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.
Ahead of Almedalen 2024: Hiv-Sweden presents 8 action points in new program
Ahead of Almedalen 2024, HIV Sweden is launching a new action program. The program is aimed at decision-makers and politicians, and aims to strengthen people living with HIV, get closer to the goals of Agenda2030 and create action on issues related to HIV.
"Our hope is that the program and our participation at Almedalen will lead to an increase in knowledge about HIV in politics, and that we will ultimately see a more modern and active HIV policy, both regionally and nationally." says Emanuel Karlström, Strategist at Hiv-Sverige.
In addition to the action program, HIV-Sweden will offer a quiz where visitors can test their knowledge and attitudes towards HIV and people living with HIV. The quiz and HIV testing will be available in the Hiv-Sweden tent on site 207 in Almedalen.
Hiv-Sverige participates together with the member organizations Positiva Gruppen Syd, Positiva Gruppen Väst and Convictus in Almedalen between 24 June - 1 July under the slogan "Hiva fördomarna".
See the action plan in full here.
Hiv-Sverige raises HIV with EU candidates, party leaders and MPs at Järvaveckan 2024
Jonas Sjöstedt (V) was one of the politicians asked about HIV and living with HIV at Järvaveckan.
Järvaveckan, which this year was organized at Spånga Idrottsplats in northern Stockholm between 29 May and 1 June, attracted a large number of visitors and several influential politicians. Hiv-Sverige was present and took the opportunity to conduct a series of interviews and conversations with, among others, Magdalena Andersson (S), Jonas Sjöstedt (V), Arba Kokalari (M) and Annika Hirvonen (MP).
Watch the video and a summary of the interviews here
The conversations focused on raising the profile of HIV and creating awareness of the specific challenges faced by people living with HIV in Swedish society. Health care and stigmatization of people living with HIV were two examples of issues that were given extra space and where politicians had the chance to tell us what we can do to move forward.
Although societal issues such as national security, democracy and gang crime dominated the discussions at Järvaveckan, Hiv-Sverige used the event to highlight how HIV issues are affected by political decisions.
- It is critical that we engage decision-makers in order to create an active and up-to-date HIV policy. In addition to the HIV stigma that stubbornly persists, we face major challenges in relation to, for example, co-morbidity, where the level of ambition must be raised in Sweden, explains Emanuel Karlström, strategist at Hiv-Sverige.
The purpose of HIV Sweden's presence during Järvaveckan was to put HIV back on the political agenda and raise awareness among decision-makers.
HIV in a new era - new report on changing care needs, costs and co-morbidities
Today, May 28, Hiv-Sweden publishes the report "HIV in a new era". The report is released in connection with the webinar "Are we ready? Comorbidities, health economics and the future needs of people living with HIV" and aims to highlight aspects of the changing care needs of people living with HIV and the new cost structure that is taking shape as a result.
The report's foreword reads:
"Healthcare is a high priority issue in Sweden. Accessibility, waiting times and costs are aspects that often appear in the debate about the health care system. For people living with HIV, well-functioning care is a prerequisite for good health and a good life. At the same time, several trends can be discerned in the 40-year history of HIV, from palliative care to the current designation of HIV as a chronic, treatable disease. With the changing care needs of people living with HIV, we are in the midst of an ongoing paradigm shift with demands to adapt care and resource allocation. Of the principles of the Health Care Act (1982:763), debates and discussions on HIV care include arguments that lean towards the principle of human dignity as well as the principles of need and solidarity. There is now a relatively rich body of material describing the consequences of an HIV diagnosis for the individual. The authorities as well as academia and civil society have published reports on the life situation of people living with HIV, and the needs and challenges that patients face with their diagnosis. However, the principle of cost-effectiveness seems to be rarely touched upon. To avoid co-morbidity, increasing costs and improving the quality of life of people living with HIV, cost-effectiveness should be given more attention.
A reasonable question is whether we in civil society should highlight cost-effectiveness ourselves. Is it to be true to our target groups and our function in relation to other actors?
We lean towards a yes, by highlighting challenges and which interventions have an effect, we can point out what makes a difference and contributes to better health and quality of life. The fact that healthcare costs and must cost is reasonable given our economic prosperity, but we need to ask ourselves whether resources for the interventions that exist today can be used in other ways. Ultimately, this is what also affects the health and quality of life of people living with HIV.
This report therefore aims to answer these questions:
What is the cost of co-morbidity in people living with HIV? How can we better prevent, detect and treat co-morbidities?
The report is based on a literature review of studies in the area of health care costs for people living with HIV, with a focus on Sweden and Denmark. The choice of Nordic countries is based on the design of health systems, HIV prevalence, demographic composition and health of the population, and available published research. Some references are also made to research from other countries."
Download the report here
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