Had we lived in a world that was free of HIV there is a very good chance that Freddy Mercury would have turned 65 this week. It’s with great sadness that I noted Google’s splash screen standing tribute to one of our generation’s most talented musicians. One of the many talented gay men we have lost to HIV infection.
Today I thought it might be a good time to look forward and to acknowledge the current challenges we as a community face when it comes to HIV and its current treatments that are available.
Advances in HIV treatment
Freddy Mercury died on the 24th of November 1991. In 1991 treatments for HIV were limited. AZT was one of the most common medications being used with ddC (dideoxycytidine) and ddI (dideoxyinosine) as reserve drugs for those who were not able to tolerate the side effects of AZT. Life expectancy for people infected with HIV was not greatly increased due AZT resistance developing in many people treated.
Today we are very fortunate to have many effective medications that, when used in combination, can reduce HIV virus in the body to levels that are not able to be detected. This has allowed the body’s immune function to improve, though never fully to the level before infection. Life expectancy is now greatly extended, and many doctors are now reporting that HIV infections are viewed as a chronic medical condition. A 2008 Lancet article reported that: “A 20-year-old HIV-positive person starting antiretroviral (ARV) therapy today can expect to live, on average, to the age of 69.” Given that the current expected life of an Australian male is 79, that is a fantastic advance on the previous predictions.
With this increased life expectancy comes new evidence that people living with HIV over a longer period of time appear to be ageing at an accelerated rate. This has lead to the discovery of HIV positive patients having medical conditions normally associated with older generations. Conditions such as heart disease, dementia, cancers and osteoporosis are occurring at much earlier ages than expected in people who are not HIV infected.
Currently the medical researchers are still unsure if this is a result of the HIV virus, current HIV treatments or perhaps a combination of both. While one article published in Science Daily shows that there may be an association with some treatments, the jury is still well and truly out.
Unfortunately HIV treatments are not perfect and there are potential side effects. Common side effects include diarrhoea, headaches and gastrointestinal upset. However particular medicines and combinations can have more unusual side effects such as changes in sensation in the feet and hands, liver dysfunction, and alteration of fat distribution. Careful discussion with your HIV specialist is a great place to start if you are concerned or worried about these side effects or feel you might be suffering with them. Thankfully not all people on HIV treatments have side effects.
Other infections that affect HIV
As mentioned in my post about chlamydia and gonorrhoea, undiagnosed sexually transmitted infections (STI’s) can alter the way HIV interacts in the body.
For people who are HIV positive STI’s like chlamydia, gonorrhoea and syphilis can cause increase in viral load and increased opportunity for the virus to be passed on to other partners. If you are HIV negative, having an untreated STI can increase the chance of infection with HIV if exposed.
For these reasons it’s vital to have regular sexual health check-ups. The current recommendations are to get a check up on a yearly basis. If you have had more then five sexual partners, attend sex on premises venues or have picked up over the internet they recommend having a check up every 6 months or earlier if you have had a high number of sexual partners. Suggested tests include a urine sample for gonorrhoea and chlamydia, a blood test for HIV and syphilis, a swab of the throat if you have given oral sex and a swab of the anus if you have had anal play which includes fingers, toys and rimming. If you have injected substances it’s worth while being checked for Hepatitis C as well.
By having any sexual infections treated it can help reduce viral load if you are HIV positive and reduce the chance of becoming infected with HIV if there is potential exposure and you are HIV negative.
Treatment of people infected with both HIV and Hep C can be tricky as both infections impact on each other. Careful planning of treatment decisions is always best done with your infectious disease specialist.
Safe sex choices in the gay community
When it came to writing this article I have to admit that I have really struggled with this section.
Talking about medical facts is easy; there is research and data, and I’m able to back up what I say with a simple reference to another person’s work. When it comes to talking about safe sex, it is also easy to talk about topics such as “viral transmission”, “potential risks” and there are mathematical models that are able to supposedly offer some sort of reassurance that “behaviour X has y% chance of infection with HIV”. Yet deep inside my gut is a strong visceral pain, a fear that statistics are not able to console. My head is swarming with so many questions that I do not have answers for.
Why does safe sex work when we do not know our sex partner’s status, but if a partner discloses their status paranoia creeps in?
Why do people disclose other people’s status as if they are somehow “protecting people”: “Hey I just thought I should tell you, the guy you are pashing off, you know he’s positive right?”
Why do educated, intelligent gay men discriminate and fear HIV in sometimes cruel and nasty ways that they would never accept if it had been done to them?
Deep inside me I have felt the fear. I have seen the cruelty. How do we as a community move beyond knowing what we don’t want for ourselves to a space where we can support, care and love our friends who are in positions we find scary.
Feeling unsure of what direction to go, I have been lucky to talk with Max, one of the fantastic speakers from PLWHA (People Living With HIV/AIDS) Victoria, and Sean Slavin, a researcher with NAPWA, The National Association of People Living With HIV/AIDS. Two organisations that offer support, care and representation for people living with HIV. Their access to the latest research and understanding of the challenges for many people living with HIV was invaluable.
HIV and discrimination
For people living with HIV the data is very clear. Discrimination exists on a varying scale with times around sexual acts and disclosure of status being some of the most difficult.
Talking with friends who are HIV-positive, they have told me of me of times where they have been chatting to potential sexual partners online or in a bar, and after making their HIV status known the conversation either stops immediately or in the bar situation, “ummm, I need to go to the bathroom” and they are never seen again. For this reason some people living with HIV have reported no longer going to gay venues due to feelings of being isolated or stigmatised in venues that are presented as places for gay men and women to feel safe.
These two quotes from an interesting New Zealand study that looks at people-with-HIV’s life through the lens of geography really hit home for me.
“I feel judged by gay men for being HIV-positive and the only time I have been rejected by anyone is by gay men.” (Oli)
“I don’t go out on the scene anymore because I do feel judged and so I tend to avoid it… I like being at home or cafes…” (Jake)
Do we as a gay community have some way to go when it comes to supporting and caring for each other?
I was recently told about a volunteer training session for a HIV/AIDS organisation that posed the question, “Would you have sex with someone that is HIV-positive?” Almost universally the answer, at least at the start of training, was no. The irony is that for any gay male who has had sex with more than a handful of partners, the chance is that they have probably already done it. If they had sex with them not knowing their status, what is different if they know? Clearly both people are still exactly the same, yet in those posed with this question there is something else going on. Could it be fear? Discrimination?
Perhaps a more interesting way to pose this question would be to create a hierarchy of sexual behaviours to see where people start to say no:
- Would you go bowling with a person with HIV?
- Would you have dinner with a person with HIV?
- Would you hug a person with HIV?
- Would you kiss a person with HIV?
- Would you masturbate with a person with HIV? …
The list goes on and I am sure you get the idea. For the people that say no to bowling, dinner and hugging, clearly behaviours not able to transmit HIV, that is clear discrimination. As the scale goes to more sexually explicit levels of intimacy we enter the realms of fear that might be based around not fully understanding exactly how HIV is transmitted. This is where good quality education has its role.
People need to feel confident that sexual acts they choose are going to be without risk, or if they do involve risk, that they are well aware of what they are dealing with. As I say to my anxious patients, if you feel worried or concerned about something you have done after you have done it, then you need to learn what the actual risk is and then make a decision about whether you want to take that risk on board.
A fantastic pamphlet that talks about this very topic is can be downloaded from NAPWA website:
Real Time: The Truth About Fucking Without Condoms
Be aware that it’s not all about fucking without condoms; lots of different sexual behaviours are discussed. Most importantly it explores your own personal thoughts about various sex acts and how you feel about the potential risks involved.
By having an idea in your own mind about what makes you feel concerned, you can make conscious choices the next time you enjoy sex. Examples include:
- I understand that mutual masturbation is unlikely to lead to transmission of HIV and I am happy to enjoy it with my partners
- I understand that there is a very low risk of transmission of HIV through oral sex if there are no cuts in my mouth that could be in contact with precum or cum.
Before I have sex I rinse my mouth with salty water and if there is a sting there might be a cut so I don’t give oral sex at that time or I might place a condom on my partner’s cock.
If I don’t have cuts I’m happy to give oral but I will not allow the person to cum in my mouth.
I know it sounds a little clinical but that is what works for me. When I was younger I used to really worry about sex. By setting these points of understanding I was able to free myself of the worry and concern about HIV after sex. It worked for me, I wonder if it might work for other people…
By addressing our own personal thoughts and increasing understanding about safe sex we can decrease the feeling of exclusion and discrimination for friends living with HIV.
Safe sex is everyone’s responsibility
Safe sex is everyone’s responsibility. Research data shows a common belief held by people who are HIV-negative that people with HIV must always disclose their status before sex. This sets up a false security in two ways. Firstly not everyone who is HIV positive knows it, and secondly not every person with HIV is going to disclose their status, nor should they be forced to. Again, it’s up to the individual to make a decision about what they will and will not do in the bedroom. You are in control of your choices, as your partners are in control of theirs.
Currently in Australia only two states, NSW and Tasmania, mandate disclosure of HIV status prior to sex whether that be safe sex or otherwise. While this may sound comforting to some, it is of little use if the person does not know they are carrying the HIV virus. Two common examples include a person who has never been tested, or a person who has only recently been infected but is not yet aware. Seroconversion is a dangerous time as viral loads can be extremely high increasing the risk of passing on the virus substantially.
HIV negative people deciding to only have unprotected sex other HIV negative people, also called “serosorting”, is a risky choice. As reported in a recent AFAO discussion paper studies in Sydney and Melbourne have noted that 21% of men who seroconverted were “certain” their partner was HIV-negative during the event in which they became HIV infected. Legislation is not going to protect you from exposure to HIV despite what the government may think.
Click to review the current laws pertaining to HIV disclosure for Australian States
You are in control of your actions. Enjoy sex, understand your options and look after your friends.
Guys I know that this has been a bit of a heavy topic and I’ve really only be able to just touch the surface. I hope that this post will help start conversations, even if they are with yourself about your own thoughts and beliefs. Below are a few links you may find useful:
The Australian Federation of AIDS Organisations
The National Association of People Living with HIV/AIDS
Better Health Victoria’s Guide To Safe Sex For Gay Men
Better Health Victoria’s Guide To HIV Treatments
Avert’s Guide To The History of HIV
As always I would love to hear your thoughts. Even in our third decade of living with HIV we have a long way to go. Please help spread the word by sharing this post. One simple way is to hit the “like” button below. Every share helps!
Yours in good health.