Believe in Us: Bhubaneswar and Pondicherry

Greeting patients in Bhubaneswar
We flew in Thursday night (Nov. 14) to Bhubaneswar. I love Bhubaneswar. It’s small, colorful, intriguing, and poor. Paved roads give way to dirt roads; cars give way to bull-drawn carts. Sometimes it seems the poorer the place, the more intrigued and comfortable I am. If I dared to believe in reincarnation, as Hindus do, I’d say I must have come from the slums in an earlier life. I am at home in them, and am drawn to them.

The hotel is nice that we checked into last night. Clean, quiet. But no hot shower, again. Will I never have a hot shower in India? This time it’s because the water heater was “hidden” from view—my own fault. The food in the restaurant is also good. Indian food is just delicious!

Chittaranjan

Usha and I again pack up toys and factor to share, and Chittaranjan, the secretary for the Bhubaneswar chapter, picks us up at 8:30 am. We go to the medical college where Chitta is attending as a nursing student.

Chitta is an amazing young man. Only 24, but so unworldly mature. He has hemophilia, limited access to any factor, is going to college, doing well, and running a whole hemophilia chapter! He pulled together this entire event today. His demeanor is respectful, but he knows when to push to get an idea or suggestion across. I marvel at his diplomatic communication skills. This young man is a keeper.

Greeting from the Dean of the Medical College

The event was lovely. A large sign welcoming us personally was hung on the wall. A special plaque was given to us both thank us for our help. So many families had traveled from very far away, to see us. We got to meet them all, one by one, and ask some questions related to their lives.

For example, one, Jitendra, is 14 years old. He receives money from Save One Life and spends it on education and treatment. He lives 150 kilometers away. His father works on a farm, and must travel far away daily. The father had an intense countenance, a combinaton of fear and desperation.

Laurie with young beneficiary of Save One Life

When I asked him what one thing would make your life easier (expecting him to say free factor) he said emphatically and without hesitation: a vegetable selling business, to open a roadside vendorship, to be near his son. Awesome answer. He needs 50,000 rupees to start ($1,000). Through out chat we learned that a storm ruined his house and he now lives in a tent!! He only earns $100 a month. We stressed to our partners that they must inform us when disaster strikes our beneficiaries! We can help this man, and I promise him we will get this money for his business.

We took photos with each child, recorded their progress and needs. The dean of the medical college came in to meet us, and greet the children. After a few hours, a take-away lunch was served, and we set out to do some home visits. One obstacle to our work is language: communication is really confusing here. India has about 70 languages, so when we travel to different cities, we have to speak English, translated into Hindi, translated into the local language and then back again. So three people are needed to ask questions and translate! When 2-3 people are speaking simultaneously, explaining, talking over each other, questions and answers are easily misunderstood. We must be über careful when interviewing so correct information is taken. Some things are almost a given and are never misconstrued: most families earn about $10- $40 a month, nothing when you think of what they have to buy. And add hemophilia on top of this… life is a day to day struggle to survive.
This is one reason why education is paramount. When you meet a child in the States, you often ask, “How old are you?” In India, you must ask, “What class are you?” Education trumps anything else in their young lives. Education is a key to a future. This is one reason why we stress that Save One Life monies be considered for funding education costs.

Bikram wants to be a doctor

We head out eventually to visit Bikram, a young man who is sponsored by Save One Life but who needs a scholarship. He desperately wants to attend medical college and needs funding to study for one year, called “medical coaching,” so he can pass the exams to get in. Bikram lives in a clean, new building, but he and his parents live in one small room of this. There is nowhere to cook. There is no bathroom, just a public one down the hall and out a door. There’s one bed and you must use your imagination to sort out where do they all sleep? Bikram never smiles the entire time we visit. I compliment him on the colorful motivational charts I see on the wall.  Set goals. Listen to directions. Believe in yourself.

I tell Bikram we will get him the $1,000 he needs for coaching. Somehow. Believe in us. The mother has tears in her eyes when we explain to her we will help. She offers us some simple food, in the customs of Indians when you come to their home. It is always startling humbling when you are in the homes of the poor, sometimes the poorest of the poor, and they exhibit more  graciousness than just about anyone you know.

Street in Cuttack

On Friday morning, we head to Cuttack, a suburb of Bhubaneswar, about an hour away. It’s a very colorful ride, past temples, roadside vendors, and fruit stands. The streets are a mad scramble packed with cows, bicycles, motorbikes, autorickshaws, trucks and cars. The hospital is a public one, so it is exploding with people. Chitta, Usha and I have to shoulder by a crowd to get in to the hematology ward.

Deepak needs immediate surgery
Our goal was simply to say hello to the director of hematology. He has so many people waiting in line we feel guilty being ushered in. We chat a bit, snap some photos, and then head out to the wards. While at the wards, we come across a huge and shocking surprise. A 16 year old boy, Deepak Das, propped up in a sad bed, flanked by his worried parents. His right thigh is grotesquely swollen, causing his right foot to drop; the skin is stretched till it looks like it might explode. It’s a pseudotumor, Dr. Sudha explains, and he needs an amputation ASAP. This is a complicated case and we urge the staff to consider bringing him to an HTC. They have no factor to do the operation and the operation has been postponed but the boy is now critical. We pledge the factor and any money that can help. The mother starts to cry, and the father immediately sets to praying intensely. India’s culture does not include hugging in public, but this mother, so grateful leans into me and we hug.

Usha, our amazing liaison for Save One Life
Our last city is Pondicherry, in the south, a short drive from Chennai. We flew to Chennai for two days to attend the 25th anniversary celebration of the Chapter, where Usha is from. She is delighted to be home. But Sunday morning, back on the road with a two hour drive to Pondi. Pondicherry is a former French colony which still retains a French flair about it. It’s pretty and quite different than the rest of India. It has temples, museums and a botanical garden (you know this if you watched Life of Pi). It seems to me there are however more stray dogs here than anywhere else. India is ravaged by stray dogs much as the dogs themselves are ravaged by fleas, ticks and skin disease —ubiquitous, yellow mutts with the mandatory
curly tail, as though they were all sired at one time by a common set of parents. Half are lame; many are lactating. They are starved, wary and are everywhere. They set their eyes on me, Usha says, because they know I look different and they are hoping for better treatment from a foreigner. They do tend to approach me and follow me.


We meet with a large group of children at the clinic, and do a home visit in the evening. on Monday, my last day in India, we go to the beach with Dr. Nalini, who runs the clinic and the chapter. Usha and I stand at the Bay of Bengal, enjoying the fresh sea breeze and watching the European tourists. We take in an ashram, where people go to study yoga, and best of all, an ancient 15 century Hindu temple. We removed our shoes, and walk in gingerly, speaking in hushed tones. I witnesses how Hindus pray; their unusual gods, with elephant and monkey heads, blue faced, adorning the walls.  I joined a line to enter a sacred room, where everyone was praying. An oil lamp was brought out by a half-naked Indian, and devotees waved their hands in the flame, then touched power to their heads.

A blessing from an elephant

Exiting, I was surprised by an enormous pewter-colored elephant, ornamentally painted and sporting an ankle bracelet, just outside the temple door. When you offer it a coin, it snatches it then touches your head in blessing. Not having any rupees, I think I gave it a New York City transit coin.

We were tired after the day; the weather was steamy and humid. We drove back to Chennai, straight to the airport, after saying our good byes to Nalini. We stopped at a roadside place that was good, and ate some Northern Indian food and masala tea, summing up our to-do list for the week. I was kind of happy to be back in my traveling clothes—black pants, white sleeveless hiking top—but sad to leave. On this my fourth trip, I am used to India now, comfortable. I never get sick, and love the food and people. I do get mentally drained trying to sort out the languages, cadences and interruptions, but am ridiculously pleased overall with how Save One Life programs are functioning and are actually making a concrete measurable difference in patients’ lives.

Back towards Chennai and the city was crazy bustling at night. Thousands of roadside vendors, shops, motorcycles, autorickshaws. It’s a sensory overload. I am in awe at the amount of humanity in one city. And yet the airport was all but empty, giving Usha and me the time and space to say a bittersweet good bye. We are great partners, and compatible traveling mates. I guess it all seems easy when you have one mission, one goal. Much to think about on a 24-hour ride back to my world.

Greeting from the beneficiaries in Pondicherry


Mumbai: Hemophilia Camp, “Children Free of Pain”

Welcome to Camp HemoSOL! 

Mumbai is a megacity
fringing the Indian Ocean, an ancient seaport that once beckoned to European
ships and sailors seeking to trade spices. It was called Bombay then, a major
city during colonial times, when India was the exotic jewel in England’s crown
of captured countries. Now it is the financial heart of India, the largest
democracy in the world, a fascinating contrast of topography, culture and quality
of life. Especially in Mumbai, where Slumdog-Millionaire shacks sprawl like
weeds alongside million-dollar highrises owned by billionaires. 

Traiditonal greeting
Mumbai: a city of contrasts




And here I am,
sleeping in a canvas tent on the outskirts, showering with chilly water each
morning, housed with about 40 boys with hemophilia who are attending Camp
“HemoSOL” for three days, organized by the Hemophilia Society Mumbai Chapter,
which cares for an astounding 1,250 persons with hemophilia. The air is sultry,
mosquitoes swarm at dusk, sweat seeps out of pores and dampens our clothes. But
the real atmosphere is joyous and electric, as these children generate megawatt
smiles and endless laughter. Camp is where they come together as friends, play,
swim, strategize at chess even while Anand, the reigning world champion and
from India, battles a Norwegian in Chennai, where I’ll be next weekend.

Chess is a national passion

We took a two-hour
tour through Mumbai’s clogged arteries and Indy-raceway-like highways to
finally arrive at the quiet and remote campground—really a 16-acre function
facility for weddings and retreats. Rustic by US-facility standards but very
nice for its purpose here, the grounds host tents, a dining hall, an activity
center (complete with a real, taxidermed Bengal tiger), swimming pool. The
tents are roomy, with electricity, a bathroom and even a TV. Behind the
facility snakes a river, to where goats clip-clop for a drink or bath.

Applauding winners of arts & crafts

Many of the campers
are enrolled with Save One Life, the nonprofit I founded to provide sponsorship
funds to individual children with hemophilia in developing countries. I’m
delighted to meet them again, three years after I last came. This is my fourth
trip to India, and I am definitely feeling at home. No longer am I disconcerted
by sights and sounds, which many of my friends call “an assault on the senses.”
No… this is India; brash and bold, busy and beautiful. Yes, there is a staggering
amount of poverty that challenges me literally. How to describe what I see? But
it is a country that has always welcomed me, and appreciated everything I have
ever tried to do to help.

Team Dream Killers create
an HTC out of art supplies

We donate a large
amount of factor to India each year, and now have over 500 children enrolled in
Save One Life. India is the country with the most number of our beneficiaries.
Why? Well, it has one of the highest populations of people with hemophilia; but
it is also a very productive and efficient hemophilia society— the Hemophilia
Federation (India). It was a good risk to launch our experimental program there
in 2001, and it has not disappointed us.
So back to the
Mumbai boys. I have rarely seen such a large group of boys with hemophilia
living in a developing country in such good shape. This is no doubt due to the
success of the Mumbai chapter in educating the boys and their families, and
providing good medical care, including factor. They stand tall, have good
joints and almost none walk with the crooked gait that see-saws the body.
Mumbai has a good chapter but also good hospitals, physicians and access to
factor.
Boys everywhere love pooltime
Judging the arts & crafts

The boys were all at
camp when I arrived Friday afternoon with Usha Parthasarathy, our Save One Life liaison, and Indira Nair, chair, mother of an adult
son with hemophilia, both mothers of grown sons with hemophilia. Also with us
was Balshiram Gadhave, who has
hemophilia, is president of the chapter and in many ways is a driving force
behind the society. We landed, settled into our tents, took a walk around the
grounds, met the boys, and had buffet lunch or moderately spicy rice, chicken
and roti (bread). Over the next few days we would have a self-infusion
workshop, arts and crafts as the boys in their teams each created a table top
hemophilia treatment center out of random items, swim time, food glorious food
(if you haven’t had authentic Indian cuisine you have not lived! Try the
desserts especially), a disco evening where we all danced the night away, a
talent show in which the boys put on excellent skits related to hemophilia, and
an awards ceremony! I received a beautiful award from the Society, and a card
signed by all the boys at camp. One sweetly wrote: “Madam Kelly, you always
mingle with the hemophilic boys lie cream with milk.”

The Save One Life kids at camp

And I was surprised
when they presented me and Balshiram with cakes for our birthdays! Mine was
October 28, his was that very day. Practical jokers all: my candles wouldn’t go
out no matter how hard I blew. They were trick candles!

The highlight of the
camp was a visit by distinguished visitors: Yogacharya Dr. Hansraj Yadav,
professor and Chair of Yoga at S.P. Jain Institute of Management and Research
and two colleagues. Dr. Yadav is a guru, who taught the mesmerized boys
breathing and physical techniques to relax themselves, to re-energize and to
redistribute energy throughout their bodies. Yoga can help with stress and pain
management. It was excellent and each child followed his lead as he
demonstrated 10 simple techniques.
HFI Logo and Slogan

Camp took place
during the Indian holiday Diwali, the festival of lights. At night streets are
lit up, with lamps or candles. At camp, we concluded Saturday night with
fireworks after our ceremonies. These exploding stars reflected in the beaming
faces of so many boys who sincerely expressed their appreciation to the
sponsors who give them $240 a year in sponsorship funds, to the volunteers who
give them factor and education about hemophilia and to one another. They are
all like brothers. They gazed at the fireworks, arms about each other,
comfortable, secure and with a bright future.

Happy Diwali!
Sudha with a Bengal tiger!
Usha and camp volunteers
Laurie with camper

Hindi temple
Prayers at a temple
Learning yoga from a yogi
Learning breathing techniques
Learning how to infuse
Success!
Interview for Save One Life
Happy Diwali!
Supplication
Indira and Usha on beach
Pooltime!

Advocacy in Action: India

 While we celebrated our own Washington Days at
the end of February, and have been observing March as official Hemophilia
Awareness Month, India has long been a leader in hemophilia advocacy. With a
projected population of over 100,000 people with hemophilia, and only about
15,000 registered, people with hemophilia suffer and even die regularly in
India. India has been lobbying its government for years, and finally the
efforts are paying off, despite competition for attention from infectious
disease groups, high profile crime, and politics. It’s a miracle hemophilia is
noticed at all, unless you meet the people behind the advocacy. I’ve been able
to work with them via Project SHARE and Save One Life and they are smart, savvy
and know how to get things done.

  But progress is slow. Below is a recent article
about hemophilia care in the state of Maharashtra.

“Despite promises, 3,000 hemophiliacs in state
await medicines,”
by Ananya Banerjee 
Posted online: Mon Mar 04 2013, 05:25 hrs
Months after the Maharashtra government told the
Bombay High Court that it would provide free medicines to hemophilia patients;
the 3,000 registered hemophiliacs in the state are still awaiting the clotting
factors that are essential to any person suffering from the disease. Hemophilia
is a genetic disorder, which impairs the body’s ability to clot blood, thus
increasing the possibility of the patient bleeding to death.
 
Currently, the hematology center at KEM Hospital
gets the bulk of hemophilia patients, while a handful go to the other civic-run
Nair and Sion hospitals. The factors at KEM are purchased by the Hemophilia
Federation of India and disbursed at the centre.
“The government has made several promises to
support hemophilia patients, but next to nothing has materialized. The disease
is under-reported, especially in the rural areas. Many die due to lack of
access to treatment. Other states such as Assam, Uttar Pradesh and Madhya
Pradesh are giving free factors to patients,” said Dr Kanjaksha Ghosh, director
of the National Institute of Hematology.
Replacement of the factors VIII or IX, essential
for preventing continuous bleeding, cost a patient a minimum of Rs 9,000 ($165)
at one time. A severe hemophiliac may require as many as 1,50,000 units of
factor per year.
“The government has not made any move on providing
free factors to us. We have earmarked Rs 50,000 from the hospital budget to
treat haemophilia patients. This is, however, not enough,” said Dr Sandhya
Kamat, dean of KEM Hospital.
While the state currently has 3,000 recognized and
registered hemophilia patients and the city has 1,500.
The Haemophilia Society, Mumbai chapter, filed a
PIL in the Bombay High Court last year, demanding better treatment mechanism
for hemophiliacs and make treatment affordable and accessible. The matter is
still pending in court.
Meanwhile, the state, which launched its ambitious
healthcare scheme, Rajeev Gandhi Jeevandayee Arogya Yojana (RGJAY), last year,
has not managed to treat any hemophilia patient even after completing over
25,000 surgeries.
 “RGJAY
is not the appropriate model for hemophilia treatment. For every infusion, the
frequency of which may vary, a patient has to get admitted to the hospital and
wait for factors before the treatment can happen. This is a waste of resources
and the money, which the beneficiary is entitled to,” said Paresh Parmar,
secretary of the Haemophilia Society, Mumbai chapter.
Ashok Verma, founder of
Hemophilia Federation (India)
“What is required is setting up of centers across
the city and the state with trained staff and availability of clotting factors.
While the government has been assuring us these for a long time, nothing yet
has been done,” Parmar said.
I’ve been to KEM Hospital and know the Haemophilia
Society, Mumbai Chapter. They are miracle workers, helping hemophilia patients
with so few resources. Project SHARE is proud to continue to offer factor when
possible, while the local chapters and the national Hemophilia Federation (India)
continues to lobby the government for support. We wish them continued success.
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