.
And don’t even get me started on the audacity of thanking her for her “sacrifice.” Sacrifice? Really? This is a mockery of our lives. We sacrifice every day in more ways than our providers know. We’ve had to give up so many pieces of our lives such as our appearance, jobs, mobility and diets. Chronic illness does not take a break just because there is a global pandemic going on. Chronic illness warriors still have to go on about our everyday, chronic illness lives…. this includes dealing with our appointments, treatments and of course, our medications.
I am someone with lupus who depends on Hydroxychloroquine. Forcing people like me to forego life-saving treatment is not just morally reprehensible, it puts us (an already high-risk population) even more at risk for COVID-19.
Patients I know with autoimmune conditions have been met with regret at their pharmacies. They have either been told, “Sorry, we are out,” “Sorry, we have a limited supply” or “Sorry, we will fill this medication at all.” Unfortunately, many patients are not being offered suggestions by their doctors for navigating what they should do if they, for example, have a flare after running out of medication.
Recently, I was told my Hydroxychloroquine was on backorder. I had to shuffle pharmacies and eventually I got my meds on time. But this is absolutely not OK. While I have enough medication for the next two months, what will happen after that? Will my doctor stop writing me a prescription? I discussed the situation with my rheumatologist, and luckily, she too is outraged at what physicians and insurance companies are doing and is working with me to make sure I have an adequate supply.
I found one pharmacy that had my medication in stock, but I had to prove I was a lupus patient to even be considered to receive a supply of Hydroxychloroquine. Even then, the pharmacist said he could only give it in seven-day supplies for the next four weeks. So now I have to put my immune-compromised self at risk by going to the pharmacy every week to get this medication filled until my normal pharmacy gets this medication back in stock and can fill my normal 90-day supply.
I pray that is over sooner rather than later. We talk about sacrificing our health so those with an acute illness can survive, but what about the continual sacrifices those of us with chronic illness are already making financially, physically and mentally? We are now in the “who has it worse?” competition and it should not be that way.
When this all said and done, after people are “treated” for COVID-19 with Hydroxychloroquine (if it even works), people without chronic illnesses will go on with life as normal, get discharged from the hospital and maybe never set foot in one as an inpatient ever again. But that is not our luck as chronic illness warriors. We will be on medications like Hydroxychloroquine for the rest of our lives, and probably have many hospital visits in our futures.
So no, don’t deprive me of the medication I need and then thank me for my “sacrifice” — my care is not disposable. We should be able to treat all COVID-19 patients without “sacrificing” anybody. While they deserve accessible and affordable treatment, so do I.
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