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THREAD: What people don’t understand about diverting #Hydroxychloroquine from #autoimmune ppl is that while lack of meds not kill us directly, it is all but ensuring we will flare. That flare cannot be controlled if we haven’t already stockpiled more meds, like prednisone,
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and even if we have extra steroids lying around (you know, like ya do right?), there is no guarantee that it will put us back into remission without further dosage of our stabilizing medication: #Hydroxychloroquine.
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And if we’re in an unstable flare **in the middle of a pandemic**- even more “at risk” than we were before- and we’re forced to go to the hospital in fear for our lives, that is just one more person burdening a clearly already overwhelmed medical system.
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And those overburdened hospitals are almost definitely teaming with virus, bc there’s no way to clean as fast as it contaminates when we’re reusing PPE. So that means that at-risk #autoimmune people are exposed to the virus, and we’re more like to get *very* sick.
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There have already been reports, from other countries as well as the US, about triaging. The likelihood an otherwise healthy person being chosen for a ventilator, for example, over my autoimmune ass seems pretty clear from where I’m sitting.
5/ http://www.washingtonpost.com/health/2020/03/25/coronavirus-patients-do-not-resucitate
5/ http://www.washingtonpost.com/health/2020/03/25/coronavirus-patients-do-not-resucitate
A version of that choice exists within the diversion of #Hydroxychloroquine as is. Patients w invisible illnesses are, unfortunately, used to it. By not guaranteeing #autoimmune ppl our needed medication you may not be outright killing us, but it’s the first domino to fall.
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There is not enough space in hospitals to contain the amount of #autoimmune people flaring without their meds, and the PRIORITY is to keep people out of hospitals. By keeping us stable, on our meds, at home, the likelihood of one more body in a state of need goes down.
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So whether leaving people without needed #Hydroxychloroquine directly kills us or not, it’s a step in the wrong direction, and we should be ashamed that the conversation is even being had.
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“But Babs these ppl are DYING of COVID! Sacrifice!!!” Why? There is no proof. I want it to work sososo badly. I am afraid of getting this disease too. But I know #Hydroxychloroquine works for me, &, in conjunction w deliberate changes in my life, has kept me stable since ‘17
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There shld be a guaranteed supply of #Hydroxychloroquine to #autoimmune ppl before huge quantities are diverted for a *maybe*, especially when other drugs are on the table.
http://www.nytimes.com/2020/03/22/science/coronavirus-drugs-chloroquine.amp.html
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http://www.nytimes.com/2020/03/22/science/coronavirus-drugs-chloroquine.amp.html
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And yes, this problem of people not being able to obtain their scripts is exacerbated by individual docs prescribing supplies for themselves&others, so this is not an either or situation. Nuance, twitter.
11/ https://www.propublica.org/article/doctors-are-hoarding-unproven-coronavirus-medicine-by-writing-prescriptions-for-themselves-and-their-families
11/ https://www.propublica.org/article/doctors-are-hoarding-unproven-coronavirus-medicine-by-writing-prescriptions-for-themselves-and-their-families
I will not apologize for advocating for my life. It took 10yrs to be dx’d in the 1st place. The plan was, when I got dx’d, take #Hydroxychloroquine 2x/day, every day, for the rest of my life, until smthg better arrives, it threatens my eyesight, or I die. And so I will.
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S/o to @LupusOrg for the good work. #withoutmyHCQ
Also like to be clear: lupus affects women of color at FAR higher rates than any other demographic. If you think race doesn't play into this equation, you're kidding yourself. 13/
