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Staying in Touch With Insurance Reform

Laurie Kelley November 22, 2010

When I was 18 and became eligible to vote, I began reading weekly news magazines to try to stay abreast of world and national events. Tonight I skimmed through Time magazine and tried to get a better understanding of health care insurance.

I know it’s hard to get started learning a new subject when you’ve never tracked any national world news–I mean, who’s the new Speaker of the House? What might change the course of politics in Zimbabwe suddenly, and what is China’s environmental status? I found the news magazine The Week, which gives brief but insightful synopses of the week’s editorials on events, in a debate pro-con format, which allows us to make our own mind’s up about what we are reading.

HFA’s Friday Update is an email newsletter that gives you excellent summaries of insurance news that has to do with bleeding disorders. All you have to do is subscribe at www.hemophiliafed.org, and an email will arrive every Friday in your Inbox, with a summary like this below, with live links to complete articles. I can think of no better way to watchdog what is happening–something we all need to do! And you may have heard that HFA president (and friend) Paul Brayshaw, and a photo op recently with President Obama, in Paul’s backyard! So… start reading this coming week, and learn!

Sample for this week….

Senate Votes to Postpone Doctors’ Medicare Cut

The Senate voted late Thursday to postpone a massive cut in Medicare pay for doctors, agreeing to pay doctors at current levels through Dec. 31. Senate leaders also promised to work toward a 12-month postponement before the end of this year. Doctors were threatening to stop taking new Medicare patients if the cut went through. The measure now goes to the House, which has adjourned for the week. House Majority Leader Steny H. Hoyer, (D-MD), announced Thursday evening that the chamber would take up the measure Nov. 29. Read More

Department of Health and Human Services Amends “Grandfathered” Regulation

As of November 15th, employers will now be able to change insurance companies and keep their “grandfathered” status as long as the change does not result in a significant increase in cost or a significant decrease in benefits as laid out in the health care reform law. One of the concerns that prompted the change was that the original rule may have given an unfair advantage to insurance companies when negotiating pricing and benefits with employers because of the employer’s fear of losing “grandfathered” status. Learn More

Republican Senators file brief in favor of court challenge to Health Care Reform

The Senators filed a 16-page brief in the federal case based in Florida arguing that a key part of the new healthcare law (the requirement that all individuals have health insurance) is unconstitutional. Learn More

Department of Health and Human Services Provides Guidance on “Exchanges”

The document is the first in a series that the Department of Health and Human Services (HHS) will publish over the next three years to provide information to states and the territories seeking to establish a Health Insurance Exchange under the Affordable Care Act. Regulations for public comment will be issued in 2011. This guidance is intended assist states and territories with their overall planning, including legislative plans for 2011. Learn More

Bipartisan Bill Would Allow State Waivers From Health Law Provisions

Sen. Ron Wyden, (D-OR) and Sen. Scott P. Brown, (R-MA) collaborated on a bill (Empowering States to Innovate Act), that proposes to move up the date when states would be allowed to opt out of certain obligations in the health care overhaul law — including the controversial requirement that all people purchase health insurance. The bill is the first time a Democrat has teamed up with a Republican to try to modify the health care law. It is also the first time a Republican has offered legislation to ease a requirement in the law rather than repeal it. The Department of Health and Human Services would have to confirm that the state provides coverage at least as affordable and as effective as what the law requires. In addition, the state alternative would have to insure a comparable number of residents and not increase the federal deficit.

Senate Finance Committee Holds Hearing on Health Care Reform Law

During the hearing on Wednesday, the Committee heard from Administrator Donald M. Berwick. Berwick testified that his goals include: better coordination of care through systems such as Accountable Care Organizations, improved care for chronically ill patients and prevention. He also stated “his job is to make Medicaid stronger and more viable, and he realizes states are facing tremendous budget pressures in the economic downturn.” Republicans used the hearing as an opportunity to voice their concerns regarding the new health care reform law and their intentions to closely monitor Mr. Berwick’s actions at CMS, while Democrats used their time to show support for the new law and for Mr. Berwick. To download Donald Berwick’s testimony and the statements from the Senate Finance Committee visit the Committee’s website.

CMS Introduces New Center for Medicare and Medicaid Innovation

Created by the Affordable Care Act, the Innovation Center will examine new ways of delivering health care and paying health care providers. CMS also announced the launch of new demonstration projects that will support efforts to better coordinate care and improve health outcomes for patients. For more information on CMMI visit their website.

The New York Times Reports on “Health Rule Waivers”

Administration officials are issuing more waivers to try to prevent some insurers and employers from dropping coverage. Read More

State Update

State Medicaid Directors Move Toward Formal Affiliation with the National Governors Association Read More

NHF’s 62nd: Carnival, Concern, Unity

Laurie Kelley November 15, 2010

The theme of the 62nd Annual Meeting of NHF was “Marching Forward,” appropriate for a place like New Orleans, where you can expect a high school marching band to turn the corner of your street at any time. Situated at the Marriott on Canal Street, just a carnival bead’s throw from the Mississippi River, the event hosted about 3,000 community members, including physicians, nurses, social workers, nonprofit staff, NHF reps, pharmaceutical and homecare reps and of course, consumers!

My week started with a five-hour workshop on Novo Nordisk’s new HERO program, the largest psychosocial research project in hemophilia history. We gathered a select group of HTC and consumer representatives to discuss ideas to bring the results of HERO to the US, to share with our community: what can we learn from the results and what to do with the results? It was a lively and challenging task, but with a great group that meshed well, it was also fun!

Opening night was heralded with a marching band and carnival characters on enormous stilts, handing out strings of beads to all. NHF Chair Stephen Bender and father of a daughter with hemophilia gave a moving opening speech recalling his daughter’s birth, and how he became an advocate for better health care as a result of their harrowing experience. Executive director Val Bias gave a motivating speech about unity in the bleeding disorders community. He also unveiled a new campaign for women with bleeding disorders, called “Victory for Women.” This will replace Project Red Flag.

Later we walked through the exhibit hall, which contains booths by all the vendors who serve our community, and all had a Mardi Gras theme. There was face painting, games and great food.

There were many sessions on a variety of topics related to bleeding disorders. Women with bleeding disorders figured prominently as a topic. I also attended a very interesting town meeting by the Committee of Ten Thousand—COTT. COTT is often referred to as our third national organization. We have NHF, HFA and COTT. This certainly doesn’t refer to third place. Each of our national organizations has a vital role to play.

This two hour meeting had two topics: blood safety, prompted by the new movie Bad Blood; and privacy issues for patients. The first topic was kicked off by Corey Dubin, a person with hemophilia and an icon in our community. Next to him was Nathan, representing the Gay Men Health Crisis organization. This year 18 senators sought to repeal the FDA ban on blood donations from gay men in light of all the safety procedures and testing performed in the US. The ban has been in place for 17 years, started during the HIV contamination of the 1980s.

A lively discussion took place but what was unique and wonderful was the mutual admiration and respect of COTT and GMHC. Each respected each other’s view about blood safety and the right to donate blood, and whether that even was a right.

The second topic unleashed a firestorm of concern: patient privacy rights. Are patients being adequately informed of how their data is being used? One patient, a well known advocate, stated that patient data is gold. People in our industry make money off of patient data, good money. How is this safeguarded? Patients are signed up for clinical studies—are they well informed? With health care reform, and anticipated countermoves by the insurance industry, patient data is needed and desired to justify decisions to restrict access to care, access to products or to protect clinical treatments. Data is everything. But do patients know who has their data?

With representatives of several different and independent organizations and patient groups—and industry—in the audience, it became clear that each group had similar questions about ethics, funding, transparency, and patient protection of any organization collecting patient data. I explained how LA Kelley Communications collects patient data through our mailing list, and how fiercely we protect it.

For other groups, it’s not as clear what the data is to be used for ultimately. Will it be sold? There’s a market for it. A big discussion ensued about bringing various groups to the table to discuss privacy and to get some questions answered. COTT has acted as a watchdog for blood safety, and now may act as a watchdog for patient privacy— a topic more vital than ever in this era of health care reform. Patient Data equals power, power to discriminate, make policy, earn money, effect government policy… the possibilities are many. This data is our data—our child’s data, our carrier daughter’s data—and we need to protect it by knowing who has it and what they plan to do with it.

After the town meeting, some people went to social events. We had a special guest—Usha Parthasarathy from India, with whom I had just finished a 16-day tour of India. She was able to promote our Save One Life program to many people, and secured more sponsorships for the 300 children who are waiting for sponsors.

On Saturday morning I facilitated a symposium hosted and funded by Baxter Healthcare, titled “Paving Your Way, Protecting Your Future.” Guest speakers included Don Molter, social worker and career counselor at the Indiana Hemophilia and Thrombosis Center, and Dr. Art Wood, vice president of Patient Services Inc. Don stressed the importance of taking the SATs or ACT, applying for scholarships and to be open to education even later in life—especially in this economy, when many people need to rethink their career choices. He introduced the Baxter Education Advantage Scholarship, which helps people with funding for college and also vocational training. This is open to anyone, not just those on Baxter’s products.

Art’s presentation included salient highlights of the ACA, the new health reform act, and how this may impact families with bleeding disorders, and how patients can take action now to get informed and learn more. It will be absolutely vital for everyone to read their insurance policy and to read updates regarding the ACA and how it impacts individual policies.

We also had two community speakers: David shared a very touching story of having hemophilia, HIV, hepatitis, losing his thumb in an accident… and losing his wife of 24 years when the marriage was overwhelmed. With a deepening of his faith and assistance from his HTC, he successfully returned to work and now is remarried. Dwight and Kathleen are parents of eight children, four with hemophilia, and shared their trials in trying to stay insured. With the help of PSI, they were able to make it. Their handsome son Patrick was in the audience, admiring his parents.

The three day event closed with a final event, also sponsored by Baxter, at a warehouse where we walked by enormous plaster of Paris statues of King Kong, Pokemon, King Neptune, the Cowardly Lion and Yoda—all Mardi Gras characters. Also we saw floats being prepared for the next Mardi Gras. It was really amazing! At the end of the walk was a large indoor room to house about 2,000 people who feasted on New Orleans cuisine, dance to an excellent band, and have their fortunes read by Tarot card readers. I caught up with my friends from California—Laurel McDonnell, Paul and Linda Clement—and enjoyed the company of our very special community.
Please visit these websites to learn more:
www.cott1.org
www.uneedpsi.org
www.thereforyou.com
www.saveonelife.net

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.