HIV effort let down by test shortages, says WHO

The Most Revd Ephraim S Fajutagana, Supreme Bishop of the Philippine Independent Church, undergoes an HIV test as part of the National Council of Churches in the Philippines public campaign to remove the stigma associated with HIV/Aids.

The Most Revd Ephraim S Fajutagana, Supreme Bishop of the Philippine Independent Church, undergoes an HIV test as part of the National Council of Churches in the Philippines public campaign to remove the stigma associated with HIV/Aids.

A shortage of HIV testing could undermine global efforts to diagnose and treat people with the infection, warn experts from the World Health Organization.  They looked at responses to annual surveys that the WHO had sent to 127 countries between 2012 and 2014 asking about capacity and usage of blood tests that check HIV status and health.

Story via BBC
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They found worrying gaps in provision. They warn that United Nation targets for HIV could be missed as a result.

The targets say that by 2020, 90% of all people living with HIV should know their HIV status, 90% of those diagnosed should receive antiretroviral therapy and 90% of these treated patients should have “durable viral suppression” (a measure of effective treatment).

Laboratory testing is vital to meet and monitor these aims.

But Vincent Habiyambere and his colleagues say in the journal PLoS Medicine that some low and middle-income countries, including African countries where the HIV burden is high, are not yet geared up for the challenge.

The surveys were sent to:

  • all 47 countries in the WHO African Region
  • 33 countries in the WHO Region of the Americas
  • all 21 countries in the WHO Eastern Mediterranean Region
  • eight high-burden HIV countries in the WHO European Region
  • all 11 countries in the WHO South-East Asia Region
  • seven high-burden HIV countries in the WHO Western Pacific Region

Over the three survey years, 55 (43%) countries responded to all three surveys, 35 (28%) to two surveys, 25 (20%) to one survey, and nine (7%) responded to none of the three surveys.

Testing provision did improve over the years, but shortfalls remained in some parts of the world.

Worrying gaps

Reasons for the gaps in provision included lack of reagents, equipment not being installed or maintained properly and inadequate or absent staff training. In some laboratories, machines were not serviced regularly. In others, machines broke down and were not covered by contracts to be serviced or fixed.

Dr Habiyambere and his team say: “A national laboratory strategic plan to strengthen services must be developed, implemented, and monitored by governments and their national and international partners.

“The focus of the international community, to ensure optimal use of laboratory technologies, should be on those countries where interventions for scaling up access to HIV diagnostic technologies are most needed.”

They acknowledge that they did not look at private sector testing and that some countries might rely more heavily on this than others.

In an accompanying editorial, HIV experts Peter Kilmarx and Raiva Simbi say the findings show some programmes may have been “overly focused” on buying equipment without planning for how it would be used and maintained.

In Zimbabwe, for example, only 5.6% of HIV patients on drug treatment in 2015 received regular blood checks to monitor their viral load – far fewer than the goal of 21%.  This was largely down to problems with resource mobilisation and specimen transport as well as equipment procurement, they say.

“Strong leadership, resources, planning, and management are needed to scale up laboratory services,” they conclude.

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No. PrEP isn’t just for gay men.

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“PrEP for a lot of women, will be their entry point for access to care,” noted Martha Cameron, Director of Prevention at The Women’s Collective. “They are hearing about it for the first time and you see the surprise,” she added. “The first part of the session is trying to convince people that it’s real, it’s out there, that it’s for women and not just for MSM, and it works.”

The Women’s Collective is a non-profit organization in Washington D.C. that serves women of color who are HIV positive or at risk for HIV. They’re working with the D.C. Department of Health on PrEP for Her, a new campaign that aims to increase knowledge about PrEP, or pre-exposure prophylaxis, among African-American Women. PrEP can be more than 90 percent effective in preventing HIV when taken daily.

Not everyone who is eligible for PrEP is aware of it, however, and that’s where the health department along with their community partners hope to make a dent. CDCestimates that there are 1.2 million people in the nation who are eligible for PrEP: 38 percent are women. “This group hasn’t really been targeted in any other initiative,” noted Ashlee Wimberly, PrEP for Women Project Coordinator at theWashington AIDS Partnership, a similar initiative to bring PrEP awareness to women. “There’s a very big gap.”

Ms. Wimberly is referring specifically to women of color. “The most important thing that needs to be mentioned is that there has hardly been any campaign, social media strategies, even images out there that have targeted women in general and especially women of color with regard to PrEP,” added Ms. Cameron.

17.2 percent of HIV diagnoses in 2014 in DC were among women; of all the women diagnosed, 91.2 percent were Black. Data from Gilead Sciences, the pharmaceutical company that makes Truvada® (the medication used for PrEP), showed an almost four fold increase in PrEP uptake between 2014 and 2015 among men, while the numbers of women taking PrEP remained stagnant.

PrEP for Her wants to change that. “It’s exciting to see it come together,” said Dr. Travis Gayles, Chief Medical Office at the D.C. Health Department. “I think for so long, especially around HIV, a lot of our resources haven’t been targeted towards women.” Dr. Gayles noted that while there are high numbers of men who have sex with men (MSM) impacted by HIV, and thus much of HIV prevention efforts focus on that population, it’s exciting to have an effort that includes women as well.

However, prescribing PrEP isn’t enough. “I’m a big believer that the easy part of PrEP is to write a prescription,” Dr. Gayles said. Ms. Cameron agrees. “The drug is not the issue,” she said. “The issue is you have to have follow-up medical care, and labs, and so on.” Ms. Cameron noted that many of the women she works with face barriers to sustained care, from financial instability, to housing security, being in violent relationships, and having mental health or substance use concerns. All those aspects must be addressed in order to reap the benefits from PrEP. Dr. Gayles concurs. “There are a lot of factors that go into adherence beyond just the patient’s desire to take the medication,” he said.

Ms. Wimberly added that the PrEp for Women Initiative aims to reach 5,000 women and 300 doctors in D.C. to increase knowledge and PrEP awareness through social media and traditional marketing over the next two years. The conversation is about empowering women and PrEP helps HIV negative women do that by putting prevention in their hands, in the form of a pill. Everyone agrees that messages about PrEP must be relevant for women and their sexual circumstances. “I think we definitely have to make sure that the information is accessible and we relay it in a way that connects with our intended audience,” Ms. Wimberly said. “If we’re going to be effective, that’s a key piece to it.”

The D.C. Health Department launched the PrEP for Her initiative this year with funding from the Centers for Disease Control and Prevention and the MAC AIDS Foundation. In July 2016, their STD clinic began offering PrEP to patients for the first time. The Washington AIDS Partnership launched the D.C. PrEP for Women initiative in July 2016. This fall, the Partnership will release a request for applications to support innovative projects aimed at increasing PrEP knowledge and utilization in Washington, D.C. Additionally, the D.C. Health Department provides funding to The Women’s Collective for some of their HIV prevention efforts.

Want to know more about PrEP.  This video demystifies the treatment.

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How to combat the threat of HIV drug resistance

 A mother holds her antiretroviral drugs, Triomune, at a HIV testing and treatment clinic in Lagos, Nigeria. Photograph: David Levene for the Guardian

A mother holds her antiretroviral drugs, Triomune, at a HIV testing and treatment clinic in Lagos, Nigeria. Photograph: David Levene for the Guardian

As we strive for an Aids-free generation, we must help people adhere to antiretroviral treatment to stop them developing resistance.

For people living with HIV, antiretroviral treatment (ART) has been a life-saver. ART stops HIV from making copies of itself and prevents HIV from attacking the body’s immune system.

At the end of 2015, 17 million people were taking ART around the world and Aids-related deaths had fallen by 45% since the peak in 2005.

Story via The Guardian
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But those who don’t stick to the ART regimen set out by their doctor or health worker might become resistant to the drugs. Resistance occurs when ART regimens are not taken as prescribed, which allows HIV to make copies of itself and increases the risk that the virus will mutate and produce drug-resistant HIV. A person who is on a drug such as Efavirenz can develop resistance after as little as a two-day interruption of treatment.

Globally, HIV drug resistance is on the rise. The World Health Organisation (WHO) reported that up to 2010, HIV drug resistance levels remained at 7% in developing countries. However, recently, some countries have reported levels at or above 10% among those starting ART, and up to 40% among people restarting ART.

At the beginning of the epidemic in sub-Saharan Africa, there was fear among the international community that people living with HIV in resource-limited settings would not be able to adhere to their treatment due to a lack of education and resources. Would they be able to keep time well enough to take their ART at the same time every day?

However, studies have demonstrated that people in sub-Saharan Africa may be better than people in the west at taking their ART as prescribed. The issue in developing countries is that people lack the resources to get to a clinic and pick up their pills. I’ve worked in Namibia since 2009, and whenever I visit ART clinics, there are long queues stretching out the door. People often have to wait all day and many can’t afford to take this time off work every month.

The stigma associated with being seen waiting in a queue to pick up medication is also a factor in people not adhering to their treatment plans. To avoid this, some people on ARTs travel to a clinic many kilometres away from their town, so they can receive treatment without anyone recognising them. And if you took a whole day off work, borrowed money for the transport and stood in a queue all day, only to learn that the clinic had run out of your pills, what would you do?

ARTs & HIV drug resistance

As the use of ART increases, so does the risk of HIV drug resistance. It’s no surprise, then, that global HIV drug resistance is on the rise, both among those already on ART and those just starting on it.

What could happen if levels of drug resistance reached critical levels? Their ART regimens would no longer be able to stop the HIV in their bodies from making copies of itself and they would then have to be switched to second-line regimens, if available.

But second-line regimens are more expensive. For countries already struggling to provide ART to those who need it, this would is likely to mean that fewer people could be started on ART.

Drug resistance has been a problem since the beginning of the HIV epidemic. In the west the problem was usually limited to individual patients. But in resource-limited settings, if a high percentage of the population develops drug resistance we could see large increases in Aids-related deaths and higher healthcare costs.

We must act now to help people adhere to their treatment plans, before it’s too late. Globally, there has been a huge focus on getting more people on treatment, but the quality of how it’s delivered has fallen by the wayside.

Drug resistance will rise when ART is not delivered in a well thought-out way. That requires strong drug supply systems with zero tolerance for an interruption of ART drug supply, strong and locally appropriate counselling to promote adherence, support for patients who don’t have the resources to access care, re-engagement of patients who have stopped going to the clinics, alternative ways to deliver care such as community-based ART groups, and strong medical record systems.

As we strive to end Aids as a public health threat by 2030, greater attention must be focused on identifying and correcting gaps in the quality of ART service delivery. Many lives depend on it and the time to act is now. If we don’t, we may find ourselves with a new global pandemic of drug-resistant HIV and be faced with a deadlier enemy than we started with.

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The NHS consultation for #PrEP is live now! Make sure your voice is heard.

Prep Infographic

The NHS have launched their 45 day public consultation on a proposed clinical consultation commissioning policy on Pre-Exposure Prophylaxis (PrEP) for HIV.

This consultation is necessary in order to make PrEP available to people who are at risk of becoming HIV positive.  Multiple studies around the world have shown PrEP to be highly effective in reducing the risk of contracting HIV. The results of the PrOUD trial in England, released in 2015, prove that PrEP works and that concerns about it not working in a real world setting, were unfounded. Read more about the trial here: http://www.proud.mrc.ac.uk/

PrEP has been approved by the World Health Organisation and it’s already available for those deemed at risk of HIV in the United States, Canada, France and Israel.  PrEP can reduce people’s chances of contracting HIV the virus if taken daily.

If you would like more information on both PrEP trials (PROUD and IPERGAY) visit Poz.com for a more detailed look (https://prodlb.poz.com/article/PrEP-CROI-26978-7841)

There are arguments for and against providing PrEP for free on the NHS.  That it could encourage risky sexual behaviour but it’s not always about risky behaviour. You, and you alone are responsible for your own sexual health.  If your sexual partner(s) dislike using condoms, you can stay protected by taking PrEP.  This is about taking ownership of your sexual health.  PrEP is another tool to sexual health which will reduce HIV nationally and help save the NHS vital money it needs for other services.

The following gives a breakdown and suggests the NHS could actually save money on HIV treatments if they were to adopt PrEP.

  • PrEP cost per year: (Media figure) £10m -£20m. Assume higher figure of £20m per year.
  • New HIV diagnoses in the UK per year: Approx 4000 people.
  • Cost over average lifespan estimated at £365,000 for treatment. (Assume average lifespan of 36 years for ease of calculation as some people are diagnosed in their teens, some in the mid 60’s) making an assumed cost of treatment per person per year at approximately £10,000.
  • New HIV diagnoses: Extra cost, year on year of £40m
  • Assume PrEP rolled out on 1st January 2017 and 50% is effective (i.e. that it reduces new HIV diagnoses in the UK by half. Likely to be more effective than this but let’s play out a worst case scenario).
  • In 2017, 2000 new cases of HIV are prevented saving £20m. This is a year on year saving.  PrEP however in an unchanging cost.  In 2018, 2000 new cases of HIV are prevented, saving £20m and the cost of treating the prevented 2017 cases in 2018 is also saved making a total of £40m saved this year.
  • It’s easy to see how this goes, although likely to be an upper limit to savings year on year after a few years, it won’t keep going up indefinitely.
  • PrEP does not merely pay for itself after one year but actively makes savings to the NHS budget in expensive HIV treatments, allowing other drugs to be funded.
  • This calculation assumes worst case figures here, the actual savings are likely to be higher.
  • In 2018 Gilead’s patent on Truvada (the PrEP treatment) may run out. If and when it does, further savings can be made.

Above breakdown via @THTorguk

We have been responding to the challenges of HIV for 30 years.  HIV will not go away unless we invest in, and try out proven methods to reduce the risk of HIV infection.  PrEP has been proven to work and we urge you, as someone who wants to see the end of HIV to respond to the consultation and get your voice heard.  If we work together, we could eradicate HIV in our lifetimes.

The NHS consultation is open until Tuesday 23 September.  Many people have felt powerless in the fight to make PrEP available on the NHS, and now you have the power to make it so.

Visit the follow link for further detailed information and to participate in the survey.

https://www.engage.england.nhs.uk/consultation/specialised-services

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Many of our youth have distressing sexual problems.

Sexual-Problems

At least one in 10 of UK 16 to 21 year-olds questioned in a survey admits to having a “distressing sexual problem” in the past year.  A lack of education around “issues of sexual satisfaction” is one of the causes, according to researchers.

They analysed data from 1,875 sexually active and 517 sexually inactive people aged 16 to 21.  Climaxing, erectile dysfunction and lack of interest in sex are some of the main issues.

The findings have been published in the Journal of Adolescent Health and the analysis is described as the “largest scientific study” of sexual health lifestyles in Britain.

It concluded that around one in 10 men and one in eight women aged 16 to 21 in Britain who are sexually active have experienced a “distressing” sexual problem lasting at least three months in the past year.

Among women, the most common problem reported was difficulty reaching a climax. Among men the most common were reaching a climax too quickly and difficulty getting and keeping an erection.

Researchers say that failing to address problems in early adulthood could potentially affect sexual happiness and relationships in the future.

Doctor Kirstin Mitchell from the University of Glasgow is the lead author of the report and says sexual difficulties can impact on young people’s sexual wellbeing in the longer term.

“When it comes to young people’s sexuality, professional concern is usually focused on preventing sexually transmitted infections and unplanned pregnancy,” she says.  “However, we should be considering sexual health much more broadly.”

The report found more than a third of people who reported one or more sexual problems had sought help about their sex life, but rarely from a professional. They asked for help from family and friends or searched for advice on the internet.

Study co-author Professor Kaye Wellings, from the London School of Hygiene and Tropical Medicine, wants sex education in schools to change.  “UK sex education is often silent on issues of sexual satisfaction, but these are clearly important to young people and should be addressed.

“Sex education could do much more to debunk myths about sex, discuss pleasure and promote gender equality in relationships.”

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Greg Louganis,two-time Olympic Gold Champion. On life and HIV.

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Greg Louganis cemented his place in U.S. Olympic history when he swept the diving events at the 1984 and 1988 Games. Now, nearly three decades later, Louganis is getting ready to head to Rio as an official athlete mentor for the U.S. diving team. But first he talked to Body Issue reporter Morty Ain about staying fit at 56, living with HIV and that infamous head injury in Seoul. Here’s Louganis, in his own words:

Explicit

dwayne-wade-espn-body-issueStory via ESPN The Magazine’s Body Issue 2016. 

 

 

 

ON THE ART OF DIVING
A performance in diving should be as emotional as any well-written play. It should be inspired. One of my first coaches, John Anders, said that his coach would say that “diving should be like poetry.” And that’s what he likened it to, as emotional as a beautifully written poem.

I did dance and acrobatics since I was a year and a half, performing onstage since I was 3. That’s communication without words — using your body in such a way to communicate an emotion, an idea, a thought. So that is kind of the same thing I felt with diving — that I could express myself, and my body would serve as my paintbrush.

As an athlete mentor with USA Diving, I tell the kids that the person who wins an Olympic gold medal isn’t the one who is the most perfect; it’s usually the one who makes the least number of visible mistakes. Rather than focus on perfection, I encourage them to focus on success. If you focus on how successful you can be at that moment in time, I think that is really key. Make those minor adjustments in order to be successful, not to focus on being perfect. So when I was on the board, what I would do is take a deep breath, let it all out. I knew the dive that I was going to be doing, but just allow my body to do what it is trained to do. Don’t overthink; just do.

ON BEING DIAGNOSED WITH HIV
At the time I was diagnosed [in 1988], we thought of HIV as a death sentence. It was six months prior to the Olympic Games, and I was like, “Well, I’m going to pack my bags and go home and lock myself in my house and wait to die.” Had they known about my HIV status at the ’88 Olympics in Seoul, I would have never been allowed into the country. But my doctor encouraged me that the healthiest thing for me would be to continue training for the Olympics. The diving was much more of a positive thing to focus on. I did suffer from depression; if we had a day off, I couldn’t get out of bed. I would just pull the covers over my head. But as long as I had something on the calendar, I showed up. Whether that was to work out, an interview or speaking or appearances, I’d show up. I’ve long suffered from chronic depression, so even when I was younger, I didn’t think I’d see 30.

ON HITTING HIS HEAD IN SEOUL
As I was taking off the board, I knew that I was going to be close. I knew that I stood it up a little straight, and usually when you do something like that, you’re worried about hitting your hand or, god forbid, your arm. When I was coming out of the dive, I made sure that my arms were wide so that I would not hit the board, but then I heard this big hollow thud and I go crashing into the water, and I was thinking, “What was that?” Then I realized, “Oh my god, that was my head.”

My first feeling was embarrassment. I was embarrassed. I was thinking, “How do I get out of this pool without anyone seeing me?” It’s the Olympic Games and I’m supposed to be a pretty good diver and good divers don’t do that [laughs]. But then I got angry with myself, to have allowed that to happen. And then after my coach got my head sewn up, he said, “Do you want to continue? I’ll support you 100 percent in whatever you decide.” I turned to him with kind of a knee-jerk reaction and said, “We’ve worked too long and hard to get here, and I don’t want to give up without a fight.” But when something like that happens, it just totally deflates any confidence that you have, and he did turn to me and say, “Look, I know you don’t believe in yourself right now, but believe in me because I believe in you.” And I was like, “OK.”

I knew that I had two more dives to get through prelims, and of course the next two dives were going in the same direction — in reverse. I was like, “OK, just treat it like nothing happened. The dive before did not happen.” It was funny because I got set on the board, they announced my name, they announced the dive, and I could hear an audible gasp from the audience. I was like, “Oh my god, they are afraid.” I took a deep breath and I patted my chest because I felt like my heart was pounding outside my chest. And when I took that breath, the people that saw that started chuckling. It was like, “Oh my god, he’s afraid too!” Then I started laughing and thought, “OK, whatever it’s going to be, it’s going to be,” and just went for it. So I did my reverse 1½ with 3½ twists and stood it up, but stood it up in the right place.

In regards to bleeding into the water, I was paralyzed by fear. I didn’t know what my responsibility was, and I didn’t have a whole lot of time to prepare for my next dive, if I was going to continue. It was a strange time. I remember when we finally finished and we had our team dinner at the end of Seoul, we were handed our Olympic rings and then we were supposed to share something with our family of divers. I got up there and I turned to my coach, Ron O’Brien, and I said, “Nobody will ever know what we’ve just been through.” Because I didn’t think anybody would, because I didn’t think that I would live long enough to see it.

ON BEING A GAY ATHLETE
I learned later that there were some team meetings. The dive team is a very small group, so when we were traveling internationally, I guess there were team meetings about who was going to room with me. I ended up rooming with maybe a coach, or maybe they would get me my own room. There was usually one person on the team that was secure enough in their sexuality that it didn’t matter, but no one really wanted to room with “the fag.” In retrospect, I don’t know how much of that was true homophobia, because I’ve been in touch with a lot of these guys since then and my sexual identity is not an issue to the vast majority of them. But at the time, I was winning. So I don’t know how much of it was true homophobia or how much of it was jealousy.

But there were signs; my teammate Kent Ferguson remembers it as BTF Club: “Beat the Fag Club.” It was right around the time that “Ghostbusters” came out; I remember we were staying in these dormitories and had shared bathrooms, so there would be “FAG” with the “not” sign like “Ghostbusters” and all this. “Who you gonna call? Fagbusters.” That was kind of what was going on at that particular competition; I think it was an Olympic festival. So I was very much aware of that.

Things are different now. I think we’ve come to a place of acknowledging bullying and recognizing the importance of standing up for your fellow teammate. I think there is less of that. There is much more sensitivity, and people are much more open. Just look at how many athletes have come out now. The one that I really admire is [Australian diver] Matthew Mitcham; he felt like he couldn’t compete on that high level only sharing a part of himself. And so that’s the reason that he came out, and then he won an Olympic gold medal [in 2008], which paves the way for [British diver] Tom Daley coming forward with his sexual identity. It just makes it easier. And then you have Jason Collins, Michael Sam, Robbie Rogers, Gus Kenworthy … there’s a number of them; all of these athletes who can be who they are authentically and not be afraid.

ON LIVING WITH HIV
I felt so isolated because of the secrets at that time. I was out to friends and family, and everybody in the diving world knew about my sexual identity, but very few people knew about my HIV status. I felt like I was living on an island.

In the early 2000s, I started to give up on the treatment. I didn’t feel like I was throwing in the towel so much as waiting to die. But I lacked faith in the treatment. This is when the protease inhibitors were just coming on and the awful side effects of that. A lot of people who were taking the medications were having a really difficult time being compliant with their drug regimen and were giving up. And I was one of those. I stopped taking my meds for over a year. My T cells dropped to, I think, 11; my viral load was in the millions. I felt fine, I felt OK, but my numbers were just ridiculously out of whack.

I sold my life insurance. My insurance policy actually showed up on the show “American Greed”! Which was fascinating. They reached out to me: “Well, this 92-year-old woman in Florida bought your life insurance policy.” Oh my god, I felt so bad. And when I did the interview, they produced a document that was notarized and signed by my previous doctor saying that I only had a maximum of six months to live. It was so devastating. That was a good reason why he’s not my doctor anymore [laughs].

It’s a smart virus. It mutates over time, and they have to change up your treatments to be effective against the virus. I’ve gone through so many of the various treatments through the years, and with a lot of those studies I was their guinea pig. I was doing a play in Chicago, and at the time I was on Norvir; one of the side effects was explosive diarrhea within 20 minutes of taking it, and then it just saps your energy for the next hour to two hours to recover. So what I did was basically I had my rehearsal schedule, and two to three hours prior to having to be onstage or in rehearsal, I would take my medication. So I’d time it in such a way that I could get through. That is kind of the mentality that I was brought up with, because I started as a dancer and, you know, “the show must go on.” It’s that kind of mentality that helped me navigate through the ins and outs of living; it was just a part of my life, I didn’t think of it as anything extraordinary. To me it was just logical.

What I’m on now, I take my meds in the morning, I take my meds in the evening and go about the business of living. I haven’t noticed any side effects per se, not like other treatments. I went a round of interleukin-2 when they were doing that, and that was incredibly debilitating. I couldn’t monitor my body temperature. It was like the worst flu that you could ever have. I went to my doctor and I told him, “There’s something to be said about quality of life, and this is interfering with my quality of life.” I made the decision to not continue with that treatment. It’s a real balance of learning what you can tolerate and what ultimately you can’t. You have to say enough is enough.

ON BEING FIT AT 56
When I look around at my contemporaries, I’d say I’m probably in better shape than most of them [laughs]. It’s all about making healthy choices. I think HIV has helped motivate me mentally and physically. I look at working out and doing something physically active every day as being as important as taking my meds. That’s just a part of my health and well-being. I notice that if I don’t work out, then my head starts spinning; I go to some pretty crazy places. So I do yoga, I do spin, I do circuit training. I’ve started introducing back some gymnastics and some tumbling to maintain strength and flexibility. It’s fun and it gives me an outlet.

My metabolism isn’t quite what it used to be. I struggle with that belly roll. What I’m trying to do is cut sugar out of my diet and eat clean and that sort of thing. I mentioned the belly roll to my husband and he’s like, “Please, you don’t have anything.” Nothing to complain about, but I see it, remembering when I was 23 and 7 percent body fat.

I try to live by example — being gay, being HIV-positive — you know, life goes on. HIV taught me that I’m a lot stronger than I ever believed I was. Also, not to take anything for granted. I didn’t think I would see 30, and here I am at 56. I never know what’s going to be around the corner. I don’t think of anything really as a failure; you’re just learning lessons, and I’ve learned a lot of lessons already [laughs].

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What It’s Like to Tell Your Boss That You’re HIV Positive

Office Workplace

In the modern British workplace, you can’t be fired or discriminated against in any way on the grounds that you’re HIV positive. That would be a criminal offence. Notifying your employer isn’t a legal requirement, but if you do chose to disclose your status and are met with anything other than support, confidentiality and reasonable adjustments, then your employer has almost certainly broken the law.

Story va VICE.
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Part of the Equalities Act 2010 was created to lessen its impact in employment and ensure disclosure wouldn’t jeopardise careers or future opportunities. Under the legislature, people with HIV cannot be treated less favourably under any circumstances. But thanks to the stigma and misunderstanding surrounding HIV, some have found it wholly ineffectual.

Had Shaun* stayed silent about his own diagnosis, he wouldn’t be fighting to save his career. “I have felt over the past two years that they were looking for ways to get me,” he says. For the last six years, Shaun has worked in the insurance department of a FTSE 100 British supermarket chain and has asked for anonymity as the situation is ongoing.

He received his diagnosis one Monday lunchtime in September of 2013. Disorientated, he returned to work the following morning, but by 9:30AM he found himself coerced into a meeting room while human resources tried to determine the cause of his visible distress. Despite his best efforts to resist disclosing his status – one he had barely begun to come to terms with – he was told he would be sent home if he refused to explain his discomfort.

“I felt forced. I wasn’t ready to say it myself, to anyone, never mind the HR person who I don’t really know,” he recalls. “I disclosed. She literally just went, ‘I’ll need to go and check whether I’ll need to tell all the first aiders.’ I was like, ‘I don’t even have to tell you, never mind anyone else.’ I got a message in the afternoon saying they had checked and they didn’t need to tell the first aiders.”

Shaun was under no legal obligation to disclose his status to anyone in his company. Six weeks later, they displayed an offensive level of ignorance around the subject.

“They took me into a room and told me they’d done some research and that if I cut myself at my desk, or in the building, to make sure that someone comes into the room and cleans it up,” says Shaun. “I believe my words were, ‘Well of course, if you were a negative person you would just lie in a pool of your own blood, wouldn’t you?’ That just angered me even more because where have they researched it? Where have they got that information from?”

The Equalities Act 2010 states employers are to make reasonable adjustments with regards to people living with HIV; the most common being time off for clinic appointments. Despite an attendance track record Shaun describes as “exemplary” (before his diagnosis he hadn’t taken sick leave since 2009), his employer began tracking his absences on a spreadsheet stored on the company server.

“My head of department wanted to know which appointments were not covered by the Equalities Act, with no details or explanation to me as to why they wanted that information,” explains Shaun. “I said, ‘You’re making me feel like you’re out to get me. And, allegedly, that’s not the case. I don’t believe them, but at the same time they said because I’m spending so many hours out of the business, they were trying to quantify how much work I had done.”

When he disclosed his status, Shaun was stunned by how little his employers knew about HIV – especially with regards to employment law. This was, after all, the well-resourced HR department of a FTSE 100 company; that they can brazenly display such ignorance – not to mention intolerance – and get away with it doesn’t bode well for people living with HIV who work in much smaller businesses.

Alice started working as a sales consultant at a London-based recruitment firm – a small company with five employees – four months after her diagnosis. Shortly after starting her medication she fell ill and decided to let her boss know, meeting up with him in a pub outside of office hours.

“It was just awful,” she says, recalling his reaction to her disclosure. “Straight away I could tell it was the wrong thing to do because his eyes widened and then he said, ‘When am I gonna get AIDS? When am I gonna be ill?’ He started to freak out and then said he needed to change the contract because if I fell over he was going to be sued. He said, ‘Why the hell didn’t you say? I think it’s so unfair that you didn’t say.’ I thought he would thank me for telling him and maybe be a bit shocked. I was speechless.”

The conversation lasted around 40 minutes, with topics ranging from the potential dangers of sharing cups and cutlery in the office (there aren’t any dangers), the jokes he had previously made about people with HIV in the office (which he then denied making), the fact he needed her parents’ number in case anything happened to her (he didn’t) and his anger that he wasn’t told sooner.

The discussion finished constructively with a promise that he’d put together a workable plan. She never made it back into the office. Instead, she received an email stating that she’d failed to pass her probation and wouldn’t be kept on. Compared to a previous conversation Alice had with him, it made for a sharp change of direction.

“He honestly was like, ‘You’re gonna make loads of money,'” says Alice, considering their relationship prior to his disclosure. “We were working really closely together, starting to do other projects.”

While Shaun and Alice have faced difficulty from their employers on account of their HIV status, Jayce Carberry, 26 from Medway, Kent, suffered from the prejudice of his clients. He received his diagnosis in 2012 and at the time was working as a freelance hairdresser. When the rumours about his diagnosis started to spread through his relatively small hometown, he chose to own the situation and address them with a Facebook status.

“I was doing really well and I was busy all of the time,” says Carberry. “I text to confirm appointments, and [after my Facebook status] I would get a text or a phone call back saying, ‘I read on Facebook about your HIV and I don’t really feel comfortable with you cutting my hair.’ I would say I lost a good 40 percent of my client base.”

The most common reason his clients abandoned him was their irrational fear of what would happen if he cut himself on his scissors and they came into contact with his blood (very little, is the answer). With a sharply diminished client list, he tried to return to a salon he previously worked at and invested in. He was told hiring him “would be a risk to the reputation of the salon”. He had previously left the salon on good terms and the owner was supposedly a friend.

“I gave up hairdressing. It was demoralising with all that going on,” he says. “I got really depressed about it and hid away from the world for a couple of months and lived off my savings for a while. And then I went to sign on. I had no other option.” Carberry has since moved to Brighton. As well as setting up a blog detailing his journey, he now manages a sexual health website for the METRO Charity.

There’s a definite sense that fighting, even if you’re on the right side of the law, is difficult, if not impossible. While Shaun may yet find himself in an employment tribunal, Alice chose to avoid a lengthy and expensive trial. As Jayce Carberry was self-employed, he has no case at all.

Legal fees, time constraints, lack of evidence, ignorance around employment rights – the reasons why HIV discrimination in the workplace often goes unpunished and underreported are numerous. But the stigma and misunderstanding of HIV is what enables the law to continually be undermined. Until companies – and the general public – gain better knowledge of what the virus is, these stories will sadly continue to repeat themselves.

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*Name changed to protect identity

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