Authors: ViiV Healthcare
In this article, we explore the crucial role of shared decision-making in HIV treatment and hear from David Hardy (Johns Hopkins University School of Medicine, MD, USA) as he shares his perspective on the current landscape and the future of this issue.
The HIV Epidemic has changed…for the better. Rapid, innovative advances in the development of potent antiretroviral therapy (ART) have transformed a once nearly 100 percent fatal disease into a long-term treatable health condition with which persons are commonly living into older age.
By 2020, it is estimated that there will be almost 9 million people aged 50+ living with HIV , with the median age of people living with HIV (PLHIV) expected to steadily increase as the scale-up of HIV treatment continues and more PLHIV benefit from these dynamic treatment advances .
While there is still more to be done to provide universal access to ART, significant progress has been made in reaching the UNAIDS 90–90–90 targets by 2020. These targets are:
- 90% of all PLHIV will know their HIV status
- 90% of all people with diagnosed HIV infection will be in medical care and receive sustained ART
- 90% of all people receiving ART will have viral suppression
Shifting focus to achieve a more ‘normalized’ life for people with HIV
Improvements in ART and the resulting increases in lifespan mean that many PLHIV are now living longer, with the focus moving away from surviving HIV, to living well with HIV. Emphasis has shifted from lifespan to healthspan, with improved health-related quality of life (QoL) being the desired goal. The importance of long-term health and wellbeing with a focus on QoL is becoming a critical priority in the care of PLHIV, a target that is quickly becoming the ‘fourth 90’.
The fourth 90 aims to expand the continuum-of-treatment paradigm beyond the existing endpoint of viral suppression.
David Hardy: “It is now well-established that people are living into older age with HIV. While we continue to celebrate the fact that treatment advancements have made this a reality, we now need to look at how we can further improve PLHIV’s QoL by ‘de-medicalizing’ their lives. I am talking about developing treatment regimens and strategies that reduce the intrusion of medical treatment in PLHIV’s lives. Afterall, what is the point of living longer if you are not living well….”
Open, active dialogue plays a pivotal role in HIV care
Involving PLHIV in their care and treatment decisions at every step of their lives is key to empowering them to achieve optimal health outcomes and health-related wellbeing. Open and active two-way communication and a strong, honest relationship between healthcare professionals (HCPs) and PLHIV are critical to fostering a therapeutic environment. It’s in such an environment that PLHIV feel able to discuss their treatment concerns and aspirations, and HCPs can encourage PLHIV to be partners in recommending medical advice to deliver optimal, PLHIV-centered health outcomes.
While many older PLHIV face the same health challenges as older individuals without HIV, it is important to recognize that they also can be at greater risk for certain comorbidities as they live with HIV. Thus, ongoing treatment discussions over a lifetime with HIV are necessary and expected.
DH: “The treatment of HIV is highly dynamic, more so than many other therapeutic areas. Considering this, shared decision-making is crucial, now more than ever. Building a mutually respectful and well-functioning relationship between healthcare provider and person living with HIV, will create an environment in which treatment decisions will be far more informed, and PLHIV will have a greater sense of empowerment and are more likely to achieve optimal medical outcomes. Open, honest dialogue and mutual respect are crucial to building these well-functioning relationships and, as HCPs working with PLHIV, we must actively encourage this. The medical aspects of living with HIV are only one of many forces with which PLHIV must contend. We must endeavor to understand the fellow human being in front of us, their holistic needs and how through the right treatment across their lifespan, we can help all PLHIV achieve a ‘self-perceived’ optimal QoL.”
Patient-reported outcomes (PROs) provide crucial insights
As part of its continued commitment to the global HIV community, ViiV Healthcare (London, UK) is undertaking research to better understand the desires, needs, concerns and goals of PLHIV on a global scale. The Positive Perspectives 1 (PP1) survey, focused on the attitudes and perspectives of PLHIV and their partners, particularly how they felt about their HIV diagnosis, treatment decisions and the stigma they experience. Topline insights from the survey showed that :
- PLHIV who perceive themselves to be involved in their HIV therapy decisions are more convinced and satisfied with their treatment and have fewer concerns about side effects.
- Almost three quarters of PLHIV surveyed (72% n=783/1085) who are taking ART sometimes worry about the long-term effects of their HIV medication. This highlights the important shift in attitudes and self-awareness seen over recent years, with PLHIV thinking beyond viral load suppressing when considering their treatment.
- Of those surveyed, most PLHIV (71% n=789/1111) are very comfortable raising issues of concern with their main HIV doctor or medical provider, which is essential to empower PLHIV to become actively involved in making decisions about their health outcomes. However, almost a third of respondents, are not.
To continue to understand the perspectives of PLHIV, ViiV Healthcare has completed a follow-up to the PP1 survey, this time focused on PLHIV’s experiences with their medications and shared decision-making, both of which highlight the need for open conversations with HCPs. If progress in PLHIV-centered research is to continue to advance, then research like this, that focuses on PROs, is critical.
DH: “In a more connected and resource-rich world, it is becoming easier and more important to listen to the patient voice. Globalizing that voice and listening to what PLHIV from both research-rich and resource-limited areas of the world are saying about their treatment attitudes, needs and goals, will make treatment outcomes and future development of ART more reflective of real-world information. I am honored to be a part of the Positive Perspectives 2 study as it takes a deeper look at the global perspective of PLHIV’s experience with their ART and other medical treatments and how that correlates with treatment outcomes. This is an exciting time in HIV treatment development – now focused not only on safety and efficacy of ART and increasing lifespan, but also on how future ART will have a less invasive impact on the lives of PLHIV and more emphasis on optimizing self-perceived QoL.”
A 360-degree holistic approach to HIV care is how we achieve the fourth 90
With contemporary ART regimens, living with HIV has become a long-term health condition. Conversations now must focus on the future lives of PLHIV and how to achieve optimal health-related wellbeing. There is a need for HCPs to continue to listen to their PLHIV and involve them in healthcare decision-making.
DH: “In the coming years, the UNAIDS 90–90–90 targets are not going to be enough. These goals have been instrumental in advancing the current success of HIV care and continue to be the global standard to work to achieve; however, once reached, being virally undetectable is simply not enough. Current ART regimens are often personally invasive, impractical, time- and energy-consuming and often do not take into consideration the emotional aspects of living with HIV; for these reasons, the third 90 will continue to be challenging to reach and maintain on a long-term basis for many. It is time to stop settling for just living with an undetectable viral load and strive to ensure a life where PLHIV thrive.
Achieving the fourth 90 is an essential part of a PLHIV-inclusive, holistic approach to living with HIV. It will however, be a much different type of target. Measured qualitatively, rather than quantitatively, the fourth 90 goal is much more challenging to measure. What is critical to take from this goal is the importance of individualization and fostering patient empowerment. By involving PLHIV in a 360-degree care model, we can strive to achieve optimal wellbeing on an individual basis.”
Several key elements must be employed in HIV care when considering a 360-degree approach towards achieving a ‘normalized’ life for PLHIV:
- The importance of open dialogue between HCPs and PLHIV
- Having open discussions with their HCP helps PLHIV to feel empowered, educated and informed about their therapy choices .
- Empowering PLHIV to become more actively involved in their care
- Understanding HIV treatment helps empower PLHIV to become more active in their care which can lead to better health outcomes [4,5].
- Raising treatment expectations
- Encouraging PLHIV to aspire to treatments that not only keep them undetectable and minimize side effects but also support overall wellbeing.
- Managing treatment over the long-term
- Becoming more familiar with their medications can help PLHIV understand the effects of their treatment on their bodies over the long-term and how their HIV medication may interact with medicines they are taking for other health conditions. New treatments aim to address the effects of taking HIV medicines over a lifetime and support overall wellbeing .
- Collaboration and PROs are key to improve QoL and health-related outcomes
- We need to work together as a community to help PLHIV to understand their treatment options, particularly when considering our aging HIV population. Integrating PROs in everyday clinical care and community events can provide useful insights into people’s overall wellbeing and will help us to improve long-term health-related outcomes and ensure PLHIV receive treatment that fits their current and future health goals.
This feature has been sponsored by ViiV Healthcare.
- UNAIDS. Get on the fast-track, the life-cycle approach to HIV 2016.
(Accessed 5 November 2019)
- Harris TG, Rabkin M, and El-Sadr WM. Achieving the fourth 90: healthy aging for people living with HIV. AIDS 32(12), 1563–1569 (2018).
- ViiV Healthcare. Data on File – Positive Perspectives Survey 2017.
(Assessed 5 November 2019)
- Coutler A, Ellins J. Effectiveness of strategies for informing, educating and involving patients. BMJ 335(7609), 24–27 (2007).
- Berkman ND, DeWalt DA, Pignone MP et al. Literacy and health outcomes. Evidence Report/Technology Assessment No. 87
http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.210.2733&rep=rep1&type=pdf (Accessed: 30 April 2019)
- McKinnon JE, Mellors JW Swindells S. Simplification strategies to reduce antiretroviral exposure: progress and prospects. Antivir. Ther. 14(1), 1–12 (2009).
David Hardy serves as Adjunct Professor of Medicine, Division of Infectious Diseases at Johns Hopkins University School of Medicine (MD, USA). He served as Senior Director of the Research Department at Whitman-Walker Health (Washington DC, USA) overseeing NIH-funded ACTG trials and HIV Cohort studies and industry-sponsored trials from 2015–2018. From 2002 to 2013 he served as Director, Division of Infectious Diseases at Cedars-Sinai Medical Centre and Professor of Medicine at the David Geffen School of Medicine at UCLA (CA, USA). Dr Hardy also served as Chief Medical Officer for Calimmune (CA, USA) (2013–2015), a small, California-based biotechnology company, funded by the California Institute for Regenerative Medicine (CIRM), using gene-modified CD4+ T cells and hematopoietic stem cells as a potential cure for HIV infection.
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- He received his medical degree from Baylor College of Medicine (TX, USA) and completed his residency in internal medicine at Harbor-UCLA Medical Centre in Torrance (CA, USA). Early in the AIDS epidemic, he completed a clinical fellowship in infectious diseases/immunology and clinical research at the UCLA School of Medicine under the direction of Michael Gottlieb, the physician who recognized and reported the first cases of AIDS. He also completed a laboratory fellowship in molecular retrovirology with Irvin Chen at the David Geffen School of Medicine at UCLA focusing on development of retroviral vector delivery of gene therapy and vaccine applications.
Dr Hardy has cared for persons with HIV infection since 1982 and conducted research on HIV and related diseases since 1984. His research has focused on treatment and prevention of opportunistic infections, antiretroviral therapy, immunotherapies, hepatitis treatments as well as retroviral vector research, cellular and gene therapy as strategies for cure of HIV infection. Dr Hardy currently serves as Immediate Past-Chair of the Board of Directors of the HIV Medicine Association (HIVMA) as well as Chair of the Education Committee of the American Academy of HIV Medicine (AAHIVM). He has served as Editor-in-Chief of AAHIVM’s comprehensive clinical textbook, Fundamentals of HIV Medicine for the HIV Specialist published in 2007, 2008, 2012, 2017 and 2019. He has volunteered with several community-based organisations, including AIDS Research Alliance, the Alliance for Housing and Healing, Being Alive-Empowering People with HIV/AIDS, Project Angel Food and AIDS Project Los Angeles.
- Advisory Boards/Consulting: Gilead, GSK/ViiV Healthcare, Merck
- Consulting: Enochian Biosciences, CSL Behring (Calimmune)