I much enjoyed going to Ottawa last week for The Bruce House conference – they tagged it #EnvisionForum - on HIV, rehabilitation and episodic illness. An ambitious program with a welcome focus on aging, an interesting setting (the old Ottawa courthouse) and a hugely committed group of Bruce House staff and volunteers led to an engaging and thoughtful couple of days in our nation’s capital.
Rob Olver has already covered the highlights from his perspective. It’s a good read. So I’m going to hone in on just one presentation and its implications for all of us. Those implications are a bit worrying – I’d argue they are the next big advocacy cause in fact - but judge for yourself. I’m talking about the plight of an aging, underserviced and not well understood aging population of people living with HIV
Before we address the Canada situation though, let’s look elsewhere.
Others are sounding the alarm. Britain’s Terrence Higgins Trust, one of the most respected and progressive AIDS Service Organizations in the world recently published a report called “Uncharted Territory” with the headline “Social care ‘time bomb’ facing aging HIV positive population . . The first generation of older people with HIV are facing poverty, loneliness and discrimination” it says.
A time bomb here too? I’d say yes, one we have yet to truly come to grips with.
Consider this. Alarmingly we have NO IDEA how many HIV-positive people we have over 55, or say over 60 or over 70, thanks to derelict reporting systems courtesy of the Public Health Agency of Canada (PHAC). The absence of statistics, the bread and butter of how we respond to any demographics’ needs, should send a huge red flag when all we track is “people over 50”. That’s sheer folly. Nor have we explored what services, programs, standards of care and responses aging people with HIV require because, unlike other countries, there has been NO needs assessment of the aging Canadian HIV-positive population. It’s thus not surprising that there are embarrassingly scant programs or services, little integration of HIV routine care and age related health care (including geriatrics), scant knowledge on the impact of aging on people with HIV and little visible advocacy around this demographics’ particular needs.
Against this head-spinning background, Kate Murzin, Health Programs Specialist at realize was in the house at Ottawa. Kate is a sweetheart. She knows HIV and aging issues backwards and her presentation, as usual, was wonderful. She called it “HIV and Aging – Beyond the Body, Outside the Box”
Some random observations . .. the most annoying aspect of this and similar presentations (the opening plenary from the excellent Dr. Kelly O’Brien had the same unavoidable flaw) – is that Canadian data collection has just one category for older adults and that’s 50+. As Rob says in his article, data is available in bands of ages 15-19, 20-29, 30-39, 40-49. The next is 50+, This WTF situation is an artefact of the old days when few people with HIV survived 50. That we have had ART, and thus long life expectancy, since 1996 seems to make no difference. We are left with no ability to name how many seniors living with HIV there are in Canada, even though the number is clearly large and growing by the minute. So we have around 50% of people living with HIV in the over 50 age group, or will have soon, yet we know next to nothing about this ever increasing population.
As a member of that population, it’s hard not to take that slight personally. I said so in Ottawa. I used the words “not good enough” after Kelly spoke. I could have used stronger language. In any event people applauded.
Another beef. (Does HIV and aging also equate to increased crankiness? I think I’m proving it so.) The nomenclature “HIV and aging” we hear everywhere implies the focus is on the journey rather than the destination. It fails to recognize the AGED we desperately need to also focus on. In the interests of humanity and common sense we need to recognize the destination that we people living with HIV all are heading to. We need to start talking about the issues of the ELDERLY living with HIV as well as those getting there.
The HIV-positive elderly are I think, emerging in fact as the most marginalized, underserviced and ignored population in our community. We have dropped the ball.
That being said the presentation was great. It’s clear that Kate is our ally; she gets it, and so does Kelly.
Kate’s presentation alerted us to the following
. Older adults are uniquely vulnerable to HIV infection and we are seeing increasing numbers of new infections in the over-50 demographic. More sex education and targeted prevention efforts required?
. The over 50 age group is far from homogenous – it includes some long term survivors (a term not well defined), some more recently diagnosed - and they have different physical and emotional issues. And if you are both a long term survivor and over-50 you tend to have more complications, more comorbidities.
. People over 50 who are HIV-positive have medical and practical needs that set them apart from the general population. (I for one have seen no change in the standard of care I receive as I’ve moved from middle age to….well…older. Yet one clinic has more than 50% of its patients over 50, with the need for chronic disease management and the onset of geriatric issues becoming particularly important.) HIV care has to adapt.
. Scans of Canadian agencies looking for services specifically aimed at aging poz adults revealed 21 unique programs, but the majority of agencies surveyed (75%) had nothing to recognize that their clientele has aged. And in a tight funding environment where new programming is at a disadvantagem it’s much easier to support the status quo than emerging needs that have little relevance to 90-90-90 and heavily blinkered funders.
. Canada desperately needs to play catch-up on the needs assessment front. Needs assessments of the aging HIV-population have been conducted in the UK and the USA, for example, but not in Canada. Again, it’s a funding issue but also an advocacy issue in the making.
. There has been considerable research on HAND (HIV Associated Neurocognitive Disorder, including in Canada and also an emphasis on brain health and useful brain training exercises to improve cognitive function. We can thank Sean Rourke and the OHTN in Ontario for leading the way. However, on the eternal question of whether declining clinical and mental health markers result from the impact of HIV meds, HIV itself or from just getting older, fuzzy answers remain the norm.
. We have remarkable strengths to draw on that surviving the HIV epidemic has given us. Resilience has emerged as a factor is successful aging; thus many of us remain optimistic and in control of our lives
. Older adults are surprisingly frisky, which begs questions around HIV testing and prevention services for seniors, even including in long term care facilities. (HIV, aging and sex positivity was in fact the subject of a later panel in which yours truly participated which generated frank and sometimes graphic discussion of the sex intimacy and pleasure needs of older adults living with HIV. Yay us!)
Meanwhile in the US this week - see Mark S. King’s post - there is an HIV-positive seniors’ conference. Nothing like that has ever been held in Canada. I want to see one before I retire from this work - and move to uncharted territory.
In the meantime, we need to keep talking.
Watch for an upcoming PositiveLite.com interview with Kate Murzin on aging and activism,.