The Chaos Within... within

As I piled six of my team into the back seat of Mikey's Maruti 800 I was conscious of the pressure the little tires were under. We were driving back from the crematorium where face number sixteen had just been swallowed by the electric oven. The wife's frenzied wailing, the children's ( a little boy and a little girl) shock and confusion and the swiftness of disposal weighed upon all of us.

We just lost another client. Another client that should not have been lost.

He was at Sassoon hospital and required ART but the hospital refused to begin the treatment until all the tests were carried out. This included a CD4 test to check if he required ART... the hospital however had run out of CD4 test kits. Sorry, there will be a delay.

We carried out the required tests (including a CT scan) and our doctor, Dr. Madhu Oswal started him on ART on Tuesday. The CD4 count was yet to be done, the CD4 count that we would have had to pay Rs.600 for because Sassoon claimed they had no kits until Tuesday morning when Dr. Madhu called them and they admitted that the kits had 'just' arrived.

Any physician would have done the same, i.e. start him on ART... any physician who knew what HIV is and how it affects our body.

We were too late.

NACP III the comprehensive National AIDS Control Programme has promised free CD4 tests from April onwards, the Clinton Foundation is working hard for free ART for kids and there is much hope for PLHIV in our city... much hope.

Yet are these plans of mice and men deliverable in the real world? Are test kits going to dry up? Are ART shipments to Pune going to be delayed by the monsoons again? Are excuses going to be made and phone calls remain unaswered as the rings reverberate in an empty Govt. ART Centre because the luch hour has extended to two hours and the queue has extended to 80 people... people from the rural communities that know little of Pune other than how to find themselves to Sassoon Hospital, this broken beacon of hope that does its best to deliver... we hope and they hope... we all fucking hope.

And how much can we leave to hope, that appears to be so intermingled with fate that while not strictly an oxymoron it smells suspiciously like one - hopeful fate, or is that fateful hope?

The family of our client that was bundled into the rickshaw outside the crematorium chugged of in a mist of this bewilderment that hope and fate brings.

The chaos within them... within us, who are left standing by mummified bodies that are swallowed by large electric ovens will continue to wrench at us.

Today the guy who operates the machine looked at me and smiled like I was an old friend. An old friend that he meets only at funerals, and so the smile of recognition was tempered with, 'I shouldn't really smile here, but Hi anyway'... and then he gently shepherded us out as the fire went onto to do its duty. I was about to ask him how many ovens he does a day... but no words were possible and soon we were in the Maruti 800 driving home with the little tires under more pressure than they are used to... or were supposed to handle.

Maya and I spoke again of what possible ways forward exist for us with Sassoon, and how the death there for PLHIV appears to be a matter of course... questions we don't know the answer to, but questions that help us work through the chaos within... to somehow find a way forward for us all.

Maya always leaves with me from the crematorium. Both of us will have it no other way. I see fear in her eyes, and she sees fear in mine. Fear not of death but of the suffering that continues to assail PLHIV in our city of Pune.

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.