Author: Communciations

After a conversation about treatment, trials and cure, Neil questions the unequal burden of expectations, assumptions and impacts for our community.

It seems that at least once a week I read a sensationalised story in the media about the end of HIV or finding the HIV cure. Today, thanks to modern anti-retroviral medications, we actually have a functional cure already. However, I can’t help wondering if our seemingly endless quest to find the mythical Excalibur of HIV does us all more harm than good? This was the question leading a circus in my head this morning at 5am. Sure, my old foe anxiety had woken me with a head full of thoughts about the subject but I suggest these issues weigh up against other considerations that we trade-off or ignore, to our detriment. Why are we so obsessed about a one-size-fits-all-fix?

I hadn’t given much thought to the subject of cure until the other day when I was chatting with a mate about hep C. He had gone through the hep C treatment but hadn’t been able to clear the virus. Some people are lucky and hep C anti-retroviral meds have a minimal impact on their body, but my friend had a reaction to one of the drugs. Fortunately he is resilient and well educated about the virus and knows he still has plenty of options available. Besides being aware of the physical effects, I caught a glimpse of the mental health impact this could be having on my friend when he mentioned he hadn’t cleared the virus. Treating hep C once again will test his resilience. As he goes for more tests to explore some of the newer treatments that may be more effective for him, it means another round of treatment and side effects which pose trade-offs he will be considering very carefully.

When I was first diagnosed with HIV five years ago, I was eager to start anti-retrovirals (ARVs) as soon as possible. I placed more weight on my decision to start because I needed to feel in control of the virus. I was frightened because I felt different to the norm now that I had to factor my diagnosis into life’s big decisions. I believed that by taking a pill, it would somehow change the way I felt about myself. It was my own way of dealing with the diagnosis.

Despite the evidence back then and still today that while HIV is a chronic and manageable condition, my diagnosis took an unnecessary toll on me because of stigma and discrimination, both perceived and actual. I spent many hours back then dreaming of a cure because I was fearful of what living a life with HIV would mean to me. I still remember what that fear felt like, and my own false expectations of an unnamed impending doom.

If I had the opportunity today to have a cure that may or may not work or just continue with my treatment as I have taken it for a number of years now, I believe I would be less inclined to allow my post diagnosis anxiety make an emotional decision for me. We know treatment works, so if it ain’t broken why mess with it? Also, now that I have had an undetectable viral load for some time, today I wonder if my life would be that different if we found a cure?

When talking about a cure for HIV or hep C, the language we use builds up expectations on what this could mean to us. I’ve been asked this question by kids many times whilst speaking at schools about living with HIV. I love their directness. What would a HIV cure mean to me? Speaking honestly, the only area of my life this would have any real impact on would be my career since I work in the HIV sector and the number of pills I take at night before bed. When I think of a cure, to me this would be the eradication of the virus from my body. I am still going to be left with whatever damage already done.

I’m not suggesting we stop looking for a cure, but I think we must challenge our assumptions about these medical conditions. HIV and hep C are health issues, not moral dilemmas. Today, people are still needlessly showing up to the hospital emergency room with opportunistic infections or AIDS-related illnesses. Why? Because of fear. They are too afraid to test regularly, if at all. It’s clear to me that the effect HIV or other blood borne viruses have on our health starts with our mental health long before we even contract the virus. That is the lasting effect of stigma, much of it internalised. A HIV cure won’t help any of us feel more normal, or more attractive or just more socially acceptable. At the end of the day it’s a virus. A treatable one. It doesn’t change who we are.

In our journey to find the holy grail of HIV cures, today we have a functional cure. ARVs allow most of us access to treatment in NSW to live long and fulfilling lives. I feel the more important trade-off in the discussion of cure, like undetectable viral load, is the fact it applies to only some of us. What does this mean for those of us who will never achieve an undetectable viral load?

We must ensure another generation of PLHIV are not left behind.

Neil Fraser

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