Reversal of HIV infection.
Distinct possibility of success in sight
by Usha Rai
Great strides have been made in the care and treatment of people living with HIV, and at the core of the transformation of the lives of those infected and affected are the positive people themselves. It is with great courage that they have come forward to acknowledge their status and do advocacy for those not so brave to speak up or even access the life-saving ART (anti-retroviral treatment). Distinct possibility of success in sight
by Usha Rai
From purely urban locales, their networks have spread deep into the districts, and small bands of trained peer educators are actually tracking down and bringing for treatment not only all those infected but also those who have defaulted from treatment.
The vice-president of the Indian Network of Positive People (INP+), Senthil, recalls that just five years ago in Chennai, a pregnant woman, who went for delivery of her child to a Primary Health Centre and declared her HIV positive status, was locked up in a room. Nevaprine tablets and a bottle of water were chucked into her room and from closed doors she was ordered to take it to prevent the transmission of the infection to the child in her womb.
Even when she delivered her baby no one came to help the mother or give the mandatory drug to the newborn. It was only when the complaint reached the district medical administration that someone was sent to cut the cord.
Now in South India, thanks to the strong advocacy of the positive people’s network, 75 to 80 per cent of PLHIV are not only able to deliver their babies in PHCs but also have surgeries too. But in North India the stigma and discrimination persists and accessing health, education and other basic services is still not easy. Despite the slow pace of awareness in the vulnerable states of central and north India, when 350 PLHIV recently got together in Delhi to discuss access to care and treatment, the hall resonated with hope and a new vigour.
The Global Fund for AIDS, Tuberculosis, Malaria (GFATM), an international financing organisation, showed confidence in the joint efforts of the well-known health NGO Population Foundation of India, the National AIDS Control Organisation, the positive networks and their partners to commit $ 500 million over the next six years.
This puts an end to the uncertainty over the continuation of India’s ART programme in the six high prevalence states and the eight vulnerable ones as the current phase of GFATM funding comes to an end in the six high prevalence states next March. The government’s target now is to scale up to 375 ART centres from the present 227 that are currently giving treatment to 2.8 lakh people with the help of 256 Community Care Centres and 204 Link ART centres.
In fact, Mr Taufiqur Rahman of the Global Fund feels that with the current level of political commitment to the treatment of and support for PLHIV, India can hope so see a reversal of infection in the next six years. This unique public-private partnership of four years under the Global Fund has turned the infection from being considered a death warrant to a chronically manageable disease.
There is a woman, HIV positive for 20-odd years, who has managed without ART. Today close to 300,000 PLHIV have access to care and treatment. The second line of ART is available even if so far only a few educated, urban elite with the right connections have access to it.
So, how has the turn-around happened? The district-level networks (DLN) are the key to transformation. Some 283 DLNs have been established in 27 states. It is these networks of positive people that follow up all issues, whether it is availability of ART, stigma or discrimination or a close scrutiny on defaulters who are tracked down, counselled and persuaded to go back to drugs.
By 2012 another 220 districts will be covered by the network and by 2015, the entire country will benefit from the advocacy and service delivery mechanism of the DLN. Support group meetings are held thrice a month at the DLNs and there is a sharing of views, challenges and successes of positive people.
Despite access to ART, managing opportunistic infections like tuberculosis, malaria and hepatitis is a problem because the PLHIV have to go to other departments for treatment. The INP+ had to fight for ART, then treatment for opportunistic infections and subsequently the second line of ART. Not even a thousand of the 200299 people registered with INP+ are on second line ART. After being on first line ART for about two years, it is important to test the PLHIV for the second line ART. But there are just about 20 machines in the country for doing these tests.
The champions of the DLNs are the peer educators, all of them volunteers. They are members of the community who have been selected and trained for their leadership qualities, standing in the community and their communication skills. There are some 13,500 peer educators in the country and each of them is responsible for 10 cases or clients. It is they who are responsible for bringing back into the fold defaulters or those who have dropped out from treatment and care.
Between 2007 and 2009, some 5457 dropped out and 60 per cent of them were brought back for treatment. Those who drop out are those who are still scared of being seen at an ART centre because they have not told the family about their status. In fact, it is easier to trace defaulters in a village, where everyone knows everyone else, than in a city, says Senthil. That is how deep and strong the arms of the network are!
The kind of work done by the DLNs is best exemplified by the story of Ramoji, (name changed) 19, from Guntur, Andhra Pradesh. As a 16-year-old in class 11 he suffered serious injuries in an accident and was in need of blood for surgery. His parents were poor and illiterate and finally ended up buying blood from an attendant in the hospital for Rs 100. Six months later he developed high fever and persistent coughing and was diagnosed as HIV positive. Ramoji’s parents then rejected him and would not let him into the house.
The Voluntary Counselling and Testing Centre, fearing he may commit suicide, referred him to the Guntur DLN which assured him that he could lead a happy life like other members but would have to be on medicines. The DLN members even explained the infection to the parents and asked them to take him back, but to no avail.
The DLN then moved him into a religious institute where he stayed in the hostel and concentrated on his studies. After a few months he fell ill again and was taken by the DLN to Guntur General Hospital where they found his CD-4 count had dropped very low and he was put on ART. Back at the hostel one day, the religious head asked him to give up medicine and trust in God. If he took medicines he said he would have to move out.
Despite knowing the consequences of giving up medicines, desperate for a roof over his head, he gave up medicines. The next time he fell ill, his CD-4 count was 5 and his survival seemed difficult. He was in a care and support centre for 45 days and the DLN members ensured he did not default on his ART medicines again.
After he recovered, the DLN decided to make Ramoji economically independent. After training he was made an outreach worker and given Rs 3000 as wages. Ramoji stayed in a working men’s hostel, paying Rs 2000 towards his board and lodging. He has completed his 12th boards while working for the DLN and has now enrolled for his graduation through distant learning.
But the silver clouds on the HIV horizon need to be nurtured. There is scope for better governance and utilisation of funds coming to India.
Source: The Tribune, Chandigarh, India.
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