Project SHARE

Advocacy in Action: India

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

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

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

Uniting Globally

Untreated bleed, Dominican Republic

I attended the annual National Hemophilia Foundation meeting from November 7-11,
as I have done since 1992 faithfully. As usual it was filled with interesting
sessions on treatment of hemophilia, attractive displays of company booths and
wonderful reunions with many friends and colleagues. But something new: in his
opening speech, NHF CEO Val Bias, a man with hemophilia and one of the foremost
advocates in helping to get the Ricky Ray Law passed, spoke about uniting our
communities globally. This is the first time I believe that NHF has shown a
targeted interest in helping the world’s 75% with hemophilia who have little or
no access to care.

Laurie with Nancy S., who has a child with VWD

This was exciting to me as I have been working to help the underprivileged with hemophilia since 1996. First with a leadership training program called
L.I.G.H.T., then a factor donation program called Project SHARE, still ongoing,
and my nonprofit Save One Life, which sponsors children overseas. I was
thrilled that NHF would bring its resources and brainpower to help those in
need.

Why not before now? Timing, focus. We have been through many phases: the contamination of the blood supply and subsequent infection of thousands occupied our time and focus for years. Then came product shortages. The inhibitors. Even NHF had its own problems internally and struggled to assess leadership (CEOs came and went) and structure. That seems behind us now. And with Val’s leadership and vision, NHF turned its powerful eye overseas, especially to Africa.
Val Bias and Neil Frick visited Nigeria in September, marking the first time that someone from NHF has been to Africa! I’ve been traveling there since 1999, when I first visited Zimbabwe and Kenya, and am returning on November 30. Finally, finally America is showing its leadership and true giving nature in joining the international community and participating in partnerships that will help
hemophilia nonprofits and its members in developing countries.

Meeting FB friends: With Liz Purvis and Tater!

Val has bigger plans: the 2016 NHF meeting will be held in Miami, and Miami was
also selected for the 2016 World Federation of Hemophilia biennial meeting.
This means that attendees to either meeting can also extend their visit and
join the other meeting. WFH gets about 4,000 visitors and NHF gets about 2,500.
This would potentially be the biggest meeting on hemophilia in history, and on
American soil.

I really applaud NHF becoming involved globally. The world needs it and it’s good
for us. I’ve always felt that we have more than enough to share, if we can just
find ways to do it. With NHF’s power, hemophilia care globally can progress at
a faster pace to reach more in need, an estimated 300,000 who suffer from this thoroughly
treatable disorder.

With Gary Cross (L) and Dana Kuhn, of PSI

And looking at all the photos from NHF here, I realize that almost evey person pictured either sponsors a child with hemophilia or VWD in a developing country through Save One Life or has contributed in some way to Save One Life or Project SHARE. From summiting Kilimanjaro to raise funds, to making handicrafts that support a child, to sponsoring one directly, Americans have already been uniting globally—and now can take pride that their national organization will as well.With Reid Coleman of NC

Biru’s Journey


I just came home from the cinema, where I watched The Way Back, a film by Peter Weir, my favorite director. It’s based on the true story, documented in the book The Long Walk by Slawomir Rawicz, which I’ve read, of a young Polish man who is sent to Siberia during World War II, and endures incredible suffering. Just the train ride alone to Siberia was miserable, even for the guards. Eventually he breaks out of the camp, and walks from Siberia all the way to India. Through Mongolia, China, Tibet, over the Himalayas and finally to India, burying his fellow camp-breakers along the way. What never waivered was the young man’s humanity, his forgiveness, his hope.

You don’t need such dramatic storytelling to see such heroes. They exist right in our community. One is Biru. Now, we help scores of people with factor, and sometimes we don’t recall every person’s name. But there are some you don’t forget. This is what I read in India’s annual report:

“Posing for a photograph is one thing that Biru likes. He has lived with hemophilia for over 30 years, fulfilling his role of being the elder son in a family that has a poor, jobless father; a bed-ridden, diabetic mother; a sister in school, and another hemophilic brother.

“Life, however, takes its turns. And more often than not, they are sharp. This picture taken on July 20, 2010 is perhaps one of the last few pictures that Biru posed for.

“Today he is preparing for a big compromise, which would mean that if he has to survive, he has to pose without a leg throughout the new life this would get him!


“It is our choices, far more than our abilities, that show what we truly are!


“For Biru too, there are choices: One, he can die of hemophilia, or two, he can sacrifice one of his legs, and live like that forever. He has chosen to live because of a simple reason: ‘If I die, there would be no one to feed my family. I have to live, even if my leg goes away. Once I’m healthy, I may not move around, but I will fly high with my determination and hard work, and take good care of my family!’


“Some five years ago, a hematoma developed in Biru’s leg. Recently, when this brilliant Tinsukia boy secured the first position in Master of Science, the hematoma burst, leaving him completely bed-ridden in a painful condition. The severity is such that he cannot move, or even speak. Given this condition, the coaching classes he used to run are also closed down. Doctors have advised him a transfusion of at least 3 units of blood every day. This is to prepare him for the amputation of his leg, which, should be done as soon as possible so that further pain and suffering can be lessened.


“The operation will require at least 100,000 IU of factor, in addition to hospital costs. Biru is moving to Mumbai soon to part ways with one of his legs that helped him go wherever he wanted to. Sure, this will be a loss, and cause him great pain. However, his hopes are still alive. He is composed and determined as his eyes are fastened to the skies. ‘This is happening,’ Biru says, “because I’ve made the right choice in life!'”

What a beautiful attitude! Project SHARE will be helping with the factor to make this operation happen. Our colleagues in India are fundraising so he can pay for the operation. And just a few weeks ago, his mother died. But Biru’s spirit is strong. It has to be, to endure the mountains he must climb.

Superheroes Unite!



I just spent an exciting two days in Phoenix, Arizona at the National Organization Camping Conference for Hemophilia Organizations, more “tastefully” known as NACCHO. Now in its 10th year, this was nonetheless the first time I’ve been free to attend as a speaker. It’s a great program that teaches best practices and principles of camping for kids with hemophilia, generates a tremendous amount of motivation and allows attendees to interact and learn from one another. (Photo: Cindy Komar, and board planners)

I arrived late due to yet another snowstorm in New England, and it was clear the attendees already were bonded and excited. Led by “Big Dog” Pat Torrey, the theme of the entire meeting seemed to be “Superheroes.” Using this metaphor, camp directors were encouraged to think like a superhero: what skills did they have? How would they help and serve others? Big Dog found creative ways to keep bringing each session to a close around this theme. He encouraged people to get into their role by dressing as superheroes! This led to some hilarious improvising, as most attendees used whatever materials they could find at the event or at the hotel.

I was impressed to see camp representatives from Mexico, the Netherlands, the Czech Republic, Romania, England and India! NACCHO invites professional camping organizations to come in and share ideas and techniques applied to camps nationwide, and then find ways to make them applicable to a camp for children with bleeding disorders.

I was invited to speak about Project SHARE (our factor donation program) and Save One Life (our child sponsorship program). How does this relate to camping? Some developing countries have camps—indeed, I help to found a camp in the Dominican Republic, and have helped with camps in Romania. I also helped fund and run a camp in Zimbabwe, sadly their first and so far last one. Often things discussed at NACCHO are not applicable to camps in developing countries. When one speaker insisted that parents demand clean facilities, and showed a photo of a run-down lavatory, I thought, “That looks pretty good to me!” while the audience winced. When safety rates high here, overseas it’s simply a focus on factor being available. Different standards based on different realities.

The things that are the same? All kids want to meet other kids with hemophilia. All kids want to have fun. They need medical staff nearby in case of emergencies. All kids love to pretend, and the idea of a superhero is universal, whether it is a Marvel comics guy in a red suit, or a Norse god.

Most important: you cannot have a camp without factor, and most developing counties have no factor. Camp becomes a way to attract attention for factor donations and funding; it’s also a great concrete way for a nascent hemophilia organization, struggling to find a way, to provide a program and learn how to organize, delegate, and fund raise. Save One Life also dovetails with this program, as many of the kids who come to camp can be interviewed in depth, and can apply for financial aid through Save One Life. Through Save One Life, we’ve been able to have more children attend camps, or vice versa, join our program. Either way, they benefit immensely!

I’m afraid some of my searing images poked a hole in the bubble of elation surrounding the conference, but this is reality for thousands of children. We sometimes forget how lucky we are in America. People were touched more than shocked: following the presentation we raised enough money to sponsor two children! NACCHO planners decided one from India and one from Romania, and hopefully, this would be a perpetual gift that will come from each future NACCHO conference.

The conference celebrated Saturday night at an indoor racetrack where the attendees got to act like kids! Most went in “drag,” in their superhero costumes and there were prizes for best costume, as well as best camping ideas. I dressed as a cowgirl, and as I hung out with Usha, Save One Life’s program liaison from India, I told everyone that I was the cowboy and she the Indian.

If your chapter has a camp and you think you’d like to expand on your activities, programs and vision, NACCHO is the place to come.

Thanks to Bob Graham for the invitation to NACCHO, and to Cindy Komar, executive director of the Hemophilia Association, Arizona, and to Pfizer for providing all the funding for this great event!

Book I Just Read
Kissing Kilimanjaro by Daniel Dorr
This easy-to-read book details Dorr’s personal attempt to summit Kilimanjaro. It’s a nice read, done in one evening, as nothing is too technical or even historical. It’s interesting to see Tanzania through Dorr’s eyes, as he is a naïve newcomer: new to Africa and poverty. His girlfriend comes with him on his adventure. Failing the first attempt, he is haunted by his own inability to conquer altitude sickness despite being in good shape, and sets out to try once more. A good book to read for mountaineers or wannabes. Dorr is not a great writer; the text is like reading someone’s blog, casual with easy words and short sentences, but likeable. For those planning to attempt Kilimanjaro—like ME—it’s a good resource. Two stars.

The Season for SHAREing

Thanksgiving is celebrated on Thursday across the United States but there are thankful people everywhere this week. One of them is Jagat Man from Nepal. Even though we helped him have a leg amputation, he’s grateful to be alive. He has hemophilia with an inhibitor and the bleeding and subsequent tumor in his leg may have killed him.

We have dozens of stories about those we have helped in impoverished countries, and we are pleased to start sharing them with you on a regular basis on Facebook. Project SHARE (Supplying Hemophilia Aid and RElief) now has its own page, and we welcome you to visit, leave a comment, and enjoy learning about your brothers with hemophilia in faraway places, where factor is usually not available.

Visit us at: http://www.facebook.com/pages/Project-SHARE/149435267732?ref=mf

You will even be able to converse with our friends around the world.

In America this week, we can be thankful for our medical care, and above all, the factor concentrate that keeps our loved ones alive. We at LA Kelley Communications are grateful for the resources to be able to send factor around the world, to those in great need and in pain. Thanks to our sponsors, and also to those of you who have sent factor. Happy Thanksgiving!

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