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)
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.
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!
The World Federation Congress in Istanbul has been both spectacular and exhausting! With over 4,200 in attendance from over 100 countries, delegates represent developed and developing countries, different ethnicities, races and religions, and are patients, patient groups, doctors, treatment centers, researchers, pharmaceutical manufacturers and distributors.
Each day opens with a plenary session, and then there are lectures and presentations on either a medical/scientific track, or a multidisciplinary track. The multidisciplinary track includes psychosocial, patient organization or individual perspectives. I’ve a great interest in inhibitors now, as I am writing a book on them, but was unable to get to the inhibitor presentations. (I’ll be attending the Inhibitor Summit in Denver in July and will report from there) I find myself most interested in the patient organization challenges and the presentations representing a patient perspective, as this is where a lot of my work is focused. For example, my friend and colleague, Maria Andrea Belen, a mother from Argentina and also the Cordoba Chapter president, gave a wonderful presentation on the perspective of siblings (I am going to print it in an upcoming issue of PEN). I recall when I first met M. Andrea in 2000, at the WFH meeting in Montreal. She had come on her own, was a bit overwhelmed, but wanted to do something for the families in her corner of Argentina, which she felt was neglected. And now, look at her: eight years later she is reputed to have the strongest chapter in Argentina and is presenting papers at the WFH! This is empowerment in action; leadership manifested.
The theme of this Congress is “Treatment for All.” This is a good vision, but we are a far cry from that. I met individually with representatives from Pakistan, Nepal, India, Sri Lanka, the Dominican Republic, Romania, Ethiopia, and Zimbabwe. Challenges with access to factor continue, ranging from countries like India, which can mobilize financing to pay for some imported factor, to countries like Ethiopia, which has nothing. And Zimbabwe? If you’ve read my blog, then you know what it is like there. In Romania, the government has shown great progress and is buying more factor, but it still needs to be better distributed to the areas beyond the major cities. And Pakistan has made tremendous progress but educating patients remains a high priority.
You can see the huge disparity in priorities by reading what was printed in Hemophilia Daily, the Congress daily publication. From a representative from Ecuador: “Poverty. There are big differences from country to country, but in the end it boils down to money. Even if you convince your government that hemophilia is important and they need to provide supplies for patients, it still might not be possible.” Then from Germany: “At least in Europe, the main obstacle is still the availability of prophylaxis for everyone.”
Still, in all the many years I’ve been attending these Congresses, I have to say that I see overall improvement. These Congresses at once make you wince at the millions of pharmaceutical dollars spent on travel, entertainment and marketing props that will only be useful for a few days, and yet you have to balance this with knowing that people are networking, brainstorming, strategizing. I witnessed wonderful connections being made that might never have taken place, with promises to help those in need. Now often when we return home, life resumes and the goodwill starts to fade fast as we get distracted with our daily lives, but there are a select few who will continue to follow through on promises.
One such miracle took place on the last day. I had just wrapped up a meeting with Tendayi Mamvura of Zimbabwe, mother of two boys with hemophilia and volunteer with the Zimbabwe Haemophilia Association. I had just seen her in December, of course, and have known her for years. I’ve been trying for a long time to get the international hemophilia community to do something to aid Zimbabwe, which basically receives help only from our company. And I think I’ve been the only person from the hemophilia community to visit the country since 2000! As we finished up our meeting, Jan Bult, president of the Plasma Protein Therapeutics Association, a nonprofit based in Washington DC, introduced himself to me. We had been hoping to meet at the Congress. When I introduced Tendayi to him, as she was getting ready to leave, he struck up a quick conversation with her, and, taken with what we told him about the utter lack of care and hematologists in Zimbabwe, suddenly invited her to the June 17th meeting–where she will be able to address 300 people working in this international community. She looked stunned and accepted; I couldn’t have been happier. At long last, perhaps now maybe we can get real aid and resources to long-suffering Zimbabwe! (Where aid agencies are now being targeted as acting illegally against President Mugabe)
I regret I didn’t get to see Kiss Lazlo, the Romanian father who biked for two weeks to attend the Congress from Romania, and to raise awareness of hemophilia by interviewing with media along the way. He made it, sore but happy, but with the huge crowd it was easy to miss certain people.
With so many people in attendance it was lively and crowded, exciting and draining. The pharmaceutical companies have their massive booths with plenty of educational material. The WFH had a splendid resource center where we could walk in a retrieve dozens of educational booklets on a variety of relevant topics. There seemed to be fewer patient organizations with booths, although I met the lovely guys from the Irish Haemophilia Society and strolled by the Algerian, New Zealand and Iranian Hemophilia Society booths.
And there are social events: industry has their own exclusive, invitation-only events, but there are also general events such as the cultural event Tuesday night at the Topkapi Palace, and the final night event at the Hilton. I had a ticket to it and never have missed one, but a bad headache laid me low, and I missed out on it last night.
Today was the general assembly, in which the national member organizations elect new leadership. Mark Skinner, former NHF president, person with hemophilia and current president of the WFH is up for re-election. I’ll post the results as soon as I hear. Good luck, Mark!
Thanks to the WFH for a remarkable Congress, really one of the best ever. The amount of coordination that must go into one of these events is almost incomprehensible, but the WFH staff and event planners make it look routine. Thanks also to industry for sponsoring travel for so many, and for providing food and drink and entertainment. And thanks to the Turkish Hemophilia Society for hosting this amazing event. We will all continue to work harder than ever to make treatment for all.
I am here till Monday, and will post a few photos of my tour. I haven’t seen anything of Istanbul till today. A city of 15 million, it is the only city on earth that straddles two continents!
(Photos from top: With Dmitry Chistyakov, president of the St. Petersburg Hemophilia Society (Russia); With Dr. Uri Martinowiz, chief hematologist of Israel; With Daniel from Romania)
I am in historic and amazing Istanbul, Turkey, site of the capital of the once Byzantine Empire and this week site of World Federation of Hemophilia Congress, which brings together people involved with hemophilia from all over the word. It is the largest hemophilia gathering, with over 4,000 in attendance! Mark Skinner, person with hemophilia and former US NHF president, is the WFH president.
Mark gave a wonderful talk tonight at the opening reception, followed by a Turkish symphony, with exotic and rich music, and traditional dancers. Afterward, all 4,000 attended the exhibition hall, where the manufacturers and also the hemophilia national organizations from many countries had booths. This is an all week long event, which gives attendees the chance to hear what other countries are doing in terms of hemophilia treatment, research and best practices. It also is a great chance to network. For me, in the international community for 12 years, it is like a family reunion. Already I have met with representatives from the Dominican Republic, where we just held camp, Pakistan, Russia and India.
Visit the WFH website at www.wfh.org to learn more about their efforts to help educate, organize and bring treatment to people with hemophilia worldwide.
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