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HIV: When will it sink in that undetectable = untransmissible?

HIV: When will it sink in that undetectable = untransmissible?

Craig Burnett wearing black t-shirt, with beard smiling at camera

I was diagnosed with HIV in 2008 when I was only 20 years old.

This was before treatment as prevention (TaSP) had been discovered and in an environment where people relied heavily on condoms to prevent transmitting HIV.

By the time of my diagnosis, I had been living with HIV for some time. I had a fairly high viral load and my CD4 count was low.

The doctors took six months of observations on my health to see my trajectory. After six months, they recommended I go on treatment.

This is a pretty standard level of care for someone newly diagnosed with HIV.

At the time, I didn’t really understand what treatment meant for me; it was just two pills once a day.

I took my medication because my doctors said it was the right thing to do. I very much relied on my doctors taking care of my health after my diagnosis.

It was shocking to me to have been diagnosed with HIV. I hadn’t engaged in any risky behaviour and my shock was compounded by the stigma I had for people living with HIV.

It was an incredibly turbulent time for me and I was not able to properly take care of myself completely.

As such, I did what my doctors said was best for me medically. I didn’t consider whether or not I was ready to start treatment.

Would I be able to handle the side effects? How would it impact my lifestyle and my livelihood? Was I able to properly adhere to my regime?

Thankfully, everything worked out with help and support from my friends, but I was too overwhelmed to fully comprehend what treatment would mean for me.

Shift in thinking

At first, it was a daily reminder of a part of my life I didn’t like. I still took my medication every day, but it was a struggle; I considered it a chore.

One day, I mentioned this to a friend and they corrected my thought: it wasn’t a daily reminder of a bad thing, it was a daily way of looking after myself.

After this shift in thinking, I became more health focused. I joined a rugby team and started going to the gym.

I realised my health and my life are my responsibility. It was around this time I started to become comfortable with disclosing my HIV status.

This coincided with my doctors starting to mention that being on treatment made it unlikely for me to transmit HIV through sex, even without a condom.

This was excellent news.

When I was diagnosed, I didn’t have sex for three months out of fear of transmitting the virus. However, there were only preliminary studies and only doctors knew about them.

There was a lot of stigma I still faced.

Sex is still complicated with undetectable viral load

A lot of people who found out I was living with HIV would not have sex with me, even with a condom on.

They also flat out refused to believe any of the studies I quoted and would retort with saying I was just lying so I could sleep with them.

As much as the science behind treatment as prevention was developing, the social understanding of living with HIV was very far behind.

This put a strain on my relationships and I found it hard to have a partner for more than a few months.

When I finally had my first long term relationship, treatment as prevention was starting to be talked about in the community.

I saw it as a way for me to protect my partner and my partner felt the same way.

Although I no longer have a partner, I still see my treatment as me protecting my sexual partners and my community as a whole.

Emotional impact of treatment

My doctors were very clear about what treatment meant for me physically, but nobody ever told me what treatment would mean for me emotionally.

There is a big push for people living with HIV to start treatment as early as possible because of the health benefits.

However, treatment can be ineffective if the person is not in the right frame of mind.

We, as a community, should be aiming to support people living with HIV as best we can so they are also emotionally ready to start treatment as early as possible.

There are many reasons for someone living with HIV to take treatment; health, to take care of themselves, protect loved ones and to reduce HIV transmissions.

It is important for people living with HIV to go on treatment for the reason which is right for them.

We should not force people to go on treatment just to reduce HIV transmissions; we should aim to get people living with HIV in a position where they are comfortable with treatment, where applicable.

There is still a lot of stigma that casts people living with HIV as irresponsible.

I feel having a community of people living with HIV who are healthy—both emotionally and physically—will help to debunk that myth.

This piece was first published in Living Positive Victoria’s newsletter Poslink and has been republished here with permission.