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

Gap? Try Chasm

When you prepare to hop on or jump off the “tube” in London, the underground train’s speaker system says in a very sexy voice (aren’t all British accents so), “Mind the gap.” The gap is that space in-between the platform and the train, so yes, you’d better mind the gap or else. Stuck in there and you could lose your leg or life.

Closing the gap was the theme of this year’s World Hemophilia Day, celebrated April 17 all over the world. Mostly it’s a way to unify our diverse and dispersed community, and also to raise public awareness. My favorite activity this day to date was last year, when Romanians turned the major fountain in Bucharest red with food dye, representing blood. And all over the world you see posters of kids with swollen joints, and things like that.

Here’s my poster representing the gap: real life Kirby, age 10, from the Philippines. This poor child languished in a hospital bed in a far off province, with gangrene in his leg just two years ago. Doctors didn’t even know he had hemophilia. Only when he was accidentally discovered by Andrea, one of our colleagues there, did anyone suspect he had hemophilia. Project SHARE sent factor VIII and he had his leg amputated. And that’s the good news.

He looked healthier post-op, and he survived. He was enrolled in the hemophilia society. But yesterday I received an urgent request from his doctor: Kirby’s leg is infected again. Send more product, 100,000 IU so we can amputate. Again.

Kirby, or rather his leg, is stuck in the gap. No products available in the Philippines. Hard to imagine: we had a military base there. People speak English there. The Philippines has been our ally for decades, a springboard that buffered us from military threats from the east. But they have never qualified for our medical care.

And the Philippine hemophilia communities are not yet lobbying their government for their right to get factor. What will it take? Boys with hemophilia are dying every month in the Philippines. How many boys must die before they realize they’ve got a huge problem and are willing to do something consistently about it?

And we don’t have 100,000 IU. Where are we going to get 100,000 IU from?

The gap at this point looks like a chasm. Kirby could very well die without the factor to amputate again. Andrea wrote to me tonight in fact, and told me about an upcoming meeting this month that will put the issue on the table. Enough is enough: you can only close the gap when patients come together, decide they have a right to factor, and then present this to the government, and keep on pressing it.

Russia did it. Brazil did it. India did it. Even little (and poor) Honduras did it. The Philippines can do it too, if they want to.

But it may not be in time for Kirby. When I think of Kirby’s case, I don’t think of closing the gap, it’s more like Touching the Void, a chasm cut into a mountain that divides the haves from the have-nots. And even if we donate all 100,000 IU by some miracle, there are more Kirby’s. There are only three ways to close the gap: lobby, lobby, and lobby.

(Anyone with any factor VIII that is unwanted or unused for medical reasons, please ship to us ASAP)

Great Book I Just Read

The Time Machine by H.G. Wells (Kindle)
This science fiction classic is timeless, no pun intended, and available for free on Kindle. Wells indeed is the father of Science Fiction, and created the genre with this, his first novel. A Victorian man, only referred to as the Time Traveler, invites his scientific and literary colleagues to dinner at his home, but arrives himself late and disheveled. He shares his bizarre and fabulous story: he has built a machine that allows time travel. He went into the future, the year 802701, to what he first thinks is Utopia–no one worries, no one works, everything is shared, people seem at peace. But not so: mankind, rather than reaping all the benefits of accumulated scientific knowledge, has become two races, the Eloi, gentle, child-like simpletons that have no culture, reading or seeming purpose, and the Morlocks, hairy, snarling, subterranean ape-like creatures that actually work machinery and harvest and cannibalize the Eloi. Wells, through carefully crafted and beautifully scripted prose, weaves an amazing story about mankind’s future, and the perils of advanced civilizations and communism. Wells’ sci-fi is a vehicle for his critique on social systems. A fantastic book by a literary genius. Five/five stars.

World Hemophilia Day


Today is the birth day of Frank Schnabel, a California businessman who over 60 years ago founded the World Federation of Hemophilia. All across the globe today, the hemophilia community celebrates unity, that we are one family united by a protein deficiency that causes prolonged bleeding and suffering.

We are divided only in access to treatment. Up to 75% of the hemophilia global community has no access to factor. We are trying to close the “gap,” as the WFH puts it, by donating factor medicine to those in need.

Help continue to unite the world hemophilia community. Donate unused or unwanted factor to Project SHARE, or sponsor a child with hemophilia in poverty through Save One Life. Give back to those in need, and to honor those who have gone before us.

www.saveonelife.net
www.kelleycom.com/projectshare/index.html

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.

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