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Articles tagged with: June 2012

Jun28

The Stupid Question: “Are You Clean?”

Thursday, 28 June 2012 Written by // Mark S. King - My Fabulous Disease Categories // Dating, Gay Men, Health, Sexual Health, Lifestyle, Opinion Pieces, Population Specific , Mark S. King

Mark S. King on the dumbest question of all. Insulting too.

The Stupid Question: “Are You Clean?”

I took a shower this morning. I am clean. I might work out at the gym later, or maybe the trash bag will break on the way outside and I will scoop up coffee grounds and put them back into the bag. I will then be dirty. I will shower again. And I will be clean. 

Anyone who questions whether or not HIV stigma is on the rise need look no further than online profiles and hookup sites, in which “Are you clean?” is asked with infuriating regularity. Or perhaps you have suffered the indignity of someone asking you “The Stupid Question” while negotiating a tryst. The sheer ignorance boggles the mind.

Implying that I am somehow “dirty” because I am HIV positive may not be the intention of the person asking the question. Perhaps they are sincerely trying to assess the level of risk they might be taking. But it also implies that they may raise their level of risk-taking should you answer “Yes, I am clean.” To place one’s trust in this answer, and to base your sexual behavior on it, is precisely how people become infected with HIV.

The person being asked may not have tested recently. Or has been infected since the last test. Or is lying because they’re afraid, or ashamed, or nervous, or don’t feel safe being honest because of ramifications about which you have no idea. So it’s ultimately a fairly useless exercise.

Thus, the ignorance and danger of The Stupid Question. And, because it is asked fairly exclusively by people who believe themselves to be HIV negative, it sets up an “Us vs. Them” mentality. Positive vs. Negative. Clean vs. Dirty.

“They don’t mean any harm,” you may be thinking. Well, words have meaning, my friend. The ignorance evident in The Stupid Question makes it no less offensive. While the intent may be harmless, is does do harm to people with HIV by increasing stigma and driving a further wedge between HIV positive and negative people. Like it or not, it is an assessment of the sexual viability of someone, and by extension, their “worthiness” as a human being.

In my more hedonistic days — which admittedly were not exactly long ago in a galaxy far, far away — I was dumbstruck by the conversations I would have in gay public sex venues, even the most anonymous ones. “Are you clean?” would come the question by the gentleman who was fully prepared to engage in unsafe sex should my answer please him. “Really?” I would answer, “I mean, are you serious? You’re going to take the word of someone in a dark room that you couldn’t pick out of a lineup?” I would then explain, spoken at times through a three-inch hole in the wall, that if this question was his sole criteria, then he really needed to leave this place and go directly to an HIV and STD testing center. Post haste.

Can we please remove this insulting, dangerous and unproductive question from our lexicon?

There is an alternative to The Stupid Question. You can simply offer your HIV status and see if your partner does the same. If he does not or you don’t like the answer, it is your right to decline having sex. It is not your right to berate them for their response. Whatever the case, if you are trying to remain negative then sex with someone you don’t know well should only include low-risk activities. If the relationship progresses, you can offer to get tested together and be present for the test results of one another. And that is the alternative to The Stupid Question.

An interesting social marketing campaign has been created by a new organization known as The Stigma Project, which aims to reduce stigma by calling out questions like “Are You Clean?” I appreciate its mission “…to lower the HIV infection rate by defeating the stigma that strengthens it.” If nothing else, it has instigated a dialogue by addressing some of the misconceptions and clumsy thinking that stigmatizes people with HIV.

The environment we have created with questions like this one has implications beyond mere social awkwardness. It has bled into our criminal justice system. Laws now on the books are being used against people with HIV who don’t disclose their status to sex partners – even when they engaged in safe sex, used a condom, and no transmission occurred. The prosecutions are being conducted in a world in which disclosing your status – admitting you are “not clean” – has become increasingly difficult to do because of the very stigma generated by things like The Stupid Question.

To learn more about how criminalization has become a Kafkaesque nightmare for many people, check out some new addictions to the video library for the new organization The SERO Project, the brainchild of activist Sean Strub that is directly addressing HIV criminalization.

If you really want to be heard and make a contribution to this dialogue, I strongly urge you to take a few minutes and answer The SERO Project’s new survey that gauges your attitudes about when and whether people should disclose their HIV status. Even (and perhaps especially) if your views run counter to mine, your input is most welcome and extremely valuable.

Finally, National HIV Testing Day is next week on June 27th. If you’re reading this after that day, please replace it with any date in the next month. Because the funny thing about HIV-negative test results is that they have a very short shelf life.

Last year I produced a short video, “In Praise of HIV Negative Gay Men,” because as an HIV positive man I feel more of a license to say things freely, such as what an accomplishment it is for a sexually active gay man to remain negative. And it was meant with all sincerity (as with all my videos, be my guest to re-post). Alas, it’s awfully tough to heap praise toward one side of the “viral divide” without offending the other, and the video was received with decidedly mixed reviews. Some people thought my delivery was deliberately sarcastic. Or demeaning to those who were positive.

While I admit my theatrical presentation could possibly be misconstrued, I do find it interesting how people project their own attitudes onto what they view, particularly when it comes to HIV status. People are touchy. You know, like when they get asked The Stupid Question. At any rate, check out the video, clear your mind, remember I’m actually a totally sweet guy, and see how the message strikes you.

“Are You Clean?” meanwhile, isn’t a message with value in any context. As a matter of fact, it’s downright filthy.

Mark

This entry first appeared in Mark S. King’s regular blog My Fabulous Disease.  (Artwork credit: The Stigma Project)

Jun27

Treatment Benefits For All?

Wednesday, 27 June 2012 Written by // CATIE - HIV and Hep C Info Resource Categories // As Prevention , CATIE, Health, Treatment, Living with HIV, CATIE - HIV and Hep C Info Resource

CATIE’s James Wilton explores the use of HIV treatment to reduce the risk of HIV transmission. Do the personal and public health benefits coincide or clash?

Treatment Benefits For All?

This article by James Wilton first appeared in The Positive Side, a publication of CATIE.

Une version française est disponible ici.  

The journal Science named it the breakthrough of 2011 and Time magazine ranked it among its Top 10 medical breakthroughs of the year, so you may have heard of the term “treatment as prevention” by now. If not, we can fill you in. It has at its core the idea that HIV treatment can reduce the risk of HIV transmission, and it is set to mark a historic shift in how we think about the HIV epidemic.

When effective antiretroviral treatment became available in 1996, forward-thinking researchers began speculating that the drastic drops in viral load that occur when people with HIV take treatment might reduce the risk of passing the virus to others. But there was no evidence to back up the idea. In the past few years, as more and more studies confirm this theory, the distinction between treatment and prevention has become increasingly blurred. Last year the strongest evidence supporting the use of treatment as prevention was announced: A study known as HPTN 052 demonstrated that starting antiretroviral treatment earlier could dramatically reduce the risk of HIV transmission among serodiscordant heterosexual couples (in which one partner is HIV positive and the other is HIV negative)—by 96 percent. Some researchers now say that treatment IS prevention, and we are hearing bold claims that the end of the ­epidemic is within sight.

In real-life terms, treatment as prevention involves getting more people with HIV diagnosed and on treatment. While ending the epidemic is a laudable goal, what does this mean for individual people with HIV—the people who face every day the reality of living with the virus and being on HIV treatment? There are concerns that these public health efforts may come at the cost of the rights of HIV-­positive people. At the same time, treatment as prevention could improve access to the services needed for people with HIV to live healthy lives.

Two perspectives

We can think of treatment as prevention in two ways: as a prevention strategy for individuals and as a public health strategy. Both have implications for people living with HIV and each raises its own set of issues.

A prevention strategy for individuals – An HIV-positive individual may want to use treatment to reduce his or her risk of passing HIV to others. Research shows that people living with HIV who are on treatment and have an undetectable viral load are, on average, less likely to pass HIV to others. However, there are several caveats and gaps in the research, which make it difficult to know exactly how well this strategy would work for each individual. (For more on viral loads and the biology of HIV transmission, check out “Sex, Drugs and Viral Load” in the Winter 2008 issue of The Positive Side.) 

A public health strategy – Since we know that treatment can reduce the risk of an individual transmitting HIV to his or her partner, it follows that increasing the number of people on treatment in a community prevents a large number of transmissions. The overall goal of treatment as ­prevention from a public health perspective is to increase the number of HIV-positive people with an undetectable viral load in a population and thereby decrease the number of new infections. 

Seek, test, treat 

A major challenge to the success of such a public health strategy is the large number of people who are HIV positive but don’t know it. In Canada, about one quarter of people living with HIV are unaware of their status. If people don’t know they are HIV positive, then they can’t consider starting treatment and are unlikely to have an undetectable viral load. 

To tackle this issue, health officials have developed a “seek, test and treat” strategy, whose goal is to seek out undiagnosed individuals, test them for HIV, and treat those who test positive and are ready to start antiretroviral therapy. 

Increasing the number of people who get tested is good for both the health of people with HIV and for HIV prevention. For people living with HIV, it can mean getting diagnosed sooner and getting the treatment and support they need. (Many people in Canada aren’t learning about their status until they are in the late stages of HIV infection and this often means worse health outcomes.) For HIV prevention, more testing can mean diagnosing more people at an earlier stage of infection. People can then take steps to prevent passing the virus. 

Reactions on the ground have been mixed: Treatment as prevention has been hailed as a “game-changer” but some worry about the potential for coercion and that services may focus exclusively on testing and treatment. 

Ken Monteith, the executive director of COCQ-SIDA in Montreal who was diagnosed with advanced HIV in 1997, has concerns that a treatment as prevention strategy could potentially pressure or mislead people into getting tested and starting treatment for the sake of broader public health goals. “When I hear ‘seek, test and treat,’ it sounds aggressive to me. We need to make sure that a person consents to being tested and to starting treatment,” he says. ”People must have the right to say no. We need to make sure that measures are in place for people to have their decisions respected and to make those decisions based on complete information about the advantages and disadvantages of being tested and starting treatment.”

The Canadian HIV/AIDS Legal Network’s executive director, Richard Elliot, is worried about the shift to routine testing and about “opt-out” testing (where a healthcare provider tests unless the client or patient refuses). “The healthcare provider should always ask if you would like to be tested and testing should only be done if the person accepts that offer, rather than just presuming that someone consents to an HIV test unless they specifically say they don’t want one. This is an ethical obligation and a human right.” 

Elliott also stresses that informed consent requires that people be aware of the possible ­negative consequences of testing positive for HIV. For example, he notes that people with HIV can be criminally prosecuted for not disclosing their HIV status to sexual partners and that there is a possibility for health information, including a person’s HIV status, to be shared. He says that these “are things people need to understand in order to make an informed decision.” 

Even when testing is “opt-in,” the issue of informed consent isn’t always straightforward. For example, the four major acute-care hospitals in ­Vancouver now offer an HIV test to each and every person who is admitted. As ­Marcie Summers, executive director of the Positive Women’s Network in BC, points out, “If you’ve been admitted with a case of acute appendicitis, are writhing around in pain, and someone offers you an HIV test, how informed will your ­consent be?” 

Starting treatment earlier 

To further the aims of the public health approach to treatment as prevention—increasing the number of people on treatment—another strategy is to have people with HIV start treatment earlier than current treatment standards. 

Many guidelines in developed countries currently recommend starting treatment when a person’s CD4 count drops below 500. However, in light of the recent evidence that starting treatment earlier may improve the health of people living with HIV and lower the risk of transmission, the U.S. Department of Health and Human Services, which produces the granddaddy of HIV treatment guidelines, recently changed its guidelines to recommend starting treatment in all HIV-positive people who are ready to start. In the UK, guidelines released earlier this year do not recommend ­earlier treatment but advise clinicians to discuss with everyone who tests positive the potential for treatment to reduce HIV transmission. Quebec’s HIV treatment guidelines acknowledge that treatment could be considered for lowering the risk of HIV transmission, and updates to the guidelines, currently underway, are expected to address in greater depth the concept of treatment as prevention. 

This movement toward recommending treatment earlier has been met with some criticism. “The worry is that treatment is being suggested earlier than is generally indicated for the benefit of the patient,” says Monteith. “Putting someone on treatment for the benefit of the public, and not primarily for the benefit of the person living with HIV, is ethically questionable.” 

Murray Jose, executive director of the Toronto People With AIDS Foundation and living with HIV for 21 years, is also concerned. “These changes represent a fundamental shift toward a public health ap­proach to treatment instead of focusing on the well-being of the person living with HIV,” he says. “The evidence isn’t conclusive that the health of a person with HIV is going to be improved by starting treatment earlier. In fact, it’s possible that the opposite is true because these drugs can be toxic and we don’t know a lot about their long-term side effects, particularly for the newer medications.” 

Despite these concerns, Jose recognizes that giving people the option to start treatment earlier to reduce their risk of transmitting HIV to their sex partner(s) is important. “People living with HIV should absolutely be given all the options. But I worry that newly diagnosed individuals may feel unduly pressured to start treatment in order to reduce their risk of passing HIV to others.” 

Holistic care 

AIDS service organizations from coast to coast to coast have long known the value of providing holistic care to people with HIV. Testing and treatment are crucial pieces of the puzzle but not the whole story. Many people with HIV look for different kinds of support when they are first diagnosed and also when they decide to start treatment. A holistic approach can help people stay connected to their care team, stick to their pill-taking schedules, provide emotional support and ensure that more people achieve an undetectable viral load. 

Jose believes that engagement in care needs to improve in Canada. “There is just no excuse for the poor access to prevention and treatment services that exists in Canada, particularly among Aboriginal populations, prisoners and newcomers to Canada,” he says. ”If we can use this new evidence on treatment as prevention to push for improved access to services, then that’s great, but the focus and motivation needs to be the health and well-being of the person living with HIV, not just prevention.” 

Dr. Julio Montaner, director of the BC Centre for Excellence in HIV/AIDS and a lead proponent of treatment as prevention, has been a driving force behind a pilot project in BC called STOP HIV/AIDS. The project, focused on Vancouver and Prince George, aims to cut HIV transmissions by expanding HIV testing, treatment and support services. 

Marcie Summers has had the opportunity to learn about STOP HIV/AIDS and to see treatment as prevention in action. “One of the main goals of the project is not just to increase HIV testing but also to engage people living with HIV in care. Quite a few of the initiatives that are part of the STOP HIV/AIDS project are improving engagement in care quite effectively, particularly for people who have fallen through the cracks of our healthcare system. This includes people who have tested positive and haven’t accessed healthcare or people who were on meds and went off them for some reason. There was initially a lot of skepticism about STOP, and there still is, but there are some really good initiatives going on.” 

STOP HIV/AIDS is a concrete example of the momentum that is building toward a shift in HIV policies and programs. Promising research on treatment as prevention has led to strong arguments for better integrating treatment and prevention services, but the rights of people living with HIV need to be at the centre of this new approach. 

The Legal Network’s Richard Elliott thinks this is possible: “Public health goals and human rights are largely complementary. Achieving the highest attainable state of health for the individual and for all individuals are human rights goals. In the big picture, if you go about pursuing public health goals without protecting and respecting the human rights of individuals, then people’s trust in the health system will erode and achieving HIV prevention goals is going to be more difficult. Scaling up treatment should be done both because it’s good for individuals who need treatment and because we know that treatment is a way to protect public health more generally.” 

Illustrations by Kelly Schykulski 

Read more about the HPTN 052 study in CATIE’s TreatmentUpdate 185.

Jun27

More Bad News about Smoking

Wednesday, 27 June 2012 Written by // Bob Leahy - Editor Categories // Activism, OHTN OHTN/PositiveLite.com, Health, Smoking Cessation , Living with HIV, Opinion Pieces, Bob Leahy

OHTN Cohort Study data adds to our knowledge of what smoking does to the health and quality of life of people living with HIV who smoke – and the news is not good. Bob Leahy points to what has to happen next.

More Bad News about Smoking

It’s something we’ve been told for years – the best way to improve health and wellness outcomes is stopping smoking, a habit currently shared  by about 58% of people living with HIV according to (2007)  Ontario HIV Treatment Network (OHTN)  Ontario Cohort Study (OCS) data.  If there is good news here, it’s that this prevalence rate is down from over 70% in 2001. But HIVers’ smoking rates remain much higher than in the general population, where nicotine use stands at about 20%.

The OCS, which I wrote about here is uniquely placed to collect data on the smoking history of its over 5,000 poz participants.  Importantly, the study also routinely collects health and wellness data extracted both from patient’s charts (including mine – I’m a participant via St Michaels Hospital’s Positive Care Clinic) and from annual interviews.  So it’s possible to connect the dots between smoking and health/quality of life outcomes over an extended period. That’s essentially what a study entitled “Effect of Smoking on Mortality and Morbidity in the OHTN Cohort, 1995-2007” (1), presented by Qu Cui at last year’s OHTN Research Conference was about.  And just to be clear we are talking about the impact of smoking on death rates (mortality) and morbidity (illness).

Not unexpectedly, the study shows much higher mortality rates in smokers and former smokers than in non-smokers. Ditto hospitalization.  Ditto respiratory disease. Ditto lung cancer and death (about three times the rate in non smokers.) Ditto cardiovascular disease. And a slower response to ART as measured by CD4 counts than in non-smokers.

Qu Cui summarized the study’s main conclusions thus:

  • High smoking prevalence with decreasing trend
  • Higher risk in smokers of . .  

Death

Hospitalization

Chronic Obstructive Lung Disease

  • Slower gains in CD4 counts after ART initiation in smokers

There’s more bad news in other OHTN–sponsored research using OCS data. Let’s have a look at a study from T. Bekele et al, a paper presented at the 2010 AIDS Conference “Cigarette Smoking is Associated with Poor Physical Health-related Quality of Life Among People Living with HIV” (2). This study, which included 1,019 participants, also used OCS wellness data, collected  through  a review of medical charts and annual interviews on such issues as mobility, mental health, mastery and other quality of life markers. 

This research’s conclusions? After adjusting for other factors, current cigarette smoking was associated with significantly poorer physical health-related quality of life.  In fact this impact was second only to the impact of housing, a much more publicized variable.  Negatively impacted by smoking were psycho-social variables like depression, stress, HIV-related stigma , HIV symptom distress, social support and mastery. (Mastery is the extent to which people have control over what happens to them, the decisions they make and whether they are able to deal effectively with problems.) 

To improve the quality of life of people with HIV the study recommends  . .

• Health care providers should routinely assess cigarette smoking behavior and the presence of factors that may place people at increased risk for cigarette smoking (e.g. heavy drinking, high level of stress).

• Clinicians should educate patients on the health consequences of smoking and encourage them to participate in smoking cessation programs.

• People with HIV need smoking interventions that address their unique social, economic, and medical needs.

These findings, by the way, complement those in this study of New York poz smokers which  specifically recommends a greater role for ASOs in smoking identification, cessation programming and referrals. 

The theme of the need for smoking cessation programs is also picked up in another study by Qui et al (Effect of smoking on lung function, respiratory symptoms and respiratory diseases amongst HIV-positive subjects: a cross-sectional study)  (3)  Conclusion?  “Effective smoking cessation strategies are required for HIV-positive subjects.”  The study looked at poz participants’ respiratory function and concluded “Current smokers were at significant higher odds to present respiratory symptoms compared to non-smokers, but former smokers were at the similar risk compared to non-smokers.”

Incidentally, research on people living with Hep C such as this, where there is  a 63% smoking rate, has shown a similar correlation between smoking and reduced health-related quality of life in that population.

It seems the cost on health, health-related quality of life and life span of a smoking habit is well demonstrated.  But what’s the economic impact – the hole it makes in poz disposable income? How much does it cost to smoke in Ontario today?  None of the studies quoted measure that fact. However, poke around the data, as I did, and there are some clues. I found them in the Champix study ("Safety and Tolerability of Varenicline Tartrate (Champix/Chantix) for Smoking Cessation in HIV-Infected Subjects: A Pilot Open-Label Study”) (4). This study, by the way, again makes the point “After appropriate initiation of ART, smoking cessation may be the single most important intervention for improving long-term survival and quality of life in HIV-infected people.”  This small scale study of 36 Ontarian HIVers who smoke one or more cigarettes per day showed the mean number of cigarettes consumed per day was 18-20, depending on the site. So let’s use the lower figure of 18 cigarettes per day. Using a 2010 published retail cost of $80.16 for one carton (200) of cigarettes, the average monthly cost to each of those smokers was about $216.

I mention those estimates here only because, in my case at least, the economic impact of smoking was a powerful factor, a decade or so ago, in the decision to quit.

Conclusions

These are mine, not the researchers, and they don’t come without bias. But we ex-smokers are an opinionated bunch. We can become, and in fact often are, loud advocates for smoking cessation programs and I’m no exception. But as people who have been there – we talk about the value of lived experience in other areas (think GIPA) - we want and need to be listened to.

I wrote in an earlier article here about the absence of AIDS Service Organizations (ASOs) in the smoking cessation arena.  Many, it seems according to US research, do not ask questions about smoking upon client intake and few offer cessation programs or routine referrals. That despite the fact we know that most (65%) of smokers want to quit.

I’ve heard no coherent explanation for this omission from the ASO community, a community which is otherwise appropriately committed to health and wellness programming. But as a rule, ASOs take a harm reduction approach to addictions. But here’s the thing. Harm reduction isn’t a good fit with nicotine addiction. Cutting down on smoking does little to improve the health of a smoker (although it WILL improve their bank balance). It’s the hard truth - and we seldom talk in these blunt terms - that they need to stop, not cut down.  So research that points to why is important.

Clearly one can’t force people.  One CAN point to the benefits of doing so, however, and ASOs need to do more of that.  But ASOs can only reach a small section of the PHA population who want to quit; most PHAS never connect with ASOs at all - and there are other links in the health care service  chain that need to step up to the plate too.  My doctor may have asked me if I smoked once – but that was eighteen years ago.  Our entire care team should be made aware of our smoking history – yes medical people, you need to ASK people – and be proactive in channelling people who want to quit towards cessation programs when they are ready. And if they aren’t ready, we need to help them get there.

I don’t want to infer though, it’s not about us HIVers taking the initiative too.  If we are lucky, we can draw on the power from within that has nixed many a smoking habit, including my own.  And those of who HAVE quit owe it those of us who haven’t YET, but who want to, by lending a helping hand.  And by trying to fix a broken system that has yet to get serious about a problem whose negative consequences are so well documented by research like the OHTN's.

References

1) Cui, Qu; Thabane, Lehana; McIvor, Andrew; Smaill, Fiona; Cooper, Curtis; Raboud, Janet; Waring, Virginia; Rourke, Sean B.; Smieja, Marek; for the OHTN Cohort Study Team

2) T. Bekele, S. Rueda1, S. Gardner, J. Bacon], M. Ragan, R. Kennedy, S.B. Rourke, and the OHTN Cohort Study Team.

3) Qu Cui1,, Sue Carruthers, Andrew McIvor, Fiona Smaill, Lehana Thabane, Marek Smieja.

4) Qu Cui, M.D., M.P.H., Linda Robinson, BScPharm,Dawn Elston, B.A.,Fiona Smaill, MBChB, M.Sc, Jeffrey Cohen, M.D., Corinna Quan, M.D.,2Nancy McFarland, R.N., Lehana Thabane, M.Sc., Ph.D., Andrew McIvor, M.D., M.Sc., Johannes Zeidler, Ph.D., and Marek Smieja, M.D., Ph.D.

Jun26

#HIV – Twitter 101 for people with HIV

Tuesday, 26 June 2012 Written by // Michael Bouldin Categories // Social Media, Living with HIV, Media, Michael Bouldin

Michael Bouldin: "If you’ve spent more than a few minutes online – and if you’re reading this, odds are you have – you’ve probably seen it: ‘Follow me on Twitter’, or ’Follow us on Twitter’". What does this mean? Michael explains - and more!

#HIV – Twitter 101 for people with HIV

#HIV – Twitter 101 for people with HIV

(This is Part 2 of a series on social media and HIV. Read the first installment here. Part 3, Twitter 102 – Twitter as an information channel, coming soon.)

If you’ve spent more than a few minutes online – and if you’re reading this, odds are you have – you’ve probably seen it: ‘Follow me on Twitter’, or ’Follow us on Twitter’. Usually, those words link to another web page, one usually hosted on, you guessed it, Twitter.com.

Following in this instance means something different than trailing hot boy/girl X around the bar. What it means is, simply put, that you sign up to receive short text messages – coincidentally limited to 140 characters – whenever that person or organization deems fit to send such a message. Those messages are cutely called ‘tweets’. If you call them ‘twits’, by the way, you’ll be kicked off the Internet.

Tweets are, in the online universe, a haiku next to the Iliad of, say, The New York Times. They are, of necessity, short; there are roughly half a billion users who send a total of one hundred and seventy five million tweets a day. That’s maybe twenty five billion characters a day; by contrast, the Bible has only three and half million. In short, you’re looking at an enormous amount of data, enough to require a biblical lifespan and then some to read them all. That being unlikely, you’ll need to edit and choose what you look for. More on that in a bit.

So how do you use Twitter, especially as a person with HIV or AIDS?

If you already have an account, you can skip this step; if you don’t, click on over to Twitter and create one. You’ll need a valid email address and a good, memorable password.  Many people use their full name or a recognizable nickname; if you value your privacy, that’s perhaps not the best idea. Personally, while my main handle (that’s what these accounts are called), @MichaelBouldin – is indeed my real name, for a while, I had a separate handle just for my HIV tweets. You should keep in the back of your mind that tweets are public, unless you affirmatively choose otherwise by deleting them outright or ‘protecting’ them, which simply requires that you approve whomever wants to follow or read you. If you do decide to tweet under your real name, it’s a great idea to have a profile picture of yourself; that will make your virtual presence more real and relatable to other users.

One you have that account, you’ll see several new and interesting things. The first is your very own Twitter page that lets you do nifty things: add custom backgrounds, post a short bio, your web site, and put up that nice head shot. If you take a look at my Twitter page, you’ll get the idea. And remember, none of this is rocket science. Twitter’s audience is, statistically, less well educated and younger than that of Facebook, for example, and the technology reflects that awkward fact. On the plus side of that ledger for advocates, however, is the simple fact that we really do want to be talking to younger people.

For that, Twitter is perfect.

To get started, you might want to look for people you know who are already on Twitter; friends, family, the usual drill. Then you can get more granular and do a subject search, say, for HIV, or gardening, or your hometown, whatever interests you. Odds are, there are quite a few people you’ll find just that way. The Twitter site itself has, at the top of the screen, several options to help you; they’re titled ‘Connect’ and ‘Discover’ respectively, and they help you do exactly that. These are geo-tagged, in part to help users discover one another.

The next step is to follow whomever you’ve found, and presto, your stream – that is, the tweets you’ve signed up to read – will begin to fill up. Pretty soon, you’ll want to wade into the conversation and send your first tweet; to lose your Twitter virginity, as it were. Trust me, it’s not quite as bloody painful as the other kind, and takes less time and effort.

So, now that you have your account, some followers, and are following some folks yourself, it’s time to go pro.

One of the first things you’ll discover is that the Twitter site is not satisfactory for more than extremely casual use. So you’ll want to get what’s called a Twitter client, i.e., a standalone piece of software that you can run off your desktop, your smartphone, laptop, tablet, whatever. Two Twitter clients are Tweetdeck and Twitter’s own stand-alone app; both are free. With Tweetdeck – and many other clients – you can manage your Twitter, Facebook, and God alone knows how many other accounts, all in the same interface. A word of caution: if you maintain different accounts for different purposes and audiences, make sure you send the right content to the right destination.

Another thing you’ll notice is that there are odd number signs – # – attached to a given term. Those are called #hashtags, and are very useful when you want to participate in a very specific discussion – such as on #HIV or #AIDS. To use a hashtag, just type it into the body of your tweet; some clients will even autofill a hashtag or suggest popular content-related tags. A great place to discover popular tags – on a scale from global to neighborhood – is TrendsMap.

Not all tweets are created equal. There are tweets, mentions and the big prize, retweets. The latter are when someone takes one of your tweets and simply rebroadcasts it to their own followers. Bingo, you’ve just reached an entirely new universe of people with your message. The more you yourself retweet, the more other users will notice you, by the way, because Twitter alerts its users whenever that happens.

Speaking of followers, there are several good ways to find them: for example, check out directories like Twitaholic or WeFollow. Get listed; you can even create your own lists. Topically, you’ll want to save searches whenever you can; that’ll spare you some typing and, because all of this moves at the literal speed of light, precious seconds. It also lets you find users interested in the same subjects you are (they can find you in much the same way, of course). A lot of folks, coincidentally, follow back as a matter of routine, so that’s another growth tool. A great idea is Follow Friday – a tweet with the hashtag #FF sent, wait for it, on Fridays– where you simply tweet out new followers, interesting accounts, whatever strikes your fancy. #FF is a nice way to simply acknowledge other people, the equivalent of a friendly nod on the street.

As with tweets themselves, not all followers are created equal either. Social media are in principle very egalitarian; you don’t need a fancy degree or a Swiss bank account to use them. That said, other users will judge you, sometimes rather harshly, based on whom you choose to follow yourself, and who follows you. A good discussion of this concept is here. Simply put, some accounts are spam, for pornography – on the Internet, imagine that – or just dolts who will broadcast their latest bowel movement to an anxious world. In real time. If an account like that follows you, and they will, don’t be shy: just block them.

Standard practice (and my approach as well) is to take a look at the page of whomever you’re thinking of following. Look at who they follow and who follows them. This sounds a bit snobbish, and in some ways it is, but as with all things in life, you’re judged by the company you keep.

When and where do you want to tweet? Anywhere and everywhere, but after work hours and on weekends, volume is lower, so you’ll have a greater chance of being noticed and  shaping the conversation. Statistically, your tweet will be seen in a feed for just a few seconds, so you want to make those seconds count. It’s considered good practice to tweet a few times a day, more if you’re at a special event. If that’s the case, ask around if there’s a dedicated hashtag; odds are, there will be, and people will be following it.

What do you want to tweet? There is no one answer to that question, but some basic parameters would be: tweet your blog, if you have one. Tweet interesting news stories, and do include the link (if that link messes up your character count, you can shorten it here). Quotes generally do well, as do pictures. If one of your tweets does exceptionally well, don’t be afraid to re-use it; this repetition is standard practice and not considered bad manners. Unless you do it too often, so use good judgment. Another very sound practice is to check your facts; just because something is on the Internet does not make it true, so do some basic due diligence.

How do you tweet? The first rule to remember is that you only have 140 characters. That’s not a lot (there are services like Twitlonger for the clinically verbose, but tweeting being an art as much as anything else, tweets longer than the norm are frowned on by the cognoscenti). So train yourself to be pithy and incisive. Find your own voice. Be interesting. Be consistent thematically, but leave some room for the unexpected. Use abbreviations where possible. Choose short hashtags. If you can, tweet at other users; for example, to send a tweet to yours truly, put ‘@michaelbouldin’ in your text. I will see that. It’s fantastic if you want to annoy someone.

As do all social spaces, Twitter has its own peculiar etiquette. Some of these rules are just plain common sense. For example, never beg; if you want a retweet, just let your words work their magic. Never beg for followers either (or, God forbid, buy them outright, as some services will let you. It’s a waste of money and looks awful). Don’t tweet under the influence (unless you’re very funny). Make a point of engaging in conversations and acknowledging other people; this is, again, just basic good manners. Many people, and they know who they are, think of social media as megaphones; they’re not. They’re conversations, so act accordingly. One thing you should absolutely never do is set up an auto-responder that sends some generic drivel-tweet to every new follower; that practice, while not entirely uncommon, is considered the Mount Everest of boorishness. When you get a new follower and are sufficiently excited, just tweet directly at them; it may sound like a small thing, but the devil is in the details.

Lastly, boys will be boys, and we compulsively measure everything. A great tool to measure your impact on social media in general is Klout. If you have so much as a Facebook account, and who doesn’t, Klout has already assigned you a score from 0 to 100. This score is based, to simplify it somewhat, on the volume of activity you generate in the social media universe. So you really want to have a high score; the higher your score (and the more followers you have, of course) the more seriously you’ll be taken. Believe me, people watch Klout scores with all the intensity you might expect to find directed at young, unattended children. If you have a score under forty – the average is twenty – you’re not going to make the door in some nightclubs; I shit you not. There are more actually relevant drawbacks, but you get the idea: bigger is indeed better.

So, now you know what to do. Tweet away. Coming up next: using Twitter to find and disseminate information. Stay tuned. 

Jun26

Getting Tested BLOWS

Tuesday, 26 June 2012 Written by // Guest Authors - Revolving Door Categories // Health, Sexual Health, Revolving Door, Guest Authors

Matt Smith from AIDS New Brunswick guests with more of “Let’s Talk About Sex… And Let’s Try To Keep the Cliché’s to a Minimum “

Getting Tested BLOWS

This article first appeared on the blog of AIDS New Brunswick here

We’ve talked about the importance of Language and Environment, and how There are No Stupid questions, now let's take that information and apply it more practically.

Let’s talk about getting tested, and knowing your status. Getting tested is a crucial component in preventing the spread of HIV, and other STI’s and Blood Born Pathogens. Being self-aware allows a person to take charge of their body and make informed life decisions. Getting tested, in my opinion, also BLOWS. Even if you’ve used condoms and are 99% certain that you haven’t contracted anything, that remaining 1% will eat you up. Once that seed is planted, it may very well be the only thing you think about until you hear your test results.

There is nothing quite like having that thought mull around one's noggin for days, weeks, months, maybe even years, until the decision is finally made to seek testing. What happens when a person comes to this conclusion but doesn’t know how to execute it? They call my office. Here, nestled in what we lovingly refer to as the bowels of the Victoria Health Centre, sits our quaint little AIDS Service Organization or ASO for short (Non-profits LOVE acronyms and initialisms). Hardly a day passes where myself or one of my colleagues doesn’t receive a phone call or email from some poor frantic individual worried about their HIV, Hep C or STI status, and is in need of assistance to help learn it.

The questions are surprisingly similar, “how do I know if I have X?” Sometimes we get “do you know (PERSON), do they have X?” This one always confuses me, as if we would give out that information, even if we had it. Nearly without fail, all inquirers contain a reciting of a series of ‘symptoms’ that have been read about after Googling whatever infection they are worried about.

I’ll let you in on a little secret: I was once one of these frantic people calling my local AIDS office looking for help. Back in what I now refer to as my wayward-youth, I met a guy who was about 7 years my senior. Assuming that he knew all about the workings of sexy-time, and with it the risks, I agreed to have unprotected sex with him. One day later, guilt stricken about what I had done (I was still very much in the closet), and not really having proper access to Sex Ed., I was CONVINCED that I had caught HIV. So, that night I sat down at my computer and Googled ‘HIV symptoms’. Worst. Idea. Ever.

As I read through the list, which I’m pretty sure was a blog, not even a real health site; I began to realize that I seemed to have many of the symptoms listed; fever, fatigue, soar throat. One in particular stood out in my mind, night sweats. Looking for any relief, I focused in on it. Remembering that I had not experienced this, I began to feel a little better, perhaps it was all in my head. That night I SOAKED my sheets. Well, let me tell you, that was it for me, I was sure of it now.

I now know that for many STI’s and blood born pathogens, the ‘symptoms’ are usually described as “flu-like”. This is because you’re immune system is working to fight the new infection, fever, fatigue, SWEATING, all symptoms. So sure, my body might have been reacting to an HIV infection, or THE FLU, a cold, my seasonal allergic reaction to everything related to Spring and Summer. But nope, I had convinced myself it was HIV. Please note that by this point I had not yet seen a health professional.

So like my callers turn to our office for help, so did I to my local ASO. I, like my callers, explained to the faceless person on the other end of the phone what had happened, and they told me the same thing I tell my callers, “you cannot know your status without being tested”. I am sorry to say, and was equally sorry to hear, that one cannot be tested for HIV over the phone, via email, or even through a check-up. We’re going to need to give some blood, and possibly piss in a cup, depending upon what it is we’re getting tested for.

My next phone call was to my family doctor. When his receptionist answered the phone, I explained to her that I was just feeling a little under the weather and wanted a check-up, embarrassed to admit to this person that I really needed blood work for HIV. I got my appointment and waited. When I finally got into see him I explained that I was concerned about my HIV status and would like some blood work. He asked if I had engaged in unprotected sex, when I told him “No, no, of course not! Just better safe then sorry” (insert awkward laugh), he explained that I was not at risk of HIV and did not order the test. Okay, I lied to my doctor about my risk, that was dumb, but he has been my doctor since I was born, he knew my parents, my family. How could I admit to this person that I was out having unprotected sex, WITH A MAN?

Finally, after a few weeks had passed again, I built up the nerve to go to the after hours clinic. There I explained with tears in my eyes what I had done and “REALLY” needed to be tested. They wrote the order for blood work, and the next day I skipped class and went to the hospital blood clinic.

The process of getting to the blood clinic, excruciating, actually having the blood drawn, “just a little prick”. Now we play the waiting game, this is the point where some of us swear that if our status comes back negative then we will happily live a life of celibacy, doing only charitable work. The test results come back, and we react to them accordingly. Regardless of how the test(s) come back, a person now knows, there is no speculation, no guessing, they know.

If a person’s test(s) come back negative, then hopefully that anxiety and worry will stick with them and they will be more self aware of their bodies, and choices. If positive results are found then we can help with that too. Prevention is only one part of what our ASO does, we also do support for people living positive. It’s not the end of the road. There are lots of Positive people who live long, healthy, happy lives. But I’ll leave that blog topic for our Support Programs Manager, Diedre.

What matters is that we know our status, negative or positive. We need to be able to take care of ourselves, and others. Using protection, and knowing what’s happening in our bodies is how we prevent the spread of disease and infection. Getting tested BLOWS, it’s scary, daunting, and sometimes we lie to people to spare ourselves the embarrassment, which makes it even harder to get help. But, incoming cliché, knowledge is power, it’s how we stay healthy, and help keep other that way as well.

Get Tested.

Matt Smith is the Prevention Programs Manager at AIDS New Brunswick. 

PORTRAIT OF THOUGHTFUL YOUNG MAN
© Igor Petrović | Dreamstime.com

Jun25

Amra Ki Etoi Bhinno....Are we so different.

Monday, 25 June 2012 Categories // Arts and Entertainment, Movies, Gay Men, Population Specific , Sex and Sexuality

Movie review. Devan Nambiar reports in on "a phenomenal sensitive document on Hijra and Bisexual/Gay community of Bangladesh.”

Amra Ki Etoi Bhinno....Are we so different.

Amra Ki Etoi Bhinno was recently screened at the Kashish 2012, 3rd Mumbai International Queer Film Festival, India's (and South Asia's) biggest Queer Film Festival. It was awarded 'The Best Documentary Short Film 2012' at the screening. Kashish 2012 was held in Mumbai, India, and featured 120 films from 30 countries. The movie is 37 minutes long. You can see the entire documentary below.

This movie offers us a rare glimpse into the lives of gay and bisexual men and transgender women living in a country where homosexuality is a criminal offense. But it also shows incredible resilience in the face of adversity and social oppression. The men and women in this movie live a life of love, acceptance and hope.  Without playing the victim card, they demonstrate integrity and self-respect for who they are in-spite of the obstacles.

It forces many of us living in the west with so much privilege to ask how we would function in such a repressive environment. The charcaters discuss their place in Bangladesh’s society, where heterosexuality is viewed as the norm. They talk of their relationships, falling in love, joy and acceptance. I loved the honestly and raw emotions shown by the various men and women in living their lives. “The film talks about a range of masculinities and its impact on people's lives and about how different people have unique experiences of coping and surviving in Bangladesh, often ruled by strict masculinist and patriarchist ideals. The stories of those who challenge these strictures and notions are told in this film in their own words.” 

As said best by the internationally acclaimed film critic and writer Mayank Shekhar, who spoke on behalf of the jury at Kashish 2012, "it's a phenomenal sensitive document on Hijra and Bisexual/Gay community of Bangladesh. This film speaks from the heart and reveals stories of sheer courage and deep hurt. It's a bold account on men and trangenders fighting for space in a completely patriarchic world. The characters in the film bare their souls in front of the camera, and what is left is a film that is as unique as its characters. It's a phenomenal film!"  A must see!

This film is produced by Bandhu Social Welfare Society, Bangladesh in collaboration with TEG Mediatech Pvt. Ltd.

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