Linkage to Care and Support
Linking people who receive a positive diagnosis to accessible and culturally appropriate care and support services is important to ensure that people living with HIV enter the next step of the treatment cascade. Research shows that delays in linkage to medical care after HIV diagnosis are associated with faster disease progression.4 Interventions that currently improve linkage to care in Canada include the following:
- Referral systems that link people diagnosed with HIV into care. For example, the Manitoba HIV program, which provides a wide range of integrated care and support services at two sites in Winnipeg, has a referral line for people who test positive. This line can be used by the healthcare provider who performed the test to refer newly diagnosed individuals to the Manitoba HIV program for care.
- Improved outreach interventions. For example, the STOP Outreach Team in Vancouver uses case-management to connect people with complex needs to the most appropriate service or program and ensures strong engagement in care before discharging them from the team's caseload.
Retention in Care and Adherence Support
Once linked to care, a person needs to be supported and monitored and receive counselling to determine when they are ready and eligible to start treatment. Once a person decides to start treatment, remaining in care is important so a person can be supported with adherence and receive ongoing viral load monitoring to ensure that their treatment is working.
Appropriate care and support for people living with HIV may include a wide range of services in addition to medical care, such as mental health and addiction services, adherence support, affordable housing and prevention counselling. These services can improve the quality of life of people living with HIV, address the underlying reasons people may drop out of care or find it difficult to adhere to treatment, and improve sexual well-being. Research shows that a combination of medical care and additional types of care and support improve the health outcomes of people living with HIV13 and make them less likely to engage in behaviours that can lead to HIV transmission.14
Recently, the International Association of Providers of AIDS Care released guidelines for healthcare providers that contain 37 evidence-based recommendations to improve retention in care and adherence to antiretrovirals.
Interventions and services are offered across Canada that keep people engaged in care and help them access treatment, adhere to their medications and prevent the transmission of HIV.
- Intensive case management approaches can improve engagement in care by providing tailored support to individuals who need it. For example, the Manitoba HIV program proactively follows up with people who entered the program but have been lost to care and provides highly individualized services to people who have a history of lapses in care.
- Maximally assisted therapy (MAT) programs deliver daily treatment and support services to their clients. For example, the Positive Outlook Program at Vancouver Native Health Services and the MAT program at the Downtown Community Health Centre in Vancouver both provide assistance with daily treatment adherence and comprehensive support to their clients.
- Peer navigator programs train HIV-positive peers to offer services to people living with HIV who face multiple barriers to engagement. For example, Positive Living BC's peer navigators provide tailored support to people who need it. They do this through community outreach and at the Immunodeficiency Clinic at St. Paul's Hospital.
- Programs that offer psychosocial supports, such as housing and food security programs, can reduce structural barriers to engagement in HIV care and treatment. For example, La Corporation Félix Hubert d'Hérelle in Montreal, the SHARP Foundation in Calgary, and many others across the country offer housing and housing supports to people living with HIV. A Loving Spoonful in Vancouver offers 1,200 meals a week to people living with HIV.
- Programs that support people living with HIV to live healthy sexual lives and incorporate prevention as part of their overall health and well-being. For example, the Poz prevention program at Toronto People With AIDS Foundation provides peer consultations, training for service providers and group discussions on sexual health and HIV prevention.
What Can You Do?
Public health authorities, healthcare providers and frontline service providers all have a role to play in making services more accessible and providing people with ongoing care.
Patching the leaks in the cascade may require new interventions and new partnerships and/or the re-conceptualization of how services are integrated and linked with other services. It may also involve changing how services are evaluated.
Key questions to ask yourself and your organization are:
- How can your organization better engage people living with HIV in the treatment cascade?
- What additional services could your organization provide to improve engagement in one or more steps of the cascade? Can you learn from what other agencies have done? Would it work in your region?
- What initiatives or partnerships could you develop to connect people living with HIV to your services? What initiatives or partnerships could you develop to connect your clients with other relevant services in your community?
- How can you evaluate whether your clients are entering the next step of the cascade?
As we work to improve engagement in the treatment cascade, it is critical that human rights are respected and that people living with HIV and at risk of HIV are empowered through information to make decisions about testing and treatment that are right for them. This includes information about the legal requirement to disclose prior to some sexual activities.
Improving HIV Treatment and Prevention
Each step in the cascade is important for improving the health of people living with HIV and preventing new transmissions. The idea of a treatment cascade is useful for conceptualizing how services are linked and for identifying gaps that need to be addressed. At the same time, it has several shortcomings. First, it represents care for people living with HIV as a linear process, which we know isn't always the case. For example, a person living with HIV may fall out of care or stop treatment for various reasons, they may move backwards or forwards at different points along this continuum, or they may receive healthcare for many years without starting treatment. When developing programs and services, we need to take these realities into account. Secondly, the concept of a treatment cascade does not include prevention as a component of an effective response. As a model of care for people living with HIV, it indirectly reinforces the false view that the responsibility for HIV prevention rests solely with people living with HIV. In fact, prevention is a shared responsibility and all people, regardless of serostatus, have an important role to play. Additionally, treatment as a mechanism for prevention is only one of several effective prevention strategies, all of which, when appropriately combined will provide a more effective response to the HIV epidemic than any one strategy alone. We should no longer do prevention work in isolation of those working in HIV testing, treatment, care and support, as they are all reinforcing elements of an effective response to HIV.
While each organization has a role to play in improving care for people living with HIV, we also need to look at the issue from a systemic level. How can we, as policymakers, service providers, healthcare providers and people living with HIV, improve services for people living with and at risk of HIV? We need to identify gaps and ways to improve care in conjunction with the community, to ensure that a person can effectively navigate their way within the healthcare system. Fragmented, stand-alone programs and services need to be linked to ensure that people living with and at risk for HIV have access to services that can support their care.
In September 2013, CATIE will host a national forum called New Science, New Directions in HIV and Hepatitis C. This forum will provide an opportunity for frontline workers to come together to learn about new directions in service provision, share programming experiences and strategize about developing more integrated approaches to treatment and prevention.