8 ms·
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 dissemina
by joshlittle 7y ago
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.
- xattt 7y agoTo be nitpicky, but if there is a vaccine in the future, antigen testing will likely show that you are HIV antibody positive.
- hughes 7y agoI 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?
- lazzlazzlazz 7y agoA 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.
- Loq 7y agoThe 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.
- celticninja 7y agoI'm not sure what contraception has to do with trust.
- Loq 7y agoClearly 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?
- Broken_Hippo 7y agoThese 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).
- Loq 7y agoThese 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.
- rmellow 7y agoCondoms break, despite whatever trust I have in them. That's when it's time for Plan B.
- shaki-dora 7y agoIn 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.
- allendoerfer 7y agoWhy don't you go to gay sex parties, if you want to have sex with men? scnr
- jliptzin 7y agoWhy can’t you go on prep?
- arcticfox 7y ago> 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).
- mdhen 7y agoYour 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.
- peterwwillis 7y agoWhat option doesn't exist? You can take PreP regardless of what kind of sex party you go to.
- gambiting 7y agoEspecially 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.
- deleted 7y ago[deleted]
- nkingsy 7y agoI don’t think they would tell you they were HIV positive if their goal was to infect you.
- scythe 7y agoThe 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.
- Fomite 7y agoOne 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.
- lubos 7y ago> where the per-capital annual health budget is $0.05 That surely must be a typo, right?
- Fomite 7y agoNo. Malaria, HIV, myriad diarrheal diseases, vaccines. You've got a nickel per person.
- lubos 7y agohttps://www.newvision.co.ug/new_vision/news/1479921/budget-sh7-700-ugandan-medicine https://www.newvision.co.ug/new_vision/news/1479921/budget-s... It says $15 per capita.
- Fomite 7y agoThen 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.
- shaki-dora 7y agoYour 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.
- spullara 7y agoOnly 1 viral disease has ever had a cure, Hepatitus C. That was only recently after a huge investment by Gilead.
- civilitty 7y agoSofosbuvir, 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.
- wbl 7y agoGilead 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.
- TheSpiceIsLife 7y agoIt 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.
- viraptor 7y agoI'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.
- TheSpiceIsLife 7y ago
- dillondoyle 7y agoMy 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.
- r_singh 7y agoThis genuinely seems ridiculous, what kind of peer pressure is that!
- azinman2 7y agoAll too common.
- peterwwillis 7y agoWell 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.
- cblades 7y agoAt 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.
- wan23 7y agoYou 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.
- Simple_Guy 7y agoWhy should anybody take any chances when another person is one swipe away?
- bayesian_horse 7y agoI 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.
- taneq 7y agoI 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.
- hmschreck 7y agoThe 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.
- johnisgood 7y agoI 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?
- Jedi72 7y agoYour comment at OPs seem to be misaligned, or rather very aligned - you're arguing againt his point but you seem in agreement.
- Ensorceled 7y agoI did not read his comment as entitled. He is complaining about the status quo.
- corndoge 7y agoI 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.
- fucking_tragedy 7y agoI 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.
- verulito 7y agoI agree with other comments. He was careful with his wording to reflect how he feels, without blaming others.
- tallanvor 7y agoI 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.
- rmellow 7y agoThe 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.
- boyband6666 7y agoExcept 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).
- mdhen 7y agoThe 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.
- golemiprague 7y agoWe don't really need cure because this disease is mainly limited to gay guys who don't use condoms. So the solution is just to use condom. I don't understand why we waste so much money and effort on a disease which is easily preventable and affect such a small part of the population, mainly because their lack of responsibility.
- rgrieselhuber 7y agoWhat does stigma mean in this context? I was not aware of this term being used in this context.
- rmellow 7y agoIt 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.
- rgrieselhuber 7y agoOk, 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?
- sandworm101 7y agoBut 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.
- i_cant_speel 7y agoThe stigma isn't necessary to continue working towards a cure.
- acct1771 7y agoNo, but top-level parent seems much more likely to donate to research because of that stigma, from what I'm reading here.
- aqme28 7y agoThere'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.
- NotSammyHagar 7y agoThink 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.
- verulito 7y agoI 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.