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A Sisterhood That Counts HIV
|by Sheela K.|
Laishram Nirmala, 40, always believed in Plato's proverb - 'friends have all things in common'. So, she goaded her friends to keep count of a common enemy - the Human Immunodeficiency Virus (HIV).
Formed two months ago, Viral Load Marup is a sisterhood of HIV+ women in Imphal, Manipur. Other than living with the virus, membership in this 'marup' ('friend' in the local Meitei language) entails periodically contributing to a fund to help the weakest among the friends get her viral load counted. Currently there are 52 members in the 'marup'; all widows between the age group of 30 and 40 years with two to three children. Most have tested positive in the last five years, while there are a few that have been living with the virus for over seven years now.
"Every month, we contribute Rs 100 (US$1=Rs 39.90) each and select the weakest amongst us to get her viral load counted," says Nirmala, who contracted the virus from her deceased drug addict husband. "The test helps us know whether the anti-retroviral treatment (ART) we are taking is countering the virus inside our bodies to the desired level."
Viral load count measures the amount of HIV in a millilitre of blood and helps a person know the rate of progress of the infection in the body. A low viral load is usually between 200-500 HIV copies, while high load ranges between 5,000 and 10,000 copies - depending on the type of tests used.
Militancy in Manipur is somewhat responsible for Nirmala and 15 others of her ilk forming the 'marup'. Outlawed outfits such as the United National Liberation Front (UNLF) and Kanglei Yawol Kanna Lup (KYKL) have been demanding their "pound of flesh" from the money NGOs receive for combating HIV.
Subsequently, the Manipur State AIDS Control Society (MSACS) has, since April this year, stopped disbursing funds to "prevent money from falling into the wrong hands".
MSACS is the nodal agency representing the National Aids Control Organisation (NACO) in Manipur, which, with over 25,000 HIV+ people, is one of India's worst hit states - along with adjoining Mizoram and Nagaland. MSACS and WHO have estimated the HIV infected adults in the state to be between 35,125 and 94,995, while the state government figure (till September 2005) is 20,980 HIV positive cases with 3,575 full-blown AIDS cases and 505 deaths.
In 1998, the rate of infection among the women was 837 against 1,000 males, the highest in India after Goa (1,000:746). Till April 31, 2003, Manipur had 2,297 female HIV cases against 8,892 males compared to 36,411 males and 12,522 females across India. The most vulnerable female age group is 21 to 30 years, comprising 1,223 HIV cases, which is 53.24 per cent of all female HIV cases in Manipur.
MSACS had been funding 67 projects aimed at combating AIDS. In 2006-07, NACO released Rs 200 million to the state, and MSACS had forwarded only a trickle before militants forced a cap on disbursement.
Community care centres for HIV+ people have started shutting down since. Some infected persons have also been "discharged" for lack of medicines and funds for follow-up action. The uncertainty in getting free treatment at the ART centres has either forced many to "return to the hidden population" or in the case of the 'marup' members, pool funds for medicines from the market.
"More than the second-line medicines that cost a fortune, we help each other to get our viral load that costs over Rs 3,000," says Thangjam Reeta, 28, a 'marup' member. "Spending this much money is unthinkable for most women who have invariably contracted the virus from their drug-addict husbands and have been abandoned by their family members - the reason why we got together to help the one among us who needs the viral load test the most."
Says Jeevan Yambem, chief functionary of Empowerment of Community for Health, Education, and Multitude Advancement (ECHEMA), an NGO which helped the women set up the group, "These women are always tense, not knowing whether the ART they are taking is minimising the viruses or not." Every second Saturday of a month, the women gather at the ECHEMA office, which is near the MSACS, to discuss their problems.
Helping the members are some doctors who have managed to coerce local clinics into providing viral load tests at a concession. "The actual cost for such tests is Rs 3,500, but the members have to pay only Rs 1,500 towards services and part of the expenditure for the tests," says Dr Diamond Sharma, an ART specialist. Dr Sharma has been associated with the Manipur Positives Network for a few years now and provides medical consultancy to most organisations running HIV/AIDS control programmes in the state.
According to T.R. Kom, Project Director, MSACS, ART in developed countries is started after conducting both viral load and CD4 counts. (The CD4 count indicates the strength of the immune system and how far the HIV has advanced. The CD4 count is used in combination with the viral load test to determine the staging and outlook of the disease.) "But in developing countries, ART administration is based only on CD4 count. India follows World Health Organisation guidelines, which say viral load is required in the case of multiple opportunistic infections and when the CD4 count of a person on ART for a long time does not cross 100."
Manipur has four free ART centres - one each at one each at Jawaharlal Nehru Hospital and Regional Institute of Medical Sciences (both in Imphal), and at Churachandpur and Ukhrul. (The last two are headquarters of the Churachandpur and Ukhrul hill districts) Free ART roll-out in the state started in 2004, but there are many people here on ART for almost 10 years now.
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