5 news from the AIDS 2024 Conference - Focus on Europe
News, research and activism were mixed at the AIDS 2024 conference, which took place this year in Munich from July 22 to 26. The conference offered a wealth of new knowledge and information, presented in the form of lectures, workshops and press releases. HIV-Sweden was on site to collect and document new knowledge. We have gathered five news items that were presented during the conference.
Reduced stigma and discrimination for people living with HIV in Portugal - but challenges remain
Through a collaboration between civil society organizations, government agencies and universities, stigma and discrimination, using the People Living with HIV Stigma Index, has been investigated in Portugal. The People Living with HIV Stigma Index is a tool and a survey to capture the experiences of people living with HIV, in relation to stigma and discrimination. This study focused on four themes: experiences of stigma and discrimination, self-stigma and internalized discrimination, contact with health services and human rights.
Already in 2013, a first survey was conducted, a follow-up was then done in the years 2021-2022. In 2013, 1062 people living with HIV responded and in 2021-2022, 1095 people living with HIV responded, in total about 50,000 people living with HIV in Portugal. The proportion of men, women and transgender respondents was about the same for both surveys. Most respondents were men, around 35% were women and 1-2% identified as trans.
The results show that self-stigma and internalized discrimination have decreased over time, including fewer people isolating themselves from family, friends and social activities. Also in relation to shame, fewer people feel ashamed of their positive HIV status, although the proportion of people who choose not to have sex because of their HIV status remains unchanged (17%). In relation to contact with health care and human rights, the situation has improved on several points. Overall, the study shows a positive trend, but despite the improvement, around 30% still report feelings of guilt and shame in relation to living with HIV.
Quality of life among people living with HIV in Belgium - acceptance crucial for good quality of life
The Institute of Tropical Medicine (IMT) in Antwerp has studied people living with HIV who receive care in Antwerp, and how they view their quality of life. The researchers used questions and questionnaires to measure HIV, health and quality of life over the period 2016 to 2023. The study has data on a total of 1,068 people, of whom 470 were followed up at the end of the study. 92% of the participants had no symptoms of their HIV and just over 50% felt in good health, while just under 19% considered themselves to be ill.
The quality of life among participants was found to be good overall. Overall, 76% felt that they had a very good quality of life. However, people born outside Europe reported a slightly lower quality of life, resulting in 69% in that group experiencing a very good quality of life. People born outside Europe also reported more perceived HIV stigma, financial worries and lack of access to information.
Factors that had a large negative impact on quality of life among all participants were anxiety and depression, satisfaction with their sex life and quality of sleep, but the single most important factor in relation to quality of life among people living with HIV was acceptance. Participants who had a high level of acceptance of their HIV status also largely experienced a better quality of life.
The results of the study show that while quality of life has improved over time, the improvements are relatively small.
Major survey on well-treated HIV and infectiousness in Greece, Austria and Switzerland - lack of public awareness
Awareness of u=u and the knowledge that HIV cannot be transmitted from people living with HIV who are on well-controlled treatment varies. To find out how well the public in Greece, Austria and Switzerland know about u=u and its meaning, a group of researchers, supported by a pharmaceutical company, conducted a survey. In Austria and Switzerland, around 1,000 randomly selected people from each country responded and in Greece 2,000 people responded. The respondents' background, age, education, gender and place of residence varied.
A majority of respondents from all three countries said they were well or fairly well informed about HIV. Despite this, responses showed gaps in knowledge about HIV. 22% in Austria, 36% in Greece and 31% in Switzerland stated that HIV can be transmitted through kissing. A majority in all three countries also stated that unprotected sex with a person living with HIV who is on well-controlled treatment can lead to HIV transmission. Only one in five in Greece and Switzerland, and one in four in Austria, agreed with the statement that people living with HIV who are on well-controlled treatment cannot transmit HIV sexually to others. A majority of respondents in Austria and Switzerland would not want to, or be bothered by, marrying or entering into a sexual relationship with a person living with HIV (this question was not asked in Greece).
Compared across countries, knowledge and attitudes in Greece were slightly lower than in Austria and Switzerland. Young people, urban dwellers and people with higher levels of education generally had more knowledge about HIV and better attitudes towards people living with HIV. In particular, the difference was large in relation to education level and those with a high school diploma or experience of studying at university.
Lenacapavir - how do patients and healthcare professionals view long-acting treatment?
Lenacapavir is a long-acting antiviral HIV medicine that was approved for use in Europe in 2022. It is unique in that it only needs to be taken twice a year, by injection. To better understand the barriers and benefits of using Lenacapavir, people who provide care to people living with HIV and people living with HIV were interviewed. Kate Alford and the other researchers recruited 34 people living with HIV from different backgrounds and 14 nurses working in HIV care.
In the group of people living with HIV, 88% responded that they would be interested in switching to a two-injection-per-year regimen. Benefits included not having to worry about taking their medication every day, not having to worry about forgetting to take medication and generally a more carefree life. However, side effects and not being able to switch back to their old medication were perceived as potential barriers to switching to Lenacapavir. Although it was possible to take the injections themselves, most people living with HIV wanted to enlist the help of health professionals in injecting the medication.
One of the participants put it this way: "It would stop me worrying for six months, I would know I have got the injection, so I don't need to worry anymore...I can get on with everything and just forget."
Healthcare professionals raised concerns about developing resistance if doses are missed, in that currently a combination of both injections and taking tablets daily is needed to create a complete treatment. The ability to adjust work in clinics was also highlighted as a challenge. At the same time, healthcare professionals were excited and saw great potential with injections and being able to give injections with long-term effects in the future.
Easier for people living with HIV to serve in the military - Researchers, patient associations and experts behind change in France
On May 9, 2023, a decision was taken in France that makes it easier for people living with HIV to serve in the military, fire brigade and police (gendarmerie).
The background is the assessment scale, SIGYCOP, which is used to evaluate physical fitness for employment in, for example, the armed forces. The scale uses a scoring system where 1 means no limitations and 5 means incompatibility with service. Depending on a person's individual CD4 level and any symptoms of HIV infection, HIV has been ranked between 3-4 points (asymptomatic treated HIV infection) to 5 points (symptomatic HIV infection). The new decision simplifies the rating scale in relation to HIV and living with HIV is now considered a less serious complication which is lowered to 2 or 3 points depending on the individual's health status. The assessment is that the change will lead to more people living with HIV being able to serve, especially in the military.
The change is the result of several years of advocacy work, made possible by patient associations, researchers and HIV experts coming together. According to the parties involved, a key to success has been to argue with the help of new research and demands to update outdated regulations to harmonize with the current state of knowledge.
Several other countries have also updated their policies on people living with HIV and serving in the military, including the United States in 2022 and the United Kingdom in 2021.