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PRESS RELEASE
- for immediate release -
"Older people living with HIV cannot be
ignored and must NOT be left behind"
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Overlooked in global plans to end AIDS by 2030, a growing, International Coalition of Older People with HIV (iCOPe HIV) and allies have issued a wake-up call about serious gaps in the world's HIV response.
November 10, 2022
New York, New York, November 10, 2022 - During a session of the International Congress on Drug Therapy in HIV infection (HIV Glasgow 2022) on October 26, 2022, Mario Cascio of the European AIDS Treatment Group (EATG) stood up and read a prepared statement (known as the Glasgow Manifesto).
"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!"
(from the preamble to theGlasgow Manifesto)
Later, Cascio said, "As a person who has been living with HIV for almost 40 years now, I was pleased and honored to be the one launching the Glasgow Manifesto at HIV Glasgow 2022. It was like speaking to the world about us, giving voice to the great number of older people living with HIV worldwide, struggling in their daily lives and often neglected. It was indeed a great moment with great response coming from the audience."
The calls for action in the Manifesto, centering on three main themes - care, quality of life and empowerment - have emerged from experiences of marginalization, even within the HIV community. The founding members of iCOPe HIV (authors of the Manifesto) have been struggling for years to have concerns of older adults with HIV taken seriously. This year's International AIDS Conference in Montreal (AIDS 2022) (29 July - August 2, 2022) marked the first time a space for discussion of HIV and ageing issues (the Silver Zone) was approved - after earlier organizing efforts were denied.
Kate Murzin of Realize (Canada), one of the co-organizers of the Silver Zone, said, "the global community's slow response to the changing demographics of HIV has been frustrating and difficult to understand. In 2020, there were an estimated 7.5 million people over the age of 50 living with HIV around the world. Close to 40% of people with HIV who live in high income countries will be at least 60 years old within the decade. And by 2040, over 9 million people living with HIV in sub-Saharan Africa will be over 50. These aren't just numbers. They are people, organizers, community leaders, caregivers, and much more."
In the words of Axel Vanderperre of UTOPIA_BXL (Belgium), "I have the impression the 65+ group is forgotten, or at least there is no clinical pathway to respond to their many needs, whether physical, mental, emotional, social, or sexual. Visits to the clinic could be so much more effective if older people living with HIV were given the tools to share what's most important to them in advance of the appointment. The community also needs access to education and programs that enable us to take charge of our health - initiatives to prevent comorbidities and frailty, foster healthy behaviours, and reduce pain and mental health problems."
Jules Levin of the National AIDS Treatment Advocacy Project (USA) added, "we are calling for an integration of comprehensive geriatric screening, care and support services for the elderly and older people living with HIV into the HIV clinic infrastructure. We are calling for all governmental health officials to design and implement new models of care in the clinic for prevention and care of comorbidities. Without this, premature mortality will increase."
The authors of the Manifesto are clear that what is needed is not just improved care and quality of life. Cascio's colleague at EATG, Anton Basenko, stated, "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 demand access to the most up-to-date information on ageing with HIV. But knowledge, information and research are nothing if we are not meaningfully involved. 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. Stop talkenism - it's time to act!"
The coalition's calls to action have struck a chord with many people involved in the global fight against AIDS. According to Murzin, "since Mario delivered the Manifesto publicly on October 26, 118 HIV organizations around the world have signed-on - a groundswell of support we hope to translate into action and systemic change."
Read the full text of the Glasgow Manifesto, including the 10 Calls to Action.
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Contacts:
Anton Basenko or Mario Cascio
European AIDS Treatment Group (EATG)
Jules Levin
National AIDS Treatment Advocacy Project (NATAP)
Kate Murzin
Realize (Canada)
Axel Vanderperre
UTOPIA_BXL
About iCOPe HIV:
The International Coalition of Older People with HIV (iCOPe HIV) is a newly established network of people and organizations committed to improving care, optimizing quality of life, and fostering empowerment among ageing and elderly (age 65+) people living with HIV around the world. Its founding member organizations include the European AIDS Treatment Group (EATG), the National AIDS Treatment Advocacy Project (NATAP, USA), Realize (Canada) and UTOPIA_BXL (Belgium).
Quotes:
"If you want to advocate, to reach your goals and to make positive changes, you have to be empowered! Empowerment helps us building the partnerships and bridging the gaps, empowerment gives us motivation and sense of unity. We see empowerment in targeted research and education. 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 demand access to the most up-to-date information on ageing with HIV. But knowledge, information and research are nothing if we are not meaningfully involved. 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. Stop talkenism - it's time to act!"
Anton Basenko, European AIDS Treatment Group (EATG)
"Our HIV population is aging quickly yet care has not kept up with the needs of these older and elderly PLWH. Many suffer higher rates of heart disease and cognitive and physical impairments or disabilities among other comorbidities. Yet we do not have a care infrastructure that provides elder, geriatric screenings and care as we very much need. We are calling for an integration of comprehensive geriatric screening, care, and support services for the elderly and older PLWH into the HIV clinic infrastructure. We are calling for all governmental health officials to design and implement new models of care in the clinic for prevention and care of comorbidities. Without this, premature mortality will increase."
Jules Levin, National AIDS Treatment Advocacy Project (NATAP)
"Here in Europe, USA, and other parts of the world for the HIV elderly over 65, rates of cognitive impairment and physical impairment or disabilities are high. Elderly or older people living with HIV I know walk with difficulties, cannot function well, have problems in relationships - because of cognitive and physical decline and disability. The studies show people living with HIV contract comorbidities 10 to 15 years earlier, on average, than the general population and several recent studies show reduced lifespan and quality of life. It's worth noting, too, that women with HIV suffer more inflammation, earlier and more comorbidities, and greater reductions in quality of life and physical impairment."
Axel Vanderperre, UTOPIA_BXL
"As a person who has been living with HIV for almost 40 years now, I was pleased and honored to be the one launching the Glasgow Manifesto at HIV Glasgow 2022. It was like speaking to the world about us, giving voice to the great number of older people living with HIV worldwide, struggling in their daily lives and often neglected. It was indeed a great moment with great response coming from the audience." Mario Cascio, EATG
"Older people living with HIV shouldn't have to fear looking for support from an HIV organization, a seniors' centre or a retirement residence because of HIV stigma, ageism, or both. Service providers need to be knowledgeable about HIV and the impact of previous experiences of loss and discrimination on the needs of ageing and older people living with HIV today. Policy makers need to understand, too, that long-term consequences of living with HIV into older adulthood are poverty and limited caregiving support. These realities don't jive with the idea of ageing well with HIV."
Kate Murzin, Realize
"I have the impression the 65+ group is forgotten, or at least there is no clinical pathway to respond to their many needs, whether physical, mental, emotional, social, or sexual. Visits to the clinic could be so much more effective if older people living with HIV were given the tools to share what's most important to them in advance of the appointment. The community also needs access to education and programs that enable us to take charge of our health - initiatives to prevent comorbidities and frailty, foster healthy behaviours, and reduce pain and mental health problems."
Axel Vanderperre, UTOPIA_BXL
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