India: The fight goes on
By ANUJ CHOPRA, The Hindu, 2/10/2005
The fear of testing positive for HIV and of then being ostracised is what holds back those affected from the ambitious programme of free anti-retroviral therapy.
India--"Hai HIV toh kyon ghabrate ho? Upchar karke apni umra badha sakte ho. (Why fear if you have HIV? Treatment can prolong your life.") Message on a decal pasted on a highway truck.
IN Mumbai, the AIDS capital of India, your tryst with this dreaded virus takes on epic proportions at Sir J.J. Hospital, the city's largest general hospital. As you leave behind the din of Byculla, and sidle past crimson stains of tobacco spewed on stairs, to the second floor, you notice a crowd. There are people sleeping on the floor, crammed on benches, packed in queues, all waiting — many for hours, some even for days — for their turn to meet the anti-retroviral therapy (ART) counsellor. People diagnosed with HIV, not just from Mumbai, but also even from far-flung places of Madhya Pradesh and Orissa throng here for ART.
Kailash Nath (name changed), a 52-year-old gaunt man impatiently waits on a hospital bench, a handkerchief covering his mouth against the hospital smell. After three gruelling hours of waiting, he finds his patience stretched to the limit. But Kailash is determined to not leave without treatment.
He first tested positive for HIV in mid-1997 — he's not comfortable disclosing the source of his infection — but ignored it so far as he couldn't afford expensive antiretroviral (ARV) drugs. Working as a contract labourer, earning a meagre Rs. 2,000, and supporting a family of four, paying close to Rs. 3,000, at that time, for ARV drugs every month was too much. He fell severely ill with tuberculosis two years ago, he says, but could never begin ART.
However in January this year, the National AIDS Control Organisation (NACO) began a programme to offer free anti-retroviral drugs at 25 centres across the country, with the help of World Health Organsiation (WHO) and UNAIDS. It seems to be giving Kailash — and several like him who cannot afford ARVs — a new lease of life.
For many, ARV still out of reach
"Even today's rock bottom prices of ARV drug cocktails — Rs. 1,200 to Rs. 2,500 per month —
are far beyond the reach of the low income group," says Dr. Alka Deshpande, AIDS specialist at J.J. hospital, which takes on roughly 25 per cent of India's total ART load.
"Even for those who could afford them, crimps in family budgets meant discontinuation of the dosage. With this free programme, people are less susceptible to doing that."
Vidya Rhaokhade, an ART counsellor chides Rakesh Bapat (name changed), 34, for stopping his dose three months after initiating the programme. After regaining health temporarily, Rakesh, a clerk at a government office, began skipping his ARV doses as it induced sleep and made him gain weight, and thus impinged on his work. Because of this lapse, Rakesh's CD4 cell count has plummeted to dangerously low levels. The counsellor exhorts him to unswervingly stick to his ART regimen along with a rich, nutritional diet.
"If you stop again, your body will develop resistance against these drugs," she warns Rakesh.
She prescribes the expensive Efavirenz based ARV treatment for him — a prescription that would be unaffordable and therefore out of Rakesh's reach, if it weren't for this free programme.
India is spending $300 million on the current National AIDS Control Programme, and has taken a World Bank loan of $191 million. The Geneva based Global Fund has pledged a grant of $ 107 Million to India to fight HIV, malaria and tuberculosis out of which $12.6 million have already been disbursed. A recent signature on June 27 will allow disbursement of $21.7 million more by the end of August to aid this programme in six States with the highest prevalence of HIV, Dr. Richard Feachem, Global Fund's director, said from Geneva.
Dr. S.Y. Quraishi, programme head, NACO, is enthused by the success of 25 centres — which have reached out to over 30,000 people in the past seven months. NACO plans to offer free ARV therapy at 75 centres across the country by year-end, he announced, which would reach out to at least a lakh more. If all goes well, there could even be 100 centres across the country, by the beginning of next year, that'll treat thousands more. Dr. Quraishi rubbishes fears that this programme will be valid just for a year. "Our commitment is to provide life-long treatment," he says.
Impediments
However, the programme needs to be scaled up several notches. There are 5.1 million believed to be living with HIV in India, the highest in the world after South Africa. According to the WHO, roughly 7,10,000 of these are in need of the gold standard of AIDS treatment immediately. The 30,000 who receive it are far below the WHO treatment target of 3,55,000 people this year.
"Indian pharmaceutical companies are global exporters of low-cost generic ARV drugs to over 200 countries. Their supply is not a problem," says Dr. Alka Gogte, a counsellor with UNAIDS.
"The problem is the slack delivery systems not reaching out to people," she believes.
Dr. Quraishi also evokes concern about the rapid growth of resistance for first-line regimens and the unavailability of second-line ARV drugs to counter them. "I am extremely worried about this. The Patent's Act prevents generic production of second-line ARVs. They are nearly 21 times costlier than first-line ARVs."
Stigma, an area of concern
The expensive paediatric formulation of ART, too, is absent from this programme and will only be made available in the next few weeks. For now, ARVs for adults, in smaller doses are used for the treatment of children. But that's not as effective.
Only 14 out of the remaining 50 ART sites proposed to start by year-end have so far received central government clearance. Dismal infrastructure of public hospitals across the country, says
Dr. Quraishi, is creating logistical problems in setting up testing labs and in training doctors and counsellors for the programme.
Dr. S.J. Habayeb, WHO representative in India, points out that the stigma associated with HIV is another area of grave concern. "The fear of testing positive, the fear of being kicked out of one's community if found HIV positive and public humiliation is what's holding people back from this programme," he says.
Those who can afford ARVs, experts say, prefer the private sector for treatment, to avoid the humiliation of public hospitals. That's a pity, believes Dr. Habayeb, because with private sector involvement, this programme could have been far-reaching.
"Since 84 per cent of cases of HIV are transmitted through sexual contact, this disease has an element of morality associated with it. So HIV patients are tagged immoral even if they've got it through an infected needle. And that perception needs to change," says Dr. Vimla Nadkarni,
Head of the Department of Psychiatry, Tata Institute of Social Sciences.
In June, this year, Kalu Khurva, a 34-year-old HIV positive man jumped to his death from the third floor of J.J. hospital. Earlier in April, two men, both 28 years old committed suicide by jumping from the fifth floor of the hospital, on two consecutive days. Considering the stigma associated with HIV/AIDS in India, perhaps the only way they saw to ameliorate their suffering, was to end their lives.
There is still hope
Heena and Jagdish Patel, 24 and 28 respectively, a married couple from Surat, too, wanted to end their lives when they first tested positive. "Log HIV ke naam se ghabrate hain. Lagta hai jaise zindagi hi khantam ho gayi (HIV makes men shudder. It whittles away all hopes of survival") they say.
Heena was infected by her first husband, three years ago, who later died of AIDS. A widow and HIV positive, she was a virtual outcast in her own family. After a few despairing years, she met Jagdish, who runs a tea stall in Surat, through India's first marriage bureau for HIV infected people in Surat.
Today, Heena and Jagdish are like any other happily married couple, giving each other hope and succour. "There's a lot of loneliness in this condition, because of bleak family and social support. Our marriage has brought about companionship," says Heena with an engaging smile. "'You are HIV+, but you will live, we give each other hope whenever spirits go damp," says Jagdish. Jagdish and Heena have to travel to Ahmedabad to avail of the Government's free ART programme and hope that this will someday begin in their hometown, Surat.
"Such marriages are the biggest sign that all those with HIV can lead normal lives," says Dr. Gogte.
Having come a long way since in 1992 when India became the first country to seek World Bank assistance to begin a national programme to address the AIDS issue, can India really turn around its AIDS situation in the near future?
Dr. Denis Broun, India representative of UNAIDS, is cautiously optimistic that the Government's commitment to address HIV can turn the situation around. "The fact that India is involved in high-level clinical trials for AIDS vaccines shows how the country is at the cutting edge of HIV science," he says. "As high risk States like Tamil Nadu and Maharashtra have recorded stabilisation and even a decrease of AIDS prevalence, there's every reason to be optimistic."
Source: The Hindu
The fear of testing positive for HIV and of then being ostracised is what holds back those affected from the ambitious programme of free anti-retroviral therapy.
India--"Hai HIV toh kyon ghabrate ho? Upchar karke apni umra badha sakte ho. (Why fear if you have HIV? Treatment can prolong your life.") Message on a decal pasted on a highway truck.
IN Mumbai, the AIDS capital of India, your tryst with this dreaded virus takes on epic proportions at Sir J.J. Hospital, the city's largest general hospital. As you leave behind the din of Byculla, and sidle past crimson stains of tobacco spewed on stairs, to the second floor, you notice a crowd. There are people sleeping on the floor, crammed on benches, packed in queues, all waiting — many for hours, some even for days — for their turn to meet the anti-retroviral therapy (ART) counsellor. People diagnosed with HIV, not just from Mumbai, but also even from far-flung places of Madhya Pradesh and Orissa throng here for ART.
Kailash Nath (name changed), a 52-year-old gaunt man impatiently waits on a hospital bench, a handkerchief covering his mouth against the hospital smell. After three gruelling hours of waiting, he finds his patience stretched to the limit. But Kailash is determined to not leave without treatment.
He first tested positive for HIV in mid-1997 — he's not comfortable disclosing the source of his infection — but ignored it so far as he couldn't afford expensive antiretroviral (ARV) drugs. Working as a contract labourer, earning a meagre Rs. 2,000, and supporting a family of four, paying close to Rs. 3,000, at that time, for ARV drugs every month was too much. He fell severely ill with tuberculosis two years ago, he says, but could never begin ART.
However in January this year, the National AIDS Control Organisation (NACO) began a programme to offer free anti-retroviral drugs at 25 centres across the country, with the help of World Health Organsiation (WHO) and UNAIDS. It seems to be giving Kailash — and several like him who cannot afford ARVs — a new lease of life.
For many, ARV still out of reach
"Even today's rock bottom prices of ARV drug cocktails — Rs. 1,200 to Rs. 2,500 per month —
are far beyond the reach of the low income group," says Dr. Alka Deshpande, AIDS specialist at J.J. hospital, which takes on roughly 25 per cent of India's total ART load.
"Even for those who could afford them, crimps in family budgets meant discontinuation of the dosage. With this free programme, people are less susceptible to doing that."
Vidya Rhaokhade, an ART counsellor chides Rakesh Bapat (name changed), 34, for stopping his dose three months after initiating the programme. After regaining health temporarily, Rakesh, a clerk at a government office, began skipping his ARV doses as it induced sleep and made him gain weight, and thus impinged on his work. Because of this lapse, Rakesh's CD4 cell count has plummeted to dangerously low levels. The counsellor exhorts him to unswervingly stick to his ART regimen along with a rich, nutritional diet.
"If you stop again, your body will develop resistance against these drugs," she warns Rakesh.
She prescribes the expensive Efavirenz based ARV treatment for him — a prescription that would be unaffordable and therefore out of Rakesh's reach, if it weren't for this free programme.
India is spending $300 million on the current National AIDS Control Programme, and has taken a World Bank loan of $191 million. The Geneva based Global Fund has pledged a grant of $ 107 Million to India to fight HIV, malaria and tuberculosis out of which $12.6 million have already been disbursed. A recent signature on June 27 will allow disbursement of $21.7 million more by the end of August to aid this programme in six States with the highest prevalence of HIV, Dr. Richard Feachem, Global Fund's director, said from Geneva.
Dr. S.Y. Quraishi, programme head, NACO, is enthused by the success of 25 centres — which have reached out to over 30,000 people in the past seven months. NACO plans to offer free ARV therapy at 75 centres across the country by year-end, he announced, which would reach out to at least a lakh more. If all goes well, there could even be 100 centres across the country, by the beginning of next year, that'll treat thousands more. Dr. Quraishi rubbishes fears that this programme will be valid just for a year. "Our commitment is to provide life-long treatment," he says.
Impediments
However, the programme needs to be scaled up several notches. There are 5.1 million believed to be living with HIV in India, the highest in the world after South Africa. According to the WHO, roughly 7,10,000 of these are in need of the gold standard of AIDS treatment immediately. The 30,000 who receive it are far below the WHO treatment target of 3,55,000 people this year.
"Indian pharmaceutical companies are global exporters of low-cost generic ARV drugs to over 200 countries. Their supply is not a problem," says Dr. Alka Gogte, a counsellor with UNAIDS.
"The problem is the slack delivery systems not reaching out to people," she believes.
Dr. Quraishi also evokes concern about the rapid growth of resistance for first-line regimens and the unavailability of second-line ARV drugs to counter them. "I am extremely worried about this. The Patent's Act prevents generic production of second-line ARVs. They are nearly 21 times costlier than first-line ARVs."
Stigma, an area of concern
The expensive paediatric formulation of ART, too, is absent from this programme and will only be made available in the next few weeks. For now, ARVs for adults, in smaller doses are used for the treatment of children. But that's not as effective.
Only 14 out of the remaining 50 ART sites proposed to start by year-end have so far received central government clearance. Dismal infrastructure of public hospitals across the country, says
Dr. Quraishi, is creating logistical problems in setting up testing labs and in training doctors and counsellors for the programme.
Dr. S.J. Habayeb, WHO representative in India, points out that the stigma associated with HIV is another area of grave concern. "The fear of testing positive, the fear of being kicked out of one's community if found HIV positive and public humiliation is what's holding people back from this programme," he says.
Those who can afford ARVs, experts say, prefer the private sector for treatment, to avoid the humiliation of public hospitals. That's a pity, believes Dr. Habayeb, because with private sector involvement, this programme could have been far-reaching.
"Since 84 per cent of cases of HIV are transmitted through sexual contact, this disease has an element of morality associated with it. So HIV patients are tagged immoral even if they've got it through an infected needle. And that perception needs to change," says Dr. Vimla Nadkarni,
Head of the Department of Psychiatry, Tata Institute of Social Sciences.
In June, this year, Kalu Khurva, a 34-year-old HIV positive man jumped to his death from the third floor of J.J. hospital. Earlier in April, two men, both 28 years old committed suicide by jumping from the fifth floor of the hospital, on two consecutive days. Considering the stigma associated with HIV/AIDS in India, perhaps the only way they saw to ameliorate their suffering, was to end their lives.
There is still hope
Heena and Jagdish Patel, 24 and 28 respectively, a married couple from Surat, too, wanted to end their lives when they first tested positive. "Log HIV ke naam se ghabrate hain. Lagta hai jaise zindagi hi khantam ho gayi (HIV makes men shudder. It whittles away all hopes of survival") they say.
Heena was infected by her first husband, three years ago, who later died of AIDS. A widow and HIV positive, she was a virtual outcast in her own family. After a few despairing years, she met Jagdish, who runs a tea stall in Surat, through India's first marriage bureau for HIV infected people in Surat.
Today, Heena and Jagdish are like any other happily married couple, giving each other hope and succour. "There's a lot of loneliness in this condition, because of bleak family and social support. Our marriage has brought about companionship," says Heena with an engaging smile. "'You are HIV+, but you will live, we give each other hope whenever spirits go damp," says Jagdish. Jagdish and Heena have to travel to Ahmedabad to avail of the Government's free ART programme and hope that this will someday begin in their hometown, Surat.
"Such marriages are the biggest sign that all those with HIV can lead normal lives," says Dr. Gogte.
Having come a long way since in 1992 when India became the first country to seek World Bank assistance to begin a national programme to address the AIDS issue, can India really turn around its AIDS situation in the near future?
Dr. Denis Broun, India representative of UNAIDS, is cautiously optimistic that the Government's commitment to address HIV can turn the situation around. "The fact that India is involved in high-level clinical trials for AIDS vaccines shows how the country is at the cutting edge of HIV science," he says. "As high risk States like Tamil Nadu and Maharashtra have recorded stabilisation and even a decrease of AIDS prevalence, there's every reason to be optimistic."
Source: The Hindu
posted by AIDS-Care-Watch at 2:40 am
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