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HIV testing in pregnant women
Over the past decade the case for HIV testing in pregnant women in Australia has become stronger but the fact remains that most Australian women have a very low risk of acquiring HIV, reports DR KATHERINE BROWN.
This low risk is due primarily to the low prevalence of HIV in Australia and the very low incidence of new infections, even in Sydney, the epicentre of HIV in Australia.
In 2001, the annual incidence for the diagnosis of HIV in NSW was 5.3/100,000 with 10 per cent of cases from non-metropolitan areas where the incidence is1.6/100,000, compared with 6.1/100,000 in Sydney. The male to female sex ratio for HIV diagnosis was 7.4:1.1 The increased benefit for testing in all pregnant women comes from evidence that the use of antiretroviral medications during pregnancy, labour and the first six weeks of the neonatal period reduces the risk of vertical transmission to around two per cent.
In the twenty years since diagnosis became possible, 31 HIV positive children have been born in Australia to women who are HIV positive. However, since Highly Active Antiretroviral Therapy became available in 1996, no HIV positive babies have been born. These infections primarily occurred before antiretroviral therapy became available. There are less than one thousand women in Australia known to be living with HIV, with 1,207 women diagnosed HIV positive since 1981. Of these women, 89 had a history of injecting drugs, 242 came from high prevalence countries, 100 had partners from high prevalence countries, 132 had partners who were known to be HIV positive, 110 had received infected blood products and 214 had partners with high-risk behaviour (injecting drug users or bisexual men). These figures show that there were 987 women with recognised risk factors for HIV and these are the women who must be offered HIV tests. 1
The most obvious benefit of testing in pregnant women is to reduce the risk of vertical transmission. If a pregnant woman tests and discovers she is HIV positive, treatment can be commenced to minimise the risk of transmission from mother to child. The risks and benefits of treatment can be discussed with the woman and her partner so that they can make an informed decision about their management of the pregnancy.
HIV positive communities and their advocates have generally taken the view that that policies relating to the testing of women, or the treatment of HIV positive women, must rest on the principles of shared decision making between women and their doctors. The HIV community sector has never supported mandatory testing of pregnant women, or of any other group of people. Mandatory testing may have the unintended effect of unnecessarily subjecting people not at risk to the stress and trauma of HIV testing, whilst those most at risk may be fearful of retribution, and so avoid contact with the health care system altogether. This position is also based on the view that risk is a matter of individual behaviours, not population groups per se. The community has always stressed the importance that decisions about HIV testing be based on assessment and discussion of any risk, with appropriate pre and post-test counselling.[i]
The risk of vertical transmission depends on a number of factors including viral load and immune function (CD4 count). A high viral load and a low CD4 count are known to increase the risk, which is why treatment during pregnancy and labour is now recommended. Doctors and midwives can also avoid certain procedures which may increase the risk of transmission during birth, in HIV positive pregnant women.
The 1994 publication of the results of ACTG 076 provided the first indication that antiretroviral treatment for the mother would also benefit the baby by reducing the risk of vertical transmission from 25 per cent to 4 per cent. Further studies published in 1999 demonstrated additional benefits to be gained from the use of combination therapy during pregnancy, therapy in the intrapartum and immediate postpartum period, caesarean section and the avoidance of breastfeeding. 3,4 The Royal Australian and New Zealand College of Obstetricians and Gynaecologists and some leading microbiologists now suggest that all pregnant women should be tested for HIV on the basis that testing is relatively cheap and treatment is beneficial for both mother and child. 5,6
In the past many women decided to terminate their pregnancies, sometimes on the advice of their doctors, when they found out they were HIV positive. The main reasons were the fear of transmitting the virus to the baby and the prospect of being too ill to look after a baby. However current available treatment options have changed this thinking for many women.
Targeted testing (screening only women who identify specific risk factors) is not recommended in many western countries where there is high seroprevalence because of the risk of missing both women who do not acknowledge having taken any risks, and women who are unaware of the risks that their partners have taken.1,8 The prevalence of HIV in women in many of these countries is much higher than it is in Australia. The prevalence of HIV in all females (including children) in Australia is 1.5/10,000. The prevalence of AIDS is 1.8/1,000,000.1 In the United States 1.5/1000 women giving birth are HIV positive. It has been estimated that testing all women is not cost effective until the prevalence reaches 4.6/1000.7
In Australia in 2001, there were 246,000 births and testing every pregnant woman in Australia for HIV would cost more than $2,460,000 per year for the tests in addition to the cost of the pre and post-test counselling recommended for all people receiving an HIV test. Before Australia could even contemplate the idea of testing all pregnant women for HIV, health services must be in place to ensure an a system of appropriate referral for women who test positive.
HIV positive communities and their advocates have generally taken the view that that policies relating to the testing of women, or the treatment of HIV positive women, must rest on the principles of shared decision making between women and their doctors. The HIV community sector has never supported mandatory testing of pregnant women, or of any other group of people. Mandatory testing may have the unintended effect of unneccessarily subjecting people not at risk to the stress and trauma of HIV testing, whilst those most at risk may be fearful of retribution, and so avoid contact with the health care system altogether. This position is also based on the view that risk is a matter of individual behaviours, not population groups per se. The community has always stressed the importance that decisions about HIV testing be based on assessment and discussion of any risk, with appropriate pre and post-test counselling.*
In low prevalence situations, there is a the risk of a false positive test, which means that a test result will come back as positive, even though the person is in fact negative. This is an important issue to consider as there have been instances where women were advised that they were infected with HIV on the basis of a false positive test because the health worker giving the result was not aware of the need for confirmation with Western Blot and follow up testing. Follow up tests two weeks later can confirm a person’s negative status, however false positive results generate a high level of anxiety for these women, their partners and families and have been associated with a risk of suicide or unnecessary termination of pregnancy. 7The issue of privacy is an important argument to consider in any debate on HIV testing for pregnant women. Women routinely have a number of blood tests during a pregnancy and Medicare covers some of the cost of these tests. HIV testing is not covered by Medicare although there is no cost to the patient. The blood taken will not necessarily tested by the laboratory where the blood is collected. Unless the laboratory is a public laboratory, the blood sample will be forwarded to an approved HIV testing laboratory This lack of privacy may stop pregnant women from seeking an HIV test. Privacy may also be breached as many centres that send blood samples away for testing do not code tests to protect a person’s identity. People have a right to ask for their test to be coded, but many people are unaware of this right.7
The risk of HIV transmission following unprotected vaginal intercourse for women is relatively low (less than one chance in 1,000), compared to other sexually transmitted infections such as Chlamydia where the risk is one in five. The estimated chance of a person known to inject drugs being HIV positive is two per 100. The risk of contracting HIV from a single act of intercourse with an injecting drug user of unknown HIV status is 1/1000 x 2/100 = 1/50,000. 9
Most women in Australia have a low risk of acquiring HIV. Most have access to antenatal care. What they and all their health care providers need now is access to accurate, timely information about the risks and benefits of universal testing for HIV, the risks and benefits of current antiretroviral medications and birth practices and the confidence to know that their privacy will be respected and their decisions supported. To test or not to test? That is still the question. References1 National Centre in HIV Epidemiology and Clinical Research Australian HIV Surveillance Report Vol 18 No 4 October 2002 2 Connor SE, Sperling R, Gelber R et al Reduction of Maternal-Infant Transmission of Human Immunodeficiency Virus Type 1 With zidovudine Treatment. New England Journal of Medicine. 1994; 331: 1173-1180 3 Saba J. The results of the PETRA intervention trial to prevent perinatal transmission in sub-Saharan Africa. From - Sixth Conference on Retroviruses and Opportunistic Infections, February 1999, Chicago, Illinois. Abstract S6 4 Shaffer N, Chuachoowong R, Mock PA et al. Short-course zidovudine for perinatal transmission in Bangkok, Thailand. Lancet. 1999; 353: 773-780 5 Gilbert GL Infections in pregnant women. The Medical Journal of Australia. 2002; 176: 229-236 6 Ziegler JB Antenatal screening for pregnant women in Australia: time to revise policies? The Medical Journal of Australia 1999; 171: 201-3 7 Oldenettel D, DyeTD and Artal R Prenatal HIV Screening in Pregnant Women: a medico-legal review. 1997; 24: 165-172 8 Mauskopf JA, Paul JE, Wichman DS, White AD and Tilson HH. Economic impact of treatment of HIV positive pregnant women and their newborns with zidovudine: implications for HIV screening The Journal of the American Medical Association 1996; 276: 132-138 9 Australasian Society for HIV Medicine Inc. Position Paper on Post Exposure Prophylaxis (PEP) in individuals exposed to HIV via sexual exposure or injecting drug use (IDU). 1998 Dr Katherine Brown is Director of the Illawarra Sexual Health Service and the Women's Health Coordinator.
Public sex
There are different ways of gathering data on contemporary sexualities, and people’s beliefs about sexual activities, reports KATH ALBURY.
You can undertake quantitative research, counting the numbers of people who answer particular questions in particular ways. You can ask open-ended questions, and draw out themes in qualitative data. You can observe sexual behaviour in particular places, such as sex-on-premises venues. Or, you can take the Alfred Kinsey approach and actually recruit volunteers to have sex on camera in your lab. (Of course, this has funding implications).
All of the methods I’ve listed are terrific ways to learn about sexual beliefs and sexual practices. However, my speciality is the study of ‘sex in public’ - the ways that sexuality is represented in the media, and popular culture.
I choose to study popular media texts like Mars and Venus in the Bedroom, Sex and the City, Cleo, and American Pie, as forms of contemporary sexual storytelling. These are the ways we teach, learn, show off, stave off boredom, scare ourselves, or get turned on. I view the production and consumption of sex-related media as a form of sexual expression, not a poor second best to the ‘real thing’. To me, media forms from pop songs to porn are ‘hard data’, from which I can learn about contemporary sexual attitudes and practices.
In both my book Yes Means Yes: getting explicit about heterosex (Allen and Unwin, 2002) and my current research for the ‘Understanding Pornography in Australia’ project, I look at the kinds of sexual practices that have traditionally been considered ‘unheterosexual’, if not downright queer - fetish sex, non-monogamous relationships, anal eroticism, and DIY porn to name a few. Although themes of sexual health and sexual pleasure underpin all of my work, I rarely discuss HIV/AIDS overtly in my writing. This may seem odd in the context of old-school health promotion-style approaches to media, which see tend to see pop culture representations of sexual attitudes as sources of ‘myths’, ‘stereotypes’, or, in the best case scenario, as ‘positive role models’. However, I’ve found the ‘media and cultural studies’ approach to the study of sexuality has helped me think about some thorny issues in what I hope is an ethical, caring and humorous way.
A lot of my thinking about sex and sexuality has grown out of formal study - most notably with my Honours supervisor Michael Hurley, at the University of Technology, Sydney. (Michael is currently based at the Australian Research Centre for Sex, Health and Society). However, my academic research interests were formed by some very specific personal circumstances.
The first was entirely outside of my control. My mother, Rebecca Albury, is a feminist sociologist, specialising in the politics of reproductive health. I grew up in the era of hands-on women’s health advocacy, in an atmosphere of endless collective meetings, persistent lobbying, and politicising the personal on all fronts. As many readers of HIV Australia will know, the Australian community response to HIV/AIDS was very much influenced by the women’s liberation and gay liberation activist strategies of the 1970s. In fact, many of my mother’s friends and colleagues from the women’s health days are now in senior positions in HIV/AIDS research and support organisations.
The second ‘formative’ circumstance is slightly less coincidental. In 1985 I joined a pilot ‘Youth/Health Peer Education Theatre Project’, based at the Adolescent Medical Unit of the Camperdown Children’s Hospital. It was there, as a very ditzy 18 year old, that I met Tobin Saunders, now better known to many as his alter ego Vanessa Wagner.
Tobin is a terrific, honest, loving friend, and we share not only a similar gutter sense of humour, but also a very similar taste in men. Together, in 1996, we came up with the character who became known as ‘Nurse Nancy: University Trained Pervert’. Tobin had been working on the Sydney Men and Sexual Health Project, and we were both highly entertained by the prurient comedy potential in ‘sex-research’. Strapped into my foxy nurse’s uniform, I was ready to probe partygoers at Vanessa’s events, encouraging them to open up, and tell all…in the name of science.
When Vanessa became the preferred drag hostess at community HIV/AIDS education forums, my saucy interviewing skills converted easily into ‘ice-breaker’ questions, designed to relax and prime our workshop participants. In the past few years we’ve perfected this double-act in the ‘Chin Wag’ treatments forums, developed for the National Association of People with HIV/AIDS, and the AIDS Treatment Project of Australia.
In one sense, my work with Tobin could be seen as a sideline to my ‘serious’ job as a writer and researcher. However, I see my more mainstream work on heterosexuality as completely interwoven with my experiences in the world of HIV/AIDS info-edu-tainment. For example, my academic research on discussions of heterosexual anal sex in Cleo Magazine was provoked by what I saw as the remarkable shift in attitudes towards sexual pleasure in the 1990s.1
Until this time, advice columns and how-to articles had generally represented ‘queerer’ activities like anal sex and fisting as fundamentally unacceptable and unpleasant for heterosexual women. Consequently, detailed advice on safety, foreplay and technique was hard to find in mainstream media. In the mid 1990s, however, there was a huge opening up in discussions of alternative sexual practises. I see this attitudinal change not only as a reaction to the HIV/AIDS epidemic, but as a direct sign of the influence of the Australian HIV community’s pro-pleasure, harm-minimisation approach to sexual health education. In my current research project, I’m interviewing Australian underground, cottage industry and amateur producers of pornography, and other forms of explicit media. 2 Again, my emphasis is not explicitly on HIV, but sexual health issues are clearly an essential part of debates around the production and consumption of sexually-oriented media. Given that the mainstream media are quite interested in sex (after all who, isn’t?), I’ve had no shortage of invitations to offer ‘expert commentary’ on the subject. It’s always a challenge, and a pleasure to try to open up conventional ‘pro’ and ‘anti’ censorship debates into broader conversations about sexual ethics, and sexual difference.3
In doing this, I feel I’m working as a sexual health educator. Not in the sense of ‘debunking myths’ or offering ‘positive role models’, but simply opening up some possibilities for people to think about sex in a less black and white way. Notes:
Kath Albury is an honorary research associate in Media and Communications at the University of Sydney, and a chief investigator on the ‘Understanding Pornography in Australia’ project. She is the author of ‘Yes Means Yes getting explicit about heterosex’ (Allen & Unwin, 2002). Kath is also known as drag legend Vanessa Wagner’s favourite sexpert, Nurse Nancy.
“STRIP” for me, big boy! KEVIN SCHAMBURG, PHILLIP HABEL, RUTH PRIMROSE AND ELISSA O’KEEFE report on STRIP, a comprehensive, collaborative model of sexual health care.
In response to low levels of HIV testing identified in the Canberra Gay Community Periodic Survey 20001, three local agencies collaborated to develop a screening program for men who have sex with men (MSM). The resulting program, Sexual Health Testing Referral and Information Project (STRIP) is a successful service model for increasing access to sexual health information and testing for any group identified as being at high risk of sexually transmitted infections (STI) and/or blood borne viruses (BBV). This model could be easily replicated by similar agencies elsewhere.
The Canberra Gay Community Periodic Survey was conducted in 2000 by the AIDS Action Council of the ACT and the National Centre for HIV Social Research. The survey indicated that of the 347 men who answered the questions relating to testing and screening, 17 per cent had either not been tested for HIV or had not obtained their results. Furthermore, 43 per cent of those tested had not been tested in over 12 months.
Representatives from the Community Education and Health Promotion Unit of the AIDS Action Council of the ACT (CEHPU AAC), and nurses from the Canberra Sexual Health Centre (CSHC) and the ACT Division of General Practice (ACT DGP) HIV/AIDS Program, held a series of meetings to develop an outreach screening program for MSM. The project included:
Effective communication contributed to the success of STRIP and involved regular meetings, e-mail and phone communication. It is unlikely that STRIP could have been implemented by any of the agencies individually, with each agency contributing complementary skills, resources and networks.
The outreach sexual health testing and results clinics were held at a sex-on-premises venue (SOPV) and also at the AAC premises (Westlund House) for two periods of four weeks in June/July and September 2002, with one staff member from each participating agency in attendance. The program offered information about and encouraged testing for STI and BBV, to MSM and other individuals who presented.
The Manager CEHPU AAC obtained cooperation and support for the program from the management of one of Canberra’s most popular SOPV, who provided access and the space for the STRIP clinics free of charge. This venue has nearby free parking and is located in an area zoned for light industrial purposes including adult product retail outlets, brothels and SOPV.
The SOPV clinics were run from 6pm to 8pm on Thursday evenings because the venue is usually reasonably busy at this time, but not so busy that the STRIP clinic would impinge on its normal functioning. There was also some flexibility around these times so that the clinics could continue longer if there was the demand. One limitation of the timing was that there was no public transport service to the area after 6pm.
The SOPV management was fully agreeable to having a female nurse present in what would usually be an all-male environment. In consideration of patrons’ privacy she had a low profile in the cruising areas. Identifying caps and badges were used to distinguish male project staff from patrons. An open lounge area was used for discreet discussion of the project with potential participants. Westlund House is close to both the city centre and a central bus interchange. Free parking is available and the surrounding area is quiet and private. This venue was chosen so that a broader range of people could access sexual health screening. It was recognised that some men may not want to access the SOPV clinic for personal and confidentiality reasons. Appointment times were offered on Saturdays 10am - 1pm, but were flexible and could extend later. In the lounge area, beverages and the daily newspapers were available. This gave an informal setting in which participants discussed the project with staff. There were two clinic rooms, allowing two nurses to see participants at the same time.
An information brochure was developed by the STRIP team and published by the CEHPU AAC. It gave information on the testing procedures, the reasons for testing and the times and venues for clinics. Printing the brochure in a plain format on A4 paper helped to keep the costs down. This information was also available on the AAC website.
Advertisements for both clinics were placed in the Canberra Times Classified Adult Section on Wednesdays and Saturdays. Notices were posted to over 800 members of a local e-mail list for the Gay Lesbian Bi-sexual Transgender and Intersex communities. Information was also included in the AAC and People Living with HIV/AIDS (PLWHA) ACT newsletters. The SOPV management and staff promoted STRIP to patrons during the week preceding the clinics. Four different A4 and A3 posters were produced for the venues with messages related to sexual health testing. It became apparent that posters with white printing on a black background were easier to read in the SOPV due to the low levels of lighting and the use of UV lighting. New posters were produced to suit this environment.
An adapted tradesperson’s trolley was used to transport the clinical equipment. A medical officer from CSHC provided telephone support to nursing staff if required for management of people with symptoms. Autonomous nursing management of symptomatic participants would have been possible if a nurse practitioner was involved in the clinic5. This will not be possible until the nurse practitioner role is implemented in the ACT.
Participants could choose to have their consultation with a male or female nurse and appeared to have no preference. No timeframes were set but most consultations ranged from 30 to 60 minutes. The available tests were urine testing, throat and anal swabs for chlamydia and gonorrhoea, and serology (blood tests) for HIV, Hepatitis B, Hepatitis C and syphilis. Participants had access to toilet facilities at both venues for urine specimen collection.
Pathology specimens were stored in an insulated container, then transported to the pathology service at the completion of each clinic. All clinical expenses including tests and treatment were provided free of charge to participants, funded by CSHC. CSHC stored the medical records in line with their current practices, which take into account the high levels of confidentiality required by the sensitivity of the information. Participants were advised that their results would be available within a week and were encouraged to return for their results in person.
Reviewing the achievements 1. Strengthened interagency relationships. STRIP was the first clinical outreach service provided in a SOPV in Canberra. It was well accepted by the staff and the patrons of the SOPV, and strengthened the working relationships between SOPV, and the agencies involved. 2. Advertising strategies. When participants were asked how they knew about the project, their answers indicated that equal numbers had attended the clinics in response to the venue posters, printed advertisements and e-mail postings. 3. Acceptance of female nursing staff. There was no negative feedback received at the SOPV by management or staff about the presence of a female. 4. Increased sexual health screening for a group of people at high risk for an STI. During STRIP 32 people had clinical consultations, of these 10 (31per cent) had never been screened, and 17 (53 per cent) had not been tested for more than 12 months. There were 8 (25 per cent) participants who had no immunity to Hepatitis A, 17 (53 per cent) who had no immunity to Hepatitis B and 5 (16 per cent) had screen detected bacterial STI all of which were treated at the STRIP clinic. 5. Collection of results. Of the31 participants screened, 30 (97 per cent) received their results within a consultation which permitted post-test counselling, health education, referral and treatment as appropriate. One participant did not re-attend for his results. 6. Increased community awareness of sexual health testing. AAC staff recorded an increase in the number of requests for information and referral for sexual health testing folowing the completiuon of the project. There was also a request from a local tertiary institution for an outreach screening program to be run on its campus. 7. Extension of the project. The positive responses from participants and the clinical outcomes have demonstrated the benefits of a sexual health outreach service to MSM. AS a result the three agencies involved in STRIP have agreed to continue the program in 2003. Transferability of this model is possible. It has applications in a variety of outreach settings including but not limited to brothels, corrective services, youth centres and alcohol and drug services. In 2003 STRIP will expand into the tertiary education sector. References 1. Aspin, C, Van de Ven, P, Prestage, G, Kippax, S, Schamburg, K. Coase, D. 2001 Gay Community Periodic Survey Canberra 2000, National Centre in HIV Social Research, Sydney. 2. http://www.sesahs.nsw.gov.au/publichealth/InfectiousDiseases/pdf-diseases/guidelines.pdf 3. Debattista, J., Dwyer, J., Orth, D., Patten, J. & Delandelles, J. Community Screening for Neisseria gonorrhoeae and Chlamydia trachomatis among patrons of sex-on–premises venues. Venereology 1999;12,1:27-30. 4. Woods, W.J., Sabatino, J., Bauer, P.L., Adler, B., Dilley, J.W. & Binson, D. HIV Testing in gay sex clubs. International Journal of STD & AIDS, 2000; 11:173-175. 5. ACT Nurse Practitioner Steering Committee. The ACT Nurse Practitioner Project: The final report of the ACT Nurse Practitioner Steering Committee. 2002: 62-81. Kevin Schamburg is the Manager of the Community Education and Health Promotion Unit of the AIDS Action Council of the ACT. Philip habel is a Registered Nurse, ACT Division of General Practice HIV/AIDS Progra,. Ruth Primrose is a Clinical Nurse Consultant, Canberra Sexual Health Centre. Elissa O'Keefe is an Outreach Sexual Health Nurse, Canberra Sexual Health Centre.
Frontlines and fault lines
ANDY QUAN reports on participating in the International Treatment Preparedness Summit held in Cape Town, South Africa in mid-March.
Over a few days in early March, dozens of flights touched down in Cape Town unloading AIDS activists from around the world. Nearly 125 participants from 67 countries came to attend the International Treatment Preparedness Summit, an event “organised by an ad-hoc coalition of treatment activists from around the globe” and sponsored by over a dozen donor organisations. Representatives from these donor organisations, volunteers and local organisers joined these activists. Their main aim was to establish organisations and movements for increasing treatment access where none exist, and to strengthen those that already exist.
The key method for achieving this was by addressing the issue of treatment education – how individuals and institutions can understand HIV and AIDS treatments better. This will hopefully lead to treatment advocacy – how we can better fight for and obtain access to treatments for HIV and AIDS which in addition to antivirals includes prophylaxis for opportunistic infections (OIs), substitution therapy for drug users, monitoring and diagnostic tools, and the basic health infrastructure to deliver them.
Why we went The reason has been well described in recent years as the treatment access movement has grown in prominence and strength. But as this meeting took place in South Africa, it is appropriate to quote Justice Edwin Cameron who, in a landmark speech at the 2000 Durban World AIDS Conference said:
Since then, there have been many positive developments in and opportunities for treatment access, including the development of generic antivirals in countries such as India and Thailand, the Doha Declaration of 2001 affirming a nation’s right to health over economic interests and the stirring example of Brazil’s universal provision of treatment to people living with HIV/AIDS (PLWHA). Many successful pilot projects around the world have also commenced, bringing treatment to PLWHA and saving lives. At the same time, the fault-line between rich and poor countries remains. AIDS continues to infect and affect people around the world at an increasing rate, but treatment for PLWHA has not successfully been scaled-up to reach significant numbers. How can the world reach the World Health Organisation’s target of treatment of three million people with antivirals by 2005?
It is with this sense of urgency that organising for this summit began in late 2002. The logistics of the meeting including agenda-setting and participant-selection took place primarily by e-mail. Simultaneously, the writing of regional reports and the gathering of documentation and materials on treatment access commenced. As the meeting date approached, the situation became tense. Would funding come through? Could flights be organised and translators found? The key efforts of New York-based Gregg Gonsalvez, local organiser Onos Imhanwa and others from around the world, saw the pieces of the puzzle come together. The summit took place.
Day by day On day one, Zackie Achmat of South Africa’s Treatment Action Campaign (TAC) began by drawing up a framework for creating a global movement. Others followed with presentations on treatment literacy and advocacy, and on specific issues such as treatment guidelines, funding, health infrastructure, mother to child transmission (MTCT) prevention needs, and a standard of care for OI prophylaxis and treatment. The afternoon featured reports from various regions and countries, divided into Eastern and Central Europe, Africa, Asia and Latin America and the Caribbean.
The following day, participants broke into discussion groups to identify needs, obstacles and models for treatment literacy and treatment advocacy. After a report-back from the groups, participants divided into regions and discussed the same issues. The day closed with a report from the Medecins Sans Frontieres (MSF) project in Khayelitsha, not far from Cape Town, which provides care for more than 3,000 people with 300 clients receiving antiviral therapy with generic drugs.
Day three split participants into discussion groups on the specific topics of funding, communications and materials dissemination, drug pricing, patents and access, stigma and vulnerable populations, global advocacy efforts and linkage with health care providers, drug treatment providers, non government organisations (NGOs), and other groups who provide care and education. In the afternoon, regional participants regrouped to discuss priorities and next steps for treatment education and advocacy. The first question and answer period on the Global Fund to Fight AIDS, TB and Malaria (GFATM) followed a report back.
On the last day, participants representing developing countries heard presentations from representatives of funding organisations. A successful press conference received local coverage, primarily focusing on the summit’s support for TAC’s upcoming civil disobedience campaign to pressure the government to commit to a public sector antiviral program and to sign a Framework Agreement with business, labour and community on a National HIV/AIDS Prevention and Treatment Plan.
The afternoon saw a heated meeting with representatives of the Global Fund and a final session tried, unsuccessfully, to reach consensus on a Declaration of Action from the Summit (a discussion will continue by e-mail). A strong meetingThe real success of summits is often found in outcomes that happen afterwards, or take place in ways that are undocumented. One of the possibilities of the success of this summit is in the way it created a momentum and drive in an international movement for treatment access. This happened by the process of involving and bringing together key activists from around the world, many who are working at the frontlines.
It also allowed many people – both globally and regionally - to meet for the first time to discuss and plan. Simultaneous translation in French, Spanish and Russian during the summit allowed participants to take part in an authentic way, and allowed perspectives to be heard by other participants which would not take place in a gathering limited by language.
The summit was also an important opportunity for funders to speak directly to PLWHA and NGO/community-based organisation (CBO) representatives. Representatives came from the World Bank, the World Health Organisation, the Tides Foundation, UNAIDS, the Catholic Medical Mission Board, USAID and the Gatsby Charitable Foundation. Often those who fund meetings are not present at them, but most of these funders observed the entire meeting, hearing directly from those involved in treatment access issues.
There was additional useful interaction between sectors. The majority of participants came from PLWHA groups and NGOs/CBOs. But there were also a number of health-care professionals, some wearing an “activist hat” as well. The decision had been made to generally exclude representatives from governments and international agencies. This seemed to work as it allowed the summit to remain small in size and activist in nature. But this is a question that could be revisited for regional and other follow-up meetings since involving key decision-makers in discussions, such as was done with the funders at this summit, can be constructive. Communications and the dissemination of information may be improved as a result of the summit. The listserv discussions will likely continue and regional listservs may be developed. A report will be compiled and disseminated. The many regional and country reports should also be distributed and may be a useful resource for global advocacy. Work is being driven forward on how to best document and disseminate treatment resources from around the world.
Finally, one can never underestimate the power of bringing people together in informal discussions at coffee breaks, meals and social gatherings that can lead to the exchange of an important idea, the start of a key partnership, or the beginning of a concrete action plan.
There are currently follow-up regional meetings planned for most regions. An Eastern and Central European meeting in Belarus is planned as is a Latin American and Caribbean meeting. The African participants met the day after the summit, hopefully to develop their African Treatment Action Movement. The differences in Asia’s local situation and languages makes follow-up meetings more difficult, but there will be possibilities for treatment advocacy at various Asian meetings. The success of regional meetings to carry forward an agenda could be the most important marker of the summit’s success. Other key themesHost organisation, TAC, provided inspiration for many. Participants spoke with Zackie Achmat and other TAC members. TAC’s model of feisty, inspired, and practical organising certainly has elements that can be replicated in other locations. TAC asked for global support in April for their civil disobedience campaign against their government’s inaction in dealing with HIV and AIDS. On listening to the needs of activists at the summit, I heard that people and organisations need basic capacity-building and training. In order to build any treatment access movement, we need to work to strengthen our individual parts: find ways for community-based organisations and groups to keep operating, to keep their activists alive, to make the principle of Greater Involvement of People Living with HIV and AIDS (GIPA) a reality, to build advocacy-skills and more.
I continue to be amazed at the energy and passion felt by community activists about the Global Fund. It is clear that the community feels ownership of the Fund and wants to ensure that it meets the needs of those who it was set up to serve. Key discussions included how to ensure strong community participation in County Coordinating Mechanisms and how to write proposals that include strong treatment components. At the same time, I hope that activists around the world view the Fund as part of a solution, rather than the whole solution. Some national governments can afford to put more resources into responding to AIDS and the Global Fund should not be an excuse for them not to do so. Debt relief could be another way for funds to be freed up for treatment access.
The organisers managed to successfully move away from a gathering dominated by presentations to one that included ample discussion time for participants. However, I’d like to recommend that we go one step further and aim to turn discussion into action, to not just share our local situation, but to plan concrete collaboration and actions.
All in all, though, the summit was a great success, more so for how quickly it was put together. An incredible group of volunteers worked hard to bring the event to fruition, and the momentum continued after the conference, follow up actions were planned and emails rapidly flew work continued and e-mails were sent around the globe.
Our friends, colleagues, and brothers and sisters from around the world are dying senselessly, but we are doing something about it. We are working with urgency and commitment and the summit was a best-case example of this.
(footnote) Andy Quan is the International Policy Officer at the Australian Federation of AIDS Organisations and also represented the Asia-Pacific Council of AIDS Service Organisations (APCASO) at the summit. Reproduction and distribution of this article is welcome, however all opinions expressed are the author’s personal opinions.
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