Stock out
Two words that don't mean much to most of us.
Because most of us do not have to take medication each day to keep our resident HIV at bay - and let our immune system still function close to how God intended it to be.
Taking the medications has its own challenges. The sobering truth is that unless the meds are taken at a 95% adherence level the chances of viral resistance are high. This means that you could 'afford' to miss 3 doses a month if you are taking the pills twice a day. Across the world - in both 'rich' and 'poor' countries - adherence rates for long-term medications are a sobering 50-80% on average.
Unsurprisingly, we know that most of our Positive Friends who are taking the medicines long-term face similar challenges. A lot of our work with JSK right now is focused on helping them take their medications regularly. We aim at 100% - and so if a person does miss the odd pill in the month it will still work. Our real challenge are our friends who have a pattern of being irregular with their meds.
But now we have a new challenge. And its a very serious one.
A number of our long-term HIV Positive Friends are at a point where their virus has become resistant to the basic Anti-Retroviral Therapy (ART) drugs. The government, which gives the ART free, also provides free 'second-line' ART medications. But since these are far more expensive, these drugs are only given at a few select centres. In Mumbai the main govt. centre for second-line ART is at the JJ Hospital in Byculla. It has in the past been hard to 'get on' the second-line therapy - but most of those who have needed it have received it. The problem for them has been the long travel to the JJ hospital in south Mumbai once a month to get their monthly-supply.
Over the past few months we have had disturbing stories.
The stocks of 2nd line medications are low. So instead of giving a month's worth of medications - those who need these life-saving meds are given just 10 days' worth and told to come back. That means 3 visits a month.
And it gets worse. We have some of our Positive Friends who were only given 4 days worth and told to come back. And that too - the medications are given loose. One of our long-term patients came to our Jeevan Sahara Kendra clinic with this:
The Mumbai AIDS Forum has been taking up this issue and held a rally last month to protest these shortages.
The press covered the story and the officials said that the issue will be taken care of 'at the earliest' - but the damage is being done.
When drugs are not there - it is inevitable that adherence rates will drop.
And after the 'second-line' medications stop working... then what?
A basic fact of HIV drug treatment is that once a drug stops working, you have to replace it with a completely different kind of drug. You cannot just amp up the dosage (like some of the diabetes drugs) and hope for a better outcome. Each new set of meds is a quantum more expensive - and usually more side-effects to boot.
So here is the grist of it - People living with HIV need to have their medications. It needs to be free and life-long. We have to see that they get the support and encouragement to take the pills daily - without fail - in order for the effectiveness of the meds to keep their resident HIV at bay.
But in order to do so, they need the drugs. And they need access to the meds in such a way that they don't lose their jobs because of repeated visits a month to the government centres. That they don't lose their health because of the strain of long travel. That they don't lose their adherence because of the challenge of even getting the meds regularly, let alone taking them on time.
We are glad that our National AIDS Control Organisation is providing ART medications free - even the second-line ART drugs. But we know for a fact that the situation in Mumbai is clearly one where the system has to improve.
Besides the issues of logistics which clearly need to be sorted out - how about letting Jeevan Sahara Kendra partner in providing the medications at our centre here in Thane?
Your thoughts and prayers on this are most appreciated.
Two words that don't mean much to most of us.
Because most of us do not have to take medication each day to keep our resident HIV at bay - and let our immune system still function close to how God intended it to be.
Taking the medications has its own challenges. The sobering truth is that unless the meds are taken at a 95% adherence level the chances of viral resistance are high. This means that you could 'afford' to miss 3 doses a month if you are taking the pills twice a day. Across the world - in both 'rich' and 'poor' countries - adherence rates for long-term medications are a sobering 50-80% on average.
Unsurprisingly, we know that most of our Positive Friends who are taking the medicines long-term face similar challenges. A lot of our work with JSK right now is focused on helping them take their medications regularly. We aim at 100% - and so if a person does miss the odd pill in the month it will still work. Our real challenge are our friends who have a pattern of being irregular with their meds.
But now we have a new challenge. And its a very serious one.
A number of our long-term HIV Positive Friends are at a point where their virus has become resistant to the basic Anti-Retroviral Therapy (ART) drugs. The government, which gives the ART free, also provides free 'second-line' ART medications. But since these are far more expensive, these drugs are only given at a few select centres. In Mumbai the main govt. centre for second-line ART is at the JJ Hospital in Byculla. It has in the past been hard to 'get on' the second-line therapy - but most of those who have needed it have received it. The problem for them has been the long travel to the JJ hospital in south Mumbai once a month to get their monthly-supply.
Over the past few months we have had disturbing stories.
The stocks of 2nd line medications are low. So instead of giving a month's worth of medications - those who need these life-saving meds are given just 10 days' worth and told to come back. That means 3 visits a month.
And it gets worse. We have some of our Positive Friends who were only given 4 days worth and told to come back. And that too - the medications are given loose. One of our long-term patients came to our Jeevan Sahara Kendra clinic with this:
He is showing 4 days of second-line medications - which he was given in an old box of a 'first-line' medication.
Now we all know that once you start giving drugs loose the immediate question about quality comes to mind. And if a patient doubts the quality of her medications - then their efficacy will suffer.
And then there is the issue of going every 4 days to get medications. Who has the luxury of doing a Mumbai Darshan every week? We know of Positive People losing their jobs because of their frequent absences to get medications. We have people coming from outside the city to get their meds too.
When drugs are not there - it is inevitable that adherence rates will drop.
And after the 'second-line' medications stop working... then what?
A basic fact of HIV drug treatment is that once a drug stops working, you have to replace it with a completely different kind of drug. You cannot just amp up the dosage (like some of the diabetes drugs) and hope for a better outcome. Each new set of meds is a quantum more expensive - and usually more side-effects to boot.
So here is the grist of it - People living with HIV need to have their medications. It needs to be free and life-long. We have to see that they get the support and encouragement to take the pills daily - without fail - in order for the effectiveness of the meds to keep their resident HIV at bay.
But in order to do so, they need the drugs. And they need access to the meds in such a way that they don't lose their jobs because of repeated visits a month to the government centres. That they don't lose their health because of the strain of long travel. That they don't lose their adherence because of the challenge of even getting the meds regularly, let alone taking them on time.
We are glad that our National AIDS Control Organisation is providing ART medications free - even the second-line ART drugs. But we know for a fact that the situation in Mumbai is clearly one where the system has to improve.
Besides the issues of logistics which clearly need to be sorted out - how about letting Jeevan Sahara Kendra partner in providing the medications at our centre here in Thane?
Your thoughts and prayers on this are most appreciated.
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