Q1/2011: HIV/AIDS Prevention and Care Report

May 24, 2011

Caitlin McQuilling

Program Background
In 2006, it was estimated that between 2 million and 3.1 million people were living with HIV in India. Once localized predominantly to the cities, evidence suggested that HIV/AIDS was spreading to rural communities. In rural India, HIV finds the perfect environment: Populations with high levels of migration to high risk areas, low levels of knowledge about HIV and STI prevention, and little access to prevention, testing, and treatment services.

The Jhabua district in Western Madhya Pradesh is 91 percent rural, 85 percent tribal, and has some of these lowest development indicators in the country. , More than half of its 1.2 million tribal inhabitants live as marginal farmers below the poverty line and 64% of the population periodically migrates to the adjacent states of Gujarat and Maharashtra, states with high prevalence of HIV. Many tribal inhabitants from Jhabua work as migrant laborers in these urban areas where they are exposed to a number to risk-factors for HIV, including sexual exploitation and contact with commercial sex workers. The low levels of knowledge of HIV and prevention methods makes Jhabua’s population especially vulnerable. Only 35 percent of women and 59 percent of men in rural Madhya Pradesh have ever heard of AIDS. In Jhabua, only 8.3% of rural married women had heard of HIV and only 23% of those who were unmarried had ever heard of HIV.

In response to the low levels of knowledge of HIV in Jhabua and rising case detection of HIV in Jhabua, the Real Medicine Foundation began its HIV/AIDS Care and Prevention Program along with partner Jeevan Jyoti Health Service Society (JJHSS), an organization running a 100 bedded hospital and various well-respected community health programs, including work in HIV, throughout Jhabua and surrounding districts since 1990. At the project’s inception in 2006, JJHSS was facilitating care for 54 patients infected with HIV. Together under the RMF and JJHSS Care and Support program this number has continued to rise, with an average of 6 to 7 new cases being identified each month. To date, over 300 individuals have been identified as HIV+, with thousands tested and counseled on the risks of HIV/AIDS. The program is now facilitating the Care and Support of over 250 individuals, including 17 children.

RMF assisted JJHSS in establishing an integrated public private partnership (PPP) HIV/AIDS service delivery set-up with a PPP Integrated Counseling and Testing Center (ICTC), PPP Link Antiretroviral Treatment Center (Link-ART), and a ‘DOTS’ treatment center for tuberculosis.
Over the past three years, RMF and JJHSS, have built a reputation across the country for providing high quality care and support for People Living with HIV/AIDS (PLHA) and for extensive community outreach. RMF is recognized by the National AIDS Control Organization (NACO) and partner organizations including the WHO as a highly effective field level organization. RMF specifically tailors HIV/AIDS prevention and care programs to the needs of the tribal communities in the region, addressing the needs of most-vulnerable populations such as children, migrants, truckers, and female sex workers (FSWs).

Progress this quarter
From January to March of 2011, RMF staff facilitated the counseling and testing of 786 individuals, identifying 9 new cases of HIV/AIDS. We helped start 3 new PLHAs on ART Treatment in Indore and shifted one patient from Indore ART to the Link ART available in Jhabua. Over 9 trips to Indore’s ART Center, we ensured over 100 PLHAs were seen by a doctor specializing in ART and that these patients were evaluated by CD4 to determine whether or not they were eligible for ART.

Technical Support to JJHSS FSW TI
Throughout 2010 RMF helped JJHSS in the microplanning and day to day implementation of their UNFPA sponsored Targeted Intervention (TI) for Female Sex Workers (FSW) in Jhabua and Nimach Districts, specifically focusing on STIs, HIV/AIDS and reproductive health services. After a year of building the capacity of the JJHSS team and after observing their increased capabilities of the day to day management of this program, RMF shifted gears to focusing more on technical support for this project rather than micromanagement of this program.

The first step to transitioning from RMF management to JJHSS management was a 10 day training course and exposure visit with two long-running FSW led TIs in Bangalore and Mysore. These organizations, Swasti and Ashodaya have successfully transitioned from NGO led TIs to Community Based Organization (CBO) led TIs managed entirely by the FSW themselves. Since our sustainability plan has always been to build the capacity of the FSW enrolled in the program to run this intervention themselves, it made sense to get this process of empowerment and capacity building started as soon as possible.

After the intensive, practical training with the Swasti and Ashodaya teams on the ground in Karnataka, this activity culminated with the official formation of MP’s first FSW CBO in March 2011. 60 women from Meghnagar, Petlawad, Thandala, Klyanpura were given information about the TI project and its activities, with a focus on women’s rights. The idea of a CBO was introduced to the women, and information regarding the benefits of creating a CBO was provided. After the meeting, 14 women pledged to form CBO and agreed for our help contribute to the TI’s work. These 14 women went on to legally register the CBO and elected a body with a President, Secretary, and Treasurer.

Under the leadership of the JJHSS FSW team and newly formed CBO team, the following progress was achieved last quarter:

Decision to shift program base
As of March 31st, 2011, RMF has decided to shift the base of operations and the partner of its HIV/AIDS program away from Jeevan Jyoti and to the Jhabua District Hospital. This move comes after over a year of internal debates over where RMF’s program, funds, and time can be put to best use over the long-term. When RMF started the HIV/AIDS program in late 2006, the only option for quality care in Jhabua district was the private facilities at Jeevan Jyoti Hospital. At the time the Jhabua District Hospital was a decrepit, corrupt, and honestly terrifying establishment where RMF employees would never consider referring a patient or loved one. The district administration was unwilling to talk about HIV/AIDS care and local doctors were afraid to even be in the same room as HIV patients.

Over the past 4 years, however, RMF has seen a drastic change in the Jhabua District Hospital and in the attitude of the district administration and doctors. After four years of advocacy at the district level and as HIV/AIDS awareness has spread country-wide, doctors are more than willing to treat HIV+ patients and are educated about Universal Precautions. The new head of the Health Department, the CM&HO, is a honest and dynamic woman who is dedicated to turning around the negative health scenario in Jhabua. The hospital has recently gone through major physical upgradations and has been awarded an International ISO Certification.

Today the Jhabua District Hospital is the best hospital in the region, with young, dedicated doctors serving their mandatory time in rural India and the best facilities we could expect in a rural hospital. Even more important, there is a hospital administration keen on improvement and willing to discuss ideas and plans to improve services offered. RMF’s staff all agree that if one of us or one of our loved ones were sick, this would be the first place we would bring them.
In recognition of this high quality, free of cost care available through the government system and also with long-term sustainability in mind, RMF has decided to shift the focus of our HIV/AIDS program to building up the services of the district hospital.

“Let’s Just Be Friends”
We leave Jeevan Jyoti Hospital as good friends. We’re proud of the system we were able to set up there and will remain on good terms and in cooperation with Jeevan Jyoti moving forwards. JJH understands the motivations behind our shifting the program. In the future, while the Care and Support program will no longer be run through Jeevan Jyoti, we will continue to support their programs by offering our technical support for the Targeted Intervention for Female Sex Workers, now run by Jeevan Jyoti and funded by UNFPA. RMF brought this program to JJHSS in late 2009 and worked hand-in-hand with JJHSS staff to set up this program throughout 2010. This year the JJHSS staff is now well trained and capable of handling this program on a daily basis, with RMF’s guidance and support but no longer need RMF’s micro-management.

As per RMF’s new MOU with JJHSS our support to JJHSS will now include:
– Training and capacity building of staff
– Reporting and data analysis

  • Each month JJHSS will submit their data and reporting to the RMF team by the 25th of each month. Then the RMF team will take 2-3 days to review the data, analyze the data, and will then schedule a time to meet with the JJHSS team to review the analysis and finalize reports

– Community Based Organization (CBO) Transition

  • RMF will hand-hold the JJHSS team in the CBO transition process and will provide strategy, training, and planning support

– Troubleshooting

  • As and when JJHSS asks for support, the RMF team can be made available for troubleshooting support

Program Moving Forwards

This is nowhere near the end of RMF’s Care and Support Program, but a healthy, sustainable new direction which will bring the program to a new level.

RMF still continue to support the PLHAs registered in our program and help make the linkages necessary to ensure their care in Indore and beyond. Now all patients presenting with OIs or other problems will be referred to Jhabua District Hospital, where they will receive free of cost, high quality in-patient and out-patient care. RMF will hire a PLHA as a “patient liaison”, someone who will be present at the District Hospital to answer any questions of PLHAs and, especially in the beginning, ensure that PLHAs receive the care they are entitled to and to report any cases of discrimination or stigma for immediate follow up. RMF will continue to support emergency cases as required and to assist with referrals to higher centers such as Indore, Ahmedabad, and Mumbai when required.

In addition to our support of the District Hospital, RMF will also be working more intensely to build the capacity of the local and state level network of PLHAs. Founded with the help of RMF in 2008, the Jhabua District Network of People Living with HIV/AIDS now has over 200 members and is now receiving funding independently from the Global Fund and PHFI. The first President of the Network, Rajpal, has now been elected President of the State Level Network for Positive People and a new local body has been elected. RMF has promised the network to provide training and capacity building of staff and is looking into implementing any new programs in partnership with the network.

Challenges Moving Ahead
One of the largest hurdles in effective treatment of tribal populations affected by HIV/AIDS in Jhabua is lack of access to comprehensive care. Under the current NACO and Madhya Pradesh State AIDS Control Society (MPSACS) guidelines, individuals diagnosed with HIV must travel to centralized ART centres for evaluation and tests. Individuals who meet certain criteria are placed on life saving ART medications, however must travel to the centre in Indore (5-6 hours on bumpy roads away) to receive regular checkups.

However, in Madhya Pradesh, this system creates many roadblocks. Madhya Pradesh, particularly southwest MP, is one of the remotest and most economically backward areas of India. Most residents reside in small villages, and have little access to roads and virtually no access to reliable transportation. Furthermore, under NACO guidelines, ART patients receive vouchers to travel on state-run transportation to ART centres, however MP does not have a state transportation system. Given the lack of infrastructure, RMF’s patient often have to travel at least six to eight hours to reach the closest ART centre in Indore, and, without RMF’s help, would have to pay for their own transportation.

These distances and financial constraints prevent many patients from accessing proper care. In order to ensure the best treatment of PLHAs, RMF currently hires jeeps to collect patients and transport them to Indore. Without assistance from RMF, patients in Jhabua would not have access to life-saving medications. Patients in surrounding districts must make their own arrangements to reach the closest ART centre.

The overall goal of RMF’s HIV/AIDS Care and Support program is to bring as many HIV/AIDS services to the district level to avoid this unnecessary travel and coordination burden on PLHAs. RMF believes that Jhabua District Hospital is capable of managing all HIV/AIDS Care and Support Services under one roof, from counseling and testing to provision of ART Medication to treatment of OIs. RMF is working hard with the Jhabua District Administration, MPSACS, and NACO to make Jhabua a model of rural Care and Support and will continue to fight for an Integrated Public Private Partnership ART Center in Jhabua.

Country Page: India Initiative Page: HIV/AIDS Prevention & Care Program