AN INITATIVE TO BREAK THE SILENCE IN TAMILNADU

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Title: AN INITATIVE TO BREAK THE SILENCE IN TAMILNADU
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AIDS

Contributed by

NGOs/CBOs

Initiated by

Research Institutions
Tamilnadu State
AIDS Control Society
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Media
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Positive Network

THE DURBAN REFLECTIONS
Tamil Nadu/State aids Control Society organised 0/meeting onthesFJuly, 2.000
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for the participants from Tamil Nadu- of the aids 2000 International Conference

held in Durban-, South Africa/.

The participants who attended- the Conference comprised of persons from various
disciplines working in- thefield- of aids in Tamil Hadco. It was represented by the tegos,

press, people living with aids, persons fro:-.-, lunding organisations, specialists from
hiv/aids treatment and counselling centres

lhe welcome■' I- i;. ■ - v. ■ •

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■ by ~)r. K. Qopal, IAS, Project Director,

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: ys,ps ^-se of this meeting, according to

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refernice

to name a-few

■e p septions and oeperiences with/

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tare . iv/aids preventive and control
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revealed that each/ one had special

Dn-Li^/ie. vodowlg ttis, Here were discussions on the relevance of

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;■■■ strategies from concepts into

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. < ncet-'wds in Tamil ‘-.'adu/. Thegeneralperception/ was that Tamil

rtt --:. needed specific interventions to tackle hiv/aids more effectively. This meeting

serves r.-s a, commonplatform to voice this and evolve certain strategies.
The Conference ended on 0/ positive note with the delegates unanimously proposing that
action needs to be taken based on common concern. The areas of concern have been
presented in theform of resolutions.

Mr. Hariharan of.

2

GLOBAL EEEORTS
The city of Durban in South Africa, the host of XIII International Conference on HIV/AIDS

has generated sufficient enthusiasm and energy among the participants who attended the
Conference. The conference had become the focal point for the convergence of the thoughts,
concepts and also innovative models in the field of control of HIV/AIDS, the most serious public health
problem challenging the developmental processes and survival of human race in
advanced and under developed countries. More than 12,000 participants from all over the
world, across 178 countries and from different sectors such as, Research, Planning, Health
Administration, NGOs, Media, Community and policy, have made the conference a grand success.
The Conference has also motivated the Governments all over world to concentrate on
effective and result oriented prevention strategies, appropriate drugs or vaccine to tackle the
menace of HIV/AIDS.

TRANSMISSION OP EXPERIENCE INTO ACTION

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About 200 individuals from India participated in the XIII International Conference held
at Durban, out of which 30 representatives were from Tamil Nadu. This reflects on the determi
nation of the State and participants to combat the infection hazard which is spreading very fast across
all the starta of the community. Representatives from the State Government, Research
Institutions, Non Governmental Organisations (NGOs) and Community based organisations,
(CBOs), Media and persons living with HIV/AIDS attended the Conference. With an intention
to utilise the information available, it was decided to replicate the experience and concepts
in Tamil Nadu, with suitable modifications according to the prevailing conditions. Tamil Nadu State AIDS
Control Society (TNSACS) has taken a lead to invite the participants of the conference to evolve and
come up with the “Chennai Agenda” for the State. This reflects the strategic role to
be played by different partners and their responsibilities. The issues, which are applicable to
the State were identified by this group which comprises of the views of all the stakeholders.
The Chennai Agenda declared by the participants is considered as an optimistic move to bring
the partners together to transform the thoughts into action for better implementation of the
HIV/AIDS prevention and control programme in Tamil Nadu.

SHARING THE RESPONSIBILITY

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Several issues were focussed in the Chennai meet organised at TNSACS. The present
epidemic scenario in the State, the delivery mechanisms developed so far to tackle the epidemic,
the role played by the State Government, research institutions and NGOs, and the several
related issues were deliberated upon before arriving at a consensus on the common agenda.
The Chennai agenda fixes the responsibility on the Government and the partners to
achieve the common objective, to reduce the prevalence of HIV/AIDS in Tamil Nadu. The priorities
are expected to be incorporated, wherever possible, in the strategies of the Government, the
media, the NGOs, and research institutions.

RESOLUTIONS:

AAedla shall be involved to create awareness and behavioural change and, to mould a,
favourable social, atmosphere in the State. This willfacilitate am environment free from
social stigma- and discrimination. More media representation, shall be given, in, notional
and international conferences to get many more sensitized and, to contribute to the

There shall be coordination, of efforts among the different States to ensure uniformity,
and- to avoid any gaps for the wellbeing of all the- States and, the nation,. The upscaling
p oje-cts, replicating acid adopting intervention, models of Tamil Nadu to other States
shall be queen, due attention,
Coicstant coordination of different agencies involved in, prevention and control
<■:'ivitic-; shall be ensured, to have access and. flow of information on experiments,
■ r:.vtd success st.- res of different stakeholders and the Tamil Nadu State AIDS
,
■ .-~ty shall lake the- responsibility for the same, for the benefit of every partner.
■■■’ ■' wlii, and the- active involvement of local C/overnment, and the- policy makers
shall be mobillsed to give a real thrust to the, anil HIV/AIDS efforts and to maize- the
p o.fr-,.-.mns more acceptable and, reachable to the communities in the State.

efforts -'all be-- focussed towards strengthening of tlte network, of positive people and
also linking the groups for better results. Strategies shall be- evolved to eliminate social
stigrna, and, discrimination, against the- affected, in, consultation with people- living with HIV.
Informed consent of the individuals shall be made mandatory for all HIV testing and
appropriate counselling methods and practices shall be followed. HIV counselling and
testing of pregnant women, shall be made mandatory in due course of time to enable the
■children, born, to HIV positive women, live free from HIV infection.

More thrust shall be given, for sensitizing adolescent girls for preventing HIV infection
by adopting appropriate awareness building strategies and developing sensitization
modules.

Emphasis shall be, given, to enhance the knowledge levels, skills and the, presentation
capability of NCjOs to ertable them to malce an, impact in, the, National and International

Research studies shall be undertaken to study the impact of various drugs and to assets

More, number of voluntary Counselling and Texting Centres shall be, created and a, system
shall be, evolved to ensure better counselling ofthe, individuals.
Research shall be encouraged to study homosexual practices among students and to
evolve intervention,programmes to tackle the problem,.

involvements of religious leaders, opinion lenders in, the, community and the, community
as a, whole shall be mobilised to strengthen, the prevention efforts and to enhance the
Societal role.
The high risk, groups shall be identified and appropriate targetted intervention, programmes
shall be evolved to reach them for positive behavioural change. Migrant labourers and,
men, having sex with men shall be included in the intervention, efforts.

Appropriate culture specific, inter vention, programmes shall be developed to reach
the affected, and unaffected population and to bring al oat attitudinal changes, among
them.
HIV/AIDS programme shall, be, integrated onto other Health related programmes to malce
the, programme sustainable; The, effective models for home based ca,re shall be, evolved
and isnplemeKted. The, multi sectoral approach shall be, initiates! and the, Police, Eorce shall
be, sensitized on, the, epidemic to extend support to NQOs in reaching the- high rishgroups.
Management of private medical institutions and private medical practitioners shall be
sensitized to avoid denial of treatment services to the HIV/AIDS affected. Relevant
training programmes shall be developed to train, all concerned to handle the affected.

Industrialists and business houses shall be involved in, HIV and AIDS programmes to
further strengthen, the initiatives aimed at creating awareness and strengthening the
Health care delivery system. The funding agencies shall be sensitized on, the culture,
regim-specificpsrogrammes and also on, the emerging issues.

THE VIEWS & THOUGHTS...

I he participants shared their experiences learned at the conference and expressed
their concern with regard to the need for intervention in specific areas in Tamil Nadu. The points
are summarised below:

Dr. Suniti Solomon, YRG Care, Chennai, reported that where informed consent was concerned,
unlike other countries the patients in India either did not understand or like signing for this. She
learnt that there were incentives given for breast feeding in some countries and the ethics of this
needed to be examined. According to her, in Canada for instance, testing for HIV was
mandatory among HIV positive women, and there was no reason as to why India should feel
"bad’ about this. She reported that medication through free Nevropine was covering only 10%
of the developing countries needs. She raised the question as to who bears the balance 90%
of the cost.
Dr. Deivanayagam. Superintendent, Govt. Hospital lor Thoracic medicine, Tambaram, Chennai,
reported that the conference was very interesting. He stated that Uganda had a people’s
movement to tackle HIV/AIDS and there was need for such a movement in India. According to
him, it was important to include the participation of opinion makers such as lawyers, religious
leaders etc. from the community in the HIV/AIDS intervention programmes. He added that the
message of sexual abstinence to prevent HIV/AIDS needed to be explored.

?<<■. G. P.-amcd Kumar, Special Correspondent, "The Hindu”, Chennai, said that it was a pity that
very is ■■ newspapers covered the event from India unlike Latin American countries for instance.
According to him, one of the main issues at the Conference was unaffordability of medication.
He reported that it was heartening and impressive to note a high visibility of positive people who
attended the conference from both India and other countries. He added that there was need
for more programmes in schools/colleges; and that the cooperation and inclusion of the police
force for the programmes was important.

Mr. Ganesh, YRG Care, Chennai, reported that there was a need for specific awareness
programmes on HIV/AIDS prevention among adolescents in Tamil Nadu. According to him, the
Conference had conveyed the message that this group was vulnerable and the future of this group
needed to be addressed.
Mr. Hariharan, ICWO, Chennai felt that there was a need for more presentations through posters
and research papers by NGOs from India. According to him, the quality of the presentations was poor,
especially the posters. He proposed training programmes for NGOs in this regard.

Mr. Stanley Moses, ACCEPT, Chennai, said that the organising level of the AIDS Conference was
very impressive. He proposed that India in future should host a similar Conference. He stated
that there was a balance in the programmes between the scientific groups and community sessions.
He added that unlike in the West where mother to child transmission had come down, India had

much to achieve in this regard. He felt that there was need for more interventions for men having
sex with men as there were a large number of gay people in Tamil Nadu.

Ms. Celina D’Souza, Indian Network of People Living with HIV/AIDS, Chennai, reported that there
were many debates and discussions at the Conference on the sexual and reproductive rights of
positive women, and the rights of pregnant women. She stated that there were meetings amongst
positive women too. Though the issue of consent was discussed extensively at the Conference,
she felt that the HIV/AIDS infected just giving consent was not enough. It was important for
the concerned persons to understand the implications of it and the responsibility was with the
Treatment centre.
Mr. Sivan, AIDS Prevention and Control Project, Chennai, observed that the various presentations
made by the NGOs from India was not up to the mark. Posters, oral presentations and research
abstracts needed further refinement. He stated that there was a need for the NGOs to be trained
and imparted skills in this area. According to him, there was a demand for publications by APAC
at the Conference. He commended the news coverage by Mr. Pramod Kumar of ‘The Hindu’
newspaper on the Conference.

Ms. Kausalya of Positive Women Network, reported that she was able to share with other
delegates about the self-help group for positive people in Tamil Nadu. According to her, there
was a lot of curiosity to know the culture and religious practices in India by participants
from other countries. She reported that during the Conference she was able to visit a family
that was affected by AIDS. Ms. Julie, of the same NGO, added that it was said that it was still difficult
to disclose the identity or the HIV status of persons in the Indian condition due to social stigma.
Ms. Rita James of Teddy Trust, Madurai, stated that the poster presentations were informative.
She recommended that there was a need for the children of sex workers to be addressed
and that there were very few organisations that offered services for this group. Boarding
schools, daycare centres etc. needed to be set up. She learnt about the effective use of hand
puppets for communication of information to the community. Ms. Amanda, Teddy Trust, reported
that such Conferences enabled all those working in the field to share their energies and
increased their motivation. According to her, there was a need to involve more business houses
to participate in the HIV/AIDS issue and a global council for this was recommended by her.
She stated that these business houses could sponsor a part of the programmes and should be
able to include it in their agenda.
Ms. Anandhi Yuvaraj of positive women network, Erode, reported that she was able to help
to conduct a small research study through interviews, on feedback about the Survival kit for
Positive Women. She felt that such a kit would be useful in Indian settings. According to her,
the multi-lingual nature of India would need careful translation if it were to reach all communities. Words
like “lesbian’ for instance, still needed proper translation in Tamil. She reported that rape
was a social problem and was extensively addressed through role plays in South Africa. She
added that it was impressive that condoms were made available at the University of Natal’s gate.

Ms. Lalitha Kumaramangalam, Prakriti, Chennai, stated that it was sad that there was less
representation by participants from Asian countries and women in particular. She stated that
there could have been more discussions at the Conference on how HIV/AIDS can be prevented

among heterosexual men. According to her, the debate of gay movement vis a vis men having sex with
men in India was more a political issue and she stated that the behavioural issues needed
to be addressed. She suggested the linking up of positive peoples’ groups and people/
NGOs working on HIV/AIDS to work together as they tended to drift apart. She added that it
was heartening to see two Ministers from the Indian government were present at the conference
and such political will was necessary. She recommended networking with other NGOs to care
for the orphaned children of AIDS infected individuals and linking HIV/AIDS with other health programmes
in Tamil Nadu. She added that Industrial houses, the Rotary etc. were showing
keen interest in HIV/AIDS.
Dr. Pratap Thariyan, Professor and the Head of the Department of Psychiatry, CMC, Vellore,
said that India needed to lobby more for the availability of free medication for the HIV/AIDS
infected persons. The long-term effects of drug resistance also needed to be studied according
to him. He recommended setting up Voluntary Testing Centres in Tamil Nadu through a planned strat
egy. He stated that trained counsellor were yet to actually work with infected individuals.
Such centres would be able to provide the counselling service at prevention and treatment
intervention levels. Topics suer as nutrition and general health care were to be included. The role
of APAC, Chennai in setting up such centres along the highway was suggested by him.
Dr. Ganapathy, Madras Medical College, Chennai, stated that the Community Indaba programme
organised at the conference was impressive. He stated that through syndromic management,
Africa was able to effectively control STD cases. He suggested that there was a need for
mass rrost;nur-' packages to reach the high risk groups. He reported that there was much
advocac- oi x'.male condoms in Africa. According to him, there was a study in Chennai that
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of students had homosexual contacts, and there was a need for intervention
.or ;hi.- group. He also stated that there was a need to start programmes for very young children
being tits future generation.
\ .... USAID, New Delhi, observed that a long term approach to all interventions was a lesson she
h:
' jiiiii-.s Conference; and ‘Care’ was now an integral part of all prevention programmes. She felt
Tiai fliers could have been more discussions on opportunistic infections. She reported
that fi.eic was a need to involve the policy makers and NGOs for a more effective intervention.

Dr. Kumarasamy, YRG Care, Chennai, reported that the conference was useful and that there
was a need for more participation from the medical community in India. According to him, there
was not much new data on vaccines developed for HIV/AIDS and trials were still underway.
He reported on learning that there was resistance to Nevropine among pregnant mothers. He
added that there was a need for scientific data on Sidha treatment trials for HIV/AIDS.
Ms. Lakshmi Sankaran, VHS-APAC, Chennai, stated that during her field visits in Tamil Nadu,
she observed that the patients preferred treatment from private doctors, physicians from
distant towns or quacks compared to STD clinics in government hospitals. Factors such as
non-availability of the doctor/rnedical staff at the outpatient unit, lack of confidentiality, stigmatis
ing attitudes etc. were some of the reasons reported by the patients. According to her, some of

these doctors had already received training in the syndromic approach for treating STDs.

Dr. Bimal Charles, Project Director, APAC, Chennai, recommended that there was a need for the
community to be involved in the programmes and not just as a token involvement. He stated that
with government support, there could be more effective programmes in Tamil Nadu linking
Prevention, Care and Testing facilities under one roof. He added that the attitudinal change
among the Doctors in Government service was important to enable in providing non-stigmatised ap
proach for the treatment of the patients. New target groups such as men having sex with
men, migrant labourers for instance were to be developed. He recommended setting up of
feasible home based models for the HIV/AIDS infected persons.
Dr. K. Gopal, IAS, Project Director, TNSACS, Chennai, reported that the Conference enabled him
to learn about the success stories in Uganda. He reported that AIDS is a crisis of governance
and not just a health problem. He reported that India could end up in a catestrophe like Africa
if the problem is ignored and that there was need for more targeted interventions. He called
for the need for coordination among various groups besides high risk groups. He added that
as it cost the patient at least Rs 3,500/- per month for anti-retroviral therapy, there was a need
to explore other alternative therapies. He recommended that a Directory of services for
HIV/AIDS be compiled and publicised. He requested the participation of all NGOs by providing
information for the benefit of both positive people and the general public. He has requested
all the stakeholders to share the information, experience, succcess stories to evolve a strategy
to combat the HIV/AIDS.

CONTRIBUTORS BOR CHENNAI AGENDA

Dr. K. Gopal, IAS.,
Project Director,
Tamil Nadu AIDS Control Society,
Chennai.
Dr. Bimal Charles,
Project Director,
AIDS Prevention and Control
Project,
VHS/APAC, TTTI Post,
Adyar, Chennai -113.
Dr. N.M. Samuel,
Dr. MGR Medical University,
Guindy,
Chennai - 32.

♦

Ms. Lalitha Kumaramangalam,
Prakriti,
No. 6, Jaganathan Road,
Nungambakkam,
Chennai - 34.

o

Mr. G. Pramod Kumar,
Special Correspondent,
‘The Hindu’
859, Anna Salai,
Chennai - 600 002.

❖

Ms. Celina D’Souza,
INP+,
20C, Thirumalai Road,
T. Nagar,
Chennai -17.

♦

Dr. Poornima Madhivanan,
YRG Care,
No. 1, Raman Street,
T. Nagar, Chennai -17.

♦

Ms. P. Kousalya,
Positive women network,
29/1, Velu Street,
West Mambalam,
Chennai - 33.

I

Dr. Suniti Soloman,
YRG Care,
1, Raman Street,
T. Nagar,
Chennai -17.
Dr. C.N. Deivanayagam,
Superintendent,
Government Hospital for Thoracic
Medicine,
Tambaram Sanatorium,
Chennai - 47
j
Dr. M. Ganapathy,
STD Specialist,
Madras Medical College,
Chennai.

Dr. Pratap Thariyan,
Professor and Head of the Dept.
of Psychiatry
Chritian Medical College
Vellore.

Ms. Anandhi Yuvaraj,
Positive Women Network, Erode
No. 16, Muslim Street,
Alagadam - 638 314

*

Ms. Mary Julie,
Positive Women Network,
29/1, Velu Street,
West Mambalam,
Chennai - 33.

Mr. Ganesh,
YRG Care,
No. 1, Raman Street,
West Mambalam,
Chennai - 33.

♦

Mr. Ramkumar,
Centre for Social Reconstruction,
26/1,. Beach Road,
Near Hindu College,
Nagercoil.

Dr. Kumaraswamy,
YRG Care,
No. 1, Raman Street,
T. Nagar, Chennai -17

♦

Mr. Zafarullah,
Assistant Director (STD),
APAC/VHS, TTTI Post,
Adyar, Chennai-113.

Mr. Stanley Moses,
ACCEPT,
No. 189/4,1st Street,
12lh Main Road,
Anna Nagar, Chennai - 40.

♦

Mr. Louis Arulraj,
Prakriti,
No. 6, Jagannathan Road,
T. Nagar, Chennai -17.

♦

Ms. Rita James,
Teddy Trust,
Tenkasi Road,
Alampatti Post,
Tirumangalam - 625 706,
Madurai District.

♦

Ms. Dora,
USAID,
New Delhi.

♦.

Ms. Lakshmi Sankaran,
VHS - APAC,
Chennai.

Mr. Hariharan,
Indian Community Welfare
Organisation,
1369,18th Main Road,
6,h Street,TBIock,
Vallalar Colony, Anna Nagar West,
Chennai - 40.

Mr. Sivan,.
AIDS Prevention & Control Project,
APAC/VHS, Adyar,
Chennai-113.

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