General principles and background
Since the introduction of antiretroviral treatment, the life expectancy of people living with HIV has increased significantly to levels that are equal to the expectancy of the general population, at least in countries like Belgium where optimal treatment and access to the treatment is available.
The quality and safety of the treatment have improved during the last decade compared to the earlier treatments since halfway 1995. Considerable progress has been made in achieving the original UNAIDS 90-90-90 targets; Belgium is now embracing the 95-95-95 targets. This medical progress equally improved the quality of life of people living with HIV. However, people living with HIV continue to face difficulties to reach and maintain a good quality of life, in particular those with a recent diagnosis and those ageing with HIV.
Receiving the HIV diagnosis remains a challenge in several regards and generally includes a period of personal crisis. Yet the long-term survivors often are confronted with multiple co-morbidities and as such healthy ageing entails specific needs. In this view, there are increasing calls to shift attention to quality of life of people living with HIV and to add a 4th target to the UNAIDS goals ‘beyond viral load’, which indicates that being virally suppressed is not the endpoint1.
So far, there is no consensus definition of what constitutes quality of life for people living with HIV2, nevertheless several studies indicate the main associated factors3. In addition to clinical factors such as viral load, medication side effects, drug interactions and co-morbidities, other physical and mental factors such as sleeping quality, healthy lifestyles, anxiety, depression are to be considered. Finally, social support, experiences of stigma and discrimination, socio-economic and legal factors need to be addressed to achieve and maintain a good quality of life. A recent survey on quality of life of people living with HIV in Flanders (N=505) revealed that 26% was ever diagnosed with a depression, 43% had weak social support, 41% indicated stigma as the main barrier to living well with HIV, and 65% ever experienced discrimination due to HIV4.
The quality of life pillar proposes and supports initiatives that improve the quality of life, including healthy lifestyles and a healthy sexual life, of people living with HIV. The connection with other pillars and the Positive Council within the HIV plan is obvious: people that receive optimal treatment and are retained within care, will also have higher chances for a good health. Good psychological support will help to better cope with HIV. Optimal treatment also makes people living with HIV less likely to transmit HIV, which supports a better sexual life and reduces the stigma of people living with HIV.
Those people living with HIV living in vulnerable conditions, such as migrants, asylum seekers, transgender people and people who inject drugs, still face higher risks of suboptimal treatment and care due to multiple barriers. The quality of life pillar invests in ameliorating the situation of those in need, not only by supporting them individually, but also by advocating for structural and legal changes that will ensure equal access to care.
Care and support within – but also outside – the clinical setting are fundamental for a good physical and mental health. Continued efforts are needed to avoid and prevent mental health problems, as well as to adopt a healthier lifestyle, considering for example the elevated use of tobacco, alcohol and drugs by people living with HIV. Hence it is crucial to optimally link support in between these settings. Training and capacity building of community health workers contributes to a better support of people living with HIV and helps them to better cope with their status. A variety of initiatives may be envisaged including thematic information sessions, peer support weekends, development of educational materials for people living with HIV, culturally adapted information for migrants.
Stigma and discrimination remain an important barrier for the quality of life of people living with HIV. According to the survey in Flanders, stigma was strongly related to negative self-image, coping with HIV and social support. Nearly half experienced internalised stigma (self-stigma) that withholds them for example from engaging in a relationship. Discrimination is reported most frequently with new (sex) partners, but also one in three encountered discrimination in general healthcare. Support is expected from those living nearby the people living with HIV, such as partners, relatives and friends but also from health care providers, employers, other service providers and peers. Tackling stigma within society at large, but also within the healthcare sector, as well as self-stigma, are therefore priorities within the quality of life pillar.
Finally, structural barriers and discriminatory measures that obstruct an active participation in society, such as restrictions to access insurance, housing and employment must be addressed. In line with other chronic diseases, efforts should be made to facilitate optimal (re-)integration in society, particularly in the working environment and with attention to the needs and capacities of those involved.
Objective
The objective of the quality of life pillar is to guarantee that all people living with HIV are able to achieve an optimal quality of life, including mental health and social support, within an environment that is free from stigma and discrimination in all aspects of their daily life.
Scope
The quality of life pillar aims at improving the overall quality of life of people living with HIV throughout their lifespan, with specific focus on the reduction of stigma and discrimination, removing barriers to access support and care services, vulnerable populations, healthy lifestyles, sexual health and (mental) wellbeing. This to meet the full needs of people living with HIV and a good health-related QoL.
Involved competencies
The responsibilities and competencies involved to ensure the quality of life of people living with HIV are mainly located within the regional health authorities as they concern prevention and wellbeing.
The fight against discrimination amongst other in the workplace, school, housing requires a cooperation between the federal government and the regional authorities for equal opportunities.
The fight against discrimination in the field of insurance - requires a cooperation between the federal authority for public health and the federal authority for economic affairs, in particular consumer protection.
Work is an important guarantee against poverty and promotes social welfare. The policy of return to the labour market and socio-professional reintegration is the result of the joint efforts of the federal authority for social affairs and the federal authority for employment and labour.
Priorities
Through a participatory process, people living with HIV and relevant stakeholders in the field agreed on the following priority areas and actions.
Priority area 1: Empower people living with HIV to make healthy lifestyle choices, enjoy a healthy (sexual) life and assert their rights
1.1 Improve the knowledge and awareness of people living with HIV on TasP, U=U, vaccinations, management of HIV and related comorbidities
1.2 Update, develop and implement informative and educational tools for people living with HIV, with a special focus on healthy lifestyle including impact of drug use, smoking cessation and physical exercise
1.3 Develop and implement initiatives addressing mental health and emotional wellbeing for people living with HIV with a special focus on the needs of an ageing population
1.4Develop and implement initiatives that assist people living with HIV to cope with HIV, challenge (self-) stigma and discrimination, and build resilience
1.5 Increase the social support of people living with HIV through contact with peer groups and the enlargement of social networks
1.6 Enable people living with HIV, regardless of their administrative status, to take legal action against discriminatory treatment
Priority area 2: Ensure that health care providers, community health workers and patient organisations are sensitive and responsive to the needs of people living with HIV
2.1 Increase the knowledge and awareness of the care providers to deliver appropriate services that address the care and support needs of people living with HIV, particularly those in greater vulnerability
2.2 Define, in collaboration with all stakeholders including people living with HIV, a pathway of integrated care and support to improve physical and mental health of people living with HIV within an holistic approach
2.3 Support the capacity and role of community workers and patient organisations to provide education, prevention, support and advocacy services to people living with HIV
2.4 Review and streamline referral pathways, particularly those to support services outside the clinical settings, proposed by health care providers and community workers so that they reflect the needs and choices of people living with HIV
2.5 Increase the knowledge and awareness of healthcare providers in non-HIV-specific care settings so that they provide general health care services to people living with HIV free from stigma and discrimination
2.6 Reduce barriers and improve preparedness of retirement homes and other residential services to adequately respond to the specific needs of people living with HIV within these settings
Priority area 3: Ascertain that all people living with HIV achieve an optimal quality of life, free from stigma and discrimination
3.1 Promote a non-discriminatory environment for people living with HIV through informative and educational initiatives that normalize HIV and reduce stigma in society
3.2 Strengthen advocacy for non-discriminatory legislation and policies with regard to people living with HIV, particularly in the domains of access to care, employment, insurance, and housing
3.3 Report and challenge laws and policies that contain a discrimination of people living with HIV
3.4 Develop and implement initiatives that reduce structural stigma and discrimination and minimise the impact on people’s health seeking behaviour and health outcomes
3.5 Enlarge the scope of the Law from the 4th of April 2019 so that people living with HIV are covered by “the right to be forgotten” in the context of certain insurance contracts
3.6 Ensure an enabling environment to facilitate, as for other chronic disease patients, the (re-)integration of people living with HIV in the working environment through programs such as weeraandeslag.be / jeveuxreprendre.be
3.7 Continue the fight against the criminalisation of HIV transmission by normalising HIV and disseminating the increasing evidence of TasP and U=U
3.8 Evaluate health-related quality of life and well-being of people living with HIV based on validated and sustainable assessment tools implemented within the HRC practice
------------------------------------------------------------
1 Lazarus, J., Safreed-Harmon, K., Barton, S., Costagliola, D., Dedes, N., del Amo Valero, J., Gatell, J., Baptista-Leite, R., Mendão, L., Porter, K., Vella, S. & Rockstroh, J. (2016). Beyond viral suppression of HIV – the new quality of life frontier. BMC Medicine, 14:94.
2 Cooper, V., Clatworthy, J., Harding, R., Whetham, J. & Emerge Consortium (2017). Measuring quality of life among people living with HIV: a systematic review of reviews. Health and Quality of Life Outcomes, 15:220.
3 Degroote, S., Vogelaers, D. & Vandijck, D. (2014). What determines health-related quality of life among people living with HIV: an updated review of the literature. Archives of Public Health 72:40.
4 Scheerder, G., Van den Eynde, S., Reyntiens, P., Koeck, R., Deblonde, J., Ddungu, D., Florence, E., Joosten, C., Van Wijngaerden, E. & Dewaele, A. (2019). Quality of life in people living with HIV: a regional survey in Flanders. Poster presented at the 17th European AIDS Conference (EACS), Basel.