Kolkata Meeting on the HIV/AIDS Bill

On the 23 August, a meeting on the HIV/AIDS Bill was organized in Kolkata. Around 40 participants from the states of West Bengal and Orissa participated in the meeting. The major aim of the meeting was to reach out to HIV/AIDS organizations in eastern India in order to promote Bill advocacy in the region.

Welcome and the Objectives of the Meeting

The meeting was called to order by Raman Chawla, Advocacy Officer at Lawyers Collective HIV/AIDS Unit. After a round of introductions, he asked Pawan Dhall, the director of SAATHII, to give the welcome address and explain the objectives of the meeting. Pawan recalled SAATHII’s participation in the civil society consultations held in 2003 for the formulation of the HIV/AIDS Bill, and noted that the Bill could play a significant role in protecting the rights of HIV+ people and those groups which are most vulnerable. He noted that we are at a very important stage and stressed on the need to speed up the advocacy on the HIV/AIDS Bill.

Next, Raman introduced Tarit Chakrovarty of Bengal Network of Positive People (BNP+) to speak about the need for a law on HIV/AIDS. Tarit started by commenting that those with HIV know how closely stigma and discrimination are attached to a positive status. He spoke about the 4,500 members of BNP+, and said that many members share stories of facing stigma and discrimination in a variety of sectors. Tarit gave examples of discrimination in employment, at home, in education, and in receiving medical treatment and government pension schemes. He emphasized on the need to have a law on HIV to protect PLHAs from such discrimination. He ended by saying that it is the wish of BNP+ that the Bill gets passed quickly.

A Presentation by Anand Grover followed by a brief Question and Answers session

Then, Mr. Anand Grover, Director of Lawyers Collective HIV/AIDS Unit presented the salient features of the Bill.

This was followed by a brief question and answers session on the salient features of the Bill. Santosh from INP+ Orissa mentioned a case study in which an HIV+ individual suffered a minor accident and was denied treatment in the hospital because protective gear was not available at the hospital. Generally, since doctors in hospitals fear getting infected, they avoid seeing HIV+ patients. He asked whether this was a legitimate reason to refuse treatment. Anand replied that if there is not appropriate infrastructure, then it is not considered a form of discrimination. However, the government is obligated to provide all appropriate treatment resources, which includes resources to protect healthcare providers. He also mentioned that a provision about the right of healthcare workers to a safe working environment is included in the Bill, and that it is the obligation of the government to provide appropriate materials.

Jagadish Jana from Manas Bangla asked a question about the special provisions with respect to women and children in terms of the right to residence. Anand replied that both women and children are guaranteed a right to residence, but that the right of children only extends until the age of 18.

Shashikant from Action Aid wanted to know more about whether discrimination in the family or by neighbors was covered by the HIV/AIDS Bill. He asked whether these cases could be taken to court. He noted that social interactions are where the most protections against discrimination are needed. Another audience member asked whether discrimination in private healthcare institutions is covered in the Bill.

Anand said that the private sector is wholly covered by the Bill. He spoke about how for many private hospitals, land has been provided at a very cheap rate in order to promote the establishment of more healthcare institutions. However, there are few safeguards to ensure that these hospitals fulfill the obligations that they are meant to. Regarding the family sphere, the prohibition of discrimination is extremely tricky, since it is not clear how much the government can interfere in this setting, and opponents of the Bill would be quick to say that the Bill aims to destroy the family setting.

Sashmita Padhi from Orissa AIDS State forum asked whether the importance given to confidentiality risks creating a loophole by which people who want to spread HIV could achieve this goal, and also inquired as to whether transmission is criminalized in the Bill.

Anand responded with two points. First, he countered the idea that confidentiality furthers discrimination. He noted that though we want to normalize HIV and have this medical condition is treated as any other, discrimination is a large part of the problem and that individuals will not be motivated to come forward for a stigmatized condition if they do not feel that their privacy is ensured. He mentioned the practice of provider-initiated testing and counseling being utilized in other countries, such as South Africa and asked whether it is possible to reduce stigma solely by providing treatment. He said the answer is that to some extent it is possible, but that high levels of stigma preclude the option of mandatory or provider-initiated testing. It has to be up to an individual to make the decision of being public about his/her status, but that the law must provide protection against existing stigma. He noted that this is particularly important in the case of minorities, as the law becomes more important to the minority, as their rights are most often compromised.

Jagadish Jana mentioned CD4 testing and asked whether its provision was guaranteed under the Bill, further asserting that the current system utilizes quotas to provide testing to those that need it.

Anand said that the Bill holds the government to providing all HIV-related care and treatment free of cost, without the requirement of recommendations or quotas. The reasons for this are that using a system of recommendations risks breaching confidentiality when individuals have to give proof of status. It also spawns corruption: treatment should be free for everyone, regardless of how much money they have. Anand noted that the government may not want to provide viral load testing free of cost, but that this is a recommendation of the Bill. He also said that hospitals discriminate out of habit, and that they must be sensitized and brought into the right-to-health movement, which takes time. Regarding ART drugs, regimens must be examined. If infrastructure is not in place, there will be larger problems.

Anand concluded by noting that the government cannot arbitrarily make decisions on what it thinks is best for the people, but that it must incorporate consultations in order to create evidence-based policies.

Past and Present Bill Advocacy in West Bengal: A Presentation by Debashish Sarkar, SRISTY

Raman began this session by mentioning that since the Bill has remained pending in the ministry, a great deal of grass-roots advocacy has occurred. A review of advocacy in West Bengal was presented by Debashish Sarkar from SRISTY, with additions by Tarit and Pawan.

Debasish began by speaking about advocacy in August 2007 in the suburbs of Kolkata, when Lawyers Collective took a session on the draft HIV/AIDS Bill. Through this programme, many people gained awareness. Another similar programme was also done with MLAs later in 2007. A programme done with positive people networks increased awareness about ways that networks could advocate to government about the importance of passing the Bill.

In August 2007, there was a meeting held with the Family Health and Welfare Department, and a meeting with the standing committee of this department was planned. This meeting will be held in September 2008. This network requests all groups doing advocacy work in the region to speak with their local MLAs, so that inputs from these talks can be brought up in the upcoming meeting. Until now, there have already been conversations with 8 MLAs.

Raman then asked other representatives from West Bengal about adding their own advocacy ventures and experiences. Tarit telling about the work done by BNP+ told that first a signature campaign was done by Indian Network for People Living with HIV/AIDS (INP+) and these signatures were submitted to the Prime Minister’s Office (PMO). There was also a big rally on the Bill organized in Lucknow. Pawan spoke about SAATHIIS advocacy on the access to medicines.

Past and Present Bill Advocacy in Orissa: A Presentation by Mithali Mohanty, SAATHII

Following these comments, representatives from Orissa were asked to share their experiences with HIV/AIDS Bill advocacy. Mithali Mohanty spoke on behalf of the Orissa. Groups. Mithali mentioned several forms of advocacy done, including a campaign with several different stakeholders. One event of this campaign was a press meet in Ganjam that brought together representatives of 22 districts. Another was an event done with PRA functionaries.

The campaign brings together a wide range of constituents, including NGOs, CBOs, public leaders and students. The students have been involved in a postcard campaign. Society Tackling AIDS through Rights (STAR), an initiative to fight AIDS-related stigma and discrimination, has many volunteers as part of its work. These volunteers were also a part of the signature campaign.

The ex-legislative assembly leader also mobilized as a speaker on our behalf. There was a publicity event in which sand artists built a sculpture to gain support for passing the HIV/AIDS Bill. This sculpture gave the message about how the passage of the Bill is necessary to save humanity. We also collected signatures at the beach where the sculpture was built as part of our on-going signature campaign.

Besides CBOs and NGOs, the rest of civil society has also played a strong role in advocacy as well. We had a discourse meeting organized by OSAF.

Shashikant from Action Aid mentioned that the collected signatures were sent to the Prime Minister’s Office, and that signatures continue to be collected, not only by their organization, but by organizational partners as well. Besides organizations, community members are also very involved, and a target of 1 lakh postcards (to be sent to the Health Minister, the Law Minister and the Prime Minister) has been set.

Past and Present Bill Advocacy by Lawyers Collective HIV/AIDS Unit (LCHAU): A Presentation by Raman Chawla, LCHAU

Raman began by noting that Lawyers Collective has been involved with advocacy at different levels, particularly with MPs. He said that LCHAU has met around 50 MPs in the last 1 year and briefed them about the Bill This has positive results with Indian Medical Parliamentarians Forum (IMPF) and Parliamentary Committee on HIV/AIDS taking up the advocacy on the Bill and writing to the law ministry to table the Bill in the parliament at the earliest.

Raman also mentioned that there is regular contact with NACO about the status of the Bill and other matters.

Another way in which Lawyers Collective has been active is through the creation of information materials and resources about the HIV/AIDS Bill. This material includes newletters on the Bill in different languages and chapter summaries in English and Hindi. It is available for use by all organizations doing advocacy work.

Mithali and others from Orissa commented that they are in desperate need of materials. Raman responded that it would be possible to pass those materials on through courier.

Raman noted that Lawyers Collective has also been very active in working with networks. We supported the signature campaign carried by Indian Network for People Living with HIV/AIDS (INP+) in which over 20,000 signatures were collected and submitted to the Prime Minister’s Office. It was also through these types of partnership that several activities were planned and executed for the Global AIDS Week of Action. In India, this year the week focused on the importance of the HIV/AIDS Bill.

Raman commented that unfortunately, earlier efforts to build the coalition did not cover the eastern part of the country, and he asked groups from Orissa and West Bengal to get involved with this work by creating local level coalitions which could then feed into the National Coalition.

Lastly, Raman mentioned that LCHAU has also done a great deal of media advocacy and that a positive outcome of this is a great deal of media coverage. He noted that many others in the coalition had taken up this relationship building with the media, which is an excellent step forward.

In concluding the presentations on past and present advocacy efforts, Raman asked for participants to spend some time discussing the possibilities for future advocacy. Participants were divided into regional groups and met to discuss strategies for the upcoming months.

Future Bill Advocacy in Eastern India: Feedback from Regional Group Discussions (Led by Biswajit Das (BNP+)

In preparing for these group discussions, Pawan asked that groups focus on discussing how much pressure it is appropriate to exert on the government. Anand noted that no matter how much pressure is exerted, it is unlikely that it will make anything change rapidly. Raman also contributed that it is not just about getting the Bill passed but about making sure it gets passed in an appropriate form. We cannot pressurize the government only to pass a Bill which has many important sections removed.

In response, Shashikant asked whether there has been any feedback about which sections have been criticized. Anand replied that there has been no feedback whatsoever. Over the past few months, there has been no movement at all. He also mentioned that we have been speaking with the Health Ministry about why this is the case.

Lastly, Pawan mentioned that it is important to come up with new strategies for highlighting the need for the Bill, particularly in the context of this lack of movement by ministries. He suggested one tactic of framing the delay in terms of the human cost per day. This would work as a human interest story that the media may be interested in.

Following the group discussions, both groups presented to the entire audience to share their ideas for future advocacy.

Biraja presented for the group from Orissa. He began by mentioning that OASF, SAATHII, and others play a strong coordinating role, and that under their guidance, the following activities will be implemented by local-level organizations.

1.There is strong interest in having a national day of action on the HIV/AIDS Bill. All groups can plan individual or locally collective actions, but there does not need to be larger level coordination than this. The role of Lawyers Collective would be to issue the call for the day of action, and to publicize the actions taken in different areas.
2.Groups should network and do community-level education.
3.Local MPs must be educated and involved in the Bill advocacy. They must be encouraged to use appropriate mechanisms for pressuring the ministry about the Bill.
4.District level bar associations and law authorities should be sensitized about the Bill, and their support gained. This can be done at the state level by SAATHII, and at the local level by individual local organizations.
5.The formation of an e-group would assist the publicizing of efforts and networking activities.
6.Government and the corporate sector can be sensitized at the state level by Action Aid.
7.Coalition members themselves can be further educated and sensitized by SAATHII.
8.Doctors and paramedical staff are important allies who should be sensitized by local level organizations.
9.The postcard campaign must continue. The current goal is for 1 lakh postcards to reach parliament before November. This should be implemented at all levels in all activities.
10.Lawyers Collective should send a letter to OSACS informing the project director about the Bill. Then organizations can work with them to further sensitize and to also do advocacy.
11.Current advocacy material to be translated in Oriya.

Anand responded to this list by first asking about translation possibilities and asking regional members to take responsibility for coordinating with LCHAU staff on this action. He also noted that the national day of action is strongly supported by other coalition members as well, and that it should happen. Additionally, Anand said that it would be wise for the coalition to have regional meetings once every 2 months as a means to stay coordinated. Regions can be defined by the coalition members themselves, and then a grid can be formed. In this way, the National Coalition can become wider-reaching. This can also contribute towards planning the national day of action, as a small group of people from each region can coordinate for that area.

Though the larger coalition cannot meet regularly, we can use technology to stay connected. We can use the webpage and listserv to send out minutes from the Eastern region, including a list of our recommendations for strategies.

Advocacy efforts for this Bill should come from all parts of the country, so all 5 regions must be covered. At this point, this has almost happened: in September, a meeting will be held in the Northeast, completing coverage.

Biraja called for a regional meeting in September.

Raman commented that a national day of action is difficult to coordinate and that perhaps a regional day of action would be easier, or else make the national day of action happen on a longer time frame. Pawan subsequently asked whether only the date would be the commonality for the day of action or whether anything else would be done in common. Anand responded that there is no need for coordinating this day of action, only to announce the day and let local groups plan and execute their activities on a local level. If groups inform LCHAU about their plans, LCHAU can publicize using their website.

Anupam Hazra then spoke for the regional group from West Bengal. He noted that the West Bengal group had very similar suggestions as the Orissa group. West Bengal organizations called for greater sensitization of MLAs. Anupam also mentioned that MP networking and advocacy must be improved, since as of now, there is only one MP who takes specific interest in health and HIV-related issues.

Raman responded to this point by mentioning that since LCHAU has been developing relationships with MPs, the organization can provide coalition members with MP contacts. He noted that he would send coalition members in this region the list of local MPs with whom a relationship has been built.

Anupam also mentioned that the West Bengal group is strongly interested in a national day of action, and furthermore, they are interested in including Bill advocacy as an issue at the local level. They would like to get other organizations involved as well.

Anand noted that it is very clear that the national day of action is wanted by all coalition members, and that this should be put into action quickly. Pawan asked when this day of action, as well as the regional meeting, might happen. Raman replied by saying that an Eastern region meeting can be held, where representatives of Jharkhand and Bihar can also be present. He offered that someone from the Lawyers Collective can come to clarify doubts about the Bill. Raman then questioned the audience as to what the best date for such a meeting would be in this region, and audience members replied that the second half of the coming month would be best for both West Bengal and Orissa. Raman summarized by saying that the 17/18th could be the date of the Eastern regional meeting, which could be used to plan for an upcoming National Day of Action.

Shashikant noted that there have already been several meetings for community education about this Bill, but that programming must move beyond meetings into actions. An audience member requested copies of the draft Bill to distribute for local community education. Anand replied that LCHAU is happy to supply these, but that translation is something which must be taken up locally.

The meeting concluded with a vote of thanks, given by Biswajit Das of BNP+, who thanked meeting attendees for their participation and encouraged them to take this information and call for advocacy to other local organizations. He noted that an action plan for future advocacy was discussed and that everyone must come forward to assume a part in this plan. Raman concluded by inviting participants to stay for the press conference on the meeting.