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

@Spreadyourwingsandflyaway I haven’t read those books or watched the films but hopefully will at some point, so thank you. There’s also 130 BPM, a French 80s activism film made in 2017 which was shown at smaller cinemas.

When Philadelphia was on again last year it felt so much more personal watching it - also saw the Dallas Buyers Club which I found fascinating - I’d no idea.. We do have so much to be grateful for with all those who came before us and fought so hard. We also now have the tools to end the epidemic but it does need many things for this to happen.

I think (as with any condition) if you know someone living with HIV you learn so much more and realise it’s not the scary death sentence it used to be. Unfortunately most people choose not to tell those around them other than a chosen few and will have their reasons. Others will shout it from the roof tops on the other hand!

I’m hoping people will continue to vote on this poll. I really would like to think that more than 19% of people in the U.K. know about U equals U, and if they didn’t, then they do now, so even better

The risk isn’t zero.
It might be very close to zero but it isn’t zero. People are entitled to choose partners based on whatever criteria they want. Political persuasion, hair colour, sporting preferences- and you don’t seem to be able to allow that for some of us, a chronic, transmittable lifelong condition that can be fatal under certain conditions is one of them.

I’m very glad you’re well. I hope you live a long and happy life with a partner of your choice. I hope we all do.

@Tingface, for someone on effective medication and who has been undetectable for over 6 months, and who continues to take their pill(s) every day, the risk is now proven to be zero, and this is endorsed in over 60 countries. There have been studies and trials done over the past 20 years which have lead to now knowing this fact. This is not just a sudden idea. Health organisations, who are known for being cautious in what they promote, say zero risk - not close to zero, or almost zero, or even negligible.
Bit more info here on trials done etc and other links re consensus statement etc www.plushealth.org.uk/undetectable.html

I certainly agree with you that people are entitled to choose partners based on whatever criteria they choose - myself included. Of course I allow that we all have our own choices. I probably wouldn’t want a partner who lead an unhealthy lifestyle leading to high blood pressure, but wouldn’t take medication to help with it, for example.

But to be clear..... as someone who is “HIV undetectable”, yes I have a chronic condition and yes I will have it for life (most probably, although there’s loads of cure research being done). But no, my condition is not fatal - it is a manageable condition And no, it not transmittable to any partners I might have due to the wonders of modern medicine. I expect to live a normal lifespan, whatever that may be - bus accidents notwithstanding 🤷‍♀️

Thank you for your good wishes and the same to you

Just remembered - after my rubbish first effort at this poll last Sunday where I had a few posts, I screenshot them before I requested it be deleted so thought I'd reply to a couple of the comments if that's ok:

@anothernamechange123 - thank you so much for challenging your friend. Sadly prejudice will always exist I think where people don't know, or won't accept the facts A lot of us tend to think enough at the start that we have some sort of enormous sign hanging over our heads.

@skunkatanka - I agree, it is a bit of a generational thing with the older ones among us remembering the tombstone ads. The younger ones see it more for the manageable condition that it is (though still scary when diagnosed). that said, it's still important not to be complacent and to be aware of the risk of all STIs. It's a question of striking the right balance and making sure that people use precautions and get tested.

@HopelesslydevotedtoGu thank you for your post – some really interesting points, especially coming from a GP perspective….

It might have been my AMA that you saw, although there was another one earlier this year by someone who contracted it from birth. The fact that you’ve never seen it in mainstream media shows that it’s obviously not getting to everyone enough. Certainly no-one wants to ram it down peoples’ throats, but just enough to get the message across along with the need for regular testing.

It’s actually been in newspapers quite a lot, and also on TV – there was quite a bit from Sasha Goodman (a mum of 2) and others a few days ago on BBC1. I think there will be increasing moves to create awareness as the government has committed to eradicating it by 2030.

Tbh I’m not sure how much my GP knew about it – I did explain about the window period to them - but then I do live in what is regarded and a really low risk area. I understand that clinic nurses/consultants do go into GP practices where knowledge is lacking to “educate them”. A lot of patients won’t even tell their GPs because they don’t know what sort of reception they will get.

You mentioned about friends being worried about catching HIV from someone preparing food in a restaurant or interviewing someone in a work capacity, but yet indulge in risky activity themselves…yes, it’s odd isn’t it? Most people think they don’t fit the type for HIV – could be why there’s so many who have it and don’t realize. Actually – there was a pop up Canadian restaurant staffed by HIV+ chefs aimed at smashing stigma a while back.

I do understand that the U equals U message is hard to accept, and will take time.

I am sad to say I am very ignorant on the subject of HIV - it would be helpful if you did an ask me anything but totally see why you wouldn't want to.

@HippyTrails - thank you for taking the time to post. I did actually do an AMA (when it was all the rage so thought I'd jump on the bandwagon ) which is here: www.mumsnet.com/Talk/AMA/3305732-Im-HIV-positive-AMA

I'm also quite happy to answer any questions in this thread - if of too personal a nature I'll just say I'd prefer not to though!

Just bumping this in case anyone else would like to vote and read if interested. Would love to get a good number - even better to show that Mnetters know more than the “general public”

Excellent programme on Radio 4. Listening Project today at 9.30. Worth listening to off website. Discussed so many bits mentioned here.

sorry, haven't read it all. I assumed that you would still need to be using condoms if you partner had HIV, so no I didn't know that U=U.

I am sorry for my ignorance and I will be sure to pass the knowledge on when I can.

I would say though, that I have taught my kids that they should ALWAYS use a condom when having sex, until they are in a long term settled relationship. So that is not HIV specific

@Shakti, thank you for that...very interesting!

interestingly, I am older and remember AIDS 'arriving' and becoming and issue.I remember the ads, and the shock of Diana shaking hands with someone with AIDS etc, and I have seen the change over time too, and the shift from an AIDS issue to being HIV + issue, and the change to HIV becoming a condition you live with.

But when I talk ot me kids (older teens) about HIV, they know very little, are almost unaware of it.

Thanks @Shakti, just listened to it - the relevant bit is around 9 mins before the end. CHIVA is such an amazing children’s charity for all those born with HIV and I love that the 2 interviewed went on to be more open about their status. Too many of us don’t dare tell due to the stigma and the fact we might be judged or seen differently.

@speadyourwingsandflyaway after your mentioning it I bought “How to Survive a Plague “ and also “And then there was one”. Only watched the second one so far - thank God for testing all pregnant women for HIV nowadays - though sadly not done as standard all over the world yet

@steppemum thanks for reading and taking this on board. I think a lot of us don't really notice anything aired/written about it unless we have a vested interest, especially if in a long, monogamous relationship - I certainly never thought it would be something that would figure on my radar

It's good what you have noticed about it changing through over the years, and although very few people in this country actually die of AIDS today, It's still thought by a lot as being the same things as HIV - ie people refer to it as HIV/AIDS. Thinking back to when I was first diagnosed all I had running around in my head was the word AIDS (and yes, I too remember the tombstone ads!). I now understand the difference.

I think our DC seem to know more about advances made than we do. I asked my DD if she'd learnt about it at school and she just said it had been mentioned but not in that much detail - and anyway there are more easily contracted STIs to be aware of like chlamydia. This is fair enough and correct really. Sex Ed in schools is currently getting a complete overhaul I believe and should become more current and relevant, hopefully from next year.

I absolutely agree with you in telling them to always use condoms until in a committed relationship. I would also say, before ditching the condoms a couple should always both get tested for all STIs, and also as standard after any relationship finishes.

I knew this. I think I first read it just browsing science news a while ago but was reminded a year or so ago after watching the film Pride. One of the characters in the film says he was the 2nd person to be diagnosed with HIV so I googled to see if he was based in a real person. He was and he is still alive and has written some articles that mentioned U=U.

(It's a good film and is currently on iPlayer)

@JasperRising that's great! I want to watch Pride so that's really useful to know it's on iPlayer atm. It's got a great cast - Bill Nighy, Dominic West etc.

Do you mean Jonathan Blake? Coincidently I saw something about him on social media this morning - it's his 70th birthday very soon. I understand he was one of the first to be diagnosed in 1982 so that's 37 years and still going strong!

He's recently been taking part in a YouTube series called "The Grass in always Grindr" which I'm currently enjoying. It's commissioned by 56 Dean Street in London (a sexual health clinic) to raise awareness and give info on many things faced today - including HIV and other STIs, chemsex parties, porn addiction, stigma, gay relationships and coming out, loneliness, self esteem etc. It's centred around gay characters but all the same I'm finding it very watchable and informative. Jonathan Blake has a small but very good part in it.

@HIVpos yes, Jonathan Blake. It is quite incredible he is still going strong given how little could be done in the 80s compared with now. In the article I read he was saying it is amazing the medical advances in relation to HIV that he has seen in the past 37 years.

@JasperRising yes, it is amazing how well he has done and continues to do. I saw earlier on this year news about an HIV+ man reaching his 100th birthday!

It really was luck of the draw in the early years on how slow/fast it progressed without treatment, and how well tolerated or otherwise the early medications were. I feel so grateful to be living nowadays rather than back then, especially given how hard they had to fight for what we get so easily now.

Looking forward to watching Pride

I did know but I take an interest--I used to work in HIV prevention and stigma reduction (overseas) at the height of the pandemic in the late 90s and early 00s.

It's one of my top reasons to be cheerful- that we have not only found an effective treatment but that it is now very (not completely) accessible to people worldwide. It is a brilliant example of international cooperation.