The most deadly symptom of HIV is stigma!

Jason Lupi December 1, 2015

Jason Lupi “came out” in public last year about his HIV status after living with the virus for 23 years. Here he talks about the treatments currently available and the importance of tackling the most deadly symptom of HIV, stigma.

Jason Lupi
Jason Lupi

HIV has never had it so bad. It is being attacked in so many ways, that living with HIV nowadays can be a treatable and manageable condition.

Thirty years ago many people were struggling to stay alive with the virus; the drugs were few, incorrect doses were given and some were so toxic that left many people with life long complications. It was a deadly virus because there was no medication; it still is a deadly virus to those without access to medication.

Throughout the early years many clinical trials were rolled out and different classes of drugs were produced so HIV could be attacked from various angles. This gave rise to combination Antiretroviral Therapy (cART) which is now a common choice of treatment for people with HIV.

I used to dwell on my early prognosis when I had a CD4 count below 10 and a short-term AIDS defining illness. There was a vague period when I felt I was living in a muted limbo between the unknown; did I have AIDS or HIV? Nothing was mentioned. I just got on with trying to manage it as well as I could, and taking my doctor’s advice on which treatment would be best.

A friend recently pointed out: “The ‘AIDS’ model of disease in the early years allowed for a one-way progression; from asymptomatic HIV, then Persistent Generalised Lymphadenopathy, then AIDS Related Complex, before finally an AIDS diagnosis. The move over the last 10 years is to think in terms of early, mid and late stage HIV disease and you can move either way through the disease structure.”

But even long-term living with the disease, (myself 23 years) doesn’t automatically mean you are at the late stages. If the virus is kept under control no matter how long you live, as long as the meds are working – where, I ask, are you exactly in the progression of the disease? And does it really matter?

I am in no way a veteran of the AIDS epidemic but through my experience, I am constantly amazed at the level of advancement in science and the changeable nature of what we call HIV/AIDS.

We are far removed from the headstones of fear of the 1980’s but lots of people are still entrenched in that mind-set. Upon reflection I now view this (very significant time of change), not with guilt or hardship, but with a sobering acknowledgement that the reality of living with HIV prior to cART’s just so happened in my youth.

I not only saw but actually experienced at first hand the struggles and pains of it all; the trials and tribulations, the evolution of both treatment options and of people’s attitude.

These struggles can transform into an appreciation of treatment advancements that can sometimes get overshadowed by a disconcerted, apathetic or ‘c’est la vie’ attitude. This transformation is an opportunity to use in HIV awareness. It helps the removal of shame of living with the condition because HIV does not discriminate; there are no rhymes or reasons, no border controls or class system it prefers. It is a virus that keeps on doing its thing and as long as it exists, science will keep on progressing.

With a structured treatment regime this virus can be kept to an undetectable level, and people can, and do have lives that are no different from anyone else. This is now the normal progression of the illness and we could be educating and explaining this to everyone. Currently the most deadly symptom of HIV is stigma.

Disease control has been around for a long time; advancements are made in every generation and in most areas. In 100 years from now we will look back and think how mad that people used to die of AIDS, just as we now look back and think the same about syphilis or polio. We are a blip in an unfolding history.

People who don’t know their status are putting their own health at risk and could unknowingly be passing it on. Getting tested and starting treatment is vital for everyone’s health.

There are many ways of fighting HIV, here are three:

♦ ARVs = Antiretroviral drugs that if taken properly can reduce the virus to undetectable levels

♦ PEP = A short course of HIV drugs taken soon after any activity which had a risk of transmission

♦ PrEP = A one pill a day prevention option for people who are at high risk of getting HIV

There are around 30 different types of these drugs available. Side effects are fewer and variable in nature and different combinations are numerous. In less than five years time there could possibly be another option available; a once month injection. In 30 years time there may be a vaccine.

Just to clarify – I am not an expert in HIV medication; the points I have mentioned are my own personal views. I am also not being paid by any drug companies and taking AVR’s is by no way an easy feat. In my ‘HIV coming out post’ last year, I wrote regarding the chores of daily medication:

“Sickness and disease is part of everybody’s life; it shouldn’t dictate life. Medication is not a daily reminder of my sickness, but a reminder of my opportunities and freedom, it’s the very ingredient that keeps me alive and I should praise it and respect it. Intolerance, resentment and procrastination were not going to be an option if I wanted to stay well and healthy”. 

I am a human being, I am a son, brother, uncle, and a friend; I am no different from you or anyone else; Please help reduce the stigma of people who are living with HIV, whether privately on their own in the darkness of fear or for people who are willing to be open about it. There is no difference between them.