ACW Interview with Mr K. K. Abraham, President of Indian Network for People Living with HIV/AIDS (INP+),
INP + is based in Chennai, India
ACW: The vast majority of people living with HIV/AIDS (PWHA) do not have access to antiretroviral (ARV) drugs. Can you comment on current progress in scaling up of ARV provision in your local context? Are ARVs available? What are the consequences of the delay in expanding ARV access?
KK: India has over 5.3 million people estimated to be HIV positive out of which only five percent know their HIV status. World AIDS Day 2003, the Government of India (GOI) announced a strong policy commitment to provide antiretroviral therapy (ART) to 100,000 people with HIV/AIDS, with implementation starting on 1st April 2004. The global fund grant for the government is for enabling 137,000 people living with HIV be put on ARV in the next five years.
The primary responsibility for meeting the target lies with the National AIDS Control Organization (NACO) and the State AIDS Control Societies (SACS) with support WHO, UNAIDS and a wide partnership also committed to rapid expansion of access to AIDS treatment. But in reality only 7000 odd people who are living with HIV are accessing ARV from the government ARV roll out centers. There are lots of gaps like:
· No clear plans regarding how to sustain and scale up the national ARV roll out initiated in April 1, 2004.
· There is no clear strategy for procuring ARVs once the drugs supplied by WHO is over so that people who are already put on antiretroviral will continue to receive them.
· Negotiations with the Indian pharmaceutical industries to bring down the prices further with in India have not been started yet though such meetings were announced last year.
· No Systems and structures in place to reduce the impact of TRIPS agreement/intellectual property rights/patent issues on people living with HIV.
· ARV rolls out being a central-sponsored program no ownership from the state governments in terms of political commitment as well as resource allocations.
· Lack of clarity in terms of how to ensure equity in access to antiretrovirals by PLHA belonging to marginalized groups like sex workers, injecting drug users or men who have sex with men.
· Minimal or no efforts in working with the various marginalized groups like sex workers, injecting drug users or men who have sex with men to reach out to PLHA belonging to those groups who need treatment and treatment education.
· Less attention to the treatment needs of PLHA in ‘low/medium prevalence states’ since national ARV roll out is mainly implemented in ‘high-prevalence states’.
· Shortage of drugs for opportunistic infections (example: Fluconazole for Cryptococcal meningitis) and lack of drugs for some opportunistic medications (example: Ganciclovir for CMV retinitis) in even the major pubic hospitals even though government of India has a policy to treat all opportunistic infections that occur in PLHA.
· No guideline and access for already who are resisted to first line medications.
The delay in expanding ARV will result in rapid progression of many people living with HIV to AIDS. Serious localized epidemics in several states clearly show that the problem has the potential to reach huge proportions that can impact social and economies significantly in India
ACW: Comprehensive HIV/AIDS care ranges from HIV counseling and testing services through to palliative care for those close to the end of life. Aside from ARVs, which other care and treatment options do you think are likely to add years or quality to someone's life?
KK: This answer is an obvious one that people would want to access the entire spectrum of care continuum if it is available and is affordable. It is about what each of them need at the point of time in their life. From counseling to peer support to palliative care it should be available on the basis of the needs and each of it has its own significance in adding quality to life of that person.
ACW: One of the main differences between rich and poor regions in relation to HIV/AIDS is a more rapid progression towards AIDS-related illness in developing countries. What do you think might be the reasons for this difference? Can you recommend any measures that may alleviate this more rapid progression?
KK: Again the answer is obvious and studied many a time and relation to poverty and HIV/AIDS has been established.
Most common difference is income inequality, and lack of economic stability. Support from the workplace for people living with HIV, and support for continuous income for families, insurance schemes benefiting people who are not able to work would benefit the community of people living with HIV.
Lack of access to clean drinking water and sanitation, which are cause of many water borne infections causing deterioration of health for people living with HIV, here people living with HIV also are prone to other infections not just the opportunistic infection.
Poor nutrition is the other reason. Food is the crucial requirement as it has been proved that a person who has HIV can remain healthy for many years if he or she has a good standard of nutrition, which is made available for a person adequately and in a continued manner.
Lack of access to health care facilities in areas accessible by the people living mainly in rural areas.
ACW: People living with HIV have a much higher lifetime risk of developing a range of common, potentially fatal, and yet treatable diseases, such as TB and meningitis. Is adequate or appropriate attention being given at the national or international level to preventing and treating these conditions? Would greater attention significantly add years or quality to PWHAs lives?
KK: Adequate attention has not been given for treating opportunistic infections at the national, even though there is an understanding that treating opportunistic infection will enhance the health of people living with HIV. Though the drugs are supposed to be freely available at the government hospitals people accessing them find it very difficult and common answer they receive would ‘out of stock.’ Not able to access services with in the reach of people is a main reason behind people not able to treat the opportunistic infections. Emphasis should be on maintaining/strengthening basic primary health care services. Training the doctors and nurses in basic HIV management is also part of the overall management of HIV related opportunistic infection.
ACW: Many - if not almost all - HIV-related interventions are concerned with doing things or providing material for people. In what ways do you think affected people can be empowered to take more control of their own health? What impact do you think this would have on their day-to-day lives?
KK: Living with HIV every individual has gone through a period of illness and time when they need moral support. Key to understanding positive living is to have belief in ‘living’ and accept life after infection as positive beginning. This acceptance is a difficult process for people. A person going through this particular transition needs to be supported to be self reliant and confident. At this stage making people living with HIV dependent entirely on charity is patronizing, and people stop living and are waiting to die and would stop taking an effort to live.
INP+ believes in making them self reliant and confident, which will help people adhere to the concept of positive living – physical and mental wellbeing. This will enable people take responsibility of their own life, feel wanted, be productive and will be involved in decision making both about their own life as well as take charge of their families. This way there would be more advocates in the community than people who tend to keep quiet because they are afraid they will lose out on their material benefit. Having said that there are people below poverty line, who are sick that they are not able to work, who needs support both moral and material to tide over their difficult times.
ACW: A number of initiatives and policy activities in 2005 - for example the Millennium Development Goals (MDG) review in September, pressure among G8 governments to accelerate debt relief and increase overseas development aid, and the final benchmark of the WHO 3x5 initiative - suggest that this year may be a crucial 'tipping point' that leads to greater attention to development in general and HIV/AIDS in particular. What is your feeling about this? Do you consider 2005 to be a significant year? What are your hopes?
KK: Our goal is that all people living with HIV/AIDS in India has an access to affordable treatment, be able to make informed decisions about their treatment plans and have access to antiretroviral and drugs for opportunistic infections. There have been significant changes in the international and national scenario with treatment in the last couple of year, but a number as larges as 5.3million is daunting and our hopes and feelings take a swing between the very hopeful and hopeless situation. All the international and national level decision can only be fruitful if its actual implementation trickles down to people living with HIV.
(ends)
ACW: The vast majority of people living with HIV/AIDS (PWHA) do not have access to antiretroviral (ARV) drugs. Can you comment on current progress in scaling up of ARV provision in your local context? Are ARVs available? What are the consequences of the delay in expanding ARV access?
KK: India has over 5.3 million people estimated to be HIV positive out of which only five percent know their HIV status. World AIDS Day 2003, the Government of India (GOI) announced a strong policy commitment to provide antiretroviral therapy (ART) to 100,000 people with HIV/AIDS, with implementation starting on 1st April 2004. The global fund grant for the government is for enabling 137,000 people living with HIV be put on ARV in the next five years.
The primary responsibility for meeting the target lies with the National AIDS Control Organization (NACO) and the State AIDS Control Societies (SACS) with support WHO, UNAIDS and a wide partnership also committed to rapid expansion of access to AIDS treatment. But in reality only 7000 odd people who are living with HIV are accessing ARV from the government ARV roll out centers. There are lots of gaps like:
· No clear plans regarding how to sustain and scale up the national ARV roll out initiated in April 1, 2004.
· There is no clear strategy for procuring ARVs once the drugs supplied by WHO is over so that people who are already put on antiretroviral will continue to receive them.
· Negotiations with the Indian pharmaceutical industries to bring down the prices further with in India have not been started yet though such meetings were announced last year.
· No Systems and structures in place to reduce the impact of TRIPS agreement/intellectual property rights/patent issues on people living with HIV.
· ARV rolls out being a central-sponsored program no ownership from the state governments in terms of political commitment as well as resource allocations.
· Lack of clarity in terms of how to ensure equity in access to antiretrovirals by PLHA belonging to marginalized groups like sex workers, injecting drug users or men who have sex with men.
· Minimal or no efforts in working with the various marginalized groups like sex workers, injecting drug users or men who have sex with men to reach out to PLHA belonging to those groups who need treatment and treatment education.
· Less attention to the treatment needs of PLHA in ‘low/medium prevalence states’ since national ARV roll out is mainly implemented in ‘high-prevalence states’.
· Shortage of drugs for opportunistic infections (example: Fluconazole for Cryptococcal meningitis) and lack of drugs for some opportunistic medications (example: Ganciclovir for CMV retinitis) in even the major pubic hospitals even though government of India has a policy to treat all opportunistic infections that occur in PLHA.
· No guideline and access for already who are resisted to first line medications.
The delay in expanding ARV will result in rapid progression of many people living with HIV to AIDS. Serious localized epidemics in several states clearly show that the problem has the potential to reach huge proportions that can impact social and economies significantly in India
ACW: Comprehensive HIV/AIDS care ranges from HIV counseling and testing services through to palliative care for those close to the end of life. Aside from ARVs, which other care and treatment options do you think are likely to add years or quality to someone's life?
KK: This answer is an obvious one that people would want to access the entire spectrum of care continuum if it is available and is affordable. It is about what each of them need at the point of time in their life. From counseling to peer support to palliative care it should be available on the basis of the needs and each of it has its own significance in adding quality to life of that person.
ACW: One of the main differences between rich and poor regions in relation to HIV/AIDS is a more rapid progression towards AIDS-related illness in developing countries. What do you think might be the reasons for this difference? Can you recommend any measures that may alleviate this more rapid progression?
KK: Again the answer is obvious and studied many a time and relation to poverty and HIV/AIDS has been established.
Most common difference is income inequality, and lack of economic stability. Support from the workplace for people living with HIV, and support for continuous income for families, insurance schemes benefiting people who are not able to work would benefit the community of people living with HIV.
Lack of access to clean drinking water and sanitation, which are cause of many water borne infections causing deterioration of health for people living with HIV, here people living with HIV also are prone to other infections not just the opportunistic infection.
Poor nutrition is the other reason. Food is the crucial requirement as it has been proved that a person who has HIV can remain healthy for many years if he or she has a good standard of nutrition, which is made available for a person adequately and in a continued manner.
Lack of access to health care facilities in areas accessible by the people living mainly in rural areas.
ACW: People living with HIV have a much higher lifetime risk of developing a range of common, potentially fatal, and yet treatable diseases, such as TB and meningitis. Is adequate or appropriate attention being given at the national or international level to preventing and treating these conditions? Would greater attention significantly add years or quality to PWHAs lives?
KK: Adequate attention has not been given for treating opportunistic infections at the national, even though there is an understanding that treating opportunistic infection will enhance the health of people living with HIV. Though the drugs are supposed to be freely available at the government hospitals people accessing them find it very difficult and common answer they receive would ‘out of stock.’ Not able to access services with in the reach of people is a main reason behind people not able to treat the opportunistic infections. Emphasis should be on maintaining/strengthening basic primary health care services. Training the doctors and nurses in basic HIV management is also part of the overall management of HIV related opportunistic infection.
ACW: Many - if not almost all - HIV-related interventions are concerned with doing things or providing material for people. In what ways do you think affected people can be empowered to take more control of their own health? What impact do you think this would have on their day-to-day lives?
KK: Living with HIV every individual has gone through a period of illness and time when they need moral support. Key to understanding positive living is to have belief in ‘living’ and accept life after infection as positive beginning. This acceptance is a difficult process for people. A person going through this particular transition needs to be supported to be self reliant and confident. At this stage making people living with HIV dependent entirely on charity is patronizing, and people stop living and are waiting to die and would stop taking an effort to live.
INP+ believes in making them self reliant and confident, which will help people adhere to the concept of positive living – physical and mental wellbeing. This will enable people take responsibility of their own life, feel wanted, be productive and will be involved in decision making both about their own life as well as take charge of their families. This way there would be more advocates in the community than people who tend to keep quiet because they are afraid they will lose out on their material benefit. Having said that there are people below poverty line, who are sick that they are not able to work, who needs support both moral and material to tide over their difficult times.
ACW: A number of initiatives and policy activities in 2005 - for example the Millennium Development Goals (MDG) review in September, pressure among G8 governments to accelerate debt relief and increase overseas development aid, and the final benchmark of the WHO 3x5 initiative - suggest that this year may be a crucial 'tipping point' that leads to greater attention to development in general and HIV/AIDS in particular. What is your feeling about this? Do you consider 2005 to be a significant year? What are your hopes?
KK: Our goal is that all people living with HIV/AIDS in India has an access to affordable treatment, be able to make informed decisions about their treatment plans and have access to antiretroviral and drugs for opportunistic infections. There have been significant changes in the international and national scenario with treatment in the last couple of year, but a number as larges as 5.3million is daunting and our hopes and feelings take a swing between the very hopeful and hopeless situation. All the international and national level decision can only be fruitful if its actual implementation trickles down to people living with HIV.
(ends)
posted by AIDS-Care-Watch at 2:38 pm
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