Remember when the slogan ‘assume everyone is HIV-positive’ was floated around the gay community with regard to potential sexual partners? One problem with this approach is that not only is it disingenuous and simplistic, but it doesn’t take into account individual circumstances. Two confirmed HIV-negative people don’t need to treat each other as if they were positive. Likewise, the choices that HIV-positive people make when having sex with an HIV-negative partner may be different for very good reasons.
Slogans like these also encourage individuals to make assumptions that may be incorrect.
Following on from this, the notion of ‘shared responsibility’ entered our community discourse. Shared responsibility is a much better ethic, it’s both noble and honest, but this mantra also strikes me as problematic: it’s far too easy to interpret ‘shared’ as meaning ‘equal’.
Frankly the burden of ‘responsibility’ is inherently unequal between a person who is HIV-negative and one who is not. For example, there is no legal requirement for an HIV-negative person to disclose their status to their sexual partners, although there is the possibility that an HIV-positive person may acquire an infection other than HIV from their HIV-negative partner.
Perhaps a better notion than ‘shared responsibility’ might be ‘shared respect’: we all have the right and responsibility to care for ourselves and for other people, but we also need to respect each person’s right to make choices for him or herself.
There are many roles or activities that we as HIV positive people can play in HIV prevention efforts, while acknowledging that it isn’t useful or realistic to go back to simple statements developed during times of great uncertainty such as ‘assume everyone is HIV-positive’ or ‘use a condom every time.’
As we learn more about HIV we also gain a much more complex understanding about the relative nature of the risk of HIV transmission and we can develop strategies that reduce the likelihood of HIV transmission within a framework of honesty and shared respect.
Here are ten ways in which HIV positive people can participate in HIV prevention.
1. Use condoms and lube for casual sex
OK, this one’s pretty obvious, but condom use remains the cornerstone of our success in HIV prevention. Condom use by both HIV-positive and HIV-negative people in Australia remains high and we can all be proud of that. Condoms are easy to find and using one is often easier and more practical than having to disclose your HIV status, especially during a casual encounter. Using a condom can eliminate the worry that you might have infected someone, and can also help prevent a whole range of other sexually transmissible infections (STIs) that can have negative health consequences for positive people.
2. Use risk reduction strategies
Risk reduction is a contentious issue in HIV prevention education. Some people argue that we should be working to eliminate risk altogether and the only way to do that is by adhering to condom use at all times. In practice, we know that most gay men use condoms most of the time during casual anal sex. For those people and those occasions when condoms aren’t used, it’s important that people understand the particular risk inherent in different circumstances and situations — the unspoken norms at a sex club may be different from those in the bedroom, and different sexual practices have different levels of risk.
Risk reduction strategies that can reduce the likelihood of HIV transmission, not eliminate it, include such things as withdrawal before ejaculation and the role one takes during sex (i.e. top or bottom). If you are not going to use condoms all the time, it is important to understand and accept the risks of such strategies: risk reduction is not risk elimination.
3. Know the difference between unprotected sex and unsafe sex
Not all unprotected sex between two individuals is necessarily unsafe with regard to HIV transmission. It may seem like semantics, but the difference is important. It is impossible to transmit HIV between two known HIV-negative individuals; social researchers pointed out this reality a number of years ago, calling it ‘negotiated safety.’ Likewise, unprotected sex between two HIV-positive people carries no risk of HIV infection, although the risk of reinfection with a different strain of HIV or with another STI remains important.
4. HIV-unknown does not mean HIV-negative or HIV-positive
I am always surprised by the number of individuals who, because their last HIV test was negative and even though during the intervening time they potentially may have been exposed to HIV, assume they remain HIV-negative. Sometimes people assume that because they’ve been unsafe they must be HIV-positive and throw caution to the wind as a result. For many HIV-positive people, the HIV status of a potential partner affects the choices they may make about the type of sex they are willing to have with that partner. Someone of an unknown HIV status cannot be assumed to be either HIV-negative or HIV-positive, eliminating some of the risk reduction strategies that are available when both partners know their status.
5. Keep your viral load low
This is especially important for people who sometimes have unprotected or unsafe sex. Low blood viral load does not necessarily equal low viral load in semen, and it’s possible for viral load levels to fluctuate quite remarkably, but we do know that people with lower viral loads are, generally, less likely to transmit HIV. Some people are able to maintain a low viral load without going on HIV treatments, but for most of us taking antiretrovirals is the only means to low viral load, and not everybody gets there. Remember also that during treatment breaks your viral load usually increases, and that viral load might also increase during times of illness or when you have an STI. There is a link between how much virus there is in your body and the likelihood of transmission; this is important to consider if you are having sex without condoms.
6. Develop an open and honest relationship with your doctor
The value of having a good relationship with your doctor cannot be overstressed. For most of us, our treating doctor is our primary source of information in dealing with HIV. Ideally, in order to maximise your quality of life (which includes your health status) you should be comfortable enough with your doctor to discuss the questions you have about your health which consequently will impact upon the choices you make. Doctors have access to an enormous range of information that can help in taking care of yourself. While not everybody has access to a choice of doctors, finding one you feel comfortable with and being open in talking about your life enables your doctor to provide you with the best possible information and care.
7. Get regular tests for STIs
It is easier to transmit HIV if you also have a sexually transmissible infection such as gonorrhoea, chlamydia or syphilis. Some STIs can be more difficult to treat and may be more aggressive in HIV-positive people, and many do not show any signs or symptoms. Even if you regularly use condoms and lube with casual sexual partners, it’s still a very good idea to make ask for tests for STIs as part of your regular visit to your doctor.
8. Stay healthy
For some of us, health is an elusive state that we have to work hard to achieve; for others it seems so easy. Some of us manage to remain optimistic and cheerful despite significant health burdens, while for others even minor illnesses can be tough to bear. Staying healthy is as much about your emotional state as your physical wellbeing. It varies from person to person and over time, but certainly it has become clear and social research seems to indicate that self care, particularly the choice to take and stick to antiretroviral therapies, and consequent reduction of viral load is linked to better prevention outcomes.
9. Disclose your HIV status
Easier said than done. For a lot of positive people, this is probably the most difficult aspect of living with HIV and one that requires a great deal of confidence, skill and expertise in reading people and contexts, especially during casual sex. Sometimes it just takes one negative (over)reaction to put you off disclosing your status altogether. Some HIV positive people find disclosure isn’t such a big deal, while others find some environments easier to disclose in than others (such as on the Internet or ‘one-on-one’ as part of foreplay and courtship). The truth is that the fear of rejection is tough for all of us. Building your disclosure skills and perhaps developing a ‘thick skin’ is something we can learn from each other as positive people. If disclosure is difficult for you it may be a whole lot easier to just insist on using condoms.
10. Tell your story
Some of the best prevention programs — those that effect change on multiple levels by changing knowledge, attitudes and behaviours — are those that place HIV-positive people in a central role in their design, implementation and evaluation. Sometimes the role of HIV-positive people is explicit — such as speakers’ bureaus that send HIV-positive people out to talk to people in their own communities. This is more than simply ‘putting a human face onto AIDS.’ These initiatives place HIV-positive people directly in the centre of what is a highly effective and accessible form of prevention education.
Other, more subtle but equally effective, prevention programs are those that include the real-life experiences of HIV-positive people in their construction — incorporating real people’s stories and voices into the learning experience in ways that have a powerful impact upon the audience.
But there is often a fine line between the presentation of ‘real stories’ and ‘fear based campaigns.’ Attempting to motivate people to change their behaviour through fear and coercion is extremely difficult and rarely succeeds. In HIV prevention it often victimises or demonises HIV-positive people. A comprehensive HIV prevention strategy supports HIV-positive people, it does not alienate them. Without the active cooperation of HIV-positive people some prevention campaigns may be very limited in their impact and even possibly counter-productive.
I believe that it’s time for a new ethic around HIV, sex and prevention: a ‘culture of care’ in the words of social researcher Michael Hurley. In this culture of care, disclosure is easier and does not result in discrimination or stigma. We look after ourselves and each other while maintaining respect for each person’s right to choose what works for them. Our choices are informed through strong, albeit imperfect, evidence. But most importantly we all understand that each of us carries an important and unique role in minimising the negative impacts of HIV/AIDS on our communities and ourselves.
*Brent Allan* is the Hunter Branch Manager at the AIDS Council of New South Wales and is NAPWA’s Education Co-Convenor.
