Bridging the Gap: Conference Record [Abstract book, International Conference on AIDS (12th: 1998: Geneva, Switzerland)]

740 Abstracts 34279-34283

12th World AIDS Conference

ability to cope with challenges and manage crises presented by HIV disease
progression. Families closely associated with PLWH/A have actively participated
to sustain the Income Generating Activities.
S342791 Treatment advocacy for people with HIV/AIDS: A Hong
Kong perspective
Rodney Jones1, J. Thomas2, L. Wong2, L. Sinclair2, B. White2, E. Cheuk2,
B. Summers2. 'Department of English City, University of Hong Kong, Tat Chee
Ave, Kowloon Tong; 2AIDS Advocacy Alliance, Hong Kong (China)
Issue: Despite being a resource rich, technologically advanced city, Hong Kong
has yet to offer its citizens living with HIV wide access to optimal anti-retroviral
treatments. Fewer than half of the active patient load of the Department of Health
and the Hospital Authority are receiving drug combinations containing protease
inhibitors.
Project: The AIDS Advocacy Alliance began as a group of people with HIV or
AIDS, their friends and family members and volunteers from other AIDS service
organizations who came together in concern about access to optimal treatments.
After seeking support and representation from local AIDS related NGOs, the
group devised a strategy to both bring our concerns to the relevant authorities
and to educate people living with HIV about the situation and their treatment
options. Specific steps included an extensive review of current medical research,
information sharing with local PHAs and health care workers, consultation with
experts and other Asian activists groups, and the drawing up of a list of principles
regarding access to care in the Hong Kong context. Consultation on these principles was undertaken with representatives from the Hong Kong Advisory Council
on AIDS. In addition, further efforts were taken to reach out to the HIV community
including outreach through health care workers, counselors and AIDS Service
NGOs, and the publication of a treatment newsletter with Chinese translations of
the most current treatment news from abroad.
Results: These efforts have resulted in placing the issue of treatment more
firmly onto the agenda of AIDS policy makers and practitioners, and in opening
debate on such issues as patient's rights, the patient-physician relationship and
the role treatment issues have in the SAR's overall AIDS strategy. The limitations
that were encountered included constraints on access to information, cultural issues regarding both the stigma of AIDS and the roles patients and physicians are
meant to perform, and the necessity to define the direction and tone of advocacy
within the particular cultural and political context of Hong Kong.
Lessons Learned: Hong Kong's unique political and social culture present
both possibilities and limitations for efforts to empower people living with AIDS.
Advocacy must be flexibly defined and efforts must be made to bring patients,
physicians and policy makers equally into the debate.
34280 Sharing experience from a network for women living with
HIV/AIDS in India
Sheeba S. Sagayanathan. 133 Ist Squared Road Austin Town Bangalore
560047, India
ISSUE: Due to stigma and pressures from families still WLWH/A in India are
still in darkness. With no moral and social support to live positive life, free from
ignorance and prejudice.
PROJECT: INP+ was established by PLWH/A in India in February 1997 to
promote a positive image and give visibility to PLWH/A across the country and
help them to improve their overall quality of life. Conduct meetings, workshops
and conferences across the country. Providing information about support group
to the NGO working in the field of HIV/AIDS.
Encouraging the PLWH/As to form self-help groups in their own areas. To
facilitate the media to provide positive visibility for PLWH/As. Advocate for strong
legislative measures to protect the individual's right to remain confidential.
Result: 10 WLWH/A identified and have joined the INP+ and attended the
workshop for positive life.
20 WLWH/A who wrote letters accessed information by post.
Number of NGOs come forward to support the programme.
Lessons Learned: 1) More NGOs should come forward to suport and form
self help groups in their area since it is difficult for individual WLWH/A to form due
to stigma. 2) Govt. should come forward with financial support. 3) Providing an
opportunity at international levels to boost the cause of WLWH/A.
34281 National seminars of PWAs in Germany
Carsten Schatz1, M. Hinz1, W. Vorhagen2, B. Seifert3, T. Fenkl4, F. Galle1,
R. Kriegel5. 2Positiv e. V., Wichertstrasse 36 10439 Berlin; 2Positiv e. V Bremke;
3Positiv e. V Kassel; 5Positiv E. V Bremen; 5Deutsche AIDS Hilfe e. V. Berlin,
Germany
Issue: In order to work effectively in local, regional and national ASOs and self-help groups PWAs need to develop certain abilities and skills. A knowledge of
the history and the traditions of the AIDS movement is indispensable for anyone

who wants to get involved in and contibute to this work.
Project: The national PWA seminars organized by Positiv e.V. since 1986
have been adapted to this need for information and personal training. So far
the seminars have consisted of a topical part (e.g. medical issues, issues of
social welfare, sexuality, etc.) and a part dedicated to sharing experiences and
relaxation. This concept has been modified to include two series of workshops
that run through all the seminars:

(1) The "HIV-Academy", a classic skills-building workshop addresses group
dynamics and communication skills, legal aspects of association building, setting
up and using e-mail and other multi-media functions, accounting, counselling, etc.
(2) "What happened and what's next?" These workshops describe and discuss
the impact of the AIDS-movement on society and the development of the AIDSmovement issue by issue (impact of AIDS on the gay community, on public health
policy, etc.)
Through constant evaluation, participants are given the option to include new
topics as they arise and to determine the depth each topic is treated with. By
documenting all seminars, we have contributed to the history of the self-help
movement for more than ten years.
Results: The new concept was welcomed and has been accepted by all participants. The demand for our seminars has increased. The number of seminars
per year has by now risen to six, frequented by some 400 PWAs who share skills
and experience with their local and regional groups.
Lessons Learned: PWAs need specific programs to be able to influence on
ASOs and the development of local prevention programs as well as work in
self-help groups. Self-help is constantly in a process of renewal and thus requires
a flexible working structure.
34282 Peer education and empowerment is achievable via
consultation exercises
Julian Vincent Hows, B. Forbes. UK Coalition of People Living with HIV 250
Kennington Lane, London, UK
Issues: UK residents with HIV are often consulted on changes to services in a
"tokenistic" way, without the tools or information to make a useful contribution.
Many consultation exercises are too late to effect real change, use alien language
and jargon, and do not define what change might result.
Project: The UK Coalition of people living with HIV and AIDS in partnership
with a London wide funding consortia, conducted a survey in late 1997. The aims
were to inform people about intended reconfiguration of services, and engage
in dialogue about how people could effectively contribute to the debate. 15.000
copies of a paper outlining proposals were circulated via a community magazine
and mailings to service users across London. People took part in a telephone
survey, which was also applied at drop-in centres. The paper was also used at
three consultation exercises as a starting point for similar debate.
The survey covered demographics, pattern of services, perception of the value
of specific services, involvement in the governance of organisations, sought
opinion on statements concerning cost effectiveness of certain types of service
provision. Areas covered included peer support, hospice and respite care, legal services "drop-ins" and support groups, counselling, pastoral care, free or
reduced price meal provision.
Results: Over 100 people were surveyed by phone, 120 more people took part
in local consultations. Reaction to the exercise was positive despite respondents
suspicion of the motives of service commissioners. The exercise played a major
part in influencing purchasers' decisions for 1998/9.
Lessons Learned: That the commissioning process can be de-mystified to
allow effective consultation and input from people living with HIV. That consultation needs to be ongoing to be effective, and needs resources to ensure that the
language of commissioning is simplified. That Peer educators can involve people
in the process of consultation who otherwise would not take part as brokers of
change rather than confrontation.
S34283 Self-help groups of people with AIDS in Cote d'lvoire:
People with AIDS as social reformers in Western Africa?
Christophe Cornu. EHESS/ARNS 15 Rue de Naples 75008 Paris, France
Objectives: In Western societies AIDS organizations made up of people infected
and affected by HIV / AIDS have been playing a very important role in the response to the epidemic. In Cote d'lvoire, the country with the highest prevalence
in Western Africa, two self-help groups (SHGs) of People with AIDS (PWAs)
were created for the first time in 1994. Main objectives of the research are (1) to
describe how these SHGs emerged in the context of a developing country with
a very weak civil society and (2) to examine what social role they intend to play
and the difficulties they have to overcome.
Methods: Semi directive interviews were conducted with a sample of volunteers
of the two SHGs (n = 35). Qualitative interviews were also conducted with a range
of people involved in the response to AIDS: health care professionals, national
and international policy makers, members of Non Governmental Organizations.
Results: Motivations to belong to a SHG of PWAs: search for psychological, social and material support (different representations of "self-help"). Social role they
intend to play: (1) provision of services to other PWAs; (2) intermediary between
PWAs and relatives. (3) prevention and mobilisation among non-infected and nonaffected people; (4) division of labour with health care professionals; (5) lobbying
and advocacy (interactions with local authorities, international organizations and
donors).
Conclusion: SHGs of PWAs in Cote d'lvoire are a collective response to an

individual crisis, providing psychosocial support to people who very often are
or feel socially rejected. But they have to cope with a series of problems (1)
cultural and organizational (no non governmental tradition); (2) economic (they
are poor and SHGs are regarded as a source of income; (3) political (who makes
policies?). Could SHGs of PWAs be also a collective response to a social crisis?