Report: The 8th National Convention of Indian Network of NGOs on HIV/AIDS (INN)

[Guest guest]

Summary Report: The 8th National Convention of Indian Network of NGOs

on HIV/AIDS (INN)Venue – Ganna Sansthan Auditorium, Lucknow. February

22-24 2004 [PART ONE]

DAY ONE 22 February 2004. inaugural session:

The 8th National Convention of INN was attended by 232 NGO delegates

from 17 states of India. The convention was inaugurated by Project

Director –UPSACS and Principle STAFF to Chief Secretary, Ms.Aradhana

Johri (IAS). Ms. Ramila Patel, a woman living with HIV from Gujarat

lit the lamp to inaugurate the convention along with other

dignitaries. Mr. Arif Jafar, Director, NFI-Lucknow welcomed the

participants from all over India to the 8th National Convention of

INN in a truly lucknavi andaaz, giving the participants a welcome

feeling to the nawabi city of Lucknow.

Ms. Johri expressed her great pleasure that INN has selected Lucknow,

UP as the venue for the 8th National Convention. Uttar Pradesh is

supposed to be a low prevalence state with a low level of awareness.

She expressed that the convention and gathering of NGOs would bring a

sea of change in the state and hoped that awareness programmes shall

be taken up by the NGOs. According to her, one of the most important

problems is in the sector of voluntary blood donation and she feels

that there should be an extensive campaign in the field so that more

and more voluntary blood donors should come forward and help the

system. She also expressed the need of working with street children

as they are most vulnerable because of their situation.

She congratulated INN, for its mission of building capacities of all

members working in the field of HIV/AIDS and requested INN to assist

in the capacity building of Uttar Pradesh NGOs. Additional Director –

UPSACS - Mr Chandrabhan was also present at the inaugural function.

In her presidential address, Dr RadiumBhattacharya welcomed the 232

delegates from all over the country. She talked about the

achievements in the field of HIV/AIDS since 1994. The theme of the

convention – the 8th National Convention of INN – is Vulnerability

Stigma and Discrimination –What has changed since 1994? Dr

Bhattacharya emphasized that surely India is progressing from the

stage of denial to acceptance. Political will has emerged to change

the situation of AIDS in India, the government has recognized its

responsibility to distribute drugs for ARV, which has been taken up

at the moment for six states. The outreach and vulnerable joined the

mainstream activism to demand their rights and justice in society and

for their voices to be heard. Dr.Bhattacharya emphasized that

HIV/AIDS is a developing problem, thus new challenges are constantly

emerging, therefore NGOs cannot be complacent – there is still a long

way to go and to go together.

The voice of the positive people echoed with the voice of Ramila Ben,

who said, she feels pain to take her ARV treatment when she finds

that there are lakhs who are unprivileged and do not have access to

the drugs. She raised her voice to demand drugs for everyone and not

only for 100,000 people of six states – as her treatment (ARV dugs)

has given her quality life. She also emphasized the tremendous need

of counseling for people infected and affected by HIV/AIDS, and

shared how counseling has helped in keeping her alive for the last 12

years with the virus.

Dr.Bhattacharya once again welcomed the participants who represented

15 states of India. 10 years of networking has yielded state level

networks and the 8th National Convention is being attended by three

state level NGO networks – Orissa Network of NGOs on HIV/AIDS (ONN),

Tamil Nadu Network of NGOs (TNN) and Gujarat Network of NGOs on

HIV/AIDS. A cumulative membership of NGOs along with the state level

networks is around 1000.

Dr. Bhattacharya said the newly emerging future challenges shall be

identified during the convention and action plans will be drawn to

deal with them. Dr. J. S.Deepak, Executive Director, SIFPSA explained

the supportive role played by SIFPSA to the government of Uttar

Pradesh in mitigating the spread of HIV along with its massive

programme targeted to women's reproductive health. Dr.Deepak

congratulated INN, for holding the 8th convention in Lucknow and for

the involvement of the NGOs who are playing a key role in the

mitigation of HIV/AIDS. Mr. Shivananand Khan – Executive. Director

Naz Foundation International, expressed his happiness for hosting the

8th National Convention of INN and presented the vote of thanks .

Plenary

Vulnerability, Stigma and Discrimination : What have you learnt ?

Male-to-male sex, HIV/AIDS and India- have we learnt anything?

– Mr. Shivanand Khan, Naz Foundation International ; Adolescent

Reproductive and Sexual Health Education – Dr.Rakesh Chandra ; The

epidemiology and impact of IDU in India – Mr. Luke Samson, Sharan ;

Rights of Positive People – Dr.Balwant Singh India HIV/AIDS Alliance;

Women Vulnerability – Dr. Nishi Pande, Academic Staff College, UGC.

The objective of the plenary session was to identify issues on

Vulnerability, Stigma and Discrimination : What have you learnt,

what could be the possible future challenges with these groups, what

possible action plans could be drawn through group discussions on

each topic. Male-to-male sex, HIV/AIDS and India- have we learnt

anything? Mr. Shivananda Khan explained the problem that, MSM has

been taken to be a small group of homogenous individuals, isolated

from the general male population. He talked of who MSMs are, and how

to reach kothis, hijras and occupational groups. Responses to the

global HIV/AIDS pandemic and its local manifestations cannot be

effective unless the rights of those infected and affected by the

virus are clearly and unequivocally addressed.

He highlighted that vulnerability for this group is heightened due to

significant levels of sexual exploitation, Very few appropriate

sexual health interventions and services are available in a country

of over one billions people, Recognition of significant levels of

male-to-male sex work, Lack of appropriate condom and water-based

lubricants, Stigma and discrimination is multiplied enormously in

regard to feminised males such as kothis and hijras, and for gay-

identified men and this further increases the vulnerability to HIV

infection and spread and reduces even further access to appropriate

services

Adolescents Reproductive and Sexual Health Education

Dr. Rakesh Chandra, in his address on Adolescents and Sexual Health

Education pointed out that this education should include the life

skills approach rather than just biological awareness. He emphasized

the importance of democratic dialogue involving all stake holders,

the need to distinguish between " moralizing " and the moral approach

of human rights and dignity which need to be emphasized, and

ntegration of these issues into general curriculum design.

Reproductive and sexual health programme should be a programme on

human relationships. The reproductive and sexual health

implementation programme has two main drawbacks – non implementation

because of lack trained teachers, lack of logistics for follow up and

evaluation. Teachers are not concerned. The programme is still being

conducted as an `add-on' – `cut-off' from the curriculum design.

There is also a strong absence on gender perspective in most

programmes.

The Epidemiology and impact of IDU in India.

Mr. Luke Samson, drew attention of the delegates towards the global

picture in respect to IV drug users, which has increased

dramatically. The first case was diagnosed in 1986, today there are

7.2 million cases in S.E. Asia. There is a similar pattern of

progress in all countries including India. The Epidemic in North East

was to grow and diversify, depending on the supply of opiates. The

epidemic is also spreading throughout North East, but inadequate

surveillance has resulted in underreporting.

It is now recognized that treatment is a key method of mobilizing on

injecting population interventions, and this should be done through a

continuum of services. Mr. Samson talked of the need to integrate

Needle Syringe Exchange Programme with HIV/AIDS programmes for

further advantage of IV drug users. There is also the need to

include a wider treatment programme for IV drug users

Rights of Positive People-

Dr. Balwant Singh pointed out that vulnerability, stigma and

discrimination in relation to people living with HIV/AIDS are

closely interlinked and often poorly understood. It is important to

understand the sources, contributing factors, manifestations and

contexts of vulnerability, stigma and discrimination . This includes

issues of sexuality , gender, race and ethnicity, class and fear and

their respective roles in the vicious circle of stigma and

discrimination. Dr. Singh pointed out that since 1994, the visible

changes that have occurred and the major gain is the greater

understanding and some response to issues of stigma and

discrimination , establishment of several PLWHA support groups and

these helped in greater access to care, support and treatment though

much more has to be done. There is a need to scale up the Public

Health System so that PLWHA can lead a quality life. Meaningful

execution of GIPA is very important. Dr. Singh also emphasized the

role of faith based organizations which would help in mobilizing

community support and resources for PLHA and their families.

Women Vulnerability

Dr. Nishi Pande said that ten years ago women were already

extremely vulnerable in the Indian social and economic and political

context. In the last ten years, they have become even more

vulnerable, particularly with the HIV/AIDS context and with the

acceleration of the epidemic. Women's control over their bodies has

not improved, although awareness on these issues may be more

widespread. The recent ARV policy and decisions of the Government of

India to provide ARV to HIV positive women, require strong

involvement of women, both for information and for informed consent

during anti natal checkups. Women are vulnerable at all places,

whether at home, work place or on the streets. The reason for this is

identified as lack of decision taking power – which increases their

vulnerability to HIV, manifold. The need is to empower the women in

all respects. Mother to child transmission brings the burden on women

who have to face the testing and other processes. Fathers are not

tested, though their testing does matter in the process.

The presentations of the session were followed by group discussions.

Five groups worked on the identified topics and came out with

probable solutions /action plans on the identified problems and were

presented in the plenary session.

Outcome of group discussions

Male-to-male sex, HIV/AIDS and India- have we learnt anything?

Facilitators :Mr. Shivanand Khan and Mr Arif Jafar Understanding

issues of MSM – and who are MSM? The group understood that to

identify MSM is indeed difficult, MSM are not part of a group or

community, it is a `behaviour'. Why are MSM vulnerable? – The

facilitator talked of the risk of HIV transmission while practicing

anal sex, another point of vulnerability is that, just like sexual

exploitation / abuse takes place with women, often `kothis' are

exploited in the same way and rape and sexual abuse are common.

Adolescence plays an important role in MSM behaviour. Many

adolescents in their growing up stages experience attraction towards

slightly older boys, and have sex with them. They may have more than

one partner and with this practice, MSM becomes a behaviour with

them. It is a misconception amongst many that MSM behaviour is

common only amongst the poor. It is true that there are many men who

sell their bodies as a means of livelihood. Difficulties faced by

MSM: Societal attitudes * Psychological and emotional turmoil

* Stigma against the group * Laws * Attitude of the police.

The programme to work with MSM should be paid importance to establish

an enabling environment where people can come and open up their mind.

It is also necessary to prepare educational packages with clear and

accurate information on MSM behaviour, advocacy programme to deal

with stigma and discrimination. It is also necessary to provide

health services which should be accessible, user friendly, non

judgmental and confidential.

Adolescent sexual and reproductive health

Facilitator – Ms. Sunayana Walia Need for strengthening adolescent

programmes by Monitoring on-going programme activities for measuring

impact ; giving correct information; respecting choices; addressing

sexuality issues ; involvement of parents ; peer education ; training

of teachers ; social support (enabling environment)

Women vulnerability

Facilitators : Dr.Radium Bhattacharya, Bobby Ramakant The group was

very active as most of them are working on women issues. Why are

women vulnerable ? This question was answered by brain storming.

Finally, the group focused on the immediate need of the NGOs to

prevent or reduce the vulnerability of women within the prerogative

of HIV/AIDS/RTIs program plan. The group identified the NGOs of

different regions who could be helpful to each other in capacity

building and intervention. The group drew a two year action plan with

the following components: Access to information and education,;

negotiation skills; license to sex workers ; prevention options for

women. To make this programme a viable one, the group felt the need

of capacity building and identified the IN N platform as the resource

centre. The group also identified the regional NGOs who need

capacity building and those who can extend capacity building on the

identified topics.

The Epidemiology and impact of IDU in India.

Facilitator – Mr. Luke Samson and Mr. M. L. Prabhakar Treatment is a

key method of mobilizing an injecting population in interventions.

Detoxification, Rehabilitation, Medication and inclusion of HIV/AIDS

issues in the programme, thus offering a continuum of services.

Rights of positive people

Facilitators – Mr. Balwant Singh – Mr. Rajendra ,Identify and

communicate INN mission and objectives in relation to PWHA, Promoting

cross group understanding and awareness, Promoting a common platform

for issues based on gender and sexuality –understanding of sex and

sexuality – Faith based organizations- Religious groups and leaders

can also play a significant role in mobilizing community support and

resources for PLHA and their families, and they can create a

conducive environment in communities for HIV/AIDS programmes,

Improved quality of life.

Technical Paper:

Clinical Trials of Microbicides in India and the role of NGOs in

these trials Ms. Neelam Joglekar – Nari (ICMR) Pune, Ms. Mangala

Patil – Jagruti (Pune) The purpose of this technical session was to

provide members with an update on developments which can influence

their future activities. The technical paper on Clinical trials of

microbicides in India was presented by Ms. Neelam Joglekar of NARI

and the role of NGOs in clinical trials – was presented by Ms.Mangala

Patil of Jagruti, Pune. Ms. Joglekar stressed the importance of

community support to make clinical trials effective. The

presentation gave a good overview of the trials going on in India for

making prevention options for women available in India – thus

empowering them with tools in their own hands.

The social dimension requires community mobilization and involvement

to help ensure adequate communication to potential users, allay fears

and misapprehensions and build up systems of protection against

discrimination due to disempowerment or ignorance. The role of NGOs

is therefore critical to the future of microbicides in India and INN

may have a responsible and important role to play. Mrs. Neelam

Joglekar – shared her experiences and said that the HIV epidemic is

not restricted to persons with high risk behaviour, as it is normally

believed, but has also reached women with no risk behaviour of

their own. Majority of married monogamous women get HIV and STDs from

their own spouses. She also pointed out that 75% of men never used

condoms with their non sex worker partners, especially with their

spouses.

Hence, there is an imperative need for female controlled HIV

prevention options. There are few female controlled HIV prevention

options available which include microbicides, a hopeful option to be

available in future. She referred to the trials of two products in

Pune, Pro 2000/5 Gel (P) and Praneem Polyherbal formulation (vaginal

tablets). These studies are being conducted in Pune, by National AIDS

Research Institute (NARI). Apart from these, National Institute of

Research in Reproductive Health (Mumbai) conducted some studies under

Phase I and the results are awaited.

Ms. Mangala Patil of Jagruti Seva Sanstha of Pune, is a leading

social worker who motivated the community women to take part in the

Phase II trials of microbicides. She said that NGOs can play an

important role in bringing the concept of microbicides and to

translate the new discovery into a Community Health Programme. She

said that community women through Jagruti are taking part in the

trials through partnership programmes but to reach to successful

partnership programmes certain basics like, transparency, proper

information of research strategy and objectives, technical support

from the research group should be maintained, apart from the

confidentiality issues. There should not be any personal gain

involved in such studies, she said.

______________________________

Dr.(Ms) Radium D. Bhattacharya

President, INN

Regd Office:B 01 Siddhachakra Apartments

Ellisbridge, Ahmedabad 380006, India

Phone:+91 79 26575282

Fax +91 79 26575962

email: inn94@...

[Remaining part of the report will be posted in the coming days.

Moderator]