PRELIMINARY POSITIVE PERSPECTIVES SURVEY DATA RELEASED AT 9TH INTERNATIONAL AIDS SOCIETY CONFERENCE
Emotional support and stigma feature as having significant impact on the lives of people living with HIV
About the author
Dr Bruno Spire is a member of the Positive Perspectives Steering Committee. Dr Spire is 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 (PLHIV).
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 PLHIV, 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 International AIDS Society (IAS) 2017 conference in Paris. The poster presented at the conference, Experience of living with HIV: diagnosis & disclosure - findings from the Positive Perspectives study, focused on PLHIV perspectives around diagnosis, disclosure and stigma. The results suggest that PLHIV tend to feel better about living with HIV today, with only 27% allowing their diagnosis to stop them from planning for the future. However, these findings reinforce our understanding that the main issues facing PLHIV today are psychosocial, with PLHIV perceiving that society still has a bad perception of them and the disease.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 PLHIV, which we have witnessed over the past 20 years.
This is especially clear from the survey results around stigma. The fact that 82% of PLHIV 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.
Notably, self-stigma continues to have a large impact on the lives of PLHIV, with nearly a third of those surveyed stating feelings of self-blame, guilt and need for secrecy.
However, PLHIV 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% felt better education for the general public will help reduce stigma and 25% feel that better training of non-HIV specialists, including physicians, nurses and other healthcare professionals, would reduce stigma in the broader healthcare setting.
As a member of the Positive Perspectives survey Steering Committee it’s important to me that we continue to monitor the attitudes and perceptions of PLHIV to understand the evolving challenges they face, with a view to addressing their quality of life needs more effectively. I am particularly interested 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 PLHIV 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 to be presented later this year. It will focus on the how PLHIV feel about their treatment programmes and talking to their doctors.
The Positive Perspectives survey:
The Positive Perspectives survey is an international survey of PLHIV 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, PLHIV and patient group representatives. The first set of data, focusing on the attitudes and perspectives of PLHIV 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 PLHIV did and did not receive at diagnosis and the impact of stigma on the lives of PLHIV.
 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), 23‑26 July 2017, Paris, France. Listed at: http://programme.ias2017.org/Abstract/Abstract/3103. Last accessed July 2017.