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David Edler works for AFAO as a Policy Officer.
HIV in a multicultural society
Living with HIV presents specific challenges for people from Culturally and Linguistically Diverse (CALD) backgrounds, bringing with it new challenges for prevention and education, and for the care and support of positive people from these backgrounds, reports HENRIKE KÖRNER.
Two new studies at the National Centre in HIV Social Research will focus on people from CALD backgrounds to deliver information on the lived experience of HIV positive people from CALD backgrounds in the Sydney metropolitan area and to determine why this group seems to present late for HIV diagnosis.
The studies, Living with HIV and Cultural Diversity, and Barriers to Testing and Late Diagnosis, will be conducted in collaboration with social workers and health care professionals working with people from CALD backgrounds. Involved are key staff from the Multicultural HIV/AIDS and Hepatitis C Service, the Bigge Park Centre at Liverpool Hospital, PLWHA NSW and the National Centre in HIV Epidemiology and Clinical Research.
Survey studies examining the experience of positive people cannot provide information on the specific needs and experiences of people from CALD backgrounds for several reasons. Firstly, this group is less likely to be included in large surveys due to language and literacy issues[i] and secondly, the numbers of people from CALD backgrounds who are included in these surveys are so small that they cannot be analysed statistically as a separate group[ii].
Individuals from CALD backgrounds may be part of one or more priority groups identified in the National Strategy[iii]: gay and homosexually active men, injecting drug users and people living with HIV/AIDS. In addition, the National HIV/AIDS Strategy 1999-2000 and 2003-2004 identifies people from CALD backgrounds as a group with specific needs concerning HIV/AIDS related education, prevention and health promotion initiatives.
Statistics demonstrate that there is a relationship between people from a CALD background and a number of AIDS related issues. According to the 2000 Annual Surveillance Report[iv] 15.4 per cent of AIDS diagnoses in Australia between 1995 and 1999 were among people born in non-English speaking countries representing an increase from 13.8 per cent in the period 1995-1997[v]. In the period 1994-2000 just under 50 per cent of new HIV diagnosis were attributed to heterosexual contact with 28 per cent of these being persons from high prevalence countries and 19 per cent of these had a partner from a high prevalence country[vi]. Studies have also found a greater proportion of late presenters were born in Asia, Southern Europe or South America. 61 per cent of people born in southern Europe or Mediterranean countries and 44 per cent of people born in Asian countries were late presenters suggesting considerable cultural barriers to accessing information about HIV and counselling. There are serious implications regarding delays in the uptake of antiretroviral treatment and in behaviour modification (serodiscordant relationships)[vii].
In the spectrum of AIDS defining illnesses, one determinant has been country of birth. The incidence of tuberculosis and cryptococcis was significantly higher among people with HIV/AIDS born in Africa and Asia[viii].
Qualitative research into people living with HIV/AIDS from CALD backgrounds in the USA and New Zealand provides further evidence of the need for more research into this group. Findings have shown that people who are not part of the ethnic and cultural mainstream face specific problems and challenges and are especially vulnerable. Research reveals it is important to be competent in English to be able to have access to knowledge about HIV/AIDS transmission and disease progression[ix]. Furthermore, family is important and an integral part of culture which may have implications for HIV testing and disclosure of status.[x]People from CALD backgrounds, especially refugees, may experience difficulties with the health care system and may be afraid of medical authority.[xi]
The Cultural Diversity study will look at the lived experience of HIV positive people from CALD backgrounds in the Sydney metropolitan area. It is based on the understanding that individuals live their lives within highly complex social relations which are historically and culturally constructed, and that history and culture shape the potentials as well as the constraints in people’s lives[xii].
By investigating the intersections of living with HIV, belonging to a culturally diverse group outside the Anglo-Celtic mainstream, and negotiating two cultures, the focus will be on common issues across risk exposures such as sexual contact and injecting drug use and cultures/ethnicities.
More specifically, the objectives of the Cultural Diversity study are:
Between 20-30 HIV positive people from CALD backgrounds from the Sydney metropolitan area will be recruited through the Multicultural HIV/AIDS and Hepatitis C Service, including gay men, heterosexual men and women.
In depth open-ended interviews commended in January this year and are concerned with the lived experience of being HIV positive from a CALD background. The issues explored will include diagnosis and meaning of the diagnosis, access to HIV/AIDS related information, access to health services and HIV therapies, access to support, the role of family and community, issues related to disclosure and language and cultural barriers.
Participants with no English or with insufficient English to participate in this kind of interview can participate through a health care interpreter with the appropriate training and experience to interpret issues related to sex and sexuality.
The study will help to answer questions about the specific needs of HIV positive people from CALD backgrounds and will inform the development and delivery of culturally appropriate health promotion materials and services. It is hoped that it will contribute to an improved awareness and understanding of HIV related issues in ethnic communities. A report is expected to be available by the end of the year.
The second study, Barriers to HIV Testing and Reasons for Late Diagnosis, is a collaborative project between the National Centre in HIV Social Research, the National Centre in HIV Epidemiology and Clinical Research, and the South West Sydney Area Health Service.
Of the recent "late presenting" HIV/AIDS patients at Liverpool Hospital, 76 were from an English-speaking background and 50 were from CALD backgrounds. Of the latter group, many were from South East Asian and South American countries.
The study aims to discover why people delay testing, why they finally sought testing, and to determine their feelings on the impact of a HIV positive diagnosis. Based on information from health care and social work professionals, the hypothesis is that major barriers to testing include the stigma of being HIV-positive, fear of loss of confidentiality and subsequent disclosure, and a lack of information and misinformation about HIV/AIDS.
All HIV/AIDS patients at Liverpool Hospital’s Bigge Park Centre will be interviewed using a short questionnaire designed to collect demographic details, information about people's use of health care services, details about their diagnosis, their reasons for putting off testing, issues related to disclosure and community, and general attitudes in their communities towards HIV/AIDS and people with HIV/AIDS.
The small study will provide some understanding of the reasons for late diagnosis and will enable development and testing of a reliable questionnaire, which can be used to survey late presenters in NSW and elsewhere. It will also make it possible to develop educational resources and provide services to facilitate HIV testing for this group. Interviewing is expected to start by March, pending approval by the relevant ethics committees.
Although both studies are only small, emerging themes and trends will provide an indication on relevant issues that can be followed up in larger studies and will indicate the gaps needing to be filled.
However, there are limitations to the studies. The Cultural Diversity study is limited in that participants receive language and culture specific social support through the co-workers of the Multicultural HIV/AIDS and Hepatitis C Service, yet issues for people without this kind of support may be quite different and require investigation.
Another limitation is that the participants recruited for these two projects are all connected to institutions in the Australian health care system. This raises the question of refugees, and, more generally, those who are somehow not connected to the system and how they can be included in health care services as well as in research. While the studies will deliver much needed information, there is an outstanding need to generate an understanding of the needs and experiences of refugees and others outside of the health care system. Henrike Körner works with the National Centre in HIV Social Research. [i]Grierson J, Mission S, McDonald K, Pitts M, O'Brien M (2002) HIV Futures 3. Australian Research Centre in Sex, Health and Society. Melbourne: La Trobe University. [ii]Prestage G, Song A, Grierson J, Race K, Grulich A, Rawstorne P, Kippax S (2001) pH positive Health. Sydney: National Centre in HIV Social Research. [iii]Changes and Challenges: National HIV/AIDS Strategy 1999-2000 and 2003-2004. Commonwealth Department of Health and Aged Care. [iv]2000 Annual Surveillance Report: HIV/AIDS, viral hepatitis & sexually transmissible infections in Australia. National Centre in HIV Epidemiology and Clinical Research. [v]1998 Annual Surveillance Report: HIV/AIDS, viral hepatitis & sexually transmissible infections in Australia. National Centre in HIV Epidemiology and Clinical Research. [vi]2001 Annual Surveillance Report: HIV/AIDS, viral hepatitis & sexually transmissible infections in Australia. National Centre in HIV Epidemiology and Clinical Research. [vii]Hocking JS, Rodgers AJ, Rhodes DG, Crofts N (2000) Late presentation of HIV infection associated with prolonged survival following AIDS diagnosis – characteristics of individuals. International Journal of STD & AIDS, 11, 503-508. [viii]Dore G, Yueming L, McDonald A and Kaldor J (2001) Spectrum of AIDS-defining illnesses in Australia 1992-1998: Influence of Country/Region of Birth. JAIDS, 26, 283-290. [ix]Miller JE (2000) Differences in AIDS knowledge among Spanish speakers by socioeconomic status and ability to speak English. Journal of Urban Health: Bulletin of the New York Academy of Medicine, 77/3, 415-423. [x]Scott SA, Jorgensen CM, Suarez L (1998) Concerns of dilemmas of Hispanic AIDS information seekers: Spanish-speaking callers to the CDC national AIDS hotline. Health Education & Behaviour, 25/4, 501-516. [xi]Worth H, Reid A, Ackroyd J, Tamirate-Bowden E (2001) Silence and Secrecy: Refugee Experiences of HIV in New Zealand. Institute for Research on Gender, University of Auckland. [xii]Dowsett GW (1996) Practising desire: Homosexual sex in the era of AIDS. Stanford: Stanford University Press.
The changing face of HIV
By David Menadue
There is no doubt that HIV is changing face – or should that be, faces, everyday. The issue of drug side-effects including the startling changes which lipoatrophy (loss of fat from the legs, arms and face in particular) can wreak has become one of the crucial issues facing people with HIV/AIDS in Australia today.
As Acting President of the National Association of People living with HIV/AIDS (NAPWA) I cannot write a piece about the current issues facing positive people without mentioning lipodystrophy (the general term for all metabolic changes which occur as a result of taking antiviral therapies) at the top of my list. Every HIV agency in the country is acutely aware of the importance of protecting the confidentiality concerns of people with HIV because of continuing discrimination and stigma faced by an individual revealed to have the virus.
To have your cover blown because of very obvious changes to your facial appearance wrought by the drugs you are taking is a cruel side effect positive people are dealing with on a daily basis. This is on top of the metabolic problems caused by the drugs such as constant diarrhea, nausea and an increased risk of diabetes and cardiac problems.
As someone who has taken antivirals since 1988, I had developed a severe case of facial lipoatrophy which became particularly pronounced after several years on proteases. Friends constantly asked if I was tired as the withered look that comes with a marked loss of facial fat can give that impression. Although I am no longer in the workforce I have wondered how an employee could hide the fact that something was awry with their health with such significant changes happening to their face. I still socialise in the gay scene and I know that “the AIDS look” is identifiable by other gay men and that some positive people with the facial changes are so intimidated by this that they avoid going out to gay community functions altogether.
Clearly the implications for people’s mental health, their self-esteem and their concerns about privacy, are great and NAPWA regards finding solutions to facial lipoatrophy as a very important priority which we would like Health Departments, drug companies and any other interested parties consider funding. As the accompanying images show, I have had the New Fill procedure done to my face five times. It has been quite successful and has improved my self-confidence and feelings about my appearance considerably. Unfortunately it is very expensive (at around $700 per injection) and very few people with HIV on a disability support pension (DSP) or even an average income can afford it.
Another top concern for NAPWA in 2003 will be the Federal Government’s welfare reform agenda. Last year’s Budget measure which sought to reduce the eligibility for the DSP to those who were assessed as able to work fifteen hours or less would have had major implications for some positive people if it had not been blocked in the Senate by the Opposition parties. Many positive people who are working part-time jobs can not manage any more hours (say to work full-time) due to their energy levels and they cannot do without the extra money from their earnings to help pay for the costs of their illness. Equally the proposed increases in the co-payments for the Pharmaceutical Benefits Scheme (PBS) would have impacted on those of us who have a huge number of medications to purchase every month.
Despite health improvements for many positive people, HIV Futures 3 research shows that close to half the positive population is not working, with most on a DSP or other form of pension. Clearly the treatments are not working so brilliantly for people that a return to work is always possible. Given this situation, NAPWA is concerned about an increasingly punitive approach being taken by government to the issue of eligibility for the DSP and in issues of work capacity. The government recently introduced new officers working for private agencies to assess work capacity in people who are dubbed “more complex cases” when they apply for a DSP or when they are reviewed for continued eligibility. NAPWA is concerned about these officers’ level of HIV awareness and their ability to understand the complexities involved in living with the virus. We have proposed a series of training workshops for these officers to be coordinated by NAPWA to ensure that positive people get a fair hearing when they are being assessed. This looks likely to happen and we are hopeful that a series of training sessions for doctors attached to Health Services Australia, a semi-government agency which employs the medical staff (formerly Commonwealth Medical Officers) to assess people for DSP eligibility will also get off the ground. This area of work, as well as a range of other impacts on the lives of positive people are monitored and responded to by NAPWA through the HIV Living Project.
There have been implications for service delivery for AIDS Councils and other HIV agencies in the changing patterns of illness brought by the new treatments environment. There are now considerably more people living longer with HIV even though the level of their illness may not be so acute. Service delivery patterns are changing to meet this need with some AIDS Council’s support programs moving more to “buddy” models of care to help positive people with emotional well being needs and to try to reduce social isolation as much as to provide for physical care needs.
Such services and the prevention and education campaigns required to combat HIV/AIDS can only be continued if the Federal Government has a National HIV/AIDS Strategy in place to direct these responses. At the time of writing, we are awaiting the Federal Health Minister’s decision on the review of the current Fourth National Strategy and awaiting notification on when a Fifth HIV/AIDS Strategy might be introduced and what the advisory committee structure will look like to go with it. Over the course of the last Strategy, NAPWA had no formal representation on the national peak advisory committee (ANCAHRD). We have asked that in any future structures, the national peak body representing people living with HIV/AIDS be invited to formally contribute to these deliberations and processes.
NAPWA plays a major role in providing treatments advocacy and information. We coordinate the Treatments Officers Network, the National Treatments Policy Group and auspice the AIDS Treatment Project of Australia (ATPA) which among other initiatives, conducts very successful treatment information workshops and roadshows for positive people around the country. The magazine Positive Living has now been transferred to our control by AFAO and through it, we are able to continue to keep positive people abreast of the latest issues, including developments on the treatments front.
Through our HIV Health Project and Treatments portfolio, NAPWA advocates with drug companies, researchers and government agencies to ensure that the latest HIV treatments are available for people whose current regimens are failing them. The problem of viral resistance to current therapies is a major one for many treatment-experienced people. It is one of several issues we continue to brief both government and industry about as we advocate pre-licensing access for new treatments.
One of the most heartening things I have seen in my role as an activist in recent times has been the acknowledgement by the Federal Government of the importance of having a well-resourced national organisation to represent people living with HIV/AIDS. For years NAPWA survived on minimum resources because there was a view at the Federal level that more than one peak HIV body could not be fully funded. With the arrival in 1999 of the ATPA to the NAPWA Secretariat and through the tireless work of previous President Peter Canavan with Jo Watson, Executive officer, our organisation managed to increase its funding recognition. We now have a secretariat covering a wide brief to support the Board, Portfolio Conveynors and member organisations, and a capacity to do much more for positive people than ever before.
NAPWA is part of the changing face of HIV around the country and we will be out there telling it like it is and advocating strongly for changes and improvements along the way. This is the part of the national response confirming the centrality of positive people to the success of that response. David Menadue is Acting President of the National Association of People Living with HIV/AIDS (NAPWA).
Filling in the picture
New-fill for facial lipoatrophy has focused community attention like few other treatments in recent years. But ‘getting New-fill funded’ is not simply a matter of ticking the boxes or lobbying a few sympathetic pollies. KIRSTY MACHON reports on the progress so far.
All HIV drugs have side effects, and some of them are clinically extremely serious. However, the side effect of HIV treatment which many positive people fear most is lipoatrophy, a characteristic wasting of fat from legs, arms, buttocks, and most notoriously, the face. It’s thought – though not everyone agrees – to be primarily an effect of the nucleoside analogue drugs, though other theories have been put forward, and factors like age and smoking may exacerbate the problem. Thus far, attempts to see if fat loss improves if you stop taking the drugs thought to cause it have not yielded impressive results. It seems the fat loss may take a long time to reverse, if indeed, it ever does. At best, stopping the drugs might prevent the condition from worsening.
The international scientific debate about the causes of HIV fat loss and related body shape changes has been intense – but there is still no agreement as to the mechanisms for its cause, with some theories causing tempers to flare. However, this probably seems far away from the experiences of people living daily with a condition which is not only disfiguring and depressing, but which many people see as a virtual marker of a positive serostatus. So positive people have understandably focused on a much more immediate question - what can I do about it?
In the absence of any treatment, many people have turned to plastic surgery for answers. Numerous products and procedures have reportedly been tried – including some, like silicon implants, which are not without potentially significant long-term side effects of their own. Other approaches, like transplanting fat from another part of the body to the face have not tended to be successful, partly because lipoatrophy depletes fat stores from much of the rest of the body, not just the face. However, the most high-profile plastic surgery procedure being used to ameliorate facial lipoatrophy is polylactic acid, marketed as New-Fill.
New-Fill came to international attention at the Second International Workshop on HIV-Associated Lipodystrophy and Adverse Events in 2000, where French researchers reported in a poster that directly injecting polylactic acid (PLA) into the cheeks could substantively improve and fill out facial contours, and that the substance seemed well-tolerated. But it was the photographs accompanying this study which really impressed, with ‘before and after’ shots showing what clearly appeared to be a remarkable reversal of wasting.
PLA is injected just below the surface of the skin. It is initially injected as a fluid, but converts once injected to a cellulose-based gel, which ‘fills out’ the wasted facial area. Some researchers also believe the product may stimulate the growth of the body’s own collagen, though this is not proven. If this is so, however, it could explain its apparent durability. Treatments may last for up to three years.
PLA is made up of tiny particles of lactic acid joined together. Lactic acid is a chemical which is already present in our bodies: PLA therefore contains no material from other sources, such as animal protein — which can offer trigger allergic reactions. PLA has a long history of medical use, and is used for a range of things including some kinds of surgical stitching. It is popular for other kinds of non-HIV related cosmetic surgery. New-Fill is approved as a medical device by Australia’s Therapeutic Goods Administration (TGA), so its importation and use is legal. However, it is not subsidised by the Commonwealth Government for use in HIV or other contexts.
There is a growing number of plastic surgeons around the country trained to use PLA for treating facial lipoatrophy. A treatment consists of a series of about twenty tiny under-the-skin injections across each cheek or around the affected facial area (like temples), to distribute the product under the skin. Although a local anaesthetic is used, some people report the procedure to be painful while others have found the level of discomfort tolerable. For the first couple of days after treatment, redness, shininess and swelling of the cheeks (a result of the injections) is common. No other side effects have been common in trials, though on rare occasions, surgeons have reported that infection has apparently occurred, as a result of the injection puncturing, for example, a blind pimple.
There is now considerable clinical experience with the use of New-Fill, initially pioneered by Dr Brett Archer, a Melbourne-based plastic surgeon. Many positive Australians have been treated, anecdotal evidence suggesting a high degree of patient and clinician satisfaction with the improvements to physical appearance. It’s usual for a person to need several treatments to complete a course – sometimes as many as six; although three is fairly standard.
The major impediment to PLA treatment is its cost. Including visits to the surgeon and the cost of the product, a course of three treatments could set you back $3,000 or even more. Prices vary around the country. Still, $3,000 is hardly the kind of money everyone has just lying around – so community activists and organisations have been working with clinicians to determine how to improve access to PLA treatment.
Because New-Fill is a medical device, not a drug treatment, the mechanism for the government to subsidise or fund it is not Pharmaceutical Benefits Scheme (PBS), but the Medicare Benefits Schedule (MBS), which covers a whole range of medical procedures and equipment like scans, diagnostic tests, or prosthetic limbs. But having a procedure listed on the MBS is neither straightforward or automatic. A mere approval by the TGA (signifying a product is safe and conforms to manufacturing standards) does not affect whether or not a product gets funded.
For a product, test or procedure to achieve a MBS listing, manufacturers need to demonstrate that it works, is cost-effective, and provides substantive health benefits in the community. To this end, rigorous clinical research is required to be submitted to the Medicare Services Advisory Committee (MSAC), which provides independent expert advice to government as to whether a product, test or procedure is ultimately a wise use of tax dollars. Surgery and devices for purely cosmetic purposes (like collagen lip implants) are most unlikely to attract MBS funding. Some kinds of plastic surgery procedures, however, are funded under the MBS, such as breast reconstruction following a mastectomy. It is the hope of community activists, researchers and clinicians that eventually, PLA could be listed specifically for HIV-associated lipoatrophy – on the basis that this is not a ‘vanity’ cosmetic procedure, but a legitimate corrective for a problem which is a direct effect of the clinical management of an illness.
Thus far – despite several positive overseas studies – the evidence in favour New-Fill is unlikely to be of a sufficient calibre to convince the MSAC to fund PLA for this use. It has been argued that an Australian clinical trial will be needed to bolster the case – but also, to provide answers about some of the questions which researchers and clinicians still have which include:
Towards this end, the National Centre in HIV Epidemiology and Clinical Research held a workshop in August last year – a pow-wow of researchers, doctors, community and industry, to discuss New-Fill, and to share other information about lipoatrophy and its management.
Trial designers have already begun drafting a protocol for a proposed New-Fill trial. It is not yet clear is where the money for such a trial might come from: costs to cover the product, training and treatment, and any medical imaging techniques which would be required to show that the product is working.
The question of just how to objectively prove that New-Fill works has perplexed some of the initial discussions. ‘Before and after’ photographs, and the evidence of physicians, as well as self-assessment of people using the treatment, provide some evidence. But not, argue researchers, enough to make unequivocal assessments, or to satisfy the stringent requirements of bodies such as the MSAC, particularly in an environment where the competition for health dollars is ferocious, and the strike rate for MBS listings far from 100 per cent.
There are some emerging ‘body mapping’ technologies which may help provide a clearer picture of just what is really going on under the skin after New-Fill injections. It is hoped that one such technology able to differentiate fat from bone from other tissue may be harnessed for any study.
Still, even with trial evidence, some believe it may be a hard ask to get New-Fill listed on the MBS. It may be necessary to investigate other means by which the procedure could be made less costly for patients.
Community sector workers and researchers alike agree that it will be some time before the answers to these many questions are resolved. But the problem has focused community attention – and organisations have begun to accord New-Fill as high a priority as antiviral treatments. Possibly even more so. Note: If you are wanting to access New-Fill, be aware that prices may vary, so it is good to ‘shop around’. If you are not sure whether any surgeons in your area are providing New-Fill treatment, contact your local AIDS Council Treatments Officer. Kirsty Machon is HIV Health Policy Analyst for the National Association of People Living with HIV/AIDS.
Shaping lives - psychosocial effects of lipodystrophy
By Asha Persson
While combination therapy has significantly reduced AIDS related deaths and greatly improved life for many people living with HIV/AIDS, many also experience a range of sometimes distressing side effects from their antiviral drugs, including body shape changes such as lipodystrophy.[ii]
It is a commonly expressed concern that body shape change tends to be underemphasised, or even dismissed, as a purely cosmetic side issue. Some people feel that their anxiety over their changing bodies is not taken seriously, or that they are made to feel ungrateful if they complain. Considering how body-conscious western societies are, but also how fundamental bodies are to most people’s sense of self and to everyday experiences and social interactions, it is not surprising that body shape change can have significant implications.
The Side Effects Project, currently under way at the National Centre in HIV Social Research, is a qualitative study that documents and explores people’s experiences and management of body shape changes and other HIV treatment related side effects. From data collected so far, it is clear that people live and cope with lipodystrophy in a variety of ways depending on their personal biography, disease history and social situation. Nevertheless, certain recurring themes are emerging in the participants’ stories.
It’s like being the face of HIV: forced disclosure
Forced disclosure is by far the most commonly expressed concern among the research participants. Many feel that lipodystrophy makes HIV visible, that it marks them as HIV positive, at least in communities where the physical signs of lipodystrophy are known. “In the old days it used to be KS (karposis sarcoma)”, Eddy stated. “That was the identifier. Now it is this”. Accordingly, most participants identify facial wasting as the most distressing symptom of lipodystrophy. “Your face greets the world”, Rick explained. “You can cover all the rest up, but you can’t cover your face”.
Many participants feel that forced disclosure undermines their sense of control over their serostatus: “You’re wearing a sign, and you may not want to disclose that for some reason”, said Michael. Stigma and discrimination are major concerns cited by many, particularly in relation to the gay community itself. Though few claim to have actually experienced overt instances of discrimination because of lipodystrophy, many speak of a subtle division within the gay community between HIV positive and negative people. “It’s us and them”, said Eddy, with others agreeing that this makes coming to terms with lipodystrophy harder.
Forced disclosure is not raised as an issue by the female participants, partly because lipodystrophy often manifests differently in women’s bodies, and partly because of the gendered history of HIV. “I don’t feel like lipo has blown my cover”, Ann put it. Yet women’s experience of lipodystrophy is not without impact and feeds into powerful discourses about body image. “It can really sort of knock you around self esteem wise as a woman. Particularly the belly thing, because women are not supposed to have bellies, or so I’ve been told”, said Ann. While lipodystrophy might not be an outward sign of HIV for women, for some it is a distressing personal reminder: “What I look at is the disease in my body”, another woman said.
Social and sexual esteem A common claim among participants is that lipodystrophy has a negative impact on social and sexual esteem, because they feel their body shape makes them look “different”, “unattractive”, “bizarre” or, as one man put it, “damaged”. This loss of esteem needs to be understood within the context of a cultural landscape defined by powerful and rigid body ideals. Advertising, with its emphasis on beauty and youth, is raised by many participants as particularly unhelpful. It is also a recurrent view among the men that the Sydney gay ‘scene’ unduly exacerbates the difficulties of lipodystrophy. “You know, it’s not a really big problem, except in this context, this body beautiful, competitive scene”, said Damien.
The participants describe how this loss of esteem has various ramifications, such as choosing clothes that conceal the body, going out a lot less and avoiding particular social spaces such as the beach, or the gym at busy times, to escape “people looking”. “At the end of the day”, Eddy noted, “if you feel uncomfortable about your looks, it doesn’t assist your social interaction skills and all of those sort of confidences”.
Participants in regular relationships generally express less concern about lipodystrophy. “My partner says he doesn’t mind, and that makes a big difference to where your mind set is about it”, Trevor explained. The situation is more difficult for those with no regular partner. They often speak of loss of physical and sexual intimacy. “I’m not allowing space in my life to be a sexual being at the moment because of how I feel about my body shape”, said Ann. “I feel more physically isolated than I ever was”, commented José. Some people have resorted to self-imposed isolation because they fear rejection. “Who’d want to rush into the arms of someone who looks sick and lipoatrophied?” asked Jim. Among those who continue to have casual sex, some said they now choose venues and contexts that allow minimal exposure of their bodies and faces.
Old before my time: premature aging Many participants rationalise their changing bodies by referring to age. “It could be the fact that people on medication are aging”, said Damien. “I feel like I’ve just got the middle-aged spread like a lot of people,” commented Lisa. But many also conceive lipodystrophy as a kind of premature aging, primarily because they feel the changes are so sudden. “I’ve always coped with the slow process of aging”, José said, “but this has been so quick that I just have not had time to adjust”. In a culture that celebrates youth as part of the dominant body image, this adds another layer of complexity to lipodystrophy, and there is a sense of anger among many that they are not aging “normally”, but are being “chemically aged”, as Eddy put it.
This isn’t my real body: alienation Body image is central to understanding the impact of body shape changes, but lipodystrophy can also challenge people’s sense of embodiment. Dramatic or unexpected body changes can produce feelings of uncertainty and powerlessness. The participants tell of being confronted with an unfamiliar face or body in the mirror, and of frustrated efforts in the gym to regain their former body shape. “I feel I don’t have control over my body anymore and, you know, that really gets to me” José said.
Some speak of a sense of alienation. “This isn’t my real body,” said Ann. “You're used to your body and then all of a sudden something happens, you have completely no understanding or you can’t change it”, said Muir, who described his buffalo hump as “an incubus, you know, something that’s attached itself, like a leech. I don’t feel like it’s part of me, it’s not part of my body”.
It’s a pain in the arse: physical discomfort Body shape changes not only alter appearance, but can produce a number of unpleasant and restrictive symptoms. While concerns around body image far outweigh references to physical discomfort, several participants mentioned that sitting is somewhat uncomfortable due to loss of “padding” in the buttocks. “Yeah, sitting is a bit of a pain in the arse, literally”, one man joked. “You have to take a pillow everywhere”, said another. Some said their bodies feel less reliable now as fat loss in fingers, legs or feet made movements more arduous. In a few cases, pain and physical constraint due to severe loss of fat was the overriding concern because of the significant impact on lifestyle and ability.
Trade offs and political aesthetics Despite its difficulties, most participants describe lipodystrophy as a regrettable and frustrating “trade off” when considered in a broader health context. “Things could be a lot worse. I could be in hospital” is a typical answer. Michael said, “I think containing the virus is number one. Lipodystrophy is sort of a bit further down that list”. Jim speculated, “Would I rather be dead than have side effects? No.” While there is a sense of anger about this predicament, most participants express a determination to “work through” their experience of lipodystrophy and to “come to terms with it”.
However a few participants resist what they see as an overly negative representation of lipodystrophy. “People actually construe this as always negative, you know. It’s not always negative”, Alf argued. For some, lipodystrophy is a sign of survival and pride: “Well to me it’s a bit like a badge of honour in a way because it says that I’m positive and I’m out”, said Michael. To these participants, the body is an imprint or manifestation of their history and identity. “I mean it’s just part of having the disease. In a way it’s a statement, a confirmation of who I am and what I am,” Alf added.
As personal biographies take shape in this way, lipodystrophy is concurrently embedded in a complicated set of social, economic and political issues around HIV, treatments, and body image. As such, it poses a challenge not only to individuals, but also to pharmaceutical companies, the medical profession, and gay community as a whole. It is clear from some of the voices presented here that lipodystrophy needs to be recognised as something far more consequential than a mere cosmetic side issue. They suggest a new, more diverse aesthetics is needed in gay community - a political aesthetics that embraces all bodily traces of its history. Many thanks to all research participants and to Jeanne Ellard and Sean Slavin for their helpful comments. * All names have been changed. [i]Kane Race (2001) The undetectable crisis: Changing technologies of risk. Sexualities, 4(2): 167-189. [ii]Lipodystrophy is usually associated with abnormal fat redistribution, including wasting of arms, legs, buttocks, and face, commonly referred to as lipoatrophy, and accumulation of fat on abdomen, breasts and sometimes back of neck. Prominent veins on legs and arms are also common due to loss of subcutaneous fat. Other symptoms include metabolic abnormalities such as elevated blood fats and blood sugar disturbances, which increase the risk of heart disease and diabetes. Asha Persson is a research officer at the National Centre in HIV Social Research.
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The 'War on Terror' and HIV/AIDS: combating insecurity on many fronts?
Academics DENNIS ALTMAN and MICHAEL O’KEEFE take a look at the impact the war on terror is having on HIV/AIDS.
Dennis AltmanAt the last ICAAP, three weeks after the September 11 attacks, I remember saying to Peggy Johnson from the US National Institutes of Health that it was good she had come when so many other Americans had cancelled. "Of course I came," she said. "My war continues."
The question of how far the war on terror and looming prospects of war with Iraq and perhaps North Korea has diverted the attention from the rich world is the underlying question Michael O'Keefe poses. This piece is the beginning of a conversation we are engaged in to make sense of the links between security and HIV/AIDS as part of an Australian Research Council (ARC) funded research project.
Michael comes to this project from a background in international relations, but quickly grasped the importance of HIV for global security. Unfortunately the reverse is more often the case. International conference after conference has tended to ignore this dimension of the epidemic - in fact to offer virtually no space for discussion of the larger global political environment within which HIV is unfolding except in set pieces by political leaders (more often former leaders).
The crucial point is that the growing death and devastation from AIDS has the potential to wipe out whole generations, and with them to undermine development and public administration, in the poorest and most vulnerable countries. I know that Foreign Minister Downer (and former Health Minister Wooldridge) understand this. I am less sure that either Prime Minister Howard or Opposition Leader Crean do, nor that they have incorporated an awareness of the potential for disaster the epidemic represents into their picture of foreign policy.
AFAO has called for the Australian government to follow the US example and spend more on fighting HIV in this part of the world. If we really think through the impact on security, and look at the collapse of the state in some of the worst affected areas of Africa (Zimbabwe is a striking case) it could well be argued that Australia's security interests would be far better served by increasing HIV programs in Indonesia and Papua New Guinea than by sending troops to a far off war against Iraq where our involvement will make minimal difference.
Even more important can be Australia's role in advocacy. The US Bush Administration is on record opposing condom promotion, sex education for adolescents and harm minimisation, all of which are vital parts of an effective HIV prevention strategy. (In practice the US is less restrictive in its overseas HIV programs, but it is unlikely to focus on the sort of vulnerable and marginalised groups who have played a far larger role in the Australian response, and who risk being yet further marginalised as international AIDS programs become mainstreamed.) The Australian government understands this. The challenge is that this message be conveyed to our American allies with any of the same urgency with which we back their intervention in Iraq.
Michael O'KeefeBefore September 11 international concern over and action to address the HIV/AIDS pandemic was gathering momentum.
In the 18 months since the September 11 attacks on the US our political leaders, journalists and the public at large have been consumed with planning, reporting and debating the 'war on terror'. Even as I write the US and Iraq are facing off in a confrontation that it seems will almost inevitably lead to war. With all this emphasis on the 'war on terror' and weapons of mass destruction it is understandable that there is apprehension in some quarters that other pressing concerns of the international community are being sidelined.
While many observers are focused on the resources allocated to combat HIV, a more interesting range of issues is raised if we examine whether the 'War on Terror' will cause any unintended consequences (either costs or benefits) for efforts to combat HIV. From the 'operational' perspective, the 'war on terror' itself involves 'low intensity operations' across the globe and as such is not likely to lead to an increase in the epidemic in a particular area. This situation could be reversed if there is a major war. If the predictions of millions of people being dislocated by a war against Iraq prove to be correct there is the potential for an expansion in the epidemic in the Middle East.
However the movement of millions of refugees into neighbouring states would not in itself guarantee the rapid spread on HIV, not the least because of the low prevalence of the infection in the region.
Operational issues aside, there are encouraging signs that the 'war on terror' will have a beneficial effect on efforts to combat the epidemic. Before September 11 many policymakers put HIV in the 'too hard basket' because there were no simple solutions to the epidemic. HIV was viewed from the standpoint of public health. It was perceived as a second tier security issue, one that did not pose a clear and present danger to developed countries, and one that could not be effectively countered through the use of military force. This view was especially prevalent within the defence and foreign policy establishments responsible for allocating large sums to protect national security.
Before September 11 terrorism was also treated as a second tier security issue. It did not pose a major threat to western states and was extremely difficult to counter. Military forces concentrated on countering threats from other organised military forces. Therefore, HIV and terror were treated as the same 'class' of threat - irritants rather than the main game. Since the end of the Cold War a range of intersecting trends, which can be placed under the banner of globalisation, have changed the battlefield. These trends are weakening the orthodox focus of military establishments on first tier military threats. Porous borders undermine the utility of military force in countering the threat posed by weapons of mass destruction while amorphous second tier threats thrive in this environment.
For instance, since September 11 policy-makers have made a link between countering bio-terrorism and HIV. It is argued that biological weapons and HIV do not respect borders and have the potential to pose a major threat to developed countries. In many of these countries there has been an increase in funding for national institutes of health not simply to deal with the threat of bio-terrorism but with a focus on global public heath issues, including HIV, as international security issues. In this respect the 'new' perception of threat from bio-terrorism has had a beneficial impact on efforts to combat the global HIV pandemic. Recent developments in the 'war on terror' and efforts to combat HIV illuminate a number of significant existing and nascent international trends in the treatment of the epidemic. In some important ways terrorism and HIV are beginning to be characterised as being in the same 'class' of threat to states, societies and international order. It follows that the elevation of terrorism to a primary concern of the international community may have flow on effects because the intellectual space has been created for HIV to be treated in a similar way.
It is clear that perceptions of HIV have been gradually shifting in the minds of US policymakers as is being treated as a major economic and security issue. A similar trend is evident in Australia, with Foreign Minister Alexander Downer leading the charge. Initiatives that were inspirational at the time of September 11 have been funded and implemented rather than being sidelined. More significantly, indications that there is an increased emphasis on combating HIV can be seen in recent government and non government organisation statements and in a range of new practical programs. The most obvious example of this trend was George W. Bush's unprecedented $25 billion commitment to combat HIV in his 2003 State of the Union Address.
It may be too early to tell what the full ramifications of September 11 will be. However, it has highlighted that, when contrasted to the amorphous threat of terror, the challenges posed by HIV are not insurmountable. If AIDS activists take advantage of the momentum then an unexpected outcome of the 'War on Terror' could be the beneficial impact on both how HIV is viewed by states and on the level of resources allocated to combating the epidemic. Dennis Altman and Michael O'Keefe are in the School of Social Sciences at LaTrobe University in Victoria.
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