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Comment by joshlittle | Hacker News Reader

U=U is fantastic science; though it hasn’t been enough to totally remove the stigma of HIV, even in San Francisco. I believe it comes from not enough dissemination of information regarding the nonexistent risk of contracting HIV from an undetectable partner.

I’m also concerned that by focusing on HIV as a manageable, chronic condition - we discount the need for a cure.

A dystopian future possibility that’s come through my head is the cure is a century away despite progress, and U=U doesn’t do enough to remove the stigma faced today regardless how much the public is informed of the science.

I believe that a cure is required to truly remove the stigma of HIV.

I can scream “I am undetectable” from the rooftops and what that entails It’s never going to matter to the people that find creative ways to cancel plans, get out of dates, etc. when I disclose my status as HIV+ to them.

I’m at least thankful for the people that tell me it makes them uncomfortable to consider kissing or any sexual contact - even with this knowledge. And even with pre exposure prophylaxis / PrEP.

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I think in addition to the stigma, there will always be a matter of trust. If someone claims to be undetectable, at what point do you believe them? Right away, no questions asked? What level of trust is required to be sure they ever were, or still are, undetectable? Has the source of their medicine changed? How secure is their access to it? Any financial stresses or other factors that would affect their medicine's availability?

It's a lot to ask of someone - on both sides. How do you think someone could approach this in a way that preserves your humanity and your privacy?

A very similar kind of trust is required in general for any sexual contact: if someone claims to have been tested, at what point do you believe them? Has that changed? How reliable is their access to testing? Could they have contracted something recently, and it is simply incubating with no symptoms?

It's not exactly the same, but it's not entirely different.

The demand for Levonorgestrel (aka Plan B, or morning-after pill), abortion, not to mention other STDs, can be seen as indicating that that trust is not always warranted.

These aren't indicators of lack of trust, merely that things happen.

Even with testing, not all STD's show up on tests - this is why folks get tested regularly. Many folks won't know they have an STD (think HPV). Condoms break, get forgotten, and so on. People do stuff when they are drunk.

Rape happens (rape isn't a lack of trust but rather something else entirely).

   These aren't indicators 
   of lack of trust

I disagree. There are multiple levels of trust:

- Your partner that they don't lie about taking contraception, that they have taken it as required.

- The medical sciences and medical regulatory authorities that the contraception works as expected.

- Pharmacist that they don't sell counterfeit medicine

and many others. Society is largely based on trust.

But trust doesn't mean you won't have demand for plan B. It doesn't mean you won't have STD's. Society is, indeed, based on trust but yet, none of these products means you don't have trust.

Humans happen and make mistakes. Condoms break. Therefore, plan B.

One doesn't have to be promiscuous or untrustworthy to have an STD. All that means is that you've had sex with someone. Someone might not even know they have an STD either. Even if folks have more than one partner, it doesn't actually mean they are sleeping around or that they are being dishonest, nor does it mean they'll get an STD.

In addition, if you are trusting that your partner has taken something as required, you probably are in a sexual relationship with someone you are familiar with. Otherwise, the prudent thing would be to use a condom and hope it does not break.

Contraception working as expected leaves a lot of room for error. Again, condoms break. Medications interfere with hormonal birth control and most folks don't take it like laboratory settings, which increases risk of pregnancy. This is all still "working as expected".

What you say is true, but I'm not sure it's in contradiction with my point.

If The System tells me that contraceptions are X% effective, and I believe them, and it's true, the problem remains of the failure rate. That's unrelated to trust.

That's maybe mostly a semantic quibble about the precise meaning of trust. I don't think it's considered absurd to say "I trust that my plane won't crash" when flying. Maybe it's more usual to say "I hope that my plane won't crash". It appears to be the case that we "hope" if we don't see the social dimension of the phenomenon we are referring to, while "trust" is also communicates a stronger social dimension.

Note also that in interactions with humans, we generally don't have a precise probabilities.

Condoms break, despite whatever trust I have in them. That's when it's time for Plan B.

I'm not sure what contraception has to do with trust.

Clearly A's statement

   I'm using contraception method X

could be true or false. If you are not verifying the truth of this statement, and have heterosexual intercourse with A, you are trusting A. How do you verify such a statement in practise?

Especially since we live in a fucked up world where there are people who spread HIV on purpose as some sort of sick goal. I wouldn't trust someone I don't have a lot of history with about something like this.

I don’t think they would tell you they were HIV positive if their goal was to infect you.

In a Bayesian framework, a person telling you they are HIV+ would seem to serve to establish some trust. Why admit to to that, but then lie about viral load?

On a more practical level, I would probably go on PreP if I regularly had hookups with men. I’m actually somewhat envious of the gay scene in that regard. The option just doesn’t meaningfully exist at the mostly-hetero sex parties I’ve been at.

> Why admit to to that, but then lie about viral load?

I mean I'd worry that they were being honest, but mistaken. I'd have to do a lot of research on the efficacy and frequency of testing beforehand (e.g. it's possible that it might be calibrated to be frequent enough to provide proper care for the patient, but not to guarantee to protect partners).

Your worries are misplaced. Three drugs are what keep them undetectable. And once you are there for a period of time (3 months to be safe) you stay that way forever as long as you take your medication as prescribed. Once they are at that point they will be getting blood tests every 6 months.

So really you need to be trusting that they are responsible enough to take their drugs every day. These days that is pretty easy, most people take 1 pill in the morning and that's it.

What option doesn't exist? You can take PreP regardless of what kind of sex party you go to.

I was hinting at the answer: it’s not a known concept, so your (potential) partners will tend not to trust it. Plus I would prefer both to be on it.

But this isn't necessarily a bad thing. PreP needs to be taken religiously to be effective, or it can lead to increased exposure by people who take it irregularly. So it's mostly only offered to high-risk populations that would have an incentive to take it properly, and afaik, straight white cishet people aren't such a population.

The fact that people don't trust it means nobody's casually taking it or taking for granted that other people are taking it. So it increases awareness of the potential for contracting HIV and underlines the need for protection. At the same time, you can independently choose to take it and provide yourself more protection. So I think it all balances out.

Why can’t you go on prep?

But the stigma must remain until the disease is defeated. We should not allow infection to become normal, an acceptable part of life. Diseases evolve. Within a population of hosts they can mutate and struggle to survive just like any other species (as opposed to within a single host). A drug-resistant strain may one day emerge by the same principals that give rise to an antibiotic-resistant bacterium. HIV may today be under control but we still need to eliminate it. The only path forwards on that, at the moment, is to reduce transmission. The stigma, people being at least somewhat afraid of infection, is part of that campaign.

There's a difference between healthy fear of dangerous things, and an irrational fear of something that isn't contagious. The stigma that we're trying to get rid of is the latter, not the former. People should not be afraid of casual interaction with HIV+ people, and should not really be afraid of any interaction with an HIV+ person with an undetectable viral load.

Think of other terrible mortal diseases of the past, and how people must have reacted to someone with them, like tb. You'd be terrified of it, even when some kinds became treatable, especially if you'd seem people dying slow death from it.

The stigma isn't necessary to continue working towards a cure.

No, but top-level parent seems much more likely to donate to research because of that stigma, from what I'm reading here.

My problem with this is how can I verify my hookup is taking their meds and undetectable. Trust but verify doesn't seem to work here for hookups and one night stands.

The amount of positive guys on PrEP or even non-positive guys on PrEP who refuse condom sex seems to be greatly increasing. And it seems like there is now discrimination the other way; can't tell you how many times I've been pressured or refused or looked down upon for refusing non-condom sex or not going on PrEP myself.

This genuinely seems ridiculous, what kind of peer pressure is that!

All too common.

At some point, you have to have hard lines. It's entirely reasonable to dictate what a sexual partner gets to do with and to your body.

>can't tell you how many times I've been pressured or refused or looked down upon for refusing non-condom sex or not going on PrEP myself.

Seems like a great social signal that those aren't people you need to bother with having in your life.

Well if anything, this is good for you, as you can avoid people who are clearly ignorant and unnecessarily risk-taking. They're probably not even considering things like the epidemic of antibiotic-resistant gonorrhea cases.

> My problem with this is how can I verify my hookup is taking their meds and undetectable. Trust but verify doesn't seem to work here for hookups and one night stands.

It is simple. Do not have hookups with HIV+ people. Why are we normalizing this.

You can't be positive and on PrEP. The protocol requires testing every three months, and in the very rare (so far cases number in the single digits) situation where it fails, the patient is moved to a more appropriate regimen.

also sorry just re-reading. i typo-ed: e.g. positive guys that are on treatment (obviously not pre-exposure) and undetectable (which my point is I can't verify)

and if they dont take their meds for a month in between this time period is my problem. not to mention other STIs

I don't think people with HIV should be stigmatized, but I don't want getting HIV to be normalized. Sure, it's a manageable condition right now, but everyone who has it has to know in the back of their mind that the drugs they use today might not be effective in 5, 10, or 20 years.

I wouldn't have a problem being in a relationship with someone with HIV, but even if his viral load is undetectable, I would still insist on protection for high risk activities.

The normalisation would work towards allowing the drug companies to be comfortable with a rent-seeking scenario, where they have a huge population that has little choice but to use their services, at whatever cost.

And of course, that might mean an actual cure is detrimental to the bottom line, which might impact funding for any of these studies.

Except for the fact that it's expensive to keep people on HIV meds, thus increasing the value of a cure. And the meds are made by lots of companies in competition - if anyone had science they thought would lead to a cure, they would be all over that straight away.

This also assumes that the only motivation is money, if a researcher came up with a cure for HIV they would become an instantaneous scientific god, immortalised in writing, films, having streets and libraries named after them. They would be a hero. That motivation is pretty powerful for many (not for all of those things, but the be a hero part).

The drugs a specific person is taking today will be effective forever as long as they take them every day as prescribed. Hiv mutates when doses are missed or you take less than 3 drugs to combat it. There exists no future in which hiv drugs we're using today suddenly become ineffective.

A subset of the population will become resistant to certain classes of drugs, because people do stop taking drugs etc. And gain resistance, then pass that on, but for a specific individual their current regimen should be good for as long as they take it. Realistically people change drugs every so often as better drugs with lies side effects are released, but not because of new resistance development.

Now this did used to be a bit if an issue since people had to take multiple pills at different times a day. Having to do that makes missing doses easier, and then resistance can develop. But these days most people are on a single pill taken once a day that completely eliminates that risk.

You're thinking of this like antibiotics, when it's really not a comparable situation.

One note is there is no promise that a cure for HIV is possible, and if so, isn't potentially decades away.

Drugs like this, and HIV as a manageable, chronic condition have the potential to vastly change the face of the HIV epidemic.

A bigger concern, in my opinion, is how you get the drugs necessary for this to a place like Uganda, where the per-capita annual health budget is $0.05.

> like Uganda, where the per-capita annual health budget is $0.05

Ugandan here, didn't know this! Or hadn't calculated. But the public health system is really terrible. It's unbelievable. However, ARVs are quite available, I know people that have no trouble getting them for free.

They are, which is good. It's more a concern that the widespread availability of ARVs is somewhat dependent on the developed world still being terrified of HIV and thus heavily subsidizing treatment.

Like a vaccine-preventable disease near elimination, I worry a lot about people taking their foot off the gas.

And last I talked to HIV control folks in Uganda (several years ago, admittedly) there was a lot of concern about survivability meaning a dramatic increase in the prevalence of HIV, and thus the demand for ARVs.

> where the per-capital annual health budget is $0.05

That surely must be a typo, right?

No.

Malaria, HIV, myriad diarrheal diseases, vaccines.

You've got a nickel per person.

https://www.newvision.co.ug/new_vision/news/1479921/budget-s...

It says $15 per capita.

Then it's improved dramatically since I was told the figure I was told, which was admittedly a few years ago by the deputy minister for health.

It seems hard to get a fixed number. Doing math off the Uganda MOH budget puts it at about $4.

But it should also be noted that even the optimistic figure likely also includes things like hospital construction, money to pay healthcare workers, labs (and lab reagents), etc. that isn't what people normally think of.

I'd really like my number to be wrong though. Because even $15 per person is...dire.

Your number is definitely wrong, even by your own calculation. Why don’t you update your posts above, which just peddle some ridiculous stereotype of Africa?

Your reasoning also leaves out that a lot of health care never goes through government coffers, both in African nations but also, for example, in the US.

I can't actually update the number - though I wasn't peddling some "ridiculous sterotype of Africa". I work in infectious disease prevention in Africa - and I got that number, as mentioned elsewhere, through the Ugandan MOH. That there are extreme constraints on funding is just true, and does impact a lot of decision making.

For that matter, if you'd like me to talk about the way non-African healthcare systems are broken, I'm happy to do that as well, that just happens to not be what this thread is about.

Also, the programs we are talking about rarely go through non-governmental sources.

For those who desire an interesting and/or depressing breakdown:

http://www.mmlonline.org/uploads/08%20Health.pdf.pdf

That's an expired domain. Might care to check your link, bookmark, or typing.

"This domain name expired on 2019-05-03 08:49:13"

Literally expired last night. How frustrating.

Hah! I hadn't noticed that.

Sadly, missed by the Internet Archive.

It's been 5 years but I rememeber being in a 2 hour talk (I used to work in vaccines) about the difficulty of coming up with a vaccine for HIV, never mind a cure. It sounded then like it was a long long way off, and we're still only just getting much more simplistic diseases vaccine preventable (malaria is what I'm thinking of, the new vaccine is only marginally effective, which may be enough to cut the cycle of transmission... or may not).

    potentially decades away

Would you be able to sketch, in a sentence or two, why we can be reasonably certain about cures being difficult. Is there a specific reason? Are you similarly pessimistic about a vaccine?

Vaccines do well for diseases for which your natural immunity can protect you from them after you've created antibodies. HIV works the other way: the virus lets you create antibodies and then it wins the fight by hiding in your immune system and slowing turning the tables.

The virus also stay dormant within your cells, and it is not absolutely clear where, yet. Other viruses which do this (chickenpox, herpes, papillomavirus, ...) are not cleared from the body by the immune system either, but at least the immune system can control them as long as it is healthy enough.

This facts, of course, are no reason to be pessimistic about a cure/vaccine, just explains why it is taking that long. A cure might also pad the way to cure other diseases such as chickenpox and herpes, which may lead to complications later in life.

Among other reasons is that HIV is extremely bad at replicating itself without error. Which means, especially combined with the long-term nature of infection, a lot of genetic variation within a single person's viral ecology.

Generally, it's much easier to develop a vaccine for more stable viruses.

We might be able to target some sort of antigen on the virus that's highly conserved even with that mutation rate, but that's a big if.

The uncertainty that remains is "will an undetectable HIV+ individual stay undetectable?". The answer is "yes" with medication compliance, but the stakes are much higher than for compliance with birth control, where noncompliance is an issue.

Only 1 viral disease has ever had a cure, Hepatitus C. That was only recently after a huge investment by Gilead.

It is astounding that Hepatitis C is the only viral disease that can be cured with medication!

We have antibiotics primarily from fungi derived substances, but there are no other class of substances we’ve been able to appropriate for our own use to treat viruses.

I find it amazing that viruses, which are supposedly “simpler” aren’t more vulnerable.

But thinking about it, prions are even simpler and have no know treatments.

This demonstrates, then, that complex systems can be quite fragile.

> I find it amazing that viruses, which are supposedly “simpler” aren’t more vulnerable.

That's WHY they're less vulnerable. Less complexity reduces the attack surface. With microbes, there are lots of ways to disrupt their biological processes, but viruses have fewer attack vectors, making it difficult to target them.

My last sentence would appear to agree with you here.

I'm interested if you omitted the anti-virals which break reproduction as not-cures in this case? We've got at least 3 of those for influenza viruses.

Sorry, no, I wasn’t aware of those.

Sofosbuvir, the Hepatitus C cure, was developed by Pharmasset before it was acquired by Gilead for $11.2 billion. Gilead paid for the later stage clinical trials but by then it had already been tested in humans and it was obvious to pretty much everyone that Sofosbuvir was something of a miracle drug. The time from discovery to marketing approval was only six years which is an almost unheard of pace.

Gilead spent $11 billion, some of which went to compensating Pharmassset investors who put up a lot of money to make it happen. And crashing in Phase 3 is not unknown: Pfizer has lost how much on Alzheimers? Plus toxicity and rare side effects can doom drugs.

In case anyone wonders why: https://www.bloomberg.com/opinion/articles/2018-11-27/gilead...

What do you mean by "cure"? And in what sense is sofosbuvir (assuming that is what you mean) a cure for hepatitis C, but acyclovir is not a cure for varicella zoster?

Acyclovir definitely seemed to help when i had chickenpox!

It treats the symptoms but the virus is still active:

"It can treat herpes virus infections, including shingles and genital herpes. It can also treat chickenpox. This medication does not cure herpes, but may prevent herpes sores or blisters."

What about smallpox? Wasn't it eradicated completely in the 80s?

Yes, but that was done by vaccinating everyone and thus breaking the cycle of transmission. Smallpox has no animal hosts (lots of mammalian species have their own version instead), so after no humans were able to get it, the disease died out. If you got it today somehow, they'd pump you full of antiviral drugs and hope for the best, but they wouldn't be able to actually end the infection, as the word "cure" would suggest.

Thanks for the explanation :)

I am sorry Josh, but you are not entitled to have sex. People are allowed to cancel plans and get out of dates for any reasons, including your HIV diagnosis.

How come that not wanting to risk getting STDs or HIV infection is considered a negative thing?

I believe OP was more making the statement that he appreciates when people state that they're uncomfortable with it. As any grown adult should be able to do.

I did not read his comment as entitled. He is complaining about the status quo.

I agree with other comments. He was careful with his wording to reflect how he feels, without blaming others.

I see his post as lamenting the fact that people are not honest with him about how his HIV status affects them. Instead, they choose to lie to him and beat around the bush.

Your comment at OPs seem to be misaligned, or rather very aligned - you're arguing againt his point but you seem in agreement.

I think this will have the effect you're asking for, just maybe not in the timeframe you want.

If we can effectively make HIV non-transmissible then it shouldn't take very long to wipe the virus out (or at least come very close) and the stigma will no longer apply.

The biggest issue if we can make it non-transmissible (which we are already to that point for first-world serodiscordant couples, to a large degree) is getting it to the third world, where not only is there no money for this, but there's some pretty vile things going on that worsen the spread.

I don't think efforts of creating a cure are curbed by effective means of treating the infection.

The cure seems to be decades in the future though, so I don't really see an alternative to pushing for both.

What does stigma mean in this context? I was not aware of this term being used in this context.

It means an unwarranted view of an "undetectable" individual as a source of HIV transmission.

That is, an individual that is "undetectable" (formerly HIV+ but underwent treatment so that the viral load is not detectable) is still viewed as a potential source of HIV transmission, despite assurances from the medical community that an undetectable load is unlikely to be a source of transmission.

Ok, thanks for the explanation.

Is it wrong for potential partners to want to know if someone carries any sexually transmitted virus (HIV or otherwise)?

Is this basically just saying trust the opinion of the current medical establishment?

I feel bad for OP here. It sucks and you deserve the same love and affection that everyone else does. Your needs and desires don't change just because you have this disease. I would like to point out that while PrEP might not do it, a vaccine might. And a vaccine seems very plausible in the near future given how close we've come with drugs.

Why should anybody take any chances when another person is one swipe away?

To be nitpicky, but if there is a vaccine in the future, antigen testing will likely show that you are HIV antibody positive.

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