The New HIV Era

ana Blog, personal story

The following is a personal perspective from a community member. ACAA acknowledges this is not the experience or opinion of all PLWH or those affected by HIV. Despite medical and scientific advances in recent years there are many people in our communities who continue to face significant struggles with an HIV diagnoses, long-term survival, and being significant others to PLWH.

So there I was practicing my own personal harm reduction in the lounge by having a ‘fake’ (non-alcoholic) beer with my buddy as we toasted in 2013 together, a couple days after the fact, but it was a true wish for each other, “Happy New Year!” This environment seems to provide us both with the opportunity for candid, thoughtful, and multi-topic conversations when we’re together.

“I’ll start,” I think to myself as my eyes slowly drift from the table top to the glass at his lips, “How did you react when the doctor said, ‘You’re HIV positive?’” I asked because I knew he’d been living with HIV for over eight months now and yet never appeared freaked-out, depressed, or frantic. He smiled, finished sipping his frosty glass, turned to me, shrugged and calmly stated, “It wasn’t a real big surprise. I didn’t freak out or have this ‘Oh my God I’m going to die!’ moment,” he poked back with a grin delicately shadowing a twinkle of chagrin. I stared back in a bewildered gaze, which clearly showed my puzzlement, appeared as though there were a bright neon sign radiating across my forehead reading, “I don’t get it!!!” With the drinks never empty for long, our conversation ricocheted from one topic to the next. He went on to say that medications were not necessary right now and that he`d deal with that decision when the time came. As to meeting others and a potential relationship, my friend has always disclosed his HIV status and is ‘safety-first’ in his activities. Our conversation varied today, and his responses were consistently casual, unalarmed, and panic-free. Whether it’s just my buddy or (as I suspect) a more general, public attitude towards HIV today, I could not stop wondering, “Why no alarm, concern, or ‘melt-down’?” As I stood at the corner waiting for the walk light, still pondering the questions launched by my friend’s outlook, I asked myself, “What am I missing? Where is the urgency and critical concern that once served as the mobilization engines for HIV & AIDS?” Although our paths had separated, the conversation caused me to rethink my current attitudes about HIV.

As an Educator I actively reflect on my knowledge, skills, and attitudes as they apply to my work and life. Reflecting continually since the conversation with my friend, I am now convinced that I’ve had an epiphany. I’ve upgraded that chip in my brain that harboured the images of wrath and devastation cultivated by HIV and AIDS in the 1980s and early 1990s. My buddy’s brain chip has a current set of information and references based on thirty years of science. My previous memories were ‘old school’ and my brain chip would get into a loop and only process the message, “We can’t let HIV become the death plague it once was!” After thirty years HIV has finally entered a new era, a bold time where we are witnessing discoveries in medicine, science, technology, new approaches to treatments, and an understanding of how HIV manipulates and maneuvers itself. With new young scientists and researchers the possibility of a vaccine and/or cure is growing ever-closer. New public health approaches to HIV prevention have resulted in a reduction of HIV transmissions and AIDS cases throughout the World. With such optimism and technology abounding it is essential that the ghastly and macabre path travelled in getting to this new era not be trivialized or forgotten. I have lost to HIV some who were dear to me and I have supported others in clinical medication trials, helping because side-effects prevented them from providing for themselves. HIV is here to stay—for now. My outlook has shifted; I expect to see more long-lived lives and the quality of those lives improved in the new HIV era.

Those who remember the dark and sombre era before 1996 when HAART (Highly Active Anti-Retroviral Therapy) began), will never forget those memories or soul-bonding experiences that were forged through great sacrifice and loss. As a veteran observer of that time, I realize we have achieved one of the goals we had set at the beginning of this nightmarish ordeal: securing a longer life for those living with HIV. Not only have I a new and forward focussed brain chip, I’ve also adopted the operating system known called, ‘Pozitivity’ — just like my buddy uses! My vision is focussed on the new, twenty-first century HIV era and envisages individuals living longer lives with their families, having excellent health, and having lives free from HIV related stigma. The once very short travelled HIV road with the “Dead End” sign has been resurfaced over the last thirty years. The sign now reads, “Super-Highway” and goes for as far as the eye can see, leading the way to an effective vaccine and perhaps even a cure. Although mostly a chronic, episodic illness today, living with HIV wasn’t always this way. As it was in that dark era, it is the same in the new era – there is no cure for HIV.

Whatever questions and challenges someone may have about HIV, newer, longer-term questions and challenges are pressing and require immediate consideration. The new HIV era is here and science and medicine can control Viral Load [VL] and CD4 .counts. The “Super-Highway’s” hills and turns carry us on a social and holistic approach to HIV. New era challenges include: addressing HIV related stigma, realizing HIV is part of daily life for thousands, speaking openly about HIV, comprehending the importance of planning our own personal health strategy-which includes STI & HIV testing, and publicizing harm reduction as a means of promoting public health. These are some of new challenges awaiting us; I’m sure there will be others along the highway.   

People newly diagnosed with HIV do not often react as I once expected. The overall level of concern seems not to be one of survival, but rather one of —I’m not really sure how to capture the feeling—anxiety, unsureness, or restlessness about the future? My buddy prophesized, “I know I can take pills and still be ok.” I respond to myself, “Well usually, as not all HIV treatments work for all people and side-effects can be harsh. Once started, medications are a life-time gig—every day.” I want to ask my buddy, “What about those future unpredictable sick times needing to be explained to an employer, instructor, professor, teacher, or spouse? Even more thought provoking; who in your family or social circle are you going to trust? I wonder if travels to the areas of the world you talk often about are possible if living with HIV. Are you prepared for the reactions you never thought would come from someone you know? Thinking of having and raising children? If you have HIV, is there something else you could have and not know?” I’m guessing my future conversations with my buddy will eventually get to some of these questions; at some point they will be asked. My friend is very aware that he is living in this new era of HIV where he expects to live a long and productive life. This outlook blends life, health, and a sense of respect both for the virus and for those it infects and affects. The imminent task for those living with HIV is having a plan for the future and for those affected by HIV to be part of those plans.

If living with HIV, one may want to weigh their new-found longevity on the one hand, with the quality of life they want and expect, on the other hand. Will this quality of life include an HIV stigma-free society? Will this new era provide access to all the testing and treatment technologies? Will there be an overall improvement in public health? Answering, “Yes!” to these questions suggests a real change is afoot, yet more questions arise: “To what degree will people living with HIV wage battles, grapple with stigmatization, struggle within structural bureaucracy, or succumb to the effects of judgement by family or friends?” How many challenges can long term survivors and newly diagnosed persons expect to endure and overcome in order to experience this improved quality of life so many are predicting happening in the new era of HIV. My buddy and others feel able to thrive and grow in this era of knowledge and understanding about HIV. How can we bring the best of the new HIV era to the people and groups who need it most? As we travel together along the Super-Highway let us discuss how to best accomplish an acceptable quality of life for those infected and affected by HIV.