We spoke to three service providers to find their views and insights on the challenges facing their clients in getting an undetectable viral load:
- Norma Rabbitskin, Senior Health Nurse, Sturgeon Lake First Nation Health Centre, Saskatchewan
- Sem Teklemariam, Women's Support Coordinator, Black Coalition for AIDS Prevention (Black CAP),Toronto, Ontario
- Deanna Macdonald, RN (c), BSN, Interior Health Clinical Care Coordinator -- HIV and Health Outreach Team, Kelowna, British Columbia
What do the HIV-positive people that you work with know about undetectable viral load? Is having an undetectable viral load a priority in their lives?
I am employed as Senior Health Nurse overseeing community health, home and community care and primary care programs in Sturgeon Lake First Nation. Our Health Centre mission is to provide prompt care and provide access to improve health outcomes. Our team works with our community members who have recently been diagnosed or have been living with HIV chronically to get prompt access to care and treatment of their infection. We have all the streams being delivered at the community to provide holistic care. We have been working with building on relationships with individuals, family and community. Our nurses work one on one with clients, providing support and education so they can make an informed decision on the treatment process. Initially they are not aware of what undetectable viral load is. Education and being there to assist them is our main priority. As a team we work with individuals and families providing care and case management. We develop close relationships with them. We don't want to overwhelm them initially with information about treatment or undetectably so, initially, we just provide support. We make subsequent appointments to talk about treatment.
Eventually, after a number of sessions, clients do come to understand what undetectable viral load is. Once they know about it, yes, it is a priority for them. It reinforces their role in managing their own health! They understand the health and prevention benefits of HIV treatment and adherence, and they attend appointments, they take their medication.
For the community that you work with, what are the greatest barriers to having and maintaining an undetectable viral load?
Barriers to maintaining undetectable viral loads for our community members who are already vulnerable are due to a range of health, social and economic inequities. The social determinants of health that impact risks of acquiring HIV, especially injection drug use, include factors such as: poverty, inadequate housing, and lack of education, job training or employment. As well, the impacts of Colonization, unresolved grief from residential schools, and intergenerational trauma, are all reasons why some clients are not able to maintain an undetectable viral load. We come across individuals who don't have a home and are couch surfing. It is certainly challenging for our team to maintain continuum of care for client who are under our case load. Many of our clients are unemployed; living on a fixed income creates other issues -- many can't afford quality, nutritious food in an ongoing way. This is a barrier to health -- everything is interconnected.
Our clients face stigma and discrimination continually. They don't feel safe to tell others about their status. I am grateful we have a team that is caring and committed to providing a safe environment and is responsive to the clients' needs.
Jurisdictional issues are another barrier that impacts our community and other First Nations Peoples in Canada. This is a major barrier to having and maintaining an undetectable viral load. We are lucky in that our community fought to have their health funding be transferred to the community level. Transferred health services is self-determination at its best, and lets the community design a healthcare system that integrates culture and based on the needs of the community and the trends that we are seeing. This is often not the case in other communities, leading to many unique service delivery models for First Nations Peoples (including those living with HIV), which have different positive and negative impacts on people's health. Before we designed our own health services, nurses would have to send patients out of community to get care for sexually transmitted infections and other blood-borne infections (STBBIs). Now, they can stay in their home community and access holistic care, because we designed it that way.
What role do you play in supporting your clients to access HIV treatment when ready and stay on HIV treatment over the long term?
My role is making sure the programs are responsive to the needs of our people. Our team provides health education to individuals, families and community. We see our biggest role is to be the resource for our clients when they seek help. It is up to them if they choose to access care and support within the community or we can refer them to Access Place in Prince Albert (the nearest big city).
It is important for our nurses to take these conversations slowly, over a series of visits, and simplify the language and jargon associated with HIV. For example, we learned from our infectious disease doctor that the best way to describe viral suppression is to use simple language, such as "putting the virus to sleep with medication." This makes it easier for the client to digest. We also talk to clients about people who have been managing and living with HIV for many years and are the "role models."
We also refer clients to a traditional health program upon request, where they can have access to traditional medicines. The informed, motivated individual understands the disease process, and recognizes his/her role in self-care. It is essential to establish and maintain a proactive healthcare team, including a primary care physician, traditional healer, and interdisciplinary staff members, working together in a collaborative model and utilizing a holistic approach that addresses all aspects of an individual -- the physical, the mental, the emotional and the spiritual -- that must be addressed in order to promote health and healing.
I also engage in a lot of advocacy work as a manager, to address the barriers to treatment related to the social determinants of health. A lot of my work is in advocacy, particularly related to the racism within our healthcare system in general. Many clients face stigma on and off reserve and report racial discrimination in the health system. I work to advocate for culturally safe care, including building competency around trauma-informed care within our own Sturgeon Lake Health Centre.