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

@MacavityTheDentistsCat I posted the poll as the other one was U.K. based so wanted to do a rough comparison to see how true it was. That said, awareness campaigning is being done in many parts of the world, so wherever you are it is relevant. We are incredibly lucky here having ready access to the most current meds and the NHS which is why 97% of us who know our status are UD. In some other countries resources and access to care is lacking and isolation, and stigma are way worse than it is here.

I’m more than happy for people to share their thoughts wherever they live 😀

Thank you for posting this as I didnt know.

However, I am also unlikely to sleep with someone I dont know well enough for them to tell me this and do my own research anyway. I have never slept with anyone I havent know a good long while as a friend.

I am divorced late 30s.

I do agree though there should be more campaigning around STIs in general. And yes, as pp, said based around fear. I know many women having unprotected sex. As you say, usually older and divorced that seem to think they wont get pregnant because of their age and men their age wont have STIs.

Although I would like to see more coverage of the advances in HIV, I wouldnt like to see anything that would be interpreted as telling people unprotected sex is safer now.

I did know ,this as I have read bits about it ,excuse my ignorance though can I ask does the medication affect you in anyway I'm aware people living with HIV can lead a normal life span ,does this mean their health is unaffected ? Sorry I'm not sure how does to phrase it .

@x2boys good questions, and actually very relevant to anyone living with HIV. Apologies in advance - might be long!

HIV treatment has moved on massively over the years and is now generally very well tolerated. Sometimes there can be side effects, as with any drugs, but they tend to settle down. If they don’t then there is the option to switch to something else. My meds do not affect me although I remember one of the first ones I took causing a bit of nausea which disappeared as soon as I ate something. Some people have sleep problems which disappear when they take their pill earlier in the day.

I currently take 1 pill a day which needs some food with it - doesn’t matter how much, so I take it at supper. This has 3 drugs in it which is regarded as the “gold standard” of therapy. However some 2 drug regimens have now been, or are being approved, and shown to be non inferior (ie they work just as well) which I hope to swap on to. We talk about “drug toxicity” so 1 less is a good thing in my books. We get regular check ups for liver, kidneys etc so if the numbers trend in the wrong direction something can be done - treatment changed etc.

As far as life span goes, it really depends on many factors. As I mentioned upthread, most of us look after ourselves better than we might have. Someone who stops smoking after getting an HIV diagnosis has a chance of living way longer than had they not contracted it and continued to smoke.

It is thought that even with treatment, some low level inflammation exists with the increased potential risk of such things as cardiovascular disease, decrease in bone density, certain cancers etc. Hence the regular tests together with advice on how to mitigate this - healthy eating, regular exercise, alcohol in moderation etc.

There’s quite a lot to this subject. For example in resource poor countries - those when stigma, isolation, availability of care and treatment, ignorance, other untreated health issues etc exist, the outlook is not so good.

Looking at this from a personal point of view I had a pretty healthy lifestyle pre diagnosis (good BMI, don’t smoke or take drugs, rarely eat processed food etc) so haven’t changed that much. I’m on annual smears instead of 5 yearly due to possible increased risk of cervical cancer, I try to include more oily fish in my diet and I’ve now added a Pilates style class to the high impact aerobic one I do. I also take HRT in patch form as even though I don’t have menopausal issues as such it’s useful for bone health.

However I still intend to enjoy myself - eat chocolate, drink alcohol etc (- my one bugbear with my consultant who would prefer me to be teetotal 😟)

What about escape mutants? Just because you test UD doesn’t mean you don’t still have latent virus replicating and potentially mutating to become resistant to the drugs you’re on. Even if the risk is very low, if I was the HIV -ve partner in a serodiscortant relationship I would use condoms as a precaution.

Thanks for answering @HIVpos very interesting.

I knew this, but it's nice to see some many people being educated this morning. Every day is a school day!

I heard a doctor friend say once that they would much rather be HIV+ than have diabetes these days, and most of their doctor friends agree with that stance. Also, I think I read somewhere that statistically HIV+ people with an undetectable viral load actually live longer than their HIV- peers (likely due to HIV+ people being much much more closely monitored health wise).

Can I ask another question ,if someone got a diagnosis very late and developed an AIDS related illness ,can medication reverse it too undetectable?

I know U=U. However at the kissing stage I would be more concerned about catching cold sores in my 50s than HIV Oh yes, let's destigmatise HIV by stigmatising herpes. Way to go.

@x2boys quick answer to your question is yes, it is reversible.

Longer answer - there are still unfortunately a lot of people being diagnosed late. Example - someone gets infected, doesn't realise, doesn't get tested, they have no symptoms. Nothing happens for many years, they have relationships with no passing it on (it's actually quite difficult) However in the body the amount of virus is increasing and the body's immune system, in the form of white blood cells called CD4 cells, can't fight it anymore so become depleted. The person experiences more minor ailments - opportunistic infections such as colds, thrush, skin problems and generally feeling run down. It then comes to a point where they end up in hospital with an AIDS defining illness. At that point when their diagnosis is known, they will be treated for whatever they are admitted for, and also started on (generally) co-trimoxazole (septrin) which will help prevent against other opportunistic infections. The HIV meds tend to bring the virus under control very quickly - and to undetectable levels, which then allows the immune system to recover.

Now that said, it generally takes longer for the immune system of someone who has been late diagnosed to recover, and there may be some ongoing problems for a while after....which is why it is so much better to know sooner rather than later.

I knew you can’t catch HIV from kissing but I didn’t know that once on effective treatment that the virus would not be transmitted during unprotected sex.
I would feel 100% confident kissing someone with HIV even before knowing this and I’d never of had any worries sharing cutlery etc with someone diagnosed with HIV.
I don’t think I’ve actually thought about HIV or AIDS since the late 90’s but I’m glad of this campaign and hope it reduces stigma for those affected by it.

I didn't know, so thanks for this thread OP. I'm in my 40s and vividly remember that awful tombstone ad. I think that ingrained in me the need for always using condoms (at the start of any relationship or for ONS).

I will always stress to my DCs that they need to practise safe sex, not just because of HIV (however treatable it has become) but just to avoid STIs in general.

I knew this but I have worked in a related field. I'm now wondering how many of my friends know.

Personally, I and the only person outside of work I've discussed it with, were slightly sceptical of the statements being made, on the grounds that just because there is extensive evidence that something (transmission from someone with an undetectable viral load) hasn't happened so far, that doesn't mean that it is impossible that it could happen. Unless the virus is completely eliminated I don't understand how we can be so confident as to say transmission impossible, even though obviously the fact it hasn't happened in the ever increasing number of people studied demonstrates the risk is incredibly low

I'm in my late 50s and have been married for over 25 years, so I don't keep up to date with this sort of stuff these days and had never heard of u=u.

Given my age, I do remember the 80s. In particular I remember the Rock Hudson/Linda Evans kiss on Dynasty and all the discussions then about whether HIV could be transmitted by kissing.

In the late 80s I had a work colleague who died of Aids. I knew he was ill, but not what of, or indeed that it was anything serious at all. It was all kept very hush hush and we weren't told until he had died. We have made such huge progress since then, both medically and emotionally.

I did know this but only through my degree (I'm a student midwife). We all saw the topic on our timetable and thought it would be mega depressing - BUT we actually all came out quite uplifted and amazed at the progress that's been made.

@CanCanCanYouDoThe

What about escape mutants? Just because you test UD doesn’t mean you don’t still have latent virus replicating and potentially mutating to become resistant to the drugs you’re on. Even if the risk is very low, if I was the HIV -ve partner in a serodiscortant relationship I would use condoms as a precaution

“Escape mutants”? Yes we have latent (dormant) virus, which is why we take meds every day, to stop it from reproducing and therefore resistance emerging. It is true that resistance can happen if meds are regularly missed, but while the virus is suppressed there is no reason resistance should happen, and there is rather more to it than someone forgetting to take their pill on day, viral load increasing and resistance emerging. Some drugs take many many mutations before they become resistant, and actually most mutations are not of the “resistance making” variety.

Taken from aidsmap, which is a trusted source:
Even among people with detectable viral loads while on therapy, one study has found that new resistance mutations occurred relatively slowly, at an average rate of 1.61 mutations per person per year. The development of resistance was linked to higher viral loads, a faster viral load increase, and having fewer pre-existing resistance mutations.

Keeping this in mind, and also the results of, for example, the Partner Study 1, (which included hetero couples) this is why is has been proven and endorsed worldwide that U equals U. So, the risk is actually zero – not low, or even negligible i-base.info/htb/30108

Of course it is always personal preference on what any couple want to use, condoms to also protect against other STIs say, or PrEP. I do understand the skepticism, despite the studies and proof, not to mention the endorsement of this fact by all major world health organizations, and it will take time for perception to change

@ProteinshakesandAntonsAss

As I mentioned in another post, someone can be knowingly living with HIV for many years – there are about 7,800 such people currently in the UK who don’t know their status. Whether you have known someone a long time as a friend before sleeping with them, or just a few weeks is immaterial. Something I have learnt is that the responsibility lies with each and every one of us when starting a new relationship.

As you say, there should be more STI awareness done, but I disagree with you and PP that it should be based around fear. I have discovered that health anxiety – and HIV anxiety in particular – is a very real thing. Fear can promote stigma, isolation, denial and discrimination amongst other things. I understand that some people on receiving their diagnosis are so terrified of what they might face from their friends and family that they won’t return to the clinic for treatment. They think it will all just go away, which it won’t, of course – very sad.

HIV awareness should be done in context, kept current, and kept real – and I totally agree, certainly not to promote that unprotected sex is safer now. There should be more regular testing done in all age groups, STIS increasing in older people etc – it’s just getting the message out there!

No need to patronise me OP, it makes you look ignorant. Escape mutants is a very standard virological term. I won’t define it because it’s pretty obvious.

I didn't intend to be patronising at all CanCan - sorry if you thought that. I had never heard of escape mutants or seen it mentioned and actually it gave me a bit of a giggle as it made me think of little green aliens living inside me!! I have now googled articles on HIV and escape mutations so thank you - always happy to learn more. Luckily the chance of this happening is very much reduced nowadays due to the modern meds

I did know that HIV couldn’t be caught via kissing but I do think the early ads mentioned deep kissing to be considered a small risk? I’ve no idea how to be honest but it’s stuck int he back if my mind.

I didn’t know U=U but like others I’ve been in a long term monogamous relationship (and had HIV test during pregnancy) so it’s just not been on my radar to be honest. It’s fabulous news however!

Yes @MulberryPeony it was thought that it could be transmitted by deep kissing - and also spit. Possibly they were playing it safe while not a lot was known? We do know now that this is untrue and understand why that is.

I really think that too many people know too little about HIV, and others STIs. That is people of all ages including those of us scared witless by tombstones and young people who theoretically should have received better sex Ed. I am not sure what the answer is, but thanks OP. This is a useful thread worth keeping bumped for a few days.

@Shakti, yes it is true a lot of us know so little about STIs. I was offered testing for Trichomoniasis (which I’d never heard of) along with the more common ones at my first clinic visit.

Sex Ed is currently getting a revamp here in schools so hopefully will improve and hopefully then be kept up to date

I haven't rtft. If mentioned.
I often think if it wasn't for Princess Diana her exceptance of the HIV virus, the work she done to highlight it, the handshake, would modern medicine be so advanced.
I don't know much about the virus but I'll catch up on the thread tomorrow.

What a fascinating thread! I love ones like this where you're actually learning something - thanks @HIVpos

I had heard about U=U, but only because of a remark I made while watching Coronation Street. Seb, the young man with HIV, had an accident and his blood got on another character. I said something along the lines of "OMG, she'll get it too!" and was corrected by my friend.

I'm old enough to remember the tombstone too but the one that really freaked me out was the late night TV ad where a M/F couple were dtd and their faces kept changing (like in that Godley & Creme video).