To think that more people know about Undetectable equals Untransmittable? (attempt 2)

[HIVpos]

So, I cocked up my first effort at this – made a coffee and trying again. Many apologies to those who posted in my first attempt. Please, please vote/post again

Last week the results of a YouGov survey commissioned by THT were announced which I found made for quite depressing reading.

Apart from the fact that according to this only about 25% of guys in my age range would feel comfortable kissing me (HIV is not infectious in saliva, even in someone not on medication with a sky high viral load), I thought that more than 19% of people in the U.K. would know about U equals U.

I’ll put a link to the article in the next post. I’m more than happy for MNetters to post constructive comments/ask questions on the other aspects of the survey in an effort to try to work out how to reduce stigma (would have to say that before my diagnosis I’d have had to learn a heck of a lot about HIV before dating someone living with it), but my question for the poll is:

Before you read this, AIBU in thinking that more of you knew that people living with HIV who are on effective treatment cannot pass the virus on to their sexual partners, even without using condoms? If you did not know this, please tick YABU

Thank you

I did not know U=U, what an amazing advancement since growing up in the 80s.
I sadly recently lost my best friend to liver failure from hepatitis B caught from unprotected sex after divorce. I saw people too scared to touch my friend, though reasonable as hospital staff reiterated cautions it was still so sad.

STD knowledge needs to be circulated as widely as possible - for many, the last information garnered was in school and that can be a long time ago.
I wish you the best of health.

I'm from the school of old farts. So actually, I did know about this OP.
Many of my friends and colleagues died of AIDS in the early 90s (when I lived in New York). I also grew up with my uncle, who lived with us and had what was back then called Hepatitis Non A Non B (Now called Hep C). So from a young age, I had to learn to be very cautious without being afraid. This meant getting the facts straight about transmission, especially in the 80s and 90s when HIV/AIDS was so frightening and the information was nebulous. But it was there.
In my lifetime, one of humankind's greatest accomplishments is the advancements we've made in the treatment of HIV/AIDS.
One of my oldest friends has been HIV+ for 30 years now.
Keep up the good work! Keep people informed, OP. And above all, good health and happiness to you!

I didn't know about U=U. Thank you op. I'm in my fifties.

I did know that u=u, from listening to Dan Savage.

Its a tough one to teach in schools for example. It's similar to lessons about drugs. Depends on the school and the teacher, but a lot of the drug material is basically "try drugs once and you'll definitely die, become addicted, jump off a building or become homeless that day". That is obviously not true. But the truer and more nuanced message "doing drugs will be fine 99.9999% of the time, and can be fun, but rarely there are bad consequences and some types are addictive, and it's just not really healthy so best to avoid it" is harder to get across.

Health campaigns tend to focus their message not around the most accurate advice, but advice that could not possibly be misinterpreted by even the silliest person in the country. Another example is the advice in this country that pregnant women shouldn't take a single sip of alcohol or they risk birth defects. This isn't true but authorities are concerned people could misinterpret advice like "1-2 drinks a week hasn't been shown to increase risk" and think it means drink 1-2 bottles a day.

So I'm not sure if u=u will be promoted any time soon.

I had no idea, but I admit to being woeful uneducated about HIV. If I were to meet someone who was HIV+ then I would take it upon myself to educate myself about it and not make assumptions.
I did know you couldn’t catch by kissing though.
Great thread!

Sadly I think basic science is beyond sooooo many people. And your HIV issue is actually fairly nuanced. It’s going to be a hard ask for the majority of the population to take on board, understand, remember and act on.

I mean, look how people are with climate change or understanding their own finances. Basically crap. Self-interested and wilfully ignorant. Present them with something that requires a bit of self-education or focus and being compassionate to other people? Expect them to flick channels, I’d say.

Yes, I’m quite the cynic. I look for evidence that I’m wrong about people all the time, but I don’t get many pleasant surprises. Thanks for teaching so many of us on this thread something, though, that’s a plus anyway!

@EmeraldShamrock thank you. Yes, Princess Diana did an amazing amount in promoting understanding rather than fear around the virus which helped reduce the stigma so much experienced. Unfortunately it does still exist in many areas though 😟

Weirdly, (I don’t think this would out me as she knew so many people) I knew her for a short time before she was married and would never have thought that this is something I would personally be grateful to her for. I’m so pleased that Prince Harry is continuing her work.

@MrsTeaspoon I am so so sorry to hear about your best friend. From what I know the vast majority of people who are exposed to Hep B clear it naturally and then create antibodies which make them immune to reinfection.

Although, sadly, this is still seen, the hospital staff should have known better. They should have reassured that touching was fine and it can’t have been pleasant for your friend. Like HIV, (copied from NHS website)
Hepatitis B is not spread by kissing, holding hands, hugging, coughing, sneezing or sharing crockery and utensils.

Nowadays children are vaccinated as standard against Hep B which is great. After my diagnosis I had tests for all sorts Hep A (I still had the antibodies from a previous jab 20 years back) Hep B (negative, I was offered the jabs and accepted them a while later) CMV etc.

Thanks, it’s still very raw as I researched and found how uncommon it is not to recover, sadly my friend’s liver was already (unknown) compromised and that coupled with them seriously hiding their head in the sand about the jaundice, fatigue, stomach pain etc meant complete organ failure...nasty, nasty and I do understand people’s fears - when a patient has blood coming out of orifices it’s sensible not to go in for a hug just in case. 41 years old.
You’ve reminded me I needed my knowledge updating, and as I have young teens I can make sure they understand facts and not scare stories or the opposite - dangerous blasé attitudes. (In my work a couple of years ago I came across a girl who came from a very religious background and she had heard from peers that an aspirin placed in bellybutton would stop unwanted pregnancy and stds. She naively believed it.) Sorry, I’m waffling, guess I’m just trying to say yanbu to help people know more facts!

I did know, from friends where one partner is HIV+ and one not.
Like a pp I wonder is part of the reason they don't massively promote U = U (apart from the total lack of public health budgets) is because so many people are already very blasé about using protection and for casual partners, there's really no way to be sure about their diligence. The fact that over 50% of pregnancies are unplanned is testimony to how many of us are a bit crap at remembering to both use condoms and remember regular medications...

@Skittlesandbeer I respect and understand your POV. Before my diagnosis I’d have probably flicked channel on HIV or anything else that I thought might not have any relevance to my life.

I’ve tried hard to only give proven fact based info on here and am just grateful that people are reading it, so thank you.

@MrsTeaspoon thank you for explaining further . Sadly it is often seen with a lot of illnesses where people just stick their heads in the sand - for whatever reason.

You’re not waffling and I agree, it is important to try to seek the right balance with DC and using up to date information. My DC at least seem well informed from what they learnt at school on STI testing and the need for condoms and using contraception

I didn’t know but however personally I wouldn’t take the risk however tiny regardless.

What if they miss a pill, what if they have had sickness etc

I would treat it the same as herpes in that I wouldn’t risk myself getting a life long incurable condition. I don’t think we shout be shouting from the roof tops about it either many people are far too lax about stds and Stis Currently.

I genuinely didn't know the thing about saliva or about U being U and I'm fairly young but not dated for a while

I did know that they can stop it being passed on to babies though and about the life expectancy thing, both of which I think are brilliant and amazing

@1300cakes
Health campaigns tend to focus their message not around the most accurate advice, but advice that could not possibly be misinterpreted by even the silliest person in the country. Another example is the advice in this country that pregnant women shouldn't take a single sip of alcohol or they risk birth defects. This isn't true but authorities are concerned people could misinterpret advice like "1-2 drinks a week hasn't been shown to increase risk" and think it means drink 1-2 bottles a day.

So I'm not sure if u=u will be promoted any time soon.

Reminds me of what I wrote upthread about my consultant not liking me drinking - even in moderation

I agree that health organizations err on the side of caution, and there is actually no misinterpreting, for example, Public Health England’s endorsement of U equals U – or the CDC in the USA, or the World Health Organization. They really do endorse that there is zero risk where a person is taking their meds and is UD (to be correct, UD for more than 6 months - that's the cautious bit!)

The UK government is actually committed to eliminating new HIV infections by 2030. Awareness around it, knowing the risks, getting tested and reducing stigma are all part of it.

It is being endorsed and promoted (will explain further in another post) – and will I understand be taught in schools, just as soon as the long awaited new guidelines come out. As you say though, it will probably be variable though in how it is taught.

@TheCatDidSay
I didn’t know but however personally I wouldn’t take the risk however tiny regardless.

What if they miss a pill, what if they have had sickness etc

As said, where someone is on medication with an undetectable variable load, the risk has proven to be zero.

Missing a pill or having sickness are great questions though. Taking HIV meds nowadays is a lot more forgiving than it used to be - it no longer needs to be taken at exactly the same time every day, and still works even with the odd dose being missed. Yes, I would be worried about sickness on an ongoing basis, just as I would be with any pill I was taking and it not being absorbed properly. It's like any medication - say if I was sick on the contraceptive pill I'd be taking extra precautions (and taking the contraceptive pill has not been proven to be zero risk anyway.)

In (particularly) a casual relationship of course the responsibility is always with us to practice safe sex and knowing risks of all STIs.

I did know this but I studied microbiology with a particular focus on virology and have always been interested in dispelling the stigma around HIV.

Not saying you need to study it to understand this fact, but in my experience it isn't common knowledge and not something you would know unless you sought the information out.

A lot of people think that straight up sex= transmission for example, without understanding that there must be a breach of mucous membrane (I am NOT advocating unsafe sex, just that HIV is not that contagious of a disease)

I didn't know any of this.
The drugs you take, are they free or do you have to pay for them?

The drugs you take, are they free or do you have to pay for them?
I was just about to ask this too!

Sorry, my last post should read viral load, not variable load

@GibbonLover, so pleased you find this thread fascinating

Corrie haven’t made too much of the Seb and HIV storyline (and to be fair they do handle a lot of issues) but hopefully enough that watchers have taken notice. The blood thing is something that all of us can worry about when newly diagnosed, however as buttertoastie said, it’s actually quite difficult to catch and needs a very specific set of circumstances in both sides to do so.

@TheVanguardSix great post - I didn’t know that about what Hep C was initially called, so interesting!

I’m so pleased for your friend who’s been HIV+ for 30 years. For those who contracted it at the start it was a survival lottery on how slow or fast it progressed and how well they could tolerate the medication. I do feel really fortunate to have caught it further on down the line when there had been so much progress made.

Thank you for the last bit - kind comments like that still have the ability to make me cry, but in a good way!

YANBU. However, i think people like to moralise anything that can be sexually transmitted rather than learn the facts.

@Nesssie and @flamingjune123 totally free under the NHS. We are incredibly lucky in the U.K. that we have such choice, and generics can be used wherever available to reduce costs. We can also get them delivered to our home or workplace which reduces the cost further to the NHS as VAT is not payable.

More info if anyone is interested - Generally I think medication is free wherever you live in the world I - but with provisos. In some resource poor countries there might less choice and only free access to the older meds - which, while still effective, might have the possibility of more side effects. Stocks might be limited, which could mean travelling long distances more regularly with long waits which can make life difficult (as a comparison I get mine every 6 months - the delivery method meaning that the NHS does not pay VAT).

In the States treatment is paid for via insurance, and depending on which is taken out, extra can be paid if more expensive meds are taken. Because drug costs in the States are insurance driven they can be stupidly expensive compared to here. For those who can’t afford the insurance there is access to the Ryan White programme for free treatment and care

@Skyecat YANBU. However, i think people like to moralise anything that can be sexually transmitted rather than learn the facts.

This is true, STIs tend to be associated with promiscuity and not practicing safe sex. However they can also be caught through rape or a broken condom. Someone can live with a partner for several years who might have unknowingly contracted HIV from a previous relationship, and they believe that because they know and trust each other, and are monogamous, that testing isn’t needed. The vast majority of people who pass HIV onto another person do not realise they have the virus.

Along with the U equals U message I am trying to get across, I do and will always advocate for practicing safe sex and regular testing for all STIs.

@HIVpos thank you for this fascinating thread. I did know that U=U, but that's because I've read around the subject of HIV quite recently. I read the book "And The Band Played On", which documents the AIDS crisis in the 1980s in San Francisco. Then I read the book "How To Survive A Plague", and saw the film of the same name, and also became interested in one of the activists featured in the film (Peter Staley) and what he has to say.

I worked with a guy who was HIV+ a couple of years ago and learnt a bit from him as well. I just think the HIV treatments that have been developed represent an incredible achievement, and the story of the activists in America in the 1980s and how they battled for research and drugs, as well as all the buyers' clubs, is a story everyone should be taught, really.

Anyway, thank you again for posting this thread.

PS I didn't vote because I'm not sure how many people actually did know that U=U. I was blown away when I found out. Incredible.