September 2010

India Day 6: Water and Sun

Thursday, September 30, 2010 Hyderabad
Resting at the home of Dr. Prasad in Hyderabad, 10 pm. We got up early today, at 5 am, readied ourselves, then hit the road by 6 am. Off to Hyderabad. It was a 5-6 hour ride, but it seemed to go by fast. We all dozed at some point, as we were so tired from the day before. We passed long stretches of fields, and many villages, all blurring by. Buffalo pounded the shoulders, trucks with various loads lurched by and various roadside shops zipped past.

But let me fill you in on yesterday, which was amazing! Still in Vijayawada, Usha, Krish and I awoke, had breakfast, then jaunted off to a theme park with 45 Indian kids with hemophilia. I had just met these kids one-by-one the day before in more formal circumstances, at the clinic of Dr. Maganti Prasad, the dedicated orthopedic surgeon who cares for them and doubles as a hematologist when needed. All his hard work for the past 20 years showing today: the children, all who have had limited supplies of factor in their lives, were able to attuned the theme park without wheelchairs or crutches, and for today be normal little boys. And what a day!

The sun scorched the grounds of the park; it was 90 degrees and climbing, and humid. We arrived just as the yellow bus pulled up, the kids all packed tightly in. Out they poured, each one wearing the polo shirt with the society logo on it. They were excited, smiling, energetic. So were we!

It took a while to get everyone registered, and we pretty much had the whole park to ourselves. This is a beautiful place with a Thailand theme to it: indeed it’s called Haii Land. Colorful, larger than life, with plenty of rides and an entire water park. The kids headed for the water park first. I became less and less strange to them, as they forgot about our differences and focused on the fun. Many kids changed into bathing suits and waded in: none of the kids knows how to swim, as they never have access to open water. They got more daring as each one took a step in, and pretty soon everyone was splashing and playing in the water. Down the slide flew one little boy, then another! Looking about, you almost couldn’t tell anyone had hemophilia!

“Wave Pool!” we heard the loudspeaker shout! And the kids ran over to the artificial wave pool, which was wonderful! Colorful, enticing, and exciting: the lagoon featured a wave machine and the kids played here the most. Even Krish, our Save One Life program assistant, went in and later told me it was his first time in the water like this! Even the moms changed out of their saris and into modest swimsuits and took a dive. The sheer joy of the water brought out the child in everyone.

“Rain dance!” and everyone headed over to a pavilion that spewed water overhead, with very loud, pulsating Indian music. Soon the kids were dancing in the “rain.” After 40 minutes, lunch, which featured delicious Indian dishes. The kids got their second wind and then headed to the mechanical rides: Carousel, train, flying elephants and go-carts. In the midst of it all, the sky broke loose with a passing thundershower. Everyone was drenched but no one was dampened! The moms ran for cover and we all crowded into an arcade until the storm passed. It was a good time for a factor check—about eight boys were having bleeds. Dr. Prasad’s experienced technicians had come, and gave the boys their infusions among the video games.

The sun returned with much cooler air, though I was already sunburned. The boys requested the Pirate Ship ride, and everyone piled on. It was thrilling for them! They screamed and waved their hands while I snapped over 750 photos that day.

It was well passed our time to leave, but… Dr. Prasad allowed one more ride: the parachutes. Even he and I jumped on and we laughed like kids ourselves. What a great time! Everyone was completely spent when the day was done. We had snacks, and I received a beautiful gift from everyone. But it couldn’t even compare with the gift of simply being with them.

It’s hard for those in developed countries to even imagine the lives of some of these kids: try “Slumdog Millionaire” and throw in a chronic disease that cripples, that keeps you in agony all night long, that can kill. A day like this, in a posh, immaculate amusement park, with good friend, good food, and thrilling rides—the joy cannot even be measured, unless we can somehow measure the wattage of all the smiles.

India Day 2: Slumdogs to WHO?

Day 2 – Saturday, September 25, 2010

Today we started with a hearty breakfast and then headed for the slums of Delhi to meet with two families. Usha, Krish and I met with our colleague Indira, president of the Delhi chapter, HFI, who would guide us. But first a bit of sightseeing. Krish had never before been to Delhi! It’s a marvelous city, alternatively orderly and clean, then also, like most big cities, chaotic, noisy and dirty. We toured the India Gate, a stately monument to the fallen Indian soldiers of several wars.

The first family we visited was in a ramshackle riverside slum, sheltered underneath a soaring highway. A sea of blue plastic tarp draping the tops of the many shanties rippled. Parking on the roadside, we stepped gingerly on a beaten path littered with dog, pig and human excrement, and plastic bags, garbage and paper. A ghastly smell rose from the heavily polluted river, causing Krish to cover his mouth with a handkerchief. Up ahead we could see small children scuttling about, a few teens, and many women: bathing the children under an open spigot by the riverside, hanging laundry, cooking over open fires or carrying supplies home. The dwellings are cement blocks, covered by corrugated tin sheets and covered by the blue tarp to prevent rain from dripping in. An enormous sow rolled over in the mud to allow her numerous piglets to suckle while strange looking stray dogs sauntered by, short-haired, wary, thin, and dirty.

I generate a lot of curious stares, but you know what? If you smile and say “Namaste,” putting your hands together in prayer (the traditional greeting) almost everyone smiles. One young girl—so hard to believe she lives there—not only smiled but also spoke English to me. The narrow, crooked alleys eventually bring us to Indu’s house. She is a tiny woman, maybe only 4.5 feet high, 80 pounds, who is the single mother of two boys, Surender and Sikander. I had met Surender in 2005 during my last visit. He never smiled, and had a traumatized look about him. I never forgot him after that first visit. He still had this look, like he could never quite figure out what was happening and who to trust. His younger brother is the opposite. He warmed up quickly and smiles abounded.

The family was happy to have us come, and also shy. Their home? One room, only 8 feet by 6 feet. I think it is to date the smallest dwelling I have ever entered. I couldn’t stand up all the way. One small square cut into the concrete allowed a rusty fan; that was all the ventilation. A plank served as a bed, covered with a blanket. I could barely fit myself: yet all three live there. Surender is suffering from severe synovitis in his left knee, and he lifted his pant leg to show me; his knee is hugely deformed. It was also hot; he was having an active bleed. We gave some gifts, snapped some photos and chatted about the boys.

When it was time to leave, the family walked us back to the road, with me holding hands with little Sikander. To the left, and covering the length of the entire slum, ironically, is the World Health Organization’s massive, modern, city-block size building. WHO of course is responsible for monitoring and improving the health conditions of developing countries. Just one hundred feet away, its gleaming windows, satellite dishes and massive height dwarfed the pitiful slum. A pretty employee scurried into the building, ignoring us and the ill-dressed impoverished people with us. To add insult to injury, the guards yelled at our driver for daring to park in their parking spot, which of course was empty, save us! Welcome to the world of institutionalized development.

We journeyed on to the next home, where my sponsored child lives. This is my third trip to see Suraj Tanti and his family. I first met them in 2001 and we have maintained a wonderful relationship since. The father, Anil, writes to me several times a year, keeping me updated with the children’s progress, and sending their photos. There are three kids: Suraj (19, but who looks about 14)), Chanda (14) and Shashi (12). Their mother Anita, ever smiling, was also present. Shashi inside the 10 x 10 ft dwelling

We ambled down the broken cement path to their home, populated by random goats, and lined with open run offs, through which ran dirty water and sewage. Despite living in a slum, the Tanti family keeps itself immaculately clean. I actually knew some of the way to their house, and recognized the familiar cement walls, wire fence and neighborhood. Their home is also a one room concrete dwelling, with tin roof and nothing inside but a hard board to serve as a bed— no mattress to ease throbbing joints— and one chair. That’s it. It’s the size of a closet.

Since this was my third trip, and since we’ve maintained contact through the years, all shyness has melted away and we are now very comfortable with one another. “How are your children?” Suraj asked in perfect English. That made me happy! Shashi piped in, “And Jak?” (our terrier) We hauled out the photo albums they keep under the bed, and looked through all the family photos I have sent them through the years.

Shahsi was having a bleed, but never complained. I left factor with them, about $10,000 worth (equal to over ten years salary for Anil), as I know the father is highly responsible. A local doctor can administer when needed. This saves them all a very long trip to the hospital. We then took a short walk to the little shop where Anita sells candy, small cakes and pens. It earns next to nothing; Save One Life sponsorships really help keep them going.

Krish videotapes my sponsored India family

We had a bittersweet good-bye: I was so happy to have visited, but we knew it would be some time before I returned. Indians normally do not hug in public, but we made some exceptions for the American guest!

We relaxed a bit back at the house, and took lunch with Magi, and her adult daughter. All the food is delicious, including the wonderful staple roti (bread), and there is nothing like Indian desserts—all sweet and milk-based. The family’s hospitality puts a great face to India.

After such a day, we were not done still: Usha and I packed up, parted with many good-byes, and headed out to catch the 6:00 flight to Trivandrum, on the south western tip of the sub-continent. We flew for four hours, an easy flight, arriving at 10:00 pm. Tropical breezes greeted us, along with Joe, the tall, handsome son of George Tharakan, a man with hemophilia and one of the founders of the Hemophilia Federation. Off to the hotel for a long night’s sleep.

India is an amazing country with huge potential. By all rights it could be a superpower, given its young and increasingly well- educated people, which is one of its best resources. But it’s hampered also by its huge population, much of which lives under the poverty line, and by a government that has other priorities. We’re seeing progress in hemophilia, at the government level, and also at the patient level, through programs like Save One Life.

The India Odyssey Begins

Indira, Usha and Krish

I feel like I am in the movie Eat Pray Love. India: where eating is a pleasurable ritual to welcome a visitor like me, where praying is sometimes the only thing left when you suffer a bleed without treatment, and where love abounds when we bring donated factor and funding from Save One Life. It’s Day 2, and I am in Trivandrum, on the very southern border, right on the Arabian Sea. A thundercloud is rolling in, and I expect to be deluged with a monsoon soon.

I’m here as part of a site visit and check up for our nonprofit Save One Life. This is a child sponsorship program for those with hemophilia in developing countries. Despite all our best efforts and our lobbying initiatives, we simply cannot wait for governments to one day buy factor for its bleeding disorder patients: children are dying and we can do something about it right now. Our approach at Save One Life is to match sponsors in developed countries with impoverished children and adults in need in developing countries. I’ve seen it over and over in our 11 partner countries: $20 a month can actually change a life for the better.

With “Magi,” our gracious host

India was our first country to enroll, and is our biggest country partner, with 315 beneficiaries. I’m trying to visit as many as possible. I’ll be visiting about 10 cities in 17 days, logging over 19,700 miles by plane, auto and even overnight train. Totally worth it.

I arrived Thursday night after a smooth 15 hours flight to Delhi, the capital, and was met warmly by longtime friend Usha Parthasarathy, mother of an adult with hemophilia, and our Save One Life liaison in India. Usha worked for many years with the Hemophilia Federation (India) and seems to know everyone. She is dedicated, tireless and totally passionate about helping to improve the conditions of those with hemophilia in India.

We were so fortunate to be able to stay, free of charge, at the lovely home of the mother-in-law of Dr. Shipra Kaicker from Brooklyn, New York, whom I met at our fundraiser in NYC earlier this year. She sponsors a little boy in Delhi (whom I met) and her generous offer helps us to save money. She also visits Delhi and helps patients there medically. There are so many angels like her and Usha in this community, I feel like I live in heaven!

with SOL beneficiaries at Lions Hospital

On Friday we visited Lions Hospital, and were greeted by my dear friend Indira Venkataraman, a 78-year-old who also seems tireless in her quest to help her patients. Indira’s adult son with hemophilia had just died earlier this year, but despite her grief, Indira has not nor will ever quit on her patients. She is always in the clinic, always pouring out her love and concern to the boys.

Krish supporting Andy Matthews’ blog!

With us was Krish, a 36-year-old with hemophilia from Chennai, who has become an important link to all beneficiaries. Krish is the first international employee of Save One Life—and I foresee the day when we are employing people with hemophilia in many countries to run our growing programs. Krish has a full time job in advertising and marketing, but spends many nights each week, working up till midnight, to help us compile reports on individual patients, ensuring funds are distributed and coaching chapters on how to implement the program. I was thrilled to meet him, and was so impressed with his intelligence, education and above all, dedication. He is so passionate about Save One Life! His enthusiasm really gave me a huge energy boost and affirmed that all our hard work to make Save One Life reach the poorest of the poor on this earth has been effective.

With Amit and mother

A group of patients gathered to meet us, among them the child I sponsor, Suraj Tanti. As this is my third trip to India, it was delightful to see him again. The initial awkwardness of meeting from years past has melted away to a feeling of reunion, joyful and enthusiastic. Usha, Krish, Indira and I spent the afternoon meeting with each family individually, taking photos, chatting and answering any questions they had. Yes, it’s very time consuming—a combination of doing social work, journalism and administration. But what a joy, to hear how sponsorship funds have helped keep a young boy in school, or helped a family get medical treatment.


One of the boys I recognized instantly was Jittender. I met him first in 2005, and he had a haunted look to him. We immediately got him a sponsor, but the sponsor eventually couldn’t keep up the payments. Jittender lost his sponsorship for a while. This really bothered me. Recently, our own chairperson, Chris Lamb, sponsored him, and Jittender this day looked great, and happy. He has put on weight, his joints look good and best of all, he is going to tourism school! He has a future.

After all the interviews, it was time to return to the house, change gears and then go to the Annual General Meeting of the Hemophilia Federation. Delhi is about to host the Commonwealth Games, and I have never seen so much construction! We maneuvered through rush hour traffic, and arrived at the event location. It was wonderful to see the heads of India’s 65 chapters, many of whom I have met over the past 10 years, in India and overseas. It was such a happy reunion! Dr. Maganti, Raghu, Siddhartha, Dr. Devila, Dr. Suresh, Dr. Ranjani and Dr. Ghosh, Rashid… I only wished I could have stayed longer.

After an opening by Mr. Roy Chowdury, the chairman, I gave an overview to all the chapters about Save One Life. While many chapters are now enrolled with us, eventually we’d like all chapters enrolled. I presented the statistics: 315 beneficiaries enrolled, which means we are transferring over $60,000 dollars to India annually. At least 85% of this goes directly to families; the rest goes to the chapter to help offset administrative costs. Patients get money for food and transportation (always a major problem in developing countries). Krish also gave a report on how the program is implemented, how rigidly accountability and transparency are maintained (meaning, Save One Life is only for those nonprofits that can uphold our very high standards). Afterwards, Krish said he was deluged with requests to join by the Indian chapters. That’s good news, but first, we realized, we must get the 200 children on our waiting list sponsored. You can see their photos and names on our website at

With Priyanka

One of my greatest thrills was to finally meet in person someone I’ve been corresponding with for months about solving problems. A beautiful young Indian girl rushed over to meet me… Priyanka, a brilliant university student with a major in psychology, who also happens to have VWD. We had been planning to meet for a long time, which was finally here. We both felt like it was a dream, come true. And it was! Priyanka hopes to one day work with HFI when her studies are complete.

Our first full day in India was busy and satisfying. We had a late night meal with “Magi” (Mom), Dr. Shipra’s mother-in-law, and crashed… only to be awoken at 2 am with monstrous pipes being dropped, one by one by one, just overhead as Delhi prepared for another day of laying the foundation of a huge highway. Delhi… the city that never sleeps!

Please check in later! Remember this is a 19 day odyssey and I will be posting amazing photos, stories and hopefully videos about my journey through India…See this photo of a preview and check back in a day or so…

From the Philippines to New Jersey

We were really blessed to have a very special visitor last week: Andrea Trinidad-Echavez from Manila, the Philippines. Andrea has von Willebrand disease, as does her third child, Star. She manages the best she can in a country that buys no factor products. Imagine! We’ve tried to help her when we can through Project SHARE. But at some point, the Philippines must lobby to get legislators to approve a line item for factor.

If anyone can do that, it’s Andrea.

She has a journalism background, and also knows scores of high-level politicians. With her charm, poise, intelligence and fierce determination, I believe the Philippines will eventually join the countries in the developing world that buy factor. It’s possible! I point people to Honduras, one of the poorest in this hemisphere, which buys product.

Andrea and I met in October 2008, when I visited the Philippines. I was so impressed with her skills, and was delighted that she could come and stay with us. It was just cool enough that we could have a fire–her first ever in a fireplace!

Our first stop was a visit to see Wendy Owen at New England Hemophilia Association, for a meeting about NEHA’s successful lobbying strategies. Then back to Georgetown to meet with our staff. Then down the hall to meet with the ladies at Save One Life to discuss how the program is running in the Philippines.

Andrea discovered our puppet Bob, created by Wyeth (now Pfizer). Bob is a teaching puppet, and you can look into his joints to see a bleed, or check out his port. She loved it and wanted to bring it home to use with the kids.

The next day, Andrea and I were up early to fly to New York City, her first time there! Bob garnered many stares as we sat on the plane, then took the tram through JFK! One passenger walked up and said, “Wassup!” to Bob, who of course didn’t answer!

I took a rental and we drove through NYC to New Jersey, for a visit with Octapharma. We were both interested in this meeting as Octapharma just this year had “wilate,” their plasma-derived VWD product approved. We met with sales reps and executives. Then on to our hotel.

On Thursday we met with the global staff at Bayer Healthcare in Wayne, to speak about factor donations and other projects we have. After that, Andrea took a car to meet with NHF CEO Val Bias, at a restaurant. I had a bad feeling about being in a rental, in NJ, and needing to get to JFK at rush hour on a cloudy day. Sure enough, if you followed the headlines, a tornado blasted through Queens, only about 15 minutes before I arrived. I was on the Van Wyck expressway when it tore through. It was amazingly powerful. When I passed by this over turned tractor-trailer (one of three, all in the same place!) the entire expressway looked like an angry giant had rampaged through it and lopped off the tops of trees, stripped branches completely off trees and crushed cars. Glass, branches, cars.. what a mess! I didn’t get home till 5 am.
(Photo: With Cindy North of Bayer)

Andrea is bound to learn a lot from some very experienced people like Wendy and Val, and made some great contacts at the companies. We are committed to helping the Philippines improve its health care for hemophilia, but the only way it can be done it by lobbying the government. Andrea and her team now have what they need to get started.

You can read more about Andrea at her blog:

Great Book I Just Read
Great Expectations by Charles Dickens
I am ashamed to admit that this is the first Dickens book I have ever read. This is a classic: the story of Pip, an orphan, who lives a difficult life but who one day receives a fortune, from an unknown benefactor, to make him a “gentleman.” Pip is rich, but the humble boy becomes spoiled and vain, and turns his back on those who loved him most. The story shows how our values can change when he suddenly occupies a different station in life. Eventually he learns great lessons of life through strife, evil in others, and heartbreak; every character in this book seems to mature and grow in relation to one another. It’s a great story with timeless characters but it’s the writing–the writing is pure ecstasy, like ingesting literary Godiva’s every other page. I am weighted with words now, beautiful images, witty lines, twists of phrases. I didn’t know writing could be so mesmerizing and purely pleasurable. Four stars!

Hemophilia as Reason Not to Do Forcible Blood Draw by Police

This is a new one for me: a lawyer in Massachusetts references hemophilia as a reason not to do forcible blood draws on suspects arrested for drunk driving.

In a May 17, 2010 article, Stephen Neyman writes that there’s a “disturbing trend of allowing police to forcefully draw blood from drivers suspected of being drunk.” He doesn’t want us in the Bay State to go the way of Missouri, which allows police to draw blood without a warrant.

He points out that legislators and law enforcement personnel feel that fear of a needlestick will make people think twice before getting drunk and then driving. He quotes Kane County (Ill.) State’s Attorney John Barsanti: “People will not drink and drive if they think they’ll have a needle stuck in their arm.” Well, they know they may wrap around a telephone pole too but it doesn’t stop them from drinking and driving! Many drunk drivers refuse the breathalyzer, making it harder to convict them. “So it’s understandable that the state would see forcibly taking such evidence as a good solution to increasing their drunk driving conviction rate,” Neyman writes.

But Neyman is not sure forced blood drawing is the answer: doesn’t it interfere with the Fourth Amendment? (And what is that anyway?)

Neyman rightly points out that police officers are not trained or necessarily skilled in blood drawing. Here’s where he uses hemophilia: “There could also be harm to suspects who, for example, have severe hemophilia and cannot stop bleeding once their vein is punctured. A medical professional would know how to handle a situation involving this kind of special medical need, but a police officer with minimal training might not. So the practice of forcible blood draws could put suspects at unreasonable risk of harm.”

I am not sure how many people with hemophilia get arrested for drunk driving each year, but it can’t be many. And I don’t think there’s a problem with needlesticks. Applied pressure usually stops the bleed. But yet, a rough officer or unskilled one could tear up a vein. I just think don’t think forced blood draws would really matter or deter anyone who drinks and drives. Not from fear of the needle; when they are drunk, they won’t feel it anyway.

But thanks for thinking of hemophilia, Mr. Neyman!

See, “Forcible Roadside Blood Draws in Drunk Driving Traffic Stops on the Rise Nationally”

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