Wall of Life

March 6, 2014

Young people are the hope of tomorrow!

At Jeevan Sahara Kendra we are thrilled that since August 2013, our staff have facilitated two adolescent groups.  The first one was called “Character Formation” and was for young people aged 11-14.  The second group focussed on “Life Skills” and was for youth 15-20 years old.  Meeting on public holidays, the young people had 15 wonderful sessions where they explored the changes that they are going through and worked on understanding making healthy choices in their lives and relationships.

At the end of this first batch of young people, we wanted to do something special – and we did!  Thanks to our dear friends Ilaisa and Shubhra, we had an amazing time on the 27th of February 2014 when 22 young people came together to paint a “Wall of Life” outside the Jeevan Sahara Kendra.

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The work to prepare this started a month before with Ilaisa and Shubhra conceptualising the wall and getting the materials together.

We then had the basic primer and white paint applied and Ilaisa spent almost a week sketching the basic design, which the young people would paint.

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When the big day came, we had lots of happy volunteers – 22 youth showed up – and more came during the day, but we did not have enough brushes and paints for those who wanted to join later.

???????????????????????????????What a joy to see happy hands at work!   Over the course of the day, the white wall took colour as the young artists got to painting.

Our budding Leonardos (or M.F. Hussains) did not want to let go of their paint brushes.  It was with quite a lot of effort that the youth had to be persuaded to come in for lunch!

finished wall with JSK entranceThe final result is wonderful.  The entrance to the Jeevan Sahara Kendra now sports a beautiful mural called “God’s Love Express” where the cheery engine pulls 6 ‘carriages’ which each have a message of hope and life on them.

faithfulness 1Why don’t you come and see the art these young people have created for yourself?  Here is one of the panels – a carriage which shares the message of how faithfulness in marriage can prevent HIV from spreading.

ART panelWe are glad to be able to have a medium which pitches life-giving messages to passers-by.  Here is one about the fact that free Anti-Retroviral medications are available to help people with HIV live and not die…

At the end of the day – we want people to know that everyone is very special – and very valuable.  The last message is thus:god loves all


JSK World AIDS Day Outreach at the Thane Railroad Station

December 12, 2013

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Saturday the 30th of November was a ‘red letter day’ for the Jeevan Sahara Kendra (JSK) – no, make that a ‘red-ribbon day.’   In solidarity with the 35 million people world-wide who are living with HIV, and in remembrance of the 36 million estimated to have died so far to AIDS, and in the hope that no more new infections will take place, the Jeevan Sahara Kendra decided to mark this year’s World AIDS Day with a public outreach to help the general population in Thane stop the spread of HIV.

The Jeevan Sahara Kendra has been working in Thane for 11 years now – helping people with HIV and their families get personalized HIV care in their homes through a combination of personal and family counseling as well as monitoring and supervising ART and other life-saving medications.   This work is further strengthened by an integrated counseling and testing centre (ICTC) which we run in collaboration with the Maharashtra State AIDS Control Society (MSACS), an outpatient clinic and in-patient care that is provided at the JSK Community Care Centre in the Lok Hospital Building.   While most of our work is in caring for people who already have the disease, JSK makes is a point to periodically reach out to the broader population to help prevent the further spread of this disease.

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The Thane railway station is the life-line of the city, with an estimated 6.5 lakh passengers passing through every day.  We decided to make this the focus of our prevention work for our World AIDS Day 2013 intervention on Saturday 30th of November.

HIV Information Table

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Having received the necessary permissions from the railway and police authorities, our team set up an information booth at the railway station near platform no. 1 and 2.   An informative poster exhibit was put up – including ones made by our adolescent groups which include HIV positive young people and children of people who have HIV.

Free literature about HIV in various languages was also available – for which we want to especially thank OM books and bro George Verwer for their generous provision of this.   Throughout the day interested people came to the table to pick up literature and to talk with our staff and volunteers about HIV/AIDS.  A number of impromptu counseling sessions were held – and a number of people were referred to the testing and counseling camp being held simultaneously at the auto / taxi stand area.

All through the day our staff and volunteers gave out literature, pinned the red ribbon on members of the public to signify a commitment to ending AIDS, and talked about how it is possible to live a life free of HIV.

???????????????????????????????By the end of the day the JSK information booth had distributed a staggering 5058 copies of the booklet “Ten Great Reasons not to have Sex before Marriage” to the public.  The bulk of the copies were in Marathi (2500), Hindi (1460) and English (1000) with a small number in Malayalam, Telegu and Tamil (total 98) given out as well.  In addition the team distributed 350 packets of information from MSACS, as well as 450 copies of “HIV and Life Positive” in Hindi as well as a number of other miscellaneous HIV related literatures.

Free HIV Testing Camp

While all of this was going on, the other part of the JSK team was conducting a free HIV Counselling and Testing Camp in collaboration with Rashtravadi Rickshaw-Taxi Chalak Malak Mahasangh.  We had put up a shamiana the day before so that the counselling and blood collection would take place in full confidentiality.

Our JSK staff and volunteers took the “Ten Great Reasons not to have Sex before Marriage” booklets and red ribbons and gave them to all the auto-rickshaw drivers as they came to pick up their passengers.  Others talked with taxi drivers and autorickshaw drivers and encouraged them to get tested.

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The results were spectacular.  All through the day a steady stream of people came for HIV counseling and testing.  Our staff and volunteers registered each person before the counseling session and then helped guide them to the appropriate rooms.  After they had received pre-testing counseling, and had their blood sample taken, the JSK team and volunteers then gave them a small snack and continued sharing information about HIV and how to prevent its spread with the participants.

???????????????????????????????Over the period of the day, our counselors gave HIV pre-test counseling to 139 people.  Of these, 131 (including 4 women) agreed for voluntary testing and gave their blood samples for the HIV test.

The overwhelming majority of the participants were auto-rickshaw and taxi drivers – with about 10% of the participants being members of the general public who had been met at the JSK information table and also came to be tested for HIV.

One man – who was due to travel later that day to Rajesthan – postponed his trip to be able to come and find out his test result (which we were able to tell him the next day was HIV negative!).

Significantly, most of the people who were counseled had or where engaged in risky sexual behavior.  The camp offered them an opportunity to come face to face with the possible consequences of their actions.  At least 4 of the participants told the counselors that they had been engaged in homosexual encounters.

???????????????????????????????After the counseling and blood collection was over, we took the samples back to the JSK centre to be processed.  We were so happy to find that not one of the 131 samples were positive for HIV!  This means that though most of our friends have been exposed sexually at some time or the other, they have been spared the life-challenging consequences of actually being infected with the disease.   Our counselors met with those tested on the next two days to give the HIV test results – and have the pleasure of telling each one that they are ‘HIV negative’ – but that they need to thank God for that and change their behavior if they would like to stay negative.

Our staff and volunteers managed to distribute another 1700 copies of “Ten Great Reasons not to have Sex before Marriage”  in Marathi (1000), Hindi (500) and English (200) over the course of the day to different autorickshaw and taxi drivers, as well as putting red ribbons on them.

All in all it was a memorable day for the Jeevan Sahara Kendra, and we are grateful for all our staff and volunteers who put in so much work to get the job done.   We know that the literature that went out will help change lives into the coming days – and that each person tested will have a new understanding of his or her own behaviours.  We are grateful to the leaders of the to the Rashtravadi Rickshaw-Taxi Chalak Malak Mahasangh as well as the Thane Railway Station and Police authorities for cooperating with us to make this World AIDS Day 2013 outreach a grand success.  

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Welcome to our ‘new’ In-Patient Centre!

June 14, 2013

Hello dear Friends!

We are happy to announce that the renovations of the Jeevan Sahara Kendra Community Care Centre have been successful and we now have a 10-bedded in-patient unit operational!

With these facilities, we are now able to give 24 hour care to people living with HIV/ AIDS who are sick and need secondary hospital care to get better.

Will you join us for a small tour of the new facilities?

We will ask our dear sister Kavita to cut the ribbon and open the door for us!ribbon cutting

Thank you Kavita!  Now we can enter…

As you come into the hall, you first see the nursing station at the end.

new corridor and nursing station

This is where our nurses are on duty – 24 hours a day – to make sure that people with HIV who are admitted at the Jeevan Sahara Kendra for treatment get better!

As we take the first door on the right we see this:

new consulting room

This is the Doctor’s consulting room, where Dr. Sheba Eicher and other experienced and caring doctors do the initial examination and diagnosis for our patients.

We are privileged to have Dr. Sheba as our Medical Director – besides her specialisation in Family Medicine has also done her Fellowship in HIV medicine from CMC Vellore and has over a decade of experience in treating people with HIV/AIDS.

The next doors open to our three wards – one for women, one for men and one for people with active tuberculosis.

new female ward

Here is the women’s ward.  We have 4 beds available for women in this ward.

In the men’s ward we have another 4 beds for men and a further 3 beds available for people with active TB in a separate ward.

At Jeevan Sahara Kendra, we have a decade of experience in loving and caring for people with HIV.   We know these new rooms are not just a beautiful facility, with windows overlooking trees even though we are in the middle of a city.  We know that they are places of healing and care – where our experienced and loving medical and nursing staff are giving hope to many who have only experienced rejection till now.

Our Jeevan Sahara Kendra Community Care Centre is designed to give short-term hospital stay (generally up to 2 weeks) to immuno-compromised patients.  We are not an ‘ashram’, but rather a ‘treatment centre’ where our team works with the patient and their family to do everything possible to address their physical, emotional and spiritual needs.

For People Living with HIV/AIDS from Thane city, we are able to follow up afterwards with home-based care.  For patients coming from other parts, we work to link them up to local caring HIV centres in their home area.

So please do not hesitate to contact us.  You can call at 022-25899248  or our mobile at 9321112065.

We are here for you!  Our head nurse sister Agnes and the whole team is waiting to serve you and your family!

new nursing station


Baby cured of HIV! What does it mean for treatment now?

March 13, 2013

ImageThis month we have heard some exciting news: a newborn in the US who was shown to have HIV was treated with a full strength combination of HIV drugs for 1.5 years.  Then her mother took her away for 5 months – discontinuing the treatment.  When the mother brought the toddler back she was found to have no virus in her – and no anti-bodies targetting the virus.  The first hard evidence of a cure for HIV in a child!

This is wonderful news, because it shows again a ‘proof of concept’ that a cure for HIV is possible.

For most people with HIV who are on the life-saving Anti-Retroviral Therapy (ART) medications – the medicines effectively kill all the virus in their circulating blood supply.   But the virus manages to ‘hide’ in an ‘dormant’ form in some of the body’s own CD4 cells.  These ‘latent’ CD4 cells are not affected by the ART medications.

So if a person with HIV stops the ART medication – what happens is that the HIV genetic material in the latent resevoir cells get ‘turned on’ and start producing new HIV virions because there is no ART in the person’s blood to prevent them from multiplying.

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In the case of the little girl – researchers think that the immediate starting of ART meant that the ART medications wiped out all the HIV in the girl’s blood – and prevented the formation of the latent viral reservoir.

So what does this mean for us?

We are thrilled to see that early and aggressive treatment in this little girl seems to have stopped HIV from ‘getting a foothold’ – and that this girl now does not need to take the ART medicine life-long!  We would expect to see changes in HIV treatment for HIV infected new-borns where they are immediately put on treatment after birth.

By God’s grace very few new-borns are now HIV positive because mothers are being treated with ART and so the chance of transmission from mother to child has gone down from about 30% to less than 5% (if all the treatments are taken correctly).    But the hope is now that even for the 5% who are born with HIV despite treatment to mother – they can be cured!   This will obviously mean more research and careful planning – so we will not expect new protocols very soon – but probably within a year or two we should see new ways forward.

What about for adults?  Sadly most adults are infected with HIV without themselves knowing they have the disease.  Usually by the time a person starts on ART the virus has done its damage and will have set up an impressive array of latent reservoir cells.

Does this mean there is no hope?  No it does not.  Because the current set of research is to try and work to get medication that can attack the latent reservoir and thus achieve a ‘functional cure.’

Here is one current model which is being researched.  It is based on an experimental drug called Prostatin.  Prostatin is known to activate the HIV reservoir cells.  So this is what they hope will happen:

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The idea is that by giving prostatin – along with existing ART – the latent reservoir cells will become active and so open themselves up to attack by the ART.   If this works – then it should be possible to rid the body of latent reservoir cells and at some point in time stop the ART.  And not have HIV show up again!

There is still a long way to go along this road – studies need to be done on how toxic prostatin is (and other drugs like it), how effectively they cause the cells to express themselves, how quickly they work, what doses are needed etc. etc.

We are not close to a cure.  But the real possibility of a cure is starting to come into view.

As Winston Churchill said after the Battle of Britain: “This is not the end.  This is not even the beginning of the end.  This is perhaps the end of the beginning.”

Lets keep praying for our medical research community.  We need to see God inspire them to new treatment breakthroughs.  And we all want to see a functional cure as soon as possible!

In the mean time – it is vital that every person with HIV – young and old – who is on treatment with ART – should continue to take it.  We must not stop the medications until we have the rock-solid proof of a functional cure.  And by taking the medicines faithfully – we trust and hope that each person currently living with HIV and on ART – will see the day when they can stop taking their meds!

But till that day finally comes – keep on the ART medications!  Don’t give up! Don’t stop!


World AIDS Day 2012

December 1, 2012

HIV ribbon with candle

Today is just another day.

In India about 2,400,000 people will awake and go about their daily chores.  The thing that sets them apart from their fellow countrymen is that their bodies have the HIV virus in them.

Many of these 2.4 million do not know that they have the disease.   Without doing an HIV blood-test there is know way we can tell a person has HIV.  Many do not think they are at risk – and some who know that they may have HIV are too scared to test.  But only if we test for HIV can we start treatment.

Testing is key.  Today the Jeevan Sahara Kendra is conducting an HIV awareness and testing camp at the Gandhinagar Primary Health centre in Thane.  As I write we already have counselled and tested 50 people – many of them TB patients who come 3 times a week for their medications from this govt. health post.

We want more people to be tested.  Testing means that I am willing to find out the truth about my status.  That I am concerned about who I am and how my actions will affect others.  Getting an HIV negative report is wonderful news – and will help me change risky behaviours since I have a huge incentive to stay HIV negative.  If I find myself HIV positive – then now is the time to start treatment – so that I *can* live long.

On this World AIDS Day we salute those with the courage to know the truth.  The Bible tells us that ‘truth will set you free.’  We know this is true.

We also salute all those who are helping people with HIV.  Through our work we know of many unsung heroes who are doing what they can.  In the govt. sector we salute the doctors and public health nurses who meet people with HIV and help them with ART and TB treatments.

We salute the name-less volunteers from local churches who go and visit people with HIV in their homes – and who welcome their ‘Positive Friends’ into their homes too.  We salute all those who quietly help financially when widows struggle to pay room-rents, and who bring food for people with HIV who are destitute.

We salute our Positive Friends themselves.   What a thrill it is for us at Jeevan Sahara to hear each month the stories that People living with HIV/AIDS tell during the support group meeting.  We salute ladies like Kavita who are bold and telling their tale to others.  We are so proud that tomorrow – during Mumbai AIDS Sunday 7 of our HIV Positive Friends will be telling their stories in different churches – and challenging people to love and care as God does.

Today is an ordinary day.  Full of extra-ordinary people.  We salute you all and are so privileged to work together with you!

 

Some know but are trying to avoid addressing it.


Take your meds!

August 8, 2012

Anti-retroviral Therapy (ART) medicines are the life-line to living with HIV! 

At the recent International Conference on HIV in Washington DC (USA) it was said that a person with HIV in Uganda who is 35 years old now – and has a CD4 count of higher than 100  –  and starts on ART and takes it faithfully is now expected to live for more than 35 years!

That means that taking ART regularly can allow you to live just as long as you would expect to live if you did not have HIV.  This is great news!  And we are not talking about living in the ‘advanced western countries’ – the Uganda estimate is for a country with a health system and standard-of-life situation similar to what we have in India! 

But did you notice that in the second paragraph we highlighted 4 words: and takes it faithfully!  If I have HIV and I do not take the medicine very, very, very regularly…. well, then it just won’t work!  

This is what we call ‘Adherence’.

What does ‘adherence’ mean? 

It means being able to take the medicines you have been prescribed completely!

All the drugs – at the right dosages – at the right time – and in the right way!

No missing doses!

If I have HIV and I take my meds properly – then the amazing immune system God has given me can be rebuilt.   My body can fight off all the other diseases that are trying to bring me down.

But if I do not take the medicines properly – well – then the medicines will stop working.   Period.

There are other sicknesses like diabetes – where if I miss some meds then I can compensate by increasing my doses later.  HIV does not work that way.  If I miss my meds – then I am giving the virus a free ride to become resistant to the meds. 

Take a look at these pictures.  They illustrate what happens in the body of a person with HIV who is taking their ART meds twice a day.

If the person taking ART is regular – taking their medicines at the same time each day and not missing a dose, then this is what takes place:

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After a person takes their morning dose at 8 AM, the level of the drugs in the blood increases till about 2 PM, after which they start to drop.  But they never go down to ‘zero’ because at 8 PM, the next dose is taken and the level of drugs increases again.  The pattern is repeated the next day.

The most important aspect is this – by regular taking of ART at the right time each day, the level of drugs in the blood never drops below the ‘Threshold of Viral suppression’ (shown in the picture in yellow).  This means there is always enough drug available to suppress the HIV.  You suppress the HIV – and it can’t reproduce!

That is why good adherence to ART medication should result in the person with HIV having no detectable HIV in their blood!  

That’s great news!  It means that the bodies CD4 cells are then able to replenish themselves – and the overall immune function can improve – leading to a restored immune system!  And we are seeing this happening over and over again.  People on ART who are taking their meds properly – are getting so, so much better.  Are able to work again.  Are living to see their children getting married!  Amazing stuff!

But all of this depends on taking the medicines in the right way – faithfully!

Here is what happens if the ART meds are not taken regularly.

In this case, the person took a dose at around noon – and then the next dose the next day at about 5 AM.

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As you see in the picture above, from 8 AM to noon there are no ART drugs circulating in the person’s blood at all – because they have not taken their meds. Even when around noon they take their dose of ART – it still takes about an hour for it to come to a level where it will suppress the HIV virus.  

So from about 2 PM the ART is now able to suppress the HIV virus – the levels increase till about 6 PM, when they start decreasing again.  Around 12 AM the levels of ART dip below the minimum threshold needed to suppress HIV.  From now on the HIV can multiply again.  And the next dose is only taken at 5 AM, which means another hour or two before the minimum threshold is reached.

So what does the HIV do in a person on ART who is not taking his or her meds regularly?  It does this:

As you can see – whenever there are no ART drugs circulating in the blood – the HIV is reproducing.    More HIV means more attacks on the CD4 cells.

And even more importantly – when the ART drug is present in sub-optimal levels – the HIV that is reproducing at that time can become drug resistant.

This is why some people who are being treated on ART experience drug failure.  They have opened up doors for the virus to keep reproducing even though they are taking ART meds.   Sadly – some of them allow their HIV to become resistant to the ART meds.

The shocking thing is this – even people who think that they are taking their meds regularly may be opening up the gates for HIV to reproduce.

Take a look at this chart.

What you see is the percentage of people with ‘undetectable viral loads’ (which is what good ART should achieve – as against how regularly they take their ART meds:

If you see the first column you can see that 80% of people who are taking their ART over 95% of the time – achieve an ‘undetectable viral load.’

But here is the shocker – even people who are 90-95% adherent – only half of them achieve an ‘undetectable viral load.’

And for people who are less regular … well the figures show that most of them won’t reach the goal of suppressing their HIV.

So what does this mean?

My dear friend – if you are reading this and you have HIV – please do take your ART faithfully!

It is such a gift to be able to have these meds!  They can take you well into old age.  You can become old – just like all your friends and relatives who do not have HIV expect to get old.  But they will only work if you take them very, very, very regularly.

You have to achieve an adherence rate of over 95%.  That means that if you are taking your meds morning and evening – you have to miss less than 3 doses in 3 months!

Remember – the key to your long life is in your hands.  Those ART tablets are a gift from God.  Take them.  Regularly.  We want to see you live.  And we all want to see you live long and healthily!

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If you are reading this and you have a friend or relative who is HIV positive – please do encourage them to take their meds.  It is often a challenge to take the meds regularly.  No one likes to take pills – and that too life-long!  But if your loved-one does take their meds – and takes them regularly – then they can have a long life!

Your part in encouraging and helping out your loved one is vital.  

Be there for them.  Keep positively talking about the need to take the meds.  Pray with them.  Find out when their next ART appointment is.  Offer to go along with them to the doctor.  Tell them how valuable they are.   Show them you care by being with them through the thick and the thin of things!

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We all need each other.  ART meds are a great gift from God – but are not always easy to take.   But once we start on them, we have got to keep taking them.  If we take them regularly… then we can live looooooong!

Don’t stop!  Keep taking your meds!  And make sure you take your meds faithfully! 

We want to see you old!

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Note:  Much of this post was taken from “Adherence and ART” the excellent powerpoint presentation put together by the Harvard Medical School HIV Initiative in Vietnam.  This can be downloaded by clicking: here

JSK CCC

December 15, 2011

 


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