The Chaos Within - Face Number Fifteen
Face number fifteen.
That is what I thought about as I walked home last week the night Savita died.
When a Sahara care worker tragically died earlier this week I realised that we can't even begin to count the faces that affect us.
A DISHA client dies, a Sahara care worker falls in the line of duty.
The 'numbers have faces' approach that we employ has helped us stay focused on the PLHIV we know and love and serve and not get overawed by statistics... yet, we have fast realised that we cannot and must not limit ourselves to Tadiwala Road and the PLHIV that live here - they remain our focus, but IF we are well placed to address the concerns and needs of the wider PLHIV community, and of course the concerns of us in the field, then we have to move beyond our comfort zones of an urban slum community.
This is what we have done with Wake Up Pune to an extent. An attempt to reach as many people as we can, to sensitise a city that can stand together IF it chooses to... yet Wake Up Pune is not just merely a beginning, it will be hollow and empty if as a coalition of NGOs we do not further move outside and beyond ourselves and begin to address issues that are unpalatable to most of us.
Advocacy - buzz word, we all talk about it, but few know how to move forward, and even fewer believe that they have a voice to add to debates that fund conferences and waste vital resources in addressing what they are supposed to address - the need of PLHIV.
Recently we have been following debates on the need for 2nd line Antiretroviral therapy (ART). ART as most us know is crucial to the possibility of life after HIV. In the developing world or South as we are classified, ART regimens are advised only when a PLHIV's CD4 count drops to circa 200 or below. This is to ensure that PLHIV do not start too early and so create resistance to long-term ART... because 1st line ART is long-term... life-long-term!
Adherence is spoken of repeatedly and often PLHIV, especially from socio-economically deprived communities, because of often limited education, are marked as those with low adherence and the ensuing complications.
Explain this: ART (1st line) being recommended as a course of treatment for herpes simplex when the PLHIV's CD4 count is well above 200. It is prescribed akin to a course of antibiotics and will undoubtedly clear up the Herpes simplex almost immediately... but what happens when the 'course' ends?
Why are doctors ignorant? Is there any regulation at all? Whose responsibility is it to regulate and educate the medical fraternity?
One riposte maybe that doctors who are ignorant enough to prescribe ART as a course of medicine are incompetent as any doctor worth his or her salt knows better, having attended med schools worth their salt... however not all the doctors with an urban slum community practice have this saltiness... and the patients, for whom the doctor is practically divine, knows no better.
What ensues as a result is that some in the medical fraternity with less salt than others are creating a generation of PLHIV that will require 2nd line ART because their bodies will soon begin to resist 1st line ART due to this - as far as we know and hope, little practiced - course of ART that some doctors recommend.
Yes we can and will begin sensitisation programmes for the local doctors in our communities. And others. Yes we will continue to educate our PLHIV on what ART is and how it works. Yes... but grassroots NGOs can do only so much.
In the west I often here of how HIV is now something people live with and is no longer something people die of...
Face number fifteen for me last week was over one hundred faces for Sahara since DISHA tied up with them in June 2005. It is 400,000 faces in India in 2005.
Universal access to quality medication being a human right is a fight for sure... but in fighting for this, let's take a look at the issues that surround ART and more especially HIV. Understand them - understand how silence, and ignorance and fear feed stigma and discrimination, understand how they are an obstacle not just to a sick PLHIV, but are a driver for sickness to visit more PLHIV every moment... moment. And then, only then must we move forward.
We have to make something REAL happen.
Until then the faces will continue to add to our lists and walk home with us at night.
That is what I thought about as I walked home last week the night Savita died.
When a Sahara care worker tragically died earlier this week I realised that we can't even begin to count the faces that affect us.
A DISHA client dies, a Sahara care worker falls in the line of duty.
The 'numbers have faces' approach that we employ has helped us stay focused on the PLHIV we know and love and serve and not get overawed by statistics... yet, we have fast realised that we cannot and must not limit ourselves to Tadiwala Road and the PLHIV that live here - they remain our focus, but IF we are well placed to address the concerns and needs of the wider PLHIV community, and of course the concerns of us in the field, then we have to move beyond our comfort zones of an urban slum community.
This is what we have done with Wake Up Pune to an extent. An attempt to reach as many people as we can, to sensitise a city that can stand together IF it chooses to... yet Wake Up Pune is not just merely a beginning, it will be hollow and empty if as a coalition of NGOs we do not further move outside and beyond ourselves and begin to address issues that are unpalatable to most of us.
Advocacy - buzz word, we all talk about it, but few know how to move forward, and even fewer believe that they have a voice to add to debates that fund conferences and waste vital resources in addressing what they are supposed to address - the need of PLHIV.
Recently we have been following debates on the need for 2nd line Antiretroviral therapy (ART). ART as most us know is crucial to the possibility of life after HIV. In the developing world or South as we are classified, ART regimens are advised only when a PLHIV's CD4 count drops to circa 200 or below. This is to ensure that PLHIV do not start too early and so create resistance to long-term ART... because 1st line ART is long-term... life-long-term!
Adherence is spoken of repeatedly and often PLHIV, especially from socio-economically deprived communities, because of often limited education, are marked as those with low adherence and the ensuing complications.
Explain this: ART (1st line) being recommended as a course of treatment for herpes simplex when the PLHIV's CD4 count is well above 200. It is prescribed akin to a course of antibiotics and will undoubtedly clear up the Herpes simplex almost immediately... but what happens when the 'course' ends?
Why are doctors ignorant? Is there any regulation at all? Whose responsibility is it to regulate and educate the medical fraternity?
One riposte maybe that doctors who are ignorant enough to prescribe ART as a course of medicine are incompetent as any doctor worth his or her salt knows better, having attended med schools worth their salt... however not all the doctors with an urban slum community practice have this saltiness... and the patients, for whom the doctor is practically divine, knows no better.
What ensues as a result is that some in the medical fraternity with less salt than others are creating a generation of PLHIV that will require 2nd line ART because their bodies will soon begin to resist 1st line ART due to this - as far as we know and hope, little practiced - course of ART that some doctors recommend.
Yes we can and will begin sensitisation programmes for the local doctors in our communities. And others. Yes we will continue to educate our PLHIV on what ART is and how it works. Yes... but grassroots NGOs can do only so much.
In the west I often here of how HIV is now something people live with and is no longer something people die of...
Face number fifteen for me last week was over one hundred faces for Sahara since DISHA tied up with them in June 2005. It is 400,000 faces in India in 2005.
Universal access to quality medication being a human right is a fight for sure... but in fighting for this, let's take a look at the issues that surround ART and more especially HIV. Understand them - understand how silence, and ignorance and fear feed stigma and discrimination, understand how they are an obstacle not just to a sick PLHIV, but are a driver for sickness to visit more PLHIV every moment... moment. And then, only then must we move forward.
We have to make something REAL happen.
Until then the faces will continue to add to our lists and walk home with us at night.
posted by Deep Griha at 12:51 am
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