Abby Mahler
Los Angeles, California
“Like my line that I’ve stuck to the entire time is that it really does not matter whether or not Hydroxycloroquine works for COVID. People who rely on this medication should have unrestricted access and unimpeded access...There is no reason that we should have to sacrifice our health in regular times, let alone a pandemic.”
Ryan Roach: What has your experience been like during the pandemic?
Abby Mahler: Yeah so I definitely found myself in a fairly physically comfortable space where I’m “healthy”, whatever that means for someone with chronic illness, but I don’t have COVID. And I am just kind of staying in my house with my partners, really limiting my interactions outside of here.
Definitely a different kind of world. I guess the most important part that I’ve been up to is focusing on the main drug that people with lupus take including myself which is hydroxychloroquine or Plaquenil and this drug has shown itself a superstar during this pandemic. I have been very involved with the narrative since the beginning which I would argue is mid February where this saga begins. I’ve been pretty tapped into it the whole time because I stay pretty up to date with what is going on with lupus as one with chronic illness does. And as the narrative has kind of curdled and hydroxychloroquine has gone through a pendulum swing of public opinion and has gone in and out of shortage. We are still in shortage now; it’s not nearly as bad as it was in March.
I’ve definitely stayed attached to this and ended up being kind of an ultimate internet reply guy across every platform I can. Trying to make sure our voice is heard in this conversation about our medication. Because it seems to be completely absent with this drug that was originally created as an antimalarial or marketed as such that it is rarely used that way now and is primarily used for autoimmune people. And so watching hydroxychloroquine be presented as this antimalarial that basically usage has no consequences because it’s so common and it’s been around for so long has been really surreal and painful. And being made to feel invisible in a similar way I think a lot of us encounter when we work for diagnosis and for treatment. And it’s a really similar invisibility and yeah to feel it extended to like a global scale is surreal.
RR: What has your experience been like talking online about the shortage of this medication and what kind of responses have you received from the general public?
AM: It’s been bananas. It’s been really all over the map. The positive has generally overwhelmed the negative. But if anything it has been like surprise positivity from most people, because most people don’t know they know an autoimmune person if they do at all. And whether or not that they know their friend or family member is autoimmune, how would they know what medication they’re on? The nuances of this story are so complex that I don’t feel like I can even see the whole picture. But in bringing this aspect of the hydroxychloroquine saga to light I feel as though I’ve gotten mostly positive responses. Like people just did not know this was a problem, that this was a medication for autoimmune people. It seemed very obfuscated for better or for worse.
I’ve also gotten a lot of very strange responses ranging from strange to negative. I’ve gotten harassed by folx that align themselves with Donald Trump and have been accused of being selfish. I’ve been told to sacrifice my medication because it is a cure all for COVID which is blatantly not true. I’ve also encountered what must be bots especially on Facebook but it’s very hard to nail these things down. I’ve gotten all these really weird friend requests and I do have confidence in saying these are not real people. It’s very weird and hard to describe without sounding conspiratorial, but it truly is the most bananas time I’ve had.
Yeah I, I definitely feel like I’ve been doing the right thing when it comes down to it. Like my line that I’ve stuck to the entire time is that it really does not matter whether or not hydroxychloroquine works for COVID. People who rely on this medication should have unrestricted access and unimpeded access I suppose would be a better way to describe it. There is no reason that we should have to sacrifice our health in regular times let alone during a pandemic. And so I just kind of return to that point and sometimes it is heard even like some folx with “MAGA” in their Twitter handles have been like that makes a lot of sense. Yes, yes this is something we can all agree on. Likes so yeah it’s been bananas.