Objective="Improve the quality of the life of People Living With HIV/AIDS (PLHA) and protect their right to health."
Details for Reform Option "Cheyutha, A Helping Hand For People Living With HIV/AIDS, Andhra Pradesh."
Responding to the needs of a growing number of people living with Human Immuno-deficiency Virus (HIV) in Andhra Pradesh and address the issue of stigma, Leprosy Relief Association (LEPRA) Society, an international non-governmental organization (NGO), launched a programme called ‘Cheyutha’ in the twin cities of Hyderabad and Secunderabad. Cheyutha means ‘helping hand’; the project aims to address: quality treatment for opportunistic infections, create an enabling environment for and strengthen the network of PLHA, protect and promote the rights of the infected, promote community and family-based care and support to PLHA, establish linkage with available health services in the two cities and promote development activities for HIV infected and affected children.
LEPRA Society joined hands with Network of People Positive (NPP+) Andhra Pradesh, a community based organisation established by like-minded PLHA to strengthen the network as well as to disseminate information about the support centre, Cheyutha.
Group meetings: Such meetings were regularly organised at the beginning of the project to create bonding. Most of these meetings were used as a platform to discuss various aspects of positive living with emphasis on what precautions to take to lead a normal life.
Support Centre: A PLHA support centre (PLHASC) was set up and then had to be shifted to a bigger place owing to growing number of PLHA visiting the centre. Counselling is given to PLHA and their families. Marriages between eligible PLHA have been promoted by Cheyutha. The support centre has a recreation area, where PLHA can play caroms, chess, read books, news papers and magazines. Besides, PLHASC identified skills of PLHA and organised occupation training programme, which helped 20 PLHA to obtain jobs. In addition, PLHASC also organised 2 learning summer camps for children infected and affected by HIV.
Staff: The project staff consists of a PLHA counsellor, principal organiser, facilitator and 5 outreach workers who are HIV positive. The medical and programmatic support is provided by the staff of LEPRA Society.
Clinic: Weekly clinics are organised for poor patients every Saturday except the first Saturday of the month. The LEPRA Society contributes to the drugs distributed free by the government hospitals to below poverty line HIV patients in the state.
Outreach work: The outreach staff regularly visits various institutions including prevention of parent-to-child transmission of HIV Centres (PPTCTCs), voluntary counselling and confidential testing centres (VCCTCs), government and private hospitals, registered medical practitioners (RMP) and other service providers to inform about Cheyutha and gain support for HIV infected persons. Besides, various mass media channels are used to disseminate information on HIV.
Health Camps: Medical camps are organised the first Saturday of every month to provide treatment against opportunistic infections. The health camps are a platform for PLHA networking and increasing Cheyutha membership so as to improve the outreach services. This includes, giving information to new members on opportunistic infections, treatment facilities and contact details of the referral hospitals. Trained PLHA positive speakers are called upon to motivate infected persons towards positive living; there are 16 of them and they have been trained in positive speaking by LEPRA Society and Andhra Pradesh State AIDS Control Society.
Linkages: For referral of PLHA, LEPRA Society established linkages with government and charitable hospitals, such as Tuberculosis Hospital, Freedom Foundation Hospital and Andhra Pradesh Chest Hospital. One of the 5 outreach workers is posted at the government hospital to help poor patients, particularly those referred by the weekly clinics, procure the free anti-retroviral (ARV) treatment. Often these patients find it difficult to complete the formalities in a government institution.
Other Activities: LEPRA Society with the support from the Volunteers of Latter-Day Saint Charities, USA distributed Baby Care Kits to positive mothers and undertook a study to learn the effectiveness of a nutritional supplementation powder called Atmit among PLHA.
Currently, the network has about 700 PLHA as its members. In 2005 alone Cheyuthas’ outreach activities led to contact with 451 new PLHA. In one year, Cheyutha was able to facilitate hospitalisation of 28 PLHA, it got the CD4 blood test for immunity done for 120 PLHA and ensured that 116 patients could get the expensive ARV treatment. Cheyutha also referred 14 PLHA for TB treatment.
The outreach workers so far have sensitised 14 Rural Medical Practictioners (RMPs) and 28 NGOs working in and around the twin cities. Eleven health camps were organised in the past year alone. Impressed by their work Osmania Medical College, Hyderabad offered to sponsor free ARV treatment for 15 of Cheyutha’s members. IBM, Hyderabad has agreed to hire HIV positive candidates as data entry operators. Cheyutha has thus assisted 20 PLHA to find gainful employment.
A total number of 109 children of PLHA have been identified for educational support. A sum of INR 5,000 per family was provided towards meeting the schooling needs of the children.
INR 12 lakhs (1.2 million) was given by LEPRA society for support centre, clinical staff and medicines. Tides foundation, UK based provided INR 1.3 lakhs (130,000) . Satyam Foundation donated INR 50,000 for other support activities. Central Bank staff provided cereals, rice, cupboards. Volunteers of Latter-Day Saint Charities, USA sponsored nutritional supplementation powder and baby care kits.
Hyderabad and Secunderabad.
Four weeks as the network of PLHA existed prior to launch of Cheyutha and LEPRA Society had been providing medical support for this network for more than two years before the launch. The programme was flagged off in February 2005.
Conducive environment: Organised general awareness programme in community setting.
Comprehensive package: The programme tried to address the mental, economic and social needs of PLHA. It was an opportunity for PLHA to ventilate grievances on stigma and discrimination; they also gained strength by sharing experiences.
Services: Weekly clinics provided free treatment to poor patients. Various mechanisms were established to provide necessary and quality referral services.
Stronger networking: The programme was able to expand and build cohesiveness into the PLHA network to generate positive spirit towards life.
Premises: Stigma associated with the HIV makes it difficult to find a suitable place to house the PLHASC.
Group dynamics: Within PLHA there exist group dynamics and communication gaps.
Treatment: Motivating the PLHA to adopt precautions and treatment for opportunistic infections.
Hopelessness: The general pessimism among PLHA is a challenge.
Livelihood: To find appropriate alternative employment.
Government and local support.
Provision of legal support system to PLHA.
Referral linkages for hospitalisation and care.
Availability of requisite funds.
Effective information education and communication channels.
Who needs to be consulted
Community based organisations.
Andhra Pradesh State AIDS Control Society.
Network of Positive People.
Panchayati Raj Institutions for building same network in rural areas.
Women and Child Development Department.
Youth welfare programmes.
Possible only if funds are available. Currently, LEPRA (UK) is funding this programme.
Chances of Replication
The LEPRA society is going to start similar activities in Bhubaneswar, Orissa and other districts of Andhra Pradesh (Jaggaiahpeta in Krishna district) in 2006.
LEPRA society is also working with AP AIDS Control Society. They provide technical guidance, monitoring and capacity building to VCCTCs and PPTCTCs spread across 23 districts of Andhra Pradesh. Other ongoing projects include a clinic-based intervention programme for truck drivers and prevention programmes for vulnerable sections at 14 sites in Telengana and Rayalseema regions of AP.
Dr. Nandini Roy, HS-PROD Research Consultant, NIMS, May 2006.