Information for patients

Research is essential if we are to understand more about HIV infection and to get better and safer treatments. The research carried out by ART-CC is focused on patients who are receiving antiretroviral therapy. Several ART-CC papers have contributed to treatment guideline development.

Patients may be particularly interested in our research summaries, VACS Index 2.0 and links to support groups.

Further information for patients can be found on the HIV treatment information base.

Below we explain the results of some of our recent analyses.

Outcomes for persons with triple-class resistant HIV and a history of virologic failure

Most people living with HIV can control the virus with modern antiretroviral treatment. However, a small number of people have HIV that has become resistant to several different types of HIV medicines. Finding treatments that continue to work for these individuals is an important challenge. This study looked at people with "triple-class resistant" HIV who had previously experienced treatment failure and received a combination of medicines known as the TRIO regimen (raltegravir, etravirine, and darunavir/ritonavir).

We analysed data from 126 adults who started the TRIO regimen between 2007 and 2018 and examined whether the virus became undetectable, whether treatment could later be simplified, and how often serious health outcomes such as AIDS or death occurred.

Around three-quarters of participants achieved viral suppression while taking the TRIO regimen. Among those whose virus was successfully controlled, almost one in three later switched to a simpler treatment using fewer HIV medicines, and most remained virally suppressed after making this change. Although some people needed to move to different treatment combinations over time, relatively few died while receiving TRIO treatment.

These findings are encouraging for people living with HIV who have developed resistance to several HIV medicines. They suggest that effective treatment is still possible for many people with highly resistant HIV and that, once the virus is controlled, some individuals may be able to move to simpler treatment regimens without losing viral suppression. The results can help doctors make treatment decisions for people with complex treatment histories while newer HIV medicines continue to become available.

Drinking alcohol is common among people living with HIV, but different studies measure alcohol use in different ways. This makes it difficult to compare results across countries and understand how alcohol affects long-term health. We developed a way to convert different measures of alcohol consumption into a common scale so that information from several HIV cohorts could be combined.

We analysed data from thousands of people living with HIV across several countries. We converted different alcohol questionnaires into estimates of the average amount of alcohol consumed each day and then examined how different levels of drinking were associated with the risk of death.

The study found that heavier alcohol consumption was linked with a higher risk of death. People reporting the highest levels of drinking had substantially higher mortality than those who drank small amounts. The researchers also found that people who reported no alcohol use had higher mortality than light drinkers, although this may partly reflect underlying health problems or other differences between people who do and do not drink, rather than alcohol itself. The new harmonisation method produced similar patterns across different ways of measuring alcohol use.

This research provides a practical way for scientists to combine alcohol data from many HIV studies around the world. Better comparisons between studies will improve future research on alcohol and health. The findings also reinforce the importance of identifying and supporting people with HIV who drink heavily, as reducing harmful alcohol use could improve long-term health and survival.

Cannabis Use and Self-Reported Bothersome Symptoms in People with HIV

Cannabis use is common among people living with HIV. Some people use it to help manage symptoms such as pain, nausea or poor appetite, but there is limited evidence about how cannabis use relates to people's overall physical and mental health. This study explored whether people who used cannabis reported different symptoms from those who did not.

We analysed information from people living with HIV in Switzerland and the United States. Participants completed questionnaires about symptoms they had experienced during the previous four weeks, and cannabis use was measured using both self-report and laboratory testing. This allowed us to compare symptom patterns using two independent measures of cannabis use.

Around one in four participants had evidence of cannabis use. People who used cannabis were more likely to report bothersome symptoms than those who did not. The strongest associations were seen for memory problems, anxiety, depression and nausea. Because this was an observational study, it cannot show whether cannabis caused these symptoms or whether people with more symptoms were more likely to use cannabis to manage them.

The findings highlight that cannabis use among people living with HIV is common and is linked with a greater burden of physical and mental health symptoms. While cannabis may help some people manage certain symptoms, this study suggests that healthcare professionals should discuss cannabis use openly with patients and consider both its possible benefits and its potential risks. More research is needed to understand whether cannabis improves symptoms, worsens them, or is mainly used by people who are already experiencing poorer health.

The relationship of smoking and unhealthy alcohol use to HIV care retention and viral suppression: findings from a multi-site cohort study

Smoking and unhealthy alcohol use are more common among people living with HIV than in the general population. Both can affect overall health, but it is less clear whether they also make it harder for people to stay engaged in HIV care or to keep the virus under control with treatment. This study investigated whether smoking and unhealthy alcohol use were linked to attending HIV care regularly and achieving viral suppression.

We analysed information on thousands of adults receiving HIV care and examined participants' smoking status and alcohol use alongside clinic attendance and HIV viral load measurements. We also considered other factors that might influence health, such as age, sex and medical history, to better understand the independent effects of smoking and alcohol use.

People who reported unhealthy alcohol use were more likely to experience interruptions in their HIV care and were less likely to achieve viral suppression than people who drank at lower-risk levels. Smoking was also associated with poorer HIV care outcomes, although these associations were generally weaker than those seen for unhealthy alcohol use. The findings suggest that lifestyle factors and HIV care are closely connected and that some people may face multiple challenges that make staying engaged in treatment more difficult.

Regular HIV care and consistent treatment are essential for maintaining good health and preventing HIV transmission. This study highlights that supporting people to reduce harmful alcohol use and stop smoking could have benefits beyond improving general health—it may also help people remain engaged in HIV care and achieve better treatment outcomes. The findings support a more holistic approach to HIV care, where services address physical health, mental wellbeing and lifestyle factors together.

Projecting changes in demographics and causes of death in people with HIV in western Europe from 2025 to 2050: a mathematical modelling study

Advances in HIV treatment mean that people with HIV are living much longer than in previous decades. As the population of people living with HIV ages, their healthcare needs are also changing. This study used mathematical modelling to estimate how the age of the population with HIV and their causes of death may change in Western Europe over the next 25 years.

We used information from the ART-CC's Western European cohorts to develop a mathematical model of the population living with HIV in Western Europe. We projected changes in age, life expectancy and causes of death from 2025 to 2050, taking into account improvements in HIV treatment and current trends in health and survival.

The model predicts that the population of people living with HIV in Western Europe will continue to become older over the coming decades. As HIV treatment remains highly effective, fewer deaths are expected to be directly related to AIDS. Instead, conditions that become more common with ageing—such as cardiovascular disease, cancer and other long-term illnesses—are expected to account for an increasing proportion of deaths. This reflects the success of HIV treatment but also highlights new healthcare challenges.

These findings suggest that HIV services will increasingly need to focus on healthy ageing as well as HIV treatment. Preventing and managing conditions such as heart disease, cancer and other chronic illnesses will become an increasingly important part of HIV care. The study can help healthcare providers and policymakers plan services that meet the changing needs of an ageing HIV population over the coming decades.

Discrimination of the Veterans Aging Cohort Study Index 2.0 for predicting cause-specific mortality among persons with HIV in Europe and North America

As people with HIV are living longer, doctors need reliable ways to identify those at higher risk of serious illness or death. The Veterans Aging Cohort Study (VACS) Index 2.0 combines information from routine clinical tests to estimate a person's overall health and risk of death. This study assessed how well the VACS Index 2.0 predicts different causes of death in people living with HIV in Europe and North America.

We analysed data on adults receiving HIV care across Europe and North America. We calculated each person's VACS Index 2.0 score using information routinely collected during clinic visits and compared these scores with deaths that occurred during follow-up, including deaths related to AIDS, cardiovascular disease, cancer and other causes.

The VACS Index 2.0 accurately identified people who were at higher risk of dying during follow-up and performed well across a range of different causes of death. People with higher scores were consistently more likely to die than those with lower scores. The findings suggest that the index provides a useful overall picture of health by combining information about HIV, kidney function, liver function, blood tests and age, rather than relying on HIV-related measures alone.

This study shows that the VACS Index 2.0 could help healthcare professionals identify people who may benefit from closer monitoring or additional support. Because it uses information that is already collected during routine HIV care, it could be a practical tool for improving long-term care planning. As people with HIV continue to live longer, tools like this may help clinicians recognise health problems earlier and provide more personalised care that addresses both HIV and other long-term conditions.

Care interruptions and mortality among adults in Europe and North America: a collaborative analysis of cohort studies

Modern HIV treatment works very well when it is taken consistently and people attend regular healthcare appointments. However, some people experience interruptions in their HIV care, which may delay treatment, reduce monitoring and increase the risk of poor health. This study investigated whether gaps in HIV care were linked to a higher risk of death among adults receiving HIV care in Europe and North America.

We identified people who had interruptions in their HIV care, based on long gaps between clinic visits, and compared their risk of death with people who remained engaged in regular care. The analysis also took account of differences such as age, sex, HIV treatment and overall health.

People who experienced interruptions in HIV care had a higher risk of death than those who attended care regularly. The longer the interruption, the greater the increase in risk. Although some people returned to care after an interruption, the findings suggest that even temporary gaps in care can have important consequences for long-term health. People who miss appointments often face wider challenges, such as mental health difficulties, housing instability or substance use, which may contribute to poorer health outcomes.

The study highlights the importance of helping people remain connected to HIV care throughout their lives. Preventing interruptions in care, making it easier to return after a gap, and providing support for the wider challenges that people may face could improve health and reduce avoidable deaths. The findings emphasise that HIV care is most effective when people can access services consistently over the long term.

Estimation of improvements in mortality in Spectrum among adults with HIV receiving antiretroviral therapy in high-income countries

Spectrum is a mathematical model used around the world to estimate the number of people living with HIV and to predict future health outcomes. To remain accurate, the model needs up-to-date information about how long people with HIV are living now that treatment has improved considerably. This study aimed to update the mortality estimates used in Spectrum using data from people receiving HIV treatment in high-income countries.

We analysed information from people with HIV in Europe and North America and examined changes in death rates among adults receiving antiretroviral therapy over time and used these findings to develop improved mortality estimates for the Spectrum model.

The study showed that survival for people receiving HIV treatment has continued to improve over recent years. Death rates were lower than those assumed in earlier versions of the Spectrum model, particularly among people who started treatment early and maintained good control of their HIV. Updating the model with these more recent data provides a more accurate picture of long-term survival in high-income settings.

Reliable models are essential for planning HIV services, estimating future healthcare needs and monitoring progress towards global HIV targets. By incorporating more recent survival data, Spectrum can provide more accurate estimates for researchers, healthcare providers and policymakers. The findings also reflect the major improvements in HIV treatment, showing that many people who receive effective care can now expect to live much longer than was possible in the past.

Longitudinal trends in causes of death among adults with HIV in Europe and North America on antiretroviral therapy from 1996 to 2020: a collaboration of cohort studies

The introduction of effective antiretroviral therapy has transformed HIV from a life-threatening infection into a long-term manageable condition for many people. As people with HIV live longer, the reasons why they die have also changed. This study examined how causes of death among adults receiving HIV treatment have changed over more than two decades in Europe and North America.

We combined information on adults who received antiretroviral therapy between 1996 and 2020. We classified the causes of death into groups, including AIDS-related illnesses, cancers, cardiovascular disease, liver disease and other non-AIDS conditions, and examined how these patterns changed over time.

The study found a substantial decline in deaths caused by AIDS over the 25-year study period, reflecting major advances in HIV treatment and earlier diagnosis. As fewer people died from AIDS-related illnesses, non-AIDS conditions accounted for an increasing proportion of deaths. These included cancers, cardiovascular disease and other long-term health conditions that become more common with ageing. Despite these changes, overall survival improved considerably throughout the study period.

This research demonstrates the remarkable progress made in HIV treatment over the past three decades. Today, preventing and managing long-term health conditions has become an increasingly important part of HIV care. The findings highlight the need for healthcare services to support healthy ageing, including screening for cancer, managing heart disease risk, supporting smoking cessation and promoting healthy lifestyles alongside effective HIV treatment. As people with HIV continue to live longer, healthcare systems will need to address both HIV and the broader health needs associated with ageing. 

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