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NGO in Special Consultative Status with the Economic and Social Council of the United Nations

An Oasis of Hope

An email interview with HIV/AIDS Program Manager Marie Elrington, RN (Australia and USA), and Masters, International Health – by e-News Editor Lynda Terry

Marie Elrington

What is the current situation regarding the rate of HIV infection in the area PRASAD serves?

It continues to grow at an amazing pace. We are averaging one to two new patients per day now. We expect by the end of 2008 that the HIV-positive population registered with PRASAD will be over 1,000. We have 620 HIV-positive people registered with us now. PRASAD’s HIV/AIDS program is like an oasis of hope in the desert for these people, as there is no program in this entire valley that provides such comprehensive care and support.

How do you determine the infection percentage in a rural area like the Tansa Valley?

It is compulsory in India for all pregnant women to register themselves at a Primary Health Center during pregnancy. PRASAD has been offering prenatal HIV screenings to pregnant women at seven of the eight Primary Health Centers in the region – and by the end of 2007, we will be offering it at all eight. This will help us determine just what the percentage of infection is. Pregnant women are considered to be at low risk because the assumption is that they are in monogamous relationships. Therefore, the percentage of pregnant women who test positive for HIV tells us something about the incidence in the general population. So far, our percentages from the tested pregnant population are close to the national average of 0.9 percent.

How does a disease like AIDS spread in a rural region like the Tansa Valley?

Well, we have a large migrant population moving in and out of the area, as well as young men from the region seeking work in the nearby cities. There also are truck routes running through the valley, which brings drivers who spread the virus, and the area also is a significant tourist and pilgrimage spot for the temples and the hot springs. Much of the activities of the villages in this area cater to the tourists, including the prostitution network, which is hidden and non-brothel based. Large numbers of commercial sex workers – an estimated 250,000 in Maharashtra state alone - move out of the cities into rural areas and back again, seeking customers.

In addition, we are discovering from our patients’ histories that pre- and extramarital affairs are not uncommon in the village setting. Because the couple knows each other, the relationship is perceived to be safe so condoms are not used.

What makes PRASAD’s HIV/AIDS Program different from other such programs in rural areas of India?

There are several reasons our program is unique. First, no other program offers the comprehensive medical services – testing, medicines, nutrition supplements, free antiretroviral therapy (in collaboration with the government), etc. – that we offer, not in this rural region and even beyond in the nearby cities.

Second, we are having success; the number of deaths from AIDS has dramatically reduced since we began this work in 2005. We have two doctors with extensive experience in the HIV field – one, a highly experienced pediatrician with a fellowship in HIV, and another who has just completed his fellowship in HIV also. This means patients are receiving the correct diagnosis with correct and timely treatment. To have two doctors with HIV fellowships in a rural and resource-poor setting such as ours is a huge asset.

Third, our Prevention of Parent to Child Transmission (PPTCT) project is the only one of its kind in the whole region, and the effectiveness of this program, combined with our comprehensive services for HIV-infected children, has contributed to our being awarded the Clinton Foundation grant to support the needs of those children. (For more about the Clinton Foundation grant, click here)

Fourth, our outreach program is extensive. Since we initiated HIV awareness in mid-2004, more than 30,000 people have received education about HIV/AIDS in the community. Programs are conducted in high schools, industries, villages, doctors’ groups, to visiting college students, and in market places.

Finally, we have an outstanding and dedicated staff. Even the best planned HIV program cannot function successfully without a non-discriminatory, caring and respectful staff. They provide the intangible yet crucial benefit of love and respect for the patients. Love and respect is the basis of our HIV/AIDS program; everything else springs forth from there.

PRASAD’s HIV/AIDS Program coordinates its efforts with a lot of other government and non-government organizations (NGOs). Can you say more about that?

Networking is an essential aspect of our HIV program, and it was one of our strategies right from the beginning. The HIV problem is too vast to try and tackle it as a lone NGO. Therefore we have consistently endeavored to link up with government-run HIV organizations to benefit from their services and save money for PRASAD.

Speaking of networking, this summer you and HIV/AIDS Program Counselor Priti Kulkanri took part in the 8th International Conference on AIDS in Asia and the Pacific (ICAAP), in Sri Lanka.

Yes, we were invited by the United Nations Development Program (UNDP) to present about PRASAD’s HIV/AIDS program at their Community Dialogue Space.

The Community Dialogue Space provided a platform to explore the vital contributions of local communities to the HIV/AIDS response, and it was an important forum for issues to be voiced and addressed directly by community leaders. The greatest successes against HIV/AIDs are observed when local communities, community-based organizations, local and national governments, local and international NGOs, the private sector and other partners together establish an “enabling environment” for that success.

The three days of the Community Dialogue Space were split into themes: the first day focused on women’s economic and social empowerment; the second day focused on human rights and PLWHA (people living with HIV/AIDS); and the final day explored the issues surrounding the governance of the AIDS response. Priti and I gave our presentation on the third day, about PRASAD Chikitsa’s collaborative work with the government.

"What is PRASAD’s approach to treating HIV/AIDS patients, and why is it so successful?

The first priority is to clear up the patients’ opportunistic infections, after which they are placed on free antiretroviral therapy (ART), if their CD4 levels are below or near 200. Patients registered in our program who are taking ART have an adherence rate to their medicine of more than 97 percent, which is above the government’s goal of 96 percent. Failure to adhere to ART can lead to rapid resistance to the drugs. Our excellent adherence rate is due to three factors:

• 1) We provide shuttle service to and from the urban medical centers where the patients must collect their ART medicine;
• 2) PRASAD has an excellent outreach worker who closely follows the people taking ART medicine; and
• 3) PRASAD provides people on ART with regular counseling and support about adherence and side effects of the medicine.

The government is so impressed with the high adherence rate of PRASAD patients that they allow a two-month rather than one-month supply of ART medicine to be disbursed. This saves time and money for PRASAD.

How do the patients respond to this treatment protocol?

After beginning ART, the patients’ recovery is usually dramatic. Their health and wellbeing improve to the point where they can return to work and start supporting their families again. We have had patients who were so sick that the relatives were preparing for their funerals, yet now they are back at work and very happy for their newfound health and grateful to PRASAD Chikitsa for the care and support. (To read personal stories of PRASAD patients living with HIV/AIDS, click here.)

What kinds of services do you offer HIV-infected children?

We provide educational support, monthly medical checkups, ART medicine, if needed, nutritional support, activity programs (such as art classes, drama, games, songs, meditation, and exercise), hygiene education, outings and educational excursions, and regular home visits to the more vulnerable children, to ensure that their basic needs are being met and that they are not being abused in any form.

As you look to 2008, what are some program needs and/or goals that you and your staff have identified?

No Primary Health Center or hospital between Ganeshpuri and Mumbai want to deliver pregnant HIV positive women. Therefore, one of our goals is to set up a delivery center for these women so they can deliver safely and free of discrimination and stigma.

Another goal is to become a nodal ART center. Recently the head of NACO (National AIDS Control Organization) in Maharashtra informed us that she personally was going to approach NACO in Delhi requesting that PRASAD Chikitsa become a nodal ART center, which means that the government will supply the antiretroviral medicine directly to PRASAD Chikitsa, and we will distribute the medicine to the patients. This will be a huge savings in time, efficiency, and costs, as the patients will no longer have to travel to Mumbai for their ART medicines. Currently, no NGO in India has become a recognized nodal ART center, so it speaks volumes for PRASAD Chikitsa’s honesty and professionalism that we are being recommended for this project.

Closely linked to a nodal ART center is the need to develop a 10-bed Community Care Center where patients will be admitted for a maximum of 15 days. Patients will be admitted to treat the more severe opportunistic infections and for three days prior to starting ART, so that they will receive extensive counseling and education about taking the ART medicine. NACO soon will call for proposals to set up an extra 24 Community Care Centers in Maharashtra, and we have been encouraged to apply for our area. If our application is successful, the government will pay 80 percent towards the set-up and operational costs.

Last but not least, we need much more physical space so that we can expand the program and meet the growing needs of the patients.

 

 

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