Today, most young gay men living in Canada have not experienced the trauma of the early years of the HIV epidemic. Through advances in treatment and technology, HIV is now seen as a more of a manageable chronic disease. Within this context, the message of prevention and treatment is perhaps even more critical.
According to research from the BC Centre for Excellence in HIV/AIDS’ Momentum Study – a sexual health study of gay, bisexual and other men who have sex with men in Greater Vancouver – nearly one in four gay men in Vancouver are HIV-positive. The good news: Over 80% of men living with HIV are diagnosed, on treatment and virally suppressed. Within BC, expanding treatment universally to those living with HIV, through the implementation of Treatment as Prevention¨, has resulted in a decline in HIV morbidity, mortality and transmission.
Jonathan Postnikoff is the Treatment Outreach Coordinator at Positive Living Society of BC, and one of those working to get the most pertinent information on HIV prevention and treatment to his peers. Through both his work and his own experience as a gay man living with HIV, Postnikoff has gained insight into the barriers and stigma people living with HIV continue to face within communities in BC and elsewhere. He also works as a peer research assistant and provides trainings on HIV treatment, such as through the BC-CfE’s Clinical Education Program and the HIV Continuum of Care Collaborative. In these roles, Postnikoff helps others through their own experiences living with HIV and provides health care providers with a patient-centred perspective.
Here he shares his story and his insights.
BC-CfE: What support did you encounter in the health care community after receiving your diagnosis?
Jonathan Postnikoff: I really didn’t know what was in the community when I was diagnosed, or even what support around HIV looked like, I literally thought my life was over. It was a very dark time that took a few years to get over. I had a serendipitous connection to one of the staff at Positive Living BC, a person who helped me find a doctor and connect me to care. I needed someone who would listen to me and go at my own pace. Overall, what encouraged me was the way I got to do things at my own speed, along with the support of a doctor who cared and a friend who understood what I was going through. It was this exact situation that encouraged me to help others who might be at that place I was years ago.
BC-CfE: As both a person living with HIV and as Treatment Outreach Coordinator at Positive Living BC, what do you see as barriers in access to treatment?
JP: The stigma around HIV is stifling, profoundly impacting people beyond accessing treatment, and I would say it is the number one reason 25% of people infected in Canada are unaware of their status. People living with HIV are often victimized in various ways and are told that they are not deserving of the same rights as others. This happens systemically through the criminalization of HIV non-disclosure, the war on drugs, and a lack of appropriate services. But it also takes place on a personal level via unhealthy relationships that remain focused on controlling the person living with HIV, often by one’s children, spouse, family, friends, or health practitioners. We hear horror stories of people being refused services or being shamed in public settings because of their status. These stories explain why some people living with HIV do not access treatment, both medically and holistically. This is not to say that things haven’t gotten better. If we look at the statistics, here in BC, we are much farther along than other regions. But we still have a ways to go to reach the 90-90-90 Targets.
BC-CfE: When you do education initiatives what are the main messages that you share? Where do you mainly do education?
JP: When speaking to health professionals who are in training or practicing, my number one message is that people living with HIV are still human and deserve the same rights and respect as everyone else. The other key message I provide is that the patient can provide valuable information to make the practitioner’s job easier.
When I talk to people living with HIV in various activities, I am often taking technical, high-level information and putting into a format that is easy to understand. I am always trying to find innovative ways to relay the information in such a way that individuals are able to apply it to their own lives.
I do educational activities wherever people request them, at all levels of literacy and education levels. Primarily, I aim to offer knowledge to groups of people living with HIV through various media, such as community forum presentations; magazine articles; knowledge translation and dissemination activities; conference presentations; and in-house trainings for health care professionals, students and others.
Having the ability to impact the education of future health care providers leads me to believe we are making a real difference in the way health care is delivered to individuals living with HIV.I try to provide a low-barrier setting where people can ask any question they like without fear of insulting or stigmatizing anyone.
BC-CfE: Do you still see stigma against HIV? How does it present itself?
JP: HIV stigma is still extremely prevalent in our society. While I like to believe things have gotten a little better we still have so much work to do.Stigma presents itself in many ways at both the inter- and intra-personal levels. Sometimes the person who is the meanest to us is the voice in our heads, or the person we see when we look in the mirror. It is the self-loathing and shame that often goes along with an HIV diagnosis, which immobilizes people and is exacerbated by experiences that perpetuate such shame. It can be as simple as hearing something on TV, or in passing, where HIV is expressed in a pejorative manner. It can look like not wanting to take your meds at dinner because you are afraid others might see you. This can cause you to miss doses, or, like it did for me, stop engaging in care because you’re too afraid to openly admit you are living with HIV.
The fact that people still lose their jobs, are refused employment, kicked out of their place of residence, go to prison, get beat up, are shunned from their families, or are killed for having a virus that anybody can get, proves to me stigma is still a very harsh reality. It must also be said that there are many other ways people are stigmatized because of their status that, as a privileged white gay man in Vancouver, I wouldn’t be able to fathom. My heart goes out to those individuals.
BC-CfE: Do you see anything unique about the work being done in the field of HIV within BC?
JP: There are too many things to list about the amazing work going on in BC. There is enormous commitment, compassion and dedication of individuals from various backgrounds and institutions. I truly believe the interdisciplinary relationship of the HIV movement in BC makes us unique among other regions. We see patient involvement in ways other groups only dream of, and there are mutual learning relationships among the health care, academic and community systems all across BC.There are still some key challenges we have yet to overcome, such as increasing our ability to cross the drastic geographical divides of our province; adapting our systems to better meet needs of providers and patients; and getting a wider variety of individuals on board in our current efforts. The lessons we have learned in the past 30 years are not specific to HIV and I believe could help other groups mobilize and work together.
BC-CfE: How can the community work towards ending AIDS by 2030 to achieve the 90-90-90 Target established by UNAIDS and the United Nations?
JP: Here I guess it depends on what the definition of âcommunityâ is. For my answer âcommunityâ represents the larger HIV sector – not just people living with HIV – but includes doctors, nurses, social workers, pharmacists, and every other group with a vested interest in seeing the end of this epidemic. Collaboration is key: No one arm of this movement can achieve ending it on their own. It is imperative to keep an open mind about innovative ways to reach different groups, to support leaders in their respective fields to challenge the status quo, and not to sit idly by and accept things as they are now. One of the ways HIV is exceptional is its ability to mobilize groups and individuals to improve, to look beyond personal gain and strive to better the âcommunityâ. Finally, I would say that we have the tools to end AIDS by 2030, and now we must get those tools into the hands of those who need them most.