St. Paul's Trust of India, saving lives of PWHA
People living with HIV/AIDS need empathy, not sympathy, spoke Dr. KI Jacob at the 1st National Conference of the AIDS Society of India last month. Dr Jacob told participants that helping patients live healthy and meaningful lives was the best thing healthcare providers could do.
Experience from the St Paul's Trust in India suggest ways that this philosophy can be put to work to enhance the lives of people with HIV/AIDS.
Dr Jacob illustrated this approach with the example of his first HIV positive patient, Raju, whom he met in the early 1990s. Raju finally began taking antiretroviral drugs, or ARVs, after 13 years of good nutritional support, prompt treatment of opportunistic infections and sexually transmitted infections, as well as good personal hygiene. Raju also exercised great caution, drinking only boiled water and eating only bland and home-cooked food to avoid opportunistic infections. Discipline in life helped keep Raju alive, which Dr Jacob sees as a valuable lesson in terms of life-extending options.
Dr Jacob, a doctor who founded St. Paul's trust in 1991, works with organisation, in Samalkot, India. The trust takes care of more than 5,000 HIV positive people, including 220 HIV positive children and close to 6,000 children of people living with HIV/AIDS. The challenge is to ensure that they are able to live their life with productively, with dignity, and without stigma or discrimination.
At the trust, children are not required to work. Instead, they study in public schools. The school administration, students and families receive intensive sensitisation to HIV/AIDS issues, so the children can study in an environment free from stigma and discrimination. Out of 220 HIV positive children, 100 are studying in the lower grades at school.
According to Dr Jacob, the common belief that a child living with HIV may not see his or her 3rd or 4th birthday is misleading. St Paul's shows that good nutritional support, a sensitive paediatrician able to treat opportunistic infections, and caution with issues such as drinking water and hygiene, help children infected with HIV to live long, meaningful lives, he says. The oldest child at the trust is now 16 years old and still attending school.
Maintaining health is key, but not difficult, argues Dr Jacob. For example, it is important that children living with HIV sleep under mosquito nets, because bites cause itching, allergy and skin diseases. HIV infected children at St Paul's also receive inexpensive milk powder made locally. Simply locating such financially sustainable options for nutritious food supplements is another way of maintaining overall health.
These experiences bear out. Because of good healthcare, nutrition and other support, no HIV positive child has fallen sick or died at St Paul’s over the last two years. Knowing the disease progression, Dr Jacob says that ARVs will clearly become vital to ensure survival at some stage. The trust is there to make this available.
St Paul's Trust also promotes income generation programmes (IGPs). To do this, people with HIV/AIDS are provided with from Rs 500 to 5,000 [US $12 to US $115] to start various kinds of small-scale businesses.
Not all people living with HIV/AIDS are able to endure heavy agricultural labour work, so alternative IGPs are extremely important to allow them to sustain themselves with dignity. Some of the trust's beneficiaries have sold milk, fish and flowers, while others have begun old bottle collection, started mobile kirana, which are small 'general stores', and opened mini hotels.
The people who have been helped report little stigma or discrimination. But the main challenge, says Dr Jacob, is not only helping start small-scale enterprises, but in sensitising the community enough that the products or services will be bought.
Income generation programmes (IGP) are a form of occupational therapy, because they help to restore and maintain people's sense of worthiness. Culturally, this is also appropriate because bread-winners will benefit from more respect at home and within the community.
A particular component of this livelihood support approach is intended to support the huge population of HIV-infected and -affected widows. To address this, St Paul's started self-help groups (SHGs), each with about ten members. About 250 women with HIV/AIDS, and a further 250 who are directly affected by the disesase, are now running their own mahila (women's) bank. Whenever a woman needs money she can withdraw up to Rs 2,500 (US $58), with friendly repayment terms. In fact, repayment has been so good that the amount the bank provides to each SHG has been increased from Rs 40,000 to Rs.4,00,000 [US $920 to US $9190 respectively].
Ten women in each self-help group meet once a month to share grievances. This builds tremendous camaraderie and a support network among the members. The president and secretary of each group regularly visits the government bank for meetings, which gives them confidence and a chance to promote their own interests.
St Paul's Trust is committed to the principles of GIPA (Greater Involvement of People living with HIV/AIDS) and MIPA (Meaningful Involvement of People living with HIV/AIDS) principles. One example is the fact that 20 of the 60 full-time staff are people living with HIV/AIDS. Some of the credit for the trust’s comprehensive care and support programme, recognised as one of the best in the world, thus goes to the people with HIV/AIDS who have become involved.
Another example of GIPA are the 25 young people living with HIV/AIDS who volunteer as 'positive speakers'. These speakers have made a big difference in addressing stigma and discrimination within the region. They have also promoted the formation of Coastal Network of Positive People (CNP+), now a completely independent network directly supported by the state AIDS Control Society and Family Health International.
CNP+ has 15 full-time staff who have lived with HIV for more than eight years. With salary support from CNP+, these individuals are now able to continue their advocacy and sensitisation work while also meeting their own healthcare expenses, including ARV.
A key lesson to draw from these experiences is how crucial it is to work with local government administrations and to sensitise them towards HIV/AIDS. Dr Jawahar Reddy, district collector is now highly supportive of initiatives geared towards improving care and support facilities for people with HIV/AIDS. Very recently he gave a part-loan-part-grant of Rs.15,000 [US $345] to 200 Dalit women living with HIV.
Dr Reddy has also helped improve the access of the poorest people, especially those living with HIV, to government help schemes. Another example of a good return that sensitisation to HIV/AIDS of officials can have, Dr Reddy invited over 100 HIV positive women to his bungalow last World AIDS Day, and his family had breakfast together with them. Such gestures go a long way to addressing stigma and discrimination.
Reducing stigma in the healthcare setting is also crucial to effective support for people living with HIV/AIDS. It took Dr Jacob more than five years to sensitise the staff of the 900-bed Kakinada General Hospital, so they could provide good quality, appropriate healthcare to people with HIV with no stigma or discrimination. To do this, Dr Jacob invited groups of hospital staff to interact with people with HIV/AIDS, so they could understand care and support issues first hand.
For nearly ten years, St Paul's Trust has managed to keep people living with HIV/AIDS alive and well without ARV therapy, relying instead on nutritional supplementation, treatment of infections and health literacy. But now, about 1,000 of the trust's patients need ARV to continue, while only a handful are actually able to get them. With the World Health Organization’s '3 by 5' behind schedule, and government assurances on ARV roll-out not being met, Dr Jacob wonders what will become of the other 975 people who need the drugs.
Mahatma Gandhi said, "Science without humanity is one of the seven deadliest sins". This is the guiding principle of the St Paul's Trust. Dr Jacob feels humanity cannot stay quiet while thousands of people will die a slow death during the long wait for proper ARV access.
But people with HIV/AIDS can stay alive while they wait for access to ARV medications, he stresses. And the methods used by St Paul’s are simple and effective, and applicable in many other places. Empathy, not sympathy will help the world understand that people with HIV/AIDS can and should live dignified, productive lives.
[This report was written at the 1st National Conference of the AIDS Society of India, held in New Delhi, 2-4 April 2005.]
HDN Key Correspondent Team
Email: correspondents@hdnet.org
Experience from the St Paul's Trust in India suggest ways that this philosophy can be put to work to enhance the lives of people with HIV/AIDS.
Dr Jacob illustrated this approach with the example of his first HIV positive patient, Raju, whom he met in the early 1990s. Raju finally began taking antiretroviral drugs, or ARVs, after 13 years of good nutritional support, prompt treatment of opportunistic infections and sexually transmitted infections, as well as good personal hygiene. Raju also exercised great caution, drinking only boiled water and eating only bland and home-cooked food to avoid opportunistic infections. Discipline in life helped keep Raju alive, which Dr Jacob sees as a valuable lesson in terms of life-extending options.
Dr Jacob, a doctor who founded St. Paul's trust in 1991, works with organisation, in Samalkot, India. The trust takes care of more than 5,000 HIV positive people, including 220 HIV positive children and close to 6,000 children of people living with HIV/AIDS. The challenge is to ensure that they are able to live their life with productively, with dignity, and without stigma or discrimination.
At the trust, children are not required to work. Instead, they study in public schools. The school administration, students and families receive intensive sensitisation to HIV/AIDS issues, so the children can study in an environment free from stigma and discrimination. Out of 220 HIV positive children, 100 are studying in the lower grades at school.
According to Dr Jacob, the common belief that a child living with HIV may not see his or her 3rd or 4th birthday is misleading. St Paul's shows that good nutritional support, a sensitive paediatrician able to treat opportunistic infections, and caution with issues such as drinking water and hygiene, help children infected with HIV to live long, meaningful lives, he says. The oldest child at the trust is now 16 years old and still attending school.
Maintaining health is key, but not difficult, argues Dr Jacob. For example, it is important that children living with HIV sleep under mosquito nets, because bites cause itching, allergy and skin diseases. HIV infected children at St Paul's also receive inexpensive milk powder made locally. Simply locating such financially sustainable options for nutritious food supplements is another way of maintaining overall health.
These experiences bear out. Because of good healthcare, nutrition and other support, no HIV positive child has fallen sick or died at St Paul’s over the last two years. Knowing the disease progression, Dr Jacob says that ARVs will clearly become vital to ensure survival at some stage. The trust is there to make this available.
St Paul's Trust also promotes income generation programmes (IGPs). To do this, people with HIV/AIDS are provided with from Rs 500 to 5,000 [US $12 to US $115] to start various kinds of small-scale businesses.
Not all people living with HIV/AIDS are able to endure heavy agricultural labour work, so alternative IGPs are extremely important to allow them to sustain themselves with dignity. Some of the trust's beneficiaries have sold milk, fish and flowers, while others have begun old bottle collection, started mobile kirana, which are small 'general stores', and opened mini hotels.
The people who have been helped report little stigma or discrimination. But the main challenge, says Dr Jacob, is not only helping start small-scale enterprises, but in sensitising the community enough that the products or services will be bought.
Income generation programmes (IGP) are a form of occupational therapy, because they help to restore and maintain people's sense of worthiness. Culturally, this is also appropriate because bread-winners will benefit from more respect at home and within the community.
A particular component of this livelihood support approach is intended to support the huge population of HIV-infected and -affected widows. To address this, St Paul's started self-help groups (SHGs), each with about ten members. About 250 women with HIV/AIDS, and a further 250 who are directly affected by the disesase, are now running their own mahila (women's) bank. Whenever a woman needs money she can withdraw up to Rs 2,500 (US $58), with friendly repayment terms. In fact, repayment has been so good that the amount the bank provides to each SHG has been increased from Rs 40,000 to Rs.4,00,000 [US $920 to US $9190 respectively].
Ten women in each self-help group meet once a month to share grievances. This builds tremendous camaraderie and a support network among the members. The president and secretary of each group regularly visits the government bank for meetings, which gives them confidence and a chance to promote their own interests.
St Paul's Trust is committed to the principles of GIPA (Greater Involvement of People living with HIV/AIDS) and MIPA (Meaningful Involvement of People living with HIV/AIDS) principles. One example is the fact that 20 of the 60 full-time staff are people living with HIV/AIDS. Some of the credit for the trust’s comprehensive care and support programme, recognised as one of the best in the world, thus goes to the people with HIV/AIDS who have become involved.
Another example of GIPA are the 25 young people living with HIV/AIDS who volunteer as 'positive speakers'. These speakers have made a big difference in addressing stigma and discrimination within the region. They have also promoted the formation of Coastal Network of Positive People (CNP+), now a completely independent network directly supported by the state AIDS Control Society and Family Health International.
CNP+ has 15 full-time staff who have lived with HIV for more than eight years. With salary support from CNP+, these individuals are now able to continue their advocacy and sensitisation work while also meeting their own healthcare expenses, including ARV.
A key lesson to draw from these experiences is how crucial it is to work with local government administrations and to sensitise them towards HIV/AIDS. Dr Jawahar Reddy, district collector is now highly supportive of initiatives geared towards improving care and support facilities for people with HIV/AIDS. Very recently he gave a part-loan-part-grant of Rs.15,000 [US $345] to 200 Dalit women living with HIV.
Dr Reddy has also helped improve the access of the poorest people, especially those living with HIV, to government help schemes. Another example of a good return that sensitisation to HIV/AIDS of officials can have, Dr Reddy invited over 100 HIV positive women to his bungalow last World AIDS Day, and his family had breakfast together with them. Such gestures go a long way to addressing stigma and discrimination.
Reducing stigma in the healthcare setting is also crucial to effective support for people living with HIV/AIDS. It took Dr Jacob more than five years to sensitise the staff of the 900-bed Kakinada General Hospital, so they could provide good quality, appropriate healthcare to people with HIV with no stigma or discrimination. To do this, Dr Jacob invited groups of hospital staff to interact with people with HIV/AIDS, so they could understand care and support issues first hand.
For nearly ten years, St Paul's Trust has managed to keep people living with HIV/AIDS alive and well without ARV therapy, relying instead on nutritional supplementation, treatment of infections and health literacy. But now, about 1,000 of the trust's patients need ARV to continue, while only a handful are actually able to get them. With the World Health Organization’s '3 by 5' behind schedule, and government assurances on ARV roll-out not being met, Dr Jacob wonders what will become of the other 975 people who need the drugs.
Mahatma Gandhi said, "Science without humanity is one of the seven deadliest sins". This is the guiding principle of the St Paul's Trust. Dr Jacob feels humanity cannot stay quiet while thousands of people will die a slow death during the long wait for proper ARV access.
But people with HIV/AIDS can stay alive while they wait for access to ARV medications, he stresses. And the methods used by St Paul’s are simple and effective, and applicable in many other places. Empathy, not sympathy will help the world understand that people with HIV/AIDS can and should live dignified, productive lives.
[This report was written at the 1st National Conference of the AIDS Society of India, held in New Delhi, 2-4 April 2005.]
HDN Key Correspondent Team
Email: correspondents@hdnet.org
posted by AIDS-Care-Watch at 11:45 am
0 Comments:
Post a Comment
<< Home