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

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PREAMBLE

At AIDS 2022 in Montreal, Canada, we – ageing and older adults living with HIV, long-term survivors of HIV/AIDS, and our allies from around the world – gathered in The Silver Zone, the first-ever global village networking zone to hold dedicated space for us. Our 6-year struggle for visibility within the International AIDS Conference is representative of the challenges we face every day to have our living expertise acknowledged and our needs addressed by our peers living with HIV, our community-based organizations, our healthcare teams, our government officials, and global leaders in the HIV response.

Older people with HIV are NOT collateral damage to be left behind in the pursuit of “ending the HIVepidemic”.[1] We are a silent majority. In 2020, there were an estimated 7.5 million of us (age 50+) around the world.[2] Close to 40% of us who live in high-income settings will be at least 60 years old within the decade [3], and by 2040, over 9 million of us who live with HIV in sub-Saharan Africa will be over 50.[4] If we speak in unison, we cannot be ignored.

Our bodies, hearts, minds, and pocketbooks reveal scars earned building the modern HIV response. As we age, many of us are living with multiple chronic health conditions, coping with frailty, disability and/or cognitive changes, becoming more socially isolated, and experiencing ageism in addition to HIV stigma and other forms of discrimination. Our independence, quality of life, and longevity are compromised and yet the HIV response has not evolved with us. It is past time for us to assert our rights to health, dignity, and support!

Equitable health outcomes for ageing and older people living with HIV will only be possible if we work in collaboration. Those of us with lived experience and living expertise must be at the centre of any decision or action taken in response to our self-identified needs. We call on healthcare providers, researchers, community-based HIV organizations, frontline providers of ageing-related services, and policy- and decision-makers to work in partnership with us to fund and implement the following calls to action.

 

CALLS TO ACTION

We, ageing and older adults living with HIV, call for:

CARE

1. Tailored Work with us to develop new models of care for ageing and older people living with HIV that account for the health and social complexity we experience. At a minimum, this model should be multidisciplinary, integrated, proactive and preventive, and organized around our priorities. We need more time with our care providers

2.Wholistic We demand access to services and technologies that can help prevent and reduce the disabling impact of chronic illness, frailty, and cognitive changes (e.g., rehabilitation services, vision and hearing care, dentistry, mental health services, mobility/hearing/vision aids, cognitive supports, personal care, in-home support for activities of daily living, etc.) regardless of our ability to pay.

3.Access to care. We insist on low-barrier care and services, whether delivered in the clinic, community, or virtually. We have a right to reasonable accommodation.

4.Safe ageing care. We demand that individuals and organizations providing care and services to older adults be knowledgeable about HIV, the lived experiences of people living long-term with HIV, our distinct support needs as ageing persons living with HIV, and the impact of HIV Individuals and organizations providing HIV care and services should be similarly conscious and renounce ageism. Service providers require education on our clinical and social needs to support us better. We have the right to respectful, informed ageing care without discrimination.

QUALITY OF LIFE

5.We expect that our sexual health is considered a vital part of our overall health.

6.Respect for our living We are self-aware, take responsibility for our well-being and demonstrate great resilience, having developed effective strategies for maintaining wellness in the face of adversity. We want care providers and researchers to ask us about our quality of life, and to prioritize what we deem most important.

7.Age-affirming community We urge HIV organizations to address ageism within; work with us to develop responses that are relevant to our needs, including companionship and peer support; and foster intergenerational understanding and community-building.

8.Healthy living We demand that our right to an adequate standard of living and social protection, as guaranteed by the United Nations Convention on the Rights of Persons with Disabilities (Article 28) be realized. [5] We implore policy makers to respond to the unmet needs of ageing and older adults in their jurisdiction who struggle to afford adequate housing, food and/or other resources for health because of HIV-related disability.

EMPOWERMENT

9.Targeted research and We expect that ageing and older adults are represented in all HIV research and that people living with HIV are included in ageing research, so we are clear on what the findings mean for our well-being. We insist on more research focused on HIV, ageing and older adults that responds to our community-identified priorities. We demand access to the most up-to-date information on ageing with HIV to inform our decision-making, self care activities to prevent illness and maintain health, and planning for the future.

10.Meaningful involvement. We demand that ageing and older people be included in decision-making about the HIV response, including priority- and target-setting, funding allocation, and messaging about the impact of HIV on ageing and older adults.

 

We – ageing and older people living with HIV – are not a homogenous group between nor within countries around the globe, so we expect these CALLS TO ACTION to be implemented in ways that are equitable and account for intersectionality. We all deserve age-friendly and age-affirming information, care, services, and support that considers the impact of our HIV status, gender identity, sexual orientation, citizenship, ability, race, ethnicity, and place of residence, among other factors.

 

It is with great urgency that we, the International Coalition of Older People with HIV (iCOPe HIV), implore all stakeholders to work with us to implement these CALLS TO ACTION without further delay.

 

Glasgow Manifesto Endorsements (as at Nov 4, 2022)

 

  1. Access Care Treatment and Support Ghana (ACTS Ghana)
  2. Act for Involvement Sӑnӑtate şi Dezvoltare Comunitarӑ (AFI)
  3. Adhara, Centro Comunitario de VIH/Sida y otras ITS
  4. AGIHAS, atbalsta biedrība cilvēkiem, kuri dzīvo ar HIV
  5. AIDES
  6. AIDS Committee of Newfoundland & Labrador (ACNL)
  7. Albanian Association of People Living with HIV/AIDS
  8. Alberta Community Council on HIV (ACCH)
  9. Alliance for Public Health
  10. American Academy of HIV Medicine
  11. Amoru AIDS Support Community Initiative (ASCI)
  12. AND BOKK LIGUEYYE
  13. Anlaids Onlus
  14. Apoyo Positivo
  15. APVIENĪBA HIV.LV
  16. Arcobaleno AIDS ODV
  17. Associazione Solidarietà AIDS – Onlus (ASA)
  18. Association of Positive Ukrainians in Germany (PlusUkrDe)
  19. Associazione Radicale Certi Diritti APS
  20. Associazione TGenus
  21. Atlantic Interdisciplinary Research Network (AIRN)
  22. Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM)
  23. Australian Federation of AIDS Organizations
  24. Baltic Coalition for PLWHIV (BaCo)
  25. Black Women’s Learning Institute
  26. Brigstowe Local HIV Services
  27. Canadian International HIV and Rehabilitation Research Collaborative
  28. Canadian Positive People Network
  29. Center for HIV AIDS Integral Research
  30. Centre of Excellence for Research in AIDS, University of Malaya
  31. Centrul Comunitar PULS
  32. Česká Společnost AIDS Pomoc
  33. CEST – Centro persone trans e gender variant
  34. Chiva (UK)
  35. Coalition des organismes communautaires québécois de lutte contre le sida (COCQ-SIDA)
  36. Coalition HIV L’italia Ferma L’AIDS
  37. Coalition PLUS
  38. Communities, Alliances and Networks (CAAN)
  39. Community-Based Research Centre (CBRC)
  40. Correlation-European Harm Reduction Network (C-EHRN)
  41. Deutsche Aidshilfe
  42. Doherty Institute
  43. Дорога жизни Днепр
  44. Peter Centre
  45. East Europe & Central Asia Union of PLWH
  46. Eurasian Network of People Who Use Drugs (ENPUD)
  47. European AIDS Clinical Society
  48. European AIDS Treatment Group (EATG)
  49. Exæquo
  50. Fast-Track Cities
  51. Fight Infections Foundation
  52. Fondazione Lila Milano
  53. Fondazione The Bridge – scienza tra clinica e società
  54. The Food Chain
  55. Fundacion Huesped
  56. George House Trust
  57. Golden Compass Program
  58. Good Health Community Programme
  59. Grupo de Ativistas Em Tratamentos (GAT)
  60. Grupo de Trabajo Sobre Tratamientos del VIH
  61. Háttér Society
  62. HIV Justice Network
  63. HIV Legal Network / Réseau juridique VIH
  64. HIV Outcomes
  65. Housing Works
  66. International Association of Providers of AIDS Care (IAPAC)
  67. I ragazzi della panchina (Italy)
  68. Latino Commission on AIDS
  69. Lega Italiana Per La Lotta Contro L’AIDS
  70. Let’s Kick ASS
  71. Living Positive Victoria
  72. menZDRAV Foundation
  73. NADIR ETS
  74. Надія Та довра
  75. National AIDS Treatment Advocacy Program (NATAP)
  76. National Association of People with HIV Australia
  77. HOBA CIM’Я
  78. Network persone sieropositive (NPS Italia APS)
  79. Network persone sieropositive (NPS Sicilia ODV)
  80. NMAC leads with race
  81. Нүрсенім
  82. Ontario AIDS Network (OAN)
  83. ОФ «Answer», Казахстан
  84. Позитивные женщины
  85. Pacific AIDS Network (PAN)
  86. Palladium
  87. PARN
  88. Plateforme Prevention SIDA
  89. Plus – Persone LGBT+ sieropositive
  90. Plus Roma – Persone LGBT sieropositive
  91. Positive Action Foundation Philippines Incorporated (PAFPI)
  92. Positive Life NSW
  93. Positive Voice Greece
  94. Positively UK
  95. Queensland Positive People
  96. Realize/Réalise
  97. Red Ribbon Istanbul
  98. Rehabilitation in HIV Association
  99. ReShape/International HIV Partnerships
  100. RIGRA support foundation
  101. sage: Advocacy & Services for LGBTQ+ Elders
  102. Salem Health Project
  103. Sevilla Checkpoint
  104. ŠKUC
  105. Sociedad Española Interdisciplinaria del SIDA (SEISIDA)
  106. ТВɪй ДІм Зу рЕСурснͷй цЕНТР
  107. Terrence Higgins Trust
  108. Thorne Harbour Health
  109. Treatment Action Group (TAG)
  110. Ukrainian Network of People Who Use Drugs
  111. Ukrainian Network of Women who Use Drugs (UNWUD/ VONA)
  112. UNSW – Centre for Social Research in Health
  113. UTOPIA_BXL
  114. Vancouver Island PWA Society (VPWAS)
  115. Victorian HIV Service (Part of Alfred Health)
  116. Walking in These Shoes
  117. Waverley Care
  118. Yorkshire MESMAC

 

iCOPe HIV is an initiative of the four founding partners EATG (Europe), NATAP (USA), Realize (Canada) and UTOPIA_BXL (Belgium).

 

Endorsements of the Manifesto are added! Please find the latest version (January 2024) via Materials 


CONTACT

For more Information on the International Coalition of Older People with HIV (iCOPe HIV) or the Glasgow

Manifesto, contact:

 

Kate Murzin Realize (Canada)

 

Mario Cascio EATG

 

 

REFERENCES

1 UNAIDS Joint United Nations Programme on HIV/AIDS. 2015. Understanding Fast-Track: Accelerating Action to End the AIDS Epidemic by 2030.

2 Autenrieth CS, Beck EJ, Stelzle D, Mallouris C, Mahy M, Ghys P (2018) Global and regional trends of people living with HIV aged 50 and over: Estimates and projections for 2000–2020. PLoS ONE 13(11): e0207005.

3 Smit M, Brinkman K, Geerlings S, Smit C, Thyagarajan K, Sighem Av, de Wolf F, Hallett TB; ATHENA observational cohort. Future challenges for clinical care of an ageing population infected with HIV: a modelling study. Lancet Infect Dis. 2015 Jul;15(7):810-8.

4 Hontelez, J. A., de Vlas, S. J., Baltussen, R., Newell, M. L., Bakker, R., Tanser, F., Lurie, M., & Bärnighausen, T . (2012). The impact of antiretroviral treatment on the age composition of the HIV epidemic in sub- Saharan Africa. AIDS (London, England), 26 Suppl 1(0 1), S19–S30. https://doi.org/10.1097/QAD.0b013e3283558526

5 United Nations Convention on the Rights of Persons with Disabilities, December 13, 2006, https://www.ohchr.org/en/hrbodies/crpd/pages/conventionrightspersonswithdisabilities.aspx

 

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