We have some pretty exciting things that may bear fruit in the next few weeks at Jeevan Sahara Kendra.
My lips are sealed - at this point at least. Do stay tuned!
But whatever the developments may be - one thing is sure: HIV as we know it has not gone away.
Though it has dropped off the funding priorities of most international agencies, and though the press has a 'ho-hum' approach to the whole matter - we are still seeing lives that have been devastated by the disease in various ways.
Let me count some of them:
1. A man who has worked in the gulf - amassing a small fortune for his family - is now alone in a room in his appartment. He has HIV and has hardly any CD4 cells left (his last count was only 8 per cubic cm - a healthy person has between 900-1200 or so). But more than the sickness - he is starved for love as his wife and three daughters want very little to do with him. And so he is alone in his room.
2. Another man is under psychiatric care in a large hospital. He had not been doing well on his medication and went to a 'prophetess' - a young girl who told him to throw away his medicines and believe that God would heal him. Needless to say, the hoped-for-healing remained just that. When he started back on his meds, his mind started to unhinge. His wife is now with him in the hospital - trying to stabilize him.
3. A woman recently found out that she was HIV positive when she started falling sick. Her husband had died many years ago - but she did not think she had it. Now she knows she does.
4. A man called up asking for help as his mother needs further hospitalisation. She is at a place where most of their money has been spent on the treatment and she is not getting better.
5. A young man was just about to go to the gulf. The routine medical check-up found out something that neither he nor his family expected. He is HIV positive. They are floored and wondering what to do for his future - and what to do with their shattered dreams.
6. A man called me up today worried because he may have HIV. He told me that he had a sexual contact a month ago and had been using two condoms and wanted to know whether he may have the disease. It was surreal for me to be talking to him - not knowing where he was calling from. Last month I talked to a man who was on a ship off the coast of Nigeria.
7. Our team did two testing camps along with organisations who reach out to women in prostitution (yes I am using the old-fashioned word). Sadly of 8 the 29 women tested were HIV positive. This is 28% - much higher than the 6% figure that the government has for women who sell sex in India.
8. A young teenage girl found out last year that she was also HIV positive. Her alcoholic father has not been taking his medicines regularly - preferring to self-medicate with his bottle. The girl has manifested a variety of abnormal behaviour - though the last few weeks have seen her come back to some kind of normalcy.
9. A veteran HIV activist came to the clinic today - she is on 'second-line' therapy from the government - but the main Government site in Mumbai where these medicines are given to people with HIV who are not responding to the basic meds anymore have been in severe medication shortages over the last 3 months. So the 'answer' is to give patients only 4-10 days of medications - and then have them come back again. It is hard enough to go all the way there once a month - now they have to do so multiple times - taking leave - missing work and family responsibilities. But most cannot buy the medications on their own because of the high cost.
10. A little boy comes everyday with his mother to our JSK clinic. He is 11 years old - but looks like he is 6. He comes because he has multi-drug TB along with his HIV. We are giving him medications every day for his 2 year course of MDRTB meds, which our friends from Mediecines Sans Frontieres have alloted for this boy. His father is unstable, so it is the mother who bravely brings this little boy every day for his treatment.
And so the stories go on.
Every person precious.
Often in situations that defy a simple solution.
Where are all the people that I have mentioned above?
Well, they are all around us. But hidden - because of the stigma that is still spiralled around the disease.
And because of something else - I think that in India we have now moved from the scare-mongering days of the early 1990s (HIV is everywhere - we will soon overtake Africa etc) to a point today where we have slipped into some kind of underground of apathy tinged with the same-old-same-old fear and loathing of the disease. "Another topic please? This one is too morbid for me"
There is clearly still work to be done. We at Jeevan Sahara Kendra are part of it - and will remain part of it for the foreseeable future it seems.
So we press on.
With God's help change is possible.
Every single person affected by this disease, every family that is going through the wringer, every seemingly impossible situation (and there are so many of them) - each one is also an opportunity for grace. And mercy. And change.
My lips are sealed - at this point at least. Do stay tuned!
But whatever the developments may be - one thing is sure: HIV as we know it has not gone away.
Though it has dropped off the funding priorities of most international agencies, and though the press has a 'ho-hum' approach to the whole matter - we are still seeing lives that have been devastated by the disease in various ways.
Let me count some of them:
1. A man who has worked in the gulf - amassing a small fortune for his family - is now alone in a room in his appartment. He has HIV and has hardly any CD4 cells left (his last count was only 8 per cubic cm - a healthy person has between 900-1200 or so). But more than the sickness - he is starved for love as his wife and three daughters want very little to do with him. And so he is alone in his room.
2. Another man is under psychiatric care in a large hospital. He had not been doing well on his medication and went to a 'prophetess' - a young girl who told him to throw away his medicines and believe that God would heal him. Needless to say, the hoped-for-healing remained just that. When he started back on his meds, his mind started to unhinge. His wife is now with him in the hospital - trying to stabilize him.
3. A woman recently found out that she was HIV positive when she started falling sick. Her husband had died many years ago - but she did not think she had it. Now she knows she does.
4. A man called up asking for help as his mother needs further hospitalisation. She is at a place where most of their money has been spent on the treatment and she is not getting better.
5. A young man was just about to go to the gulf. The routine medical check-up found out something that neither he nor his family expected. He is HIV positive. They are floored and wondering what to do for his future - and what to do with their shattered dreams.
6. A man called me up today worried because he may have HIV. He told me that he had a sexual contact a month ago and had been using two condoms and wanted to know whether he may have the disease. It was surreal for me to be talking to him - not knowing where he was calling from. Last month I talked to a man who was on a ship off the coast of Nigeria.
7. Our team did two testing camps along with organisations who reach out to women in prostitution (yes I am using the old-fashioned word). Sadly of 8 the 29 women tested were HIV positive. This is 28% - much higher than the 6% figure that the government has for women who sell sex in India.
8. A young teenage girl found out last year that she was also HIV positive. Her alcoholic father has not been taking his medicines regularly - preferring to self-medicate with his bottle. The girl has manifested a variety of abnormal behaviour - though the last few weeks have seen her come back to some kind of normalcy.
9. A veteran HIV activist came to the clinic today - she is on 'second-line' therapy from the government - but the main Government site in Mumbai where these medicines are given to people with HIV who are not responding to the basic meds anymore have been in severe medication shortages over the last 3 months. So the 'answer' is to give patients only 4-10 days of medications - and then have them come back again. It is hard enough to go all the way there once a month - now they have to do so multiple times - taking leave - missing work and family responsibilities. But most cannot buy the medications on their own because of the high cost.
10. A little boy comes everyday with his mother to our JSK clinic. He is 11 years old - but looks like he is 6. He comes because he has multi-drug TB along with his HIV. We are giving him medications every day for his 2 year course of MDRTB meds, which our friends from Mediecines Sans Frontieres have alloted for this boy. His father is unstable, so it is the mother who bravely brings this little boy every day for his treatment.
And so the stories go on.
Every person precious.
Often in situations that defy a simple solution.
Where are all the people that I have mentioned above?
Well, they are all around us. But hidden - because of the stigma that is still spiralled around the disease.
And because of something else - I think that in India we have now moved from the scare-mongering days of the early 1990s (HIV is everywhere - we will soon overtake Africa etc) to a point today where we have slipped into some kind of underground of apathy tinged with the same-old-same-old fear and loathing of the disease. "Another topic please? This one is too morbid for me"
There is clearly still work to be done. We at Jeevan Sahara Kendra are part of it - and will remain part of it for the foreseeable future it seems.
So we press on.
With God's help change is possible.
Every single person affected by this disease, every family that is going through the wringer, every seemingly impossible situation (and there are so many of them) - each one is also an opportunity for grace. And mercy. And change.
Ijust wanted to tell you that for the past week I have been praying very specifically for you both and the work you do.
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