By Julian Meldrum
The last major HIV/AIDS conference of the year was royally opened in Chiang Mai, Thailand, on Monday 17 December. The fifth International Conference on Home and Community Care for Persons Living with HIV/AIDS is the full title (as well as providing a link to the official website), but Home and Community Care (HCC) conference will be used in this and following reports! In fact, a week-long programme of activities is already well under way, engaging the local community and 2,600 participants, 600 from Thailand itself, including many people with HIV and from many countries across Asia, Africa, Europe and the Americas. The conference organisation – a joint project of the Thai Red Cross Society, Ministry of Public Health and Ministry of the Interior - is excellent, and the organisers appear to have risen very well to the challenge of coping with twice the number of participants they first expected.
In the wake of a decision by the Thai government, announced on World AIDS Day, 1 December, gradually to extend a new national health insurance scheme to include antretroviral drugs for HIV, with the goal of expanding to treat 10,000 people next year rising to 150,000 by 2006, the conference is timely and the mood is a positive one.
The opening ceremony, broadcast live on Thai radio and TV, included a welcoming speech from HRH Princess Somsawali, who spoke of the conference as "an opportunity to affirm solidarity and the power of humanity". It heard from Prasert Dechaboon, representing people living with HIV/AIDS of Thailand, who called for every man, woman and child to have equal access to HIV/AIDS treatment and care. Sharon Thekiso, a school student from South Africa, spoke eloquently of the limitations in her country's "confused" response to the epidemic that is now set to devastate her generation. It also featured a welcoming dance in the Lanna tradition, a specially written song, performed by a choir of schoolchildren, with each verse sung in Thai and in English, and a dramatic presentation by people living with HIV which had been prepared with the help of a professional theatre company.
The first plenary session, on Tuesday morning, 18 December, had three speakers, two of them positive women with important messages to convey.
Millie Katana from Uganda, representing GNP+, focussed on the expectations that people with HIV had of care-givers and how these are changing in countries where the epidemic is still growing. The spectrum of care and support necessary ranged from counselling and testing through help in meeting a range of social and medical needs which she described, including ARV treatment and palliative care.
With vivid real-life examples she made the point that services, especially those providing psychosocial support, needed to treat people as individuals and to assess their needs appropriately rather than imposing standard solutions which could alienate as many people as they assisted.
Sometimes services had been developed to meet the needs of those affected first and most severely by the epidemic and had used techniques such as drama and music to promote a sense of community and self-worth. These methods became quite inappropriate when the epidemic spread to people outside these original populations, who don't feel alienated in the same way, if at all, from their community. One grandmother, who had just lost a daughter with AIDS, spoke in response to her encounter with a local service centre, "this is not a disease to sing and dance about".
Extending access also meant, in many countries, developing services tailored to the needs of people who are and hope to remain in paid work. This could mean reviewing opening hours, or the location or style of services.
Material support could b helpful if well-designed and individual. But again, if given on a blanket basis it may not be appreciated and may be abused. An income generation scheme for widows that focussed on handicrafts might be and clearly was very helpful for some, but would leave a woman like herself (with an MBA degree) unimpressed if that were the only choice that seemed to be on offer.
Similarly, food support may well be needed by some, but if everyone attending a care centre finds themselves given a pack of dried rice and other food, some may be alienated.
One area of need which often suffers as the numbers using a service increase is information and education for positive people to enable them to live positively and to educate those around them, including on HIV prevention. Also, for caregivers to perform this role it was absolutely essential for them to keep their own knowledge up to date, as their credibility could too easily be lost if it becomes clear that they have not done so.
The need to respect and maintain confidentiality by specialised service providers was another challenge, as the perceived lack of it could be a major barrier to people accessing advanced medical services in particular. (However, she didn’t really explore how providers could reconcile the need to be visible in the community and the need to enable people to attend without identifying themselves outside as people with HIV.)
Continuing on the medical theme, she called for more attention to women’s medical needs. She also spoke of the inadequacy of diagnosis and treatment for many conditions and gave a distressing story of the failure of a supposedly leading hospital in Uganda to start TB treatment in a timely way for a girl she had known, on the basis that she wasn’t smear positive for TB which, as she pointed out, was often the case even when people with HIV do have active TB in their lungs. The girl had died, and her death was probably avoidable.
On antiretrovirals, availability has been seriously restricted by cost. The “time has run out for this”, there was plenty of evidence that minimal monitoring can be enough and there is “no excuse so far as infrastructure is concerned.” CD4 testing and clinical assessment were good enough, without viral load, to know if treatment is working.
In conclusion, she said caregivers had to change – with a broad range of services, diverse yet integrated, with respect of confidentiality and above all, set to meet the needs of individuals.
Susan Paxton, from Australia, represented APN+ and spoke on some of the many ways in which people with HIV had suffered violations of their human rights, and how this fed into a vicious cycle of fear and stigma. Women and children with HIV appeared to be more vulnerable than men.
She questioned whether in countries where more than 90 per cent of pregnant women were being tested, they had enough information to make a truly voluntary decision. She was concerned about women who, on testing positive, did not return to the clinic. Were they effectively being denied antenatal care through lack of adequate support around HIV?
There continued to be problems with healthcare, ranging from denial of treatment for a range of conditions which might or might not be HIV-related, through to testing without consent. Her own life had been changed by an incident in 1992 when she had been denied treatment and her confidentiality was grossly abused by a healthcare provider. This had led her to reconsider a decision to “go public” with her HIV status, although in fact she had done so in personal ways, for example, talking to school children, while refusing to talk to the media for many years.
The best answer to this lies in making it possible for people living with HIV to declare their status and play a full part in the response to HIV and AIDS through doing so. As a step towards this, she is currently involved in a project across four Asian countries to document and analyse patterns of HIV-related discrimination. Data was being collected by positive people, who were being trained and supported to do this. In Indonesia and the Philippines the project had now completed its first stage, in India and she hoped also in Thailand it was about to start.
The evidence from these surveys already showed widespread problems even where the law should be preventing them. The Philippines in particular now has excellent laws but no-one has yet been able to stand up and use them to challenge the everyday discrimination people continue to experience. This would, she thought, come in time but would require a lot of individual courage and moral support from organised affected communities.
One of the most impressive examples of where this had been achieved was in fact in Northern Thailand, in a number of villages she had visited around Chiang Rai. Here, people with HIV have organised, initially with support from health workers and have received training which has enabled them to set up services and play an active part as members of the community in addressing the community’s HIV-related problems. There are now hundreds of support groups for people living with HIV in Thailand, building capacity which is “winning back” rights for people living with HIV and their carers.
”People living with HIV are an epistemic [clearly defined] group with unique expertise who, if appropriately supported and trained, hold the key to an effective response.”
Dr Jordan William Tappero, working in Thailand as part of the Ministry of Public Health’s collaboration with the US Centers for Disease Control and Prevention (CDC), reviewed the state of medical treatment in a basic way. He did not discuss such topics as intermittent treatment, the use of directly observed therapy and once-daily regimens, or the needs of children with HIV. He did refer to penicilliosis (infection with the fungus Penicillium marneffei), which is a major problem for people with HIV in Thailand and other Asian rice-growing countries, and which he said became a risk, alongside PCP, when CD4 counts were below 200.
Among other things, he talked about TB prophylaxis (irrespective of CD4 count, once active disease has been excluded, although he did not discuss how to do this if X-rays are not available) and the use of cotrimoxazole. He said cotrimoxazole should be offered when CD4 count is below 200, although as he only referred to prevention of PCP and toxoplasmosis, it wasn’t clear what he would suggest when the drug is used to prevent bacterial pneumonias in HIV/latent TB coinfection or is valued for its effect in reducing malaria incidence.
Cryptococcal prophylaxis, with a weekly dose of fluconazole, is recommended in Thailand where CD4 counts are under 100, although not recommended in the USA or Europe (where rates of cryptococcal meningitis are far lower). This could safely be discontinued if a person on antiretroviral therapy recovered their CD4 count to a level above 200 (and possibly 100).
He finished with some messages for people with HIV (principally, to seek testing and ask health-care providers about prophylaxis), for health care providers and for the public health community. The most important, perhaps, was for the latter group to work to increase awareness and to increase the resources available for HIV treatment and care.
What medicine currently has to offer