Building support for people living with HIV/AIDS in Manipur
Manipur, a small state in the north-east region of India, lies in close proximity to the “Golden Triangle,” a centre of the international drug trade, and has a border with Burma. It shares with other countries in the area rampant drug use, military action against the drug trade and the marginalisation of drug users, not to mention the added epidemic of HIV/AIDS fuelled by these factors.
The strong moral views of Manipur’s people have reinforced reactions to people with drug-related HIV/AIDS: criminalisation, ostracism, stigmatisation and rejection. Most HIV/AIDS related cases and issues are seen from the perspective of drug use.
The first HIV/AIDS cases were detected in Manipur in 1989, from a cluster of blood samples collected from injection drug users (IDUs). Since then AIDS has become a public health catastrophe. The latest epidemiological report released by the Manipur State AIDS Control Society (April 2004) puts the number of HIV infections at 17,232 of a total 108,787 blood samples screened, but poor reporting and the lack of proper monitoring tools make it hard to arrive at the exact number of people infected with HIV/AIDS. Most health care workers and service givers in the drugs and HIV/AIDS field agree that the numbers are much higher than those estimated and reported.
The public health infrastructure of Manipur is minimal, and access to the available services is heavily curtailed by poor transportation and communication facilities. A number of private clinics and hospitals cater to the better off. There is thus a huge gap when it comes to drugs or even HIV/AIDS related services in Manipur. There are rampant cases of stigma and discrimination towards people living with HIV/AIDS in the health care system.
Yet Manipur has developed a system of what can best be described as “peer driven responses”. There has been a response from the community of those affected by drug use and/or HIV/AIDS, which has sustained a strong and positive force. The lack of professional skills, finances or even infrastructure notwithstanding, this small state is home to a throbbing pulse of shared experiences and expertise that help keep people living with HIV alive. The lack of proper documentation and publicity skills, however, means that these grass roots endeavours are not properly acknowledged.
There are many living examples of life-extending treatment which have been in place for quite some time and have nothing to do with provision of anti retroviral drugs. These include the way that drug users have rallied and come together to render services covering emotional support, counselling, referrals and linkages to drug related services and care support programs (detoxification, rehabilitation, health related care including home-based care etc).
There are also the various self-help groups which are formed by different peer groups (widows of drug-users, people living with HIV/AIDS, ex-drug users), that give avenues for skill-building exercises for basic sustenance through vocational training in areas such as embroidery, wool knitting, tailoring etc for women, and mushroom cultivation, poultry and pig-raising for men.
These self-help groups ensure the presence of peers in service settings, as counsellors, outreach workers, and care providers. The strength gained through the strong grass-roots activism that is so inherent in the way those affected by drug use and HIV/AIDS have come out as program implementers is shown in their ability to negotiate with “professional” HIV/AIDS related service givers and funding agencies.
The members of these groups have a certain group dynamics among themselves: sharing felt needs and issues, networking with related agencies, training, discussions and small income generation schemes. Self-help group members keep aside appointments for formal meetings and discussions (mostly twice a month) where they plan forthcoming activities and share concerns related to their health. Small amounts of money, ranging from 10 to 20 rupees (less than US$0.50) are put in as subscription fee at every meeting, which is put aside for buying medicines for any member.
Meme (name changed) of Women Care Group, a self-help group of widows of drug users formed though a project undertaken by the Social Awareness Service Organisation (SASO) says: “Even the formation of our group did not happen easily. Because I was the widow of a drug user, my in-laws did not really encourage me to go out of the house. I was scared myself, thinking over what others would say. When I realised there were others like me and that we should get together, if only to share our problems, I came out.”
The same scenario of family disapproval happened with almost all self-help groups at their inception. To counter this, newly formed groups organised meetings at the houses of members by turns, so that family members could attend. This facilitated better understanding and gained support for the cause.
The strong presence of peer groups in Manipur and the dynamics that have emerged out of their interactions with one another has resulted in a unique response. There is a deep sense of empathy and shared understanding of the problems, needs and issues of each other that gives a much needed impetus to an otherwise slow response in such a resource-poor setting.
For example, home-based care began as a need-based service in Manipur rather than a programme-based activity. Much before the expression was used, the home-based care initiative started in the state when drug users who had developed opportunistic symptoms of HIV/AIDS were left with no avenues for treatment due to the justified fear of stigma and discrimination. It was then that peer groups came to the fore: visiting each other to give emotional and sometimes financial support, interacting with health care workers known to them – often negotiating and sensitising them to render their expertise.
The informal linkage that was forged between these peer groups of drug users and people living with HIV/AIDS on one hand and health-care workers on the other led to a dynamic end result: the latter became involved and interested in the issue while the former picked up skills like dressing wounds, medication of opportunistic infections and exposure to more knowledge of HIV/AIDS related information (for example, different antiretroviral regimens, drug resistance, availability of HIV-related services in the health sector)
As further substantiation of the life-extending treatment elements in ongoing community responses in Manipur, it may be pointed out that it was only in December 2003, that the then Minister for Health, Shushma Swaraj, announced the decision of the Government to give antiretroviral drugs free of cost to people in six HIV “high prevalence” states of India, including Manipur. This was keeping in line with the World Health Organzation (WHO) initiative of providing free antiretroviral drugs (ARVs) to 3 million people by 2005.
When the treatment program was rolled out in reality in Manipur in April 2004, it had a mere 300 places. The first reactions to the free antiretroviral program was about the number of beneficiaries, but there was an equal and vociferous response to the contents of the program: the fact that there was no consideration or room for people who had been on antiretrovirals on their own earlier, the lack of choice of drug regimens and alternatives in case of drug resistance, and even the criteria for becoming a beneficiary of the program.
Much before the launch of the free antiretroviral roll out, there were pockets of people who were negotiating with their friends based outside Manipur. Health-care givers in the state and medical representatives in order to procure antiretrovirals at subsidised rates and in bulk consignments which would be made accessible to their peer groups.
It was also these peer groups that took a stand regarding the shortcomings in the free antiretroviral roll out through the “GIPA Alliance”: a group comprising six NGOs and 28 self-help groups (of drug users, people living with HIV/AIDS, widows etc) that endorsed greater involvement of people living and affected with HIV/AIDS as a matter of practice rather than theory, by involving them in the process of rendering free antiretrovirals, recognizing their experiences and insights.
Since the dynamics of drug use and HIV/AIDS cannot be separated from one another in the state, it may also be pointed out that the strong peer-based response that exists in Manipur has in a way led to better linkages, more information flow about where to seek treatment and what works, and entry points to treatment services. And when a current drug user gets in touch with such a set up, he/she has the best information and back up support at hand.
Many NGOs have acknowledged the fact that the presence of peers fosters a sense of empowerment and inspiration to service seekers. Also, their experiences have led to better program provisions like including direct observation treatment for TB treatment, effective counseling, home detoxification, community sensitisation (with prohibitionist groups and other pressure agencies), the formation of self-help groups etc.
In a setting like Manipur, where there grass-roots based community responses have filled in the wide gap between what is projected and what is available and accessible, it is clear that the home and community responses to HIV/AIDS has extended and improved and the lives of people living with HIV. These existing initiatives need to be recognized, and it is imperative to build their capacity to scale up their effectiveness.
While the World Health Organisation and the Indian government are trying to make true on their treatment promises, the need of the hour is to strengthen community-based initiatives that are keeping people alive today.
HDN Key Correspondent
Email: correspondents@hdnet.org
(December 2004)
The strong moral views of Manipur’s people have reinforced reactions to people with drug-related HIV/AIDS: criminalisation, ostracism, stigmatisation and rejection. Most HIV/AIDS related cases and issues are seen from the perspective of drug use.
The first HIV/AIDS cases were detected in Manipur in 1989, from a cluster of blood samples collected from injection drug users (IDUs). Since then AIDS has become a public health catastrophe. The latest epidemiological report released by the Manipur State AIDS Control Society (April 2004) puts the number of HIV infections at 17,232 of a total 108,787 blood samples screened, but poor reporting and the lack of proper monitoring tools make it hard to arrive at the exact number of people infected with HIV/AIDS. Most health care workers and service givers in the drugs and HIV/AIDS field agree that the numbers are much higher than those estimated and reported.
The public health infrastructure of Manipur is minimal, and access to the available services is heavily curtailed by poor transportation and communication facilities. A number of private clinics and hospitals cater to the better off. There is thus a huge gap when it comes to drugs or even HIV/AIDS related services in Manipur. There are rampant cases of stigma and discrimination towards people living with HIV/AIDS in the health care system.
Yet Manipur has developed a system of what can best be described as “peer driven responses”. There has been a response from the community of those affected by drug use and/or HIV/AIDS, which has sustained a strong and positive force. The lack of professional skills, finances or even infrastructure notwithstanding, this small state is home to a throbbing pulse of shared experiences and expertise that help keep people living with HIV alive. The lack of proper documentation and publicity skills, however, means that these grass roots endeavours are not properly acknowledged.
There are many living examples of life-extending treatment which have been in place for quite some time and have nothing to do with provision of anti retroviral drugs. These include the way that drug users have rallied and come together to render services covering emotional support, counselling, referrals and linkages to drug related services and care support programs (detoxification, rehabilitation, health related care including home-based care etc).
There are also the various self-help groups which are formed by different peer groups (widows of drug-users, people living with HIV/AIDS, ex-drug users), that give avenues for skill-building exercises for basic sustenance through vocational training in areas such as embroidery, wool knitting, tailoring etc for women, and mushroom cultivation, poultry and pig-raising for men.
These self-help groups ensure the presence of peers in service settings, as counsellors, outreach workers, and care providers. The strength gained through the strong grass-roots activism that is so inherent in the way those affected by drug use and HIV/AIDS have come out as program implementers is shown in their ability to negotiate with “professional” HIV/AIDS related service givers and funding agencies.
The members of these groups have a certain group dynamics among themselves: sharing felt needs and issues, networking with related agencies, training, discussions and small income generation schemes. Self-help group members keep aside appointments for formal meetings and discussions (mostly twice a month) where they plan forthcoming activities and share concerns related to their health. Small amounts of money, ranging from 10 to 20 rupees (less than US$0.50) are put in as subscription fee at every meeting, which is put aside for buying medicines for any member.
Meme (name changed) of Women Care Group, a self-help group of widows of drug users formed though a project undertaken by the Social Awareness Service Organisation (SASO) says: “Even the formation of our group did not happen easily. Because I was the widow of a drug user, my in-laws did not really encourage me to go out of the house. I was scared myself, thinking over what others would say. When I realised there were others like me and that we should get together, if only to share our problems, I came out.”
The same scenario of family disapproval happened with almost all self-help groups at their inception. To counter this, newly formed groups organised meetings at the houses of members by turns, so that family members could attend. This facilitated better understanding and gained support for the cause.
The strong presence of peer groups in Manipur and the dynamics that have emerged out of their interactions with one another has resulted in a unique response. There is a deep sense of empathy and shared understanding of the problems, needs and issues of each other that gives a much needed impetus to an otherwise slow response in such a resource-poor setting.
For example, home-based care began as a need-based service in Manipur rather than a programme-based activity. Much before the expression was used, the home-based care initiative started in the state when drug users who had developed opportunistic symptoms of HIV/AIDS were left with no avenues for treatment due to the justified fear of stigma and discrimination. It was then that peer groups came to the fore: visiting each other to give emotional and sometimes financial support, interacting with health care workers known to them – often negotiating and sensitising them to render their expertise.
The informal linkage that was forged between these peer groups of drug users and people living with HIV/AIDS on one hand and health-care workers on the other led to a dynamic end result: the latter became involved and interested in the issue while the former picked up skills like dressing wounds, medication of opportunistic infections and exposure to more knowledge of HIV/AIDS related information (for example, different antiretroviral regimens, drug resistance, availability of HIV-related services in the health sector)
As further substantiation of the life-extending treatment elements in ongoing community responses in Manipur, it may be pointed out that it was only in December 2003, that the then Minister for Health, Shushma Swaraj, announced the decision of the Government to give antiretroviral drugs free of cost to people in six HIV “high prevalence” states of India, including Manipur. This was keeping in line with the World Health Organzation (WHO) initiative of providing free antiretroviral drugs (ARVs) to 3 million people by 2005.
When the treatment program was rolled out in reality in Manipur in April 2004, it had a mere 300 places. The first reactions to the free antiretroviral program was about the number of beneficiaries, but there was an equal and vociferous response to the contents of the program: the fact that there was no consideration or room for people who had been on antiretrovirals on their own earlier, the lack of choice of drug regimens and alternatives in case of drug resistance, and even the criteria for becoming a beneficiary of the program.
Much before the launch of the free antiretroviral roll out, there were pockets of people who were negotiating with their friends based outside Manipur. Health-care givers in the state and medical representatives in order to procure antiretrovirals at subsidised rates and in bulk consignments which would be made accessible to their peer groups.
It was also these peer groups that took a stand regarding the shortcomings in the free antiretroviral roll out through the “GIPA Alliance”: a group comprising six NGOs and 28 self-help groups (of drug users, people living with HIV/AIDS, widows etc) that endorsed greater involvement of people living and affected with HIV/AIDS as a matter of practice rather than theory, by involving them in the process of rendering free antiretrovirals, recognizing their experiences and insights.
Since the dynamics of drug use and HIV/AIDS cannot be separated from one another in the state, it may also be pointed out that the strong peer-based response that exists in Manipur has in a way led to better linkages, more information flow about where to seek treatment and what works, and entry points to treatment services. And when a current drug user gets in touch with such a set up, he/she has the best information and back up support at hand.
Many NGOs have acknowledged the fact that the presence of peers fosters a sense of empowerment and inspiration to service seekers. Also, their experiences have led to better program provisions like including direct observation treatment for TB treatment, effective counseling, home detoxification, community sensitisation (with prohibitionist groups and other pressure agencies), the formation of self-help groups etc.
In a setting like Manipur, where there grass-roots based community responses have filled in the wide gap between what is projected and what is available and accessible, it is clear that the home and community responses to HIV/AIDS has extended and improved and the lives of people living with HIV. These existing initiatives need to be recognized, and it is imperative to build their capacity to scale up their effectiveness.
While the World Health Organisation and the Indian government are trying to make true on their treatment promises, the need of the hour is to strengthen community-based initiatives that are keeping people alive today.
HDN Key Correspondent
Email: correspondents@hdnet.org
(December 2004)
posted by AIDS-Care-Watch at 6:21 pm
0 comments
