POZ Community Forums
Main Forums => Living With HIV => Topic started by: MarkB on April 14, 2010, 08:53:50 am
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Two recent incidents serve to underline my pariah status as a person with HIV.
I met up with a friend I have known for over 25 years. We had always been quite close, and the previous time we met I had told him about my diagnosis. On this occasion he was more distant, cooler, skilfully but unobtrusively avoiding physical contact. So I confronted him with the change in behaviour. It transpired that at some point after our last meeting (at the end of which we had hugged) he had himself tested. And his wife. Why? Said I. Well, says he, you could have had a scratch on your hand or something ... I told him that if my physical presence was that much of a concern to him then it was probably best if we didn't meet again. Don't forget, says he, we're always here for you if you need us.
Yesterday I went to my GP because of a protracted bout of diarrhoea. What do you want me to do about it? she said, not entirely kindly; You need to go to your HIV clinic. I pointed out that (a) people with HIV can actually have illnesses which are not HIV-related; and (b) my clinic is 6 hours' travel away. So she agreed to submit a sample for testing "just in case" (in case it wasn't HIV-related, presumably). She put it in a bag with my name and address on it, together with HIV POSITIVE- BIOHAZARD! which she then gave to the receptionist for despatch to the local hospital.
All I need now to complete my leper image is a bell to announce my presence.
:(
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Hi Mark,
I understand exactly where you're coming from. I have had that happen as well. I really wish HIV neg people would educate themselves more. As if don't have enough to worry about as it is, having ignorant people around does not help the mood. Hang in there man.
Kev
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Totally awful and understandably disheartening.
Maybe tell your friend he needs a reality check and offer it to him. If he declines, you're right, cut the friendship.
As for the health services, there isnt much you can do but stand up for your right and stare down the prejudiced assholes, which it sounds like you did, so kudos to you.
Strangely, I've had a different experience. I was HIV- for 25 years and often with HIV+ bfs and frank about my lusty ways with doctors and I had to make it clear that since I had safe sex, I didn't need HIV tests for every little or big illness. One time I was in the hospital with HEP A and this doctor came in and said, come on, you must be HIV+, and I said no, and then the bastard took my arm and accused me of being a injection drug user and I said it was the marks from transfusions in that very hospital and threw him out of the room and reported him.
Now that I am HIV+, and my immunity is more or less intact, docs have been good about being rationale about things that have no relation to HIV.
The guy who did my colonoscopy was so cool and said such enouraging things he made my day.
Maybe its because Im on HAART and undetectable so they cant take refuge in HIV as cause/explanation/ reason to not care?
Are you on HAART? It might help to point out to rude or ignorant health workers, if so.
There was another thread a while back, this guy went to the hospital for something and all the nurses were shocked that he was healthy and only took his atripla, once a day. They had never heard of that?????
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I know it is hard not to take reactions like that personally but try to keep in mind your friend's behavior speaks more to his ignorance than you as a person. He probably would be afraid to hug someone who had cancer.
Your doctor's attitude is inexcusable. Find a new one.
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I got a flu shot at Walgreen's (they didn't know I was poz) and they put the needle in a receptacle marked bio-hazard. Shit, piss, sputum and blood, anything that's being handled or transported by others is usually marked bio hazard. It's totally appropriate to mark items HIV+ if others will be coming in contact with it. It would have been marked the same way if you had tuberculosis. Your "friend" well that's another story.
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I got a flu shot at Walgreen's (they didn't know I was poz) and they put the needle in a receptacle marked bio-hazard. Shit, piss, sputum and blood, anything that's being handled or transported by others is usually marked bio hazard. It's totally appropriate to mark items HIV+ if others will be coming in contact with it. It would have been marked the same way if you had tuberculosis. Your "friend" well that's another story.
Exactly. I'd consider anybody's turd sample to be a biohazard. It's not like somebody at a lab will say "Oh, HIV+... better not get any of this one on me".
As for the friend... it's obvious he's ignorant of HIV transmission. Hopefully, he'll bother to learn a bit about it and can be a friend again.
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By the way, as an aside, if i had a EURO for everytime a guy on the gay chat asked me if I was "clean" - thats the word they use in French, chic eh? - I could take a 2 week holiday to a very chic bath resort and be literally very clean, indeed.
Many HIV- people will, I'm afraid, always be a bit gross.
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Anything that comes from >Anyone's< body is considered bio hazard as it is not sterile. So that wasn't really an affront to you.
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Hey Mark,
I do HIV testing, along with other stuff, and when I send a sample to the lab, it is always in a plastic bag marked "Biohazard." even though it is only saliva.
Try not to let this bother you.
As for your friend, I agree, he is probably freaked out about the "idea" of HIV and, at the same time, is ignorant of how it is transmitted.
You would be surprised how ignorant people are about HIV because they believe it will never affect them.
HUGS,
Mark
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If they had put only the word "BIOHAZARD" that should be enough, there's no need to also add "HIV+" to the label. Unless they think one of the technicians at the lab might be into scat and be tempted to smear it all over himself, despite the BIOHAZARD label, and thought he needed a warning about HIV just in case.
I noticed at my doctor's office that the files of people who have diabetes have a sticker on the outside that says "Diabetes" and people don't seem to think it's a big deal. If it said "HIV +" on the files of those with HIV, it might be perceived differently.
I know I like my privacy, whether HIV or any other condition but maybe it would be a sign of progress and less stigma if there comes a day when putting a sticker on someone's file saying "HIV+" is no big deal.
Below is a story about segregation of HIV+ prisoners in Alabama and South Carolina, being contested by the ACLU and Human Rights Watch. This is the kind of discrimination that feeds the fear in people such as the friend that the OP mentions.
Report says HIV inmate segregation in two U.S. states
The 45-page report, "Sentenced to Stigma: Segregation of HIV-Positive Prisoners in Alabama and South Carolina," said prisoners in the HIV units were forced to wear armbands or other indicators of their HIV status and to eat and even worship separately. They were denied equal participation in prison jobs, programs, and re-entry opportunities that facilitate their transition back into society.
LINK:
http://www.reuters.com/article/idUSTRE63D38A20100414
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I think any lab specimen should labled correctly, HIV or otherwise.
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I think any lab specimen should labled correctly, HIV or otherwise.
BIOHAZARD already indicates that the contents are to be handled using universal precautions guidelines; there's absolutely no need to say more than that on a big colorful label. If there is paperwork discretely attached then that's a different matter.
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I worked in labs in the late 80's and throughout the 90's -- NEVER, did we put an HIV sticker on a specimen. The Biohazard bag was appropriate and the only thing required, the HIV sticker, probably would run into some HIPAA violations in the US. No one handling that specimen needs to know it came from someone with HIV -- Universal Precautions dictates that you should treat everything as if it's infectious (HIV or otherwise).
Mike
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I suppose it was the inclusion of my name and address on the bag, rather than the mere identification of my serological status, which upset me. And though I'm no scientist, I did wonder how much risk that precise type of bodily fluid would pose from the perspective of HIV.
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Proper clinical practice doesn't include labelling things as "HIV+" - the biohazard marker is sufficient. Your GP was, at best, quite insensitive.
MtD
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I suppose it was the inclusion of my name and address on the bag, rather than the mere identification of my serological status, which upset me. And though I'm no scientist, I did wonder how much risk that precise type of bodily fluid would pose from the perspective of HIV.
As Bocker states, it's probably a HIPAA violation to add "HIV+" meaning you could file a complaint if you wanted.
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As Bocker states, it's probably a HIPAA violation to add "HIV+" meaning you could file a complaint if you wanted.
I believe Mark is a resident of Her Majesty's United Kingdom of Great Britain and Northern Ireland.
MtD
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I am indeed. And, given where I live, also quite distant from clinics / support groups etc.
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I suppose it was the inclusion of my name and address on the bag, rather than the mere identification of my serological status, which upset me. And though I'm no scientist, I did wonder how much risk that precise type of bodily fluid would pose from the perspective of HIV.
They put your name and address on the bag!!! I'm surprised that they didn't ask you to hand deliver it. Find a new doctor if you can.
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I suppose it was the inclusion of my name and address on the bag, rather than the mere identification of my serological status, which upset me. And though I'm no scientist, I did wonder how much risk that precise type of bodily fluid would pose from the perspective of HIV.
I would be far more upset about the status indicator because, they did need identifying information on the specimen -- so that the lab knew from whom the sample came. I would, however, prefer it on the actual specimen container, rather than the bag -- the container has to leave the bag at some point.
All in all -- you probably should be finding a different doctor.
Mike
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Yeah I think the major glitch is her response "what do you want me to do about it?" to a straightforward patient problem.
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I can't believe people in 2010 still believe you can get HIV from casual contact. Well, I guess I can when people believe Obama is the anti-Christ.
If HIV was transmitted that easiily, everyone would have it. HIV is actually very hard to transmit sexually. If you had SARS, the bird flu, or something, I could understand.
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I would have called the doctor on her insensitivity. Sometimes docs need to be taken down a peg. Everyone is right about the biohazard situation. Heck, even samples vets send out on animals are labled biohazard.
As for your friend, I wouldn't take it personally. I would ring him again and ask to have a conversation about HIV and inform your friend. If he is still weird about it, he is a germaphobe and you don't need that in your life. When I told my heterosexual friends I was poz, I gave them all a lesson. Most were aware of the ways to acquire but not ONE knew what HIV actually does to your body. They had a lot of questions, some that they told me they were afraid to ask a doctor due to stigma. There's the S word again.
I remember very early on in my diagnosis after my friends all knew, I went to a BBQ at one of their homes. On the way there, I stubbed my toe which caused me to bleed. I put pressure on it and it stopped bleeding, this was all done in visibility of the whole party. I refrained from swimming because I was worried that it would cause irrational fears. I saw at one point my friends whispering and I was sure my fears were founded. My friends husband came over and said "I really hope you aren't refraining from the pool on this hot day because of your toe. HIV is not going to live in a pool that is so chlorinated my eyes are stinging!". I felt very silly but appreciated that they cared enough to put my mind at ease.
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I believe Mark is a resident of Her Majesty's United Kingdom of Great Britain and Northern Ireland.
MtD
I should've pointed out that I am a lifelong committed anti-royalist who hopes to live long enough to see the "united kingdom" consigned to the dustbin of history. But that's just me.
;)
On the health issue, it's now been five days since I've been able to keep down food and fluids and I am exhausted. And fed up. ;D I rang the clinic in London yesterday and hope that someone will get back to me today or soon.
Thanks for all your comments.
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Mark
Hope you are starting to feel better. Wouldn't the doctor give you a scrip for loperamide or something?
A
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Hi Assurbanipal
Interestingly, she said that in her view it doesn't matter how long the diarrhoea continues, and that medicating the condition would be "counterproductive". In the meantime I still can't keep solids down and have lost over a stone in weight.
Following comments here I've decided to write to the head of the practice to ask for clarification on two points: firstly, whether they genuinely think that any medical condition affecting me should be dealt with by my London clinic, and if so, why; and secondly, if in the future any samples need to be tested, would it not be sufficient simply to put "biohazard" on the bag, rather than my name, address, and serological status. Round here, 'confidential' is the title of an American police movie ...
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Shit, piss, sputum and blood, anything that's being handled or transported by others is usually marked bio hazard
This is unnecessaey and should be challeneged. Infectious specimens are not allowed to be transported by normal delivery means eg post/courier, and especially for "in-house" (internal mail) systems within healthcare facilities it's a nonsense.
- matt
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Thanks, Matt - that is most helpful, and I will use it in my letter to the head of the practice.
Out here in the sticks, it seems that GPs' knowledge of HIV related issues is firmly rooted in about 1990.
Regards,
Mark
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"Dear X
I am concerned that the labelling of my recent specimen (fecal sample) taken on [date] was a breach of confidentiality. The sample was labelled "HIV POSITIVE- BIOHAZARD!". Inclusion of my HIV antibody positive status disclosed my personal health information to practice staff and others unnecessarily.
Department of Health guidance recommends:
“Anyone responsible for taking and/or dispatching specimens or other potentially hazardous material for laboratory examination has duties under the Health and Safety at Work etc. Act (HSWA) and the COSHH Regulations to conduct the work safely. One specific requirement (covered by Section 3 of the HSWA) is to convey knowledge of known or suspected hazards to those who need to handle any material that is sent for examination, and this may be achieved by inclusion of clinical details on the request form which accompanies the specimen. Such information however is confidential and should not be readable by persons handling the specimen while it is still contained in its packaging. Use of some form of “danger of infection” label; (e.g. a yellow biohazard sticker) is appropriate"
(Supplement to ACDP guidance on protection against blood-borne infections in the workplace: HIV and hepatitis – DH July 2001)
Please would you tell me:
1. Why my specimen was labelled with my HIV antibody status, and "BIOHAZARD!" especially as a fecal sample does not pose a risk of HIV transmission?
2. What you will do to bring practice standards in line with Department of Health guidelines?
Yours etc"
It is reasonable that the lab knew your HIV+ status to ensure they checked for the right kind of possible cause for your liquid poo. However, the receptionist did not need to know, and certainly, this information should not have been readbale by anyone other than the pathologist.
You might like to copy the letter to Deborah Jack, Chief Executive at National AIDS Trust.
- matt
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In your debt, Matt, as ever. I will get the letter off today.
Regards,
Mark
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Footnote
The senior doctor in the practice rang me personally this afternoon. He is scandalised at what has happened and considers that it was totally unacceptable; also that my confidentiality has most definitely been breached. The GP who treated me is to be questioned formally concerning both her attitude to me as a patient and regarding her reasons for labelling the fecal sample as she did (she is currently on holiday). I will receive a written report following that disciplinary meeting. My sense is that the practice senior is afraid that I will take things to a higher level; he has also arranged to transfer my future medical care to his own caseload.
Thanks again to all for advice and support, and especially to Matt for helping me with the letter.
/... edited for typos
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That's so great to hear. It sounds as if the GP basically needs to be educated on the subject. Your actions will help to make sure that someone else with HIV does not have to go through something like this.
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Did this happen without you having to bring it up initially? If so that's very good of them to have noticed. If not they're still getting back to you in a reasonable amount of time. Overall I'd be pretty content with the result.
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I'm sorry this happened, but glad you will be getting a better doctor.
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Result :) (but it's annoying to have to obtain one)
All the best
-matt
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I'm sure I won't be the only one on this board who would say: I couldn't have done it without you, Matt. The information you gave me was what tipped the balance. What I hope is that this will affect for better the way the next HIV+ person is treated.
Regards,
Mark
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Mark,
I'm glad to hear you got a response from the senior Dr so quickly. I'm also looking forward to hearing how the 'disciplinary meeting' goes.
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You would be surprised how ignorant people are about HIV because they believe it will never affect them.
Mark
Mark:
Maybe the cause is the opposite? I believe people try to remain ignorant in order to continue living the illusion that "it" can somehow never reach them. We are "them" and "it" is HIV/AIDS. By treating us as the "other", "dirty"---like the standoffish "friend"---they can convince themselves for one more day of their immortality and immunity from illness.
-Steven (aka 8) megasept)
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Anything that comes from >Anyone's< body is considered bio hazard as it is not sterile. So that wasn't really an affront to you.
Indeed, so why the need to mark it "HIV+ biohazard", and not just "biohazard" ? Is there any risk of transmission to anyone from that poop ? And if not, what purpose does it serve to mark it HIV+ ?
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Indeed, so why the need to mark it "HIV+ biohazard", and not just "biohazard" ? Is there any risk of transmission to anyone from that poop ? And if not, what purpose does it serve to mark it HIV+ ?
I was specifically tlaking about the biohazard portion, marking it HIV is just redundant. Additionally labeling with all of his personal information is just...well rude. I mean who wants a sample of their poop floating around with their name on it. I mean just slap his photo on it while they're at it.
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I was specifically tlaking about the biohazard portion, marking it HIV is just redundant. Additionally labeling with all of his personal information is just...well rude. I mean who wants a sample of their poop floating around with their name on it. I mean just slap his photo on it while they're at it.
The biohazard part doesn't shock me. At the lab where I go, urine bottles and poop bags are always labeled biohazard. I think the bags are even pre-imprinted with it. But never HIV+ !
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I mean who wants a sample of their poop floating around with their name on it.
Well, if I was having my poop tested -- I would want my name on the sample. It is common practice in any lab that I have ever worked at -- how the heck else will you know who's sample is who's???
Don't they stick your name on your blood tube each time you get drawn?? it's really no different.
The biohazard is also common (and in many places required). The HIV+ is overkill and probably would run into privacy issues.
Mike