When to start HIV meds

[rawTOP]

The bug chasing and gift giving sections on this site are quite popular, so the timing of when poz guys go on meds is directly relevant to a lot of the guys on the site since it's kinda obvious that the longer you stay off meds the more bug chasers you're likely to poz.

The main study that people cite when they tell you to go on meds immediately after infection is the START study. You can read the result of the study here:

Initiation of Antiretroviral Therapy in Early Asymptomatic HIV Infection

That study divided people into 1) start right away, or 2) start when the person's CD4 (t-cell count) was around 350 (which is above 250 where the person would be diagnosed with AIDS).

Most medical professionals will tell you that you improve your odds of staying healthy by going on meds as quickly as possible. And that's technically true, but the benefits of going on meds quickly aren't as large as they often imply.

The first thing to realize is that the word "significant" in a scientific study has a different meaning than it does in everyday use. Statistical significance is directly related to the sample size used in the study (the number of people being studied). The rule of thumb is that sample sizes of 1,000 or more will result in statistically significant results. The START study had a sample size of 4,685. Because they have a sample size 4x bigger than is needed all of their results are statistically significant. So when you read the results of the study (or read someone talking about the study) you can ignore the word "significant" - in this context it doesn't mean what it means when it's used in everyday conversation. Since all the results are statistically significant, it's literally meaningless. It's like reiterating "…and that was concluded off of a large study".

For starters their big measure was whether someone had significant health complications over the study period which was 3 years on average. 42 people in the immediate start had complications, 96 in the delayed start had complications (page 799). So yes, you're a bit more than twice as likely to have complications if you delay the start. BUT 42/2326 = 1.8% over 3 years (so 0.6% per year) vs 96/2359 = 4.1% over 3 years (so 1.4% per year). If it were a matter of doubling a 10% risk, I could see the point. And from a public health perspective I get the point. But from a personal perspective a 1.4% chance of a complication each year isn't that much.

They actually say as much…

Quote

Although the relative reduction in the risk of the primary end point was large in the immediate-initiation group, the absolute differences were fairly small for most subgroups, which may mean that some low-risk patients may still choose to defer antiretroviral therapy. (pages 804-805)

So if you're someone who already has serious health issues that would be complicated by HIV - absolutely go on meds quickly, because every little bit can help you. Or if you want to make sure you don't transmit HIV to anyone else - absolutely go on meds quickly. But apart from issues like that - it's your body, your health - you're allowed to choose not to go on meds right away. Do what makes the most sense in your situation.

The other issue with the study was that six of the (numerous) sponsors of the study were pharmaceutical companies. Most of the discussion of this study makes it sound like it's imperative that people start HIV meds immediately. I worked in pharmaceutical marketing in the late 90s. We recruited "thought leaders" who would push other doctors to do what the pharmaceutical companies wanted them to do. The fact that a study that said that "the absolute differences were fairly small" is getting spun to "you must go on meds immediately" - that's doctors saying what the pharma companies want them to say. The pharma companies got their thought leaders to convince other doctors to say that. When it's done well the process is really subtle. I know because that was literally our job (for other drugs/conditions) - the company I worked for published journal articles for pharma companies and organized promotional and non-promotional meetings for them. The non-promotional meetings were often fairly ethical (e.g. getting the word out to busy doctors about a new, effective drug). But in hindsight the promotional meetings and the journal articles (where bad results are never published) were usually really unethical. The promotional meetings were often at ski resorts, or golf clubs. Even the quickie follow-up meetings were at really expensive restaurants.

I should also mention that the START study was published in 2015 and there's been more research since then that's pointed to other possible benefits of starting meds early. But the research I'm aware of is mostly about whether people can be completely cured of HIV at some point in the future and those studies have hinted that there's the possibility that having gone on meds quickly will help in that respect - but AFAIK there hasn't been any firm conclusions on that since only about two people have ever been permanently cured of HIV (via a procedure with a 20% fatality rate - they were cancer patients so the risk made sense).

And I want to make clear - I'm absolutely opposed to the "never take meds" folks. Yes, you have the right to commit suicide, but I'm never going to encourage someone to do so. And it literally is suicide to not ever take meds, or to take them haphazardly once you need to start them. The medical/scientific community generally agrees that you absolutely should go on them when your CD4 drops into the 350 to 500 range. Please go on at least by that point. A 1.4% per year risk of mostly non-fatal problems isn't crazy. But in the mid-90s (before ARVs came out) I cared for a lover who died of AIDS - it's not pretty and it is literally suicidal to want that experience when there are meds to prevent it.

As a bottom line I'll repeat - it's your body - make the informed decision that you're most comfortable with. Your doctor should not make you feel like you're crazy if you want to wait a bit to go on meds (provided your CD4 stays over the 350-500 range).

[Guest]

Might a reason for the advice to start med's quickly be, to have someone with HIV become undetectable so they can't spread it further?

[ErosWired]

On 6/15/2022 at 10:50 AM, rawTOP said:

Or if you want to make sure you don't transmit HIV to anyone else - absolutely go on meds quickly.

You could have stopped with this and saved all the rest of the “it’s your body, your right, your choice” equivocation. To the men reading your post looking for a rationale not to take ART, I would say this:

I don’t just have HIV. I have AIDS. I have it because another man fucked it into me. I choose to believe he was unaware of his infection at the time, because the idea that a man could have been so callous, so selfish, so careless, and so ethically bereft that he consciously risked my life for a fuck would forever blacken my outlook on humanity. It is only by a quirk of medical chance that his action did not cause my death.

If a man gets HIV, playtime’s fucking over. You don’t get to act like nothing has changed, because everything has changed. Some of the changes aren’t obvious, but become evident in subtle ways as you try to live what ought to be a normal life. Other changes are so obvious you can’t even pretend to overlook them, and how you live with sex is one of them.

But it’s not just how you live with sex, it’s how you live with yourself. And the knowledge that your body is now a hazmat zone and you have the potential to kill someone or cause them lasting suffering for which there is no cure. If you have any sense of personal responsibility, any scruples, any ethics, any compassion for other people, any regard for anyone but yourself, this is a no-brainer - you don’t take the risk. You don’t have the right to take the risk. It’s not your body you’re risking at that point, it’s theirs. Even if they’re asking for it, you still don’t have the right to do that to them.

If you’re going to fuck other people, and the men reading this are a community of high-risk fuckers, then yes, you get on the meds right away, because everything isn’t always about you.

But let’s talk for a minute about you. RawTOP cites sources saying that you can hold off on getting on ART until your CD4 count hits 350. What his information doesn’t share is that a normal healthy human immune system’s CD4 count is between 500 and 1000. By the time you hit 350, your immune system is already compromised. It has already suffered damage that may or may not be reversible. You will already be at higher risk for infection, suffer greater effects from chronic inflammation, and shave some time off your life expectancy. What’s more, 350 is only 150 points above 200 - the level considered diagnostic for AIDS. It’s not uncommon for my count to fluctuate in the 100-150 range between checks.

So you can fuck around with your health and knowingly let your body be damaged just so you can thumb your nose at the pharmaceutical companies, or you can start taking the medicine proven to preserve your normal immune function into the future. I know what I would have done if I had had the option.

 I didn’t get the option. The tests failed me. They kept giving me false negatives until I was nearly dead with it. If you’re fortunate enough to catch your infection early, there’s no good excuse to waste time getting on meds, because the Enemy Virus is sure as hell not going to waste one second trying to kill you.

Well, some people say, relative benefits, yadda yadda. - no. If your house is burning down, nobody argues about the relative benefits of letting it burn for a while - you call the fucking fire department. The virus sets to work killing you the instant it enters your body, and it doesn’t stop unless and until you force it to. Your body is your house, and it’s burning.

So the question is, what’s the real reason you don’t want to take the medication? For many on here, if what we read is any guide, the decision has to do with indulging in an unhealthy fetish; or with misguided distrust of science or authority or both; with a lack of information; with pigheaded laziness; or with a sociopathic desire to inflict suffering on others (expressions of which one likes to hope are not acted upon). Not a lot of good reasons in there.

Bottom line: If you don’t love yourself enough to do it for you, do it for the person whose life you won’t destroy when you don’t pass on your disease. Take the responsibility. Be a man about it.

I’m a 7 1/2 year AIDS survivor. In seven and a half years, I have missed exactly one dose of ART. One. I’m still alive. If I can do it, so can you.

Edited June 22, 2022 by ErosWired

[NEDenver]

As someone who does statistical stuff all the time, statistical significance is about more than just the sample size.  The statement that something is statistically significant means that the results are unlikely to have happened from random chance.  There is manipulation that is possible with any statistical analysis, and being wary of pharmaceutical companies is warranted, but also the gay community and particularly the HIV positive community were very critical of pharmaceutical companies being too slow to act, so it's a little hard to criticize both for not acting and for acting. 

 

[funpozbottom]

As usual, I pretty much agree with @ErosWired .

HIV, and all the other STD's for that matter, are not Pokemon. You do not have to "catch them all".  There is no fame or glory in catching them.  There is, however, irreparable damage done to the body if left untreated. The only medical reason I can think of for delaying treatment is if an individual has pre-existing kidney / liver problems that may be exacerbated by the additional strain to their function incurred by starting on meds. But even then, I think the doctors would probably want to start meds as early as possible to keep HIV well controlled and prevent opportunistic infections that could further compromise the body.  ( I think potential liver / kidney problems is where the rationale that it's better to wait to start treatment came from. Early classes of meds did a lot more damage to the body than current meds, and as drug regimens continue to be refined, damage to liver and kidneys will hopefully be minimized.)  So, from a personal health stand point, I think starting on meds early would probably be the better option for almost everyone.

There is also the viral load and reservoir to consider. The sooner treatment is started, the faster the viral load is diminished, and the smaller the reservoir is within the body, which means the virus would be slower to rebound if treatment were ever stopped.

And one needs to consider how being poz affects a sex partner. An uncontrolled viral load puts any sex partner at risk of infection. There is currently a push to get more people on PREP for prevention, getting people tested,  and getting people to understand that U=U.  Suggesting that infected individuals should wait to start treatment undermines those efforts and may perpetuate stigma attached to being poz, especially for those who are now undetectable.  

With the exception of the insurance industry, I don't see anyone who benefits from suggesting that infected individuals could delaying treatment.

[meeko313]

yikes. the amount of judgement and preaching to people about what to do with their own bodies happening here is really fucking gross.

the whole context of the original post was from a BUGCHASING perspective. people that LIKE hiv, and often enjoy spreading it to OTHER bugchasers. consenting, mutual sharing of this kink. not putting non-consenting people at risk. you do not get to tell people what personal health choices to make, or try to shame them into not participating in their kink because YOU are uncomfortable with it.

this post did not ask for your puritan hand-wringing. it did not ask for your "moral" opinions about the subject. it's simply a post for bugchasers to discuss the feasibility of delaying meds, and the dangers, statistically, of doing so. unfortunately i don't have enough education in that area to actually add much to what the discussion is supposed to be about, but fucking wow. i just had to say something.

you'd think lgbt+ people, of all communities, would know what it's like to get such absurdly aggressive, strawmanning, moralistic reactions to their attractions. do better.

[ErosWired]

47 minutes ago, meeko313 said:

yikes. the amount of judgement and preaching to people about what to do with their own bodies happening here is really fucking gross.

the whole context of the original post was from a BUGCHASING perspective. people that LIKE hiv, and often enjoy spreading it to OTHER bugchasers. consenting, mutual sharing of this kink. not putting non-consenting people at risk. you do not get to tell people what personal health choices to make, or try to shame them into not participating in their kink because YOU are uncomfortable with it.

this post did not ask for your puritan hand-wringing. it did not ask for your "moral" opinions about the subject. it's simply a post for bugchasers to discuss the feasibility of delaying meds, and the dangers, statistically, of doing so. unfortunately i don't have enough education in that area to actually add much to what the discussion is supposed to be about, but fucking wow. i just had to say something.

you'd think lgbt+ people, of all communities, would know what it's like to get such absurdly aggressive, strawmanning, moralistic reactions to their attractions. do better.

Except that the site owner chose to post this thread in the HIV & Sexual Health section, which is the one place on this site where we specifically don’t pander to bugchasing at the expense of human life. (Actually, since the new rules came out I thought that was true everywhere except the bugchasing section; I am frankly not sure how the site owner squares this rather enabling post with the restriction, but that’s his affair.) Had he posted it for the benefit of the lunatics who “like HIV” in the bugchasing section where such people go to wallow in their insanity, I would not have posted a reply. For whatever reason, he did not.

I posted my lived experience, not my moral opinions, but all persons in a sane society agree - must agree - that one individual has no right to bring permanent, debilitating, and potentially deadly harm to another.  That’s fundamental, not debatable. Whether you have the “right to commit suicide” is a matter for moral debate, but just because a thing may not be illegal does not mean it should not be discouraged.

Do you have HIV? Are you an AIDS survivor? Do you have to take a pill every day of your life just to enjoy the privilege of being alive? Do you have to struggle to keep yourself healthy? Are you watching your own body gradually break down in front of the mirror? Have you ever been rejected out-of-hand for a fuck just because you were positive even though you were undetectable? Have you ever - ever once - worried about whether you having sex with someone would harm them?

If you can’t answer yes to any of those questions, your bleating about your personal choices is meaningless here because you’re not talking about people’s health or the reality of living with HIV. You’re talking about wants, not needs, and that’s where the rubber meets the road.

Edited June 23, 2022 by ErosWired

[funpozbottom]

13 hours ago, meeko313 said:

yikes. the amount of judgement and preaching to people about what to do with their own bodies happening here is really fucking gross.

the whole context of the original post was from a BUGCHASING perspective. people that LIKE hiv, and often enjoy spreading it to OTHER bugchasers. consenting, mutual sharing of this kink. not putting non-consenting people at risk. you do not get to tell people what personal health choices to make, or try to shame them into not participating in their kink because YOU are uncomfortable with it.

this post did not ask for your puritan hand-wringing. it did not ask for your "moral" opinions about the subject. it's simply a post for bugchasers to discuss the feasibility of delaying meds, and the dangers, statistically, of doing so. unfortunately i don't have enough education in that area to actually add much to what the discussion is supposed to be about, but fucking wow. i just had to say something.

you'd think lgbt+ people, of all communities, would know what it's like to get such absurdly aggressive, strawmanning, moralistic reactions to their attractions. do better.

 

While the impetus for the original post may have been related to bugchasing, that fetish was not the focus of the study cited in the post. I don't think it's being "judgemental" to remind people that there are other factors to consider beyond the one narrow focus of the study when making decisions about one's health. It's also not "puritanical hand-wringing" (gotta say -- that's some kinky shit right there) to point out shortcomings within a study that may reduce it's relevance to the subject being discussed. You can make any decision you want about when and whether to take meds, but I think an individual should have access to a full range of sources and not make a decision based on only one. I would hate to keep silent about a subject I have some experience in simply because someone might not like my opinion, and then have that person later lament: " Why didn't anyone tell me it would be this way?"

For full disclosure, I am poz. I had AIDS -- my CD4 count was 12 when I was diagnosed. I did not want to be infected, and did try to protect myself from it, but if you slip up with the wrong person, it only takes once. I don't understand the whole bugchasing mystique. I don't read the bugchasing section as it holds no interest to me. I respond to this thread solely as it relates to a person's health.

That said, since you feel the original post was from a bugchasing perspective, I have to say, I didn't see it that way, although it was at times ambiguous and could be read that way. As for the study mentioned, my opinion is that it doesn't provides much useful information to someone interested in pozzing.  First off, it's over 7 years old. While digging up and recycling older studies is a very "internet" thing to do, I don't think it enhances the conversation. Second, even though participants were monitored and tested through the study, no data is provided on how long an individual can go without meds before reaching the stage of AIDS. It also doesn't mention the effect on viral load as treatment is delayed. Knowing those things might be of interest for someone interested in pozzing, but even if it did provide data on those, the only way you're going to know how long you can delay treatment is if you are tested regularly so the illness can be monitored. Also, keep in mind that the focus of the study was whether an individual is more likely to suffer a major illness before reaching AIDS if treatment is delayed. The fact you may infer that an individual is no more likely to suffer catastrophic illness by delaying treatment, does not mean the study is giving a green light, or advocating for, delayed treatment.  It simply suggests that HIV without treatment is a slow decline until AIDS. And you probably already knew that.

 

[Guest]

7 hours ago, funpozbottom said:

but if you slip up with the wrong person

 The 'wrong' person you had sex with didn't give you AIDS, the HIV virus did.  

The person you chose to have (unprotected) sex with might not have known he or she was HIV-positive. HIV is a virus and doesn't choose, neither does it have preferences nor does it discriminate, just like any other viral infection it's just there.
People can protect themselves against infection by using condoms or nowadays by going on PrEP (if they can afford it, which may vary depending on where/in which country they live.

For a large part taking a risk or protecting oneself is then one's own responsibility. There is no 'wrong' here, just bad luck and choosing to bareback or not- unless a condom broke or the (infected) Top purposely removed it during sex - which would make that guy a psychopath if he knew his status.

 Imo at times there may be too much emphasis on matters that suggest blame to the level of criminal responsibility;
The gay community has suffered from this when the HIV pandemic started as it was seen as 'our own fault' for doing nothing more than act naturally on our instincts and we didn't know HIV was out there, what it was or how it is transmitted. 

 

22 hours ago, ErosWired said:

 but all persons in a sane society agree - must agree - that one individual has no right to bring permanent, debilitating, and potentially deadly harm to another.

Agreed.
Not withstanding this, I feel the best option to stop this pandemic and people not becoming HIV-positive is having them protect themselves and helping them do so.

PrEP is a game-changer and I'd like it - including the necessary blood testing and medical supervision by a professional - to be available at no cost, or at the most at a nominal fee comparable to the cost of condoms everywhere.

 

On 6/22/2022 at 7:55 PM, ErosWired said:

the idea that a man could have been so callous, so selfish, so careless, and so ethically bereft that he consciously risked my life for a fuck would forever blacken my outlook on humanity

I can't imagine how it has felt and is feeling for you and I can only try to sympathise.
Most importantly I hope at the moment you are doing ok on meds and live a happy life.

To me words like callous, selfish, careless and calling two guys having sex un-ethical because they merely chose to forego condoms is too harsh.

 

On 6/15/2022 at 5:50 PM, rawTOP said:

The bug chasing and gift giving sections on this site are quite popular, so the timing of when poz guys go on meds is directly relevant to a lot of the guys on the site since it's kinda obvious that the longer you stay off meds the more bug chasers you're likely to poz.

The main study that people cite when they tell you to go on meds immediately after infection is the START study. You can read the result of the study here:

Initiation of Antiretroviral Therapy in Early Asymptomatic HIV Infection

That study divided people into 1) start right away, or 2) start when the person's CD4 (t-cell count) was around 350 (which is above 250 where the person would be diagnosed with AIDS).

Most medical professionals will tell you that you improve your odds of staying healthy by going on meds as quickly as possible. And that's technically true, but the benefits of going on meds quickly aren't as large as they often imply.

The first thing to realize is that the word "significant" in a scientific study has a different meaning than it does in everyday use. Statistical significance is directly related to the sample size used in the study (the number of people being studied). The rule of thumb is that sample sizes of 1,000 or more will result in statistically significant results. The START study had a sample size of 4,685. Because they have a sample size 4x bigger than is needed all of their results are statistically significant. So when you read the results of the study (or read someone talking about the study) you can ignore the word "significant" - in this context it doesn't mean what it means when it's used in everyday conversation. Since all the results are statistically significant, it's literally meaningless. It's like reiterating "…and that was concluded off of a large study".

For starters their big measure was whether someone had significant health complications over the study period which was 3 years on average. 42 people in the immediate start had complications, 96 in the delayed start had complications (page 799). So yes, you're a bit more than twice as likely to have complications if you delay the start. BUT 42/2326 = 1.8% over 3 years (so 0.6% per year) vs 96/2359 = 4.1% over 3 years (so 1.4% per year). If it were a matter of doubling a 10% risk, I could see the point. And from a public health perspective I get the point. But from a personal perspective a 1.4% chance of a complication each year isn't that much.

They actually say as much…

So if you're someone who already has serious health issues that would be complicated by HIV - absolutely go on meds quickly, because every little bit can help you. Or if you want to make sure you don't transmit HIV to anyone else - absolutely go on meds quickly. But apart from issues like that - it's your body, your health - you're allowed to choose not to go on meds right away. Do what makes the most sense in your situation.

The other issue with the study was that six of the (numerous) sponsors of the study were pharmaceutical companies. Most of the discussion of this study makes it sound like it's imperative that people start HIV meds immediately. I worked in pharmaceutical marketing in the late 90s. We recruited "thought leaders" who would push other doctors to do what the pharmaceutical companies wanted them to do. The fact that a study that said that "the absolute differences were fairly small" is getting spun to "you must go on meds immediately" - that's doctors saying what the pharma companies want them to say. The pharma companies got their thought leaders to convince other doctors to say that. When it's done well the process is really subtle. I know because that was literally our job (for other drugs/conditions) - the company I worked for published journal articles for pharma companies and organized promotional and non-promotional meetings for them. The non-promotional meetings were often fairly ethical (e.g. getting the word out to busy doctors about a new, effective drug). But in hindsight the promotional meetings and the journal articles (where bad results are never published) were usually really unethical. The promotional meetings were often at ski resorts, or golf clubs. Even the quickie follow-up meetings were at really expensive restaurants.

I should also mention that the START study was published in 2015 and there's been more research since then that's pointed to other possible benefits of starting meds early. But the research I'm aware of is mostly about whether people can be completely cured of HIV at some point in the future and those studies have hinted that there's the possibility that having gone on meds quickly will help in that respect - but AFAIK there hasn't been any firm conclusions on that since only about two people have ever been permanently cured of HIV (via a procedure with a 20% fatality rate - they were cancer patients so the risk made sense).

And I want to make clear - I'm absolutely opposed to the "never take meds" folks. Yes, you have the right to commit suicide, but I'm never going to encourage someone to do so. And it literally is suicide to not ever take meds, or to take them haphazardly once you need to start them. The medical/scientific community generally agrees that you absolutely should go on them when your CD4 drops into the 350 to 500 range. Please go on at least by that point. A 1.4% per year risk of mostly non-fatal problems isn't crazy. But in the mid-90s (before ARVs came out) I cared for a lover who died of AIDS - it's not pretty and it is literally suicidal to want that experience when there are meds to prevent it.

As a bottom line I'll repeat - it's your body - make the informed decision that you're most comfortable with. Your doctor should not make you feel like you're crazy if you want to wait a bit to go on meds (provided your CD4 stays over the 350-500 range).

Thank you for your article @rawTOP.

it's informative and you give people factual information so they can make an informed choice.
When someone gets tested positive taking the time - if their medical situation allows it - to discuss the options with their doctor might also have the added benefit of allowing the time to come to terms with the fact they've become infected - on an emotional level.

I've dated HIV-positive men (on medication and undetectable) that reacted confused or surprised when voicing my opinion it was purely bad luck they got infected and not blaming them, or joining them in blaming the guy that infected them.

To me it doesn't seem helpful when people keep going in these circles of emotional guilt about sex. And I may even go so far that as far as 'gifting' or 'bug-chasing' exist outside the realm of fantasy perhaps this guilt-trip might - maybe - be responsible for toying with this idea of 'evil'.

Imagine there's no heaven
It's easy if you try
No hell below us
Above us, only sky

And besides 'heaven' or hell, we live in modern times where we succeeded in eliminating countless of viruses and bacteria through science. Puritan attitudes did not help humanity in doing so.

Peace.

[rawTOP]

On 6/22/2022 at 1:55 PM, ErosWired said:

But let’s talk for a minute about you. RawTOP cites sources saying that you can hold off on getting on ART until your CD4 count hits 350. What his information doesn’t share is that a normal healthy human immune system’s CD4 count is between 500 and 1000. By the time you hit 350, your immune system is already compromised. It has already suffered damage that may or may not be reversible. You will already be at higher risk for infection, suffer greater effects from chronic inflammation, and shave some time off your life expectancy. What’s more, 350 is only 150 points above 200 - the level considered diagnostic for AIDS. It’s not uncommon for my count to fluctuate in the 100-150 range between checks.
 

Actually that's not what I said. I said guys should absolutely go on ARVs when their viral load was between 350 and 500. Which means they probably should go on when they're around 500 (if they didn't go on sooner). And I repeatedly mentioned 350 because that was the threshold used by the study.

It's not like CD4 counts go in predictable straight lines. So someone might go below 500 because they have a cold or something and then be up over 500 on the next test. But when the trend is clearly below 500 guys should go on meds IMHO. As I understand it that was the standard model of care in most of Europe for a very long time and it works pretty well. It's just START showed that going on meds immediately was marginally better for the individual, and substantially better from an overall public health perspective.

I'm so against the idea intentionally progressing to AIDS that I've banned it from the site. I think I've made it pretty clear that I view that particular fetish as literally suicidal. The point with this post is that there's a gray area in between going on immediately and "no meds ever" and it's not an unreasonable option for some guys.

As far as your "You will already be at higher risk for…" statement - my point is that the START study was the major study behind statements like that and the conclusion was that "the absolute differences were fairly small". If you have other studies that show otherwise, please share them.

 

On 6/22/2022 at 2:11 PM, NEDenver said:

As someone who does statistical stuff all the time, statistical significance is about more than just the sample size.  The statement that something is statistically significant means that the results are unlikely to have happened from random chance.  There is manipulation that is possible with any statistical analysis, and being wary of pharmaceutical companies is warranted, but also the gay community and particularly the HIV positive community were very critical of pharmaceutical companies being too slow to act, so it's a little hard to criticize both for not acting and for acting.

With a larger sample size your confidence interval shrinks. When your confidence interval shrinks to the point that there's no overlap in the groups being compared, then the finding is "statistically significant". Ergo, statistical significance is directly related to sample size.

In this case yes, 1.4% is > 2x 0.6%. But my point is that both are extremely small. (1.4% wouldn't be small if we were talking about an outcome of death, but we're just talking about "complications".)

By focusing on the statistical significance and not the absolute risk being discussed you're not seeing for the forest for the trees.

The doubling from 0.6 to 1.4 is important from a general public health perspective, but it's less important from the perspective of an individual.

 

On 6/23/2022 at 7:22 AM, ErosWired said:

Except that the site owner chose to post this thread in the HIV & Sexual Health section, which is the one place on this site where we specifically don’t pander to bugchasing at the expense of human life. (Actually, since the new rules came out I thought that was true everywhere except the bugchasing section; I am frankly not sure how the site owner squares this rather enabling post with the restriction, but that’s his affair.) Had he posted it for the benefit of the lunatics who “like HIV” in the bugchasing section where such people go to wallow in their insanity, I would not have posted a reply. For whatever reason, he did not.

My impetus for posting it in Sexual Health is because the poz fetish crowd deserves sexual health as much as everyone else. Calling them "lunatics" is completely unproductive. I'm seeing a disturbing trend of making these issues black and white - that there are two and only two camps - 1) go on meds immediately or 2) "never take meds". The data says there's a middle ground where you can delay without significantly risking your own health. Guys who choose to wait need to understand the numbers so they know the point where they really need to get themselves on meds (before they have actual complications). The purpose of my post was to present a risk reduction strategy that some guys might choose over intentionally progressing to AIDS. If I can get those guys to move from thinking in terms of "never take meds" to "delay while my CD4 is good" - that's a huge win. Those guys are unlikely to ever switch to "go on meds right away", but "delay for a while" is an achievable goal with that group, IMHO.

[1hornyjohn]

I started meds the same day as I tested poz.

Went back about 4 weeks later and tested Undetectable.  Have been that for 2 and half years now..

[ErosWired]

4 hours ago, BareLover666 said:

The 'wrong' person you had sex with didn't give you AIDS, the HIV virus did.

With respect, that’s like saying the guy with the gun didn’t shoot you, the gun did. When you have HIV, your body has become a de facto loaded weapon. Which is why this:

4 hours ago, BareLover666 said:

calling two guys having sex un-ethical because they merely chose to forego condoms is too harsh.

is not what I said or implied. It has nothing to do with deciding to forego condoms, and everything to do with deciding to forego medication - which is the subject of this topic. If a guy wants to indulge his bugchasing fetish as fantasy by taking raw cock from HIV-positive men, that’s his paraphilia to deal with. If a poz guy gets off on a fantasy of giving someone else a disease, that’s a paraphilia that would be considered abnormal by any professional psychologist, but it caused no harm if the guy can’t actually transmit the disease. The poz guy who fucks him has a responsibility to ensure that his own disease does not transmit. Anyone who says he has no responsibility to prevent his known contagious disease from infecting other people is, yes, unethical. The fact that making other people sick is your sexual kink doesn’t absolve that in any way. And placing one’s sexual gratification over another’s well-being is, yes, selfish.

15 minutes ago, rawTOP said:

The purpose of my post was to present a risk reduction strategy that some guys might choose over intentionally progressing to AIDS. If I can get those guys to move from thinking in terms of "never take meds" to "delay while my CD4 is good" - that's a huge win. Those guys are unlikely to ever switch to "go on meds right away", but "delay for a while" is an achievable goal with that group, IMHO.

In attempting to address this either/or choice of meds or no meds at all, however, I would submit that your particular choice of rhetoric will likely have the effect of making those in the “delay for a while” camp significantly more likely to do so by providing them with a rationale they can cling to whether it is in their best interest or not. Your insider anecdote about Big Pharma in particular biases the argument - its implication is that the makers of life-saving drugs, and the HIV doctors who administer them, are not to be trusted. Yet the medications work, or none of us would be enjoying the bareback renaissance we’re in now. I certainly wouldn’t - I’d be dead.

While I find no fault in your intention, and commend it, I fear that when the total effect of the post is measured, across its total audience, the net effect will be to encourage meds hesitancy.

[rawTOP]

2 hours ago, ErosWired said:

Your insider anecdote about Big Pharma in particular biases the argument - its implication is that the makers of life-saving drugs, and the HIV doctors who administer them, are not to be trusted.

They aren't to be trusted - especially big pharma.

Just one simple example - Descovy should have been available for PrEP YEARS ago - everyone knew it was (more-or-less) the safer version of Truvada. But Gilead let people suffer side effects from Truvada in order to make more profits. They ran with Truvada as long as they could and then got Descovy approved for PrEP just in time so they could extend its patent and keep the cost of the drug high.

As far doctors… Here's a little bit of what's happened to me personally…

At one point I went to this gay doctor who treated a lot of HIV/AIDS patients. Literally every time I went to see him there was a pharma rep in his waiting room. It was completely obvious he was getting paid to prescribe meds that were the most profitable for the drug companies. Ethical docs don't take meetings with pharma reps - they go to educational / neutral sources to get their information. And from my time in pharma marketing - when a doctor like that is also recognized by his peers the pharma companies groom them to be "thought leaders". Those are the people who present even the "educational" seminars (aka "grand rounds" lectures). It's just in the "educational" sessions they have to use the generic name of the drug, not the brand name, and they have to also discuss other competing drugs (but guess which ones the thought leaders will say are best?)

And… I was a 26 year old kid when my lover was in the hospital with AIDS. A doctor had told me he needed his IV drugs in a certain order. When the nurse went to give him the meds one night the order she was giving them in seemed wrong to me. I questioned her and was told in no uncertain terms that she was right and I was wrong. I woke up the next morning (we had a private room in the hospital where I was sleeping with him) to find him in distress. His heart rate was up around 180 and it had been like that for hours. Basically she HAD given the drugs in the wrong order, and he had done the equivalent of running a marathon all night. He never really recovered from that. A few months later he died. And a year later ARVs came out. If he'd been able to survive another year he might  still be alive today. I was young and "white coat syndrome" was at play - I didn't make her stop and call a doctor over. But it taught me you can't trust medical professionals. It was probably unintentional - but she basically killed him.

Another first-hand case… When I was 18 I was told I had a seizure condition. A couple years later MRIs came out and I was told I had a brain tumor. Years went by and nothing happened and I didn't always see doctors to stay on top of it. Then I started having blackout spells again and a friend got me in to see the head of neurology at Memorial Sloan Kettering who was a brain tumor specialist (MSKCC is one of the top cancer hospitals in the world). She put me on dilantin and ordered a biopsy (which is a pretty high risk surgery) that was done by the Chief of Neurosurgery. The result was "scar tissue" but they continued to believe it was a brain tumor since tumors can be surrounded by scar tissue. Years went by again and when there was another round of blackouts she ordered another biopsy. This time the neurosurgeon was more aggressive, but the result was still scar tissue. 15 years had passed since I was first diagnosed with the tumor. I asked my doc whether the progression they saw could simply be higher MRI resolutions seeing more of the mass. She said no. I told her I wanted to go off dilantin since I was having problems with my gums (a well-known side effect of dilantin). She told me if I wanted to do that I needed to find another doctor. I took myself off dilantin (it has to be done over months), and eventually found myself another doctor. That doctor sent me to a radiologist who thought my case was unusual. He was the first radiologist in all those years who actually sat down and talked with me. I lent him 22 years of scans and he took a half a day to pour over them. His conclusion was that it was just a scar (as the biopsies found) and the apparent "growth" was due to 1) increased MRI sensitivity (I was right), and 2) MSKCC going in and making the situation worse by doing multiple biopsies. As far as my blackout spells - they're just simple vasovagal reactions - not epilepsy. I didn't need dilantin (and it was harming me - my oral health hasn't been the same since).

So I've personally witnessed a nurse at one of the top AIDS hospitals do something which essentially killed my lover. And I've experienced malpractice by doctors who are arguably some of the top in their specialty in the world. I now prefer doctors / NPs who graduated from state schools - they're less cocky and arrogant and are more likely to question their own judgement - which in my view is essential in healthcare.

So yeah if you think I don't think trust doctors - you're absolutely right. I question everything and only do what makes sense to me. If a doctor is bothered by my questions I find another doctor. I do take their opinion seriously, but I make the final decision.

And pharma companies - they're only in it for the money - not for saving lives. It's why there are so many treatments and so few cures.

[viking8x6]

1 hour ago, rawTOP said:

So yeah if you think I don't think trust doctors - you're absolutely right. I question everything and only do what makes sense to me. If a doctor is bothered by my questions I find another doctor. I do take their opinion seriously, but I make the final decision.

I'll second this. My choice of words wouldn't be that I don't trust them, rather that I'm aware that they are just people, too, and have their limitations and make mistakes sometimes. Medicine, for all its progress, is in many ways still more a practice than a science.

1 hour ago, rawTOP said:

And pharma companies - they're only in it for the money - not for saving lives.

True. Having worked in that industry also (not in marketing, thankfully), I can say that while many of the people in the industry are in it because they believe in saving lives or improving quality of life, the companies are in it for the money. Because capitalism.

[funpozbottom]

11 hours ago, BareLover666 said:

 The 'wrong' person you had sex with didn't give you AIDS, the HIV virus did.  

The person you chose to have (unprotected) sex with might not have known he or she was HIV-positive. HIV is a virus and doesn't choose, neither does it have preferences nor does it discriminate, just like any other viral infection it's just there.
People can protect themselves against infection by using condoms or nowadays by going on PrEP (if they can afford it, which may vary depending on where/in which country they live.

For a large part taking a risk or protecting oneself is then one's own responsibility. There is no 'wrong' here, just bad luck and choosing to bareback or not- unless a condom broke or the (infected) Top purposely removed it during sex - which would make that guy a psychopath if he knew his status.

 Imo at times there may be too much emphasis on matters that suggest blame to the level of criminal responsibility;
The gay community has suffered from this when the HIV pandemic started as it was seen as 'our own fault' for doing nothing more than act naturally on our instincts and we didn't know HIV was out there, what it was or how it is transmitted.

Oops. I guess I used the 'wrong' word there. I wasn't completely happy with it when I wrote it, but sometimes the word I'm looking for eludes me. What I ended up with was a weird variation of the saying of "being in the wrong place at the wrong time" which basically means something happened to you accidentally. You may not have that expression in Europe and/or not make the association to it which may have given what I wrote a different meaning.  I did not think there would be an issue with it since it was a personal side comment and didn't really have much to do with the commentary on the original post.  Also I never said anyone gave me AIDS.  I said I am poz. I said I had AIDS. I said I did not want to be infected. My phrasing may have been 'wrong', but again, it was a personal comment to give my perspective and did not deal directly with the comments on the post. I find it ironic that you say: "there may be too much emphasis on matters that suggest blame" and the only parts of my post you pick apart are my personal experience.