October 2010

Making Sense of Insurance Reform

Laurie Kelley October 25, 2010

PPACA—mean anything to you? It’s the new Patient Protection and Affordable Care Act, the historic health care reform bill that was signed into law earlier this year. It’s the thing that has the upcoming Congressional elections electrified. It has some calling Obama a socialist, others calling him a savior. Beyond the rhetoric, though, how does it or will it impact those with bleeding disorders? (Photo: Kaaren Zielinski)

That was the topic this weekend in McLean, Virginia, for the Hemophilia of the Capital Area’s annual meeting. We brought “Pulse On The Road” to the meeting: POTR is a two-hour symposium dedicated to explaining health care reform, and answering audience members’ questions.

We opened Saturday morning with a story from Kaaren Zielinski from New York City. Kaaren’s story was profiled in the 2008 edition of PEN’s Insurance Pulse. It was so compelling that we asked her to share it with the audience. She had faithfully read her insurance policy annually, but the one year she did not… it changed. Previously she had no cap and bought factor whenever she needed for her son Michael, who used quite a lot; that year, the policy changed, a cap was installed and they blew through it in no time. In fact, they hit their limit three times before the insurance company finally told her! Too late—she now had no insurance. Kaaren noted that while the new PPACA will no longer allow caps, to our benefit, we should still maintain a vigilant watch over our policies. No one knows quite how the Congressional chips will land in another week, or how insurers will react to the new law over time. Everyone must read their policy and keep current with it.

James Romano of Patient Services Inc. (PSI) then gave a great overview of the PPACA and what we can expect in the coming years as it is phased in. Listening to him, I realized that there is an overwhelming amount of things to know, and that audience members could probably use a short glossary of terms. We all would like to think that insurance problems will get easier with the new laws, but James assured us that this is just the beginning. Again, the message is we all need to be vigilant and read, ask questions and never become complacent.

Community Forum followed for the next hour. Joining us were: Mike Bradley, Vice President, Healthcare Economics and Reimbursement for Baxter BioScience; Kisa Carter, director, Public Policy at HFA; Ruthlyn Noel, director of public policy, NHF; Mary Jane Berry, social worker at Georgetown University Hospital; and Jim Romano. The audience asked all sorts of questions related to health care reform. One mother asked what was the difference between annual caps and lifetime caps—great question. Another asked about physical therapy—would this be limited under the new reform? Someone in the back asked about whether in retaliation insurers would look to limited brand of factor access, or maybe limit homecare options? After all, someone has to pay for this and insurers will attempt to shift costs and expenses away from themselves. This stirred a lively debate for the hour.

The questions gave the panel ideas for the next time we meet, which will be in 2011. We hope to bring six more Pulse On The Road events to various chapters.

We closed the meeting with a motivational talk by Andy Matthews, long time friend and colleague. He stressed the need for teens especially to get more involved in their healthcare insurance management, but also for everyone not to see hemophilia as anything but a gift, a gift that allows us to connect as people, a gift that allows us to put life in better perspective and to see that even the heath care concerns we have make us stronger, and better equipped for life’s challenges. And Andy would know, as his story is so compelling.

The overall message of the day? Keep reading and getting educated about insurance reform; never think that someone else will take care of you and inform you of any changes—you must proactively find out what changes are being made to your plan. And be grateful—no matter how worrisome the times may be, in America, we still have the best care on earth and remain the largest factor market. One thing we have more than anyone is factor, and people who are dedicated to keeping you informed about health care reform.

Thanks to Sandi Qualley and her team for allowing us to bring Pulse On The Road to her chapter; thanks to the speakers for sharing the day with us; and thanks to Baxter BioScience for funding this much-needed resource to our community.

Great Book I Read
To Kill a Mockingbird by Harper Lee.
I read this in one sitting on the plane to India last month and could not put it down. Unforgettable characters and a timeless story of childhood during a time of racism and poverty in the Great Depression. Many of you may have seen the movie, which is excellent, and completely faithful to the book. Jem and his sister Scout endure a small town’s racism during the 1930s as their father serves as defense attorney for a black man wrongly accused of a crime against a white woman. A parallel story emerges about a neighbor who never comes out of his house, and is the focus of ridicule and suspicion, even by the children. The lessons learned about how we treat each other when we think that being different means being menacing, and how belief in the goodness of human nature will eventually win. Four stars.

INDIA Day 18: 24 Hours in Mumbai

Laurie Kelley October 11, 2010

Visiting the jhodapattis (slums) on Friday night helped us to prepare for the meeting on Saturday with all the Save One Life beneficiaries. Indira Nair, president of the Mumbai Chapter, picked us up at our hotel, and we set out by “cool cab” (meaning, air-conditioned) to the King Edward Memorial (KEM) Hospital. Indira told me it’s about 15 minutes away but translated from Indian time, this meant about 45 minutes. Traffic is surreal: I feel like a lone foreign protein loose in a throbbing bloodstream of auto rickshaws, cars, trucks, taxis, motorbikes, bikes, scooters and buses that feeds the heart of this ancient city Mumbai. Everything comes slamming to within inches of sudden collision, but miraculously no one is injured. Imagine that we pay for this kind of thrill when we go on roller coaster rides!

At the hospital, a room full of families warmly greet Usha and me. What a lovely reception! They all stood and applauded, Muslims and Hindus, mothers and fathers. We sat at the front of the room, and Balshiram Gadhave, who came with us last night, acted as host and introduced us, thanked us for the funds from Save One Life, which everyone in the room receives quarterly.

Balshiram gave a magnificent motivational speech. He told us how he grew up in a rural village with no money, and hemophilia. He also suffered from polio and was left partially crippled. He didn’t even have the opportunity that these families have today: factor and support from Save One Life. He said a few years ago he couldn’t even speak English. And now? He not only survived but also is successful, because of his positive attitude. He believes in possibilities, and told the children that they have support, factor and now money, and they can be anything they want to be! When filling out the Save One Life forms, he asks the children what they want to be when they grow up and they say “Scientist!” or “Engineer!” he says yes! You can be whatever you want to be—even though these are children from one room homes earning less than $1 a day. He knows it can be done because in the room were young men who had done it. It was a very inspiring speech.

I was able to see our program in action, as each family today would be receiving their quarterly installment. I said a few words about how much American families care about their children, that we see their poverty and suffering, the difficulty in obtaining factor concentrate, of even surviving day to day. But that we are so proud of them, especially the youth like Javed and Yatish who are going to college and are the future.

Usha and I were given beautiful bouquets of flowers, and then a big surprise for me: a sari! A bigger surprise: the families wanted to see me wear it. So I was whisked off to a deserted lab room, where I quickly changed into my first sari. Now, saris are probably the most beautiful of all female attire. Every woman, no matter her shape, looks elegant in one. It is made to flatter the female form. However, it takes skill in wearing one so it doesn’t end up around your ankles! Mercifully, my colleagues pinned it to me everywhere so I felt rather propped up. When I re-entered the presentation room, the families exploded into applause, and I appropriately “modeled” it for them. Moments like these erase all differences in who we are. I was reminded of the last words of the classic American book I read on the plane ride over, To Kill a Mockingbird, after Scout says of Tom Robinson, “…he was real nice….” and Atticus replies, “Most people are, Scout, when you finally see them.” Despite our obvious differences in religion, nationality and socioeconomic status, we all can relate to certain basic human experiences—humor and celebration are some of these we all share.

Balshiram announced that we would hand out the money from the Save One Life donors, and each child happily came forward, shook my hand and received their quarterly installment, $60 US. It may not seem like much, but if I told you that you were going to get a month’s salary for free, from some kind benefactor, I am sure it would brighten your day, especially if you had to pay for factor out of pocket. Twenty-four beneficiaries came one by one, beautiful children of India, who did nothing to deserve this disorder, or the economic plight they are in.

Afterwards, I encouraged the families to speak out and share their experiences as a group. For the last two weeks, Usha and I had spoken to each child individually, which could take up to five solid hours a day. Today, we sadly didn’t have the time. And this was one of our biggest turnouts! Amazingly, the mothers began to speak. While they spoke the children played with colorful balloons I had brought.

They had questions: will there be a cure? How can I get factor? My son needs surgery… some simply said thank you for thinking of them and for giving them support. Their thanks were heartfelt. Usha was especially engaging during this time: she has a natural rapport with families that no one can compete with. She also understands the Indian medical system, each different state, and indeed each chapter as she has had so much experience with Hemophilia Federation (India). And she has compassion galore. Above all, Usha and I were assured today, as in every city we visited, that Save One Life is a) working well, 2) much needed, 3) changing lives for the better.

After the family rap session, lunch was served for the families. We noted that quite a few families came from far away. This has been a constant theme in India: impoverished families will travel up to 12 hours to come to an HTC, all the while trying to manage a child with a painful bleed, and no access to medicine. Usha offered them reimbursement for their travel, including some rupees for their food. Our hearts break when we hear tales like this, but this is exactly the daily living challenge that Save One Life is meant to address.

While they ate, Dr. Ghosh, newly elected president of HFI, and Dr. Devlia Sahu, hematologists at the hospital, joined us, and then gave us a tour of the medical ward. It was filled—and almost all with inhibitor patients. What was going on? There were two, sometimes three patients in each bed, which are only an old metal frame and a thin plastic mattress. No TVs, no games, no room, just endless days of waiting and treatment, and pain. If only you, the reader, could experience this and see this! You would never take anything for granted in your life again. How little these patients, even this hospital, have!

One boy has a CNS bleed, factor IX (very hard to get in India); another two boys whose grandmother kept saying the only words in English she knows, “Three… three..” Three family members who need help. She thrust their x-rays at me, pleading for help. Another man, who looked okay, till he lifted his shirt. His swollen and distended abdomen was loaded with blood, rock hard, which had become tumors, and spread so much they cracked his pelvis. The lovely man, in pain, gave me a Namaste and smiled, and allowed me to take his photo. A little boy with a urinary problem lay naked on a bed, rigged up to cryo. He smiled at me and let me hold his hand. Another with a fracture, another with a head bleed… on and on… it was quite shocking and the needs are great in just this one ward alone.

One case really caught our eye: Suraj, a 16-year-old who came from 12 hours away. I have never seen anyone with hemophilia in all the 24 countries I visited, with such bad joint problems. We took a video of him walking, and he was in obvious deep pain. No crutches, no wheelchairs… they just all endure it like soldiers.

This had been such a joyful and simultaneously sobering visit. But the overall theme was gratitude. They are so grateful to their American sponsors, and we were so grateful to the Mumbai Chapter for providing such a meaningful visit in such a short time. Only 24 hours in Mumbai and I feel like my soul has been branded forever with their pain and perseverance. As always, “The poor have much to teach us.” Indeed, even though I am now home, hemophilia patients from India keep invading my dreams.

Before we returned to the hotel to pack up, we visited the Mumbai Chapter’s office. It was a short walk from the hospital, and was clean, spacious, filled with materials. We had some of that great Indian tea (I will miss this a lot!), despite the heat of the day. Indira and her team showed us their spreadsheets and how meticulously they maintain Save One Life records. Usha and I were so impressed. We could see that this is how the program is meant to run, and yet, just last year, Mumbai was not running the program as well as we had hoped. Patients didn’t know the money came from US sponsors; things were not being communicated. Now, Mumbai emerges as one of our best program partners.

As we joked, Balshiram pointed out the security camera in the corner, a very rare luxury, to monitor the factor supplies. I joked that I thought this was their security camera, and I pointed to the wall photo of Ashok Verma, founder of HFI, who passed away in 2004. We all laughed, and felt that Ashok would be proud of us all today, to implement a program that directly and immediately touches the lives of the poorest with hemophilia in India, a program that saves lives.
(Photos: Mumbai Chapter team members; scenes near KEM Hospital; the swastika in this form is an ancient Hindu symbol)

Usha and I had a bittersweet good bye at the airport: it may not be easy to spend two and a half weeks with another person, almost 24 hours a day, but we not only did it but enjoyed it. I hope it’s the first of many such trips. Usha wisely noted: when the compassion is there, dedication and a common mission, there is no room for differences, quarrels, disparity or problems. We are forward looking always, to help these children have opportunities to not only live but to thrive.

We have children from India in need of your help now. Would you like to sponsor a child? Please visit www.saveonelife.net to learn more. Only 66 cents a day can truly change the life of a child with hemophilia in India—I have seen this with my own eyes this time.

India Day 15: The “Jhopadpattis” of Bombay

Laurie Kelley October 8, 2010

Today was one of those days when you are so bone tired you think you cannot go on or bear any more. After all, we have been through ten cities in two weeks now, with little sleep, thousands of miles covered, trips on planes, trains and autos, through slums and countryside, but more importantly, listening for hours and hours to the needs and sufferings of those with hemophilia in poverty. After our visit tonight, Usha sat in the hotel room and cried. It was overpowering.

We left Pune (in Western India) this morning after a productive two-day visit. I’ll have to write about that Sunday, and our trip to Chennai. This tour of India is so rich in experiences, that I haven’t had the time to record everything. But let me tell you about tonight.

We drove by hired car for about three hours northwest to Mumbai, formerly known as Bombay, or “Good Bay” in Portuguese, so I’ve been told. Mumbai is one of the world’s mega-cities, with an estimated population of 14 million. You can easily be stunned just by the visual sensations: the city is absolutely pulsating with activity. Street vendors, pedestrians, auto rickshaws, taxis, trucks, motorbikes, bicycles, and cows. All a noisy, polluted, colorful metropolis.

After we gratefully settled into the Courtyard Marriott, we had a quick lunch and set to work, catching up on emails and such. At four o’clock we met in the lobby with Indira Nair, president of the Mumbai Chapter of HFI, who has a son with hemophilia, and Balshiram Gadhave, board member, who also has hemophilia. We set out in a taxi to visit two families.

The streets are choked with traffic and vehicles, and you take your life into your own hands when you choose to cross a street. And I am forever looking the wrong way, as they drive British here, on sides opposite to those in the US. We did cross the street, and stepped into another world, the jhopadpatti.

Jhopadpatti can be used to describe a group of one or two room housing units, laid out in a corridor, or simply to describe the slum. I’ve been to many a slum, but this one was sensory overload. In a distinctly Muslim section, it was crawling with children and street vendors, and everywhere you looked there was something to see: people hurrying by, skinned animals strung up for sale, windows with strips of candy or snacks fluttering in them for sale, women in black burkas, children running loose in packs, a cat munching on something dead, bullocks tied together in a massive herd in a shed, and noise—children yelling, motorbikes beeping… it all hit us like one massive assault on our senses.

Javeed, the boy we came to visit, led us to his humble home: a small, one room cinderblock dwelling, after a ten minute walk down the narrowest of alleys. When I snapped photos of the local boys, who mugged for me, he said in English, “Come. Dangerous here.”

In his home, there was barely enough room to stretch out my arms. Yet he and his younger brother with hemophilia, his mother and sister all live here. They even had just adopted (nothing formal) an infant whose mother died in childbirth and whose father abandoned the family. Think of this next time you feel bad for yourself: hemophilia, limited or no access to treatment, no privacy, no bathroom, no shower, no possessions. Yet Javeed goes to college and will eventually start a life better than this one. One day.

Around the corner we met Yatish, another young man who is actually getting his master’s degree! Intelligent, hard working, he told me he would one day leave the slum and take his mother with him and buy a home. He’s studying business, and I have no doubt he will reach his goals. Yatish’s home likewise is small, probably the size of a walk in closet, but his mother keep it immaculate. Still, as we spoke, I looked at the one bed, the size of a cot, and wondered who slept where? They pay for purified water to be pumped to the home, pennies a day. They pay $1.50 for monthly rent.

For both boys, their fortitude and determination are remarkable. Their ability to survive is admirable. Both are Save One Life boys, and we are so proud of them!

Walking out, I garnered stares from everyone, and the local children all followed me and begged for a photo, which I gladly took. Beautiful children, trapped in a slum, knowing nothing of green fields, sparkling rivers or polished homes. Yet they survive, and in the case of Javeed and Yatish, even thrive.

The slum seemed to spit us out onto the main street, where you truly have to monitor every second and every vehicle to avoid being struck. Dusk was falling, and a group of teens marched by pounding drums and carrying a gilded statue of the goddess Lakshmi, as this weekend is a holiday. All around India exploded in sound, color, noise, happiness and eternal sorrow. We grabbed an auto rickshaw—like riding in a golf cart— and quickly covered our mouths with our scarves, as the streets were filled with cars. The rickshaw is open, and we are level with exhaust pipes. I felt like I was being asphyxiated. If you’ve ever rode “Mr. Toad’s Wild Ride” in Disney World, you will know what the ride home was like.

While the Marriott was a welcomed refuge against the world outside, the world of the jhopadpatti would not leave our heads. For residents and those who visit, there seems no escape. Tomorrow I meet with 22 Save One Life beneficiaries, and then with greatly mixed feelings, leave for Boston.

I’ll write again on Sunday, to finish off my India journals, and tell you about the families we met in Chennai (east coast, last Monday) and Pune (west coast, yesterday).

India Day 10: The Phenomenal Hemophilia Work of Durgapur

I am in Pune right now, in Western India, very close to Bombay (Mumbai as it is now called), but let me back track again to describe my visit to the wonderful city of Durgapur.

On Sunday Usha and I had our driver take us for a three-hour ride from Calcutta on a well-constructed highway to the city of Durgapur. “Durga” is the Hindu goddess of power and wealth. This was a special visit for me, because I had befriended a board member, Subhajit Banerjee, years ago and had promised him on day I would visit his center.

Indeed, many years ago I ran a program that gave aid to hemophilia programs in developing countries, and gave the Durgapur chapter its first international grant of $5,000. They were so appreciative and invited me to come. I traveled to India in 2001 and then in 2005, but had no time to see Durgapur. For this trip, I told Usha that Durgapur was at the top of my list and if I saw no other city, I must get there. Today was the day!

I fell in love with Durgapur the minute we arrived. A big steel city, it nonetheless has a charm about it. It is colorful and easy to drive around. The city was getting ready for puja, a religious festival that honors the goddess, so her images are everywhere! You could feel the excitement.

I could also feel the heat. It was at least 95 degrees. As soon as we arrived we tossed our luggage into the hotel rooms, patted some water on us to cool down and went straight to the Hemophilic Society- Durgapur Chapter, and what a welcome!

Subhajit, President Mr.D.D.Sen and their team had assembled many of the parents and children, and they welcomed us with flowers first, then several children rubbed kum kum and tamaris on our foreheads, a traditional greeting to show respect for visitors. We all put our hands together in the traditional greeting and said “Namaste” enthusiastically. Like a dream come true for me!

We then sat in a well-decorated room, with ceiling fans droning overhead to cool us. So much time and thought was put into our greeting. All the children and patients came forward to bring us roses. Subajit read what I think was the nicest testimony to our work that I have ever heard. Indeed, he reminded me of things I had almost forgotten! We had ties that went back years with this chapter. Subhajit pointed out that almost all the physiotherapy equipment in the room was purchased with our grant. About 20 children were enrolled in Save One Life (and I know personally almost all the sponsors!). He said that the program helped them understand their patients better by requiring them to make home visits: indeed, on one such trip, during a six hour ride, the car got stuck and they had to push it our of the mud. Then, the committee members were chased by wild elephants! It made them realize how hard it is for patients to come to the center for treatment. And yes, this is exactly what Save One Life is all about—seeing the world from the eyes of the poorest patients, to know their needs in order to meet their needs.

After the lovely welcoming ceremony, I was ushered into a small, clean and air conditioned room. There, I began to meet the patients, one by one. In speaking with them, I began to learn of common threads in the fabric of their poverty. For example, the chapter team told me that the public education is so poor, deliberately poor, that students often hire private tutors, usually the same public school teachers! The teachers supplement their meager income this way, and the students get one-to-one teaching at home, a blessing for a child who suffers from hemophilia. All the student needs to do then is take the exams and pass. But this costs money. And this is where Save One Life is really helpful.

Other stories emerged, each one compelling: sometimes heartbreaking and sometimes cause for rejoicing. For example, Paru, who is sponsored by Ed Wilson of Pennsylvania, bought a fridge with money from Save One Life to help store ice. But he also needed to take out a loan of $80 to pay for it. Imagine, a loan for $80! This shows the very low level of living.

Asish is age 5 and factor IX deficient; factor IX is very hard to come by. The father is poor, a “casual” laborer, meaning his work is seasonal. He uses the donated money for his son’s education. When Asish said innocently, like any child, that he would like a bicycle someday, we alternately gasped and then laughed. Someday.

And Biswajit, sponsored by Diane and Kyle, is age 17. He is so painfully thin, and shuffles and speaks in a dreamlike way, that I guessed correctly he is severely malnourished. He was getting his funds for the first time, and he was so very grateful.

But the highlight of the day was a home visit in the late afternoon to Abishek. He is a handsome young man with severe hemophilia A who lives “close by” the clinic. In reality, it was a 40-minute ride down roads filled with auto rickshaws, trucks and motorbikes. He watched the red sun set while a grim, grimy soot filled the air. Durgapur is Steel Town, India and the steel mills belch out smoke round the clock. We eventually navigated down twisting, narrow alleys, so small that we had to back up again and again, and wiggle the van through them. When we could go no further, we then had to walk, attracting quite a crowd behind us, as I am sure it has been a long time, if ever, someone like me had visited. As we discussed Abishek’s case, I deftly dodged fresh cow dung, to put it politely, which was smeared on the crumbling walkway. I felt like I was doing some exotic dance moves in the near dark.

We reached Abishek’s home and ducked inside to escape the crowd of curious boys following us. Abishek is a young man, sponsored by none other than Patrick Schmidt, president of FFF Enterprises. Patrick would be proud to see his sponsored child: Abishek is attending college and intends to be a physician. He will do it, too. He has excellent grades, is well cared for by his hemophilia society, which gets factor whenever possible. And even using such small amounts of factor—he probably gets no more than 5,000 IUs a year—Abishek is in good shape because he uses ice, rests and compresses the bleed. He tried to never miss school. His family is completely dedicated to helping him, and despite living in such poverty, their small one room home was neat and clean. His mother offered us tea, the model of Indian hospitality, which I almost always find in the homes of the poor. We stayed for a while, and then got ready to leave.

As we walked down the concrete path to the street, about 100 or more faces greeted us: all the villagers had turned out to see us in sheer curiosity. Because I am American, white, a female… all the boys wanted to touch my hands, and I tried to shake as many as possible, feeling like a politician. I even videotaped them and they let out a cheer. Usha urged me to hurry into the car as this could turn into a friendly riot, so we jumped in.

The last stop of the day was the home of Subhajit Banerjee, board member of the Durgapur chapter, and a long time colleague. We had a delightful visit, meeting his elderly father and mother, and his children. With us was Ajoy Roy, another board member. Subhajit has hemophilia, and we’ve known each other a long time. Also Ujjwal Roy, former regional director for HFI and a long-time colleague. We had tea, many laughs, and took photos. Their children presented Usha and I with lovely hand made gifts, and I promised to come back and visit their school as a guest.

Durgapur is a model chapter, a true success story where patients come first. Subhajit and Ajoy, along with their team, demonstrate orderliness, discipline, documentation, while also providing solutions to the patients, and knowing every patient personally. I was beyond impressed with how they run their chapter. And it shows in the physical appearance of the patients, who look good. Still, there are deep needs to be met. Poverty in this part of the state is rampant, and families live far away. We’ll continue to support them through Save One Life, which has become a lifeline to many.

INDIA Day 11 Taking a Train Back in Time

Laurie Kelley October 6, 2010

The days in India are flying by in a whirlwind of planes, trains and autos. Usha and I left Durgapur Tuesday afternoon (Day 11) first by car, for a three hour ride back to Calcutta, then by train headed for Bhubaneswar. The Calcutta rail station is immense, a real icon to the British colonial era. Wouldn’t you know, the sky opened up and a monsoon of rain poured down. Everything turned into slushy brown mud. We maneuvered saris, salwar kameezes and four big bags of luggage (with the help of porters!) in the downpour. It was a chaotic scene with thousands of Indians all running about to get tickets and trains, everyone soaked. We couldn’t help but laugh! Little children kept staring at me (big ones too) as I was the lone Westerner among the crowd. Finally we boarded, said good-bye to our dear friend Ujjal Roy, who accompanied us, and then settled in. The train is small, not very clean, and crowded. Our luggage sat in the aisle and I squeezed in the seat with my other luggage, and Usha, for seven hours. At least inside was air-conditioned. Outside was scorching. When we used the restroom, the water from the spigot was scalding! I use the term restroom loosely for it’s anything but restful to use. Often no soap, no paper, and sometimes no toilet! Try that while balancing purse, sari, scarf and yourself as the train lurches.

With every stop, people came and went, and often beggars would board momentarily, looking for money. These are people with no arms, deformed arms, or just children. One beautiful six-year-old boarded and began wiping the filthy floor with his own shirt, pitifully looking up at passengers with palm out, trying to get some money. Sadly, these kids are part of the mafia, which extorts money from them and gets them hooked on drugs to control them.

The train took us through so many rural villages. The scenery leaving Calcutta was one of terrible charcoal-grey slums alongside the tracks, but eventually gave birth to lush rice paddies, palms, red dirt roads, where water buffalo graze and villagers in colorful saris walk with umbrellas to protect from the sun. The sun set on the beautiful India countryside.

We arrived in Bhubaneswar, the City of Temples, around 9 pm, and were warmly greeted by Mr. Chandan, the secretary of the hemophilia chapter here. The mothers had also come, bearing beautiful flowers. We jaunted off to the Crown hotel, an oasis for us after such long and difficult trips. And they have Wi-Fi! (Photo: Usha and I at the Crown. Even at age 57, Usha is stunningly beautiful and no one wears a sari like her!)

On Tuesday we had two family visits: one fairly poor, and the other doing quite well.Deepak is a 17-year-old, who just started being sponsored through Save One Life. I was excited to meet Deepak to introduce him via video to his sponsor. Deepak is a college student, studying liberal arts, and who eventually wants to be an engineer. He lives in a concrete home with several rooms. The number of rooms, and availability of electricity and plumbing often judge wealth. Deepak bikes to work, despite having severe hemarthrosis in his knees. He is a slightly built young man, soft spoken. Mr. Chandan came with us, as did the president of the society, Dr. G. P. Chootray, a pathologist.

I believe what Mother Theresa once said: “The poor have much to teach us.” I find more civility and hospitality in the homes of the poor than I do in the homes of the wealthy. I have been in the homes of many a millionaire and even more, the homes in slums. It’s in the humblest of homes that they welcome you with open arms, even when I have nothing to bring, offer fresh drinks, in this case a coconut with the top lopped off and a straw inserted. They sit patiently, give you the best seat (often the edge of the sole, flat bed), and put the focus on the guest. I always come away feeling bonded to them. Despite the rain, mud, heat, flies, and usual lack of hygiene, the families we visit are personally clean, carefully dressed, and always an example of civility.

Deepak is doing fairly well but we worry about his weak muscular system; his muscles are quite atrophied and he is painfully thin. We recommend strongly physical therapy to boost the muscles, which will protect his joints, and then keep him in school. Later that evening we would give the society the gift of 30,000 IUs of factor—as much as they were able to purchase from Hemophilia Federation (India) this entire year!

(Photo: Ganesha, the elephant-headed god, is a fixture in many cars) As we drove around Bhubaneswar, I noticed how underdeveloped it is compared to the other major cities. This city is the capital of the state of Orissa, which holds 35 million people. You never, ever get over the sheer number of people you see in India. Swarms, hordes, oceans, wave after wave. And the languages? Over 70 distinct and different languages, and over 1000 dialects! This country is nothing short of a miracle of cooperation and efficiency.

As I was in the City of Temples, I had to visit the oldest temple, the Lingaraj Temple, built more than 1000 years ago for Lord Shiva. Stunning in appearance. All about and inside the temple were pilgrims, come to pray. And all about were cows! You may know that cows are sacred in India, and in this city especially, one cannot look anywhere without seeing a random cow or bullock. Like the temples, they are part of an exotic and inspiring backdrop of this fascinating country.

Our day ended with a very simple and intimate meeting with the local families. They are respectful, and deeply grateful. I presented a gift of 30,000 IU of factor, as much as they have had all year. Imagine, 30,000 IU to be divided among 200! How do you do it? As we chatted with the families, we saw swollen knees and contracted elbows. This chapter, though in existence for 18 years, is a throwback in time. It lags far behind other chapters we have seen, and it shows in the faces and joints of the patients. We are dedicated to empower the patients and to raise this chapter to a higher level, and to inspire more patient leadership. I think the families are ready for this. Usha gave an inspiring speech to the families to get involved, and she has the authority to speak this way as she is former vice president of chapter development for Hemophilia Federation (India) and has a son with hemophilia. She’s a powerful speaker, and quite motivating.

We were touched to receive lovely gifts of hand-embroidered cloths, very typical handiworks of this state. As we drove away in the dark, we felt the families were also in darkness about the possibilities with hemophilia. Save One Life will work to enroll more children, and to help these families have a better future.

(If you would like to sponsor a needy child from Bhubaneswar, please contact us at contact@saveonelife.net today! They truly need your help. Only 66 cents a day can change their lives!)

India Day 9: Hyderabad to Calcutta

Laurie Kelley October 3, 2010

Usha and I flew in last night to Calcutta, the “City of Joy,” location of the famous Patrick Swayze movie by the same name, and of course, Mother Theresa’s mission. We arrived quite late at night after a short flight from Hyderabad. Let me backtrack and finish up with Hyderabad. Camp was on Wednesday, and on Thursday, we awoke at 4: 30 am–Usha, Dr. Prasad and I drove to Hyderabad, a 5 hour ride.

We stopped around 9 at a restaurant and had some breakfast: eggs and toast for me, and delicious Indian tea, which while not spicy has some sort of zing to it. Really delicious and milky. Then back in the car, which was a luxurious ride, as the car seems to be new and is covered with terrycloth towels. We passed long stretches of fields, and many villages, all seemingly the same. Buffalo pounded the shoulders, and various roadside shops zipped past.

Entering Hyderabad, it got busier and busier, and then crowded. There are hundreds and thousands of motorbikes. The streets were pulsating with them. Huge buildings, large billboards: Hyderabad is one happening place. We drove to the Nazim’s Institute of Medical Services, where the local chapter heads and doctors awaited us outside. Inside, patients were waiting for Usha and me in the hallway, some eager, some confused. There was quite a bit of nervous energy: while I was speaking to one set of parents, someone would interrupt, start a new conversation, introduce me to someone else… quite confusing! Everyone seemed angling and positioning for attention. And why not? Everyone needs financial assistance and factor, and those we can provide.

All of these patients were really lovely to interview. When I met an obviously Muslim family, I said “Assalam a laikum,” and their eyes lit up in surprise. Just a smile and “Namaste” was enough to get everyone connected. The team served that lovely Indian tea; the only thing is, the dainty Indians serve it in a thimble size cup, while we Americans, especially this American, love to swig it down by the 12 ounces Dunkin’ Donuts size! Appreciating the cultural differences, they served me two cups.

Meeting them one by one, I was able to get the baby smiling, the little boys to relax, and the teens to loosen up. Most families earn about $25 a week, nothing. They really need help. All they want is a chance, a shot at life: the opportunity to go to college, be educated and get a job. The families all want and need help; the appeal in their eyes was plain. Who can help them? Who cares about impoverished patients with hemophilia? If we in the developed countries have no pity in our hearts, and turn away from them, who will help them? I always think, what if that were my precious baby with hemophilia? I would pray day and night for someone to help. I wanted to touch those boys’ souls, change their lives… come back again soon. Who are they? What do they feel? What can we do for them?

Back at the house, we sat outside on the veranda before dinner in the dusk, to relax. We heard the mosque call to prayers. I thought, here we are Christian and Hindu with the Muslim prayer calling out over the city… beautiful… like kindred spirits united against the common enemy of poverty.

On Friday morning, we had a rare day off. We decided to tour the city. We drove to the old section, to a busy bazaar, and I loved it! I hopped out of our car, dodged the speeding cars and motorbikes and snapped some photos. Usha and I checked out a temple of the goddess of wealth, Lakshmi. We visited a dress shop and I had fun selecting a few Indian salwar kameezes—less than $15 an outfit. I was feeling out of place with my Western clothes. We stopped for lunch at a nice restaurant, where I had dhosa and coconut: delicious! Back to the house, pack and we were ready for our flight to Calcutta, which is where I am now.

Upon arrival at 10:30 pm last night, we were greeted our colleagues, Mr. Oja and Sudip Chatterlee, members of the executive board of the Calcutta Chapter. The relatively cool 76 degrees last night belied a brutally hot day today.

I haven’t ever seen much of Calcutta though it was my second visit. I visited in 2005 on another whirlwind visit of India, and only stayed 24 hours. I longed to see more of it, as I only know one part of it and probably not representative. I awoke this morning, opened my hotel window and was greeted by a big green, polluted pond, where workers were, at 7 am, already vigorously beating sheets and towels against rocks; I wondered if my sheets would end up there today?

Calcutta is huge and grimy, and even the paved streets seemed to perpetually throw up a cloud of dirt. Yet I see a lot of progress in the five years since I was last here.

The Calcutta Chapter was only a stone’s throw away, and we zipped off there to met with patients this morning. We interviewed 10 patients in five hours, and I must say, I saw some really great things, and some heartbreaking things.

First the great things: Calcutta was one of our first cities to enroll in Save One Life, and now I can see the payoff. The boys we enrolled eight years ago are now finished with college and getting jobs. They are paying for their factor. Some are even thinking of going back to school for further degrees! Many of them are quite handsome and came to the center to see me, well dressed. For example, Nazbul is now a tailor, even though he is only 18. With the Save One Life money from sponsor Eric Hill, president of BioRx, he bought two electric sewing machines, and earns $30 a week, which is way above what most of our beneficiaries are earning. Previously, he considered himself very poor, but now he is sustaining himself and even buys factor.

But we also met little Mokhesh, age 14 but so slim and tiny. He had chest pains, and he writhed in pain a lot during the interview. He and his father had traveled 5 and a half hours to come here.
We gladly paid for their transportation, and concerned, we arranged for him to have an infusion, as I brought with me donated factor. Without this donation, though, he would have to wait for hours to get the cryo or plasma into him. We had a long talk with the chapter about why they don’t get any donated factor. All over India chapters are finagling to get donations: why not Calcutta? The team didn’t seem to know where to turn to for donations (despite that I run Project SHARE and it’s right on the internet). I think after this visit, we will have them more aware of how to get factor. We also saw a huge need for physical therapy. The boys all have contractures and very weakened musculoskeletal systems. Usha began thinking of ways in which to get programs started.

Above all, I saw connection and compassion. Tanuka, the administrator of Save One Life for the chapter, was our kind of gal—she knew every single patient by name, and all their relevant information. No one else there had the connection to patients like her. With this detail, she could ask better questions of them, and could determine their needs best. When one young man, 29, said he sat around watching TV all day, she said pretty much that’s it—no school, no work, no Save One Life funds. He was given a deadline by which to get his life going again, despite his obvious poverty and disabilities.

One boy who made a strong impression on us was Toten, 21, who lives three hours away. He was very quiet during the interview, until the end. Then he shared with us his dream: He’s attending electrical engineering school, and once he is successful, he wants to help others, to give back. That’s one of the first times I had heard any of our beneficiaries say that, and it pleased us. We feel that with our blessings, we can give back. Poverty becomes less a socioeconomic level, and instead becomes an attitude. If Toten, who earns about $1 a day can give back someday, then we all can.

Next stop Durgapur, a four hour drive!