TheBodyPro.com - The overlooked secondary benefits of PrEP

Pre-exposure prophylaxis (PrEP) against HIV infection utilizing tenofovir/emtricitabine (Truvada) has been nothing short of revolutionary in changing the landscape of HIV prevention. What has been less discussed are the enormous secondary benefits that have followed the introduction of PrEP.

These include:

1. Frank discussions about sex and risk.
2. Increased attention to screening, prevention and treatment of sexually transmitted infections (STIs).
3. New attention to fighting HIV stigma.
4. Discussions about pregnancy in mixed-status heterosexual couples.
5. Encouraging people, especially young people, to seek primary care.

So first, because it's the one that makes most people, especially providers, nervous: Let's talk about sex.

'We Don't Have to Wait for Other People to Treat Us Better': Taking the Sting Out of Stigma in Prison

By: JD Davids

From: The Sero Project and published on thebody.com

Living with HIV in prison, Lisa Brelsford feels isolated. "It can go to the extreme of they don't want to be your roommate, sit next to you, be close to you, talk to you," she says. "They don't want accidental spit to get on them or in the air."

But Brelsford is not really alone: she's targeted by stigma. Stigma is prejudice -- people make assumptions or judge you. Imprisonment can bring stigma. So can being a person of color; poor or lowincome; lesbian, gay, bisexual or transgender (LGBT); a drug user; or a sex worker; or living with mental illness. And due to prejudice, people from these groups are more likely to be sentenced to prison.

So when Lisa Brelsford's counselor told her, incorrectly, that her spit could give someone HIV, it wasn't the first time she'd heard this myth. She was already serving time in Connecticut for an assault count she says was up-charged due to the irrational fear of her saliva. Lack of knowledge is one thing, but spreading misinformation when the facts are available is prejudice. Hearing that again -- this time from her counselor -- gave her a whole-body reaction: "I thought the top of my head was going to explode," she says. "My heart was racing. I thought I was in the Twilight Zone."

Brelsford offered the counselor a copy of an HIV magazine. "I knew better, and I was going to prove it," she says. Many people with HIV behind bars say how helpful it's been to distribute information and bring in HIV educators -- especially people living with HIV (PLHIV) who speak from firsthand experience -- and expert groups like the Red Cross to teach the facts. Laurel Sprague, a woman with HIV who coordinates the U.S. People Living with HIV Stigma Index, has found that educating health care providers about how stigma affects PLHIV changed the providers' behavior. But one person's efforts are often not enough to educate those in power. Education takes repetition over time and is more effective when it comes from several sources. When Brelsford challenged her counselor's inaccurate, stigmatizing statement, the counselor simply walked away. "Other women came up to me, some hugged me and others talked to me," she remembers. Kindness and solidarity can help people find the strength to fight for the truth another day.

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First Evidence of Long-Acting PrEP that May Work for Women

February 23, 2016, by Emily Newman

BETA is reporting from the 2016 Conference on Retroviruses and Opportunistic Infections (CROI) this week in Boston—bringing you the latest news, updates, and research on HIV treatment and prevention.

A microbicide vaginal ring shows modest success in protecting women from HIV, but issues with adherence still remain.

Developing HIV prevention options for women at risk of HIV is an ongoing challenge for the HIV research community. Products controlled by women—such as microbicide gels that need to be applied daily or before and/or after sex—have failed to demonstrate efficacy in large clinical trials when women did not, or could not, use the products in the way they were designed. But now, there’s a glimmer of hope for a new type of HIV prevention product for women: a silicone vaginal ring that delivers a drug called dapivirine.

Annalene Nel, MD, PhD

“I’m thrilled to share that the dapivirine ring might be a new HIV prevention option for women,” said Annalene Nel, MD, PhD, of International Partnership for Microbicides, at a CROI press conference.

Nel, along with Jared Baeten, MD, PhD, of the University of Washington, presented groundbreaking results from two separate Phase 3 clinical trials (designed in collaboration) demonstrating the success of a long-acting dapivirine vaginal ring in reducing HIV risk among African women. Dapivirine is an investigational non-nucleoside reverse transcriptase inhibitor antiretroviral drug. The ring used in the two studies provided long-acting protection from HIV but needed to be replaced every 30 days.

The ASPIRE study, with 2,629 women in four African countries, showed an HIV risk reduction of 27% with the dapivirine ring compared to placebo. After researchers excluded two study sites with lower retention and adherence, the ring was responsible for reducing HIV risk by 37%. There were 168 HIV infections during the course of the study: 97 in the placebo group (4.5% incidence rate per 100 person-years) and 71 in the dapivirine group (3.3% incidence rate per 100 person-years).

The Ring Study, with 1,959 women in South Africa and Uganda, showed that the dapivirine ring reduced risk of HIV infection by 31%. Seventy-seven women (out of 1,300) using the dapivirine ring and 56 (out of 650) using placebo acquired HIV.

Jared Baeten, MD, PhD

“This is the first demonstration of a sustained release approach for antiretroviral prevention,” said Baeten at the CROI press conference.

Adherence was an issue

As with previous PrEP studies involving women, the results are tempered by adherence issues, which the researchers indicated may have been responsible for the modest (though significant) overall reduction in HIV risk seen.

Researchers were able to assess adherence by measuring the levels of dapivirine taken from blood samples and by measuring the amount of residual dapivirine still remaining on the vaginal rings once they’d been used.

In both studies, adherence increased over time—which Baeten and colleagues suggest could be due to the fact that women needed time “to be comfortable with the ring.” Women who were adherent and used the ring more consistently were more likely to have decreased risk of HIV infection.

Since participants self-inserted the vaginal rings during study visits, and returned with them still in place, Nel suggested during the press conference that some participants may have actually taken the rings out between visits then put them back in place before returning to the clinic. “The reason why many of the women at high risk participate in the trials—we should not underestimate. Women participate in trials for the standard of care as well as the monetary incentive.”

Younger women had less protection from HIV

Younger women were less likely to be adherent, and were thus less protected from HIV. In the ASPIRE study, the dapivirine ring did not show any evidence of protecting women between the ages of 18 and 21. However, the efficacy of HIV protection for women over 21 was 56%.

Nel reported similar findings in The Ring Study: no significant protection for women ages 18 to 21, but higher efficacy (37%) for women over age 21.

“HIV protection in the study was, not surprisingly, greater with greater adherence,” explained Baeten.

“The data from both studies suggest that the ring must be used consistently to achieve protection and that protection can be achieved with consistent use,” said Nel.

Baeten and colleagues also suggested that physiological considerations may have an effect. “The genital tract of women in this age group may be more susceptible to HIV-1 infection and potentially also more difficult to protect with antiretroviral prophylaxis strategies.”

Looking forward

Nel reported that the study sponsor, International Partnership for Microbicides, will pursue an open-label continuation of The Ring Study, and plans to seek regulatory approval for the investigational product.

During the press conference, Baeten raised the possibility that—if used in real-world settings—the ring might show greater risk reduction that that seen in these two studies.

“These clinical trials are tremendous endeavors. But they are different than what real-world counseling is like. Women in the studies are counseled, appropriately, that, ‘we don’t know if this works. We don’t know if this is safe.’ Perhaps it’s not surprising that we see lower adherence and lower HIV protection in these two studies. I think the real-world situation might be quite different, when someone is choosing to use the ring that is known to be safe and effective.”

Sources:

Baeten, J. M. Use of a vaginal ring containing dapivirine for HIV-1 prevention in women.The New England Journal of Medicine. February 22, 2016.

Baeten, J.M. Abstract 109LB. A Phase III Trial of the Dapivirine Vaginal Ring for HIV-1 Prevention in Women.

Nel, A. Abstract 110LB. Safety and Efficacy of Dapivirine Vaginal Ring for HIV-1 Prevention in African Women.

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Unsure/Positive Trailer -- 2016

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HIV-positive Protagonists (Part One & Two)

Part 2:

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Updated Treatment Guidelines: Stronger Support for Starting Early

February 19, 2013, by Reilly O'Neal

The newly updated Guidelines for the Use of Antiretroviral Agents in HIV-1-Infected Adults and Adolescents, released February 12, 2013, by the Department of Health and Human Services, recommends offering treatment to people with “early infection,” defined as infection that occurred within the past six months. This includes the initial acute infection stage, when the virus is rapidly reproducing in the body but may not yet be discovered by routine HIV antibody tests.

The recommendation for starting antiretroviral therapy in people with early infection was strengthened from “should be considered optional” to “should be offered.”

See “Early Treatment Cuts Infection of Resting CD4 Cells” to learn more about acute infection—and why researchers hope starting HIV therapy early may help eradicate the virus.

The updated guidelines continue to advise treatment for all HIV-positive individuals, regardless of CD4 cell count (a key measure of immune function), both to preserve and improve the HIV-positive individuals’ health and to protect their sex partners. “Clinicians should also inform patients that viral suppression from effective ART [antiretroviral therapy] can reduce the risk of sexual transmission to others,” the guidelines state.

That said, the update acknowledges “patient readiness” as a crucial factor in the decision to begin life-long antiretroviral therapy. “Patients starting ART should be willing and able to commit to treatment and understand the benefits and risks of therapy and the importance of adherence,” the guidelines emphasize. “Patients may choose to postpone therapy, and providers, on a case-by-case basis, may elect to defer therapy on the basis of clinical and/or psychosocial factors.”

Thinking about starting HIV treatment? See “Resource Round-Up: Starting Meds for the First Time” to get tips and tools for finding the right regimen and making it work for you.

Additional changes address testing for drug-resistance mutations, screening for HIV “tropism” (essential before starting a regimen that includes the CCR5-antagonist drug maraviroc [Selzentry]), and new information about drug interactions, as well as special considerations for pregnant women and for people beginning HIV treatment for the first time.

A summary of the changes is available here. To read the updated guidelines yourself and learn about the studies and reports that informed these changes, click here.

Reilly O’Neal is a freelance writer and former editor of BETA.

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Using saliva as lube can cause rectal gonorrhea

April 4, 2016, by Emily Newman

“Nearly half” of all rectal gonorrhea cases may be eliminated if men did not use their partners’ saliva as a lubricant during anal sex, reports a study published recently in Sexually Transmitted Infections. However, the authors note, “It is likely that the public health message from our findings is complicated and involves more than simply recommending that saliva is not used as a lubricant for anal sex.”

The study, which tested participants for gonorrhea and also questioned them about anal sex practices other than penile-anal intercourse, found that receptive partners who used their partners’ saliva as a lubricant were more than 2 times more likely to have rectal gonorrhea—even after adjusting for factors such as condom use, HIV status and gonorrhea infection of the throat.

Other studies have found that using saliva as a lubricant during anal sex is common practice among men who have sex with men, and gonorrhea bacteria can be detected in the saliva of people with pharyngeal (throat) infections.  The current study is the first to provide evidence that saliva from a person with a pharyngeal gonorrhea infection may substantially increase risk for rectal infections when that partner’s saliva is used as a lubricant during anal sex.

“This article makes a decent argument for looking into lube saliva as a method of GC [gonorrhea] transmission,” said Pierre-Cédric Crouch, PhD, ANP, the nursing director at Strut. “The study does have many limitations that the author do list out—most notably, it is a very small study and it is all self-report. I wouldn’t change my messaging about GC transmission based on this study, but I think it’s compelling enough for other public health researchers to look more into it.”

Read more on BETA about gonorrhea, how it’s transmitted, and how it’s possible to get rectal gonorrhea even if you’re a top.

The study was conducted at a sexual health clinic in Victoria, Australia, and included 1,312 men. The researchers tested participants for pharyngeal and rectal gonorrhea infections and assessed three different types of anal sex practices including receptive rimming, receptive fingering or penis dipping, and use of a partner’s saliva as a lubricant during sex.

A total of 56 participants (4.3%) tested positive for rectal gonorrhea and 22 (1.7% of those tested) tested positive for pharyngeal gonorrhea. The majority of men reported receptive rimming (70%), receptive fingering or penis dipping (84%) and use of a partner’s saliva as a lube during anal sex (69%) in the preceding three months.

Using a partner’s saliva as a lube for anal sex was associated with a 40% increased risk for rectal gonorrhea even after adjusting for age, condom use during receptive anal intercourse, pharyngeal gonorrhea infection and HIV status. Rimming and receptive fingering/penis dipping was not associated with rectal gonorrhea. The authors speculate that the larger volume of saliva present when used as a lube, compared to the amount present when rimming, may explain this difference.

The authors note that because the study was only conducted at one sexual health clinic, their findings may not be generalizable to men who have sex with men in other communities.

The findings, the authors conclude, “highlight how important the pharynx is in the overall transmission [of gonorrhea] and how important further studies of exploring more complex sexual behaviors and their role in rectal gonorrhea are.”

Larger studies are needed, they say, to verify the association between specific sexual practices involving saliva and rectal gonorrhea.

Source:

Chow, E. P. F. and others. Saliva use as a lubricant for anal sex is a risk factor for rectal gonorrhea among men who have sex with men, a new public health message: A cross-sectional survey. Sexually Transmitted Infections, March 2016.

Gonorrhea is a sexually transmitted infection caused by a bacterium that can live in the mouth and throat, in the rectum and in the reproductive tract. It can be transmitted by touching body parts that are infected. Many times, people don’t realize they have gonorrhea because they don’t have any symptoms. Strut, the health and wellness center of San Francisco AIDS Foundation, offers free gonorrhea testing for gay, bi and trans men. Get additional information at www.strutsf.org.

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Online privacy concerns limit the reach of sexual health messages on social media

Roger Pebody
Published: 25 April 2016
Aidsmap.com

The way in which individuals manage their identities on Facebook, for example avoiding publication of material which could be seen as revealing something about their sexual behaviour or HIV status, limits the potential of online campaigns like It Starts With Me to reach wide and new audiences, according to a study published online ahead of print in Sexual Health. Those people most exposed to such campaigns are likely to be people who already believe in the social norms that the campaign promotes, the researchers say.

“Nearly all of our participants held concerns about privacy relating to their social media use and their engagement with sexual health interventions,” the researchers say. The researchers did not ask direct questions about privacy but it emerged spontaneously as an important theme in interviews.

The data come from a qualitative evaluation of HIV Prevention England’s health promotion programme It Starts With Me. The programme, which began in 2013 and is ongoing, targets gay men and African people living in England with messages promoting HIV testing and increased condom use. As well as advertising and face-to-face outreach, the programme includes social media interventions.

Users are encouraged to share, ‘like’ and comment on Facebook posts. These actions are important for increasing the number of people who see posts and for building a network of individuals engaged with the campaign.

Indeed, data on this kind of engagement are often cited by HIV Prevention England to demonstrate the campaign’s reach. Currently the two It Starts With Me Facebook pages are ‘liked’ by almost 34,000 people. In a three-month period last year there were around 250,000 engagements (clicks, likes, shares) with paid-for content produced by the campaign across a range of digital platforms. In the last twelve months, there have been around 75,000 engagements with posts on the campaign’s Facebook pages.

Although those figures are impressive, they don’t tell us more about who is engaging with the material and how they do so.

Sensitive material

In late 2014, 40 people were interviewed. The first 20 were recruited through the online social networks of gay and African voluntary sector organisations; these interviews focused on how interviewees generally engaged with health information on social media. The next 20 respondents were recruited via the Facebook and Twitter accounts associated with It Starts With Me; these interviews also covered the respondents’ engagement with the campaign.

Of the 40 participants, 29 were men who have sex with men and 13 were African. Two men identified with both groups. The majority of the African participants were female.

The interviews showed that the It Starts With Me campaign “was effective in speaking to deeply held norms surrounding responsibility, HIV and sexual health,” especially among gay men. This man felt it was important for him to engage with HIV issues and he frequently shared campaign posts:

“I’ve got people who I went to school with who will make a flippant statement about someone having AIDS or someone doing this and I’m just like, I kind of think it’s my duty to educate and make people more aware.”

However, this kind of behaviour would be problematic for many interviewees. Individuals interacted with a wide variety of people on social media (friends with different interests and from different parts of their lives, family, work colleagues, etc.) and it could be difficult to manage the varied expectations of these different ‘audiences’.

Interviewees felt that some information might be appropriate to share with some people they knew, but not everyone. They worried about how engagement with sexual health content on social media would be perceived by others.

This concern was most acute for those who were not open about their sexual orientation. This African man was afraid of homophobic reactions:

“There’s still a lot of stigma around issues regarding HIV and also a lot of people know about people being gay. If I start liking things, gay and HIV, there’ll be a lot of questions being raised.”

Another man feared what his social media activity might reveal about his HIV status. On Facebook he had ‘liked’ two HIV charities but did not want to go further:

“I’ve liked those. But I don’t like too many of the organisations, because I don’t want too many people to know that I’ve got it. Obviously it’s not something that I go around telling people at all.”

One man said that after he shared a petition about access to pre-exposure prophylaxis (PrEP), contacts had asked him if he had HIV. Several interviewees indicated that material about testing and prevention for HIV-negative people had this potential.

In order to manage these issues, some respondents only shared posts in a targeted manner to people who they assumed would find the material useful. This allowed them to maintain divides between different spheres of their lives. This bisexual man said that he was not ‘out’ to all his Facebook friends:

“[Say] this report is about the Facebook campaign, it’s about HIV, and I know a few people who have got HIV. And instead of putting it out to the fourteen hundred, I would just put it on these people, on their walls.”

An African woman was generally interested in medical advances and felt able to share information about the medical aspects of HIV. However, taboos about the open discussion of sexuality in African communities limited her comfort in sharing information on sexual issues.

Respondents often found the privacy controls on Facebook confusing and were not confident that they could control who saw what. There was also some concern about the technical competence of health organisations to manage privacy concerns.

“Someone posted something to [an organisation’s] Facebook wall as a question of something. [The organisation] answered it, but they also shared it as a public post. That person flipped out, because they weren’t necessarily out to everyone.”

Conclusions

The data suggest that engaging with sexual health content is threatening to the way in which many people in the target audiences establish and maintain their online identities.

“These [privacy and safety] concerns limited the organic reach of the intervention by confining the intervention to those who already held the norms diffused through it, and by discouraging participants from sharing and commenting on content,” the researchers say. In particular, this created a barrier to engaging members of minority, marginalised or otherwise ‘hard-to-reach’ communities with sensitive topics.

The researchers suggest that ‘gated’ or ‘closed’ social media groups might allow more engagement of people with concerns about privacy, by providing a boundaried and moderated space. They may be more conducive to people engaging in deeper, more supportive conversations.

Reference

Witzel TC et al.?It Starts With Me: Privacy concerns and stigma in the evaluation of a Facebook health promotion intervention. Sexual Health, online ahead of print, 2016.

Model suggests there are fewer people with HIV in the US than thought, and more of them on therapy

Gus Cairns
Published: 20 April 2016

A study comparing recorded diagnoses of HIV with subsequent records of viral load and CD4 tests suggests that the number of people with HIV in the US could have been overestimated by as much as 45% – and the proportion who are on antiretroviral therapy (ART) with undetectable viral loads could have been underestimated by as much as 50%. There could be a few as 820,000 people with HIV in the US compared with the normally accepted figure of 1.2 million – and up to 55% of those could be on ART and virally suppressed, compared with the most commonly quoted figure of 30%.

Background

The 30% figure comes from a 2011 study (reported here on aidsmap.com). However, it is not just because it is five years out of date that the 30% figure has been questioned. It is also puzzling because with such a low rate of viral suppression, one would have expected a continuing increase in the number of new diagnoses – but this does not seem to be the case, with decreases in diagnoses reported for nearly every group in the last few years. In contrast, in the UK, with roughly two-thirds of people with HIV on ART and virally suppressed – more than twice the supposed US figure – the number of new infections, at least in gay men, continues to slowly increase.

The 30% viral suppression figure in the US has been blamed on a healthcare system that excludes a lot of people from care, and a recent model based on the usually accepted figures has calculated that as many as 45% of people diagnosed with HIV are not in current medical care and that 60% of new infections come from these people.

Figures from individual US cities with high HIV prevalence, however, suggest much higher rates of care and viral suppression. Studies from Seattle and New York presented three years ago at the Conference on Retroviruses and Opportunistic Infections (CROI) suggested that 57% and 44% of people with HIV in those cities, respectively, had an undetectable viral load even then; and a more recent study from San Francisco suggested a figure of 60% there – close to the UK figure and one which, with the addition of a sizeable number of HIV-negative people taking pre-exposure prophylaxis (PrEP), seems to be leading to considerable falls in new HIV infections.

The Seattle researchers found that, in their city at least, 20% of people with HIV reported not to be in care actually were in care – partly because they had moved to another area and were getting care there, but also because the way of calculating who was in care was to count the number of people who had had at least one CD4 count or viral load test during a specific four-month period.

This measure is the same as the one used to make the original countrywide estimate of the proportion of people in care. This comes from the Centers for Disease Control and Prevention’s (CDC) Medical Monitoring Project (MMP), which receives data from a selection of states and cities. The period used in the original 2011 estimate was January to April in that year. However, this may considerably underestimate the number of people actually in care if their CD4 or viral load tests are not reported or if they happen not to attend during that period.

Conversely, deriving the number of people with HIV from positive test results may overestimate the number of people with HIV if they are duplicated for some reason – for instance, under single and married surnames – or if, as is not uncommon, people who say they did not know they had HIV have, in fact, already been tested. A UK survey found that 27% of people reported (from anonymised blood samples) as having HIV but not being tested for it during a sexual health screen were, in fact, already taking ART – they just preferred not to tell their sexual health clinic. Deaths may also be under-recorded, especially if people move abroad, thus overestimating the number of people still alive.

This study

Suspecting that some of these conditions might bias the US statistics, the researchers in this study first directly compared the number of new HIV diagnoses reported in New York City both with the number of reported CD4 or viral load tests in a four-month period, and also the number of people for whom at least two HIV care appointments at least three months apart were recorded in one year.

They found that by HIV test data, 97,128 people were recorded as being diagnosed in New York City and still living there up to the end of 2012. However, by using laboratory test records, they only found 77,334 people diagnosed with HIV living in New York at the same date. This implies that test data could be overestimating the number of people with HIV in New York by 25.6% – or, alternatively, that 25.6% of people diagnosed with HIV in New York are not attending care.

Conversely, the figure for the number of people with at least two recorded medical visits (more than three months apart) in 2012 was 61,159 – implying that using recorded medical appointments as the definition of ‘being in care’ would underestimate the number actually in care by 21%.

Taken together, these two figures could underestimate the proportion of people diagnosed who are in care in New York by as much as 37%.

The researchers were able to do a similar exercise for 19 other jurisdictions in the US ranging from populous and high-prevalence areas (such as the state of Illinois) to rural and low-prevalence areas (such as North Dakota). However, while they had diagnosis and laboratory test reports for these 19 areas (which were chosen because they had the most complete data), they did not have appointment attendance figures.

They therefore provided two estimates: in one, the under-reporting of ‘being in care’ was assumed to be the same as in New York; in the other, they assumed that both lab test results and appointment records were under-reported by 15% each. This would increase the number actually in care, and would mean the difference between this figure and the number diagnosed with HIV from HIV test records would be lower.

They found that if CD4 and viral load results and appointments were recorded as reliably in New York, then the number of people diagnosed with HIV derived from HIV test results would in all cases overestimate the true figure – and in some cases, by a huge margin. For instance, it would mean that the number of people actually diagnosed with HIV living in West Virginia, Minnesota, Hawaii and Washington DC was actually less than half of that derived from HIV test results – and in Illinois, less than one third.

Or – and this is the alternative reading – that in these five areas, an unusually high proportion of people with HIV is not currently in care.

If CD4 and viral load results and appointments were regarded as being recorded 15% less reliably than in New York City, then in some states – Delaware, Iowa, Nebraska, North Dakota and South Carolina – the number of people diagnosed with HIV derived from HIV tests and from CD4 and viral load tests would match. In short, nearly everyone diagnosed with HIV in those states would actually be in care.

In Washington DC and Illinois, however, the true number of people diagnosed with HIV would still be overestimated by 100% if CD4 and viral load test results were a better guide to true HIV diagnosis figures than HIV test results, and by 50% in West Virginia, Minnesota and Hawaii.

Impact on the HIV care cascade

If viral load and CD4 count results are a better guide to the number of diagnosed people living with HIV, then this would have a huge impact on the so-called HIV care continuum or cascade.  

The CDC estimates that there are 1.2 million people living with HIV in the US of whom just over a million (86%) are diagnosed. However, it estimates that only 46.5% of the diagnosed, or 40% of the total, are retained in care, and this means only 30% of the total have a suppressed viral load.

If the researchers’ assumptions are correct, then the true total of people living with HIV in the US is only 819,000 – a third lower than the CDC estimate. But the proportion retained in care would be 84% of the diagnosed and 72% of the total. This in turn would imply that 55% of all people with HIV in the US are on ART and have a suppressed viral load – not that much lower than the UK figure.

In making this new cascade, the researchers used a method of estimating the proportion of people out of care by noting that patients return to care at a fairly constant rate and that this can be used to estimate the number out of care. They used the case of Seattle – a city with excellent records – to estimate the proportion of diagnosed people with HIV who are retained in care. This is 84%, which may seem high, but actually includes people who have not had a CD4 or viral load test result for over four years. When these are removed, the proportion rises to 88% and in New York using the same method, to 91%.

The 55% viral suppression rate may be higher than this in some cities if the same methods are used to weed out ‘false’ records of people living with HIV. It would be 67% in Seattle (about the same as the UK), 70-72% in New York, and as much as 78% in San Francisco, which could explain most of its fall in HIV diagnoses.

Conclusions

The truth is likely to lie somewhere in between, as some areas may have a high proportion of diagnosed people out of care while in others there may be a lot of people recorded as living with HIV who are not actually in that area, alive, or even actual people. In particular, the true number of people living with HIV in the US is likely to lie somewhere between the CDC’s 1.2 million and this study’s 819,000.

The researchers say that their study, “is not an attempt to precisely quantify the number of HIV-infected persons in the US but rather to examine the extent to which the current estimates change when derived from evidence available at the state and local level.” They note that as the CDC received more accurate figures, they revised their own estimate down from 1.178 million in 2008 to 1.145 million in 2010. However, they suggest that this figure is still an overestimate due to duplicate records and undercounting of deaths, and that CD4 and viral load test and appointment records should be used to make more accurate local estimates.

Reference

Xia Q et al. Persons living with HIV in the United States: fewer than we thought. J Acquir Immune Defic Syndr, early online publication. doi: 10.1097/QAI.0000000000001008. See abstract here. March 2016.

People with HIV feel pressure to take ARTs whether they are ready or not.

Australian people living with HIV who have chosen not to take antiretrovirals and who have doubts about HIV medicine report feeling excluded and silenced within HIV organisations and communities, according to a qualitative study published online ahead of print by Medical Anthropology Quarterly.

In general, the interviewees did not deny the benefits of antiretrovirals, but did not yet feel ready to make a commitment to start a lifelong regimen of medication. They were aware that good adherence is vital but may be challenging, and also of the potential of all prescribed medications to do harm as well as good. Given these concerns and hesitations, pressure to take treatment for the benefit of the wider community did not sit easily with the interviewees.

Asha Persson and colleagues from the University of New South Wales designed a study which aimed to understand the views and experiences of people not using HIV treatment at a time of growing policy emphasis on treatment uptake. They conducted in-depth, qualitative interviews with 27 people living with HIV who were not taking HIV treatment at the time of their interviews (conducted between 2012 and 2014). While ten interviewees had never taken HIV treatment, the others had previously done so for a short period of time or for a specific purpose, such as pregnancy. The sample included 19 gay men, four heterosexual women, three heterosexual men and one bisexual man.

Persson examines the interviewees’ stories in the context of the anthropological concept of ‘pharmaceutical citizenship’. According to this concept, pharmaceutical medications are seen as having the promise of allowing individuals to fully participate in society, in other words to be more active citizens. People who may have been marginalised by poor mental health, physical incapacity, infectious disease or a stigmatised health condition can be re-integrated.

To give an example of pharmaceutical citizenship related to HIV, a previous study showed how an awareness of the impact of HIV treatment on prevention was helpful for couples in which one person has HIV and the other does not. Anxieties about the risk of HIV transmission were receding, allowing the couples to experience their relationships as ‘normal’ and safe.

But with antiretroviral treatment for all people with diagnosed HIV increasingly becoming the norm, it may seem that accessing medical care is not only a right, but also a social obligation. The authors ask:

“What are the implications for citizenship and people’s sense of inclusion if they decide not to take HIV treatment? … What kind of subjects and citizenship take shape when people with treatable diseases such as HIV refuse, desist, or delay taking recommended medication?”

Antiretrovirals making HIV feel more real

Generally, the interviewees were well-informed about recent developments in HIV medicine and could not be portrayed as being ‘anti-medicine’ or as ‘denialists’. Most were engaged with medical care and maintained constructive relationships with their doctors, some of whom agreed with their patients that starting HIV treatment was not necessarily an overriding priority at that point in time.

Many respondents were reluctant to start treatment for as long as they felt healthy and normal. They feared that they would not feel the same way if they began treatment. As a 46 year old woman who had been diagnosed for 15 years explained:

“If my results are trending down, I’m going to have to take meds and I will take the meds and I’ll be a hundred percent compliant. I know that they’re there to save our lives and they’ll prolong our lives. I’m just keeping that up my sleeve. I don’t think I need to be on them… I want to do everything I possibly can to delay that for as long as possible.”

Interviewees talked about the symbolic significance of starting treatment. For a recently diagnosed gay man in his fifties, it would

“mark a different phase of my life living with HIV… the reality of HIV kicking in.”

One woman said that one psychological benefit of not being on treatment was that she could disengage from HIV.

“Because I’m not on medications, I kind of forget I’ve got it... Look, admittedly, it probably will be something that reminds me daily of what I’ve got. So, at the moment, I can sort of sail along life quite easily and not sort of think about those sorts of things because I’m not on medications.”

Rather than seeing treatment as helping him keep HIV under control, this man felt that needing to start treatment would signify a loss of control, with the virus now having the upper hand.

“Not taking treatment... every year that’s passing by, I guess, it’s another year of keeping my head above water... I still have my natural immune system fighting and surviving, and that’s what is important for me.”

The authors note that while medications are usually understood as helping people feel healthy and well, in these accounts the drugs would make the illness feel more real. Treatment could reinforce respondents’ sense of being different and having an unwanted health problem, rather than being seen as something that could make them feel ‘normal’.

Marginalisation and silence

Almost all interviewees were aware of the evidence that HIV treatment reduces the infectiousness of people living with HIV and of the increasing policy emphasis on increasing the uptake of HIV treatment for this reason.

Indeed, participants described pressure from people around them to ‘do the right thing’ for the sake of the wider community, a call that brought about ambivalence and resentment. One man said that the treatment as prevention agenda stigmatised people living with HIV as a “threat to public health” in need of pharmaceutical control. As another said:

“I think that within that message is an implied message, from my perspective as someone who is positive, that I’m potentially irresponsible.”

Many interviewees had stories of being questioned or reproached by friends or family members. A 42 year-old man who had never taken treatment but had been diagnosed for 18 years and could be described as a long term non-progressor said:

“I found that I come up against a little bit of resistance and hostility when I’m talking to people, when people discover that I’m not on medication and I haven’t been for a very long period of time. Other people, you get a real variation of reactions, and I’ve had people tell me that, "You have no idea. You don’t know anything about this virus because you haven’t experienced it. You haven’t been what we’ve been through. You don’t know what you’re talking about."… It's all a bit unsettling because nobody deserves anything like that, but also people shouldn’t be made to feel guilty because they’re well.”

Time and again, interviewees said that they did not know anyone else who had HIV and was not taking treatment. They felt marginalised and silenced within groups of people living with HIV and by HIV support organisations.

“I don’t have any friends who are positive but not on treatment. I wouldn’t know where to find them, mainly probably because they do isolate just like me… There doesn’t seem to be any real sort of support for people who don’t take medication because when you mention it to people… they’re incredibly pro-medication and they’ll put you down.”

“I don’t openly tell anybody else that I don’t take the medication… I was feeling like a marginalised person within a marginalised group.”

The authors note that while the medications promise to reduce some of the stigma associated with HIV, individuals who do not take them find themselves marginalised in a new way, by the increasingly normative expectations and ‘responsibilities’ around HIV treatment.

Maintaining a dialogue

In a related article, Christy Newman, one of the co-authors of the study, comments that with the increasing focus on the benefits of HIV treatment, there are fewer opportunities for people with HIV to express their fears or concerns.

“This opens up important questions about how government and advocacy organizations can keep conversations about treatment use open and supportive, recognizing that consumers have rights to both access these lifesaving and preventive medicines and to hold doubts about them,” she says. “We need to ensure that the growing focus on treatment uptake avoids contributing to practices or perceptions of coercion, which risk forcing those with even minor doubts into stronger positions of treatment refusal and mistrust in the healthcare system.”

References

Persson A et al. On the Margins of Pharmaceutical Citizenship: Not Taking HIV Medication in the “Treatment Revolution” Era. Medical Anthropology Quarterly, 2016.

Newman CE. Appreciating doubts about HIV medicine. Journal of the International AIDS Society 18:20717, 2015. (Full text freely available online).

POZ.com: HIV Spreads Through the Body Much Faster Than Previously Thought

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Disclosure: taken from poz.com

Here are some general disclosure tips:

• Be selective. Choosing whom to tell or not tell is your personal decision. It's your choice and your right.
• Consider the five "W's" when thinking about disclosure: who, what, when, where and why. Who do you need to tell? What do you want to tell them about your HIV infection, and what are you expecting from the person you are disclosing your HIV status to? When should you tell them? Where is the best place to have this conversation? Why are you telling them?
• Easy does it. In most situations, you can take your time to consider who to tell and how to tell them.
• Consider whether there is a real purpose for you to tell this person or if you are simply feeling anxious and want to "dump" your feelings.
• Telling people indiscriminately may affect your life in ways you haven't considered.
• Having feelings of uncertainty about disclosure is a very common reaction.
• You have a virus. You don't have anything to apologize for simply because you are HIV positive.
• Keep it simple. You don't have to tell the story of your life.
• Avoid isolating yourself. If you are unable to tell close friends, family members or other loved ones about your HIV status, allow yourself to draw upon the support and experience of others in the HIV community. Consider joining a support group or an online forum such as the POZ Forums.
• There's no perfect roadmap for how to disclose. Trust your instinct, not your fears.
• Even if the response you receive in a specific situation, doesn't go the way you'd hoped, you're going to survive it and your life will go on.
• Millions of others have dealt with this experience and have found their way through it. You will get through it too.

Disclosure to Spouses, Partners and Significant Others
Studies have shown that most HIV-positive people disclose their HIV diagnosis to their significant other—their spouse or partner—within a few days of learning their status. One approach to disclosure that some HIV-positive people follow is to only tell people who come in direct contact with your bodily fluids such as blood, semen or vaginal secretions.

The issue of disclosing your status to your partner or significant other can be complex. If you've had unprotected sex with your partner, it's important to alert him or her to the fact that he or she may be at risk and should get tested. Regardless of your partner's decision to test and his or her results, by disclosing, you're making him or her aware of the need to practice safer sex together in the future.

You might also want to tell your partner in an effort to get the emotional support you need. It's important to have someone to listen to your concerns, to offer suggestions, and to just simply be there. While some people fear becoming a burden when they have health problems, sharing your experiences can often be an opportunity for building a deeper intimacy and a stronger partnership.

It's perfectly normal to experience anxiety about telling a partner. Before he or she can respond to your needs, your partner may first feel anxiety about his or her own HIV status (which can only be addressed through HIV testing) and may also feel angry and upset if the HIV infection occurred sexually, outside of the relationship. Disclosing your HIV status can add strain on the relationship so it’s important for you to give some thought as to when and how to disclose. Depending on the nature of your relationship, you might want to consider some professional couples counseling.

It's important for you to be aware of what the laws are in your state with regard to contact tracing and partner notification. Contact tracing refers to the efforts of government agencies to identify any and all persons who might be at risk of contracting HIV from an infected person. Partner notification refers to information conveyed to spouses, sexual partners, needle sharers and others who might be at risk for HIV infection. The laws regarding this vary from state to state. In many states, partner notification can be done anonymously through the state's Department of Health. The Department of Health in your state is a good source of information about what the legal procedure is in your state and how it might apply to you.

General contact tracing and partner notification issues to consider:

• In general, physicians may breach patient confidentiality in this situation and notify a sexual or needle-sharing partner of an individual's HIV infection who is at identifiable risk of infection, as long as they act in good faith and offer only the information necessary to help the notified person protect against future risk of infection or seek medical treatment.
• These guidelines do not require that a physician disclose the name of the person who might be putting an individual at risk, although in some instances that identity will be obvious.
• These guidelines do not justify disclosures about HIV information to insurers, employers, schools or other institutions.
• Efforts at contact tracing need not breach medical confidentiality with regard to the HIV-positive person. They need only advise people that they may have been exposed to HIV.

Dating and Disclosure 
Deciding if and when to disclose one’s status to a potential date or sexual partner can be handled in different ways. Some people prefer to get the issue out into the open immediately and disclose their status right away, sometimes even before a first date. Other people prefer to wait and see if the relationship develops before disclosing their status.

While in most cases, sharing your HIV status is a personal choice, in some states, there are specific laws relating to disclosure, which actually make it a crime not to disclose your status to a sexual partner. Most of these laws were passed in the early years of the epidemic and reflected ignorance and fear about HIV.

If you have concerns about your state's laws as they apply to your HIV disclosure, you might want to research the subject through your state's Department of Health or get in touch with your local AIDS service. The Sero Project has developed a map identifying states that have HIV-specific criminal statutes.

The real benefit of disclosing to a date or to a casual or anonymous sex partner may be a personal one. It takes strength of character to be honest in such a circumstance. At the same time, telling someone you are HIV positive at the beginning of a possible relationship or before having sex puts you in a vulnerable position. It's never easy to predict if you'll receive a positive or negative response.

Despite the fact that most people know about safer sex and how the virus is transmitted, fear and stigma are still a reality in relation to HIV, and disclosure can stir up very strong emotions. Your status may deter some people from proceeding further in a relationship with you.

General dating and sexual partner disclosure issues to consider:

• Keep what you say as simple and as direct as possible.
• Give yourself credit if you have been practicing safer sex with the sexual partner you're disclosing your status to. You are already behaving responsibly with that person.
• If the person you're disclosing to reacts negatively, remember that's only one person. Not everyone is going to react the same way.
• Remember that you should give the person you're disclosing your status to some time to process the information. Whatever their reaction may be at first, whether negative or positive, be aware that reactions can change in time.

Disclosing to Family and Friends
Family
If you have a good relationship with your family, disclosing to them may lead to an even stronger relationship. Your family is likely to be concerned about your future. You may find yourself educating them about HIV, as well as giving them emotional support. As they come to see that you're getting on with your life, and that your life is still good, their anxieties are likely to ease. Your family can be a good source of support depending on the nature of your relationship with them.

Realistically, you also have to consider that if your relationship with your family has been less than ideal in the past, this news may further strain relations, at least for a while.

HIV-positive parents face different and difficult decisions concerning disclosure to their children. These include important considerations of the prognosis of parental health and the matter of custody planning for underage children. Understanding the implications of HIV/AIDS may be beyond younger children. Decisions must be made about what and when to disclose.

Friends
Studies show that most people disclose their HIV diagnosis to close friends within days of learning the news themselves. Some people are more informed about HIV than others. A close friend may be able to offer new ways of thinking about your situation. A friend's greatest contribution may be simply listening to you.

While most friends will respect that what you have revealed was told in confidence, you need to be aware that your HIV status may end up becoming the subject of gossip among your other friends and acquaintances. In this situation, as in other difficult times in life, some friendships will endure and even deepen while others will fade away. If you have a tight-knit family or social group, or you live in a small community or a rural area, confidentiality may be harder to maintain. You might consider discussing with a counselor or some trusted person outside of your regular life about how to proceed.

General tips to consider when disclosing to family and friends:

• Keep what you say as simple and as direct as possible.
• Tell them you have something important to tell them.
• Offer to answer any questions they may have.
• Let them know they don't have to worry about your health.
• If you have particular HIV-related issues or concerns that you're trying to sort out, let them know.
• Request that what you're going to discuss be kept in confidence.
• Ask them to be there for you.
• Tell them how much they mean to you and how much you love them.
• Don't be afraid to show your feelings and to express how important this issue is for you.

Disclosure in the Workplace
Co-Workers
Sometimes strong friendships develop with co-workers. In such situations, it's natural to want to tell a co-worker friend with whom you feel particularly close about your HIV status. There may also be times when you're feeling particularly upset or stressed about something related to your status and have the impulse to disclose what's on your mind.

Even with a co-worker who's a good friend, give careful consideration to disclosing your positive status. There's a balance to be maintained between the natural exchanges which occur in a friendship and protecting your need for privacy. Be aware that even what you've said in confidence may still end up becoming the subject of gossip in the workplace. When that happens, gossip can move up and down in the chain of command in the workplace, with unforeseen results that may have serious consequences. Once you have disclosed your status, it's very hard—if not impossible—to take the information back. Your co-worker friend may very well live up to your best expectations. But you have to be prepared to deal with potential disappointments as well.

General tips to consider with regard to the workplace:

• Tell the person you have something important to tell them.
• Stress that what you're going to discuss be kept in the strictest confidence.
• Keep what you say as simple and as direct as possible.
• Tell them why you want them to know.
• Let them know you are sorting out issues related to your HIV status and their support is important to you.

Employers
If you're applying for a job, be aware that under the Americans with Disabilities Act (ADA), prospective employers do not have the right to make inquiries about your health or the existence of a disability prior to a conditional job offer. However, they may legally inquire if you are aware of any physical limitation that would interfere with your ability to perform the essential functions of the job.

In a situation where an HIV-related illness is interfering with your work to the extent that it might place your employment in jeopardy, arranging to sit down privately with your boss and revealing your situation may be the way to go. You might even consider bringing a letter from your doctor explaining the current state of your condition, and how it might affect your ability to perform your job. Because the ADA regards a person with HIV or AIDS as a disabled person, your employer is required to reasonably accommodate your needs if you are otherwise qualified to perform the essential duties of your job. Even if you are in a situation in which your health requires invoking the "reasonable accommodation" clause, sometimes all that's needed is a letter from your doctor. It can make nothing more than a general statement that you suffer from a "chronic condition," without specifically necessitating the disclosure of your HIV status.

It's important for you to keep in mind that individual state laws generally do not require anyone in your workplace to maintain your confidentiality if you disclose your status. The ADA helps to protect the confidentiality of an employee's medical information, but it does not specifically address protecting the confidentiality of orally and voluntarily disclosed medical information.

Many companies have guidelines to deal with potentially complicated legal matters such as dealing with disabilities and its procedures for determining "reasonable accommodations." It's your right to have this information, and you do not need to disclose anything about yourself when requesting this information. Knowing your company's policies will help you to determine whether or not you need to disclose your HIV status.

Hopefully you will not need to turn to legal recourse to protect your rights. However, if that happens there are laws to protect you.

General tips to consider with regard to employers:

• Unless your HIV status affects your current ability to perform your job, you are under no legal obligation to disclose your status to your employer.
• Consider very carefully what your purpose is for disclosing your status to your employer.
• If you do disclose, tell the person you want to speak with that you have something important to discuss with them.
• Stress that you're requesting that what you're going to discuss be kept in strict confidence.
• Be mindful that a request for confidentially is not an absolute guarantee that it will be respected.
• Some employers will rise to the occasion and be supportive. Others may be disappointing in their responses, and you will understandably feel hurt and angry.
• Keep what you say as simple and as direct as possible.
• Tell them you are receiving appropriate health care.
• Mention if you may need a particular accommodation such as occasional time off for a medical appointment.
• Tell your boss that you will make every effort to insure that your work is properly covered and that you're committed to doing your job reliably and well.
• Medical-related employer decisions about HIV (or any other disability) must be based on facts about you, not simply an employer's opinions about HIV.

Disclosure to Medical and Other Healthcare Providers
Your primary care physician needs to know about your HIV status. But in the course of your life, you will likely have occasions to visit different doctors and other healthcare professionals, sometimes for health matters that are not related to HIV. With other healthcare providers you have more of a choice whether or not to disclose. For instance, there's no particular reason your podiatrist needs to know you are HIV positive. But in the case of your optometrist or your dentist, while you're not legally bound to disclose, by having that information he or she may be able to identify certain health problems.

All medical providers are supposed to be take "universal precautions," which means special procedures to protect themselves against any transmissible infection, not just HIV.
Healthcare providers cannot deny their services to someone simply because the person is HIV-positive. If a doctor or other healthcare provider is uncomfortable treating someone with HIV and makes that known in whatever way to you, be aware that you have legal recourse in such situations.

As far as disclosure of your HIV-related information is concerned, bear in mind that it's generally permitted only after you have signed an approved special HIV release form.

General tips to consider with regard to medical and healthcare providers:

• All healthcare providers are bound by confidentiality laws.
• By telling a doctor, a nurse or other healthcare providers, you do give up a degree of privacy, but that does not release them from adhering to laws regarding confidentiality.
• Your status should be treated as privileged information. If, for instance, a doctor's employee discusses details with you that another patient might overhear, politely request that such conversations be discussed in private.
• A hospital or other healthcare provider may share HIV information with a patient's insurance company if the information is necessary to pay for medical care.
• If you're in doubt about whether you have to reveal your status for either medical or insurance purposes, or indeed legally for any other reason, call your local Department of Health or AIDS service organization. In some instances you may learn that it's necessary to disclose in order to have access to medical resources and services.

Last Revised: February 14, 2016

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