Below are several articles I have written for Positive Living, the magazine of the National Association of People Living with HIV/AIDS. Further details can be found on their website www.napwa.org.au.

Here are three articles covering very different subjects:

1. "A Letter to the Newly-Diagnosed" is a letter to people who have just been diagnosed with HIV, giving my thoughts on how they might approach this difficult time of adjustment to living with the virus.

2. "Bareback Surfing" is a look at approaches to involving positive people in HIV prevention campaigns worldwide and an acknowledgment that an increase in unprotected sex between gay men has presented new challenges for AIDS educators.

3. "Fortune in My Eyes" is an article which looks about where we are with treatments and survival with HIV in 2003 -- from the perspective of someone who was told he would not survive for more than three years after being diagnosed with my first AIDS-defining illness in 1989.

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An edited version of this article appears in the June 2004 edition of Positive Living magazine, a publication of the National Association of People Living with HIV/AIDS

A LETTER TO THE NEWLY-DIAGNOSED

 by David Menadue

Six months ago, I was lucky enough to have a book published, an autobiography called Positive which largely focuses on my experiences with HIV/AIDS. One of the most rewarding things that has happened in that time has been the number of positive people who have come up to me and thanked me for sharing my story, a lot of which they found in common with their own experience of living with the virus.

A number of the people have been newly-diagnosed and have read my book because they wanted to get some idea of what to expect about being HIV-positive. While I think most of these people are going to have a much better time than those of us diagnosed in the eighties, given the current treatments environment, I would have liked to have talked to these people for longer than a couple of minutes … when they have come up to me at a gay bar, at the Midsumma Carnival and in one case, at a service station. Here is something of what I might have said to those people who have just received their positive diagnosis, if I’d had a little longer…

Thank you for your comments about my book. I’m glad you found something in it to help you through what is probably a fairly difficult time coming to terms with your positive diagnosis. I really would have liked to have talked further with you, rather than our rushed conversation, so here are a few further thoughts on coping with living with HIV.

My first bit of advice is not to believe everything you hear on the subject, including from me! The virus will affect everyone in different ways: for some, life will go on pretty much as normal for years before the need for treatments (a few rare people have never needed them over a twenty year period!) but for others, something about the virus they have will see T-cells drop and viral loads rise to concerning levels, within a short period.

For some people the reaction to becoming positive will be highly traumatic; for others, it will simply be a matter of putting the problem to the back of your mind, something to worry about when you really need to. I have talked to many people over the past two decades about their feelings about becoming positive and for most, there is no denying there is an initial shock and a difficult period of coming to terms with what it all means. I can understand you seeking out the experiences of another positive person as you did in buying my book – talking to someone who has been through the same thing can be one of the most comforting and reassuring things you can do. AIDS Councils and People Living with HIV/AIDS groups have known this for a long time – and many offer peer support groups (often for a six-week period) where you can meet other positive guys and talk through some of your uncertainties about your diagnosis. If you’re not keen on joining a group, Peer Support Officers or counsellors are often available for one-on-one sessions.

Some of the emotions which might be running through your head might include feelings of guilt about picking up the virus – how could you have ignored all the warnings about HIV, slipped up on your promises to yourself around safe sex or accepted the assurances someone gave you about their status? Without wanting to sound trite, it’s no use crying over spilt milk(or other liquids, in this case!). None of us are perfect when it comes to sex or even intravenous drug use, if that’s how you came in contact with the virus. There are so many fragile emotions at play when sexual negotiation takes place, for instance: concerns about your sexual attractiveness and your level of self-esteem, decisions made on misunderstandings or in moments of weakness, maybe on drugs or alcohol. It’s understandable you may feel regret because of the potential health problems you may face but it will be destructive if you punish yourself too much for your diagnosis. There are many of us, including people like myself, who have had numerous AIDS-defining illnesses, who now live good quality lives without too much fear or stress. Regardless of how you might be feeling now, be assured that you will adjust and learn to live with the past, with every likelihood that any health problems that come your way can be treated and managed successfully.

When I was first diagnosed some twenty years ago, I was less worried about becoming ill then I was about being rejected by sexual partners or even at that stage, by friends who didn’t understand that you couldn’t pick up HIV through casual contact. While I think there are few people these days (compared with the hysterical eighties!) who believe the latter, I still think there are some people, unfortunately, who still have problems with the idea of having sex with a positive person. It is a reasonably irrational response particularly if you are offering to have protected sex with the person but it is an issue that I still find myself having to deal with in 2004.

Maybe you will be one of those confident positive people who are able to disclose your status upfront to a prospective partner, thinking that if the person is not interested solely because of your status, then you wouldn’t want to know them anyway. I admire people like that but I find myself only able to tell people whom I’ve got to know after a few sexual contacts. I rationalise that by that stage a partner will have learnt to find other aspects about me to like, beyond my serostatus. Many partners have not cared in the slightest when told them anyway, figuring that they are living with the reality of HIV as a part of their sex lives and they have learnt to protect themselves through using condoms. 

There is always the chance that you will encounter another positive person if you disclose anyway and of course that reduces the angst about the possibility of infecting a partner, although there are some concerns about the issue of superinfection (whether one positive person can pass a drug-resistant strain of the virus onto another, which leads to problems when that person needs to take treatments).

Issues like that though are scientifically uncertain, with many positive people chosing to err on the side of risk when they’re told that the likelihood of the situation occurring is limited to about 5% of cases. Becoming literate around all the ongoing treatment issues associated with HIV can be a demanding task; even learning all the names of the various antivirals or the medical terms associated with HIV can look incredibly daunting.

Those of us who lived through a time when there were no HIV treatments and then when there were inadequate ones in the early nineties, learnt to follow the progress of new therapies as if our lives depended on it – because in reality, they did! These days there is a much better understanding of how to treat HIV and an arsenal of different antivirals that can be used against it. Soon after the new generation of treatments was introduced in the mid-nineties, scientists had the idea that if you hit the virus hard and early with the treatments, it would preserve the immune system from damage and be the best for the long term. Then it was realised that these people were developing resistance to the antivirals as quickly as the more treatment-experienced people which was limiting their long-term treatment possibilities. There is now general consensus that people should be started on HIV treatments when their T-cells get to around the 350 mark or their viral load gets to around  ?       .

There are different treatment scenarios for different people though, including the theory that it is a good idea to treat people who have just become positive with a burst of treatments to avoid the immune system becoming overwhelmed – and then to introduce a treatment break to help the body recognise the virus and try to mount its own defences to it.

 If this all sounds a bit complicated, don’t panic! While you are going to have to understand a few basic medical terms like T-cells and viral load counts, your doctor is going to be able to walk you through this learning curve without too much fuss. It will become incredibly important for you to have a good relationship with your doctor from now on, though. Whether you end up on treatments or not, monitoring what is happening with HIV in your body is going to involve at the minimum six-monthly visits to your doctor (some would argue for three-monthly visits). You will need a few basic blood tests to determine whether you need to start treatments or if you are on them already, whether you might need to change the particular regimen.

People with HIV have challenged the traditional idea that doctors are the only source of wisdom when it comes to looking after their health. In the early days when there were few options, many of us looked around for alternatives to Western medicines to try to control HIV in our bodies. Some therapies like macrobiotics, acupuncture, Chinese medicines and naturopathy have had some benefit, particularly in looking after your immune system when it is still relatively healthy. Mind you, limiting your vices like alcohol, cigarettes and late nights can also help, but that goes without saying!

Ultimately for me, it has been Western medicines that have saved my life and I am a great believer in antivirals for those that need them. I have had to endure some nasty side-effects (such as diabetes, high triglycerides and changes in body shape), which can come from long-term use, but I don’t think I would still be here without them. Hopefully you won’t need to take them for some time – and by the time you do, it would be nice to think that there are simpler, less toxic treatments (maybe a treatments vaccine?) – but whatever you do, please try to develop a confident and trusting relationship with your doctor. Don’t be afraid to tell him/her your fears or reveal your ignorance about something. Or to speak up for yourself if things are not going as you’d hoped. Your comfort levels about treatments have to be right as taking on antiviral treatment will involve some commitment to take them as instructed – or risk having them not work for you.

 I hope you also develop a comfort level about the idea of living with HIV, pretty soon if you haven’t already. It is no longer the stuff of Grim Reaper TV campaigns or sensational stories about positive people being shunned or discriminated against – for the most part. You can live a very normal life now without the huge uncertainty that was once associated with the virus. I can’t pretend that it is all going to be easy, without a few hitches or rejections along the way, but to quote Gloria Gaynor, you will survive!

And stay a little longer to chat next time! You will find you can gain a wealth of information from other positive people as well as some good old-fashioned peer support. We all need that some of the time.

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This article was printed in the February 2004 edition of Positive Living, a publication of the National Association of People Living with HIV/AIDS.

BAREBACK SURFING

by David Menadue

Over the summer break I went surfing. If you think that means I stuffed my scrawny little 50 year-old body with my lipo’ tummy into a wetsuit, got into a Kombi van and spent my days hanging around the Great Ocean Road with my surfie mates, then you’ve got the wrong end of the surfboard. I can only dream…

No, I went surfing the Internet to find examples of what other HIV agencies around the world have done to involve positive people in campaigns to help prevent HIV transmission. I was doing research as part of my role as a Board member of PLWHA Victoria to see what novel or innovative approaches to HIV education involving positive people have been tried and proven successful. We are interested in putting proposals to the AIDS council and government on programs that we could be involved in.

At a recent planning day for our organisation, all the positive people on the Board want to do something to help reduce the rising number of infections in out state. Board members spoke of their frustration with dealing with gay guys on Internet chat sites who are either negative or unsure of their HIV status who are asking for bareback sex with seeming indifference to the consequences. They also want to help other positive guys through some of the difficulties around sexual disclosure and negotiation that are such a common part of many of our lives.

The first site I visited was probably a lesson in what not to do if you are preparing a campaign by positive guys to get across a message to HIV-negatives. Stop AIDS San Francisco (www.stopaids.org.au) produced a campaign which is still running called “HIV is no Picnic”. In it a bunch of pos guys have agreed to be photographed (with eyes blanked out where faces are shown) revealing huge bellies, sunken cheeks, skinny arms and legs: all the telltale signs of lipodystrophy. There are also posters in which the pos guys speak about the diarrhoea, nightsweats and the other unpleasant side-effects of taking HIV antrivirals. The line under some of the posters is: “Don’t get me wrong - I’m glad to be live but HIV is no picnic”.

This “scare-the-hell-out-of them approach” certainly caused some controversy when it was first distributed through gay venues in San Francisco. The organisers (all positive guys themselves) said that, with almost 50% of the estimated gay population of the city now HIV-positive, it was time for drastic steps and to show people who were still negative that it wasn’t easy living with HIV. Pos guys themselves though reacted badly against the ads saying that, as well as depressing them when they entered their favourite venues, it also “outed” them to those who didn’t know the symptoms of HIV lipodystrophy. They also feared that these dramatic looking pictures would scare off positive people from taking treatments when they needed to: they would think they were automatically going to look like the people on the posters.

There may be some merit in this “shock! horror!” approach but I doubt whether it would be followed here—particularly if it was to turn others off treatments in the future. Surely there are ways to talking about the realities of living with HIV (maybe still using this direct style of positive people as talking heads) in a campaign we could develop here without sending overly negative messages to positive people. Some will say that it is important to mention treatment side-effects but there are enough issues for us to fill a dozen posters: sexual disclosure, living with uncertainty, fear of discrimination, rejection by partners and so on.

When it comes to campaigns that are directed solely at pos people – maybe again using messages from other positive people, we are entering relatively new territory for educators. It has been a “no go” zone for some time with AIDS councils and plwha groups because of the general consensus that the risk of further stigmatisation of positive people is greater if some people take a message out of the campaign that we are the main cause of the spread of the virus. It is clear that it takes two to tango, both partners have to take shared responsibility in any sexual act when details of status are not known. Such an approach must surely as no one would want a repeat of that horrible period of scapegoating of pos people that occurred in the gay community in the eighties when HIV first reared its ugly head.

If these campaigns continue though, is there room for targeted campaigns for positive people as well?  The HIV Stops with Me campaign has tried this recently. See www.hivstopswithme.org.  This group, which started in San Francisco, has produced a series of slick advertising messages made by positive people to try to reach a positive audience on prime time TV and press ads for mainstream and gay newspapers in large US cities. This thought to be the first time that HIV-positive people have been the target of a public media campaign about HIV transmission. Producers dealt with the fears about further stigmatising pos people by suggesting that they were the main reason for the spread of the virus by saying that these messages are going out to big US cities where there is a large population of gay and positive men and marginalisation is not such an issue. The ads have created a group of positive supermodels – or really they hope, role models who travel around participating US cities (where the counties have contributed funds for the campaign) and meet with pos groups and do local media.

The messages from the positive models (five men and one woman) in the TV advertisements and in the print ads include:

Life’s important to me. Even the lives of guys I don’t know.

Rejection is not as bad as infection.

Disclosure is liberating

I have HIV and I have sex.

I still feel good the day after.

Before HIV I didn’t want to use condoms. Now I do.

The TV commercials were timed to take place during supposed peak gay viewing times in cities like San Francisco: during Will and Grace, Buffy the Vampire Slayer and Star Trek Voyager! On-line pop-up messages from the campaign were used on Internet chat sites, local mainstream and gay newspapers ran the advertisements and postcards were distributed around gay venues. Seven different cities adopted this largely CDC-funded campaign with what seems to be remarkable success.

The 2002 Evaluation of the San Francisco campaign said that 79% of gay and bisexual men were exposed to the campaign messages 3 or more times in its six-week duration. 71% felt positively impacted by the campaign and 54% of the positive sample said they were more likely to use condoms with HIV-negative or unknown status after viewing the commercial. Nearly 43% of respondents said they were more likely to disclose to partners before sex.

These results all sound rather incredible and might have some educators asking the question: why aren’t we rushing out and getting the cameras warmed up right away! The first problem might just happen to be the funding: the millions of dollars given to this campaign by the Communicable Diseases Centre (CDC) in Washington, supplemented by local counties with large gay populations, might not be so easy to find in our current fiscal environment here. We certainly have much smaller, highly concentrated positive populations in this country: would a mass mainstream campaign be the most cost-efficient way to reach them anyway? And even if it were, would commercial TV accept this type of advertising, given the squeamishness about accepting advertising for gay venues in a number of capital cities recently!

Some HIV activists have expressed concern that, while these ads have their place, they should not be so prominent as to detract from the shared responsibility message. There is a concern that, given the very conservative Federal Government and the Bush administration it will be easy to push too much of the responsibility for curbing transmissions onto positive people and that more punitive measures may be developed against those who have occasional unsafe sex.

There is also the Internet which must remain one of the most powerful and probably under-utilised means of getting safe sex messages across, including to pos guys.. I was interested to discover the approach taken on the website of the AIDS Committee Of Toronto, Canada (www.actoronto.org) on the page of their site entitled “Bareback Sex and You”. This seemed to be remarkable for the style of communication used – the direct non-nonsense language and the lack of value judgments in the advice that is given. Their intro reads:

Some men choose to have ‘bareback sex’(anal sex without a condom). At ACT, we encourage men to practice safer sex by using latex condoms and water-based lubricants for anal sex. This is the best way of avoiding HIV infection, reinfection with a strain of HIV, or infection with other sexually transmitted infections. However, we also respect the decisions men make for themselves. Our hope is that men can make fully-informed and conscientious decisions based on accurate information, if they choose to engage in anal sex without a condom.

This approach is clearly trying to reach individuals who are not going to respond to the “Don’t do it” or “Stop Doing It” premise that the HIV Stops with Me campaign is working on. Maybe it would be controversial for some AIDS Councils here to adopt this approach which seems to condone unsafe sex (sometimes) but it clearly is trying to reach people – particularly those already taking risks – with language and thinking which they can readily relate to. I think this following answer to a question from a guy about barebacking is probably an effective approach.

I feel guilty whenever I bareback. Why do I sometimes slip up and have unprotected sex?

We’re all human. Nobody is perfect. Try to better understand the situations in which you get involved in barebacking. Where are you usually? How are you typically feeling? What reasoning do you use to make it acceptable to yourself? Does your partner pressure you to bareback?

The reality is that some men feel that sex without a condom is more care-free, more pleasurable and more exciting. Others are worried about rejection or losing an erection. If you want to use condoms for anal sex (and there are good reasons to do this!), there are ways you can experience intense pleasure and intimacy without barebacking. There are ways you can learn to wear a condom and keep your penis hard.

This straight-talking no-bullshit approach should be tried here, in my opinion – providing answers to difficult questions about barebacking. And some HIV organisations are already doing good things in this direction already. PLWHA NSW (www.plwha.org.au) has commenced an extensive health promotion campaign for pos guys under the title “The Words to Say It”. Promotional material has been distributed around venues and sexual health forums are being held in surburban and regional areas of NSW. The forums aim to get pos people discussing difficulties around sexual disclosure and negotiation as well as discrimination, rejection and sexual health questions.

The AFAO and NAPWA Education team (ANET) recently produced two excellent publications, Having a Life and A Positive Diagnosis which provide good advice on the gambit of issues around coping with a positive diagnosis and the pressures of living with HIV, including sexual health questions. See www.afao.org.au for more details. We are providing messages to address positive people’s broad health needs. More work needs to be done though by HIV organisations around the country to involve positive people in HIV prevention efforts and to provide us with support to discuss issues around that all important subject: sex. Now back to my surfie mates….  

An edited version of this article appeared in the February 2003 edition of Positive Living.

FORTUNE IN MY EYES

by David Menadue

My trip to Europe will be first class, with several weeks at the Ritz in Paris. I’ll then bolt down to the Greek islands and hire a boat manned by beautiful Greek boys for as long as I please. Of course there’ll be a big spend-up at the Fifth Avenue shops in New York.

Yeah, you’re right…I’m dreaming, imagining what life might be like if I won one of those recent jackpot prizes with Lotto. Until I realise that such dreams don’t really matter. I’ve had more than my share of luck in life, surviving HIV and AIDS. I can hardly spend too much time wishing for Lady Luck to shine on me: she’s already given me a reasonable amount.

As we move into 2003 and I commemorate my fourteenth year with an AIDS diagnosis (over twenty years with HIV), I still find it hard to believe that I’m still here. How I managed to squeak through with less than ten T-cells for five years and be around for the treatments revolution in the mid 90s. And even then, that my body has not given up on taking highly toxic drugs for so long and has kept enduring such a range of side-effects.

Not that I’m crowing about it. I’m no better than anyone else for this achievement, certainly no stronger or cleverer than my many friends who have died with AIDS over the last couple of decades. I put my survival down to medical expertise, life-saving treatments in the last seven years, some wonderful support from friends and family and a bloody big dose of luck.

The support of close friends and family was particularly important in helping me through my difficult patches. Coming out about my AIDS diagnosis to my family had the most powerful effect on my relationships with my parents in particular as somehow it healed a lot of misunderstandings between us and helped me to feel truly accepted by them for the first time in my life.

I was lucky in this respect because as we all know from the stories of friends, revealing important things like the fact that you are gay or have HIV to family, workmates or even close friends can go terribly wrong and not work in your favour. My parents just happened to appreciate my honesty (after years of big secrets) and, whether it was because they thought we only had a short time left together – or just because they loved me anyway – we got on famously after my big pronouncements and it helped my survival enormously.

I was also lucky with the pattern of my illness. I happened to contract six AIDS-defining illnesses over a five-year period in the early nineties but none of them concurrently. What I saw happen with many of my friends is that they came down with several conditions all at once and the combined burden on their immune systems was too much for them. In many cases these conditions were worsened by chemotherapy or radiotherapy for cancers like Kaposi’s Sarcoma or Non-Hodgkins lymphoma. Or their livers and kidneys failed after long periods of treatment with toxic drugs to treat CMV infections, particularly retinitis.

For whatever reason, I never developed those particular conditions that required such toxic immune-suppressing treatments that ultimately your health was compromised as much by the medicine as by the virus itself. All my illnesses, while pretty nasty at the time, were self-limiting and they all responded to treatment, sometimes against medical predictions. When HAART came along my body was ready for more torture, surprisingly, and I have cruised along reasonably well ever since. 

I am mentioning this, not to give myself some undeserved pat on the back but to try to give a positive perspective amongst the madness of HIV. Many of my friends regard their contracting of HIV as the worst luck they have ever encountered in their lives. While they are often prepared to admit responsibility for the situation, they look at negative friends who have pursued similarly risky sex lives and ask, “Why did this have to happen to me?”

A friend of mine who recently become positive has sensibly not dwelt on the reasons for his seroconversion. What’s done is done, he says, let’s cope with it and move on. However he does seem to be mentally stuck on what he regards as his enormous bad luck in being infected with a particularly aggressive strain of the virus. He can fairly accurately pin down the time he picked up the virus but couldn’t believe the rapidity with which it started to knock off his T-cells and his immune system. Within about three months his T-cells were in the low 200s and his viral load above 50 000. We’ve all heard of increases in viral load in the early weeks of infection but the depletion in T-cells and the continuing viral load problem after six months had him in a state of panic. Quite rightly, I think, he started treatment much earlier than he would have expected. He has been quite depressed to find himself in this situation so quickly.

My friend’s situation shows me that even in a time of real promise and efficacy around treating HIV, some people can still have a hard time getting the virus under control. Still worse off are those who find they have some sort of reaction or severe side-effect to nearly every antiviral they try – if there is an adverse event to be had, they get it and end up hospitalised for their trouble. And the people doing it the hardest are those who are not responding to treatments at all – although my perception is that with new treatments like T-20 and tenofovir for instance, the numbers without any options left these days are fairly small. 

Rather than see our particular pattern of illness or our experience with HIV as one that is dictated by fate, by the stars in the heaven or some other nonsense though, I want to make the point that, to some degree, we all make our own luck. You see, I have chosen to see the way AIDS has played out for me as a fortunate one. I have always done so, taking an optimistic outlook despite some fairly gloomy prospects. I could have dwelt on what might have been: on a life without the stigma and fear of discrimination associated with HIV, one where it was not so difficult to find a partner or to fulfill my career goals. Instead I went with whatever circumstances came my way and tried to adapt accordingly. Resilience and endurance have to be two essential qualities for surviving any chronic illness. 

My friend with the aggressive virus can chose to focus on the problem it presents for him or he can thank his lucky stars that he is still likely to survive the ordeal. Not many of us with HIV are living on the edge in terms of our prognosis these days: take it from someone who has been there, that is definitely something to be grateful for! The treatments climate, while far from perfect because of all its side-effects and complications, has given us some security that we will be around for a few more years—and with any luck, survive until something approaching a cure is found.

Our mental approach is still important. It affects the way we handle having to take drugs, how carefully we take them, how easily we are put off by their side-effects and how optimistic we can be when our clinical markers are not as we’d wished. Or for those who don’t need to take treatments yet, how you look after your immune system in the best way you can. We can be thankful that we can still lie on our backs and look at the stars: only don’t trust everything you see in them! Ultimately you are the master of your own destiny.

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