Issue 27 September 2011
HIVUpdate Contents 1 2 3 3
Ageing with HIV 50 Plus – experiences of older people living with HIV Older and wiser A doctor’s perspective
4 4 4 4
People at IPPF: Shalina Azhar News in brief New publications Events and key dates
Ageing with HIV
More information on IPPF’s growing campaign is available at http://bit.ly/criminalization.
As people living with HIV grow older, they will have a unique set of clinical and psychosocial needs that need to be addressed in a more sustained and systematic manner. In the United Kingdom a recent study specifically investigated the needs, concerns and characteristics of people aged 50 and over who are living with HIV. Beyond health-related issues, the research under taken by Terence Higgins Trust highlights a number of other challenges including financial and social wellbeing (see page 2) that all HIV responses should increasingly take into consideration. Many questions related to how older age affects the natural
01
N D A Y
With increasing availability and options of effective antiretroviral treatment, people living with HIV are living longer and the population of people who are HIV positive is steadily growing older. Ageing is an inevitable process for us all, but what are the consequences of long-term HIV infection and treatment? The face of HIV has altered dramatically over the past decade. A combination of earlier diagnosis, ART treatment adherence, and awareness of healthier lifestyle options translates into a drastically increased life expectancy for many people living with HIV. Globally, many people have now been living with the virus for over twenty years – some because they were born with HIV and others because they are long term survivors of the epidemic. This unchartered territory raises many new and important issues about how long-term HIV infection and treatment affects the natural ageing process.
1 9 9 1 S U
progression of HIV infection and the body’s response to long term treatment still remain unanswered. Clinicians and health practitioners are increasingly confronted by additional issues – from managing the expected and routine issues facing the over 50s living with HIV to dealing with some of the consequences of long term ART use and resistance. It is clear that both providers and clients are entering a new phase in holistic health for people living with HIV. Dr. Ashraf Grimwood, a leading HIV clinician in South Africa provides his perspective on some of the key clinical considerations on ageing and HIV (see page
The Commonwealth comprises 30 per cent of the world’s population, yet over 60 per cent of all people living with HIV reside in these countries. In many of the countries within the Commonwealth punitive laws exist that criminalize HIV transmission, sex work, drug use or same-sex sexual acts that block effective and human rights-based responses to the epidemic. While some countries have introduced new HIV-specific legislation, many others have existing laws which are relics from the past. The Commonwealth Heads of Government Meeting provides an impetus to repeal these laws and create a protective and enabling environment for a more effective HIV response.
3), while Rachel Albone from HelpAge International gives her perspective on the ways to further support older people living with HIV (see page 3). As more people are living longer and healthier lives with HIV, IPPF Member Associations will have to find creative and innovative ways of meeting their sexual and reproductive health needs – from providing additional psycho-social support; strengthened integration with other health and care services for older adults to forging new partnerships with organizations specifically working with older adults. Love Kevin
2 HIV Update September 2011
50 Plus – the experiences of older people living with HIV
1. Full report of A national study of ageing and HIV (50 Plus) is available at www.tht.org.uk/binarylibrary/peoplesexperienceofhiv/50-plus-final-report.pdf
Percentage of respondents concerned
70 60 50 40 30 20 10 0
di Fin f fi a cu nc lt i ial w Di es ith f fi se cul l t M f- c a ie s en re d e t al h pr ea In ess lth io / ab n il he it y al to th ge c t S di oci are sc al rim st in ig m at a io / Lo n ne lin es s Em pl oy m en t Fin d pa ing r tn a er
The UK’s 50 Plus research, done by Terrence Higgins Trust (THT), MBARC and Age UK for the Joseph Rowntree Foundation, surveyed 410 older adults with HIV – one in twenty of all those with HIV in the UK1. They found that HIV systematically disadvantages those infected across their lifetime in three key areas – health, financial and social wellbeing. Older people with HIV, as a group, have twice as many other long term conditions (on top of their HIV); they are less economically active and less likely to have savings for old age; they are less likely to have their own home; they have significant levels of social isolation and poor mental health and considerable fears for the future. Not everybody ends up alone and in poverty, by any means, but some do and many others are disadvantaged across their lifetime in ways that could be changed, with proper planning and support. These findings echo similar research in the US and the Netherlands, which suggests that whatever your health and social care systems, some of these problems will occur. For all these studies, people over 50 with HIV were a mixed group of the long term and more recently diagnosed. Obviously, those diagnosed longer ago - when everyone expected to die and many stopped work and spent their savings, and when many people saw their friends and partners die - had the greatest problems with health, wellbeing and poverty but even those more recently diagnosed were often disadvantaged in comparison with their peers. With HIV, however well you start off, you may encounter stigma and ill-health that leads to broken relationships, lessens employment opportunities and damages your ability to provide for the future. At THT, we believe this means we need to change our services, not only to support those currently over 50 who are in greatest need, but also to work with younger people and those more recently diagnosed to minimise the problems they may face as they age with HIV. We need to help people stay in work or get back to it; manage their money and plan for the future; guard against social isolation and poor mental health; live healthy lives to reduce co-morbidities and improve quality of life. One of the important aspects of this research is that it was undertaken at every stage with the close involvement of older people with HIV; on the advisory panel, as community researchers, as writers and as communicators of the findings. In the West, our elders are often neglected and survey respondents reported experiencing as much stigma around age as HIV. But older people with HIV are an enormous resource for the future.
80
Box 1: Advocacy and Answers For the Terrence Higgins Trust (THT) in the UK, doing the survey itself acted to mobilise people and spread knowledge. People completing the survey could ask for further help with any of the issues raised or stay on a mailing list. We found a population of older people with HIV who wanted a voice, many of whom have now started to become more active through our positive website, www.myhiv.org. uk. Some have joined THT as campaigners, or just to get regular bulletins to improve their health and access to services, becoming members of the largest UK network of people with HIV. We, and they, can now speak with authority to services for older people about the ways in which they need to adapt to help people with HIV – and to HIV services about the needs of older people. For any country where treatments are starting to keep people alive into older age, we’d recommend doing this kind of survey and finding out what it’s really like for older people with HIV within each culture. Helping people to express their fears for the future has meant we can work to either reassure them or to change the situation. Supporting older people with HIV to find their voices can work not only to improve things for them, but also for future generations. Expected support and information needs in the future 10 0
Percentage of respondents who expected need
By Lisa Power, Policy Director (Terrence Higgins Trust, United Kingdom)
Concerns with growing older with HIV
80 60 40 20 0
ab tre out In at he for m a m w S ent lth atio or o a k i cia is su n d n ng l e s op up s po po r tu r t / ni ne t i e ts So cia l ca Ph re ys ic a lt he ra em py ot C io ou na n l s se d e F i n u p pl l i n g bt an o / m cia r t an l ag ad H o em vice en / us an ing t d ad su v p ic Em p o r e pl t oy m en t
As treatments for HIV improve in both quality and accessibility, people are living longer with the virus. In some countries, provided their HIV is diagnosed in good time and treatment provided, people can now hope to live well into old age. The over 50s is the fastest growing group of people living with HIV. But what quality of life can they look forward to, and how can it be improved?
September 2011 HIV Update 3
Older and wiser HelpAge International has been implementing programmes addressing the needs of older people affected by HIV for 10 years. By Rachel Albone, HIV and AIDS Policy Advisor (HelpAge International, United Kingdom)
As the work of HelpAge initially focussed on mitigating the impact of the epidemic on older carers, Rachel Albone, HIV and AIDS Policy Advisor, gives her perspective on the changing importance for supporting older people living with HIV: While supporting older carers remains central to HelpAge International’s work, we like others, have been witnessing a shift in the epidemic with an increasing number of older people living with HIV. In 2005, UNAIDS estimated 7 per cent of people living with HIV worldwide were aged 50 and over. While a more up to date global estimate is not available due to the focus on 15-49 year olds, where data is being collected, significant increases are being seen. Recent data shows 14 per cent of people living with HIV in subSaharan Africa are aged 50 and over. By 2015 at least 50 per cent of those with HIV in the US will be in this age group.
Despite these increases, the response to HIV remains largely restricted to the 15-49 year age group. Policies and programmes rarely include older people or their need for access to services and support. HelpAge is working in east and southern Africa to raise awareness of the impact of HIV in and on older people and to support older people to live positively. Prevention, treatment, care and support programmes must be age sensitive and address older people’s specific needs. Our approach is one of peer education and support. We establish peer support groups for older people living with HIV, providing psychosocial support, advice on adherence, and support to mitigate the impact of epidemic. We also recognize the need for improved access to bespoke counselling services for older people. With an ever increasing number of older people living with HIV, what we need and want to see is a policy and programme response that is fully inclusive of the needs of older people.
A doctor’s perspective In clinical practice health care providers have to manage previously unchartered territory as they manage long term survivors of HIV. By Ashraf Grimwood, Chief Executive Officer (Kheth’Impilo, South Africa)
Dr Ashraf Grimwood, the CEO of Kheth’Impilo (meaning ‘Choose Life’), who remains in clinical practice in Cape Town, South Africa with over 20 years of experience in managing HIV, gives his perspective on some of the key clinical considerations on ageing and HIV: • Increased risk of non–HIV related conditions: HIV infection itself causes rapid aging of the immune system with which comes early dysregulation of processes controlling inflammation. There is an increase in inflammatory chemicals in the body that can increase risk of non-HIV related conditions notably: 1 2 3 4 5
cardiovascular disease; loss of bone mineral density; renal dysfunction; and neurological fall out; and non-HIV related cancers
• Earlier initiation with ART may decrease rapid ageing processes: To slow this rapid ageing process early diagnosis and staging is critical so that ART can be initiated. The evidence is increasing that earlier treatment at CD4 levels above 350 cells/mm3 to 550 cells/ mm3 will improve regulation of these inflammatory processes and delay ageing. • Nucleoside Reverse Transcriptase Inhibitors (NRTIs) may accelerate ageing: There might be an association between NRTIs and ageing due to the impact on the cell DNA (telomere shortening) but this needs further investigation (The class of NRTIs includes such drugs as AZT, ddI, ddC, d4T, 3TC, and abacavir). • Lifestyle management and choices need to be increasingly promoted as part of client care: Factors such
as smoking, more than 20g of alcohol per day for men and 10g for women, high saturated and trans fat and sugar diets, little exercise, and excessive use of recreational drugs need to be addressed. Good mental health should be supported with concerted efforts and support on issues such as depression and denial as they impact negatively on adherence. • Utilization of every HIV visit for routine and regular checkups: HIV positive clients should routinely be screened for symptoms of diseases of lifestyle and cancers with regular monitoring of blood pressure, blood sugar, lipid profile and cancer screening (notably prostate for men and breast and ovarian for women over 50).
Related resources HelpAge International www.helpage.org Coming of Age: A guide to ageing well with HIV www.justri.org/COA-web.pdf 50+ & HIV+ www.tht.org.uk/informationresources/ publications/?pubid=39000
4 HIV Update September 2011
People at IPPF
Shalina Azhar Programme Officer – HIV, IPPF East & South East Asia and Oceania Region (ESEAOR) Office As a new addition to the IPPF family, only starting this past July, my role at IPPF ESEAOR is supporting and coordinating the work on HIV and AIDS in the region. Having been involved with this issue for the past 12 years, I find myself particularly interested in women’s issues; initiating discussions about a woman’s right to ‘own’ her sexuality, her sexual practices and behaviours, and her reproductive rights.
In Malaysia and in this region, we need to trigger changes in behaviours, thoughts and mindsets to prove that a woman’s worth is not tied to a man. And I believe that this will have a significant impact on reducing a woman’s vulnerability to HIV. My hope is that everyone will look at HIV more honestly, fairly and without any prejudice. HIV is such a fascinating issue to work on because I think it brings up
our failings as a society - it shows up every bit of dirt and grime that we try so hard to mask and cover. And yet, within the community itself - the so-called ‘underbelly of society’, you find the most beautiful spirit and energy. And the more people I meet, and the more experiences I have with the community, the more it reaffirms my belief and commitment. It’s always about the people and the community. It always will be. There is always a face, a person, a life story attached to every single number or statistic.
News in brief
New publications
Key dates
Preliminary report on the study “Hormonal contraceptive use increases women’s risk of acquiring and transmitting HIV”
Love, Life and HIV Toolkit
Commonwealth Heads of Government Meeting (CHOGM) 28- 30 October 2011 Perth, Australia
A prospective cohort study conducted from 2004 to 2010 demonstrated an increased risk of HIV acquisition and transmission among sero-discordant couples using hormonal injectable contraception. While the results of this study are significant statistically and noteworthy from a public health perspective, there is a need for additional research to confirm and better understand the study’s findings and address key outstanding issues and questions. Until conclusive findings are available, the World Health Organization (WHO) guidance is the best available guide for programmatic decisions that affect most women. For further information and to read IPPF’s response: http://bit.ly/npFW7j
HIV team contact details Kevin Osborne Lucy Stackpool-Moore Daniel McCartney Dieneke ter Huurne Jon Hopkins Liz Tremlett
The toolkit aims to develop a greater understanding of some of the issues facing young people living with HIV today. Available in English, French and Spanish, it includes a 28-minute film about young people living with HIV from the Dominican Republic, India, Mexico, Russia, South Africa and Swaziland discussing a host of issues that affect their lives; a session plan to accompany each of the films themes; and handouts with further information on each of the themes. The resource pack is available at: http://bit.ly/lovelifehiv
Sex between men in your city This report summarizes key findings of a situational analysis of community responses to sexual health and HIV among MSM and transgender people in six metropolitan areas in developed Asia: Kuala Lumpur, Singapore, Hong Kong, Taipei, Seoul and Busan. The analysis revealed four key areas for increased action and outlines recommendations to better respond to men’s sexual health, including HIV, in the region. The publication is available at: http://bit.ly/nR4Oku
World AIDS Day 1 December 2011 International Human Rights Day 10 December 2011
Upcoming conferences Commonwealth People’s Forum 25-27 October 2011 Location: Perth, Australia www.commonwealthfoundation.com/ CPF2011 2011 International Conference on Family Planning 29 November - 2 December 2011 Location: Dakar, Senegal www.fpconference2011.org HIV and Ageing: Addressing the neglect of older people in the HIV response 2-3 December 2011 Location: Addis Ababa, Ethiopia www.helpage.org 16th International Conference on HIV and Sexually Transmitted Infections in Africa (ICASA) 4-8 December 2011 Location: Addis Ababa, Ethiopia www.icasa2011addis.org
If you’d like to subscribe to this quarterly newsletter, please contact HIVinfo@ippf.org Senior HIV Advisor Senior HIV Officer: Linking SRH and HIV HIV Officer: Research and Technical Support HIV Officer: Prevention, Treatment and Care HIV Officer: Youth HIV Officer: Stigma
kosborne@ippf.org lstackpoolmoore@ippf.org dmccartney@ippf.org dthuurne@ippf.org jhopkins@ippf.org ltremlett@ippf.org
International Planned Parenthood Federation 4 Newhams Row, London SE1 3UZ United Kingdom tel +44 (0) 20 7939 8200 email HIVinfo@ippf.org web www.ippf.org