EXPERIENCES OF HIV DIAGNOSIS AND DISCLOSURE
About the author
Dr Bruno Spire is a member of the Positive Perspectives Steering Committee and a Senior Scientist at the French National Institute for Medical Research (INSERM) who describes himself as an activist involved in HIV research. He co-led a large study in France, the VESPA study, to find out more about how living with HIV impacts people day to day. He joined the Positive Perspectives Steering Committee because he believes that a global view of the same topic would identify key areas where additional support could help improve the well-being of people living with HIV.
Having specialised in the research of HIV for many years, I’m privileged to have witnessed the incredible medical progress that has contributed to a greater life expectancy and quality of life for people living with HIV, which we have witnessed over the past 20 years.
This progress is reinforced by the first set of Positive Perspectives survey data findings, shared at the 9th IAS Conference on HIV Science (IAS 2017) in Paris. The poster presented at the conference; Experience of living with HIV: diagnosis & disclosure - findings from the Positive Perspectives study, focused on the perspectives of people living with HIV around diagnosis, disclosure and stigma.1 The results suggest that people living with HIV tend to feel better about living with HIV today, with only 27% (292/1,085) allowing their diagnosis to stop them from planning for the future.1 However, these findings reinforce our understanding that the main issues facing people living with HIV today are psychosocial, with many perceiving that society still has a bad perception of them and the disease. Having specialised in HIV research for many years, I’m privileged to have witnessed the incredible medical progress that has contributed to a greater life expectancy and quality of life for people living with HIV, which we have witnessed over the past 20 years.
This is especially clear from the survey results around stigma.1 The fact that 82% (892/1,085) of people living with HIV surveyed have experienced some form of stigma in the last year is terrible. It illustrates that despite fantastic medical advances, people remain very ignorant about the disease.
However, people living with HIV who took part in the Positive Perspectives survey felt that there were a number of ways in which the feeling of stigmatisation could be decreased – 64% (694/1,085) felt better education for the general public will help reduce stigma and 26% (283/1,085) feel that better training of non-HIV specialists, including physicians, nurses and other healthcare professionals, would reduce stigma in the broader healthcare setting.1
As a member of the Positive Perspectives survey Steering Committee, it is important to me that we continue to monitor the attitudes and perceptions of people living with HIV to understand the evolving challenges they face, with a view to addressing their quality of life needs more effectively. I am particularly interested in how we can better understand patients’ desires to minimise the impact their treatment has on their everyday lives. It is important for the HIV community to work together to help people living with HIV understand the options they have and show them that the latest research allows them to safely live long and satisfying lives.
While this is just the beginning for Positive Perspectives, I am looking forward to the next release of data. It will focus on the how people living with HIV feel about their treatment programmes and talking to their doctors.
For Positive Perspectives data highlights, view this infographic.
The Positive Perspectives survey:
The Positive Perspectives survey is an international survey of people living with HIV and their partners, carried out to better understand their emerging needs and challenges, and to learn how HIV continues to affect their lives. The survey was conducted by ViiV Healthcare, in collaboration with an international, multi-disciplinary Steering Committee of experts, which includes HIV physicians, people living with HIV and patient group representatives. The first set of data, focusing on the attitudes and perspectives of people living with HIV at diagnosis and disclosure, was presented on 24 July 2017 at the 9th International AIDS Society meeting in Paris. The data highlighted key global trends about the emotional support that people living with HIV did and did not receive at diagnosis and the impact of stigma on their lives.
References:
- Murungi A, et al. Experience of living with HIV: Diagnosis & Disclosure – findings from the Positive Perspectives study. Presented at the IAS Conference on HIV Science (IAS 2017), 2326 July 2017, Paris, France. Available at: https://www.natap.org/2017/IAS/IAS_69.htm. Last accessed January 2021.
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