The growing invisible majority and what do people aging with HIV really need?
Bob Leahy talks to Realize’s Kate Murzin about our collective response to HIV and aging – what’s working, what’s not and why that’s important to know
Bob Leahy: Tell me about your job, Kate.
Kate Murzin: I’m the Health Programs Specialist at Realize,, formerly the Canadian Working Group on HIV and Rehabilitation, or CWGHR. My role here is focused entirely on HIV and older adults –on prevention and what makes people vulnerable to HIV who are 50 and older, but also on the lives of people who are living with HIV and aging with HIV who are older than 50.
Kate, there is actually a lot of discourse about HIV and aging but I have to admit it’s not altogether working for me. I wonder if you know why some people feel left out of the conversation a little bit?
My sense is that a lot of what gets talked about in the realm of HIV and aging are physical comorbidities - and the research into those is very important, and how we address those clinically - but I think that sometimes makes people who are aging with HIV feel more like subjects of investigation. I think what people with HIV want to think about is their sexual health, their relationships, their family, their housing, their jobs, their finances – and that’s often not where the focus is.
Yes, I think it’s fair to say that with any discourse people tend to focus on the piece that concerns them, and in this case, where they are on the aging continuum. I guess the position I would take is that there is a lot of discussion on the aging process and less on the issues of the old, or aged. In other words, there is a lot about the journey and not so much on the destination. What would you say to that?
I think you are right and part of me wants to say that’s been a necessity in terms of opening the door to even having the conversation. For so long we have looked at that older age group, 50-plus, and everyone in that group has been lumped together. In order to start to talk about older people and aging, we have started at the lowest end of that cohort, talking about the transition from middle age into aging. But you are right; there are a substantial number of people living with HIV who are already in their 60s and 70s who don’t have time to wait for us to catch up.
That’s kind of my issue. Looking at the numbers we know that roughly 50% of people living with HIV are 50 and over and very soon that will be 70% according to projections in the US - and very soon we will have a very large group aged over 70. It’s inevitable. So let’s talk a little about that cohort and the needs of people over 70. Are we ready for them? The UK seems to be explicitly saying “no”. What would you say to that?
If I had to give a yes or no answer I would say “no”. I would say there are a lot of gaps about what we even know about the people who are 70 and older, or who will be in the next few years. For example, we are basing all our assumptions about who those people are on data that doesn’t come from Canada. We have no prevalence data by age in Canada that allows us to take a more proactive approach to planning for the programs and services that are needed as people who are 60 now reach 70. We don’t know how many those people are and who they are and what their needs are.
That in itself is a constant irritant, Kate for people, let’s say seniors – people over 65 – that is a bit alarming and puts us in the category of a minority, soon to be a majority, for whom we don’t even collect numbers on.
It is a constant irritant. You can’t really advocate for something unless you can prove there is a need and without numbers that makes things very difficult.
So talk about the fact that in Canada we have prevalence data (how many people living with HIV) only for people over 50, nothing more detailed.
In terms of incidence (new infections) the people over 50 are lumped together. That’s starting to change. The Ontario data is being disaggregated into 50-54, 55-59, 60-64,65-70 and over 70. But at the federal level, there is still some reluctance to disaggregate that data and I’m not exactly sure why that is. In terms of the prevalence data it’s mostly done through estimation and nobody is willing to estimate how many people living with HIV fall within any age category.
What is the impact then of not having those numbers?
If we don’t have numbers of how many are in any age bracket we can’t tell how soon they are going to reach a targeted age that we are interested in knowing about, one where certain clinical and social observations could become more relevant. For example if we don’t know how many people right now are in their 50s and 60s we can’t plan ahead for ten years from now where those folks many need better access to things like home care.
So there are real practical implications of not having the data that ultimately play out in terms of lack of programs and services for that age group.
That’s a serious situation. Is there advocacy around trying to get those numbers?
There is. Realize is the secretariat for the National Coordinating Committee on HIV and Aging referred to as the NCC - which is a diverse group of stakeholders from across Canada who have an interest in aging-related issues for people living with HIV. We have a research working group that has done some work with both provincial and national epidemiologists trying to advocate for segmentation of the incidence data in the 50-plus age group and segmentation of prevalence data by age. So far we have had some reluctance at the federal level though there are some pilot studies at the provincial level.
Is there any push from the community for this kind of work?
I would say it’s mostly been taken up by the National Coordinating Committee - there are people living with HIV and aging with HIV on that committee - but as far as I know the only advocacy on HIV and aging of any sort in Canada is coming from the NCC.
I see. But as to why, it may be that because we go to workshops on aging and neuro-cognitive impairment and so on people think that the file is sort of taken care of, that we are paying adequate attention to aging issues.
It’s interesting that you say that. I think a lot of stakeholders do figure the topic of aging into conferences, etc., but if you ask most people who are older they are feeling not enough attention is being paid to the subject. I think in some ways long term survivors feel excluded, a bit lost in the era of 90-90-90. We sort of stop thinking about what happens after people are virally suppressed and living long term, not recognizing that with long term survivorship and with aging come a host of other needs that aren’t well captured within that cascade.
I think you are right. Now you mentioned early on, Kate, you are only one person in Canada working specifically on this file. Is that enough? I mean in other situations we are quite good at identifying the needs of specific populations and responding to them.
I really want to acknowledge that I’m not the only one doing this work, I’m just the only one doing it full time! I have way more work than I can handle, way more issues than I can possibly address as one person, but my work is definitely supported by the other members of the NCC. When you think about the priority populations that are often considered in the response to HIV, many times why those have been designated as priority populations is because of their vulnerability to HIV. What’s evident is that older adults are making up a larger and larger proportion of those newly diagnosed with HIV, so in that respect they probably deserve their own priority population category. But people who are aging with HIV also straddle all the other categories – they are women, they are gay men, they are people who use substances – and I don’t think many of those people looking at those populations are looking specifically at the aging considerations within those populations. Just as youth straddles all those groups, maybe the aging or aged need separate attention.
Right. I understand your group has done an environmental scan to see what exactly is out there in terms of programs centred around aging?
Yes, our environmental scan was headed up by Charles Furlotte at McMaster University, an advisory committee, and the NCC. We had 92 responses. Of those we were able to identify 21 programs across Canada that were specifically related to the needs of people aging with HIV.
In some ways that’s quite good but it’s a glass half full, glass half empty kind of thing.
Right. But we did also ask participants whether HIV and aging was within the consciousness of their organization and many that didn’t have programs were starting to incorporate a focus on the aging population into their strategic planning, so that is good.
What about a national needs assessment. It’s like a building block. Has one been done?
No. As you can imagine there are costs associated with a needs assessment because a lot of people who are aging aren’t necessarily coming out regularly to their local AIDS service organizations so we need to go about recruitment to make sure we reach people across the country, including in rural areas, people who are challenged by mobility or are not connected. We have applied for research funding but not been able to get funding. There is huge competition in the area of research funding.
Hmmm. Some people are starting to use the term “ageism” because of the absence of older voices in the room. I won’t say “stigmatization” but . . . one of the factors is that as people get older they disappear from the ranks of activism, from the ranks of clients. So I think one has to be inventive in finding those people. It’s a disappearing community but we are still out there. People retire but it doesn’t mean their needs retire and we can’t stop listening to them to find out what their needs are.
Exactly. I think what you are describing is something I refer to as “invisibility”. If I could say anything though about people with HIV who are aging and their needs, I want to put it in a broader context. People aging with HIV have so many of the same needs as older adults who aren’t living with HIV. This is not an area our society and our decision makers and our programs are well set up to serve. We don’t have a national seniors’ strategy. Even in the draft strategy that has been put forward we don’t have any mention of HIV or even of sexual health, which I think is very problematic. We make an artificial separation when we talk about chronic disease management and management of HIV and other types of chronic disease. There are exceptional issues with HIV – stigma being one of the biggest, and higher levels of comorbidity - but there is no reason why our strategies to deal with chronic disease can’t encompass and shouldn’t explicitly mention the needs of people living with HIV.
Talk about the needs of people living in long term care as we often focus on those.
I think we need to pay attention to home care. Most people don’t end up in long term care. I’m not saying the efforts to improve long term care are in vain – there is a lot that needs to be done, especially in making those environments welcoming to people who are aging with HIV. But in 2011 only about 8% of people over the age of 65 were in long term care. I think people prefer to have support in their homes and maintain their independence but there is a call for wrap-around services for people with HIV so that they have the support that they need to stay in their own environment. I think too the HIV sector needs to be more active in advocating for seniors rights, much as we advocate for HIV and aging.
I think though that older people with HIV sense that they are different, sense they have particular needs, sense that if they were to go into long term care there would be challenges. I think we need to probe those issues and that’s what a needs assessment is about.
Absolutely. I just wanted to clarify that I’m not arguing that in any shape or form, any seniors’ issues are being well handled.
Right. I’m just wondering Kate . . this conversation has been pretty rich – and I want to thank you for that - and we have covered a lot of ground but not the issue of vulnerability of (HIV-negative) seniors to HIV infection. Should we go into that here?
I think we have covered a lot. If you want to come back to that another day . . ,
Yes. We have tended to concentrate on the gaps rather than the sector’s accomplishments, so I apologize for that, but you are very good, Kate.. Thank you so much for talking to PositiveLite.com and let’s continue this conversation another day.