Discrimination against PLHIV as big an issue as ever - EU & Ireland

[Jim Allen]

Stigma and discrimination against people with HIV are as big an issue as ever

Full article by aidsmap.com https://www.aidsmap.com/news/oct-2022/stigma-and-discrimination-against-people-hiv-are-big-issue-ever

In Short:

EU - Survey responses from 3272 people with HIV from 54 countries.

Preliminary results from a survey of stigma and discrimination conducted by the European Centre for Disease Prevention and Control (ECDC) show that people living with HIV in Europe are as likely to have experienced stigma in recent years as a decade ago.

The respondents were then asked about whether they had experienced six kinds of negative reactions to their status:

rejection by friends (24% said yes, they had);
threats, or verbal or physical abuse, from a sexual partner (17%);
discriminatory remarks or gossip by their family (16%);
being blackmailed by people they knew (15%);
threats or abuse from their family (11%); and being excluded from family activities (10%).

The survey also asked about experiences of stigma in the healthcare setting.

Experiences of overt discrimination were less common but a third had experienced healthcare staff being discriminatory to others with HIV (11% in the last year), 29% had heard staff making discriminatory remarks or gossiping (9% in the last year) and 23% had experienced reduced or delayed services due to their HIV (7% in the last year). Fifteen per cent had been tested for HIV without their consent, though this seemed to be less common now (3% in the last year).

Irish healthcare workers survey

Dr Vaughan - Vaughan E. Measuring HIV-related stigma in healthcare settings: Lessons from Ireland.

A survey conducted this summer in Ireland gathered 298 responses from a variety of healthcare workers, most of them not HIV specialists (71% said they had had no experience in HIV care).

Among the respondents, 32% were nurses, 23% doctors and 44% were other practitioners such as dietitians and dental hygienists, and also receptionists and administrators.

Eighty per cent said they had received no specific training in HIV stigma and discrimination. Twenty per cent were aware of written workplace guidelines about treating people with HIV, but just as many said they were unaware they could get into trouble if accused of discriminating against people with HIV.

Seventeen per cent said they had never heard of U=U but although this implies that 83% had, 40% still said they would be uncomfortable about taking blood from a person with HIV and 29% dressing a wound.

Thirty-one per cent said they would always wear gloves when treating a person with HIV and 13% double gloves. Twenty-one per cent said they would take other precautions not required by guidelines: a nurse said they would “wear eye protection when drawing blood”, a dental hygienist would “always schedule appointments at the end of the day” and a dietitian would “avoid securing a nasal tube if possible”.

[Jim Allen]

I commented above in brief on this before, but the full report is now out and available for download.  It's an interesting read.

Dr Vaughan - Vaughan E. Measuring HIV-related stigma in healthcare settings: Lessons from Ireland.

https://aran.library.nuigalway.ie/handle/10379/17830

PDF download: https://aran.library.nuigalway.ie/bitstream/handle/10379/17830/HIV%20Stigma%20A4%20Research%20Report_Final.pdf?sequence=5&isAllowed=y

Its 44 pages long but under the survey conducted with 298 healthcare professionals, a few points caught my attention:

Findings from the healthcare worker survey suggest that fear and anxiety about occupational transmission are major drivers of stigma in healthcare settings, with 40% reporting they would worry at least a little about drawing blood, and 29% about dressing a wound of a person living with HIV

.

People get infected with HIV because they engage in irresponsible behaviours

• Agree 11%
• Disagree 89%

I will get into trouble at work if I discriminate against patients living with HIV

• Yes 77%
• No 4%
• Don’t know 19%

How worried would you be about getting HIV if you did the following?

Touched the clothing of a patient with HIV

• Not worried 87%
• A little worried 5%
• Worried 0.7%
• Very worried 0.3%
• Not applicable 7%

Drew blood from a patient living with HIV

• Not worried 37%
• A little worried 28%
• Worried 7%
• Very worried 5%
• Not applicable 23

Do you typically use any of the following measures when providing care or
services for a patient living with HIV?

Special measures you do not use with other patients

• Yes 21%
• No 65%
• Not applicable 14%

Some free text replies:

“Double glove taking bloods” Nurse or Midwife
“End of day appointment” Dental Professional
“Eye wear for blood draw” Nurse or Midwife
“Needle resistant gloves” Doctor
“Double wipe down” Dental Professional
“Would have used gloves when giving the flu vaccine when that would not have been standard” Pharmacy Professional
“They use mouthwash at beginning and end of treatment if not taking PrEP [sic]”Dental professional
“Avoid placing nasal bridles if the situation arose” Allied health professional
“Would schedule patient with HIV at the end of the working day to ensure optimum clean down after treatment” Dental Professional

In addition to the survey with 298, there were interviews conducted with sixteen people.

You do get people that will say ‘Oh that patient has HIV, like make sure to wear two pairs of gloves.’ I’ve heard that being said.
(Male, Doctor)

And maybe this goes back around to our Catholic upbringing and sex, which we don’t talk about. S. E. X. [spells out the word sex]. I think that might be part of it as well. (Female, Clinical Nurse Specialist)

This was the first time, it seemed, that there had ever been an HIV patient needing a biopsy in this facility. And everyone was like ‘What do we need to do? How do we do this? What precautions do we need to take? Should we gown up? Do we double glove for the procedure? How do we send the samples down to the lab? Do we need to let the lab know?’ (Female, Nurse)

I’ve had kind of a teaching role at different points as well with medical students and often, when you mentioned topics such as U=U, people are amazed and they might have gone through four, five years of medicine and never heard of it. (Doctor, Male)

You fill up the needlestick form … and get the bloods done, and out of work for 6 months.Because you’re on PEP, you’re not able to work for quite some time … You can’t share the bathroom. You’re six months separated from spouses. You can’t engage in sexual activity. (Male, Emergency Medical Technician)

A clinical nurse specialist, with specific expertise in PEP was clear that there was absolutely no requirement or rationale for a six month hiatus from work if a course of PEP was required.

[leatherman]

TL;DR
thanks for the link to this report. I enjoyed reading it and had a lot of thoughts. LOL


I love these kinds of reports. Of course, I'm a data guy so this kind of stuff is interesting as hell. It's what I liked about some of my Ryan White work. Numerous times I got a hand in collecting data; and then working on the state level, I got to compile this data and help create these kinds of reports....which was incredibly interesting as they were reports about what was happening in my local area.

As to this report, I found the part describing the types of stigma of great interest. Stigma has been talked about a lot; but as a broad concept, not as the specifics listed in section 1. Stigma sure comes in a lot of flavors.

I was surprised by some answers. While I wasn't happy to read the percentages of those who would discriminate against PLHIV when giving them healthcare, those answers did lend credence to the report with those true answers. It's hard to know that some people are prejudiced against PLHIV, but I would be suspicious with these findings if it had seemed like everyone was hunky-dory with caring for people living with HIV.

People get infected with HIV because they engage in irresponsible behaviours

• Agree 11%
• Disagree 89%

This question though I was have to be in the 11% agreeing. Aren't the two major paths to acquiring HIV (sharing injection needles, having unprotected sexual intercourse) not inherently irresponsible acts in themselves?

If I had a choice I would prefer not to provide services to men who have sex with men

• Agree 2%
• Disagree 98%

while I can't speak for sex workers or migrants, as an older gay man, I think there was some lying on this data point. A lot of straight people just get this quick "twitch" when you mention your same sex partner or disclose your own sexuality. Thankfully most of them shake it off; but you have to wonder how their opinion of you might lead from stigma/prejudice to discrimination and a change in health care. You'll see that same twitch when you mention your HIV status too.

In my personal case, I've always found that civility along with a bold confidence in understanding my own health, treatment and "untransmittability" (sp? LOL)(you know. U=U, not having unprotected sex with my healthcare provider or not having the healthcare provider suck up a vial of my blood and inject it into their veins. LOL) tends to help smooth through any trepidation by a health care provider. Anytime I have to contact a health care provider outside my primary/HIV doctor, I've been thankful for all those health fairs I did. Besides passing out condoms, I talked a lot of HIV 101. Not only did that experience help in peer support and prevention education; but I learned enough to confidently educate health care providers about all things HIV. Facts always combat stigma and discrimination.

The stigma that occurs in these settings is very subtle. The questions asked here are certainly fundamental, but I think there is a great deal that is conveyed in glances between healthcare workers, in certain comments (“are you having a lot of sex”) and so on.

I guess my "feelings" weren't so off base. Seems in the PLHIV free test response section someone else sees the "twitchiness" that I've seen.

Table 15: Responses to questions on healthcare avoidance

Section 5: Qualitative interview findings

well, after reading interviews from patients and providers, it seems a no-brainer to understand why 50ish% of PLHIV worry about health care interactions. Providers seem woefully under-educated about HIV/U=U.

Sadly though the conclusion finds the solution to these issues is not much of anything that PLHIV could do; but almost entirely on the health care profession upping it's game and getting educated.

[Jim Allen]

Yeah, it certainly was an interesting read.

Most stigma studies are about our perceptions, but I liked that this focused on the healthcare providers and how the questions are asked with free text replies. It said a lot and the results confirmed what PLHIV have been saying for years.

This question though I was have to be in the 11% agreeing. Aren't the two major paths to acquiring HIV (sharing injection needles, having unprotected sexual intercourse) not inherently irresponsible acts in themselves?

Yes, however, I would argue or add that nearly the entire population at some stage in their lives have had "potential" HIV risks, even if they don't perceive it as a risk. Particularly the people claiming 100% condom usage and three kids 

Not to mention I would say more than half the people who ask me about their HIV concerns think fucking their wife, friends, neighbours and co-workers is fine without a condom and not a risk, but somehow a finger in the ass from a sex worker is a concern 

[leatherman]

Yes, however, I would argue or add that nearly the entire population at some stage in their lives have had "potential" HIV risks, even if they don't perceive it as a risk.

yes! that's what I meant.

Every child is from unprotected sex. A lot of HIV infections are from two people not using protection. Heck! People in relationships just assume the integrity of their partners and have unprotected sex. Pretty much everyone, except possibly some of our ACE friends, have had unprotected sex at some point and been irresponsible.

Horny overrides common sense any day 

[Jim Allen]

Horny overrides common sense any day 

 

[BubbaPat]

I just downloaded the PDF and glanced through it.  It's shocking to see another country not looking at this through the lens of common sense.  I thought only the US was in denial about sex and all its consequences.
With their stance on care makes me nervous to go on holiday there.  If something happens to me will I be having my body shipped home?
It's 2023 and we have a robust internet and yet, articles like this happen.

Ugh.
Patrick