What do the people with HIV that you work with know about undetectable viral load? Is having an undetectable viral load a priority in their lives?
Clients who are referred to our program live in urban and rural communities and may have additional challenges such as mental health and substance use, unstable housing, financial problems and food insecurity.
Many of the people we work with know about and place value on having an undetectable viral load. For our clients, having an undetectable viral load is very much about personal health and wellness. It represents the efforts that they have put towards their health, because it requires adherence; for some, it also represents feeling safe within their relationships as it removes the risk of transmitting the virus.
Many of our clients have lives that are chaotic; the concept of undetectable viral load really seems to provide a sense of control over the virus. Viral load and the goal of undetectabilty provide an opportunity for clients to quantify improvements in or the maintenance of their health. Clients talk about the actual number. Taking medication and reaching or maintaining an undetectable viral load is an opportunity to maintain control in their lives. It gives people a goal related to their own health that they can measure; its great positive feedback on their efforts to engage with us and take their medication when they know they are undetectable.
For people who are newly diagnosed, the concept of being undetectable seems to be a great indicator of how important HIV treatment is. Clients can see their health improve, even if they don't feel different, when they start to take treatment.
Having an undetectable viral load is definitely a priority in our clients' lives ... until it isn't. Priorities often come down to the social determinants of health and the client's stability. When a person is homeless and struggling with substance use or food insecurity, HIV medication and viral load are not a top priority. But, for the most part, when life situations are more stable, it is a priority. For people in serodiscordant relationships, however, maintaining an undetectable viral load seems to remain a priority, regardless of other circumstances; it just removes the incredible stress that can be associated with concerns around transmission.
Throughout the treatment cascade or continuum of care, what are the greatest barriers to having and maintaining an undetectable viral load for the community you work with?
Mental health, substance use, homelessness, HIV stigma, and the realities of living in a rural region are examples of barriers to treatment for the clients that we work with.
Many of our clients face issues of homelessness and unstable housing. Many stay in places that are not very safe. There have been a number of situations where a person is successfully on treatment, carries their treatment in their backpack, and then their backpack is lost or stolen at the shelter where they're staying. Because HIV medications are centrally dispensed in British Columbia (from Vancouver) it can actually be quite difficult and take some time for a person in this situation to get back on medication.
In our large region, many clients live in small communities and rural areas. It can be difficult to feel safe in terms of confidentiality and their HIV status. Despite the new knowledge we have about HIV, stigma still persists in communities. In some communities there is only one pharmacy and the client may know the pharmacist and not want to share their status. Significant concerns about others in the community learning their status and feeling unsafe for this reason creates important barriers to treatment.
Transportation can also pose a barrier to treatment. It can be a challenge for individuals to get to larger centres to receive HIV care or access medications. In some communities, there is limited internet and cell phone reception, which can make it challenging to connect with healthcare providers and our nursing team.
Finally, some of our clients face barriers to care and treatment post-incarceration. When people living with HIV are released, they are provided two weeks' worth of ARVs. Often, these individuals do not know where to go for HIV care post-release and they are then lost to care.
What role do you play in supporting your clients to access HIV treatment when ready and to stay on HIV treatment over the long term?
The biggest thing that we do to support clients in accessing HIV treatment is to assess and support issues related to the social determinants of health. We do a lot of work that is focused on the broad supports to staying on treatment: housing, food security, income security, mental health and substance use. In this way, advocacy is an important part of our nursing practice. We engage in client-centred case management to help set people up for success when they do start treatment.
In terms of directly supporting access to treatment, our nurses link people living with HIV to primary care and specialist care as needed. Given that in British Columbia, all medications are centrally provided through Vancouver, we need to work with clients to develop a plan for how they will access their drugs: in Vancouver, people will visit a pharmacy, but in our region, people may have medication delivered to a doctor or nurse's office, a health centre, or a pharmacy, depending on where they live. In small communities, we will occasionally partner with local community agencies to engage with clients and hold their medication. For example, we partner with drop-in centres where people who are homeless may drop in daily for meals. At the same time, the drop-in centre staff will offer them their medication. This all happens with the consent of the client, of course.
We also offer practical supports such as transportation to appointments and accompaniment during appointments. Sometimes, we are the only person who knows their HIV status, the only person that they have to speak openly with about HIV.
[Note from TheBodyPRO.com: This article was originally published by CATIE on Jul. 31, 2017. We have cross-posted it with their permission.]