Call to improve quality of life for people with HIV

Health systems should put more focus on long-term quality of life for people with HIV, as advances in treatment mean they now live long enough to suffer age-related illnesses, according to a new series of reports in The Lancet HIV.

Modern antiretroviral therapies (ART) are so effective at suppressing HIV and preventing AIDS that doctors now face a new problem: how to treat age-related illness in people infected with a virus that until recently would have killed them within a few years. To put it another way, people with HIV “are healthy so that they can become sick,” notes Luís Mendão, who was diagnosed with AIDS more than 20 years ago and now chairs the European Community Advisory Board for AIDS treatment.

Mendão was speaking to MEPs at the European Parliament in Strasbourg, at a roundtable event set up to discuss inter alia the reports in the new Lancet HIV Series on HIV Outcomes: Beyond Viral Suppression, which were published this week. 

The reports call for health systems to integrate HIV treatment with other health services and collect better data. The goal is to ensure that people with HIV can receive treatment for typical age-related conditions, while still taking account of all the other problems that come with having HIV. 

The reports were initiated and supported by the HIV Outcomes initiative, which seeks to improve the long-term health outcomes and quality of life of people living with HIV across Europe. 

People with HIV predisposed to some age-related diseases

People living with HIV in the long-term are increasingly hospitalised for typical age-related problems, such as cardiovascular disease, rather than AIDS – though new cases of the disease are still being diagnosed. “Even with the virus completely suppressed, people living with HIV have more inflammatory problems going on, and that predisposes them to some of these issues,” especially cardiovascular disease, hypertension and bone disease, said co-author Jane Anderson, consultant physician at Homerton University Hospital in London and co-chair of the HIV Outcomes initiative.

That’s complicated by the fact that treating HIV and treating these other conditions involves different medical expertise. “Very often our patients are seen by infectious disease specialists that are not trained in all these other comorbidities,” said Mendão. 

The additional health problems also mean older people with HIV often have to take a variety of medicines, besides antiretroviral therapy. “Although we have fabulous medicines now, they have adverse effects,” explained Anderson, who said that if care were more integrated, finding ways to reduce the risk of other health problems could become part of HIV treatment. 

People living with HIV are also more likely to develop mental health problems. “We have a structural problem, in that in many areas, mental health services and physical health services are separated” said Frédérique Ries, a Belgian liberal MEP.

But besides a lack of joined-up care, there are also cases where people with HIV are excluded from regular health services, said Philippa Harris, Deputy Editor of The Lancet HIV. “We continue to see denial of services and substandard care, just based on their [HIV] status,” she said. The stigma around HIV continues to be a problem – though a difficult one to define and measure, said Nikos Dedes, president of Positive Voice, a Greek association for people living with HIV and AIDS and co-chair of HIV Outcomes.

At the same time, HIV treatment requires long-term care on a very different scale to other conditions. “I’ve got patients I’ve seen for 20 years – that’s far beyond what any cancer doctor will see,” said Georg Behrens, professor for T Cell immunology in the Department for Clinical Immunology and Rheumatology at Hannover Medical School and member of the HIV Outcomes steering group. 

Lack of data remains a problem

Another obstacle is a lack of data on other health problems in people living with HIV, and of data concerning  quality of life more broadly. “Most countries don’t really know why people living with HIV end up in hospital, or what people with HIV are dying from,” said Jeffrey Lazarus, another co-author, professor at the Barcelona Institute of Global Health and co-chair of HIV Outcomes. He said that while there had been progress in persuading governments to measure quality of life, understanding how they measure it and how to compare health-related quality of life across countries is more complicated.

Three key figures are the UNAIDS 90-90-90 targets, adopted in 2014. They call for 90 per cent of all people living with HIV to be diagnosed, for 90 per cent of those diagnosed to receive antiretroviral therapy (ART), and for the virus to be successfully suppressed in 90 per cent of those receiving ART. 

The new papers in The Lancet HIV argue for a “fourth 90” that measures health-related quality of life. The series stops short of defining this new indicator precisely, but Lazarus said that while each of the other three is an “easy to remember line,” the fourth should be “some sort of composite index” that takes into account chronic health problems, as well as laws and regulations that affect people with HIV. In Spain, for example, people living with HIV cannot join the police or the military, he noted.

About The Series
The Series was led and guest edited by HIV Outcomes Co-Chairs Jeffrey Lazarus and Jane Anderson together with steering group member Georg Behrens of Hannover Medical School – who also represents the European AIDS Clinical Society (EACS) on HIV Outcomes’ steering group – and Teymur Noori from the European Centre for Disease Prevention and Control (ECDC) – an observer to HIV Outcomes’ steering group.