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

12th World AIDS Conference

Abstracts 34284-34289 741

34284 Developing community mobilisation strategy and
creating self sustaining funding for HIV service
programmes in developing communities
Gary Jim Lamont. PO Box 16082 Vlaebere, Cape Town, South Africa
In many developing and under resourced nations HIV services are curtailed by
lack of central government funding and lack of capacity in NGO sector to generate
sustaining funds.
Wola Nani a South African community based organisation has developed
strategies for community mobilisation and community funding which allows the
agency to promote its programmes and service delivery initiatives. Founded in
1993 at an economically insecure period of South African political history Wola
Nani has moved from a programme of volunteers with a budget of $100 US per
month to an agency employing 17 full time staff, 140 volunteers Client programme
shave increased form one to eleven and currently Wola Nai operates nationally.
Current programme budget of $350,000 has been generated.
Less than 10% of funding is gained from state grants. The remainder is a
community response to self funding initiatives and social marketing of agency
and the HIV pandemic. South Africa presently has 14.2% of general population
from ate natal clinics HIV positive. Approx 2.4 million people infected.
The workshop is a review of changing stigmatisation to community support for
issue and practical means of generating self sustaining funding from within local
community. All Wola Nani's projects which include counselling services, national
radio and magazine programmes, child care and income generating projects
have been initially funded from grass roots community support. Second level of
international funding occurs only when projects are up and running and funders
can see physically what is happening rather than "dreams on paper"
Given the rise of HIV infections in developing nations parallelled with the reduction of funds to service community self sustaining programmes are essential
ways ahead to protect service delivery.
Wola Nani would like to present a slide, poster and oral workshop on funding
development and resources.
34285 The importance of a self-governing organization in
informing people with HIV/AIDS
Dora Van Den Berg. 1e Helmersstraat 17 1054 CX Amsterdam, Holland
Issues: 18 months after the introduction of protease-inhibitors, more became
known about the effect of these drugs in combination with other anti-retroviral
medication. Apart from more information on side-effects and (non) options to
switch, this new-found knowledge included the various problems people encountered with keeping up treatment, and the treatment's impact on their social life. It
was also found that some information provided by various care givers to people
with HIV/AIDS was completely contradictory, and moreover, it was noted that
there are regional differences in treatment options.
Method: The Dutch HIV Association, an interest group run for and by people
with HIV, decided to inform its members and those directly involved about the
latest medical developments, and to give the opportunity to share experiences.
The HVN also thought it of equal importance to provide care givers with the
same information.
The HVN set up a program organized on eight locations. Both its preparation
and realization was competely carried out by the HIV Association, that is, by
people with HIV/AIDS. During the course of the project, the various "center hospitals", the regional offices of the HVN, and other organizations worked closely
together. The exchange of information and experiences took place by way of
lectures, panel discussions, and workshops. There were separate workshops for
people with HIV/AIDS and care givers so as to give everyone the opportunity to
speak as openly as possible.
People with HIV/AIDS could opt for four workshops concerned with experiencing
sexuality, therapy support, medical questions, and psycho-social aspects.
In the workshops for care givers, a variety of disciplines was represented,
which made it possible to get an insight into the problems various care givers are
confronted with.
Every day was evaluated, and the evaluations will serve as a basis for future
activities in the areas in question.
Results: In a relatively short period of time it proved possible to provide
both people with HIV/AIDS and care givers on various locations with the same
information.
Moreover, center hospitals, self-governing organizations, and regular institutions are now closely cooperating. And, based on the evaluations, it is now
possible to organize activities that answer the needs of people with HIV/AIDS,
and those directly involved, in a number of areas.
S34286 | How we in Sweden built up an umbrella-organization for
self support-groups for HIV-positive people
Christina Ralsgard. Gotlandsgatan 72 11638 Stockholm, Sweden
Objectives: To describe the development of an umbrella-organization for self

support groups.
Description of our experience: In the beginning of the HIV epidemic some
HIV-positive people started meeting in small groups, which developed to selfsupportgroups, the so called "Positive groups" around Sweden. In these groups there
was a thought about a solidarity forum, a solidarity organization, which could work
with the questions concerning all HIV-positive persons in Sweden, like hospital
care, drugs, social care system, discrimination, etc.

The National Association for HIV-positive people in Sweden, RFHP, started
in the autumn 1990. The first years were really modest and anonymus with
voluntary work. The leading people of the organization is a board elected by the
self support groups. In 1995 the board decided to engage a professional social
worker to get more stability in the organization and competence for developing
their questions in a more aggressive spirit. In 1996 the RFHP, got authority to
be called a Swedish handicap organization. This means the right to get state
subsidy and a great chance to be involved in commissions and report work in
the public area. In 1997 RFHP became a member of the handicap alliance in
Sweden. Today the organization has two employees, a social worker and a jurist
who work with several questions concerned to HIV-positive people in Sweden.
The conclusion is - the supportgroups joined together in an umbrella organization and got more impact on the questions which concerned the HIV-positive
people in Sweden. The selfsupportgroups could not have gotten this impact by
their own.
34287 Advocacy against exploitation of PLWHA
Joe Muriithii Muriuki, Catherine Muriithi, Michael Onyango. Kenya AIDS Society
PO. Box 76618 Nairobi, Kenya
Issue: The growing population of people with HIV/AIDS in Kenya has become vulnerable to exploitation by people selling various concoction as cure for HIV/AIDS
and require protection through advocacy and education.
Project: The number of HIV positive has grown rapidly in Kenya from a few in
1983 to the present 1 million. Catching on desperateness of these people and
without any known cure, people of all walks of life have come forward purporting
to be selling 'Cures of AIDS'. This project was initiated by people with HIV through
their national support group Kenya AIDS Society to advocate against selling
of products under the banner of cure whose efficacy and safety had not been
scientifically established. It sought to stop the sale of "Pearl Omega" the latest
purported cure. KAS was immediately supported by Kenya Medical Association,
Dentist and Practitioner Board of Kenya, Poison and Licensing board and other
human right pressure groups. The "Pearl Omega" was being manufactured and
sold by Prof. A. Obel one of the Kenyan leading researcher. The matter ended
with a legal tussle.
Results: The loopholes in the law that were being exploited were highlighted.
The Ministry of Health for the first time came forward and banned the sale of
"Pearl Omega". The media teamed up with PWAs to step up pressure of protection
against exploitation.
Lesson learned: Through campaign using media, professional groups and
even legal courts, people with HIV/AIDS can press for their protection against
exploitation and rally the community to support their cause.
| 34288 Drop-in centers in Montreal: Adaptation to the AIDS
epidemic
Anne-Fanny Vassal1 2, D. Thompson2, L.M. Gagnon3. 1AIDS Network IRCM
110, Av. des Pins 0, Montreal (QC); 2AIDS Community Care, Montreal; 3Maison
Plein Coeur, Montreal, Canada
Issue: The AIDS epidemic is changing rapidly and some new clienteles are
emerging with different needs, such as women, children and IVDU's. Drop-in
centers and their volunteers have to adapt to this reality while still responding to
the needs of the previous clientele, such as middle class gay men.
Project: (1) Existing resources were analyzed and a literature review was
produced; (2) emerging services in other organizations were reviewed; (3) focus groups were organized with volunteers of two drop-in centers to develop
questionnaires; (4) observation in the centers was conducted; (5) questionnaires
were distributed to volunteers and clients; (6) a report with recommendations was
produced; (7) follow-up will be undertaken to ensure adoption of the recommendations in strategic planning and their subsequent implementation.
Results: Final results will be released at the Geneva Conference. At this stage,
the project shows tendencies. (1) The clientele has changed dramatically over the
last two years, more and more clients with multiple problems attend the drop-in
(drug abuse, poverty, mental health, etc.). (2) The clientele is increasing as many
people living with HIV and AIDS become more ambulatory and respond well to
new therapies. (3) Some volunteers do not necessarily have the skills and abilities
required in order to help IVDU's and would need training sessions if the drop-in
centers reorient their services to the new clientele. (4) Some clients who have
used the drop for several years do not feel comfortable with the new clients.
Managing the drop-in environment to offer services to an increasingly complex
clientele is proving to be a difficult challenge.
Lessons Learned: Strategic planning of an ASO must take into consideration
the evolution of the epidemic, the changing state of client's health as they respond to different therapies, their economic constraints and the consequences of
desinstitutionalisation in the local health network. ASO strategic planning has to
be very flexible to adapt to the heterogeneous needs of clients. Tensions between
the ASO's traditional community base and serving the best interests of new and
emerging clientele requires inclusive strategic planning.

S34289 Estonian HIV+ movement
Alla Tusti. Pelguranna 15-18 Tallin EE0003, Estonia
In 19931, ESPO, Estonian HIV+ Society, was founded in the independent Estonia.
The organization was first of its kind among the Republics of the former Soviet