How to live well with HIV
John McCullagh talks with Robin Rhodes of ACT about his agency’s monthly educational workshops for people living with HIV - workshops that are now webcast across Canada and around the world.
For those of us who work or volunteer in the HIV sector, there are often opportunities to attend workshops and conferences about new developments in HIV prevention and treatment and, for those of us living with HIV, on managing our heath in all of its dimensions - physical, emotional and spiritual. For most other HIVers though, such opportunities are not as readily available, due to cost, time, location or inclination.
This is where the Community Health Forums put on by the AIDS Committee of Toronto (ACT) come in. Held seven times a year, these free workshops are accessible not only to HIVers living in the Toronto region but also, because they are webcast, to those living across the country and around the world.
In order to learn more about these forums, I went to ACT a couple of weeks ago to talk with the program’s coordinator, Robin Rhodes. This charming man, who was born and grew up in Britain, has worked with people living with HIV and AIDS since the beginning of the epidemic. A staff member of ACT for 13 years, Robin oversees a variety of client-centred programs at that organization. Here’s our conversation.
John McCullagh: Welcome, Robin, to PositiveLite.com. I’d like to start by asking you what exactly are ACT’s Community Health Forums?
Robin Rhodes: They’re really open workshops for anybody that’s living with HIV to help them to better understand treatment issues and self-care, from a holistic point of view. It’s an educational opportunity, a chance for people to sit, listen, ask questions and learn.
John: In terms of those who attend, are they primarily people living with HIV or can anyone come?
Robin: We advertise it as a forum for people living with HIV but people don’t necessarily have to be a client of ACT or of any other ASO.
John: What’s the experience like, attending one of the forums?
Robin: They run between six and nine at night and we always offer a free buffet meal to start because it’s a long evening. Another reason to have food available is because some people need to take their medication with food.
The actual presentations themselves start at seven o’clock. There are usually two speakers. We try to find a specialist, a professional, whatever it may be, who’s an expert in the specific topic being presented and complement that with the second speaker - or first speaker depending on which - who’s somebody living with HIV who’s familiar with or has lived experience of the topic under discussion. Sometimes, both speakers may be people living with HIV. But that’s not necessarily the criterion. The criterion is to offer an exemplary and high-standard presentation around the topic of the evening. We also build in time for questions from those attending.
John: Do people just come up and ask questions or do they hand them to you in writing?
Robin: Well, more often than not it’s direct from the floor. But if someone is more comfortable in writing their question down and handing it to me to read, that’s okay.
John: You hold the forums in an hotel, not at ACT. Why is that?
Robin: Because it’s a neutral environment. It’s not a space associated with the gay or HIV communities or anything else. Some of those who attend may not be out about their status or not comfortable in coming into an ASO and/or not comfortable asking their doctor questions. So it’s a neutral space that’s accessible to anyone from any walk of life, from any diversity, any background, cultural or otherwise. There’s no registration required either, again to protect anonymity.
John: Robin, give me some sense of some of the topics that you’ve presented in the past and also your plans for this upcoming year.
Robin: So we have seven forums a year, from September to March. The topics themselves are pretty broad-based. We try and cover both pure medicine as well as taking a more holistic approach. So for instance, we’ve covered HIV and healthy relationships, we’ve presented on addiction issues, on healthy sexuality (whether with single or multiple partners), the theory of practice of neurocognitive health, HIV drug interactions, HIV drug toxicities, HIV stigma and discrimination, hepatitis A, B and C, co-infection, transmission and treatment, PEP and PrEP.
John: That’s a very broad spectrum of topics.
Robin: Yes, it’s a very rich tapestry.
John: And for this coming year, starting in September?
Robin: Well John, this coming year we’re broadening the net, as they say. We’re looking into new insights into HIV management strategies for a cure, and will be presenting on the new Canadian HIV pregnancy planning guidelines. We’re going to look in depth at HIV and mental health, the new thinking and the new strategies around mental illness, about optimizing mental health and how that improves compliance with HIV medication and reduces the risk in other activities. And because we’ve just had the world AIDS conference in Washington, we’ll be providing a complete overview of that event and everything it entailed.
John: That’ll be interesting.
Robin: Absolutely. And then we’re going to talk about HIV among newcomers to Canada, about cultural diversity issues, getting into the health care system and navigating the system. We’ll also be presenting on the resiliences and challenges of sexually transmitted and opportunistic infections, new and existing STIs, overcoming sexual health challenges. There’s also going to be a session about anal cancer and dysplasia, which we’re noticing is getting more and more prevalent among people living with HIV. And then, finally in this particular series, we’re going to be talking about HIV and fatigue and hormone issues for both men and women and the use of supplements and testosterone and looking at energy levels and how best to manage these.
John: Robin, a wealth of topics there. How do you decide what to present?
Robin: Well, John, we’re very fortunate in having an amazing advisory committee comprising members of the community, staff and members of ASOs and also the supporting pharmaceutical companies. So we have a wealth of people who provide their input.
Then at the end of each forum we have an evaluation form on which we ask people what topic they would like to see presented in the future. For our annual series of seven monthly forums, we usually take four of the topics from the evaluation forms while the other three are decided by the advisory committee through the knowledge that they have both professionally and through their work in the communities of areas that people living with HIV may not necessarily be aware of and which we think it would be helpful if they did.
John: Do the pharmaceutical companies dictate what topics are to be presented?
Robin: Not at all. They are there as partners to the advisory committee and as sponsors of the forums. They can offer suggestions and they do. They do tend to know what’s coming down the pipeline in terms of research and they can be a great help to me in finding the right speakers.
John: Is that where the funding for the forums comes from, the drug companies?
Robin: They do support us, yes, but it’s not the overall funding source by any means. We receive support from a pharmacy as well. And ACT contributes from its own budget. So funding is broad-based.
John: Now you have a very exciting new development this year, as I understand it, in that you’re going to be televising the forums over the internet.
Robin: Opening up the forums to participants who, for whatever reason, cannot attend in person has been a dream of mine for a long time. The forums have grown from very small and humble beginnings, with eight or ten or fifteen participants.
John: What, ten or 14 years ago?
Robin: Yes, and now we get around 50 attending. But it’s always been my desire to share beyond our city the opportunity for learning that people in centres of HIV excellence such as Toronto, Montréal and Vancouver are able to access. So I spoke with Mark Fisher at the OHTN, who’s the director of IT there, and we tested different webcasting formats. We found one that appeared suitable and, as a result, last year we started webcasting an audio feed of the forums along with showing the powerpoint presentations. There were a few wrinkles at first but, generally speaking, from the feedback we received, it proved to be successful.
Several people said that, while it was wonderful to hear the speakers and to see the powerpoint, would it be possible to see the presenters as well? So I went back to Mark and we looked at this again and we think we’ve come up with the remedy. We’ve done some testing and it seems to be working. So the new exciting piece is that, in this coming series, people not physically at the forum will be able to see the presenters as well. Albeit in a small box at the side, because we still need to present the powerpoint slides.
John: That’s a wonderful, exciting addition.
Robin: Yes, it is. And people viewing via the internet will also be able to anonymously email questions for the presenters to answer. Obviously, we won’t be able to take every question, but it’s another way of reaching out so that people in other areas will feel as though they’re participating in the event.
John: And those webcasts are not only going to be presented in real time but will also be recorded for later viewing.
Robin: Absolutely, it’s recorded and then within 24 hours its on a URL using exactly the same link on to the archives so people in different time zones across Canada and around the world can watch any of the previous forums and indeed the one from the night before.
John: So, Robin, what’s some of the feedback that you’ve received about the forums both from those who attended locally and those who logged in via the internet?
Robin: Well, John, for example, to quote from some of the people who filled out the evaluation forms we pass out at the end of each forum:
Personally, it was all really relevant to me and I can begin to put my life back together again.
The Q and A was really helpful; the speakers were fantastic and presented in a way I really understood.
These meetings always make a difference to me and better enable me to talk with my doctor.
My health and aging were what I had to know about - scary but very good.
And then web feedback:
I viewed with my partner, thanks it was great.
At last we were able to learn what you people in Toronto have.
I heard about this from my agency support group; we all watched, thank you.
Our service users are really enjoying this valuable opportunity to gain knowledge.
John: At the end of the day, this is the kind of feedback all of us who present or write on issues concerning HIV hope to hear. Are there any challenges that remain?
Robin: There are always challenges, John. They include keeping the topics fresh, finding the right speakers and scheduling them around their availability. Another challenge is finding a person living with HIV who’s comfortable speaking about the topic at hand, because, as I mentioned at the beginning, we always try to have one of the two speakers be a PHA who has knowledge of and/or lived experience of the topic under discussion.
John: Any final thoughts to share with PositiveLite.com readers, Robin?
Robin: My passion - and I came into this work many, many years ago, John, and I run several other programs at ACT besides the community health forums - what drives me is that I’m constantly moved by the strength, the knowledge, the tenacity, the wisdom of people living with HIV. They are who motivate me to do to do the job I do. All I hope is that someone has benefitted in some small way from the work I do.
John: Well, as an HIVer and as a regular participant at the community health forums, I know that through them I’ve learned a lot about issues that are important to me and, as a result, am better able to manage the challenges of living with HIV.
Robin: Thank you, John, I appreciate knowing that.
This interview has been edited and condensed.
ACT’s 2012-2013 series of Community Heath Forums will be held on September 12, October 10, November 14, December 5, January 9, February 13 and March 13. Presentations last two hours, starting at 7:00 pm Eastern Time.
You can log in at the above times to www.actoronto.org/forum to view the forums live. The webcasts will be archived at the same link within 24 hours following each forum. At that link, you can also find information about the next forum in the series and watch previous forums that have been webcast.