A communication from the network of PLHIV of Gujarat,India--GSNP+

[Dr Rajesh Gopal]

Milestones in the journey of GSNP+: Participatory changes in Government Policy through advocacy of GSNP+ for the People Living with HIV & AIDS in Gujarat

GSNP+ introduction

Gujarat State Network of People Living with HIV/AIDS (GSNP+) is a network of HIV Positive people of Gujarat. GSNP+ is registered under Society Act on 6th February 2003 with the efforts of seven people living with HIV/AIDS at Surat . The objective of the network is to work for the people living with HIVAIDS in Gujarat by addressing various issues of HIV/AIDS.
GSNP+ is having its presence in 24 districts of Gujarat among which 22 are also registered under Society Act. GSNP+ is reaching to more than 8200 positive peoples who are already being member of GSNP+.

Vision - “To create an environment where people living with HIV/AIDS can access treatment; care and support and also can exercise their human rights without stigma and discrimination”

Backdrop- Jatan Project, run under GSNP+, focuses on identifying the children living with HIV and linking them up with the nearest ART centre, supported by Gujarat State AIDS Control Society (GSACS) and Clinton Foundation HIV/AIDS Inc. The programme has been running since June’08 in 18 districts of Gujarat. At the end of August’08 (after 6 months period), GSNP+ identified 234 children living with HIV. Along with this identification process, GSNP+ came forward with many problematic issues faced by most of the children in Gujarat .

To take some concrete action at the state level to solve the issues faced by the children living with HIV, GSNP+ decided to create a platform for the children to voice their issues in front of the government, NGOs, media and among the general population. In this regard, GSNP+ organized a “Public Hearing Programme” with supportive collaboration of Gujarat State AIDS Control Society, UNICEF and Clinton Foundation HIV/AIDS Inc. The programme was facilitated by GSNP+ with active participation of children infected and affected with HIV, who shared their own problems in front of Hon’ Health Minister, Govt. of Gujarat , Mr. Jay Narayan Vyas; Dr. Mathur and Sucheta Jasrai (UNICEF); Dr. Mewara (Reliance Industries) and Dr. Pradip Kumar (APD, GSACS).

Followed by the children sharing, GSNP+ took a step forward to make some suggestions at the state level to bring some effective change in the policy level that creates more availability of services for People Living with HIV/AIDS. Following are the made suggestions-

• Make provision for “FREE TRANSPORTATION” in all kinds of public transport (Inter city and intra city) to access ART and OI treatment with one care taker.
• Provide “SCHOLARSHIP” to HIV affected & infected children for higher education ( College Education and Boarding House)
• Provide support for “SUPPLIMENTARY NUTRITION” to HIV infected children especially who are on ART
• Special allocation and liaising with “CSR FUND” for HIV affected and infected children for all kind of social development
• Decide a fixed day (Saturday) for “CHILD FRIENDLY DAY” in all the ART center in Gujarat on which day the children and their family (if needed) would be provided ART, medical check up and playful atmosphere.
• All orphanages should ensure proper care and support of children with HIV, it would help if there is “INVOLVEMENT OF PERSON LIVING WITH HIV IN THE GOVERNING COMMITTEE OF ORPHANAGE HOME” to create discrimination free and acceptable atmosphere for HIV infected children
• Need to initiate “INTEGRATED CHILD PROTECTION SCHEME (IPCS)” in Gujarat
• “INCLUDES THE BENEFIT OF ORPHAN & VULNERABLE CHILDREN (OVC)” Scheme of Social Welfare Department to the HIV infected & affected children
• “INCREASE THE QUANTITY OF MEAL” provided in the Mid Meal Scheme under ICDS to CLHIV
• Ensuring of zero tolerance to “STIGMA AND DISCRIMINATION” in Government & private hospital set up and society.
• HIV positive orphan children are in a desperate need of “SOS TYPE OF CHILD HOME” in Gujarat . Where the child should be provided love, nutritional and treatment related care and proper education. He must be provided homing atmosphere.
After the sharing, Heath Minister committed to organize meeting with various departments of govt. such as Women and Child Welfare Department, Social Justice and Empowerment Department and Education Department. On the basis of that commitment, a meeting was organized on 24th April’09 with Health Secretary, Mr. Ravi Saxena, where he promised that he will organize a meeting with all departmental heads and the Chief Secretary, Govt. of Gujarat. On 28th of Arpil’09, GSNP+ got the opportunity to raise the above-mentioned 12 issues again, out of which govt. agreed to work out on 7 issues and asked for the proposals, as under-

Sr. No Needs Action Proposed

1 Vocational/ Economical Support. Free transportation for PLHA.
Avoid discrimination of PLHA employed & its inclusion be a Work Place Policy
2 Medical care & support
Scale up ART, LAC, CCC, DIC facilities,
Life Insurance - PLHA.
3 Social Support (children) Special Orphanage Home (SOS Model)
4
Educational Support (children) Scholarship to CLHA,
Additional Leave for CLHA.
5 Nutritional Support Supplementary nutrition to PLHA
6
Reduction of Stigma & Discrimination Media Conference
Advocacy in different depts. to deal with it

All the above-mentioned proposals were submitted by GSNP+ and within 3 months govt. agreed to mainstream the issues at the policy level. Govt. approved the following to implement on immediate basis-
• Free transportation cost for PLHA to access ARV on reimbursement basis.
• Two Special Caring Home for HIV infected and affected children in Gandhinagar and Surat .
• Nutritional support – Mainstreaming of HIV people in the ongoing medical aid scheme of Social Welfare Department and provision of Rs. 500 to each PLHA.
• Scholarship- Provision of scholarship (up to Standard 1-5 Rs.50 and from standard 6 to 8 Rs 10 and after std 10 they will get the scholarship meant for higher education of orphan children on monthly basis) to children infected and affected with HIV.
• Additional Leave- Provision of additional leave for the children living with HIV from school as per the requirement (on shared confidentiality).
• GSACS has approved budget for organizing meeting with various insurance companies and funding agencies for accessing insurance for HIV positive people.
• Social Justice and Empowerment & Education department issued letter to their concern departments at district level for providing space to positive people for positive speaking in their ongoing training programmes for reduction of stigma and discrimination.

The overall process clearly denotes the impact of proper proactive advocacy at the government level made possible by the network people which also shows the acceptance of positive network in the state level and gives a clear understanding about the flexible nature of government officials, ultimately creating more strong alliance between the GSNP+ and government.

A 'Special' thanks to Gujarat State AIDS Control Society, UNICEF and Clinton Foundation HIV/AIDS Inc., without those active involvement and guidance the success might not have been possible.