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Aging

Jan21

Storytelling at the crossroads

Thursday, 21 January 2016 Written by // Don Short: life in transit Categories // Aging, Don Short: life in transit, Health, Treatment, Living with HIV, Opinion Pieces

Don Short on advances in prevention methods says “I, and many others, welcome an end to HIV/AIDS. We will get there but a clearer road map is needed, including the seasoned experience of HIV positive folk who have walked the road before us”

Storytelling at the crossroads

These days, newsfeeds are posting more details around the fight against HIV/AIDS. Everyone is in a twitter and depending on what you read, you are either seeing major advancements in HIV prevention or watching the clock go back thirty years as stigma and discrimination escalate.

We are at a crossroads, and the intersection is a hub of activity. 

Science is accelerating to combat HIV infection through prevention strategies moving us closer to a vaccine and cure. This is to be applauded as we wait for the unimagined zero new infection rate to be attained. For those of us who have lived with the virus for awhile (us meaning the folks they call long-term survivors), we get to see a generation armed and ready to keep HIV at bay, at least for those who can access PrEP and afford the cost.

But here’s the thing. I have this inner angst about the whole thing. I like HIV prevention in principle but not the bigger campaign behind it. I am hesitant, based on the media focus on scientific advancements without equal billing for the current survivors and their lived experience.

We have a generation of men and woman who for the first time can make declarations that would have been ludicrous in the mid 1980s. Hearing someone say “I have been HIV positive for 30 years” is like a sweet symphony on the ears. Antiretroviral medications, education, support and personal health management have done this. Wow! We have come a long way! But it’s not without battle scars, moments of desperation, episodic illness, personal triumph, anger and stubborn persistence. These are the stories and experiences that create the backbone for what’s next on the campaign horizon.

In the busy intersection of old meets new, as science and medicine march forward, HIV prevention technologies are all the buzz. Go online, look around, check your apps; there’s a whole lot of messaging that can distract and dazzle. Just as the promise of a longer life span is materializing for people living with HIV, the issues and concerns of people growing old with HIV are sidelined once again. There are realities that speak to lived experience far beyond research data and online questionnaires.

Managing the complexity of HIV infection day by day, year by year is not a walk in the park. I, and many others, welcome an end to HIV/AIDS. We will get there but a clearer road map is needed, including the seasoned experience of HIV-positive folk who have walked the road before us… an invaluable resource to have on hand. That’s how this whole HIV/AIDS movement began in the first place. No one knew what was going on when the AIDS crisis hit hard but those who stood up and told their stories brought support and advocacy for their plight. Many died and others lived, and their stories are told or being lived out in real time. Their resilience is our roadmap. It’s a great buffer to hear their stories, especially from those who have ingested HIV medications longer than the age of some of the PrEP candidates.

I started to think about this as I was in conversation with an HIV-negative guy on PrEP. He was on it for about six weeks and shared that he was going to take a break from the meds for a week or so. The side effects were disagreeable (gastro-intestinal cramping) and he could always go back on them.

This is where I shared in his discomfort - my own stomach was churning. For a few minutes, I allowed the former HIV educator/caseworker to step-in and spin out a few questions to point out the intricacies around such a decision. Have you talked with your doctor about it? Did he explain to you that adherence is the key to effectiveness of the treatment? Do you know that if you do something risky while on a break from PrEP you could contract a virus that is resistant to Truvada and PrEP may not work?

I got a duh look and realized he had no idea how to answer most of my questions. In fact, he never thought about it.  My discourse was not rocket science but science, none the less.

It was obvious from my encounter with this guy that something is missing in the HIV prevention dialogue. There’s a lack of transferable knowledge coming down from doctors to patients who are accessing PrEP.

I find it paradoxical that funding is being funnelled into prevention campaigns and programs at the same time that support is being stripped from ASO mandates. The message emerging from all of this is creating an assumption that HIV is manageable and sufficient time has been given to support resources to assist anyone who now lives with HIV infection. Yet, for the first time, more specialized support is needed as long-term survivors are the first generation to grow old with HIV and face complex situations and decision making around aging, retirement, etc.

What about the senior man who is widowed, and for most of his life, has never had to worry about condoms due to a long, monogamous relationship? He is not abreast of HIV prevention and does not use the internet. He travels south and has a surprising encounter with another senior gentleman. He contracts HIV. His reality has now shifted and he is thrown into a new arena. His experience is not that unique but his access to PrEP is somewhat out of his scope of reach. He has a right to access PREP but the precipitating factors of his experience give us a scenario to consider...a story at the crossroads.

Someone can, and will, contract HIV while we wait for this new world coming with zero infections.

I have a daydream that I wish could be realized in 2016. We are all at the crossroads - all of humanity. We have arrived at that agreeable place where we have to let go of pride and arrogance and judgement. Stigma and discrimination are not evidenced in our verbiage or actions. As a world community, we acknowledge that HIV is an individual and collective experience that has touched everyone. We respect the diverse experience of men and woman who champion the cause and show support to those who live among us with HIV.

Science provides the medications, the prevention technologies, and is about to formulate a vaccine and/or cure as a believable promise ahead. But wait! What makes this daydream far reaching and magical is the visual I see at the crossroads. Along this border are special designated seats for those who have travelled long distances with the virus. Nothing about these folk makes them stand out from the crowd except one thing. They are surrounded, in listening circles, by those who are about to take on PrEP. Their stories are captivating. There is so much to glean from these heralded warriors who share how they have travelled a long distance to get here.

It’s time for storytelling at the crossroads.

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