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Coming of Age: Exploring our collective response to HIV and Aging

Monday, 26 September 2016 Written by // Rob Olver Categories // Aging, Conferences, Events, Health, Rob Olver, Treatment, Living with HIV

Rob Olver reports on this past weekend’s forum from the organization formerly known as the Canadian Working Group on HIV and Rehabilitation (CWGHR)

Coming of Age: Exploring our collective response to HIV and Aging

Rob Olver with Tammy Yates

For me, a young man of 62 who was diagnosed days before retirement, this conference was one that I didn't want to miss, as it would present a rare overview not only of our current response to HIV and aging, but of the data which might inform that response in the future. 

I also witnessed the dawn of a new era. It was good to see the organization formerly known as CWGHR transform before our eyes last Friday night at a well attended reception at Toronto Courtyard Marriott Hotel. More on its dramatic rebranding in an upcoming interview with REALIZE Executive Director Tammy Yates shortly. 

Next day, under the REALIZE banner, we were welcomed by Tammy and David Skitch (Board Co-Chair). Their introductory remarks threw the global situation into poignant relief: 13% of those living with HIV globally are now over 50 and 2.5 million of them live in sub-Saharan Africa, often with myriad barriers to treatment. The Canadian experience of HIV and aging, though. is not typical of the rest of the world. 

And then, driving home that last statement, keynote speaker David Soomarie (Programme Coordinator, Community Action Resource [CARe], Trinidad and Tobago) took the floor to speak of his experience and the state of the Caribbean HIV response and the message was a stark one: “I don't know anybody who has HIV or is an HIV advocate who is over 50, so what do these concepts of HIV and aging mean to me?”  We heard of a clinic that regularly had to turn people away for testing because they only had 50 test tubes. We heard of stigma, shame and probable violence all providing barriers to testing and treatment: And we also heard that David had resigned his position at CARe just days before: “I'm 42 now. Before I blink twice I'll be 50. I don't know what that means. I must save myself now. I can't save anyone else.” 

You will hear more from this eloquent survivor in an interview with's John McCullagh shortly. 

Next up was a panel  setting the scene with “Who, Where and How are People Aging with HIV?”, While the Public Health Agency of Canada (PHAC) data was, as is often the case, annoyingly incomplete, it does provide a useful view of where new infections are occurring. Don’t be fooled into thinking that HIV is a young persons' disease; men over 50 were over three times more likely to contract HIV than women, with men who have sex with men (MSM) comprising 36.2% of that age group.          

Though the numbers are of interest, there is some disappointment that there is no breakdown of new infections beyond “over 50”, making these numbers more useful from a prevention standpoint than a support provision one. It would in fact be more useful to have age breakdowns for those living with HIV but these are not available in Canada. We understand that is being worked on. 

“Numbers drive legislators!” added lively US speaker Stephen Karpiak. “Take these numbers to your legislators.” His organization, ACRIA, started the first prevention campaign specifically for those over 50 and is an authority on HIV and aging. He said that there is no evidence to support the idea that people living with HIV age at an accelerated rate. Rather, he made the case that the various comorbidities we suffer are much more common than in the general population. There is uncertainty though whether these  are due to treatment impacts, HIV progression or complicating factors more common in people living with HIV like smoking, stress, low socio-economic position, use of opiates, to name some. All of these may in fact work together to “accentuate” the aging response. And there remains the question of whether any symptoms one might have are a product of the foregoing factors, or of aging itself. There is, it seems, a lot we do not know. 

Chaneesa Rose Ryan (Health Project Coordinator, Pauktuutit [Inuit Women's  Organization of Canada]) had been scheduled to speak but had to cancel due to illness so Carrielyn Lund, a director of REALIZE,  filled in and very movingly fleshed out a picture of the Northern communities and of what brought her to AIDS work, the fear, stigma and isolation waiting for people living with HIV. 

Next was a panel, moderated by long-time activist Ron Rosenes (left), titled “What is important about aging to people living with HIV?” The panel was a diverse and highly engaged group of five people living in different parts of the country, who have lived with HIV long-term.They were asked to share their hopes, worries and thoughts, including how to cope, based on their journey so far. The answers to the “coping” question were as diverse as the group, running the gamut from non disclosure and isolating, family relationships, immersion in meaningful work and pets.

One thing they all had in common was a high degree of engagement with their HIV work.

Finally the workshop tackled the hot topic, “Clinical Guidelines for HIV and Aging: Do We Need Them?” in the form of a debate between (pro) Dr. Marianne Harris, MD, CCFP and (con) Dr. Julian Falutz, MD FRCP. What we do know is that people living with HIV tend to carry a greater burden of chronic illness than their HIV-negative peers across the life course. But how can health care manage that situation in a responsive way, encompassing research driven best practices?  Could clinical guidelines for the care, treatment and support of older adults living with HIV reduce current inequalities? It’s trickier than I thought.

Certainly the concept seems hard to argue with. However the challenge is that the data is often too thin (yet) to make solid recommendations. But it was an interesting and thoughtful way to end the day. 

Kudos to REALIZE for pulling this off. For those new to the subject and those who may have thought they had heard it all, it was an energizing reminder of how far we have come, but more importantly how far we have to go. In this era of an aging and growing HIV population we need much more of events like this.