Monday, 28 July 2014

The price of life... and death

We have a very sick HIV positive woman admitted at Jeevan Sahara Kendra - who we will call Mrs. Devpriya.

Mrs. Devpriya has virtually no immunity left.  Her CD4 count is a paltry 5.

Most healthy people have between 1200-1500 or so  CD4 cells per cubic mm of blood.

Sheba and the medical team have diagnosed that Mrs. Devpriya is suffering from a brain infection caused by a fungus.  She was admitted with repeated seizures.  Our medical and nursing staff have worked hard to control these - but she urgently needs intravenous medication.  Sadly she has slipped into a coma.

There is still hope.  Amphotericin B is a powerful - antifungal drug that can be given intravenously.  The treatment may yet save Mrs. Devpriya's life.

The problem was that it is prohibitively expensive.  A single vial, used for 1 day treatment costs about Rs. 5,500/-.  The course of treatment would be 2 weeks.  Just the medication alone would cost them Rs. 77,000/-!

We explained this to Mrs. Devpriya's 17 year old son and her husband.  They hesitated for a while. Then said that we should go ahead.  They mumbled something that they would get someone in their village to sell off some land to pay.

We are in a big city, but the ties to land go back into the hinterland.  This is a family with roots in Rajasthan. They were about to do what an estimated almost 1 million or so people in India do each year - sell whatever assets they have in order to pay for a medical emergency.   Some say many more are impoverished due to catastrophic out-of-pocket medical expenses.

We had put no pressure on them to do so - we just gave them the option.  But that is what they chose.

Then we got the actual vial of amphoteracin B.   When Sheba looked at it and prepared to administer it, she realised that for Mrs. Devpriya's weight we would need 4 vials a day.  Rs. 22,000/- per day.

Now the Rs. 77,000/ - became Rs. 336,000/-.  A third of a million rupees.  And no guarantee that Mrs. Devpriya will even survive, since her immunity is so low.

Sheba called up the pharmacy of our parent hospital.  She noticed that the vial was in a lipidized form that was meant to reduce adverse effects.  Was there no other option, a non-lipidized form perhaps?

The pharmacist was helpful.  He said that there was another kind available - but that they did not have it in stock and that he would find out about it.

He called back and said that there amphotericin B was available at the price of Rs. 300 per vial.

What?

Rs. 5500/- vs. Rs. 300/-?

What???

Rs. 336,000/- vs.  Rs. 4,200/?

Madness.

We got the far far cheaper version of the drug by noon today, and have started it on Mrs. Devpriya.  The unused Rs. 5,500/- vial was sent back to the pharmacy at our parent hospital.

Mrs. Devpriya is still in a coma as I write this - and your prayers are deeply sought for her healing.

But how can there be such a big difference in the cost of a life-saving drug like amphotericin B?

A quick web search found that there is a company flogging amphotericin at Rs. 11,300 per 50 mg vial. While the company whose version we purchased has a listing of Rs. 295 for the same 50 mg.  Interestingly, that company also has a more expensive version - selling the 50 mg at 50 mls with a sticker price of Rs. 6300.



It's mind-boggling that a drug can be sold at 3800% more expensively.  You can see why the pharma industry is such a black hole of corruption.  Why the medical representatives bribe doctors with junkets to Malaysia to get them to prescribe their company's drugs.

You can literally see people's blood being sucked, their assets stripped as they come to "the healing profession" with trust that what they are being told is in their best interest.

You can see now why doctor in India no more enjoy the sacred trust they had in our growing up years - and why more and more groups turn to violence against the medical profession when things don't work for their patient.

We are still shaken by this episode.  

Sunday, 27 July 2014

Basil


Last week, Sunday evening, as I was playing the guitar at the Gospel meeting, I saw a man sitting in the back row, wearing the blue uniform that marked him as a person who is admitted at the Jeevan Sahara Kendra Care Centre.

This evening he was not there.  His relatives were.  Lots of them.  At the end of the meeting, after putting the chairs away, I came into the hall.  From the other end I saw two men bearing a stretcher.  On it was a white-shrouded body.

The man and the body were the same: Basil.

Last week I had a conversation with Basil (not his real name of course).  He said that he was being treated for brain TB.  He seemed in good spirits.   Today I could not speak with him.  The breath of life had departed.  The body was being taken away.

Basil is a man who has died of HIV.   One more silent statistic.  One more life that has succumbed to one of the grimmest reapers of our age.

Over the past 2 months we have been treating a number of very sick people with HIV at the Jeevan Sahara Kendra Care Centre.  Most have been discharged in a better condition than they arrived at our center.   Our doctors and nurses have worked hard to treat what is treatable - and to provide care when that is not possible.  We are so grateful for this labour of love.

Basil's life ended this afternoon.  I was taking a nap when Sheba got the call.  I woke up to have the kids tell me that Sheba had left for the centre because a man had died.

Basil had been treated at government hospitals.  At one of them they detected a node in his brain.  Thinking it cancerous they did brain surgery.  It wasn't.  It was tubercular.  It seems mind-boggling that a surgery should have been done on an HIV positive man when TB is always a very clear and present reality.

After the surgery he was told to stop the TB medications because he was not tolerating them well.  A few weeks later he went back to the hospital for his follow-up.  The examing doctor was aghast that Basil had stopped his TB treatment and shouted at Basil's wife for this.  When she told the doctor that she was only following the orders that his hospital had given, he lost his temper completely and shouted at her to 'get this mad-man away from here.'

Basil had been taken to a number of hospitals and the largest hospice in Mumbai.  His family finally brought him to us.  We had high hopes that he would walk home.  He did not.

Basil's last week was not easy.  On Tuesday he refused to take medicines.  He broke a blood pressure monitor.  He was not the 'ideal patient.'

But then dying is not an easy road.

As the week ended, Basil was clearly nearing the end of his life.  Sheba sat with his wife and teen-aged daughter and told them to call their relatives.  They did. The relatives came.  When Basil died this afternoon he was not alone.  He was loved and cared for.  His final hours were peaceful.  The family was very grateful for the care that Basil had received at JSK.

How we wish that every person we care for will walk home happy.  Doesn't happen.

As Dr. Bob Carter from Kijabe, Kenya told us a few months ago:  when we are doing curative care we want to "add days to life," and when we are doing palliative care we want to "add life to days." For Basil that switch took place this week.  And now his life is over.

With the door to Basil's room still open, and his empty bed in the background, I met briefly with our nurses to thank them for their care and then said a short prayer for them.

We trust that we will meet Basil in eternity.  Where there are no tears anymore. 

Our lives are fleeting shadows.  What is even 100 years compared to the vast expanse of infinity?  What hope we have to be safe in the arms of Jesus.

These are my thoughts as the rains continue to lash down outside in the darkness of the night.

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Photo taken by Jolly Thomas yesterday at a cemetary in Pune

Saturday, 19 July 2014

A new home

Ruth playing with Asha and Enoch when she visited us with her new parents last month.  It was very special to see how these three bonded with each other so beautifully!
We recently talked to Amma and Appa - and heard that they had been visited by a very special family - Nagesh and Vasundhara and their new daughter Ruth!

It was wonderful to hear about how Ruth is so loved in her new home.  How she talks to her 'Daddy' and 'Mummy.'  How she sits next to her mummy when she is washing dishes and 'helps' out. When the clothes are dried Ruth pitches in too.  How at not even two years old she sat through the whole Sunday school session away from her mother.  How she prays fervently.  How when she laughs she also closes her eyes like her Mummy does.

The other day her Daddy was talking on the phone and left the home for his duty at the steel plant.  Seeing him leave that way, Ruth called out: 'Daddy pray!' - and so he came back in to pray with her.  Nagesh and Vasundara are so in love with their daughter - and so grateful to see who she has bonded with them.  We got an email this morning from Nagesh telling how much they see prayers being answered in their lives.

We are so glad to know that Ruth has a home.  Her Daddy is the youngest in his family - with 4 older sisters.  Each one calls daily to speak to little Ruth.  What a loving family this wonderful little girl has now!

Next month is Ruth's 2nd birthday - plans are already afoot for a celebration in Hyderabad.  Her first birthday was celebrated at Mukti Mission - and by God's grace her second will be celebrated with her parents and extended family.

Amma reported how she and Appa were charmed by the little one.   Ruth ran all around the home like a free spirit. When Amma was sweeping the house Ruth joined in too.   At one point during her visit she took one of Appa's books and went into a corner and sang lustily in Marathi.

There is a wonderful promise in scripture: God sets the lonely in families (Psalm 68.8a).  We are so happy to see this lived out in front of our eyes for a very special little girl - and a very special set of parents!

Friday, 18 July 2014

Behind bars


Sheba went to jail today.

To the Thane jail.  The large hulking expanse of a fortress - designed to keep people in rather than repel invaders from outside.

She went along with folks from the Sahaara Charitable Society who have been working in the 4 jails that serve the 18 million people of Mumbai.

Till now Thane jail has only had male inmates.  But recently the authorities decided to open a women's section because a number of undertrials had cases in the Thane and Borivali courts - and the constant transportation from the other jails to the courts took so much time.

Sahaara has been working for years with inmates - meeting them and caring for them in various ways.  Sheba could see just how good a rapport that Ravi and Sanjeev and Kavita had with the prison authorities.   Amid all the guns and bars and doors - the three of them walked with full confidence.

Since the women have just shifted to this facility, the jail authorities asked Sahaara whether they could arrange for a Gynaecologist and a Paediatrician to help out.  A number of the women are mothers.  Jail rules allow them to have their children with them in their cells till the kids are 5 years old.  Then they need to be looked after by family members outside the jail.

So Sheba and Sandhya went to see what it was like.

Well, scary is on thing.  So many gates to go through.  Seeing men lined up and then hand-cuffed so that they can be taken out to the prison bus which will take them for their hearings.  Seeing so many guards - armed and otherwise.  A totally different world.

And so Sheba finally met the women.  There were about 40 of them.  Some had children.  They greeted Kavita with joy - since they had met her in their previous prisons - and were now meeting her for the first time here.

All the prisoners have an HIV test done on them.  Two of the women were positive.  One is a lady from Africa - whose CD4 level is still quite good.   The other lady has just found out about her status - and also has a month-old child.  The prison officer who was with Sheba and Kavita and Sandhya asked for advice on how to care for the child in order to minimise transmission.  They have started providing baby formula - but the mother is still breast-feeding.

Soon it was time to leave. 

Back out through the clanging gates.  And out of the prison itself.  Back to the clinic with a number of challenging cases who came today.

We have a big opportunity and a big decision to take.  Do we commit to visiting regularly?  There are at least 2 ladies with HIV.  Most of the other women will have various health needs.  All of them need a friend and a counsellor and someone to give them hope.

Kavita - a simple lady who turned down a government job in favour of serving with Sahaara Charitable Society with the jail ministry - had story after story about how they had seen prisoners changed.  About how God had brought hope and new life into hopeless situations.

So many open doors - even where there are bars keeping people in.

Continue to remember those in prison as if you were together with them in prison, and those who are mistreated as if you yourselves were suffering.   
- Hebrews 13.3 NIV

Still seeking a cure

Earlier this week we got the melancholy news that the HIV positive child from Mississippi who was thought 'functionally cured' of HIV because of agressive early treatment - has HIV in her again - two years after she had stopped her medications. 

So the number of people 'medically cured' of HIV goes down from two to one. 

The sole person world-wide that we have documented as being cured of HIV using medical treatment being 'the Berlin Patient' - an American man who was given a bone marrow transplant for an advanced leukemia (people living with HIV get other diseases too...) and who was able to stop medications because the donor had a known mutation which stops HIV from reproducing.

I was talking to a man day before yesterday.  38 years old.  Intelligent.  Kind.  A man who helps others as part of his calling.  A man who found out 10 days ago that he is HIV positive.  How did he get it?  We did not probe on this - but he did speak about being abused as a child. 

WHen I asked him what questions he had - he did not dwell on the issue of how he got the disease.  Maybe we will talk about that later.  The question he had was how long would he live.

My response was that I can't tell.  But that today that is good news rather than bad news.

Because of the medications - we now expect people on Anti-Retroviral Therapy to live past their national average lifespan.  Our ladies who are on ART have a body mass index signficantly higher than our national average (which is woefully thin).

What I told my new found friend was that if we find out that he needs to start the medications - that if he takes them regularly - he should be able to live a normal life-span.  This is wonderful news - the kind of stuff that we would only dream about 10 years ago.

God is answering our prayers - all around us are people who are able to live because of the pills.  And because they are taking them.

Sadly there are people who are not taking their meds.  People like Mr. and Mrs. Tamam whose family situation is so chaotic - and whose personal behaviour is so erratic that you want to just weep.   Despite countless times of counselling and a number of apparent steps forward, this family seems to be bent on self-destruction. 

And then there are others who are clinging to hopes of cures through other means.  Sheba talked yesterday to a couple who have tragically spent over 20,000 rupees on an 'ayurvedic' treatment from Kerala.  We are trying to get them to start free ART treatment - and the lady is saying that she doesn't have the money to take an auto-rickshaw here - but that her husband is being cured by this 90 day therapy. 

The man is thin and coughing.  Sheba told them that we would check for TB and if we find him to be suffering from TB, then we will have to start on both TB drugs and ART. 

The most notorious swindler - is a chap called T.J. Majeed - who the supreme court has banned from selling HIV medications (his website does not have anything about HIV right now - but plenty of hints that his 'medicines' will kill viruses...)  A man who it is said has built a house (and pretty big one at that) called 'Virus.'

And here we have sitting in our clinic a couple who have fallen for this man's lies.

It's just so sad that we are still fighting such unscrupulous touts.   And shows how far we still have to go - especially as people with HIV now have medications that world wide are cutting the death rates and allowing people to live.

People like my friend 'Eddie' who will be coming to meet me tomorrow.  A Bible school graduate (which he did after he found out he had HIV), Eddie is dropping in after his appointment at the government hospital to pick up this month's medication.

Five years ago Eddie was dying from TB of the heart.  We helped diagnose him and treat him and with prayers and meds he got better.   This handsome young man is the last person anyone would think is living with HIV - but he is alive thanks to the ART meds - and his prayers and willingness to stick to the meds religiously (literally!).

We are still seeking a cure - but till we get the gold standard - we have something really, really good that is helping so many of our dear friends with HIV!

Tuesday, 15 July 2014

Goodbye Lydia


One of the blessings of the last 12 years of our work with Jeevan Sahara Kendra is that we have some amazing people coming along to help out.  Lydia Ganta was one of them.

Lydia's parents are Christ-followers who lived in Papua New Guinea and in exotic Chennai - and Lydia attended boarding school at Hebron school before going to the UK to study nursing.  After her studies she got a job with the NHS.  At the same time, her friendship with her school mate Sam Ganta blossomed into marriage.

So Lydia put her NHS job on hold and came back out to India.  After many years in the Gulf, Sam made a foothold in Mumbai - and so after their marriage Sam and Lydia set up their first home in Vasai - a hefty 1 hour bus drive away from Thane.

Eight months ago Lydia joined JSK as a volunteer nurse.

For eight months she has come 4 days a week.  By bus. Arriving before the 9 AM prayer time we have.  Leaving at 6 for the long bus ride back.  Taking night duty when needed.

Eight months have passed in a flash.

Last week we said good-bye to Lydia and Sam.  Sam's visa is through and they are off the UK.

In the morning Lydia shared in our prayer time.

As a team we meet each morning from 9 - 9.30 to ground ourselves for the day by a short time of worship, followed by a time of sharing God's word and then prayer for our Positive Friends and for each other as we plunge into the day.

Being Lydia's last day it was appropriate that she shared.

Then at noon we gathered as a team for lunch and a send-off time.   Priorities (and Sam being still on the bus) demanded one thing.  Lunch first!





It's been a while since we had a proper JSK staff pot-luck.  Well there was no luck here - and lots of pots - of superb food.  This had nothing to do with chance - completely pre-ordained - even a cheese cake for crying out loud!

But more than food - this time was about thanking.  Thanking God for Lydia.  Thanking Lydia and Sam for their time with us.  Being glad to see one chapter of their lives over and a new one beginning.  Expressing our sadness at their going - and gladness at who they have been with us.


And so this chapter ends.

We will remember Lydia for her gentleness and grace.  Her willingness to serve.  Her hard work at learning Hindi - which she ended up speaking pretty decently.  Her never-complain-about-the-long-bus-ride-to-JSK attitude.

We wish we could have seen more of Sam - but that's the way the cookie crumbles.  We were blessed to have him along on the JSK staff retreat this year and he won everyone's heart with his fresh candour and love of life.

As our friends take wing on the 19th of this month and head over to 'Blighty'  we wish them all God's blessings and joy.

We would love to see you back Sam and Lydia! 



Sunday, 13 July 2014

A rest day

With the kids getting the bus to Bombay Scottish at 6.50 AM each day - we parents have to get up by 5 AM latest.  Read Bible - make tea - get uniforms ironed and ready - pack tiffins - wake up kids - feed not-so-hungry mouths - fill water - tiffins into bags - are the shoes polished - pray - kids out the door - wait for bus - off they whoosh towards their 8.20 school start!

So the alternate Saturday when this doesn't happen - and we don't need to be at work at 8 AM is a sheer joy.

Today was such a day.  Only woke up when the lady who takes the garbage down rang the bell since our bag was not outside.

And so with sleeping kids well after 8 AM - there was the leisure of the morning cuppa while reading the Good Book.  And then a plan to make waffles bubbles up.

Idea was good - but sadly the iron decides to eat the waffles - two attempts and two scraping offs later... the waffles turn into pan-cakes!

In the mean-time Sheba gets a call from the centre.  A patient has come.  She says she hopes to be back in an hour.

She is back at 3 PM.  So much for a rest day.

A woman with a low haemoglobin came for admission.  We had given her a blood transfusion earlier and asked her to get a bone-marrow sample done at our parent hospital.  She was given an appointment but did not tell us about it. And didn't go for the appointment.

Instead - when she got ill again she admitted herself at a pokey hospital at a huge cost.  Amazingly, the church that Drs. Emmanuel and Mokshaa worship at meets in this building.  They somehow found out that she was there - and told her to come to JSK.

She shows up on Saturday morning - our off day - but Sheba's on-day.  Since everyday is her on day when it comes to sick people.

When she came back I was reading Freedom at Midnight to the kids.  We then switched with Sheba spending some time with Asha and Enoch's homework - and I went shopping for supper.

Mum's spagetti sauce recipe was put to good use by me since we had company tonight - our dear Agnes and Annie Haokip and our JSK intern Elizabeth.

The power went out during dinner, allowing us to bring out the candles!






As Eichers we can't have guests without at least a game.  So we dug out the pictionary and had a whirl.   Then Bible and prayers...

And then Sheba went out with the ladies - over to Jeevan Sahara to see the patients on her night call.

The kids and I got our costumes ready for tomorrow night's match.  We will be wearing Black, Red and Yellow - so you can be sure we are not supporting Argentina to get a 3rd star on their football jerseys!

Sheba came back at 10.30 PM.

Dishes done.  A load in the washing machine.  Hamsters fed.  Kids in bed.

A rest day ends.