Advancing the long-term well-being of people living with HIV

Since antiretroviral therapy (ART) for HIV was introduced in 1996, AIDS-related morbidity and mortality has declined significantly. People living with HIV are now expected to live nearly as long as people without HIV. Despite these advances, those living with HIV often report poor well-being and health-related quality of life.

To guide stakeholders in improving health system responses to achieve the best possible long-term health outcomes for people living with HIV, a global multidisciplinary group of HIV experts led by CUNY SPH Senior Scholar Jeffrey Lazarus and including Distinguished Professor Denis Nash and Associate Professor Diana Romero developed a consensus statement identifying the key issues health systems must address in order to move beyond the longtime emphasis on viral suppression to instead deliver integrated, person-centered healthcare for people living with HIV throughout their lives.

Following a rigorous, multi-stage Delphi process, the research team established a diverse panel of experts with expertise in the long-term health needs of people living with HIV. The panel reviewed the literature on multimorbidity and stigma and discrimination in order to identify priority issues to incorporate in the Delphi process to develop a consensus statement.

"An important strength of this consensus statement is that it was generated through this rigorous process, incorporating quantitative and qualitative data from experts from over 20 countries," says Dr. Romero.

The panel found that multimorbidity, health-related quality of life, and stigma and discrimination continue to be major issues for people living with HIV, including those who have achieved viral suppression and in particular those from marginalized populations.

"These factors can lead to depression, social isolation and barriers in accessing health and support services," says Dr. Lazarus, who is also associate professor at the Barcelona Institute for Global Health. "Many of these issues are not currently addressed in HIV monitoring, strategies or guideline."

'There is ample evidence that addressing things like mental health, stigma reduction, quality of life, and in many settings, housing and food security, will also improve HIV outcomes like adherence to antiretroviral medications and viral suppression," Dr. Nash says. "The field of HIV implementation science can play a key role in assessing the impact of strategies integrated into HIV service delivery to mitigate these issues."

The World Health Organization (WHO) and UNAIDS should create new HIV monitoring processes and guidelines, and Member States should commit to report on the indicators and implement policies to enhance health system performance and ensure the long-term well-being of the millions of people around the world living with HIV, the authors note.