WFH

The Time Has Come: Help Developing Countries Now

Laurie Kelley July 9, 2012
Laurie Kelley with Dr. Tatiana from Russia

I’m in a soggy Paris (not complaining though!), attending the wonderful 50th anniversary of the World Federation of Hemophilia, taking place during its biannual Congress. The WFH, founded by American Frank Schnabel, is the premiere hemophilia nonprofit in the world, dedicated to improving the lives of those with hemophilia around the world, uniting those with hemophilia globally, and advancing access to care in developing countries. Today was the opening day, and a staggering, record-breaking 5,300 are in attendance from 130 countries! It’s a great opportunity for me to meet with our many country partners, who work with us to get factor to patients in developing countries.

I’ve been attending WFH meetings since 1996, and attend every two years. It’s a great chance to learn more about WFH efforts, to meet up with those we serve, and to make new acquaintances. Right away I bumped into Dr. Tatiana Andreeva, a pediatric hematologist from St. Petersburg whom I’ve known since 1998. She even visited my home once!

The incomparable Jill Smith, RN from Australia—who traveled with me once to Zimbabwe for a week to do an assessment of hemophilia care there (and shared a tent with me on safari!)—and incredible Anne Gillham, RN from South Africa, who has been a vital source of training and support for so many countries in Africa besides her own.

(L to R)  Jill Smith, RN (Australia), Anne Gillham, RN
(South Africa), Laurie Kelley

The opening ceremony was excellent. Mark Skinner, past president of NHF and who has been president of WFH for 8 years now, gave an insightful talk about the accomplishments of WFH in helping advance care. But never have I seen the WFH so intensely focused on developing countries. This made my heart sing, for it’s been my mission and desire since 1996, that we do not forget those at the bottom of the wait list, the ones whose government does not provide funding for treatment. A very touching and powerful movie was shown about how WFH has worked in Senegal to improve care, and I was pleasantly surprised to see that producer Marilyn Ness had created it! It was beautiful, so well done. I’ve been to Africa many times and have traveled those same dusty roads, been in the same hospitals with paint-peeled iron beds, no AC, suffering patients. Marilyn captured the feel of hemophilia care in Africa well.

The WFH is now making a serious push to “Close the Gap” with a new campaign, designed to raise $5 million to help create programs to reach the impoverished countries where care is lacking. We still have four more days of the Congress, and already the tone has been set: we must act now to help save the lives of those without treatment. It’s what we’ve been focusing on at Save One life, my nonprofit, and I applaud WFH for putting the spotlight on developing countries as it moves forward, and asking everyone to join in.

After the ceremony, we all moved into the exhibit area and visited the various booths by the pharmaceutical companies. There we met even more colleagues and friends. I was thrilled to meet up with my friends from Africa, especially Megan Adediran, president of the Nigerian Haemophilia Foundation, who just published a new book about her experiences with hemophilia, called A Light at the End of the Tunnel.

More to come!

Laurie Kelley With Simba (Zimbabwe) and Megan (Nigeria)
 

Gap? Try Chasm

Laurie Kelley May 7, 2012
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

Laurie Kelley April 18, 2011


Today is World Hemophilia Day, celebrated all over the world where there are established hemophilia organizations. There will be some excellent photos and public awareness campaigns, which will hopefully help these organizations get recognized from their governments.

It’s also a time for companies to make grants of money and factor as gestures of solidarity, which is great for established organizations.

There are an estimated 400,000 with hemophilia in the world. Up to 75% of them have little or no treatment. Many of them are even in countries where there are hemophilia organizations. But here is an interesting thing: If we could observe the earth from a far, and light up the countries where there are no hemophilia organizations, you’d be amazed to see that most of them are in sub-Sahara Africa and the Caribbean. This means no patient registry, no education and no factor.

It will be a glorious World Hemophilia Day some day in the future when we are able to bring so many other countries into our global community and share our success, our resources and our compassion with them. For now, we can be glad for those we have helped and who are celebrating.

To learn more, visit www.wfh.org and www.saveonelife.net.


Great Book I Just Read
The Screwtape Letters by C.S. Lewis

I thought to reread this 1942 book from high school days today on Palm Sunday. What a joy! This small book is packed with thought-provoking commentary on religion, good and evil, Christianity, and being a human, amusingly packaged as a series of letters from a senior devil to his disciple. Lewis was one of the foremost authors on Christianity of his day, and is widely known for the Chronicles of Narnia series. But this book is truly one of his masterpieces. Easily read in a few hours, it will haunt you for years. Screwtape writes to his nephew, “dear” Wormwood, guiding him as the minion attempts to seduce a human to the dark side and away from Christianity. It is at once deep, amusing, satirical, insightful and embarrassing—you may see yourself at times in the hapless and struggling human. Far from the silly horror-movie antics Hollywood uses to portray devils, Lewis skillfully points out that devils can merely distract us from “the Enemy” God to win humans over to their side. There are many excellent thoughts and phrases, worth debating and pondering. What would Lewis write today with all our texting, computers, Netflix and video games? Four stars.

World News!

Laurie Kelley July 19, 2010


The World Federation of Hemophilia Congress was a wonderful time, and very informative. Representatives from all over the world came to Buenos Aires, Argentina, all last week, to share news, present studies and network.

One of the most talked about subjects was not gene therapy, but longer acting factor. As we mentioned in the February issue of PEN (https://www.kelleycom.com/newsletter.html) it looks like extended half-life factor will be next on the horizon for new products. Of all the companies presenting, Biogen Idec perhaps stole the show. The company reported positive results from a Phase I/IIa safety and pharmacokinetic study of its recombinant factor IX protein, called “rFIXFc,” in hemophilia B patients. The primary objective of the study was to assess safety, and the product was well tolerated (albeit in a single-dose) with no signs of inhibitor development or antibodies.

Chief medical officer of hemophilia products at Biogen Idec, is none other than Glenn Pierce, twice president of the National Hemophilia Foundation. As president of NHF a long time ago, Glenn pushed hard for gene therapy and was hopeful that it would be found in ten years, and then dampened that hope to in our lifetime. For now, it seems we may have found the next best thing: long acting factor.

The Congress gave me a chance to meet with a variety of colleagues from around the world, including those from Pakistan, Honduras, Tanzania, Ghana, India, Belize and New Zealand, just to name a few! Nice break for me: instead of traveling to meet them all in their countries over several years, I was able to meet with them all in one week!

Great Book I Just Read
The Man Who Tried to Save the World by Scott Anderson

This book gets better each time I read it. The enthralling story of larger-than-life Texan Fred Cuny, the “Master of Disaster,” who disappeared in Chechnya in 1995. Anderson actually travels there during wartime (dubbed one of the scariest places on earth) to learn what happened to Cuny. Cuny was a visionary, who turned the international disaster relief world on its head with his revolutionary–and effective–ways of approaching disaster relief. Largely self-taught, his compassion, passion and “bedrock practicality” led him to devise better and cheaper ways to save lives–not always a welcome thing to the comfy and bloated big international nonprofits. He was drawn to danger and this book reads like a spy thriller and a fascinating biography of a fascinating American. He is a true American hero. Harrison Ford bought the rights to the movie in 2002: come on Ford, where is the movie? Three stars.

Hola from Buenos Aires

Laurie Kelley July 12, 2010

I’m in Argentina all week at the World Federation of Hemophilia Congress, where an estimated 4,200 people have congregated to share information about hemophilia and to network. It’s been great to meet old friends (some going back 20 years now!) and to meet new friends. It’s actually mind-boggling how many people are here, all concerned about hemophilia from all corners of the earth.

Two of the first people I bumped into were Lynley and Richard Scott from New Zealand. I feel like I know them well as–you will see soon–they have contributed many stories of son Andrew for my new inhibitor book. We chatted today for about 5 straight hours as we hung out (while the rest of the convention seemed glued to the big screens to watch the World Cup), and then went out to dinner together. Argentina is beef capital of the world and has some of the best beef–but I don’t eat red meat! Well, their flan is great too!
‘

It was a great pleasure to see one young leader, Masood, from Pakistan, who has truly blossomed to a national position. I met him last in 2007 in Lahore, Pakistan. He has hemophilia, and excellent skills that should help his country move forward in care.

The topics for presentations range from the practical–how to help children cope, physiotherapy and health care delivery–to the possible, including many discussions on longer acting factor and new products.

One thing I learned that has really made me happy: Ghana and Tanzania should be inducted as members of the World Federation of Hemophilia. These are two countries I have been advising for the past 5 years each to help them establish hemophilia societies. At long last, their hard work will be paid off by becoming members. Being an official member means that they will be eligible for many more resources from the community, such as training, factor donations and potentially twinning.

I still have a few more days to go and hope to learn lots more to share. ¡Hasta luego!

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