HIV Cure clinical trials: perspectives from an HIV+ person

By Barbara Kingsley

In this post, we hear from Barbara Kingsley, an HIV-positive individual in South Africa, about her experience with HIV and what a cure would mean for her and for South Africa.   Barbara works with the Positive Heroes organization which is an educational, awareness and self-help action campaign that draws on the huge power that positive role models living with HIV and enjoys running Marathons.  She has also worked with the  searcHIV team in South Africa.

On 29 December 2000, my life changed forever. It was the day that I was diagnosed HIV+.  Over the next 8 years I lived in a state of superficial acceptance only.  I was fine with being HIV + provided that I didn’t show any symptoms.  I believed that I was the one person that was going to survive this.  Eight years later my luck ran out. My CD4 counts had nosedived to just 86, I suffered from all the textbooks symptoms of AIDS, and exhaustion became my faithful friend.   I resigned myself to the fact that I was probably going to die.  I didn’t know what ARV’s can do.

One day I woke up and decided that I was going to fight for my life. Shortly thereafter, I began ARV treatment.   Not only did I survive, but despite having no previous running experience or no natural running ability, I began to run for the first time in my life.  From a slow 5km three times a week, I trained myself up to ultimately complete my first Comrades marathon (90km) in 2013.  Running over the finish line of the Comrades will remain one of the greatest accomplishments of my life.   Not only have I accomplished beyond my wildest dreams, but I have also gone on to become a motivational and inspirational speaker.

HIV has taught me to be strong. It has taught me that there is nothing that I cannot do. It has taught me to step out of my comfort zone and not to take anything for granted It has shown me an incredible strength that I had always possessed, butuntil the time I became seriously ill, never knew that I possessed.   I believe it’s a strength that every one of us possesses to a degree.  It has shown me the magic to be found in this world, and I feel like HIV has been a stepping stone into an existence of infinite possibility.

Not everyone, however, has been this fortunate.

I have asked myself many times, why are so many in this world are dying from HIV / AIDS, yet, almost 15 years later, I am still alive.

There are so many factors to consider, such as socio/ecomonic factors, of which poverty plays an enormous part.  Stigma is yet another factor, of which there are many different kinds:  employment stigma, government stigma, healthcare stigma and social stigma to name a few.

I have often thought to myself if a cure was found, how would this change my life?  The truth is that it wouldn’t.   I would continue the incredibly happy life I lead, except I wouldn’t take my medication twice a day. That’s it. And of course  I wouldn’t have to disclose my status to potential love partners.

The same cannot be said for millions of others.   I believe that a cure would have a massive impact on millions of people, alleviate the strain on the South African healthcare system, prevent a huge percentage of our workforce dying in the next decade, and halt the devastating reality of child run households.

I believe that HIV trials for a cure are absolutely necessary but it’s not an option that I would ever explore.  What I am doing currently doing works for me.   I fought so hard for my life, and my struggle has changed me in the most unbelievably positive way.  I could never put that on the line to once again risk my life for an uncertain future.