In the leadup to AIDS 2018, I will be posting on this blog is to stimulate thinking around the community’s role in what’s been called “The 4th‘90’” and to bring non-health-related components of quality of life into the discussion.
Everyone has a different definition of quality of life. For some, it means good health. For others a sense of wellness. For many, it is defined according to basic needs, such as food, water, housing and personal safety. As we move towards community-based interventions that improve the quality of life for people living with HIV, it’s important that many aspects be considered. I don’t have the answers, nor all of the important questions. That’s the reason for framing this discussion here.
Quality of life is emerging as the fourth component of the continuum (or cascade) of care for people living with HIV. Buzzwords such as “patient-centred care” and “chronic care principles” are being used with few strategies to measure what this means, especially when it comes to community interventions.
Much work has been started on quality of life, notably in Europe, spearheaded by “Beyond viral suppression…” by Lazarus et al, which has been followed up by a multi-stakeholder initiative called HIV Outcomes: Beyond viral suppression. The recommendations are important, addressing innovative approaches, increased measurement, funding for studies, reduced stigma and discrimination and community involvement.
This work is ground-breaking but, of course, the devil will be in the details and it will all depend on how these recommendations will be implemented. We’ve seen only partial implementation of GIPA and, in many settings, complete refusal to include key populations. Biomedical approaches to care and prevention have sometimes redirected community resources to deal with structural and societal approaches. In spite of being holistic and person-centred, Positive Health Dignity and Prevention has only been implemented to a limited extent.
Addressing health and wellness in an integrated, person-centred manner with full and meaningful involvement of the HIV community carries with it a significant challenge for the health system, healthcare providers, third-party payers (insurers and/or governments) and people living with HIV, especially in settings where 90-90-90 is still a far-off target. Adding a 4th component to the cascade – as essential as it is – will not be easy, if the history of the incomplete implementation of GIPA is a precedent.
The task becomes even more daunting when we look at when quality of life should be addressed. The notion of “beyond viral suppression” assumes that quality of life interventions begin once people are diagnosed, on treatment and their HIV is undetectable. At a meeting at the International HIV/AIDS Alliance on Quality of Life this past May, Bakita Kasadha from The Global Network of Young People Living with HIV correctly reminded us that a good quality of life is important BEFORE AND BEYOND viral suppression. In fact, achieving a better quality of life for some people is a prerequisite before being able to enter the continuum of care in the first place.
This is especially true for key populations. People who are left behind because of oppressive laws, stigma and discrimination and complex health needs require particular attention to long-term health and wellness goals. How do we address the vast disparity among those in power and those excluded? Once we reach 90-90-90, who are the ones left behind and how can they access the opportunity to improve their quality of life and remain in the cascade? For many people, entering the continuum of care in the first place is a major challenge, let alone aspiring to the 4th 90.
At the same Alliance meeting in May, Angelina Namiba from Salamander Trust reminded us that people living HIV need the KNOWLEDGE, WILL AND POWER in order to be involved in patient-centred care approaches. Breaking this down, people living with HIV need health and wellness literacy to know how to deal with their chronic disease and navigate the healthcare system. They then need to want to take an active role. Many people living with HIV don’t want to take an active role in their disease management because they’re either too busy taking care of their family’ basic needs and/or they have to deal with stigma and discrimination. Finally, people living with HIV need to have the power to act. This would mean – at a minimum – that they operate within systems that are free from stigma and discrimination. This is certainly not the case at the moment. In the ideal situation, giving power to the HIV community means much more, including handing over decision-making regarding the prioritising types of services and deciding how they’re delivered.
It’s fantastic that leaders are calling for person-centred, chronic care approaches to long-term HIV care. We know from other chronic disease, like arthritis, diabetes and cancer, that this is the way to go. Let’s make sure that more than lip service is paid to these important ideas and explore the role of community in addressing both health-related and non-health-related quality of life.
What are our priorities?
How do we want services to be provided?
How will we measure our successes?
What needs to be in place for people living with HIV and, especially key populations, to be able to participate in quality of life initiatives?
In the next few blogs, I’ll highlight issues and resources around the 4 theme areas of the AIDS 2018 Main Conference workshop: (1) innovative person-centred approaches, (2) non-health-related quality of life, (3) populations left behind and (4) measurement. For more information on the workshops, click on the AIDS 2018 Workshops tab in the menu.
Like I stated at the beginning. I don’t have any answers and I’m sure I don’t have all of the important questions. What I do know is that quality of life is not only a medical or public health issue and that it’s important for the community to take a significant role if we want to reach our goal of ending AIDS.
Scroll to the bottom to leave a comment.