Consultation of PLHA, Law and Media for Obtaining Positive Outcome of NACP-III for Sustainable Development of the Community - Chandigarh

Consultation of PLHA, Law and Media for Obtaining Positive Outcome of NACP-III for Sustainable Development of the Community - Chandigarh
Chandigarh Network of People Living With HIV, 18th October 2007,
at CYP Asia Center, Sector 12, Chandigarh , India
http://groups.yahoo.com/group/loveandaids/message/5006

On October 18, of this month Drop-in-centre has completed two years of existence. Past few years were successful years in terms of achievements and obtaining results pertaining to Advocacy, IEC activities and issues related to care and support. On the advent of NACP-III, PLHA thought that participatory approach of including important stakeholders can help the community obtaining positive outcomes of NACP III objectives.

One day workshop on ‘Consultation of PLHA, Law and Media for Obtaining Positive Outcome of NACP-III for Sustainable Development of the Community - Chandigarh’ was conducted by Chandigarh Network of People Living with HIV on 18th October, 2007 at the CYP Asia Centre. Last year State Consultation on ARV Treatment Access, Care, Support and Rights of PLHA – Chandigarh was organized by INP+ and CNP+ on 18th and 19th October, 2006 at the CYP Asia Centre, Chandigarh, India for detail report visit:
http://www.solutionexchange-un.net.in/aids/comm_update/res-0 6-191006-02.doc

This year also we initiated the same and invitations for participation and Facilitation were sent to different organizations and individuals in Chandigarh. Around 40 PLHA and their family members from Punjab, Haryana, Chandigarh, they were facilitated by trained facilitators who were actively working in the field. This workshop was well received by the media. All the participants appreciated the arrangements made for the conduct of this Workshop and participated in various sessions of Workshop and deliberated on the Consultation of PLHA, Law and Media for Obtaining Positive Outcome of NACP-III for Sustainable Development of the Community. The key issues, suggestions and commendations on different issues are described below.

PLHA, Medical Professionals, Para Medical, lawyers, social activists, NGOs, academicians and others took part in this Workshop. The Workshop was open to all, by way of information through invitation.

The participants, facilitators and others were welcome to workshop by Commonwealth Youth Ambassador for Positive Living Ms. Pooja Thakur, President CNP+ and she shared that with regular initiative the members of network have 178 member families of the PLHA and a majority of them are struggling to get employment. Moreover, they are unable to find jobs, which are easier on their fading health and the network also supports 72 children and has been requesting the UT Administration to give them space to build a hostel for thechildren. Children who are on Anti-Retroviral Treatment need special care. They have to be given nutritious diet and regular medicines. Most of them, however, live with their relatives, who cannot take care of the children this way, Pooja focused. The members of network are from Punjab, Haryana, Himachal Pradesh and Chandigarh. She added the increasing awareness about HIV/AIDS, however, has not helped the PLHA to lead a normal life. They still face discrimination in society and many have lost their jobs due to the disease, and an expensive second-line treatment that majority of them cannot afford. Moreover, there is no concrete policy for HIV/AIDS orphans in the city

The workshop was inaugurated by Mr. Raj K. Mishra, Regional Director, CYP Asia Centre. He exhorted the participants to organise themselves, and work for the development of the Community. This can be done by first empowering themselves through education and skill building. After the inauguration Mr. Nawendu Jha highlighted the Objectives of the Consultation and Brief on Agenda of Workshop was also discussed.

PLHA had come from far off areas like Punjab, Haryana and Himachal Pradesh along with them were their HIV positive children — some who have been on treatment at the PGI for as many as seven years and have been healthy.

The technical sessions were conducted by different facilitators Mr. Raj K. Mishra, Regional Director, CYP Asia Centre - Understanding NACP-III, Dr. Vinita Gupta, Jt. PD, SACS, Chandigarh - Role of SACS for Strengthening PLHA with Reference to NACP-III , Dr. Kavita Chawan – Goals of NACP-III on Rehabilitation, Care and Support, Strategies of SACS for Positive Out Comes, Dr. Avnish Jolly – Understanding PLHA , Dr. Archana Singh, Department of Mass-communication, Panjab University, Chandigarh- Role of Media in context to PLHA and Mr. Raman Chawla, Lawyers Collective, New Delhi - HIV /AIDS Bill. Open Discussion on Economic Empowerment of PLHA was also conducted by Mr. Nawendu Jha, Project Coordinator, Drop-In Center, Chandigarh.

Sessions on Group Discussion / Initiatives, Issues and problem Sharing and Role Play were conducted by Anil Kumar, Member CNP+. Panel Discussions and Different Questionnaires were in detail discussed in interactive sessions by Ms. Meena Vij, Founder and Former President, Chandigarh Network of People Living With HIV.

Throughout the workshop the speakers discussed in detail with the participants the skills required to be good peer educators. They were advised how to form network in their areas and villages, and how the members could derive the maximum benefit from them. The participants were also empowered on different health related issues and different guidelines and home remedies were discussed with them in length to cope-up with stress, maintain their activity of daily life and whom to contact during illness.

The workshop was concluded by Ms. Meena Vij with hope that the public can show love to PLHA and not only allow them to rebuild their lives in the community but work upon GIPA.

“Together we stand’, to symbolise unity in challenging HIV/AIDS stigma. Stigma, ‘a powerful and discrediting social label that radically changes the way individuals view themselves and are viewed as persons’, can be felt (internal stigma), leading to an unwillingness to seek help and access resources, or enacted (external stigma), leading to discrimination on the basis of HIV status or association with someone who is living with HIV/AIDS.

Because stigma has an impact on prevention and care it is important to address it directly. However, stigma-mitigation practice has not been well informed by theory and research. An urgent need was identified for indicators of stigma, which can be used to develop interventions and measure their success.

Drop-In Center - CNP+ Project (Funded by SACS, Chandigarh under NACO Scheme) thus aims to pave the way for a stigma-mitigation process by developing well-researched indicators of HIV/AIDS stigma and discrimination. The project has focused on three key areas essential to HIV/AIDS:

Faith-based organisations and communities as important sources of support to people living with HIV/AIDS (PLHAs)
National government departments as workplaces committed to dealing with stigma through good policy and practice
The relationship between PLHAs and the media as an example of how empowered individuals can impact positively on perceptions and attitudes towards HIV/AIDS.

A comprehensive review, two consultative workshops and the establishment of reference groups in the focus areas of the project ensured that a diverse range of opinions and experiences were reflected.

The project consists of six aspects:

A literature review to provide a theoretical understanding of stigma
The development of indicators of internal and external stigma through this fieldwork and in consultation with experts in the field
The documentation of promising practices which mitigate HIV/AIDS stigma
A qualitative study of stigma experiences and perspectives through focus-group discussions and key-informant interviews across the community.
A media scan to contextualise and locate the fieldwork in a particular time and place
The development of guidelines to assist those who wish to develop interventions to impact positively on HIV/AIDS stigma.

It is very important to address HIV/AIDS stigma in order to improve the quality of the lives of people living with HIV/AIDS and to address prevention effectively. Powerful negative metaphors related to HIV/AIDS reinforce stigma and create a sense of otherness. Bothering occurs when blame and shame are assigned to people living with HIV/AIDS. This sets a moral tone that contributes towards people conceptualizing PLHAs as different, and guides thinking toward a ‘them’ and ‘us’ division. When this division occurs, a person is less likely to identify with the other group, in this case PLHAs. For example, metaphors those refer to HIV/AIDS as a plague – and PLHAs by association as the carriers – present PLHAs in a dehumanizing and alien light. The consequence of bothering is that certain groups may feel that they are immune to the risk of HIV infection. Stigma also influences how we respond to the HIV/AIDS epidemic. Instead of using resources and energy effectively to provide a caring, compassionate response, PLHAs, people representing risk groups, and people affected by HIV/AIDS have become targets for blame and punishment. This has only heightened their vulnerability to HIV/AIDS and pushed them into a vicious cycle of stigmatization and discrimination.

As part of the qualitative exploration of HIV/AIDS stigma, collected many personal experiences of people living with HIV/AIDS who have started to heal emotionally because of supportive and non-stigmatizing environments. PLHAs mentioned particularly the value of proper pre and post test HIV counseling, the provision of factual information about the virus and opportunistic diseases, and counseling about disclosure. PLHAs highlighted the importance of acceptance by their family, faith group, friends and colleagues in helping them to overcome the initial shock of discovering their status. Acceptance also helped them to accept their status and to live positively. Where PLHAs have not been able to find such support, they have also been more likely to internalize societal stigma.

These guidelines highlight the importance of such an accepting environment – not only for the healing of PLHAs, but also for creating an environment that allows open discussion and disclosure. It also reduces the sense that HIV/AIDS is somebody else’s problem.

These guidelines were developed to provide leaders of PLHA organizations with user-friendly recommendations on training for PLHAs, to strengthen their media advocacy roles in HIV/AIDS stigma-mitigation. Additional sets of guidelines are available for the faith and national government workplace sectors. The guidelines are not exhaustive and should be read in conjunction with other guideline documents on HIV/AIDS and stigma within the three sectors.

The purpose of these guidelines is:

To share the findings of in a user-friendly way
To provide recommendations on training for PLHAs to strengthen their media advocacy roles in stigma mitigation.

“Acceptance is the key to many doors. And acceptance is probably one of the keys to the stigma door too.” Ms. Pooja Thakur, President CNP+

The National AIDS Control Programme Phase III aims to go beyond the high risk behavior groups covered by Targeted Interventions. This would entail extension of interventions to populations.

Objectives of the Social Assessment

· To undertake a comprehensive Social Assessment that documents the prevalence and risk of HIV/AIDS,
· To understand their levels of knowledge, social and behavioural causes and consequences of HIV/AIDS (including stigma),
· To assess current strategies used for PDTC of HIV/AIDS in order to ensure appropriate programme design and implementation to reduce the spread of HIV/AIDS and improve its management.
· To provide information for pre-project stakeholder consultations and to design continuous stakeholder consultations in the programme.

Assessment Methodology

· Review of literature
· Primary assessment among tribal population; and programme implementers and service providers
· Relevant literature survey
· Analysis of the various policy documents
· Analysis of NACO Project documents and assessment reports available

Basic Information

The following are the salient findings regarding behavioral and other practices that are relevant to the programme planners:

· Low awareness and knowledge regarding STI/HIV/AIDS
· Widely varying sexual practices (high level of pre-marital and extra marital sexual practices) and contact with external high risk population make them vulnerable
· Specific communication strategy designed to suit the needs and culture of the target group in local dialects would be necessary. The choice of medium for communication would also be critical. Folk media, Inter Personal Communication and messages through influencer groups could be main choices
· Non-availability and/or lack of access to health care facilities were one of the main factors discouraging health seeking. Trust in faith healers and non qualified private practitioners and easy accessibility made them rely on these sources for seeking treatments for illnesses. Role of such providers in referral needs to be reckoned in programme design
· Gender bias towards males for health care seeking needs to be addressed
· Knowledge regarding STI and symptoms are low and misconceptions that exist
exasperates this situation
· High level of stigma associated with STI and HIV/AIDS is a challenge that needs to be addressed
· Youth are emerging as a highly vulnerable group in these areas

Policy Environment

The following some of the policies have been examined and analyzed for their implications on the Prevention-
· National HIV/AIDS Prevention and Control Policy
· National Health Policy 2002
· National Population Policy 2002
· National Rural Health Mission-Vision Document
· National HIV/AIDS Bill
· Manipur State Level Policy on HIV/AIDS
· The National RCH and RNTCP Program Documents

Institutional Issues

· A special function at the National and State level needs to be created and positioned to deal with issues relating to policies, coverage and implementation of interventions among the tribal population and other socially disadvantaged sections of the population who are vulnerable to HIV.
· The district level planning envisaged during NACP III needs to identify the vulnerable and socially disadvantaged populations as well as the tribal population that need to be covered in the different districts of each state.
· The Governing Board and Executive Committee of each SACS can be expanded to include members from the Social Welfare Board and Tribal Development departments for better understanding of the requirements of the populations and appropriately plan for intervention and services in those areas.
· The convergence with RCH II especially in the areas of Tribal Plan, Rural, Urban Poor and the approaches to mainstreaming gender and equity can be attempted in order that the service availability and service provision can be linked. The policy and goals can be studied and the same be tied up with in the state PIP for serving the tribal population and other marginalized and socially excluded population.
· Behavioral studies using a ethnographic approach need to be carried out in different tribal and rural belts to better understand the risk and vulnerability factors of the specific population in order to design programme and interventions for these populations.
· Capacity building of the NACO and SACS staff on the Social Development issues, gender, equity and Social Exclusion needs to be provided in order that the staff are sensitized and appreciate the necessity to include and mainstream such aspects into the programme.
· District level structures need to be created for planning the district level HIV/AIDS intervention with evidence for planning and capacity needs to be built on different aspects of programme planning and management

Recommendations

· Review of laws and policies and make them specific to tribal population
· Policy on specific interventions to be taken up with the tribal population and the necessity for the state and the district plans to reflect these over the initial period of NACP III
· Provision of clear budgetary allocation for working with the tribal population to emphasize the importance
· Convergence as a strategy with other programmes needs to be worked out in order that cost-effective interventions can be initiated
· Introducing a function of social development within NACO and train and sensitize staff of NACO on these issues in order that it can be mainstreamed
· Inter-sector collaboration with ministries such as Environment & Forests, Tribal
Development, Social Welfare and Tourism to arrive at certain common minimum
programme
· Constitute a working group at the national level for identifying strategies to work with the tribal population
· Initiate mapping exercise at the state level in order to prioritize
· Expand the Governing Body and The Executive Committee at the state levels to include representatives of tribal development and social welfare
· Develop communication material in the local dialects and languages with a clear focus on changes that are intended to be brought about
· In states strengthen the NGO advisor with a support unit to effectively handle such Interventions
· Develop appropriate structure at the district levels to implement HIV/AIDS programmes and also plan for priorities at the district level
· To have mechanisms to generate the disaggregated information regarding tribal population at the district level at different service provision centers
· Research studies to establish the relationship between migration and tribal risk factors needs to be initiated for evidence to plan for these
· Initiation of training programmes for service providers to sensitize them to issues of tribal population in order that their attitudes are conducive to the tribal population
· Carry out a detailed assessment of the private sector organizations that are working in the tribal areas and plan for their involvement through consultations
After understanding NACP-III insight on HIV/AIDS and Human Rights are very important. For many years since the advent of HIV/AIDS, various intergovernmental, non-governmental and governmental bodies have recognized the important connection between the protection of human rights and effective responses to HIV/AIDS.
The most valuable document on Consultation on HIV/AIDS and Human Rights (Geneva, 23-25 September 1996) Report of the Secretary-General which advocates Public health interests do not conflict with human rights. On the contrary, it has been recognized that when human rights are protected, less people become infected and those living with HIV/AIDS and their families can better cope with HIV/AIDS; A rights-based, effective response to the HIV/AIDS epidemic involves establishing appropriate governmental institutional responsibilities, implementing law reform and support services and promoting a supportive environment for groups vulnerable to HIV/AIDS and for those living with HIV/AIDS. According to it there are many steps that States can take to protect HIV-related human rights and to achieve public health goals. The 12 Guidelines elaborated by the Consultation for States to implement an effective, rights-based response are summarized below.

Guideline 1: States should establish an effective national framework for their response to HIV/AIDS which ensures a coordinated, participatory, transparent and accountable approach, integrating HIV/AIDS policy and programme responsibilities across all branches of Government.
Guideline 2: States should ensure, through political and financial support, that community consultation occurs in all phases of HIV/AIDS policy design, programme implementation and evaluation and that community organizations are enabled to carry out their activities, including in the field of ethics, law and human rights, effectively.
Guideline 3: States should review and reform public health laws to ensure that they adequately address public health issues raised by HIV/AIDS, that their provisions applicable to casually transmitted diseases are not inappropriately applied to HIV/AIDS and that they are consistent with international human rights obligations.
Guideline 4: States should review and reform criminal laws and correctional systems to ensure that they are consistent with international human rights obligations and are not misused in the context of HIV/AIDS or targeted against vulnerable groups.
Guideline 5: States should enact or strengthen anti-discrimination and other protective laws that protect vulnerable groups, people living with HIV/AIDS and people with disabilities from discrimination in both the public and private sectors, ensure privacy and confidentiality and ethics in research involving human subjects, emphasize education and conciliation, and provide for speedy and effective administrative and civil remedies.
Guideline 6: States should enact legislation to provide for the regulation of HIV-related goods, services and information, so as to ensure widespread availability of qualitative prevention measures and services, adequate HIV prevention and care information and safe and effective medication at an affordable price.
Guideline 7: States should implement and support legal support services that will educate people affected by HIV/AIDS about their rights, provide free legal services to enforce those rights, develop expertise on HIV-related legal issues and utilize means of protection in addition to the courts, such as offices of ministries of justice, ombudspersons, health complaint units and human rights commissions.
Guideline 8: States, in collaboration with and through the community, should promote a supportive and enabling environment for women, children and other vulnerable groups by addressing underlying prejudices and inequalities through community dialogue, specially designed social and health services and support to community groups.
Guideline 9: States should promote the wide and ongoing distribution of creative education, training and media programmes explicitly designed to change attitudes of discrimination and stigmatization associated with HIV/AIDS to understanding and acceptance.
Guideline 10: States should ensure that government and private sectors develop codes of conduct regarding HIV/AIDS issues that translate human rights principles into codes of professional responsibility and practice, with accompanying mechanisms to implement and enforce these codes.
Guideline 11: States should ensure monitoring and enforcement mechanisms to guarantee the protection of HIV-related human rights, including those of people living with HIV/AIDS, their families and communities.
Guideline 12: States should cooperate through all relevant programmes and agencies of the United Nations system, including UNAIDS, to share knowledge and experience concerning HIV-related human rights issues and should ensure effective mechanisms to protect human rights in the context of HIV/AIDS at international level.

GUIDELINES ON HIV/AIDS AND HUMAN RIGHTS

Preamble

This document contains guidelines adopted at the Second International Consultation on HIV/AIDS and Human Rights, held in Geneva from 23 to 25 September 1996, to assist States in creating a positive, rights-based response to HIV/AIDS that is effective in reducing the transmission and impact of HIV/AIDS and respectful of human rights and fundamental freedoms.

The elaboration of such guidelines was first considered by the 1989 International Consultation on AIDS and Human Rights, organized jointly by the United Nations Centre for Human Rights and the World Health Organization. (1) The United Nations Commission on Human Rights and its Sub-Commission on Prevention of Discrimination and Protection of Minorities have repeatedly reiterated the need for guidelines. (2) Increasingly, the international community has recognized the need for elaborating further how existing human rights principles apply in the context of HIV/AIDS and for providing examples of concrete activities to be undertaken by States to protect human rights and public health in the context of HIV/AIDS.
The purpose of these Guidelines is to translate international human rights norms into practical observance in the context of HIV/AIDS. To this end, the Guidelines consist of two parts: first, the human rights principles underlying a positive response to HIV/AIDS and second, action-oriented measures to be employed by Governments in the areas of law, administrative policy and practice that will protect human rights and achieve HIV-related public health goals.
The Guidelines recognize that States bring to the HIV/AIDS epidemic different economic, social and cultural values, traditions and practices - a diversity which should be celebrated as a rich resource for an effective response to HIV/AIDS. In order to benefit from this diversity, a process of participatory consultation and cooperation was undertaken in the drafting of the Guidelines, so that the Guidelines reflect the experience of people affected by the epidemic, address relevant needs and incorporate regional perspectives. Furthermore, the Guidelines reaffirm that diverse responses can and should be designed within the context of universally recognized international human rights standards.

It is intended that the principal users of the Guidelines will be States, in the persons of legislators and government policy-makers, including officials involved in national AIDS programmes and relevant departments and ministries, such as health, foreign affairs, justice, interior, employment, welfare and education. Other users who will benefit from the Guidelines include intergovernmental organizations (IGOs), non-governmental organizations (NGOs), networks of persons living with HIV/AIDS (PLHAs), community-based organizations (CBOs), networks on ethics, law, human rights and HIV and AIDS service organizations (ASOs). The broadest possible audience of users of the Guidelines will maximize their impact and make their content a reality.

The Guidelines address many difficult and complex issues, some of which may or may not be relevant to the situation in a particular country. For these reasons, it is essential that the Guidelines are taken by critical actors at the national and community level and considered in a process of dialogue involving a broad spectrum of those most directly affected by the issues addressed in the Guidelines. Such a consultative process will enable Governments and communities to consider how the Guidelines are specifically relevant in their country; assess priority issues presented by the Guidelines and devise effective ways to implement the Guidelines in their respective contexts.

In implementing the Guidelines, it should be borne in mind that achieving international cooperation in solving problems of an economic, social, cultural or humanitarian character and promoting and encouraging respect for human rights and for fundamental freedoms for all, is one of the principal objectives of the United Nations. In this sense, international cooperation, including financial and technical support, is a duty of States in the context of the HIV/AIDS epidemic and industrialized countries are encouraged to act in a spirit of solidarity in assisting developing countries to meet the challenges of implementing the Guidelines.
Among the human rights principles relevant to HIV/AIDS are, inter alia:
· The right to non-discrimination, equal protection and equality before the law
· The right to life
· The right to the highest attainable standard of physical and mental health
· The right to liberty and security of person
· The right to freedom of movement
· The right to seek and enjoy asylum
· The right to privacy
· The right to freedom of opinion and expression and the right to freely receive and impart information
· The right to freedom of association
· The right to work
· The right to marry and found a family
· The right to equal access to education
· The right to an adequate standard of living
· The right to social security, assistance and welfare
· The right to share in scientific advancement and its benefits
· The right to participate in public and cultural life
· The right to be free from torture and cruel, inhuman or degrading treatment or punishment
· The rights of women and children.

The application of specific human rights in the context of the HIV/AIDS epidemic
Examples of the application of specific human rights to HIV/AIDS are illustrated below. These rights should not be considered in isolation but as interdependent rights supporting the Guidelines elaborated in this document. In the application of these rights, the significance of national and regional particularities and various historical, cultural and religious backgrounds must be remembered. It remains the duty of States, however, to promote and protect all human rights within their cultural contexts.
1. Non-discrimination and equality before the law
2. Human rights of women
3. Human rights of children
4. Right to marry and found a family and protection of the family
5. Right to privacy
6. Right to enjoy the benefits of scientific progress and its applications
7. Right to liberty of movement
8. Right to seek and enjoy asylum
9. Right to liberty and security of person
10. Right to education
11. Freedom of expression and information
12. Freedom of assembly and association
13. Right to participation in political and cultural life
14. Right to the highest attainable standard of physical and mental health
15. Right to an adequate standard of living and social security services
16. Right to work
17. Freedom from cruel, inhuman or degrading treatment or punishment

After understanding these we must understand the following issues and work accordingly for betterment:
Institutional responsibilities and processes:
States should establish an effective national framework for their response to HIV/AIDS which ensures a coordinated, participatory, transparent and accountable approach, integrating HIV/AIDS policy and programme responsibilities, across all branches of Government.
Depending upon existing institutions, the level of the epidemic and institutional cultures, as well as the need to avoid overlapping of responsibilities, the following responses should be considered:
· Education
· Law and justice, including police and corrective services
· Science and research
· Employment and public service
· Welfare, social security and housing
· Immigration, indigenous populations, foreign affairs and development cooperation
· Health
· Treasury and finance
· Defence, including armed services
Supporting community partnership:
States should ensure, through political and financial support, that community consultation occurs in all phases of HIV/AIDS policy design, programme implementation and evaluation and that community organizations are enabled to carry out their activities, including in the fields of ethics, law and human rights, effectively.
Public health legislation:
States should review and reform public health legislation to ensure that they adequately address the public health issues raised by HIV/AIDS, that their provisions applicable to casually transmitted diseases are not inappropriately applied to HIV/AIDS and that they are consistent with international human rights obligations.
· The HIV-positive person in question has been thoroughly counselled
· Counselling of the HIV-positive person has failed to achieve appropriate behavioural changes
· The HIV-positive person has refused to notify, or consent to the notification of his/her partner(s)
· A real risk of HIV transmission to the partner(s) exists
· The HIV-positive person is given reasonable advance notice
· The identity of the HIV-positive person is concealed from the partner(s), if this is practically possible
· Follow-up is provided to ensure support to those involved, as necessary.
Criminal laws and correctional systems:
States should review and reform criminal laws and correctional systems to ensure that they are consistent with international human rights obligations and are not misused in the context of HIV/AIDS or targeted against vulnerable groups.
· The authorization or legalization and promotion of needle and syringe exchange programmes;
· The repeal of laws criminalizing the possession, distribution and dispensing of needles and syringes.
Anti-discrimination and protective laws:
States should enact or strengthen anti-discrimination and other protective laws that protect vulnerable groups, people living with HIV/AIDS and people with disabilities from discrimination in both the public and private sectors, that will ensure privacy and confidentiality and ethics in research involving human subjects, emphasize education and conciliation and provide for speedy and effective administrative and civil remedies.
A national policy on HIV/AIDS and the workplace agreed upon in a tripartite body
Freedom from HIV screening for employment, promotion, training or benefits
Confidentiality regarding all medical information, including HIV/AIDS status
Employment security for workers living with HIV until they are no longer able to work, including reasonable alternative working arrangements
Defined safe practices for first aid and adequately equipped first-aid kits
Protection for social security and other benefits for workers living with HIV, including life insurance, pension, health insurance, termination and death benefits
Adequate health care accessible in or near the workplace
Adequate supplies of condoms available free to workers at the workplace
Workers' participation in decision-making on workplace issues related to HIV/AIDS
Access to information and education programmes on HIV/AIDS, as well as to relevant counselling and appropriate referral
Protection from stigmatization and discrimination by colleagues, unions, employers and clients
Appropriate inclusion in workers' compensation legislation of the occupational transmission of HIV (e.g. needle stick injuries), addressing such matters as the long latency period of infection, testing, counselling and confidentiality.
Non-discriminatory selection of participants, e.g. women, children, minorities
Informed consent
Confidentiality of personal information
Equitable access to information and benefits emanating from research
Counselling, protection from discrimination, health and support services provided during and after participation
The establishment of local and/or national ethical review committees to ensure independent and ongoing ethical review, with participation by members of the community affected, of the research project
Approval for use of safe and efficacious pharmaceuticals, vaccines and medical devices.
Regulation of goods, services and information:
States should enact legislation to provide for the regulation of HIV-related goods, services and information, so as to ensure widespread availability of qualitative prevention measures and services, adequate HIV prevention and care information and safe and effective medication at an affordable price.
Legal support services:
States should implement and support legal support services that will educate people affected by HIV/AIDS about their rights, provide free legal services to enforce those rights, develop expertise on HIV-related legal issues and utilize means of protection in addition to the courts, such as offices of Ministries of Justice, ombudspersons, health complaint units and human rights commissions.
Women, children and other vulnerable groups:
States should, in collaboration with and through the community, promote a supportive and enabling environment for women, children and other vulnerable groups by addressing underlying prejudices and inequalities through community dialogue, specially designed social and health services and support to community groups.
· The role of women at home and in public life
· The sexual and reproductive rights of women and men, including women's ability to negotiate safer sex and make reproductive choices
· Strategies for increasing educational and economic opportunities for women
· Sensitizing service deliverers and improving health care and social support services for women
· The impact of religious and cultural traditions on women.
Changing discriminatory attitudes through education, training and the media
States should promote the wide and ongoing distribution of creative education, training and media programmes explicitly designed to change attitudes of discrimination and stigmatization associated with HIV/AIDS to understanding and acceptance.
Development of public and private sector standards and mechanisms for implementing these standards
States should ensure that Government and the private sector develop codes of conduct regarding HIV/AIDS issues that translate human rights principles into codes of professional responsibility and practice, with accompanying mechanisms to implement and enforce these codes.
State monitoring and enforcement of human rights:
States should ensure monitoring and enforcement mechanisms to guarantee HIV-related human rights, including those of people living with HIV/AIDS, their families and communities.
International cooperation:
States should cooperate through all relevant programmes and agencies of the United Nations system, including UNAIDS, to share knowledge and experience concerning HIV-related human rights issues, and should ensure effective mechanisms to protect human rights in the context of HIV/AIDS at the international level.
· Support translation of the Guidelines into national and minority languages
· Create a widely accessible mechanism for communication and coordination for sharing information on the Guidelines and HIV-related human rights
· Support the development of a resource directory on international declarations/treaties, as well as policy statements and reports on HIV/AIDS and human rights, to strengthen support for the implementation of the Guidelines
· Support multicultural education and advocacy projects on HIV/AIDS and human rights, including educating human rights groups on HIV/AIDS and educating HIV/AIDS and vulnerable groups on human rights issues, and strategies for monitoring and protecting human rights in the context of HIV/AIDS, using the Guidelines as an educational tool
· Support the creation of a mechanism to allow existing human rights organizations and HIV/AIDS organizations to work together strategically to promote and protect the human rights of people living with HIV/AIDS and those vulnerable to infection, including through implementation of the Guidelines
· Support the creation of a mechanism to monitor and publicize human rights abuses in the context of HIV/AIDS
· Support the development of a mechanism to mobilize grass-roots responses to HIV-related human rights and implementation of the Guidelines, including exchange programmes and training among different communities, both within and across regions
· Advocate that religious and traditional leaders take up HIV-related human rights concerns and become part of the implementation of the Guidelines
· Support the development of a manual that would assist human rights and AIDS service organizations in advocating for the implementation of the Guidelines
· Support the identification and funding of NGOs and ASOs at country level to coordinate a national NGO response to promote the Guidelines
· Support, through technical and financial assistance, national and regional NGO networking initiatives on ethics, law and human rights to enable them to disseminate the Guidelines and advocate for their implementation
For more details
http://www.hri.ca/fortherecord1997/documentation/commission/e-cn4-1997-37.htm#CONTENTS#CONTENTS
The acronym “GIPA” was first orated during the preparatory meetings for the Paris AIDS Summit, held in December 1994. GIPA stands for the Greater Involvement of People Living with HIV/AIDS coming directly from the text of the Declaration[1]. The text suggests an initiative to strengthen the capacity of people living with HIV/AIDS (PLHA), networks of PLHA and community based organisations to participate fully at all - national, regional and global - levels, in particular stimulating the creation of supportive political, legal and social environments.

In particular it described the 1983 Denver Principles which are the first documented words of PLHA seeking greater respect and involvement. The exact principles are as follows:

· A refusal to be “victims”.
· A request for support from all people.
· A plea against stigma and discrimination.
· A call to arms of all people with HIV to choose:
ü To be involved at all levels of decision-making.
ü To be included in all AIDS Forums.
ü To be responsible for their own sexual health and to inform their partners of their HIV status.
The Denver Principles further to identify and demanded the following five human rights:
· A full and satisfying sexual and emotional life.
· Quality medical treatment and social service provision.
· Full explanations of medical procedures and risks and the right to choose or refuse treatment.
· Privacy and confidentiality of medical records and disclosure.
· To die and live in dignity.

The specific objectives were as follows:

To generate an operational understanding of the GIPA principle.
To share experiences of various mechanisms of enhancing GIPA.
To explore opportunities and obstacles related to the implementation of GIPA activities.
To explore future perspectives and mechanisms for enhancing GIPA
PLAN OF ACTION
The overall Plan of Action is outlined in the section on Objective 4. Beyond these key strategic areas of Stigma and Discrimination; Communication and Information Sharing; GIPA at Institutional and Policy Levels; Empowerment of PLHA and Groups of PLHA and Advocacy, a few additional areas to focus action on are listed below.

· Survival: The strong will to survive leads to people being involved.
· Success: Successes that have been seen on the ground encourage people to go further.
· Self-determination.
· Networking through the internet and other electronic means.
· Donors have the power to influence policy and programmes and they should try to impact positively on national level programmes through encouragement of GIPA.
· The opportunity to address the environment for safe disclosure through GIPA must not be missed.
· UNAIDS, through GIPA, should include PLHA in high level press briefings and meetings with Presidents and other national level leaders.
Declaration of the Paris AIDS Summit - Important to understand the GIPA visit: http://www.unaids.org/whatsnew/conferences/summit/index.html
PLHA and their Children shared their experiences and concerns on issues that ranged from social isolation, being orphaned, denial of services, access to education, emotional distress and their dreams and aspirations for the future.

The group recognized that Treatment, care and support were addressed comprehensively and key activities and indicators developed in programs providing care, support for children infected and affected with HIV and AIDS ensures improving the quality of lives. While the document deals with most of the key components relating to children affected by AIDS, it is suggested the following issues can be incorporated to make it comprehensively responsive to the needs of PLHA and their family members while collecting different data for

Advocacy paper for PLHIV issues
http://www.solutionexchange-un.net.in/aids/resource/res-01-250607-02.doc http://www.solutionexchange-un.net.in/aids/resource/res-01-250607-01.doc

The guideline was developed in several phases:

First, an analysis was conducted of the findings of focus-groups and key informant interviews with an overall focus on enabling factors for stigmamitigation, and the relationship between PLHAs and the media.
Next, there was broad consultation with reference-group members and participants in a consultative workshop. All participants involved in these processes had a wealth of HIV/AIDS knowledge and experience. Participants were representatives of the three chosen sectors – the workplace sector, faith organisations, and PLHAs with media experience.
The third phase drew on the experience of PLHAs who had interacted with the media. In different focus groups were held and involving participants. An effort was made to have gender-specific and race-specific groups, although this was not always possible.
A draft guideline document was developed and the document was circulated amongst selected key HIV/AIDS experts for comment. Their feedback is reflected in this final set of guidelines.

The workshop and other interactions advocate the following components for effective implementation of NACP-III:
policy
leadership
interventions
partnership.
follow-up

Interactions between PLHAs and the media

According to the focus- group participants who were living with HIV/ AIDS, the media lack a sufficient number of empowered PLHA voices. PLHAs felt that they should be consulted to assist with awareness messages and storylines for television and radio programmes. PLHA participants in the focus - groups believed that the media perpetuate certain perceptions of

“If they hear it from the horse’s mouth, then they listen. It’s much better than to just read a story. I think that’s where the media can improve – they [television media] all have the opportunities to do that.” Ranbir Singh, Vice President, CNP+ (Siti Cable Chandigarh – AIDS Day, 2005)

HIV/AIDS and Label PLHAs.

Specifically, PLHAs were represented as sick and dying, ‘immoral’ and/or as only women. Some PLHA focus-group participants had had empowering interactions with the media, while others had had disempowering experiences. According to some PLHAs, media practitioners have selected only aspects of their stories in order to make their reports more newsworthy, or to make the story fit into their perspectives. Most PLHAs mentioned that they were asked inappropriate questions, such as:

• “Who infected you?”
• “Since when have you been positive?”
• “Are you on ARV?”
• “What about your Children and who is caring them?”
• “What was your reaction when you came to know about your HIV status?”
• “Since when have you been positive?”
• “Have you been sleeping around?”
• “Does your partner know that you are HIV positive?”
• “How does it fees when you sleep with someone?”

Recommendations that emerged from the Consultation of PLHA, Law and Media for Obtaining Positive Outcome of NACP-III for Sustainable Development of the Community – Chandigarh are following;

Capacity building and involve PLHAs for effective implementation, monitoring and improvement of NACP-III at organizational level:

Definitions of Core Groups, Bridge, Status etc.,
Develop strategy for enabling environment and effecting sustained behaviour change.
Linkage with BCC, STI, Condoms, Migration trafficking and enhancing rural.
Outreach including Slum population
Develop strategies to empower target communities:
Emerging issues of IDUs.
Sub group for MSMs
Design strategies for convergence and sustainability of interventions.
Convergence between social sectors, Health and Development.
Technical assistance, Capacity Building to NGO, SACS
Sub group on Monitoring and Evaluation of Targeted Interventions
Enabling Environment Sub group
Community Mobilization and Empowerment
Mainstreaming and Partnerships
Human Rights and Greater Involvement of People Living with HIV and AIDS
Surveillance
Research
Programme Management
Resource Mobilization, Planning and Resource Management
Programme Organization
Coordination and Institutional Arrangements
Decentralization
Monitoring, Evaluation and Implementation Tracking
Involvement at all levels

Involve PLHAs in the media:

People living with HIV/AIDS should be involved in the media to a greater extent. PLHAs have unique experiences and expertise, which could be used as a resource. By involving PLHAs, credibility can be given to HIV/AIDS programmes and reporting.

PLHAs could also be effective spokespersons for stigma-mitigation. The principle of the Greater Involvement of People living with HIV/AIDS commonly referred to as the GIPA principle, encourages organisations to involve PLHAs in addressing the pandemic and so enable PLHAs to act as HIV/AIDS advocates for positive living.

“It is high time that our voices are heard. Let us not have other people telling us what they think should happen to a person who is living with HIV when we are here and know what it is like.” Narayan Dass, Founder and Former Coordinator, Kiran (Knowledge for Information, Rights, Advocacy and Network) Help Line, Chandigarh

Specifically, PLHAs could be involved in the:

• Development of guidelines for media practitioners
• Development of television and radio programmes that are HIV/AIDS stigma-sensitive
• Development of HIV/AIDS educational materials that are HIV/AIDS stigma-sensitive
• Training of media workers on HIV/AIDS and stigma-related issues
• Monitoring of the codes of conduct.

Although HIV/AIDS affects some groups disproportionately because of preexisting social inequalities, recognition of this fact should not be at the cost of stigmatizing such groups and creating the perception that HIV/AIDS only affects these groups, with others perceived as immune to the disease. The media may be able to show that HIV/AIDS affects us all by ensuring a broader representation of PLHAs in terms of demographics such as race, gender, age and geographic location.

Empower PLHAs to interact with the media in an assertive manner

In order for PLHAs to become more actively involved in media advocacy to reduce stigma, effort needs to be made to build the capacity of PLHAs. It is suggested that the training of PLHAs include:
• Raising awareness of PLHAs’ rights
• Improving awareness of good practices for media interacting with
PLHAs, including codes of conduct
• Developing awareness of good media practices for representing
PLHAs – this should include using empowering language and images
• Enhancing awareness of possibilities for redress
• Developing skills for good communication and for sustaining good relationships with the media
• Developing skills in effective public disclosure of HIV status
• Creating a supportive environment among PLHAs involved in working with the media
• Improving skills for handling; leading questions, sensitive questions and difficult questions
• Sensitizing to issues of stigma
• Consent regarding the implications of working with the media. Participating PLHAs gave this advice to PLHAs who intend to interact with the media:
• PLHAs need to first come to terms with their HIV-positive status and past experiences.
• PLHAs need to be prepared for possible stigmatisation and discrimination, which may also affect those related to or associated with the PLHA.
• PLHAs need to be prepared for possible shock reactions of their family and friends in response to public disclosure.
• PLHAs need to be assertive when interacting with media practitioners to ensure that their story is told in the way they intend it to be.

Advocate that media regulatory bodies accept ethical guidelines

PLHA organisations could play an active role in advocating for the integration into the existing media ethics. Following manuals are milestones:

HIV/AIDS in News-Journalists as Catalysts published by UNDP India and Population Foundation of India in 2005.
HIV/AIDS- Media Manual India -2007 published by The EU-India Media Initiative on HIV/AIDS
Mass Communication in prevention and control of AIDS- Strategies for Adolescents written by Dr. Archana, Rakesh Singh, Department of Mass Communication, Panjab University, Chandigarh.

PLHA organisations could approach editors and sub-editors of different Media Houses and Development of guidelines for media for the advocacy in all the languages.

Produce HIV/AIDS stigma-mitigation messages

One way in which a PLHA organisation or others can mitigate stigma is through the production of stigma-mitigating messages using various forms of media – print, television and radio. Some positive examples of stigma-mitigation messages in the media include:
My Brother Nikhal and Phir Milaga are two very useful movies for masses to understated different issues related with HIV/AIDS.
Living Openly – a book highlighting the lives and experiences of People living with HIV/AIDS in India, commissioned by the NACO News letter.
Jina Kada Na Mani Har (Positive Living of HIV+ People) – A weekly article in Punjabi Tribune on Positive Speakers by Dr. Avnish Jolly from December 2006 to March 2007.
Soul City – television, radio and print media campaigns are researched to ensure that the information and messages they broadcast are sensitive and correct.
Bush Radio’s daily Positive Living show, which is presented by a PLHA
Steps for the Future (a range of short documentaries addressing HIV/ AIDS which have been aired on television, in cinemas and are available on video)
Beat It and Positive – both television programmes with a stigmamitigation message and presented by PLHAs

Address stigma with members of PLHA organizations

PLHA organisations can target stigma directly by addressing the topic with members and running training courses on the topic. Knowledge of the nature and effects of stigma can enable members of PLHA organisations to effectively address the topic with others in their own capacity.

Dr. Avnish Jolly