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Views From the Front Lines: STOP HIV/AIDS

Interviews by Debbie Koenig

Spring 2012

We asked three people to share their views on British Columbia's innovative STOP HIV/AIDS Project:


Chris Buchner

The STOP HIV/AIDS pilot project has been running since 2009/2010. Looking back at the past two years, what would you say are some of the key lessons learned?

Although we were doing many things very well in terms of HIV testing, linkage to care, treatment and support, we've learned that there were a number of significant gaps. We've used STOP as an opportunity to purposefully reflect, with a broad range of partners and stakeholders, on how we were doing given the current state of the epidemic in BC and to identify innovative ways to address some of the gaps.

In the case of HIV testing, we were using testing approaches and policies that hadn't been significantly revised since the early days of the epidemic. We were essentially testing people based on assumptions about their level of risk. This approach is flawed because it assumes that individuals at risk know and understand their risk and that clinicians can accurately and consistently identify people at risk. Several studies, such as Vancouver's ManCount study, demonstrated that even among populations with the highest incidence and prevalence of HIV, there were significant gaps in their ability to identify their own risk and in the ability of clinicians to identify risk.

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We also learned that approximately 60% of people diagnosed in Vancouver had CD4 counts below 500. This means that they were diagnosed later than the point at which they should have already started treatment, according to current treatment guidelines. Of those, approximately 40% of people were being diagnosed with CD4 counts of 350 or lower; and roughly 20%, with a CD4 count below 200. Clearly, a large proportion of people were being identified as HIV-positive too late for them as individuals to have the best health outcome. And, from a population perspective, we weren't doing all we could to prevent transmission.

The current method of targeting specific populations meant we were missing many people. As part of STOP, we've implemented an approach that doesn't replace targeted HIV testing (there will always be a need for testing that identifies a specific population, uses its language and has a high degree of cultural competency) but complements that approach with routine testing. We believe that through using both routine and targeted testing approaches at once, we might have a greater chance of diagnosing people closer to the time of their infection.

Since fall 2011, the four major acute care hospitals in Vancouver offer an HIV test to all patients upon admission. In just a few short months, we've already identified a positivity rate of approximately 0.5% and been able to provide a diagnosis to people who would have been very unlikely to have been diagnosed by any other means of HIV testing.

To your knowledge, what has the impact of STOP been on services for people living with and at risk for HIV? How has it changed or improved the patient experience?

We're trying to measure aspects of the patient experience in a couple of ways:

  1. At six-month intervals, we're running a community engagement process. We're doing interviews, focus groups and online surveys with HIV-negative people (both members of risk groups and members of the so-called "general population"), HIV-positive people and service providers. These community engagement processes have complemented the evidence and best practice literature reviews that we've done to identify strategies that would be most relevant and appropriate for the various populations involved but have also helped us track and understand the impact of the strategies.
  2. We have developed a set of social determinants of health indicators, which complement our more clinical or epidemiological targets for the project. These are indicators related to housing, socioeconomic factors and others.

We're hearing that, in many cases, the patient experience is improving. People are being linked to care more quickly following diagnosis and have more comprehensive supports and services.

One of the initiatives we've received a lot of positive feedback about is our peer navigator services provided by Positive Living BC. The peer navigators, who are HIV-positive and have been provided with training and skills, are matched and made available to people who have been newly diagnosed. The peer navigator's role is to guide people through standardized information at their own pace and help them make the system work better for them. The clinicians also really like this because the peer navigators are able to have conversations that some clinicians aren't comfortable having or aren't able to have.

We've also seen positive outcomes on a continuum of housing support services, which we implemented as part of STOP. These services have helped retain people in care, stay on treatment, suppress viral loads ... but also, their overall health and well-being are going to improve with improved stable housing.

STOP has captured media attention nationally and internationally, and it has sparked controversy. While the strategy has been hailed as groundbreaking, some have also expressed concern that it may threaten people's privacy and autonomy. How do you respond to these concerns?

I think that some of the initial concern regarding privacy and autonomy resulted from fears that STOP would mean mandatory testing and treatment. As folks realized that all activities would be conducted according to current policies and guidelines, and building upon the recommendations of HIV-positive people and others, I think that many of those concerns have been addressed. We continue to encounter people who are relieved to learn that routine HIV testing means the routine offer of an HIV test with the requirement of informed consent.

Sam Milligan

The STOP HIV/AIDS pilot project has been running since 2009/2010. Looking back at the past two years, what would you say are some of the key lessons learned?

Northern Health covers a vast geographical area with a great diversity of people and wide range of services. When we built our STOP HIV team, we had to take it all into consideration. Outside of Vancouver, STOP was focused primarily on Prince George but in the back of our minds, we always had to build for all the communities that are part of Northern Health. We wanted to eventually move the programs we designed for Prince George into those other communities as well.

[As part of the STOP team,] people from every discipline you can imagine sat around the table and it created one big communication mishap. In my opinion, the biggest lesson learned is that developing and delivering a comprehensive, effective and efficient HIV program is very difficult when everyone comes with their own ideas and language of how to achieve those goals. So we had to break down those barriers that existed between sectors and agencies. We developed better language, communication tools and working relationships over the last two years.

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People might assume that what works in Vancouver is going to work in the North too. That's not at all the case. The populations we need to focus on here are not the same populations Vancouver focuses on. We are unique in terms of not only the demographics of our population but also the geographical challenges that the North represents.

For example, our population living with HIV is predominantly Aboriginal, approximately 60% women. The populations we work with are very transient. So when they return to their reserve or home communities, we usually lose track of them. This often results in people not having primary care follow-up. The communication between urban care, rural care and on-reserve care is not where it needs to be. Also, for much of our population, alcohol is a driving force in their lives.

To your knowledge, what has the impact of STOP been on services for people living with and at risk for HIV? How has it changed or improved the patient experience?

Additional staff have now been hired throughout Prince George to provide services including an HIV-focused pharmacist who's very mobile. In addition, both our pharmacist and HIV specialist now have access to Telehealth so they can provide services to clients living in surrounding communities.

Are the increased services making a significant impact yet? I don't think so because we're still in the early stages -- we still need to figure out how to improve access for existing clients and potential clients. I believe we have laid the groundwork to truly improve the patient experience, but a lot of hard work remains.

We are in the process of implementing a Medication Adherence Support Program (MASP) for people living with HIV to support those on treatment. The program will provide clients support seven days a week from a holistic care perspective that acknowledges people's mental, spiritual, physical and emotional needs. The program will provide access to antiretrovirals up to 12 hours a day, work with clients to remain engaged with healthcare, to regain independence, achieve stable housing, build self-esteem, etc. ... with the overall goal of helping clients get their life back on track. Each client will have a care plan tailored to their individual needs, to help them meet their desired goals.

Northern Health has hired a communication officer specifically focused on HIV. She is presently working on an HIV education/awareness campaign that will be promoted to all of Northern Health. Central Interior Native Health Society, which has an Aboriginal Health clinic that serves 62 clients living with HIV has a dedicated HIV nurse who is able to triage clients' as needed.

I don't know that the patients necessarily have an improved experience as a result. I think that stigma still plays a major role and drives individuals accessing HIV services or considering accessing HIV services to be overly hesitant. This can result in people not going for testing or receiving proper healthcare. The marginalization of our Aboriginal population, the continued effects of colonization, alcoholism, injection drug use, mental health, the polices of the federal Conservatives are all key components of life that people struggle with every day ... I don't think that we've made a dent in those at all. These factors are rampant. What I would say has improved is access to services, the flexibility of support (client-specific) and the sustainability of that support.

One of the goals of STOP has been to test and treat groups in Vancouver and Prince George who have been disproportionately affected by the epidemic and groups who face multiple barriers to accessing information and care -- including Aboriginal people, gay men and other men who have sex with men, people with addiction, housing and mental health issues, among others. How successful do you think the project has been at reaching these populations?

I think we've made testing more widely available both in terms of who we test (we now offer an HIV test to anyone who's ever had sex once), where we test, and the type of tests offered. However, I don't think that we've reached a greater percentage of the population yet -- not in Prince George anyway.

In Prince George, we focus on people who use the needle exchange. We need to make more of an effort to provide testing and services to the gay and MSM communities because we have seen rates in those communities start rising again recently but we haven't seen any targeted testing. We don't specifically target women. Yes, all pregnant women are screened but I'm not seeing anything that targets women and those other high-risk groups. I think that that's one of the parts of STOP in Prince George where we may have fallen behind; we are working on this.

Among healthcare professionals, there's more awareness. The new full-time HIV testing nurse will focus exclusively on testing high-risk groups. And with the newly hired communications person dedicated to HIV, I think we'll see testing rates go up. Northern Health has organized a series of testing clinics to test for HIV and other STIs as well as provide HIV education. The groups being focused on are federal and provincial parolees (men only), MSM, women (sex trade workers and newly single women), LGBT and people living with mental illness and addiction.

STOP has captured media attention nationally and internationally, and it has sparked controversy. While the strategy has been hailed as groundbreaking, some have also expressed concern that it may threaten people's privacy and autonomy. How do you respond to these concerns?

I do not see how STOP is threatening people's privacy in any way. Testing is confidential. Yes, it's reportable but reporting occurs within a framework of confidentiality. Treatment is confidential within the doctor's office so we're not asking people to tell the world they have HIV. We're looking to inform people and we're looking for those people who are living with HIV and don't know it. So we're essentially trying to protect people and protect future generations. I really don't see questions of privacy and autonomy as issues at all. I have never heard a single person voice this concern. We talk every day about maintaining privacy and confidentiality, and not once have I heard people say that STOP is compromising people's privacy.

Vanessa West

The STOP HIV/AIDS pilot project has been running since 2009/2010. Looking back at the past two years, what would you say are some of the key lessons learned?

One of the key lessons learned by STOP participants in Prince George is the need to work more collaboratively in our service delivery approach Although we had already been working quite well together beforehand, we've learned to work more collaboratively, to provide services that are more integrated and better meet the needs of our clients. When we find a gap in our services, we now ask, "How can we work together to fill it, using not solely a medical model and not solely a social model but a combination of the two?"

Initially, we were all speaking different languages. Trying to find common ground was difficult but we worked through that. We're collaborating and figuring out ways to discuss these issues because they're all intertwined and we have clients who access all of our services. We can't solve the issues in isolation -- our agencies need to use a coordinated approach.

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To your knowledge, what has the impact of STOP been on services for people living with and at risk for HIV? Has it changed or improved the patient experience?

Something unique that we identified within Northern Health is the need for a pharmacist who specializes in HIV. The development of that position has allowed many clients to discuss with the pharmacist their treatment options and talk about side effects: Having that one-on-one contact is very beneficial because clients often don't know what to ask of their doctor. I think that having the pharmacist here is one of the biggest benefits.

Also, there is now a storage of anti-HIV medications here at the Prince George Regional Hospital. Before, when somebody was on treatment there was often a stretch when people didn't have meds. That has now been dealt with -- we now have medications to tie people over until their medications arrive from Vancouver.

We've also identified the value of doing patient journey mapping [a process used to map patients' experiences with the healthcare system and identify areas for improvement]. During open, non-judgemental group discussions, patients who did the journey mapping commented on everything from "this has been my experience with the hospital" to "these are some of the barriers I'm facing on an everyday basis." Participants had the opportunity to talk about their lived experiences and provide feedback to policymakers on how services could be improved. That experience let them know that not only are people listening but there might be an opportunity for change.

Sometimes, we as service providers feel we know what's best for clients but often what we identify as clients' needs aren't what the clients actually want.

One of the goals of STOP has been to test and treat groups in Vancouver and Prince George who have been disproportionately affected by the epidemic and groups who face multiple barriers to accessing information and care -- including gay men and other men who have sex with men (MSM), people with addiction, housing and mental health issues, among others. How successful do you think the project has been at reaching these populations?

I think that before STOP began, we had some success in accessing those populations, particularly Aboriginal people and people who use injection drugs. But we haven't built a very tangible connection to the MSM communities. Positive Living North and other organizations do participate in Pride and the university's gay/straight alliances but it's been difficult to access that target population.

When it comes to testing, anybody in Prince George can go to their doctor, health unit, needle exchange or regular clinics ... so testing is now available but for those in outlying communities, outreach is more problematic. This is something I've said right from the beginning: STOP shouldn't have been piloted in Prince George. We are already quite well resourced. What we really need to look at are those smaller communities where there's a lack of resources, with populations of 15,000 or less. That's where the greatest gaps are. Northern Health is looking at how the testing strategy can be filtered out throughout the entire Northern Health area. What would point-of-care testing look like in smaller communities, like Smithers or Fort St. John?

One of the things that the Northern Aboriginal Task Force looked at is community readiness and community need. There are 65 First Nations in the North. There is definitely a lack of information and a lack of training among First Nations to do HIV care and harm reduction work. Some First Nations are still resistant. There have been efforts to educate some of those smaller communities and reinforce that by doing harm reduction, you're not supporting drug use but you're supporting safe usage among your clients. Regardless of whether the materials are there or not, people will use drugs.

Although STOP is focused on maximizing the number of people who get tested and the number of people with HIV on treatment to lower their risk of transmitting HIV, we are not doing that at the expense of public education. Northern Health still supports agencies such as Positive Living North to ensure that we can continue to go out and provide education to these target populations. You need to reduce the risk of transmission from target populations but you also want the general public to be aware of their risk.

STOP has captured media attention nationally and internationally, and it has sparked controversy. While the strategy has been hailed as groundbreaking, some have also expressed concern that it may threaten people's privacy and autonomy. How do you respond to these concerns?

Right from the start, Positive Living North had concerns regarding a very medical model that was focused on the people accessing treatment in support of less transmission to others. It's not simply about medication and adherence, it's also about supporting the individual. As others have said, it shouldn't be just "seek and treat," it should be "seek, support and treat." That way, the individual's needs are met too. Knowing that there's a wide array of barriers that clients face, support is as important as the medical components.

We haven't really heard our clients raise concerns about privacy and autonomy. When people are looking for a place to live or they're looking for food or they're dealing with addiction issues, that's not their priority.




This article was provided by Canadian AIDS Treatment Information Exchange. It is a part of the publication Prevention in Focus: Spotlight on Programming and Research. You can find this article online by typing this address into your Web browser:
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