5 ms·

I read on Twitter an anecdote about someone who couldn’t get a monkeypox test because she is not a gay man. In my experience medicine has a lot of blind spots

I read on Twitter an anecdote about someone who couldn’t get a monkeypox test because she is not a gay man. In my experience medicine has a lot of blind spots where they won’t test for things that are considered rare, but it’s possible that it is only considered rare because they’re not testing. I hope monkeypox isn’t one of them. EDIT: The tweet I saw; https://twitter.com/ahandvanish/status/1541214341558636547 https://twitter.com/ahandvanish/status/1541214341558636547

elromulous 4y ago
So basically a repeat of the 80s with HIV/AIDS. As a society, we really don't learn from our mistakes, sigh.
- tekla 4y ago
  What does this mean? HIV/AIDS research had a hard time during the 80's since it was considered EXTREMELY homophobic to ask if a person had a homosexual experience when diagnosed with HIV/AIDS/Kaposi's Sarcoma, which was an issue when tests were extremely limited/unsure of efficacy and the CDC was trying to figure out infection vectors. This was an issue since, while not unique to the gay community, it massively increased the likelyhood of transmission, but it was politically untenable to claim that AIDS could be spread sexually and that anal sex massively increased the changes of transmitting it since it was considered homophobic.
  - gamache 4y ago
    I regret to report that in the 1980's USA, homophobic speech and actions were 100% politically tenable. Reagan didn't mention AIDS publicly until 1987, and the reason for that was definitely not that he wanted to avoid being seen as homophobic.
    - tekla 4y ago
      I regret to inform you that it doesn't address the point. The saunas and baths where gay people convened were mostly in the big cities, the places where the AIDS epidemic were most concentrated due to basic population density. The very places where the message that "you should probably use condoms and have fewer partners due to this new disease that we don't understand yet but are pretty sure is sexually transmitted" was a political death sentence in the cities where the message actually mattered. This doesn't excuse Reagans response or the general homophobic attitude, but lets try to be more historically accurate. There are reasons why Fauci, who used to be hated by the gay community for above reasons, is now considered one of the good guys fighting for the gay community.
  - xadhominemx 4y ago
    It wasn’t because it was considered homophobic to ask. It was because society was so homophobic that it put patients in a tough position to answer, even the in context of a trusted patient-doctor relationship.
  - HWR_14 4y ago
    HIV/AIDS was considered a "gay men only" disease in the early to mid 1980s. I believe they are referencing how among straight men (and women) testing was commonly curtailed because they weren't perceived to be at risk. It wasn't until 1986 that testing of all military recruits became standard.
  - vkou 4y ago
    > HIV/AIDS research had a hard time during the 80's since it was considered EXTREMELY homophobic to ask if a person had a homosexual experience You're confusing the cart and the horse. Homophobia was mainstream, to the point where it was extremely dangerous to honestly answer that you had a homosexual experience.
scythe 4y ago
>someone who couldn’t get a monkeypox test because she is not a gay man. This is bad, of course. But I feel like you buried the lede. Did she have monkeypox? >it’s possible that it is only considered rare because they’re not testing. Unlike COVID-19, monkeypox has frank symptoms (welts) that clearly distinguish it from other diseases. It cannot be mistaken for much else. Therefore, only a certain fraction of cases (the least severe) are even candidates to be missed, since I find it hard to believe that even the "medically reluctant" would not visit a doctor when they find themselves developing a monkeypox rash. EDIT: to another poster's comparison with AIDS, it's my understanding that the incubation period for monkeypox is not months long as happens with HIV, either.
- cjbgkagh 4y ago
  Here is the tweet I saw; https://twitter.com/ahandvanish/status/1541214341558636547 https://twitter.com/ahandvanish/status/1541214341558636547 It's stated that their whole family has symptoms. I agree, anyone who has symptoms should be able to get a test if available. In the case where not enough tests are available I would prefer a probabilistic approach (e.g. multi-armed bandit).
- zbjornson 4y ago
  On the contrary, it could be easily mistaken for herpes, molluscum, warts, syphilis, acne, insect bites... This outbreak doesn't usually have the severe rash that's characteristic of classic monkeypox.
- RHSeeger 4y ago
  There was a story on NPR a couple days ago where they were talking to a man that had Monkey Pox. He went to the doctor and told him he was pretty certain he had it. The doctor wouldn't even order the test. There was a fair amount more to the story but, if I recall correctly, he had to go to like 4 different doctors to even get one to order the test; and it came back positive. They then went on to discuss it with (someone related to the medical / testing field in some way) who explained that it's very hard to order a test for; something about there being a limited number of labs that can test for it or some such. And doctors needed to justify the test and would likely be on the phone for an hour just to get it ordered. As such, a lot of doctors just... won't, because it's such a commitment of time/effort to do so. Edit: I think this is the story (it was the radio when I encountered it) https://www.npr.org/sections/health-shots/2022/06/25/1107416457/monkeypox-outbreak-in-us https://www.npr.org/sections/health-shots/2022/06/25/1107416... > Providers have to go out of their way to order a test. They have to receive permission and instructions from local or state labs, Nuzzo says. The process is cumbersome and often time-consuming. Sometimes a doctor has to sit on the phone for hours.
treeman79 4y ago
I have a condition where at least 25% of people show negative on the primary blood test. This is well known at top clinics. Lots of other tests exits that show you have it. I’ve had a dozen doctors all declare i definitely don’t have the condition based on negative. Despite having every single symptom and some other blood tests that strongly suggested it. I had to fight like crazy to get the other tests run. All positive. They still didn’t want to diagnose me. So then I had to push hard to start treatment. A Month later I was doing drastically better. Some of stuff you can’t fake. Doctor finally agreed that I probably had it. Every doctor since then loved to try prove I don’t have it by running the initial test. Because 25% chance means 0% chance.
- jondwillis 4y ago
  I think that experiencing medicine as an individual is often so bad because we’re statistics in a harm-reduction macro game. I try to remind myself of that at every negative healthcare interaction, and try to advocate for myself more as I age.
  - treeman79 4y ago
    You have to advocate. And you have to do your own research. I would be dead if I hadn’t. You will also be called a hypochondriac at every single stage if you do any of that. By doctors, by family. Everyone. You will be told endlessly that it’s just anxiety. Family that had been frankly abusive were shocked when I started getting positive results back and responding to treatment. Some of the issues were genetic. So several Members of the family that have been dismissing me went and got tested. They were testing positive for the same conditions and that explained a lot of the weirdness in their life. Also sad to hear how a lot of my relatives died fairly young in horrible agony from same symptoms But everyone just dismissed it. No one thought that maybe it’s all related.
    - kshahkshah 4y ago
      I could not possibly agree more. You must advocate for yourself and your loved ones. My youngest had the fairly rare kawasaki's disease at 4 months old, she went from sleeping through the night at 10 weeks old to not being able to sleep for more than 45 minutes at a time, fully body rash, red eyes, cranky/irritable, and a 104 degree fever. A sick visit to our pediatrician's office resulted in us seeing the other practitioner, not ours, who couldn't figure it out. Recommended antipyretics only at that point, took blood. Still in bad shape, a night or two later we went to a children's ER where all the staff spoke to us like we were overly concerned idiot parents. Finally when we returned to our pediatrician and saw our actual doctor, she near instantly recognized it as Kawasaki's and referred us over to NYU for treatment. Once there, we were admitted to the ER, where my daughter and I stayed the entire night w/o any real help (triage). The following morning after I left and my wife took over, they came to put a line in her and start treatment (intravenous immunoglobulins [IVIg]) but "couldn't put a line in" because she had been "stuck too many times". So they recommended SEDATING HER AND PUTTING A LINE IN THROUGH HER HEART (sorry for the emphasis, I'm still mad). My wife, on little sleep called me to tell me all this and I refused the procedure. I said "no, what you're going to do is get the best phlebotomist at the hospital to put a normal line in her". They argued but eventually got someone and twenty minutes later I got a text saying they put a line in her from my wife. I mean... c'mon. The following day when I returned there were 3 doctors who were in some way I believe following my daughter's case. One of them insisted on a secondary treatment, the other two said we could go home. I asked the one doctor a series of questions which he effectively dismissed and told me to just do what he was asking. The other two on the other hand answered my questions (e.g): * if the disease comes back, will it present with the same symptoms * if the disease comes back, when will it come back, what is the median time * are their studies on recurrence of the disease etc. etc. long list I can't remember. I contacted UC San Diego, where they study Kawasaki's. Read papers, got papers in Japanese which I forwarded over to this pair of doctors who entertained my questions. They translated the papers, read them, told me the findings within. I took her home that day. I don't deal with medical "professionals" who dismiss you. Glad you didn't either.

elromulous 4y ago

So basically a repeat of the 80s with HIV/AIDS. As a society, we really don't learn from our mistakes, sigh.

tekla 4y ago
What does this mean? HIV/AIDS research had a hard time during the 80's since it was considered EXTREMELY homophobic to ask if a person had a homosexual experience when diagnosed with HIV/AIDS/Kaposi's Sarcoma, which was an issue when tests were extremely limited/unsure of efficacy and the CDC was trying to figure out infection vectors. This was an issue since, while not unique to the gay community, it massively increased the likelyhood of transmission, but it was politically untenable to claim that AIDS could be spread sexually and that anal sex massively increased the changes of transmitting it since it was considered homophobic.
- gamache 4y ago
  I regret to report that in the 1980's USA, homophobic speech and actions were 100% politically tenable. Reagan didn't mention AIDS publicly until 1987, and the reason for that was definitely not that he wanted to avoid being seen as homophobic.
  - tekla 4y ago
    I regret to inform you that it doesn't address the point. The saunas and baths where gay people convened were mostly in the big cities, the places where the AIDS epidemic were most concentrated due to basic population density. The very places where the message that "you should probably use condoms and have fewer partners due to this new disease that we don't understand yet but are pretty sure is sexually transmitted" was a political death sentence in the cities where the message actually mattered. This doesn't excuse Reagans response or the general homophobic attitude, but lets try to be more historically accurate. There are reasons why Fauci, who used to be hated by the gay community for above reasons, is now considered one of the good guys fighting for the gay community.
- xadhominemx 4y ago
  It wasn’t because it was considered homophobic to ask. It was because society was so homophobic that it put patients in a tough position to answer, even the in context of a trusted patient-doctor relationship.
- HWR_14 4y ago
  HIV/AIDS was considered a "gay men only" disease in the early to mid 1980s. I believe they are referencing how among straight men (and women) testing was commonly curtailed because they weren't perceived to be at risk. It wasn't until 1986 that testing of all military recruits became standard.
- vkou 4y ago
  > HIV/AIDS research had a hard time during the 80's since it was considered EXTREMELY homophobic to ask if a person had a homosexual experience You're confusing the cart and the horse. Homophobia was mainstream, to the point where it was extremely dangerous to honestly answer that you had a homosexual experience.

scythe 4y ago

>someone who couldn’t get a monkeypox test because she is not a gay man. This is bad, of course. But I feel like you buried the lede. Did she have monkeypox? >it’s possible that it is only considered rare because they’re not testing. Unlike COVID-19, monkeypox has frank symptoms (welts) that clearly distinguish it from other diseases. It cannot be mistaken for much else. Therefore, only a certain fraction of cases (the least severe) are even candidates to be missed, since I find it hard to believe that even the "medically reluctant" would not visit a doctor when they find themselves developing a monkeypox rash. EDIT: to another poster's comparison with AIDS, it's my understanding that the incubation period for monkeypox is not months long as happens with HIV, either.

cjbgkagh 4y ago
Here is the tweet I saw; https://twitter.com/ahandvanish/status/1541214341558636547 https://twitter.com/ahandvanish/status/1541214341558636547 It's stated that their whole family has symptoms. I agree, anyone who has symptoms should be able to get a test if available. In the case where not enough tests are available I would prefer a probabilistic approach (e.g. multi-armed bandit).
zbjornson 4y ago
On the contrary, it could be easily mistaken for herpes, molluscum, warts, syphilis, acne, insect bites... This outbreak doesn't usually have the severe rash that's characteristic of classic monkeypox.
RHSeeger 4y ago
There was a story on NPR a couple days ago where they were talking to a man that had Monkey Pox. He went to the doctor and told him he was pretty certain he had it. The doctor wouldn't even order the test. There was a fair amount more to the story but, if I recall correctly, he had to go to like 4 different doctors to even get one to order the test; and it came back positive. They then went on to discuss it with (someone related to the medical / testing field in some way) who explained that it's very hard to order a test for; something about there being a limited number of labs that can test for it or some such. And doctors needed to justify the test and would likely be on the phone for an hour just to get it ordered. As such, a lot of doctors just... won't, because it's such a commitment of time/effort to do so. Edit: I think this is the story (it was the radio when I encountered it) https://www.npr.org/sections/health-shots/2022/06/25/1107416457/monkeypox-outbreak-in-us https://www.npr.org/sections/health-shots/2022/06/25/1107416... > Providers have to go out of their way to order a test. They have to receive permission and instructions from local or state labs, Nuzzo says. The process is cumbersome and often time-consuming. Sometimes a doctor has to sit on the phone for hours.

treeman79 4y ago

I have a condition where at least 25% of people show negative on the primary blood test. This is well known at top clinics. Lots of other tests exits that show you have it. I’ve had a dozen doctors all declare i definitely don’t have the condition based on negative. Despite having every single symptom and some other blood tests that strongly suggested it. I had to fight like crazy to get the other tests run. All positive. They still didn’t want to diagnose me. So then I had to push hard to start treatment. A Month later I was doing drastically better. Some of stuff you can’t fake. Doctor finally agreed that I probably had it. Every doctor since then loved to try prove I don’t have it by running the initial test. Because 25% chance means 0% chance.

jondwillis 4y ago
I think that experiencing medicine as an individual is often so bad because we’re statistics in a harm-reduction macro game. I try to remind myself of that at every negative healthcare interaction, and try to advocate for myself more as I age.
- treeman79 4y ago
  You have to advocate. And you have to do your own research. I would be dead if I hadn’t. You will also be called a hypochondriac at every single stage if you do any of that. By doctors, by family. Everyone. You will be told endlessly that it’s just anxiety. Family that had been frankly abusive were shocked when I started getting positive results back and responding to treatment. Some of the issues were genetic. So several Members of the family that have been dismissing me went and got tested. They were testing positive for the same conditions and that explained a lot of the weirdness in their life. Also sad to hear how a lot of my relatives died fairly young in horrible agony from same symptoms But everyone just dismissed it. No one thought that maybe it’s all related.
  - kshahkshah 4y ago
    I could not possibly agree more. You must advocate for yourself and your loved ones. My youngest had the fairly rare kawasaki's disease at 4 months old, she went from sleeping through the night at 10 weeks old to not being able to sleep for more than 45 minutes at a time, fully body rash, red eyes, cranky/irritable, and a 104 degree fever. A sick visit to our pediatrician's office resulted in us seeing the other practitioner, not ours, who couldn't figure it out. Recommended antipyretics only at that point, took blood. Still in bad shape, a night or two later we went to a children's ER where all the staff spoke to us like we were overly concerned idiot parents. Finally when we returned to our pediatrician and saw our actual doctor, she near instantly recognized it as Kawasaki's and referred us over to NYU for treatment. Once there, we were admitted to the ER, where my daughter and I stayed the entire night w/o any real help (triage). The following morning after I left and my wife took over, they came to put a line in her and start treatment (intravenous immunoglobulins [IVIg]) but "couldn't put a line in" because she had been "stuck too many times". So they recommended SEDATING HER AND PUTTING A LINE IN THROUGH HER HEART (sorry for the emphasis, I'm still mad). My wife, on little sleep called me to tell me all this and I refused the procedure. I said "no, what you're going to do is get the best phlebotomist at the hospital to put a normal line in her". They argued but eventually got someone and twenty minutes later I got a text saying they put a line in her from my wife. I mean... c'mon. The following day when I returned there were 3 doctors who were in some way I believe following my daughter's case. One of them insisted on a secondary treatment, the other two said we could go home. I asked the one doctor a series of questions which he effectively dismissed and told me to just do what he was asking. The other two on the other hand answered my questions (e.g): * if the disease comes back, will it present with the same symptoms * if the disease comes back, when will it come back, what is the median time * are their studies on recurrence of the disease etc. etc. long list I can't remember. I contacted UC San Diego, where they study Kawasaki's. Read papers, got papers in Japanese which I forwarded over to this pair of doctors who entertained my questions. They translated the papers, read them, told me the findings within. I took her home that day. I don't deal with medical "professionals" who dismiss you. Glad you didn't either.