Ageing with HIV – The Glasgow Manifesto: A Platform for Change

Why?

Advances in the treatment of HIV, through highly effective antiretroviral therapy (ART) have led to longer life spans, resulting in many more people ageing with HIV [1]. Data from the Italian ICONA cohort has estimated that by 2035, 76% of people living with HIV followed up in clinical centres will be aged >50 (26% >65) with 89% experiencing at least one comorbidity, resulting in doubling of estimated costs for the treatment of comorbidities [2] and it is reasonable to expect that the same will be true in other European countries [3]. This is not just a demographic change; indeed, it requires a radical change in clinical approach and poses a challenge for the social-welfare system.

At the AIDS Conference in Montréal in 2022, a group of organisations including EATG, set up the Silver Zone: a networking zone for older people living with HIV in the Global Village – A dedicated space with three days of sessions and sharing experiences with people from all over the world.

Following the experience of the Silver Zone in Montréal, several of the organising partners agreed on the importance of maintaining the momentum in the follow-up to the conference.

In 2022 and 2023, representatives from REALIZE Canada, EATG, NATAP and UTOPIA_BXL drafted the Glasgow Manifesto based on the priorities identified at the Silver Zone to reach a broader audience.

The Glasgow Manifesto calls for tailored care, holistic care, access to care and safe ageing care for older and ageing people living with HIV. It addresses the importance of quality of life intended as dignity and the expectation that sexual health is considered a vital part of people’s overall health. It advocates for the respect of people’s living expertise and for age-affirming community responses.

The Glasgow Manifesto demands healthy living conditions and implores policy makers to respond to the unmet needs of ageing and older adults in their area who struggle to afford adequate housing, food and/or other resources for health because of HIV-related disability. The recommendations of the Manifesto are also in relation to targeted research and education and meaningful involvement of older and ageing people living with HIV in their health and social care and in the global HIV response.

By the time of the official “launch” of the Manifesto at the Glasgow Conference 2022, over 130 organisations from every continent had endorsed it, which shows the great interest on the issues highlighted in the Manifesto and on the urgency of action needed.

In February 2023, a survey was launched among the various endorsing stakeholders and organisations aimed at capturing various aspects, such as the need for information/learning/education to rate the diverse topics. The five topics included comorbidities, mental health, cognitive health, loneliness, and social isolation, but also the need for advocacy and policy change.

Current HIV policy was not conceived with ageing in mind; however, living long term with HIV has created its own specific needs. The policy environment must adapt to recognise, measure, and address these needs.

 

What?

The project aims to enhance understanding of the unmet needs of people ageing with HIV across countries and ways to address them. It will build consensus on measures to be taken at healthcare systems and providers levels. The project will review the implementation of policies and programmes compared to the recommendations contained in the Glasgow Manifesto. It will collect good practices and innovative interventions. It will then also identify knowledge gaps requiring further research. It will foster consensus by building follow-up plans in close consultations with stakeholders.

 

With whom?

The project addresses community workers, healthcare providers, policy and decision-makers, health and social care providers at the local, regional or international level in the WHO Europe context.

 

How?

Project activities are:

• A review of national policies and programmes in 5-6 WHO European countries addressing key issues of people living and ageing with HIV with a focus on stigma, mental health, ageism, and prevention, management and treatment of comorbidities and other age-related health conditions.
• Collection of good practices that could be adapted to other settings.
• A research report highlighting with recommendations and national action plans to inform a reform process to improve HRQoL of people living with HIV.
• Stakeholders’ consultation in research and in the formulation of national recommendations.
• Presentation of the research findings at the HIV Glasgow Conference 2024 and related call to action and at other various European health policy events.
• Up to 3 local stakeholders’ dialogue meetings to discuss the recommendations with stakeholders, with possible national action plans and clear follow-up by relevant stakeholders.

 

For what outcome?

The short-term expected outcomes of the project are:

• Consolidation and generation of new knowledge and enhanced understanding of the meaning of HRQoL as experienced by older and ageing people living with HIV and awareness of the disparities in health outcomes as experienced by different key populations ageing with HIV.
• Standardisation and improvements of measurement tools used in clinical settings to evaluate HRQoL as experienced by older and ageing people living with HIV.
• Identification of barriers to translation of the asks of the Glasgow Manifesto into practice, guidelines, and policy, and development of strategies for addressing these
• Examination of ethical, financial, and political considerations of not incorporating the key points raised by the Glasgow Manifesto into practice and potential iatrogenic damages for older and ageing people living with HIV.
• Raised awareness of the unmet needs of older and ageing people living with HIV across professions, disciplines, sectors, patients’ groups, and in the public, at a European and national level.

 

The long-term outcomes of the project are:

• Routine analysis of the unmet needs of older and ageing people living with HIV in scientific studies and specific research in more underexplored areas so to support and update relevant policies.
• Growing awareness and understanding of the unmet needs of older and ageing people living with HIV among health professionals and policy makers via the scientific and lay literature, conferences, outreach activities by more ‘aware’ patient interest groups.
• Assessing progress of policy made against a pre-established scorecard.
• Advanced discussions on introducing specific clinical guidelines, public recommendations, and policy with learned societies, patient interest groups, and policy makers with the objectives of personalised medicine, improved health outcomes for older and ageing people living with HIV and ensuring quality.
• More targeted calls from public and private funding bodies to fuel more ageing with HIV specific research.

 

References

[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8685789/

[2] d’Arminio Monforte, A., Diaz‐Cuervo, H., De Luca, A., Maggiolo, F., Cingolani, A., Bonora, S., … & Sciandra, M. (2019). Evolution of major non‐HIV‐related comorbidities in HIV‐infected patients in the Italian Cohort of Individuals, Naïve for Antiretrovirals (ICONA) Foundation Study cohort in the period 2004–2014. HIV medicine, 20(2), 99-109. doi: 10.1111/hiv.12683. Epub 2018 Nov 21. PMID: 30461158.

[3] Grosso, T. M., Hernández-Sánchez, D., Dragovic, G., Vasilyeva, M., Saumoy, M., Blanco, J. R., … & Negredo, E. (2023). Identifying the needs of older people living with HIV (≥ 50 years old) from multiple centres over the world: a descriptive analysis. AIDS Research and Therapy, 20(1), 1-10. https://doi.org/10.1186/s12981-022-00488-7

 

EATG contact person(s) :	Nataliia Gerasymchuk – nataliia.gerasymchuk@eatg.org
Duration of the project/initiative:	April 2024 – November 2025
Project/Initiative Leader :	European AIDS Treatment Group (EATG)
Budget :	tba
Main Funding Sources :	Merck Sharp and Dohme (MSD)
Links :	N/A
Communication Disclaimer :	The Ageing with HIV – The Glasgow Manifesto: A Platform for Change project has been developed by the EATG, and was supported through a grant from Merck Sharp & Dohme LLC. EATG acknowledges that the sponsors had no control or input into the structure or the content of the project.

---

The Glasgow Manifesto by the International Coalition of Older People with HIV (iCOPe HIV)

Recommendations: The Glasgow Manifesto | Advocating Policy Change for People Ageing with HIV | An Analysis of Policy Framework and Recommendations in 7 WHO Europe Countries