On the shoulders of giants

The annual conference of the Australasian Society for HIV Medicine (ASHM [1]Australasian Society for HIV Medicine. The peak Australasian organisation representing the medical and health sector in HIV/AIDS and related areas. ) was held in Hobart, Tasmania, from 24-27 August.

Bringing together clinicians, medical scientists, social researchers and community representatives, this annual conference is Australia’s de facto national AIDS conference. While it may not boast the cutting-edge science, celebrities and hoopla of an international event, its capacity to bring current issues home to an Australian context makes it a key part of the calendar.

This is the first time that the ASHM Conference has been held in Hobart but, as NAPWA President Gabe McCarthy noted in the opening session, the city was the host of one of the landmark events in Australia’s HIV/AIDS history –1988’s Third National AIDS Conference.

On the last day of that historic conference, a group of positive people took to the stage and publicly announced that they were HIV positive and would no longer remain invisible. This brave and extraordinary step, following several days of sometimes bitter and acrimonious debate, is widely seen as the birth of Australia’s PLWHA movement.

It was fitting, then, that in Hobart in 2005, people living with HIV/AIDS made perhaps their biggest impact yet on the ASHM conference, with a variety of presentations focusing on research, health promotion and the lived experience of people living with HIV/AIDS.

Named in honour of a former president of NAPWA, the Phillip Medcalf Memorial Symposium was a highlight of the conference.

NAPWA treatments spokesperson John Daye gave an enlightening presentation on salvage [2][salvage therapy] A treatment strategy for managing HIV in people who have developed resistance to existing therapies. therapy, reporting back from a workshop convened by NAPWA’s Treatments Policy Group.

A key issue here is the difficulty in defining just what ‘salvage therapy’ is. “There is no moment when drugs stop working,” he said, “and no magic spell to recite when they do.”

Outlining the various strategies being used by clinicians, Daye spoke of the tendency towards “buying time” for people with limited treatment options and the challenges that creates for them. There is a need to think strategically, and to strengthen relationships between positive people, treatment advocates, industry and the researchers, he said.

A presentation from Kathy Petoumenos on the Australian HIV Observational Database looked at the causes of death among people living with HIV/AIDS in Australia. While deaths from AIDS-related causes have declined among HIV-positive people in Australia since the advent of HAART [3]Highly Active AntiRetroviral Therapy ??? aggressive treatment of HIV infection using several different drugs together., positive people are at higher risk than the general population from non-AIDS-related causes.

Of the 105 deaths recorded in the database between 1999 and March 2004, 42 (40 percent) were from HIV-related causes, 55 (52 percent) were non-HIV-related and 8 were unknown. Major non-HIV-related causes of death included cancers, cardiovascular disease and liver [4]A large organ, located in the upper right abdomen, which assists in digestion by metabolising carbohydrates, fats and proteins, stores vitamins and minerals, produces amino acids, bile and cholesterol, and removes toxins from the blood. failure, and were more common in people with advanced HIV disease.

Stephen Gallagher of ACON gave a thoughtful presentation on levels of HIV treatments literacy among people with HIV/AIDS. Looking at enquiries from positive people to ACON’s treatments information service and issues raised at ‘Genesis’ workshops for people recently diagnosed with HIV, Gallagher identified several areas where misconceptions seem to be occurring.

While it’s to be expected that recently diagnosed people will have difficulty assimilating a broad range of treatments information, Gallagher also noted that many people diagnosed less recently need to be updated on more recent developments – much of their knowledge is out of date by 5-10 years, he said.

Brent Allan of the Victorian AIDS Council looked at the changing role of Positive Living Centres, and presented the results of a “Snapshot Survey” of the Melbourne PLC. Positive Living Centres are “not so much buildings but spaces,” Allan said, and outlined the ways in which these services support people with HIV, especially those with complex needs.

A similar theme was picked up by John Hall, also of the Victorian AIDS Council, in a poster presentation on housing and HIV. Hall noted that as many as 20 percent of the Melbourne PLC’s membership had inadequate, transitional or otherwise unsuitable housing. Hall presented a number of case studies outlining the negative consequences of inappropriate housing.

Echoing Stephen Gallagher’s call to “not forget the small stuff,” Hall’s presentation called for a “back-to-basics” approach to health management for positive people.

NAPWA President Gabe McCarthy presented an oral poster which canvassed the concerns of positive women about antenatal testing for HIV. Traditionally, HIV testing for pregnant women has been guided by a risk assessment, but more recently there have been calls for a switch to routine testing of all pregnant women. McCarthy argued that the complexity of the issue means that positive women must be consulted before any change of policy.

The issue of organ transplants for people with HIV/AIDS was discussed in a lively debate. While in the past people with HIV had been excluded from consideration for organ transplants, with improving HIV treatments this is now changing.

Francesca Torriani of the University of California argued that having HIV should not prevent people from receiving organ transplants, and outlined the increasing need for these. End-stage liver disease is now the biggest killer of people with HIV/AIDS in the US, where a large proportion of the HIV-infected population is also infected with hepatitis C.

In Australia, by 2015 about 20,000 people will have hep C-related cirrhosis and about 10 percent of these will need liver transplants, she said. Evidence from the US has shown that people with HIV respond well to transplants, with comparable survival rates to their HIV-negative counterparts. “There’s no reason not to transplant into HIV patients if their HIV infection is well controlled,” she said.

Ed Gane, director of the New Zealand Liver Transplant Unit at Auckland Hospital, presented the opposing argument. Decisions about transplantation should be made on the basis of the best-possible utilisation of available resources, he said. While kidney transplants to positive people had generally good outcomes, he pointed out that in HIV/HCV [5]Hepatitis C virus. coinfected patients, hepatitis C becomes much more aggressive following liver transplantation. The focus should be on hep C treatment, not transplants, he argued.

Marina van Leewuen of the National Centre in HIV Epidemiology [6]The branch of medical science that deals with the study of incidence and distribution and control of a disease in a population. and Clinical [7]Pertaining to or founded on observation and treatment of participants, as distinguished from theoretical or basic science. Research presented some preliminary data from a study looking at the prevalence of anal cancers in homosexual men. These cancers are quite rare but occur about twice as often in gay men compared with the general population. The aim of the study is to determine the rates of anal squamous intraepithelial lesions (ASIL), a precursor to anal cancer that can be detected via pap smears. The study will enrol 200 HIV-negative and 125 HIV-positive gay men.

The preliminary results, based on a subset of the data, found that the prevalence of ASIL was significantly higher among HIV-positive men (62 percent versus 28 percent). While these results are obviously of concern, they don’t necessarily mean higher rates of anal cancer in positive gay men. The natural history of this disease is still not well understood and part of the objective of this study is to understand better the link between ASIL and anal cancer and the usefulness of smear tests as a diagnostic tool.

In a satellite forum entitled ‘Drilling into the data’, researchers from the Australian Research Centre in Sex, Health and Society discussed some new analyses of the data from the Futures 4 survey conducted two years ago. Marian Pitts looked at the impact of growing older on people living with HIV/AIDS. The majority of Futures respondents over 50 years old have at least one other major health condition besides HIV, she said. They typically have fewer treatment options and access HIV and non-HIV services less, and may have fewer sources of social and emotional support.

A session entitled ‘HIV Research – Community Perspectives’ generated a great deal of energetic discussion. John Rule from NAPWA presented a thought-provoking paper looking at the relationship between the HIV community and the research sector. Kirsty Machon, also from NAPWA, took the same theme a step further, asking how we can define the value of research and arguing that better research, not more of the same, is needed.

Bill Whittaker and Jo Watson presented an outline of a major discussion paper, developed by NAPWA, which examines the impact of increasing complexity on HIV treatment, care, research and prevention. The paper argues that it is time to rethink the model of HIV care in Australia to better serve the needs of positive people and support the clinicians who care for them.

With so much serious discussion, a NAPWA-sponsored ‘hypothetical’ at the end of the second day brought much-needed comic relief. Entitled “Future Shock”, the scenario took a panel of medicos, researchers and positive people ten years into the future, to the year 2015. Advances in genetic modification had delivered a most unusual new HIV treatment, the panel was told – one which could be sexually transmitted.

The panel were taken out of their comfort zones and asked to consider how governments, researchers and pharmaceutical companies might grapple with such a frightening, yet captivating idea.

From 1988, when HIV-positive Australians first stepped into the public eye and demanded their voices be heard, to 2005, when we play key roles in Australia’s HIV response, and forward into the disturbing but intriguing new world of 2105. Not bad for a few days in Hobart.

• For details of other abstracts presented at the ASHM Conference, including presentations discussing the work of NAPWA’s International Portfolio [8] with positive people in Papua New Guinea, visit www.ashm.org.au [9].