art of hands

December 2003 - February 2004

Mainstream print media reporting of HIV increases 2000-2003 MICHAEL HURLEY, SAMANTHA CROY AND KIRSTY MACHON examine the approach the mainstream newspaper has been taking in reporting increases in HIV diagnoses and new infections in Australia 1999-2003.

HIV among migrants and Mobile Populations The impact of HIV on people from culturally and linguistically diverse backgrounds was on the agenda at the recent ASHM conference in Cairns. MATTHEW TYNE reports.

Access to HIV/AIDS treatment and care: new inspiration, new friendships ANDY QUAN attended a regional roundtable which focussed on increasing treatment access in ASEAN countries and the role of media in relation to HIV/AIDS.

The changing nature of HIV infection in the UK From 1999 the numbers of new diagnoses rose substantially and rapidly in the UK with the major component of this increase in the number of heterosexually acquired infections. KATY SINKA reports.

A booster for HIV vaccine research ANDY QUAN takes a look at the latest in HIV vaccines.

Search HIV Australia

Mainstream print media reporting of HIV increases 2000-2003

Researchers Michael Hurley and Samantha Croy and Policy Analyst Kirsty Machon have recently been investigating mainstream newspaper reporting of increases in HIV diagnoses and new infections in Australia 1999-2003. They provide a preliminary report on a subset of articles in major metropolitan newspapers reporting increased diagnoses of HIV in Victoria in October 2000 and in NSW/Queensland in May-July 2003.

Reports move between increases in diagnoses and increases in new infections. Mainstream newspaper articles are accompanied of course by radio and television reporting, and reports in the gay and HIV media.

We identified 121 articles in major Australian newspapers by doing a selective search on the LexisNexis Academic database. Articles were either ‘news’ or ‘features’. The number of articles on increases published in this period can be seen in the following graph:

Reporting of increases was at its most extensive during 2002 with articles distributed across the year (n=37). A similar, slightly less intense pattern is emerging over 2003 (Jan-Oct, n=34).

The number of articles in any one month reporting increases peaked in October 2000 (n=16), in August 2002 (n=10) and in May 2003 (n=8). Each peak was related to the release of either state-based or national surveillance data (Victoria Oct 2000; national, Aug 2002; NSW/QLD, May 2002). Sub peaks occur with the subsequent release of state data (Victoria, March 2001), HIV conferences (July 2002; October 2002) and key appointments (Wooldridge Set 2003).

Mainstream print media reporting of domestic HIV/AIDS is now organised around five kinds of events:

1. The release of epidemiological and behavioural surveillance reports;
2. Ritual events: World AIDS Day, 20 year anniversaries, AIDS conferences;
3. Causes celebre: celebrity scandals, reckless endangerment, euthanasia;
4. Breaking news: treatments, vaccines;
5. Media promotion of books and films by/about people living with HIV/AIDS.

Much 1980s representation of HIV linked HIV as a plague virus with gay men as plague carriers. It was an epidemic of signification (Patton 1990;Treichler 1988). In other words HIV was represented as much socially and politically, as it was medically. In countries with early epidemics amongst gay men, such as Britain, the United States and Australia, analysts linked media reporting, homophobia and images of gayness as ‘contagion’ (Altman 1986; Galbraith 1992; Watney 1987; Watney and Guptna, 1990).

To an extent the Grim Reaper campaign of the late 1980s may be seen as delinking gayness and AIDS in Australia, even as it reinforced the collapse of HIV into AIDS and narrated both as death sentences (Lupton 1994). These representations were challenged over time by both activist advocates and in Australian television serials (Wilding 1998).

Representations of HAART broke the public imaging of HIV and AIDS as death sentences in places where treatments were available. ‘International’ imaging of HIV in developing countries largely focussed on infection as out of control and as directly leading to illness and to death.

Mainstream reporting in Australian print media now mostly involves either international disaster or increases in local infections. There is a sub-genre which represents people living with HIV as examples of treatments success.

Media reports of increases in new HIV diagnoses and infections appear within a general media field in which science, politics, public health, funding, morality, illness and death intersect. ‘Increases’ are constructed in relation to the release of HIV surveillance data, whether quarterly or annual. The symbolic power of the data as ‘news’ is related to its status as research. ‘New’ information has news value, political implications, and implications for gay men.

The same information is often relayed to multiple papers either by shared news distribution agencies or within ownership chains (‘Fairfax’-the Age and the SMH). Articles with almost the same content appear with slight variations in headline and take within and across different states.

HIV increase ‘news’ items are rarely front page, but are about as likely to appear on pages 2-8 as pages 9-16.

Victoria 2000

The Victorian figures were released a week before the two annual national surveillance reports on epidemiology. Media commentary on both was led by the then Chair of the Australian National Committee on AIDS and Related Diseases.

The rise in new HIV notifications in Victoria in 2000 was reported in 16 articles between October 2 -13: Age (5); Herald Sun (Melb) (2); Australian (5) and once each in SMH, the Hobart Mercury, Daily Telegraph and Adelaide Advertiser.

• 9 of the 16 articles appeared between 2-4 October;
• The key players quoted were the then Chair of ANCAHRD, the then Victorian Health Minister, and the Executive Director of the Victorian AIDS Council;
• The ANCAHRD chair alleged simultaneous increases in NSW and Victoria and linked ‘small increases in infection’ to ‘a big increase in unsafe sexual practices’ - Age (2/10:1); SMH 2/10:3); Daily Telegraph, (3/10:17), Advertiser (3/10:12).
• The Health Minister spoke of some people ‘becoming a bit blasé’ (Australian, 3/10:8) and ‘complacency’ (Age, 3/10:6) and made links to international travel and to overseas increases.
• The Victorian AIDS Council focussed on a range of gay educational issues.
• No doctors or medical commentators were cited.
• News reports were quickly followed by features on reckless endangerment (Age 6/10), and feckless gay men (Sunday Age, 6/10:4)

Queensland

The rise in new HIV notifications in NSW and Queensland in May 2003 was reported in 10 articles between May 29 and 19 July 2003: Daily Telegraph (3); SMH (2); Australian (2); and one each in the Age, the Courier Mail and the Mercury. Articles quoted:

• Three heads of community-based AIDS organisations (QuAC; ACON; AFAO);
• Medical experts (3) and an epidemiologist (1);
• The then Federal Health Minister;
• A person living with HIV/AIDS.

Reports of rises in HIV generally

• seldom appear on the front page;
• often have a significant gap between attention grabbing titles and body of the article;
• are rarely reported baldly: ‘HIV notifications up 40%’, Age, 3/10/03: 6.
• are often reported in relation to something else:
  - fear: ‘HIV Upsurge Feared as Unsafe Sex Rises’, Sydney Morning Herald 2/10/00:3;
  - threat: ‘Dangerous Liaisons’, Weekend Australian 19/7/03, C13;
  - policy and action: ‘AIDS Strategy to fight 40pc case jump’, Australian, 13/10/00:6; ‘Ad Plan to curb AIDS rise’, Australian 29/5/03: 3;
• are relayed nationally;
• reproduce surveillance reporting in which very small numbers are expressed as percentages thus inflating increases;
• sometimes misrepresent the figures.

Article titles vary discursively and generically (news, features) between:

• News/‘factual’: ‘New HIV Cases Increase 20pc’,Courier Mail, 30/5/03: 11; ‘HIV levels on the Rise’, Daily Telegraph (Sydney) 30/5/03: 13;
• Opinion: ‘Denial Becomes the Language of Casual Sex’, Sydney Morning Herald, 3/7/03: 11; ‘Dancing with Death’, Age, 4/10/00:19.
• (Reported) Admonition: ‘Gay Men Warned on HIV’, Advertiser 3/10/03: 12.
• (Reported) Sensationalism: ‘HIV Upsurge Feared as Unsafe Sex Rises’, Sydney Morning Herald 2/10/03:3; ‘Dicing with Death; Secret life exposed family to AIDS’, Herald Sun (Melbourne) 6/10/00: 22.

‘The Grim Reaper’ (GR) was referred to 14 times between 1999-2003 in titles/lead paragraphs: ‘Revenge of the Grim Reaper’, ‘The Grim Reaper Rides Again’, ‘Fading Of Grim Reaper Scare Leaves Legacy Of Complacency’. Usage is contradictory and occasionally has a vindictive edge. The GR campaign is positioned as having stopped infection.

HIV and AIDS are frequently still confused as synonyms or confusingly linked to each other (‘HIV cases’; ‘AIDS risk growing’; ‘Ad Plan to curb AIDS Rise’) and in speculation on causes of unprotected sex: (‘HIV on increase as AIDS fear subsides’).

‘Complacency’ becomes claim (gay men are ..) and counter-claim (governments are …) setting up blaming as the framework of discussion.

Discussion

The reporting of the Victorian data in 2000 occurred in an intense media burst that set the terms of subsequent discussion. HIV increases were linked to and allegedly caused by behavioural change, gay male complacency and a hovering threat. Speculation created causal ‘figures’ (gay men dancing with death infect others). Sustained safe sex in everyday life is not represented, until perceived as faltering.

It is clear for some time prior to October 2000 that ongoing decreases in the rate of HIV infection were not considered as major news. The recurrent visibility of ‘the Grim Reaper’ effaces gay HIV education and gay safe sex cultures.

Reporting of the NSW/Queensland data saw increased connecting of HIV and sexually transmitted infections (STIs) and inclusion of sexual health experts. ‘Safe sex’ becomes a cover-all prevention panacea.

Reporting of HIV buys into pre-existing discourses of an AIDS ‘epidemic’. ‘Increases’ are dramatised by linking the Australian present to an international present and/or an Australian past (Grim Reaper), thus re-installing crisis signifiers. Gay men and their sexual practices are represented as major destabilising elements.

Couldry (2003): the media ‘like the education system, are both mechanisms (of representation) and source (of taken-for-granted frameworks for understanding the reality they represent)’.

References

Altman, D. (1986) AIDS and the New Puritanism, Pluto, London.

Couldry, N. (2003) ‘Media, Symbolic Power and the Limits of Bourdieu’s Field Theory’, Paper 2, LSE Electronic working papers.

Galbraith, L. (1992) ‘AIDS: How the gay press told the story’, NAB, July.

Lupton, D. (1994) Moral Threats and Dangerous Desires.

Patton, C. Inventing AIDS, Routledge, New York.

Treichler, P. (1988) ‘AIDS, Homophobia and Biomedical Discourse: An epidemic of signification’, in Crimp, D. (ed). AIDS: Cultural analysis, cultural activism.

Watney, S. (1987) Policing Desire.

Watney, S. and Guptna, S. (1990) ‘The Rhetoric of AIDS’, in Boffin, T. and Gupta, S. (eds) Ecstatic Antibodies. Resisting the AIDS mythology, Rivers Oram Press, London.

Wilding. D. (1998) AIDS and Pro-social Television. Industry, policy and Australian television drama, PhD, QUT.

Michael Hurley and Samantha Croy work for the Australian Research Centre in Sex, Health and Society. Kirsty Machon works with the National Association of People Living with HIV and AIDS

Top

HIV among migrants and Mobile Populations

Research on HIV/AIDS and people from culturally and linguistically diverse backgrounds and the impact of HIV on individuals and populations were highlighted in a migration/mobility symposium at the recent ASHM conference at Cairns. MATTHEW TYNE reports.

At this time, one in every 35 persons worldwide is an international migrant. In 2002, while 22 million persons were refugees and internally displaced, another 4 million were trafficked for purposes of labor and sexual exploitation. In addition, each year there are some 700 million travelers that cross international borders.[1]

Migration status may change over time. A migrant may arrive on a business visa and later become a permanent resident and citizen. A person with citizenship in Australia is likely to maintain very strong links with his/her country of origin. This may include cultural, religious, social practices and beliefs and/or travel to that country on occasions.

For many migrants other issues may dominate rather than concerns about HIV infection, even if they are from a high HIV prevalence country. Recently –arrived migrants may be more concerned with food, housing, finding employment and negotiating life in a new society. People may be dealing with the psychological consequences of persecution or have arrived here as international students with expectations to excel in their studies.

Perhaps it is not migration or mobility in themselves that increase vulnerability and risks for these populations however, behaviour maybe quite different when one is away from home, free of the norms that guide behaviour in stable communities. [2]

Migrants and mobile people may have limited access to accurate HIV information or health services. Indeed they may avoid contact with authorities including health services and might be inexperienced in dealing with other community-based services that could provide assistance.[3]

A person’s migration status usually determines their eligibility to access to health care and treatment. However, being eligible for health care is only part of the problem, as many people from culturally diverse backgrounds are unaware of the services available.

National Surveillance Data

Research presented by the National Centre in HIV Epidemiology and Clinical Research indicates that late HIV presentation disproportionately affects people born in Asia, sub-Saharan Africa, South and Central America and Europe (excluding UK and Ireland). More than 50 percent of people diagnosed with AIDS in last five years who were born in these regions were late HIV presentations. Over-representation of some regions of the world in national HIV data continues with people born in sub-Saharan Africa accounting for 5.5 percent and those born in Asia 7.8 percent of national HIV notifications for 2002.[4]

Country of birth data has been collected in AIDS diagnoses since the early 1990s. While AIDS cases among people born in English-speaking countries and European countries have remained stable or decreased from 1993-1997 compared to 1998-2002, AIDS cases have doubled in the latter period among those born in Asia and tripled among those born in sub-Saharan Africa. [5]

Migration to Australia from high prevalence countries or countries with emerging epidemics continued to grow between the 1996 and 2001 census[6]. Cultural and familial ties facilitate the continued mobility of many individuals and communities to and from high prevalence regions.

The impact of culture

Henrike Korner [7]presented early findings from research on Living with HIV and Cultural Diversity.[8] Of the fourteen participant people living with HIV/AIDS (PLWHA) interviewed, four were women and six had children with participants’ ages ranging from 32 to 58. The year of HIV diagnosis ranged from 1984 to 2002.

A dominant theme for participants interviewed so far was that they experienced their HIV diagnosis as a “form of death sentence.”[9] Death was a recurring theme throughout the interviews. This response was irrespective of participants’ country of birth, when they were diagnosed or whether they were diagnosed in Australia or overseas.

Korner suggests that participants’ knowledge about and experience of HIV is strongly influenced by the their respective country of birth and cultural background.

Even amongst participants recently diagnosed in Australia, their country of birth heavily influenced their knowledge and experience of HIV.

This may manifest in beliefs including: a lack of HIV treatment, no support services, and that there is no difference between HIV and AIDS.

Another key factor in attempting to understand their diagnosis was language and its relationship with knowledge. Though many participants were diagnosed in Australia, their knowledge about HIV/AIDS was obtained in a language other than English.

One participant said that in her language there was no word for HIV and therefore “we presume that it’s AIDS….and we believe that it’s terminal.”

A male participant, who migrated to Australia alone with very little knowledge of English, was diagnosed one month after arrival. He did not know anyone and could not speak to anyone about his status.

Counselling and the provision of information around a positive diagnosis were not always offered to these participants, especially if their diagnosis was part of health checks for migration purposes.

When asked if she had received any counseling/information after being given her diagnosis, a participant replied, “No, they just let me stay for about 20 minutes….They just told me to go.”

As well as having an impact on a person’s understanding at the time of diagnosis, cultural values affect a person’s ability or inability to disclose their HIV status. Health workers maybe the only people who know of the person’s status and hence become the sole form of support to that person.

Fear of gossip about their HIV status was a key issue for many in the study. This also closely relates to the fear of “loss of face”, restrictions and attitudes to sexuality/sexual behaviour and obligations to family. Being identified as being HIV positive was associated with being gay, an injecting drug user and/or sex worker and would bring shame to the person’s family. One gay male participant was fearful that gossip in Australia would eventually reach his family in his home country. This would cause his family great distress and he would “lose” his family. His method of limiting gossip about his HIV status was to “stay by myself, not to let anyone know.”

The early findings from the study indicate that participants have had to address two major life challenges simultaneously: adjusting to life in a new country and living with HIV.

Addressing the many issues involved in migration/mobility and HIV poses challenges for health service delivery and policy development. It also raises difficult legal, medical, social and ethical questions that challenge the HIV response in this country. The HIV sector can however play a major role in advocacy, appropriate service development for people living with, or at risk of, HIV from culturally and linguistically diverse background just as it has for other marginalised groups within our community.

Matthew Tyne is the Senior Project Officer at the Multicultural HIV/AIDS and Hep C Service, Central Sydney Area Health Service.

Top

Access to HIV/AIDS treatment and care: new inspiration, new friendships

ANDY QUAN reports on the Jogjakarta Roundtable Meeting: From International Collaboration towards National Self-Reliance, Jogjakarta, Indonesia, 1- 4 September 2003.

A regional roundtable on access to HIV/AIDS treatment entitled “From International Collaboration towards National Self-Reliance” saw over 80 participants and an organising team of 10 share experiences of increasing treatment access with a focus on ASEAN countries, and the role of media in relation to HIV/AIDS. Sixty percent of the participants came from all parts of Indonesia, from Sumatra to Papua. The rest came from thirteen countries including Laos, Vietnam, Malaysia, India, Japan, Cuba, USA and Australia. They included people living with HIV/AIDS (PLWHA), healthcare workers, community representatives and activists, NGOs, journalists and research-based and generic AIDS drug manufacturers.

Organisers credit their inspiration to a meeting held one year ago in Canberra, Australia: the International Roundtable on Increasing Access to HIV Treatment in Resource Poor Settings. Four participants from Indonesia attended: Dr. Samsuridjal Djauzi, Kurniawan Rachmadi, Chris Green and Henrianto Primarendra. On their return they decided to organise a second Roundtable. Under the auspices of Pokdisus, the Working Group on AIDS of the Faculty of Medicine of the University of Indonesia, not only did they organise the Jogjakarta Roundtable Meeting (JRM) to move treatment access forward on a regional as well as national level, but they also worked tirelessly over the last year with many partners to increase access to treatment in Indonesia.

In May 2003, Pokdisus contacted the organisers of last year’s meeting in Canberra to discuss the idea of a second Roundtable. They then talked to other NGOs to co-host the meeting; the Jogjakarta Institute of Research, Education and Publications (LP3Y), the Pelita Ilmu Foundation, the Jogjakarta PLWHA Network (JOY), the Jakarta NGO Forum and the Jakarta Counselor Forum all came on board. They searched for donor agencies, invited speakers and moderators, and spread the word. They decided to limit sponsors to donations of $USD10,000. With the support of the Ford Foundation, WHO, AusAID, the Rockefeller Foundation, participants, volunteers, and other organisations that covered travel expenses for the meeting, they managed to host a successful conference with a modest budget.

Meeting format

Over the three days of the meeting, participants heard three lectures, 10 case-studies and participated in small group discussions and group reflections. The third day focused on concrete ways to collaborate and to act on increasing access to treatment. Participants also visited the famous Borobodur temple – which allowed them to relax and reflect, discuss issues further and meet each other outside of a formal setting.

The meeting was opened by Dr. Dodi, speaking on behalf of Mr. Jusuf Kalla, the Coordinating Minister of People’s Welfare of Indonesia. He noted UNGASS commitments to access to treatment and remarked that access to antiviral therapy is no longer only a health problem but a “serious problem of justice.” He highlighted positive developments such as the Global Fund, the WHO guidelines for Scaling Up Antiretroviral Therapy in Resource-Limited Settings and progress in Indonesia, and invoked the “spirit of Canberra.”

Kurniawan Rachmadi, the Chairman of the organising committee, welcomed participants. “For me, today is like a dream.” He described the process of organising the meeting, inspired by the Canberra Roundtable and rallied participants to use the meeting well: “There is no need to fear because there is always a way when there is a will.”

Three lectures followed the opening speeches. Dr. Mudrajat Kuncoro presented an analysis of global capitalism and how nations might try to position themselves in an international economic system that has changed through globalisation. Elizabeth Reid, the Convener of the Canberra Roundtable, described that meeting from planning stages to follow-up. In particular, she presented the Strategic Framework developed by participants on the many components needed for increasing access in the region. Finally, Dr. Ying-Ru Lo from the WHO South East Asia Regional Office presented the WHO Guidelines for ARV Treatment in Countries with Limited Resources.

A complete set of powerpoint presentations and short summaries of each session is available at the JRM website:

http://www.pokdisus-aids.org/jrm_site.htm

The Indonesian example

“Perfectionists wait forever.” So opens a new publication, “From Small Steps Towards a Giant Leap” based on the experiences of the Working Group on HIV/AIDS at the University of Indonesia in Improving Access to Generic ARV Drugs in Indonesia. In honest and simple language, the book tells the stories of how a few committed individuals used perserverance and creativity to overcome obstacles, create partnerships with the government, media, healthcare workers and industry, and within a year to scale-up from the dozen or so people living with HIV/AIDS (PLWHA) who could afford treatment to almost one thousand. Their aims for 2003 were to serve 2,000 PLWHA, get antivirals on the essential drugs list, get government subsidies for antiviral drugs and raise funds for poor PLWHA. Already they have achieved some of these goals: the Indonesian government has agreed to subsidize about half the costs of a monthly antiviral package for 2,000 PLWHA and various partners initiated a program to provide antivirals to 40 poor PLWHA over one a half years. Pokdisus further aims to get 10,000 PLWHA on ARV by 2005.

This case study was presented in book form rather than a lecture, and elements of it were referred to throughout the meeting. It provided perhaps some of the strongest lessons of this year’s Roundtable displaying advocacy skills, partnership building, and determination which could hopefully be replicated in many countries and contexts. It is hoped that the report will be available by the end of the year at: http://www.pokdisus-aids.org/jrm_site.htm.

Final discussions and networking

In open conversation, participants talked about the themes that came up over the last days, discussed actions that they planned for their own countries, identified needs and talked about how to keep in touch with each other after the conference.

The Strategic Framework from the Canberra Roundtable, a list of eleven recommendations for scaling up access to treatment, was revisited by participants of the Jogjakarta Roundtable. With minor amendments, it was affirmed as a useful tool to be used by participants and anyone committed to the issue in the region.

As in Canberra, it was pointed out that the Roundtables are still speaking about small successes. These are important to acknowledge and learn lessons from, but huge efforts to scale-up with adequate resources will be needed in order to even consider reaching the WHO target of 600,000 PLWHA in the Asia-Pacific on HIV treatment by 2005.

Finally, Vietnamese participants offered to explore the possibility of their hosting a third Roundtable, and a session for the media was held to inform local and national journalists of the results of the last days. Treatment access is “a question about hope,” said Dr. Samsu, opening the press conference which included a discussion of next steps in Indonesia such as training doctors and other healthcare workers through Indonesia on HIV/AIDS and access issues. Already, major articles about the conference have appeared in national Indonesian press.

It is likely that there will continue to be meetings in the region on access to treatment. Future conferences and gatherings need to involve and engage new decision-makers and advocates while continuing to inspire people who have been to meetings before. They need to provide new stories and case studies that demonstrate success and inspire us to new successes.

Participants’ responses

Every conference participant could have a different story to tell about their experience of the Roundtable.

Indonesian journalist Ms. Munarsih Sahana commented that she was very moved by this meeting and will try to get more stories on access to treatment on the radio in the next months.

Ms. Daxa Viradia, the Secretary of the Gujarat State Network of People with HIV/AIDS (GNNP+) will share what she learned at the conference with her group. “It was my first time outside of India so I was very encouraged.”

Mr. Hj. Hamdillah Bin HJ Metarsat is from the Brunei Darussalam AIDS Council in a country that has few HIV cases. He was encouraged from the meeting to look at how to involve PLWHA in their organisation. “I gained a lot of knowledge,” he said of the Roundtable.

Many participants commented on the strength of the Indonesian example. Increasing access from a handful of people to one thousand is a great example of scaling-up. How can we achieve this in other countries that only have a handful of people on treatment? How can we move to the next step?

Just after the conference ended, a young man, newly diagnosed with HIV, called JOY, the local PLWHA group, for support. In tears and distress, they offered to meet with him. Because of the conference, he ended up chatting with PLWHA from Bali, Papua and Jogjakarta and after a while was laughing. “I think it’s OK to be HIV positive as long as they’re all as crazy as you,” he told the group. It’s an inspiring story about solidarity but perhaps can also inspire us to action. When he needs treatment for HIV, will he able to get it?

During one of the last sessions, the participants tried to capture the “spirit” of the meeting and agreed that it was embodied in the following words: Solidarity, Hope, Thinking Big, Acting Now and the Spirit of Volunteerism. It is hoped that the spirit of both the Canberra and Jogjakarta Roundtables can inspire individuals, organisations and governments throughout the region to move the agenda on treatment access forward in concrete and expeditious ways. The organisers and particiants of the Roundtable invite all of us to take up this challenge.

Presentations, summaries, a report on next steps, and other materials will be is available at the JRM website: http://www.pokdisus-aids.org/jrm_site.htm

Andy Quan attended the Jogjakarta Roundtable Meeting representing both the Asia-Pacific Council of AIDS Service Organisations (APCASO) and AFAO.

Top

The changing nature of HIV infection in the UK

By Katy Sinka

There are several surveillance systems for HIV in operation in the UK. Reporting of new diagnoses of both AIDS and HIV and notification of deaths have been in place since the start of the epidemic and were complemented in 1990 by a series of unlinked anonymous serosurveys, which allow an estimate of undiagnosed infection in both high and low risk populations (sexual health clinic attenders, injecting drug users, and pregnant women). Annually a diagnosed prevalence survey reviews the number of people receiving HIV related care. In combination, these voluntary and confidential surveillance systems, allow a comprehensive picture of the epidemic to be pieced together. They show the dual impact of treatment advances and the effects of migration from high prevalence countries on the pattern of the HIV epidemic in the UK over the last decade.

In the mid 1990s the epidemic was in a more or less steady state. New diagnoses of infection were similar in number to the HIV related deaths occurring each year and the diagnosed prevalence was stable. From 1996, in the UK, along with other wealthy countries the availability and widespread use of highly active antiretroviral therapy (HAART) led to a remarkable drop in AIDS cases and HIV related deaths. This fall steadied after a few years and both AIDS and deaths have continued to occur at a low level (fewer than 500 deaths each year). The majority of these are in individuals who are diagnosed late, and who, as a result, do not gain the full benefit from available treatment.

While the treatment effect continued during the 1990s the beginnings of an increase in the number of new diagnoses of HIV were apparent. From 1999 the numbers of new diagnoses rose substantially and rapidly, almost doubling in three years (from 3,079 in 1999 to 5,711 so far reported for 2002). The major component of this increase was the rising number of heterosexually acquired infections, but there were also sustained levels of new diagnoses in men who have sex with men (MSM). In 1999 new diagnoses of infections acquired heterosexually overtook those in MSM.

Although diagnoses of heterosexually acquired infections have been increasing annually throughout the span of the UK epidemic, the rise has been exceptionally steep since the late 1990s. Cumulatively (based on reports to the end of September 2003) 81percemt (16,096 of 19,995) of these heterosexual infections were acquired abroad, and 70 percent (13,909) were in people from, or who have visited Africa. Eleven percent (2,133) were infected heterosexually in the UK from a partner who was also infected heterosexually. While the numbers of diagnoses have increased, these percentages have remained fairly constant over the last decade. (figure 2)

Although other western European countries have observed similar trends in new diagnoses associated with sub-Saharan Africa, the traditional links to the Commonwealth countries of Africa (which carry half the global burden of HIV infection) mean that the UK has been particularly affected. Historically the major contribution to new diagnoses in the UK has been from people from, or who have acquired HIV infection in, East Africa, especially Uganda. In the last four years there has been a major shift, with an increasing influence of South Eastern Africa, and especially Zimbabwe, which in 2002 accounted for around half of all the UK diagnoses of infections acquired in Africa.

Increasing numbers of heterosexually acquired infection have led to an associated rise in the numbers of HIV infected women giving birth. The universal offer and recommendation of antenatal HIV screening introduced in 1999 aimed to reach 80 percent diagnosis rates in pregnant women by the end of 2002. The strategy has proved very successful and the proportion of babies born to HIV positive women who become infected has fallen markedly, with effective intervention offered to those women who are diagnosed.¹

In MSM what had been a steady if not a declining trend in new diagnoses of infection during the 1990s has reversed during the last three years. In 1998 and 1999 the lowest number of new diagnoses in MSM recorded during the span of the epidemic were reported (around 1,350 each year). For both 2001 and 2002 there have been 1,700 diagnoses reported so far, and the expectation is that once reporting is complete, the actual increase will be larger and that new diagnoses in 2003 will continue the upward trend. Some of these new diagnoses will be of long standing infections but there is evidence for ongoing transmission of HIV among MSM. Reported seroconversion following previous negative tests; laboratory evidence of recent infection and no apparent ageing cohort (where diagnoses relate to an episode or time of high levels of infection occurring some time previously) all support this argument.

Transmission of HIV through injecting drug use has remained low in the UK. Although there is evidence of increased sharing of needles and injecting equipment ², there has been little transmission of HIV, following the peak of infection in the early 1980s. Most new diagnoses of HIV in injecting drug users are long standing, and new diagnoses continue to decline, with around 100 new diagnoses a year.

The sustained low numbers of HIV related deaths and the rise in new diagnoses are contributing to a large increase in overall prevalence of diagnosed HIV. There was a 20 percent rise between 2001 and 2002, with over 30,000 people accessing HIV care services in England, Wales and Northern Ireland ³. (Scotland records prevalence separately). The diagnosed prevalence has doubled since 1997, when 15,074 individuals were reported to the survey. These survey data are combined with Scottish data and estimates of undiagnosed infections to arrive at an overall prevalence figure for the UK. In 2002 an estimated 49,500 adults were living with HIV in the UK, and 31 percent were not aware of their infection ⁴.

In the short term it seems likely that these trends will continue and numbers of new diagnoses will continue to rise and prevalence to increase. For sexual health clinics this will add to the substantial treatment costs and clinic workloads, which have increased greatly over the last few years. This is occurring at a time when there is increased pressure from rises in all other sexually transmitted infections, and difficulty in obtaining timely clinic appointments could result in some diagnoses of HIV and other sexually transmitted infections (STIs) being missed.

Looking to the medium term there are a number of uncertainties that make the future pattern of HIV in the UK difficult to predict. In particular, whether government policies on migration will affect the movement of HIV infected people between countries with a high prevalence of HIV (particularly from sub-Saharan Africa) and the UK; whether HAART will continue to delay death; whether the incidence of new HIV infections in the UK increases and what inroads can be made into reducing the undiagnosed fraction of the epidemic, either through new initiatives to improve testing, or through early recognition of HIV related symptoms.

In 2001 the UK government published a national HIV and sexual health strategy. The strategy includes specific aims to reduce the transmission and the undiagnosed prevalence of HIV and STIs and prioritises HIV prevention efforts targeting MSM and African communities and continued provision of needle exchange facilities for injecting drug users.

Acknowledgement

The continuing collaboration of those who contribute to HIV surveillance in the UK is gratefully acknowledged. Without their generosity, time and effort, the current level of understanding of the epidemic could not have been attained.

Note

Figures for the United Kingdom are available through collaboration between the Health Protection agency (Communicable Disease Surveillance Centre), the Scottish Centre for Infection and Environmental Health and the Institute for Child Health (London).

References

1 PHLS (April 2003) HIV infection in women giving birth in the United Kingdom – trends in prevalence and proportions diagnosed to the end of June 2002. Commun Dis Rep CDR Wkly [serial online] 2003 [cited 5^th November 2003]; 13 (13): HIV/STIs. Available online at http://www.hpa.org.uk/cdr/PDFfiles/2003/cdr1303.pdf

2 Unlinked Anonymous Surveys Steering Group. Prevalence of HIV and hepatitis infections in the United Kingdom 2001. London: Department of Health, 2002.

3 Health Protection Agency, Communicable Disease Surveillance Centre – Survey of Prevalent HIV Infections Diagnosed. Available online at <http://www.hpa.org.uk/infections/topics_az/hiv_and_sti/publications/sophid2002.pdf>

4 Health Protection Agency – Communicable Disease Surveillance Centre. HIV and Sexually Transmitted Infections annual report (in press) to be available online at http://www.hpa.org.uk

Katy Sinka works with the Communicable Disease Surveillance Centre, Health Protection Agency in London, UK

Top

A booster for HIV vaccine research

Andy Quan reports on the AIDS Vaccine 2003 conference, summarising the main issues from a community perspective to present the information on science and research in an accessible way.

The AIDS Vaccine 2003 annual conference took place in New York City from 18-21 September 2003 with over 1,200 participants from over 50 countries. They included researchers, epidemiologists, public health officials, policy makers, industry representatives and community advocates. The conference chair, Beatrice Hahn, in her opening remarks, pointed out that more international abstracts and applications had been received than ever before. While primarily a scientific conference, nearly twenty community scholarships were awarded to advocates from countries such as Nigeria, Ghana, and Mexico. Representing AFAO, I also received a scholarship.

The Starship Enterprise

Conference presentations and posters looked at all aspects of HIV vaccine development -

• Basic scientific studies which might help us to understand how HIV or the immune system works and therefore help us to develop a vaccine, how the current vaccine candidates work in pre-clinical trials and how they are working in human trials. Epidemiological research on where and how HIV is spreading.
• Social research at attitudes of trial participants and the general public.
• Mathematical models predicted how a vaccine might be used and what impact it may have on the wider community
• Other studies looked at how to establish infrastructure for trials and work with communities.

There were few surprises on the vaccines themselves. While there are nearly 40 clinical trials in early stages around the world, only one product is about to enter a large-scale clinical trial at this time, the Prime-Boost HIV vaccine ALVAC vCP1521 and AIDSVAX B/E to be trialed in Thailand’s Rayong and Chonburi provinces. In the absence of a groundbreaking announcement about current HIV vaccines, the biggest announcement at the meeting was not of scientific discovery.

Following on from an article written by key vaccines scientists and policymakers that appeared this year in Science magazine, it was announced that the Global Vaccine Enterprise has been established with funding from the Gates Foundation. The Enterprise seeks to provide much-needed coordination and leadership to what has been a disparate movement to find an HIV vaccine. Better collaboration between different vaccines initiatives is needed. Concerted political advocacy is necessary both to support trial sites and to find funding for vaccines research and trials. The Enterprise has established goals, written guiding principles and six working groups have been established. A head office was set up in Lausanne, Switzerland in late 2003.

Progress in basic science

There seems to have been greater progress in terms of basic science and the “antibody” question than in vaccine trials. Although the ultimate objective of a HIV vaccine is to prevent HIV infection in the first place, a current and worthy objective is to understand how we can help the body clear an HIV infection after its occurrence. However, since this has never been reliably documented (a situation unique to HIV), scientists have no model to work from. The trickiest part is the nature of the HIV virus which is hard to find or get a fix on as it hides in other cells, or mutates in response to antibodies or treatment. One poster even reported that in a pair of HIV positive identical twins, there was evidence of divergent HIV evolution! Still, new advances in technology have allowed scientists to gain a better understanding of HIV, the human immune system, and how they interact.

Two main approaches have been tried to develop a vaccine. Early attempts focused on finding “neutralizing antibodies”, stimulating the immune system with parts of the HIV virus in the hope that the body would recognise an infection and be able to prevent it. The new wave of vaccines have all concentrated on stimulating “cell-mediated immunity”. This type of vaccine tries to help the body make types of cells that will find and eliminate infected cells (killer t-cells). While this has been more promising than early attempts, it has been shown that this method might control the course of disease, but would not eliminate HIV entirely. Thus, a broad consensus has emerged that the next generation of vaccines will need to combine these techniques somehow, and produce both neutralising antibodies and cell-based immunity.

Plenary sessions at the conference were organised around a range of scientific questions and looked to a broad range of sources for inspiration such as ‘Can studies on Human Leukocyte Antigens (HLA) help vaccine development?’, ‘Examinations of the influenza virus,’ ‘Dendritic cells’ and ‘Structural biology.

Following up VaxGen

In February 2003, VaxGen announced preliminary results from the world’s first large scale trial of an HIV vaccine in humans, the AIDSVAX trial. This trial was the source of a number of presentations. While the possibility that the vaccine was efficacious in particular racial groups has not gained credence, VaxGen is now pointing to results of higher antibody responses in black trial participants and recommends further studies. However, an observer pointed out this finding is not unique to this trial. Chris Collins from the US-based AIDS Vaccine Advocacy Coalition (AVAC) looked at inaccurate reporting in the media after the first results were released. Collins stated that: “better communication and coordination were needed among interested stakeholders for this and future vaccine candidates.”

Risk-behaviour

A number of presentations asked whether the behaviour of trial participants was influenced by taking part in a vaccine trial. It was reported that risk behaviour among about 700 gay men in the Vax004 Phase III trial decreased over the 18 months of the trial. However, it decreased less than the risk behaviour of 700 gay men in a non-trial group taking part in comparative research. In an overall look at the 5,100 gay men in the VaxGen trial in North America and Europe, sexual risk behaviour remained high throughout the entire trial. Needle-sharing and drug-taking tended to decrease in the trial participants in the VaxGen trial in Thailand, but there were some increases in speed use, and the injection of midazolam (a sleeping pill also known as Dormicum) which participants might have been using to deal with withdrawal symptoms. Overall, studies on risk behaviour seemed to indicate that while risk behaviour didn’t increase, neither did it decrease in most situations.

Other issues

• Another issue raised included how to deal with the diversity of the HIV virus. Researchers from St. Jude’s hospital in Memphis have started an early trial of a vaccine that includes parts of 23 different HIV clade envelopes.
• Concern was flagged for the need for international site development for trials. Currently, there are about 50,000 trial participants in the world, and there are aims to scale this up to 120,000. For this to happen, there needs to be extensive work in setting up the infrastructure both for hosting clinical trials, and for supporting the community and other stakeholders.
• The conference bowed to the international nature of vaccines research by giving prominent speaking positions to African speakers to give an “African perspective” on HIV vaccines. They acknowledged the severity of the epidemic in this region and the need for an HIV vaccine, and spoke of the African AIDS Vaccine Program, a model for regional collaboration and cooperation. Could this be useful for other regions?
• What if a vaccine is found that is only partially effective? Miles Davenport from the University of New South Wales presented a model that showed that a vaccine that reduced viral load but didn’t prevent infection would still have the potential to reduce the spread of HIV, particularly in fast-growing rather than slow-growing epidemics.

IP issues

For the first time ever at one of these conferences, a panel session on intellectual property (IP) was held, featuring representatives from a public agency, the pharmaceutical and biotech industries, International AIDS Vaccine Initiative (IAVI) and an IP lawyer. It’s a “thicket of brambles” said lawyer Gladys Monroy from Palo Alto, California. HIV vaccines are composed of so many different parts, whether materials or processes, that it is difficult and time-consuming to even figure out who owns which IP. Just for HIV 1 and its genetic components – env, gag, tat, rev or combinations of them – there are 94 separate owners of 241 patents. What are needed to speed HIV vaccine development, she said - and the rest of panel agreed - are agreements and covenants that materials can be freely used for research so that scientists can determine efficacy on the best product or process, rather than on what is most easily available. Various other proposals were mentioned around licensing, patent pools, and tiered royalties. It is clear that further discussions on this issue need to take place and with the relevant stakeholders, not just interested conference-goers. Who can coordinate this, asked community advocates at the end of the session, since the need is so clear? But no answer was given.

What’s your attitude?

A number of posters presented research on the hypothetical willingness of high-risk communities to participate in an HIV vaccine trial. Liliana Martínez Peralta and her colleagues from Argentina, for example, found out that over 50 percent of volunteers in a prevalence study in STD clinics in Argentina are willing to participate in an HIV vaccine trial. Interestingly, the most common reason given for not participating is that people thought they might think and worry too much about HIV, and become “obsessed” with it.

However, Susan Buchbinder of the Department of Health, San Francisco and her colleagues went a step further and analysed the difference between what people said and what people did. From a group of people who participated in an HIV vaccine preparedness study, only 20 percent of those stating hypothetical willingness to participate in a future Phase II vaccine trial actually did. The rest cited reasons such as time commitment, concerns about vaccine safety, and potential social harms. This study points out that recruitment and participant education will need to be more effective. And while studies into willingness to participate in a trial may be a good way of setting up a social research structure and establishing a relationship between particular communities and researchers, if the answers given don’t reflect reality, is it really a useful question to ask?

Meanwhile, a survey of 3,500 Americans by Daniel Montoya and his colleagues from the National Institutes of Health found that many people are unaware of, misinformed or hold misconceptions about HIV vaccine research which prevents them from being more supportive. Twenty percent believe that a vaccine already exists but is being kept a secret – including 48 percent of African-Americans and 13 percent of gay men surveyed.

Still more issues

• The HIV Vaccine Trials Network (HVTN), with input from partners from Africa, the USA and Thailand, has developed a list of 16 indicators of community engagement with which to evaluate their research centres in terms of their success in community mobilisation. “Research organisations must provide resources to make sure that there is community understanding,” said Steven Wakefield, the poster presenter from HVTN. Also on the community front, AVAC’s AIDS Vaccine Info Clearinghouse, a web-based information service, is almost ready to be launched.
• The International AIDS Vaccine Initiative (IAVI) presented a work in progress estimating the total amount spent worldwide on HIV vaccine research and development. They hope this can be used to both give more accurate costings for future HIV vaccines work as well as provide an advocacy tool to find those funds.
• On the ethical front, concerning the question of standard of care (i.e. will trial participants have access to antivirals if they seroconvert), Jim Whitworth from the MRC Program in AIDS in Uganda and the London School of Tropical Medicine and Hygiene (UK) during an overview of African cohorts pointed out that if participants seroconvert, they are not likely to need antivirals for five years or more, yet it will be 10 times more common to find HIV positive people during screenings for trial participation and some will need antivirals immediately. Can vaccine trials be used as a way to provide not only testing and counselling, but access to treatment?

Australian trial

The conference was a good opportunity to share information about the work of the Australian-Thai HIV Vaccine Consortium (ATHVC). As the Australian trial is not associated with either the prominent IAVI or the extensive HIV Vaccines Trials Network (HVTN), the international vaccines community has limited knowledge of it. Presentations were made on the overall program, successful pre-clinical trials, safety issues, work to create immune responses in genital mucosa (targeting these areas may be useful to prevent infections caused through sexual intercourse), and social research studies within the Australian trial. AFAO presented a poster on our model of community involvement where AFAO is a full member of the consortium. This differs from most programs in the world where communities are consulted with through separate Community Advisory Boards (CABs).

The future of HIV vaccine basic research and clinical trials

The Conference closed with an expert panel identifying obstacles that need to be overcome and priorities for moving forward. What were they? Finding immunogens that can produce broadly neutralising antibodies is the biggest obstacle, said Margaret Johnston from the National Institutes of Health (NIH-USA) while Jose Esparza from UNAIDS said that the “holy grail” is to find the correlates of immune protection. Gary Nabel the NIH added that a trial to find correlates of protection may not result in a successful vaccine but it will help research. Wayne Koff from IAVI wants to see cell-mediated immunity based vaccines to go into human trials and Michel Kazatchkine from France’s Agence Nationale de Recherches sur le Sida called for international standardising of assays to help determine what to move into Phase III trials. Jean Pape from the Centre GHESKIO called for regional centres of excellence which would support care, training as well as research. Yiming Shao the Centre for AIDS Prevention and Control in Beijing, China called for a back to basics approach where immunologists teach vaccinologists how to stimulate the immune system.

Most of the panellists touched on the same issues such as the need for coordination which the establishment of the Global Vaccines Enterprise hopes to help provide. The vaccines “pipeline” needs to be evaluated so that the world strategically evaluates vaccine efforts instead of wasting resources, for example, by focusing on a few of the most promising candidates to go into trials rather than have too many small trials. Bigger questions about manufacturing, distribution, and community preparedness also need to be tackled.

Next year, the Vaccines 2004 meeting will be Lausanne, Switzerland. What advances will we see by then?

Andy Quan works for AFAO as an International Policy Officer.

Top