Stigma and mental health challenges remain barriers to good quality of life for people living with HIV in urban settings
Findings from the Fast-Track Cities Quality of Life Surveyacross 15 cities worldwide were presented at the Fast-Track Cities 2019 conference in London
London, 11 September 2019 – Key trends from the Fast-Track Cities Quality of Life Survey were presented today at the Fast-Track Cities 2019 conference in London, the first international gathering of more than 300 cities and municipalities worldwide that are committed to accelerating their responses to HIV–as well as tuberculosis (TB) and viral hepatitis – with the shared goal of ending urban HIV, TB, and viral hepatitis epidemics by 2030.1
The Fast-Track Cities Quality of Life Survey evaluated key indicators related to the quality of life of people living with HIV (PLHIV) across 15 Fast-Track Cities worldwide, including mental health, experienced stigma and discrimination, and outlook on life. The findings shared today identify critical barriers to improving quality of life, with 38% of respondents indicating a diagnosis of anxiety and/or depressioni and respondents across all regions having reported that they had experienced stigma and discrimination within their local communities (34%) or in healthcare settings (20%).ii Notably, reported data reveal some disparity both between and within regions and cities.
Stigma and discrimination were identified as posing significant challenges to the wellbeing of PLHIV to varying degrees across all Fast-Track Cities surveyed. Negative trends are particularly high in sub-Saharan Africa and North America, where 51% and 48% of PLHIV, respectively, said they had experienced feelings of stigma and/or discrimination by their community in the past 12 months.i This figure was highest in Dar es Salaam (67%), Bamako (56%), Durban (52%), and Miami (50%). By contrast, the lowest levels reported were in Bangkok (14%) and Salvador de Bahia (17%).ii Across Europe, just under a third of respondents cited feeling stigmatised by their community in the last year.i
Kat Smithson, Director of Policy and Campaigns at the National AIDS Trust in the UK, said: “Experiences of people living with HIV are varied worldwide, but these findings show the negative impact of stigma is a commonality that is inextricably linked to quality of life. Across the world, societal inequalities and intersecting discrimination bolster this stigma. These inequalities must be addressed through action that puts people living with HIV and communities affected at the centre –on a local, national, and global scale. HIV stigma remains a key global challenge as we strive towards our shared goals of ending AIDS as a public health threat and ensuring that all people living with HIV can live well.”
The survey also explored emotional challenges, including worries associated with HIV status disclosure. Globally, 40% of respondents stated they had“almost always” or “often” worried about disclosing their HIV status to friends or family members in the past year. This figure was particularly high in Bamako (65%) and Santiago (49%) and it was lowest in Berlin(9%). Findings suggest that this worry often extends to status disclosure to intimate partners or spouses, with 46% of respondents in Athens and over half of those surveyed in Nairobi having worried about disclosing their status to an intimate partner or spouse in the same timeframe. In New York City, respondents generally revealed higher levels of concern around disclosing their status to intimate partners and spouses than to friends or family members (24% versus 13% respectively).ii
Overall, levels of stigma reported by PLHIV in healthcare settings were lower than those originating within their respective communities, but when experienced as part of the HIV treatment pathway, they are particularly striking. The proportion of participants citing feelings of stigma and/or discrimination by a healthcare facility or healthcare worker in the past 12 months was highest again in sub-Saharan Africa (36%), followed by Europe (20%), North America (15%), Asia (15%), and Latin America (11%). City-specific figures peaked in Dar es Salaam (52%), Durban (45%), Nairobi (35%), and Lisbon (26%).ii
Dr. José M. Zuniga, President/CEO of IAPAC, said: “Stigma and discrimination experienced in the context of healthcare provision, though not universally reported, is absolutely unacceptable. Healthcare workers have a critical role to play in providing a safe, supportive, and compassionate environment for PLHIV, which is known to support positive clinical outcomes, and respecting their dignity and human rights. These findings suggest that little progress has been made over the last decade, as they reveal similar trends to those identified in our 2010 AIDS Treatment for Life International Survey (ATLIS 2010). As a community of healthcare workers charged with the wellbeing of PLHIV, it is our duty to offer stigma-and discrimination-free health and supportive services.”
Insights from the Fast-Track Cities Quality of Life Survey also reveal widespread concerns related to the self-reported mental health of PLHIV. These concerns were most prevalent across sub-Saharan Africa and North America, where 38% and 36% of survey participants, respectively, reported having “almost always” or “often” experienced anxiety and/or depression in the past 30 days. The highest levels were reported in Bamako (73%), Durban (45%) and Miami (41%). On average, these conditions were cited less frequently across Europe and Latin America (27% and 19%, respectively). The lowest levels were recorded in Bangkok, with only 8% of PLHIV surveyed having “almost always” or “often” experienced anxiety and/or depression in the last month.ii
Robert Remien, Director of the HIV Centre for Clinical and Behavioural Studies in the Division of Gender, Sexuality, and Health, and Professor of Clinical Psychology at Columbia University in New York City, said: “We know that there are higher rates of mental health disorders among people who are vulnerable to acquiring HIV and among those living with HIV, with both biological and social determinants of these conditions. We also know that societal and interpersonal stigma and discrimination –both actual and perceived – are associated with psychological distress, while positive social support and provider-patient relationships are associated with increased feelings of wellbeing and improved quality of life. Thus, it is likely that similar structural and interpersonal factors that contribute to decreased distress and to positive wellbeing also contribute to better health outcomes along the HIV care continuum, and that there is synergy between improving psychological wellbeing and improving HIV health outcomes.”
In addition, the survey evaluated the overall outlook on life among PLHIV, which also showed signification variation between Fast-Track Cities. In Dar es Salaam and Bamako, just one in five of those surveyed reported having a “positive” or “very positive” outlook on life in the past 12 months, compared to 83% of PLHIVin Nairobi, 67% in Bangkok, and 64% in New York City.ii
Dr Benjamin Young, Head, Global Medical Directors at ViiV Healthcare, said: “Ensuring PLHIVhave a good quality of life is integral to curbing the HIV epidemic. Urban centres represent key catalysts for change, and the Fast-Track Cities initiative provides a vital framework to tackle the complex emotional challenges faced by PLHIV globally. Together we must urgently expand our focus – beyond medical intervention alone – to address the myriad of social and behavioural factors that can also impact a patient’s wellbeing."
Finding from the Fast-Track Cities Quality of Life Survey that were presented at the conference in London today can be found at: www.iapac.org/FTCQoLSurvey.
Notes to editors:
About Fast-Track Cities and the Fast-Track Cities Quality of Life Survey
Cities and municipalities are home to large numbers of people living with HIV, among who are many belonging to key populations at higher risk of HIV but which often have limited access to HIV services. The Fast-Track Cities is a global partnership between more than 300citiesand municipalities, the International Association of Providers of AIDS Care (IAPAC), the Joint United Nations Programme on HIV/AIDS (UNAIDS), and the United Nations Human Settlements Programme (UN-Habitat), and the City of Paris. The initiative was launched on World AIDS Day 2014 in Paris. For more information please visit: www.iapac.org/fast-track-cities.
The Fast-Track Cities Quality of Life Survey was developed by IAPAC, in partnership with the Joint United Nations Programme on HIV/AIDS (UNAIDS), the Global Network for People living with HIV (GNP+) and the International Community of Women Living with HIV (ICW). The survey was funded through a grant provided by ViiV Healthcare and conducted in 15 cities, across sub-Saharan Africa (Bamako, Dar Es Salaam, Durban, Nairobi); Asia (Bangkok); Europe (Athens, Berlin, Lisbon, Madrid); Latin America (Buenos Aires, Salvador de Bahia, Santiago); and North America (Miami, Montréal, New York City). As designated Fast-Track Cities, all 15 Fast-Track Cities have formally committed to scaling-up their local AIDS responses to end their HIV epidemics by 2030.
About the International Association of Providers of AIDS Care(IAPAC)
IAPAC was founded more than three decades ago with a mission to improve access to, and the quality of, prevention, care, treatment, and support services deliver to people living with and affected by HIV and comorbid diseases, including tuberculosis (TB) and viral hepatitis (HBV and HCV). With more than 30,000 members globally, IAPAC is the largest association of clinicians and allied health professionals who are working to end AIDS as a public health threat by 2030. IAPAC is a core technical partner of the Fast-Track Cities initiative. For more information, please visit: www.iapac.org
About ViiV Healthcare
ViiV Healthcare is a global specialist HIV company established in November 2009 by GlaxoSmithKline (LSE: GSK) and Pfizer (NYSE: PFE) dedicated to delivering advances in treatment and care for people living with HIV and for people who are at risk of becoming infected with HIV. Shionogi joined in October 2012. The company aims to take a deeper and broader interest in HIV/AIDS than any company has done before and take a new approach to deliver effective and innovative medicines for HIV treatment and prevention, as well as support communities affected by HIV.
For more information on the company, its management, portfolio, pipeline, and commitment, please visit www.viivhealthcare.com
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i International Association of Providers of AIDS Care. Fast-Track Cities Quality of Life Survey. Available at: http://www.iapac.org/FTCQoLSurvey. Last accessed: September 2019.
1. More information on the Fast-Track Cities initiative is available here.