Care and Support reloaded

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For all of us involved in the fight against the HIV epidemic for the last 15 years and more, it’s been amazing to have witnessed some outstanding achievements. Globally the morbidity and mortality due to AIDS has seen a significant decline, and the incidence of HIV infection has reduced dramatically.

Many of us have experienced this journey with all its ups and downs. I am sure each of us have many anecdotes, stories and experiences that define our current thinking. I have one such story that I would like to share here; it is an incident that happened many years ago when I had just started working in the HIV and AIDS sector. I was called in to talk to a group of PLHIV who had congregated to demand for treatment services and, quite frankly, free treatment. Yes, it was those times, when free treatment was a distant dream. Globally, there was an overwhelming pressure on national Governments and donors to provide treatment, no matter the cost. During my discussions with the group, there was one particular gentleman that I had the fortune of meeting. He was then a healthy man in his late twenties or early thirties, who was HIV positive. During a conversation with him, I asked him what he does for a living. Candidly, he replied, “nothing.” Upon inquiring further, he mentioned that prior to knowing his status, he used to be a fruit-seller, but after he learnt that he was HIV positive, he just stopped working.

That memory has haunted me ever since. Why would somebody simply stop everything he/she was doing upon knowing one’s HIV status?! After years of learning, working and experiencing the HIV epidemic in many roles, it dawned upon me that during those turbulent times, our man had just simply given up. He must have been broken time and again, due to the multitude of depressing messages he must have received and the imminent future facing him, as he perceived, would have been a bleak, shameful and lonely death; it would break anyone’s spirit and willingness to live, let alone trying to make a living despite the necessity. Within two years of our meeting, India declared free ART to all. I sincerely hope he made use of it and lives a healthy life now. I could never get myself to trace him, no matter how desperately I wanted to and perhaps still want to know of his wellbeing.

Times have changed and what perhaps has not changed is the attitude towards care, support and treatment. In the era of universal availability of ART, PLHIV living healthier lives due to a manageable chronic albeit lifelong therapy has proven potent and effective. As India embarks on the test and treat strategy, it also needs to critically change its sympathetic view towards HIV to a more positive empathetic mind-set. Testing people for HIV and putting them on treatment if found positive may sound to be the most humane thing to do and perhaps will be definitive in ending AIDS in near future. It is crucial that the implementation is carried out very carefully to achieve desired result.

The approach and mind-set of only ensuring viral suppression and thereby reducing its transmissibility to negligible levels to end AIDS in the near future is perhaps history repeating itself from the early years of the epidemic in the mid-80s. If the HIV epidemic has taught us something, it is that we cannot perceive PLHIV as mere patients of HIV – but as contributing actors who stop multiplication of virus, save themselves and of course save others. The need of the hour is to look at the situation more pragmatically, and see PLHIV as humans and citizens with equal rights. Test and Treat would have to be comprehensively implemented to ensure that the needs and wants of those affected are addressed holistically, and perhaps complemented by the new age care and support – one that empowers individuals to take responsibility and ownership of their lives as opposed to one that treats them as mere beneficiaries of a public health programme.

The author of this blog is Dr. Umesh Chawla, Director: Policy & Programme at India HIV/AIDS Alliance. He has been working for more than 15 years in the HIV/AIDS sector

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