Dear All,

I came to know about this consultation on the Draft GIPA Guidelines through the AIDSspace platform. I have been recently diagnosed with HIV and my experiences in going through the blood banks, testing centres, and hospitals prompt me to write this response. A detailed account of what I faced can be read by visiting the link http://aidsspace.org/group/14/ and clicking on “Comments”.

Increase in social acceptance and getting rid of stigma cannot be done solely with GIPA. Education for HIV prevention and treatment through mass media is grossly inadequate. However there are several issues faced by PLHIV that should have improved, if there are effective mechanisms for GIPA. Why is it that we did not consider the experiences of PLHIV all these years in improving HIV programmes? Even after many years of its existence, the National AIDS Control Organisation (NACO) is not able to completely plug the deficits and ensure that PLHIV go through a hassle-free process in accessing services. I see a lot of NGOs, Development partners, and Networks of PLHIV on board in the Committees of NACO. I am sure they are all funded in one way or the other from various sources. However, I am not sure how far they had been successful in conveying to NACO the required information on needs and difficulties of PLHIV. As a positive person, I do not see if they have done much for PLHIV. If they have done, either it is not recognised or appreciated by the authorities, or the authorities do not have capacity or the required budget.

For me, GIPA should make difference in ensuring need-based and quality services for PHLIV. However, GIPA should not be restricted to the mere creation of some positions and jobs. And then, in the proposed Technical Advisory Group (TAG) for GIPA, there are just two members who are PLHIV. Why is it that we are not proposing the Secretary of the Technical Advisory Group (TAG) to be chosen from PLHIV? Such a move will let NACO demonstrate that there is no stigma and there is acceptance from the top hierarchy. The Draft Guidelines specifies that the technical committee meets twice or more depending on NACO’s decision. However, I feel that meetings, discussions, and debates should happen more frequently and regularly. In addition, decisions should be taken quickly and implemented. Having meetings just twice a year gives out an indication that we are not serious about GIPA.

We have already wasted opportunities over the years with the slow pace in our work. There is no denying that PLHIV will be the best to carry forward the work of NACO and other organisations. However, the question that remain is how much support and authority will they be given? The Draft says that “By involvement we mean that GIPA is meant for PLHIV and the ownership should be given to PLHIV.” Giving ownership to PLHIV will be great; though I have serious doubts. I am new to this, but I am sure there would have been voices raised by PLHIV in the past for various needs including health needs, insurance, privacy, and easy access to services. Are these voices not heard by NACO or is it because there is no support from development partners, or is it that civil society is not vocal? Such concerns need serious thinking.

The Draft GIPA Guidelines appear to be a wonderful and promising document. I hope it will not remain idle in shelves. I am optimistic and hope the finalisation and implementation based on the guidelines will bring fresh changes, and give new directions to prevent HIV, and improve the lives of PLHIV.

Thanking you,

Mario Medrin,
Person Living with HIV,
Bangalore.

Dear All,

Greetings from Thiruvananthapuram! I am working as the GIPA Coordinator with the Kerala State AIDS Control Society (KSACS) and am happy to take part in this consultation.

As you all would agree, Policy Guidelines for GIPA would work at the state level, only when it is flexible and complemented by additional and customised measures addressing state-specific issues and concerns. This is essential for the successful and meaningful realisation of GIPA. Following guidance and inputs from National Level, Kerala thus took an innovative approach for GIPA by consulting the PLHIV community and civil society groups in the state for developing a state-specific GIPA strategy.

As mentioned in Dr. Harikumar’s response, the process followed was a participatory one, through which the expectations and suggestions were elicited and structured. In addition, we had discussions with the Honourable Minister for Health and Social Welfare, the Chief Secretary, and the Secretary of Health and Family Welfare. This helped to impress the government and civil society about the advantages of GIPA and what positive changes it can bring to the overall development agenda of the state. Such consultations also helped in generating a feeling that GIPA is everybody’s responsibility. The draft of this state-specific strategy document is available at http://ksacs.in/_pdf/GIPA-Final.pdf (PDF, Size: 148 KB)

The National GIPA Policy Guidelines also talks about Drop-In-Centres (DICs) as an important element of GIPA at the district level. However, it is proposed to have DICs only in high-prevalence districts. We suggest that the service of DICs may also be extended to districts other than the ones falling under A and B Categories if the district has a significant number of PLHIV.

We also have some suggestions regarding staffing at the DICs. Since it is difficult to get members of the PLHIV community with the required basic qualification for the post of accountant in DICs, a basic accounting curriculum for improving the capacity of those PLHIV who are plus-two pass may be developed. They can be employed at places where no B.Com qualified persons are available. Like wise, the minimum qualification for the post of counsellors in DICs may be revised to tenth-class pass, as it is difficult to get qualified persons belonging to the PLHIV community who have passed Plus Two. Further, it would be better if we can restrict Presidents, Secretaries and Treasurers of state level and district level PLHIV networks from being considered for paid positions in DICs.

Thanking you,

Anjana Girija,
Kerala State AIDS Control Society (KSACS),
Thiruvananthapuram.

Dear All,

I thank Kaveesher for highlighting the need to strengthen gender dimension in the GIPA Policy Guidelines.

As rightly stated in his response, there is a clear gender difference in the effects of HIV, and the prevalence of Stigma and Discrimination. However, many people do not recognise this fact. Hence we often hear a question that why we need to address gender issues specifically in the context of GIPA. People who raise such questions believe that it is unnecessary to address women's issues related to HIV separately. For example, they may point out at existing institutional structures and welfare schemes for PLHIV and ask whether who is preventing women from accessing these and benefitting out of it.

Providing everything equal may not be enough if we want to ensure gender equity. There is an element of Justice in ‘Equity’ and hence the need to specifically address Women's needs and issues. Special emphasis beyond ‘equality’ is therefore essential to address the differential effects of HIV on women. In that sense, we are happy that the Draft Guidelines included one item for the proposed Technical Officer and GIPA Coordinators as - “Develop an institutional mechanism to facilitate linkages of PLHIV with Human rights commission, bar association, children and women commission and minority commission and other concern institutions”. Hope such activities will be strictly monitored so that the guidelines can fill the gaps in existing systems to address discrimination against Women and Children in all spheres including Inheritance Rights.

With best wishes,

Bindu P. B.,
Kerala Positive Women's Network (KPWN+),
Kochi.

Dear Shantamay Chatterjee and other Members,

In relation to this consultation on the Draft GIPA Policy Guidelines, we have some serious concerns to share with you.

There had been Out Reach Workers (ORWs) who worked in collaboration with the Integrated Counselling and Testing Centres (ICTCs) of Category A and B districts till December 2009. They were facilitating the uptake of services by reaching out to different groups and linking them with various service provisions. Besides, it was an initiative which promoted Greater Involvement of People Living with HIV (GIPA) in the National Programme, as the scheme recruited People Living with HIV (PLHIV) as ORWs. However, these ORWs are now jobless just because of undue delay in finalising the fund flow strategy adopted by Infrastructure Leasing and Financial Services (IL&FS) – the agency with whom the initiative is now entrusted with. In these four months, so many people could have been reached out for HIV prevention, many mothers would not have delivered HIV positive babies, and many PLHIV could have been linked to treatment, care and support programmes. Learning from these experiences, we would like to see concrete measures in the guidelines to prevent such untoward service disruptions happening in the National Programme and to make GIPA an ongoing reality.

In many states including Rajasthan, there is no one in the State AIDS Control Society (SACS) to coordinate GIPA. The position of GIPA Coordinators in the SACS of these states are remaining vacant, in spite of having qualified candidates available. In scenarios like these, is it really going to help GIPA at state level? Hope the new guidelines will have provisions to ensure that such scenarios will not remain in future.

Beyond the representation of two PLHIV in the Technical Advisory Group (TAG) being envisaged in the GIPA Policy Guidelines, there needs to be involvement at all levels. There are qualified hands among PLHIV who can contribute at different levels of the National Programme. For example, the National AIDS Control Organisation (NACO) has a Technical Resource Group (TRG) for Anti-Retroviral Therapy. In fact, we and other organisations had requested to include a particular physician living with HIV as a member of this TRG. In spite of the fact that he is a qualified person that too working as an HIV clinician and researcher, there is no response from NACO so far.

Another issue I want to highlight is regarding the issues of children living with HIV. GIPA Policy Guidelines must consider that children also have voices that need to be listened to. Incidentally, let me point out that provision to set up 10 Comprehensive Care Home for Children was included in the annual action plan for Rajasthan. However, this provision still remains to be materialised.

Hope in the finalisation of GIPA Policy Guidelines and its subsequent implementation, all these factors are considered.

In solidarity,

Brijesh Dubey,
Rajasthan Network of People Living with HIV (RNP+),
Jaipur.

Dear Shantamay Chatterjee,

The draft GIPA Policy Guidelines for HIV programmes look comprehensive. I hope that it will be useful to ensure adequate space for the voices of communities affected by HIV. However, I would like to place before you certain lacunae that need to be articulated and addressed in detail in the draft policy.

1. The inclination of the policy seems concentrated on sections from lower economic strata. However, we have adequate knowledge that HIV percolate across every social class. The other social classes do have voices and the GIPA policy need to address those too. Where should this class articulate, as the threat of ostracisation has been bringing panic to them?

In keeping with the “social inclusion” principle, the exclusive emphasis on lower class group currently adopted in the guidelines could be rationalised. However, the high and middle income groups except for non-salaried class meet all their health related costs from “out of pocket” expenses at private health care settings. We assume this affinity to private settings may be for reasons like ignorance or affordability. Further, they may be trying to get rid of systemic issues of public health care settings such as lack of personalised care, long waiting time and undue delays, fear of getting recognised by acquaintances, keeping up with their ‘status’, lack of trust in quality of services, or even for accessibility reasons. There could also be a “health culture” in seeking localised and known remedies for any kind of illness that inflict them.

These groups may also have been missed out from our national effort in reaching with right information, intensive HIV prevention services, efforts to reduce stigma and discrimination, and impact mitigation strategies such as home-based care to their families including children. Appropriating their voices in the draft GIPA guidelines will unravel certain unknown facts and call for check mechanisms on private and other health care services. Issues such as non-adherence to national protocols on testing, counselling and treatment services, information sharing, ethical and related confidentiality issues, provision of home based care services could have been overlooked at these settings. Intervention strategies like for example, Public Private Partnership (PPP) models and their inclusion into the national care and support efforts would be possible only if their voices too are reflected in the GIPA policy guidelines.

2. Most of us recognise the differential impacts that HIV bring across gender. The impact among women could be contextualised using a vicious cycle model. Hence, women living with HIV are subjected to multifarious violence and exploitation within households and communities that impact themselves and their children’s wellbeing. Besides creating space in the drafted institutional setup, the policy also need to include clear and actionable steps to broaden their concerns with women empowerment initiatives in the country.

3. We require to pave a long path in representing voices of the PLHIV and other marginal groups like Female Sex Workers (FSW), Sexual Minorities, and Injecting Drug Users (IDU) in the democratic decision making processes. I appreciate Dr S. K. Harikumar’s proposal to approach GIPA as a development need of the state. As such, engagement of PLHIV in the Panchayati Raj, Municipality, and Corporation elections, and similar political engagement would reap broader benefits and acceptance to their otherwise unheard but inherent voices. Besides involving PLHIV in the institutional framework, the GIPA policy also need to explore an array of opportunities towards mitigation of its differential impact on all our brothers, sisters and children around.

Best wishes and with warmest regards,

Kaveesher Krishnan,
Solidarity and Action Against The HIV Infection in India (SAATHII),
Hyderabad.

Dear All,

The draft GIPA Policy Guidelines are elaborate and address many pertinent issues. My observations echo the concerns raised by Loon Gangte and Gurmit Singh. Adverse socio-economic, cultural and political environments leave People Living with HIV (PLHIV) in a difficult position. Absence of structures that contribute to policy changes makes it even more difficult.

At the risk of sounding cynical, let me share my comments. These guidelines do little to allay apprehensions that PLHIV involvement may still end up as being tokenistic and less meaningful. The guidelines seem to be more output-driven; for example, having in place the ‘right person’ and ‘right posts’. At the same time, it is less outcome-oriented as it hardly deliberates on how desired changes can be effected. Loon has eloquently put this point across.

I am particularly drawn to the weak or absent clauses related to ‘accountability’. Having strong accountability systems in place is critical for GIPA to be meaningful. By the same token of argument, I was wondering if the guidelines can include frameworks that can evaluate GIPA initiatives. Monitoring and Evaluation frameworks will help to ensure that HIV programmes achieve desired outcomes and have positive impact in terms of GIPA.

I fully understand that change is more difficult to come by than what may appear to be the case. However, in the second decade of the National AIDS Control Programme (NACP), more could be done to put words into action as far as implementing GIPA principles is concerned.

Thanks and Regards,

Dr. E. M. Sreejit,
Public Health Consultant,
Ipswitch, United Kingdom (U.K.).

Dear All,

I would like to make few comments on the draft GIPA policy guidelines.

Under the section on Guiding Principles, key objectives are enumerated in page five of the draft guidelines. Here, the first objective is listed as “The Voice of PLHIV is heard”. It goes on to explain this objective by saying that Meaningful inclusion of voices of PLHIV, including those who are marginalised because of gender, sexuality, age and behaviours in the HIV response, is the key to the success of the programme. I would like to see some deliberation on How do we make the voice of PHIV meaningful?

Inclusion of people who are marginalised based on their gender, age, sexuality and behaviour, is great. However, mere inclusion is not good enough to make the voice of PLHIV meaningful. Just because I am HIV positive or a sex worker or a drug user and I am sitting in one of the committees of NACO or SACS, are we going to claim it as meaningful GIPA? To have meaningful GIPA, there are three key things we need to look into; namely - Representation, Accountability, and Communication. These are very important if you really mean business, and not business as usual. I shall explain this further.

Ms. X or Mr. Y sits in a committee as a representative and as the voice of PLHIV. If such persons are considered as representatives of the voice of PLHIV, then they must consult their constituency to collect and collate the consensus voice before any meeting or committee. In addition, they need to report back to the constituency, the response received from the committee. Only then I would call it as meaningful GIPA and will see the impact of GIPA. This way s/he truly REPRESENT the constituency, COMMUNICATES with them and is ACCOUNTABLE to the constituency. Otherwise I will call it merely as voice of Ms. X or Mr. Y and not the voice of PLHIV. Is not this our current practice?

I do acknowledge that change is easier said then done. Nevertheless, to ensure meaningful participation, both PLHIV and networks, and NACO and SACS need to find ways to accommodate the process I mentioned above. NACO or SACS or UN or any other bodies that involve PLHIV need to give ample time for the PLHIV representative to get prepared, communicate, and consult with their respective constituencies. On the other side, PLHIV and PLHIV networks must take the burden to consult and communicate to our constituency to raise the issues and concerns of our constituency. Otherwise we often end up in raising our personal concerns or our organisation’s concern, which is not the ideology of GIPA. Or we often end up flagging the issues of the healthy and empowered folks among PLHIV instead of the needy or marginalised. Or at times we succumb to the pressure of NACO or SACS for fear of losing our contracts or grants. In such cases we become the voice of NACO or SACS and not that of PLHIV or the marginalised.

In Page 3 of the document, there is a section on Benefits of Involving People Living with HIV. In addition to those 11 benefits listed, I think the key and overarching point while answering the question “Why GIPA?”, must be for better response to the HIV epidemic leading to better results and outcome. And to reap the benefits of PLHIV involvement in the response to HIV we need to ensure the three factors I listed earlier - Representation, Accountability, and Communication.

As PLHIV leaders, we must question ourselves whether whom do we represent. Is it PLHIV, or ourselves as individuals, our organizations or networks, NACO, SACS, or UN or anyone else? Networks and leaders must be asking this question all the time.

These are my 25 paise worth contribution to this consultation.

With Best Wishes,

Loon Gangte,
Delhi Network of Positive People (DNP+),
New Delhi.

Dear All,

There is no denying the fact that involvement of People Living with HIV (PLHIV) is crucial for the success of HIV control efforts in the country. I had been working as an implementer of the National AIDS Control Programme (NACP) for 17 years in Gujarat and later in Madhya Pradesh as Additional Project Director and State Epidemiologist respectively in the State AIDS Control Societies (SACS). Based on my experience, I have two observations to share:

1. Among PLHIV themselves, there is a lot of discrimination taking place. For example, if we look at the people who are members of networks and beneficiaries, Sex Workers or Men having Sex with Men (MSM) are hardly seen. This is in spite of the fact that there are a lot of PLHIV from these Most-At-Risk Populations (MARPs) in the community. Perceptions about PLHIV as “victims” and “culprits” are rampant even among PLHIV. The present policy document does not reflect any strategy for this lacuna.
2. In some states, vested interests have emerged and the office bearers of PLHIV groups and networks are working in connivance with the so-called “AIDS Specialists” and misguiding PLHIV. They have grabbed control of the whole Community Based Organisations (CBO) and are functioning in an autocratic manner. Such practices defeat the very purpose of GIPA, by not allowing real participation of PLHIV. The dissenting voices are suppressed by threats of taking away the jobs and benefits given to them. I could not find any attempt in the new guidelines to take care of this anomaly too.

I strongly feel that both these issues need to be taken care of in the new GIPA policy guidelines.

With Regards,

Dr. D. M. Saxena,
Laxmi Narayan (L. N.) Medical College and Research Centre,
Bhopal.

Dear All,

The Draft GIPA Policy Guidelines makes me apprehensive that “Greater Involvement of People Living with HIV (GIPA)” would continue to be a mere tokenistic approach in India.

In the section on Institutional Framework for Implementing GIPA in the draft, I went through the suggested membership of the Technical Advisory Group. Only two members will be included representing People Living with HIV (PLHIV) in this group – one each from the Indian Network of People living with HIV (INP+) and the Positive Women’s Network (PWN+). I am afraid that in a body of 15 to 20 persons, most of them being professionals and officials, the voices of PLHIV could go unheard.

Moreover, INP+ or PWN+ cannot be considered as the sole representatives of PLHIV in India. These National Networks do not have the reach among all PLHIV in India. There must be space for equal participation of PLHIV representatives who are beyond these networks. Hence, the Technical Advisory Group needs to include other capable Indian Citizens living with HIV as individuals. There is a huge number of PLHIV who either did not join or left these networks due to many reasons including undemocratic practices.

It has become a permanent process whereby a creamy layer of networks always control the projects sanctioned for the community, as they are the Board Members of Networks. While these networks are registered under the Societies Registration Act, it needs to be noted that Governing Body members or Board Members cannot earn salary or honorarium from the networks. Such illegal trends also need to be stopped.

In addition, we need to promote PLHIV networks in larger organisations like we have the UN Plus for PLHIV working with the United Nations (UN). PLHIV from these organisations, international donor agencies, and professionals representing PLHIV can also be there in the Technical Advisory Group (TAG).

I shall be giving more comments in a subsequent response.

In solidarity,

Snehansu Bhaduri,
Independent Consultant,
Serampore.