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Survivors of 1980s AIDS crisis reveal what happened to them

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In Honor of World AIDS Day

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From the role of lesbians to the vanishing of whole neighborhoods, real LGBTI people share their experiences

by Joe Morgan

Survivors of the 1980s AIDS crisis have shared accounts of their experiences.

As the UK celebrates LGBT History Month, users of Reddit revealed what it was like to be living in what felt like a constant state of tragedy.

Real LGBTI people remember the confusion, the lack of information, the lack of support from the government because of the suffering from the virus known only at the time as GRID (gay-related immune deficiency).

‘I’m a 62-year-old gay man. I thankfully made it through the epidemic that started in the early 80s and went right through the mid-90’s. You ask what it was like? I don’t know if I can even begin to tell you how many ways AIDS has affected my life, even though I never caught the virus,’ one user said.

‘By the early 80s, I had what I would consider a really large circle of friends and acquaintances and once the epidemic really started to hit, it was not uncommon to find out three, four or more people you knew had died each month. We set up informal and formal support groups to look after our friends who took sick. Feeding them when they would eat. Changing them. Washing them. Acting as go-between with families who “were concerned” about their sons, nephews, brothers, etc., but wouldn’t lend a hand to help because AIDS was, you know, icky.

‘After they passed, there were memorial services to plan with no real time to grieve because when one passed, you were needed somewhere else to begin the process all over again.

‘I kept a memory book/photo album of everyone I knew that died of AIDS. It’s quite large to say the least. Who were these guys? These were the people I had planned to grow old with. They were the family I had created and wanted to spend the rest of my life with as long as humanly possible but by the time I was in my late 40s, every one of them was gone except for two dear friends of mine.

‘All we have left of those days are each other, our memories and pictures. I hope that statement doesn’t come off as pitiful though. I am fit, active, healthy and you know what? I enjoy every single day of my life. I enjoy it because most of my friends can’t. In my own personal way, I want to honor their lives by living and enjoying mine.’

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Another user said: ‘It was flat out scary. every guy you met was like a possible time bomb. especially the early period when we knew very little about it – didn’t know if you could get it by kissing, by holding hands…

‘Then lots of your friends or friends of friends get sick and sicker and then die. And you never ever quit being really really fucking pissed off about the whole thing. I’m alive today due to sheer randomness.’

And another said: ‘If you were living in the Castro in San Francisco, everyone in the neighborhood was gay… So it wasn’t just your friends that were dying, it was your whole neighborhood. One day your mailman would be replaced, the next day that flower shop was gone… You wouldn’t be invited to the funeral, so it was just like people were disappearing.’

‘It was madness. It was terribly cruel,’ another Redditor said. ‘It was inexplicable and unexplained, for a very long time. Research was underfunded, and in many cases large institutions and public figures rooted for it to be happening. People died suddenly of unexplainable things. Toe fungus! Tongue thrush! Rashes. Eyes welling up with blood. Horrible shit.

‘Everyone knew it was hitting gay men, nobody knew what it was. They called it the gay cancer. People were very superstitious. I had handfuls of groceries and man lectured me on not pressing the elevator buttons with my nose because I could catch AIDS from it. Yes. That happened.’

A lesbian of the era said: ‘While I was not ‘at risk’ (per se, we know more these days), we all lost many good friends. It is true that there is a somewhat mystifying (to me) separatist attitude between some gay men and lesbians, especially back then, this tragic time really brought us together.

‘Sitting at the bedside of a terminally ill friend, and just holding their hand when everyone else was just terrified, was a gift I was one of those willing to give.

‘No one should die alone, and no one should be in the hospital on their death beds with family calling to say “this was gods punishment”. My friends and I, men and women, acted as a protective layer for ill friends, and companion to mutual friends juggling the same, difficult reality of trying to be there, and be strong when we were losing our family right and left. Difficult times, that should never be forgotten.’

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Another Redditor paid tribute to the role of lesbians, calling them ‘every bit as heroic as soldiers on the front lines of any war’.

‘These women walked directly into the fire and through it, and they did not have to. And that they did it even as some of the gay men they took care of treated them with bitchiness, scorn, and contempt.

‘It was, at the time, not at all unusual for gay men to snicker as the bull dyke walked into the bar with her overalls and flannels and fades. Much of the time, it was casual ribbing which they took in stride. But it could also be laced with acid, especially when lesbians began gravitating toward a bar that had until then catered largely to men.

‘When the AIDS crisis struck, it would be many of these same women who would go straight from their jobs during the day to acting as caregivers at night. Because most of them lacked medical degrees, they were generally relegated to the most unpleasant tasks: wiping up puke and shit, cleaning up houses and apartments neglected for weeks and months. But not being directly responsible for medical care also made them the most convenient targets for the devastating anger and rage these men felt – many who’d been abandoned by their own family and friends.

‘These women walked directly into the fire. They came to the aid of gay men even when it was unclear how easily the virus could be transmitted. Transmission via needlestick was still a concern, so they often wore two or three layers of latex gloves to protect themselves, but more than once I saw them, in their haste and frustration, dispense with the gloves so that they could check for fevers, or hold a hand that hung listlessly from the edge of a bed whose sheets they had just laundered.

‘They provided aid, comfort, and medical care to men withering away in hospices, men who’d already lost their lovers and friends to the disease and spent their last months in agony. They’d been abandoned by their own families, and were it not for lesbians – many if not most of them volunteers – they would have suffered alone. And when there was nothing more medicine could do for them and their lungs began to fill with fluid, it was often these same women who’d be left to administer enough morphine to release them, given to them by the doctor who had left the room and would return 15 minutes later to sign the certificate (a common practice at the time).

‘I knew a woman around that time who’d had at one point been making bank in construction. But at the outset of the AIDS crisis she had abandoned her career to pursue nursing instead, and was close to her degree when we were hanging out. She was a big, hearty drinker, and fortunately so was I. We’d been utterly thrashed at a bar once when someone whispered a fairly benign but nonetheless unwelcoming comment about her. Middle fingers were exchanged, and afterwards, furious and indignant, I asked her, Why do you do it? Why did you abandon a career to take care of these assholes who still won’t pay you any respect?

‘She cut me a surprisingly severe look, held it and said, “Honey, because no one else is going to do it.” I remember feeling ashamed after that, because my fury and indignation weren’t going to clean blood and puke off the floor; it wasn’t going to do the shit that needed to get done.

‘HIV killed my friends, took my lover from me, and tore up my life. During that time, I did what I could. But nothing I did then or have ever been called to do in my life puts me anywhere near the example set by the lesbians I knew in the 80s and 90s. I’ve felt obligated to remember what they did, and to make sure other people remember it too.’

Complete Article HERE!

My Sex Positive Doctrine

Have you ever wondered about the term, sex positive?

 
If you’re like me, you see it all over the place, especially on sex-related sites. I confess I use it way more often than I should. It’s become one of those industry buzzwords that has, over time, become so fuzzy around the edges that it’s now virtually meaningless. In fact, if the truth be known, I believe the term sex positive has been taken over by the sex Taliban who have made it a cover for their strict code of political correctness. Oddly enough, this is the very antithesis of its original meaning.

sex-on-the-brainIf you want to shame someone in the sex field—be it a sex worker, blogger or adult product manufacturer—you label that person as sex-negative. You may not know anything about that person other than you were offended by something they did, said or made. But still, you hurl the epithet as if you were exorcising a heretic. This is a very powerful tool for keeping people in my industry in line. But I’ve begun to wonder, who is setting themselves up as the arbiter of what is and what is not sex positive? I have to ask: What is the agenda? I mean, could compulsory ideological purity of some artificial standards of thought or behavior be “positive” anything? I say, no!

Like all good ideas that have gone bad due to overuse—or worse, sloppy use—the sex positive concept once had meaning that was life-affirming and enriching. Sex positive has been in the lexicon at least since the mid-1950s. It frequently appears in journals and research papers to describe a movement that examines and advocates for all the other beneficial aspects of sex beyond reproduction.

I’ve been using the term since 1981 when I opened my practice in Clinical Sexology and Sexual Health Care. The opening words of my mission statement read: “I affirm the fundamental goodness of sexuality in human life, both as a personal need and as an interpersonal bond.” Way back then, I was flush with my quixotic pursuit to stand steadfast against all the cultural pressures to negate or denigrate sexuality and pleasure. I dedicated myself to spreading the gospel that healthy attitudes toward sex not only affect a person’s sex life, but his/her ability to relate well with others.

This came relatively easy for me, because I’d learned something very important about evangelization in my life as a Catholic priest. (Another quixotic pursuit, but we’ll have to save the details of that misadventure for another time. Or you could read about it HERE!) One of the first things one learns in seminary is how to proselytize, to sow the seeds of a creed, and then nurture them taking root by endless repetition of the articles of faith. Of course there is a downside to this, too. Repetition fosters mindlessness, stifles creative thought, and worse makes things boring.Negative-Positive

But the creed statements of the world’s three great monotheistic religions are masterful works of theological art.

  • Barukh ata Adonai Eloheinu Melekh ha’olam!
  • Allaahu Akbar!
  • In the name of the Father, and the Son and the Holy Spirit!

Each contains the most profound kernel of religious truth the believer needs to know, but all are easy enough for a child to learn. And like I said, the secret is in the repetition. For the true devotee, these creedal statements are uttered dozens of times a day and to great effect.

Early on in my career as a sexologist, I decided to put the principles I learned in the Church into disseminating my new belief system. First, keep the message simple! I settled on: “Sex is Good—and Good Sex is Even Better.” This has been my mantra for decades. It contains everything you need to know about being sex positive, but it’s easy enough for a child to learn. Even now it soothes me to hear myself say these words. And it comforts me in the same way blessing myself did in my priestly days.

sex positiveDespite my apprehensions, I continue to be an apostle of the sex positive doctrine. I know that even though my industry has corrupted the concept, others have yet to hear the good news. And there’s something almost spiritual about seeing someone grasp the idea for the first time. Let me tell you about one such instance. Some time ago I was asked to address a group of doctors on the topic Health Care Concerns Of Sexually Diverse Populations. Unfortunately, just a handful of doctors attended the workshop—which was pretty disconcerting, considering all the work I’d put into the presentation. I guess that’s why kinksters and pervs, as well as your run-of-the-mill queer folk, are often frustrated in their search for sensitive and lifestyle-attuned healing and helping professionals.

Since the group of doctors attending was so small, I decided to ask them to pull their chairs in a circle so that our time together could be a bit more informal and intimate. Frankly, I’ve never found it easy talking to doctors about sex; and discussing kinky sex was surely going to be very tricky. So, I decided to start off as gently as I could. My opening remarks included the phrases “sex positive” and “kink positive.”

Sitting as close to my audience as I was, I could see at once that these fundamental concepts weren’t registering with them. I was astonished. Here was a group of physicians, each with a large urban practice. Could they really be this out of touch? I quickly checked in with them to see if my perception was correct. I was right! None of them had heard the term, sex positive. The two who hazarded a guess at its meaning thought it had something to do with being HIV+. I had my work cut out for me.

I decided to share my creed with them. “Sex is Good—and Good Sex is Even Better.” I asked them repeat it with me as if I were teaching a catechism to children. Surprisingly, they did so without resistance. After we repeated the mantra a couple more times, I exposed them to the sex positive doctrine unencumbered by political correctness.

  • Sex Is Good! Sex is a positive force in human development; the pursuit of pleasure, including sexual pleasure, is at the very foundation of a harmonious society.
  • And Good Sex Is Even Better! The individual makes that determination. For example, what I decide is good sex for me, may be boring sex to someone else. And their good sex may be hair-raising to me. In other words, consensual sexual expression is a basic human right regardless of the form that expression takes. And it’s not appropriate for me, or anyone else, to call into question someone else’s consensual affectional choices.
  • Sex Is Good! Everyone has a right to clear, unambiguous sexual health information. It must be presented in a nonjudgmental way, particularly from his or her health care providers. And sexual health encompasses a lot more then just disease prevention, and contraception.
  • And Good Sex Is Even Better! The focus is on the affirmative aspects of sexuality, like sexual pleasure. Sexual wellbeing is more than simply being able to perform. It also means taking responsibility for one’s eroticism as an integral part of one’s personality and involvement with others.
  • Sex Is Good! Each person is unique and that must be respected. Our aim as healing and helping professionals is to provide information and guidance that will help the individual approach his/her unique sexuality in a realistic and responsible manner. This will foster his/her independent growth, personal integrity, as well as provide a more joyful experience of living.
  • And Good Sex Is Even Better! Between the extremes of total sexual repression and relentless sexual pursuit, a person can find that unique place, where he/she is free to live a life of self-respect, enjoyment and love.

Finally I told them they ought to think creatively how they could adapt this concept to their own practice. It was up to each of them to make this creed their own. As it turned out, this primer was just the thing to open my planned discussion of health care for kinksters.

In a way this experience was a bit of a spiritual reawakening for me, too. Despite my misgivings about the contamination of the sex positive doctrine by malicious people bent on using it as a weapon against those they disagree with. I can’t tell you how refreshing it was to watch these sex positive novices hear, and then embrace, the message for the first time. It was nothing short of a religious experience.

These Volunteers Give Handjobs to the Severely Disabled

By Nelson Moura and Yun jie Zou

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Hand Angels helping Andy from his wheelchair into bed.

Andy is a muscular dystrophy patient who lives with his parents in southern Taiwan. Due to his severe physical disability, he was home-schooled and couldn’t leave his house alone, so never really had the opportunity to develop either an active social life or a romantic relationship.

When the Taiwanese NGO Hand Angel—an organization promoting the sexual rights of disabled people—first spoke to Andy, they realized this situation meant he’d also never been able to have a frank conversation with anyone about his sexuality. And as a young gay man who didn’t want to speak to his parents about his feelings, this wasn’t exactly the healthiest situation to be in.

So, over the course of a few months, representatives from the NGO counseled Andy online, helping him to understand his own sexuality and place in the world. Next, they “smuggled” him out of his house and took him to a motel for a handjob.

Taiwan—officially known as the Republic of China—has one of the best health systems in the world; its million or so disabled citizens receive some of the most thorough medical attention you’ll find, including everything from long-term care to traditional herbal medicine. What they don’t receive from this system, however, is any kind of aid when it comes to slightly more intimate issues, namely: orgasms.

It was for this reason that a group of social campaigners and volunteers took it upon themselves to create Hand Angel, an NGO whose main service is giving handjobs to the severely disabled. Members say that their work raises awareness of the fact that disabled people are often depicted as desexualized—as well as having their sexuality constantly neglected—despite the fact they share exactly the same desires as anybody else.

In the Netherlands, the national health system provides a grant scheme for people with disabilities to receive public money to pay for sexual services up to 12 times a year. In Taiwan, sex remains a taboo, and some Buddhists—the sovereign state’s primary religion—believe that someone suffering from a disability means they’re paying for bad deeds in a past life. So not the best mix for those like Andy, really.

“I can’t tell my parents that I also have sexual desires, and I can’t come out of the closet in front them,” he told me. “My family’s care puts lots of pressure [on me] and sabotages me from normal romantic relations.”

Vincent, the 50-year-old founder of Hand Angel, lost his legs to polio and says his disability allows him to better empathize with applicants’ needs, without any of the patronization disabled people can sometimes face. He emphasized that “disabled people share the same physical and emotional needs as any others, and therefore should have the right to pursue them.”

In order to decide who’s entitled to use their services, Hand Angel first assess an applicant’s level of disability. The person has to be recognized by the government as having a serious physical impairment, but can’t be mentally disabled. Once they’re cleared, the service is totally free, but each applicant can only receive three bouts of sexual stimulation.

Volunteers—the group of 10 people actually giving the handjobs—come from varied backgrounds; some are gay, some are straight, some are disabled, some are PhD students, some are social campaigners and some work in the media. It’s made very clear to me that these volunteers only use their hands for second-base kind of stuff—that hugging, caressing, and kissing on the face are all fine, but anything penetrative (fingering, oral sex, vaginal sex, and anal sex) is not.

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The hands of Hand Angel volunteers

When Hand Angel took Andy to the motel, the volunteer caressed him thoroughly and gave him a handjob. He described the intimacy being so intense that, for a minute, he believed he was in love. He knew it was only temporary, of course, but the experience provided him with an emotional connection he’d never felt before.

This is part of Hand Angel’s mission: not just providing a sexual service, but also bringing forth an emotional and social transformation in applicants.

“[Andy] was very introverted before, and didn’t really know how to interact with people,” said Vincent. “However, through months of talking online, I discovered something changed inside him. When our group was reported by the media and got lots of criticism, I saw Andy joined the public debate and argued with those [critical] internet users, trying to illustrate his opinions.”

In Taiwan, where a discussion of sexuality is restrained by strict moral codes, there was also plenty of mockery leveled at Hand Angel. Internet users starting posting comments like: “Do they also offer ‘Mouth Angels?'”; “I’m retarded; can I apply for Hand Angel service, too?”; and “Only three times in a lifetime?”

There even appeared to be negativity on an official level. The executive secretary of the Taipei United Social Wealth Alliance, Yi-Ting Hu, commented on the NGO, saying: “Speaking from personal opinion, I don’t think we need to bring up disabled people’s sexuality as an independent issue. There are more important and urgent problems we need to deal with. Don’t you think if you advocate their sexual rights, it is like another form of discrimination?”

Of course, he seemed to only be proving Hand Angels’ point; to suggest that advocating a disabled person’s sexual rights is a form of discrimination is, first, patronizing in itself, and secondly, just completely bizarre—how is consensually receiving a handjob in any way discriminatory?

Andy summed it up: “I didn’t feel I was the target of pity. The whole process was full of respect and equality. This might be deemed as controversial by society, but as long as you’re willing to look into it, what we desire is no different from others. Just ask yourself: do you need to consult your parents before having sex?”

Complete Article HERE!

This Sex Researcher Says Scientists Are Scared of Criticizing Monogamy

Monogamous people catch STDs just as often as swingers, but use condoms and get tested less often, a new survey suggests. Some sex researchers say a scholarly bias toward monogamy makes studies like this all too rare.

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People in monogamous relationships catch sexually transmitted diseases just as often as those in open relationships, a new survey suggests, largely due to infidelity spreading infections.

Reported in the current Journal of Sexual Medicine, the survey of 554 people found that monogamous couples are less likely to use condoms and get tested for STDs — even when they’re not being faithful to their partner.

“It turns out that when monogamous people cheat, they don’t seem to be very good about using condoms,” Justin Lehmiller, a psychologist at Ball State University and author of the study, told BuzzFeed News by email. “People in open relationships seem to take a lot of precautions to reduce their sexual health risks.”

The finding matters because people who think they are in monogamous relationships may face higher odds of an infection than they suspect, Lehmiller and other researchers told BuzzFeed News. And a stigma around open relationships that views such couples as irresponsible — even among researchers who conduct studies — may be skewing the evidence.

One in four of the 351 monogamous-relationship participants in Lehmiller’s survey said they had cheated on their partners, similar to rates of sexual infidelity reported in other surveys. About 1 in 5, whether monogamous or not, reported they had been diagnosed with an STD. Participants averaged between 26 to 27 years old, and most (70%) were women.

For people in supposedly exclusive relationships, Lehmiller said, “this risk is compounded by the fact that cheaters are less likely to get tested for (STDs), so when they pick something up, they are probably less likely to find out about it before passing it along.”

Psychologist Terri Conley of the University of Michigan told BuzzFeed News that the survey results echoed her team’s findings in a 2012 Journal of Sexual Medicine study that found people in open relationships were more likely to use condoms correctly in sexual encounters than people in exclusive relationships.

To bolster confidence in the results, Conley said, more funding is needed to test research subjects for STDs directly, rather than relying on their own notoriously unreliable self reporting of infections.

She compared just assuming that monogamous relationships are safer to assuming abstinence education will really stop teenagers from having sex: “Sure, abstinence would be great, but we know that isn’t reality.”

To put it another way, Lehmiller said, “there’s a potential danger in monogamy in that if your partner puts you at risk by cheating, you’re unlikely to find out until it’s too late.”

Sex researchers don’t want to criticize monogamy, Conley added, making funding a definitive study more difficult.

In a commentary on Lehmiller’s study in Journal of Sexual Medicine, Conley argued that sex researchers are “committed to the the belief that monogamy is best” and are “reluctant to consider contradictory evidence.”

“I’m not saying monogamy is bad,” Conley said. “What I found is that the level of hostility among reviewers to suggesting people in consensual non-monogamous relationships are more responsible is really over the top.”

Conley said she initially struggled to publish her 2012 study. When she changed the framing of its conclusion to find that “cheaters” in monogamous relationships were more irresponsible, the study was suddenly published.

“Even in a scientific review process, challenging researchers’ preconceived notions is perilous,” she wrote in her commentary.

Other relationship researchers disagree, however, saying that sociologists have cast shade on monogamy — finding declines in happiness, sexual satisfaction, and frequency of intercourse — for decades. “This is about as widespread a finding as one gets,” Harry Reis, a psychologist at the University of Rochester, told BuzzFeed News. He called the idea that social scientists are biased against studies showing the value of non-monogamous relationships was “poppycock.”

Sex researcher Debbie Herbernick of Indiana University echoed this view, saying funding is not an issue: “I’ve never seen much negative reaction or pushback.”

More critically, Reis said, reviewers might be dubious about the data collected on open relationships, given their relative rarity making reliable data collection difficult.

Although Lehmiller published his study, he agreed with Conley that a stigma still marks open relationships, even in science. “People, including many sex researchers,” he said, “have a tendency to put monogamy on a pedestal and to be very judgmental when it comes to consensual non-monogamy.”

Complete Article HERE!

2.5 Years Later, Zero Cases Of HIV In Large San Francisco PrEP Group

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A new study reveals that after 2.5 years, a group of more than 600 San Francisco men who have sex with men (MSM) taking Truvada as pre-exposure prophylaxis (PrEP) have had zero cases of HIV contraction.

The study also finds that many of these individuals are using condoms less and more than half of those in the group study had contracted at least one sexually transmitted infection (STI) within a year.

From POZ.com:

Researchers at Kaiser Permanente published their findings in Clinical Infectious Diseases. The paper represents a powerful endorsement of PrEP’s ability, in a real-world setting, to prevent HIV infection among those at very high risk of contracting the virus. The lack of new HIV infections among these men challenges the stance of AIDS Healthcare Foundation president Michael Weinstein, who has vigorously campaigned that PrEPshould not be used as a widescale public health intervention.

On the flip side, the Kaiser findings challenge the received wisdom from PrEP clinical trials that those taking Truvada as HIV prevention do not increase sexual risk-taking while on the medication.

“Our study is the first to extend the understanding of the use of PrEP in a real-world setting and suggests that the treatment may prevent new HIV infections even in a high-risk setting,” reports lead author Jonathan Volk, MD, MPH, a physician and epidemiologist at Kaiser Permanente San Francisco Medical Center. “Until now, evidence supporting the efficacy of PrEP to prevent HIV infection had come from clinical trials and a demonstration project.”

It’s important to reiterate that according to Kaiser, though no one using PrEP contracted HIV, there was a very high rate of other sexually transmitted infections (STIs).

POZ.com breaks it down:

After six months, the clinicians at Kaiser surveyed 143 of the cohort about their sexual risk-taking. At that time, 74 percent reported that their number of recent sexual partners had not changed since starting PrEP, while 15 percent said they had fewer sexual partners and 11 percent said they had more. Regarding condom use, 56 percent said they used them at the same rate after starting Truvada, 41 percent used them less and 3 percent used them more.

Because these individuals were not engaged in a clinical trial, there is no control group to measure the change in these men’s sexual risk-taking against. So there is no way to tell if the group would have changed their risk-taking in a similar pattern if they had not been taking PrEP.

One thing is clear, however: These men would have been at very high risk of contracting HIV had they not been taking PrEP while engaging in the same level of sexual risk-taking. The evidence is in their very high rate of STIs. Six months into taking PrEP, 30 percent of the PrEP users had been diagnosed with at least one STI. After a year, half of them had contracted one or more STIs, with 33 percent diagnosed with a rectal STI, 33 percent with chlamydia, 28 percent with gonorrhea, and 5.5 percent with syphilis. As noted, two of them contracted hep C.

“Without a control group, we don’t know if these STI rates were higher than what we would have seen without PrEP,” stressed the paper’s co-author Julia Marcus, PhD, MPH, postdoctoral fellow at the Kaiser Permanente Division of Research. “Ongoing screening and treatments for STIs, including hepatitis C, are an essential component of a PrEP treatment program.”

No one in the group has been diagnosed with HIV.

Our takeaway, PrEP is clearly doing its job in HIV prevention, however we need to remain vigilant in testing and treatment for STIs. The choice to use or not use condoms is up to the individual, but be aware of the risks and ensure that you’re regularly being tested to protect your health and potentially that of your sexual partners.
Complete Article HERE!

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