John Schmitke: When a Role Model Meets His Role Models

Note from Laurie: I’m sharing this wonderful first-person report from a young man who attended the WFH Congress in Melbourne in May. A refreshing look at a hemophilia congress from a different point of view.

My name is John Schmitke and this is my story. I’m
currently the Vice President and Chairman of the Youth Committee at the
Canadian Hemophilia Society, Manitoba Chapter. As a young man living with hemophilia, I recently participated in a program which gave me the opportunity
to be the Hemophilia Champion. The project allowed me to raise awareness about
the disease in Canada by taking part in media interviews on World Hemophilia
Day and promoting an inspirational video that focused on my life and
highlighted how I overcame my adversity. 
 

One of the most exciting parts of the program was that I was
to represent Canada at the World Hemophilia Congress in Melbourne, Australia.
The World Hemophilia Congress is an event that allows people affected by
hemophilia to come together to discuss the disorder and treatment options. I
was extremely excited to be visiting Australia!
Once I arrived in Melbourne, I touched base with my friend Justin
who is also the co-chairmen of the National Youth Committee.  He was already at the conference center
and had managed to find an organized youth event. 
One of the things that I was
looking forward to the most on my way to this conference was that I would be
meeting people from around the world that had the same but also different challenges
that I have had.  Health care in
Canada is among the top tier system in the world, which means that there is a
lot to be learned from my peers in the tiers below the one that I have been
privy to.
When people meet me they would never think that I have a
disorder of any kind, never mind one that typically manifests in physical
symptoms.  This is not the case for
everyone here. 
This fact would become more apparent as the week progressed.  I should say that I have always tried
to be acutely aware of what hemophilia is like for the majority of people
suffering from it, but that awareness is much different when those people
surround you.
At this youth event there were people with arms that could
not straighten, knee replacements, in wheel chairs, suffering from inhibitors
that prevent medication from being effective, and just living with daily
reminders of what it is we have. 
I don’t want to focus solely on the trials that this
disorder can place on people. 
There were others like me, people that have been lucky in their
lives.  People that had no outward
symptoms of having a bleeding disorder. 
I use the word luck, because luck it would seem in a big part of
it.  The other part is we have
become very good at managing our bleeding disorders.  Either consciously, or in some cases instinctively, finding
a way to minimize the effects by staying ahead of them.

Adam, Andrew, and Chris had the
greatest influence on me leaving this Conference.
Andrew has an inhibitor. 
He also struggles with target joints. 
As a result he has had a complete knee replacement and had both of his
ankles fused.  He is only in his
twenties.  He has the same
type of hemophilia as I do and has had a completely and much more difficult set of challenges than I.  Andrew went through a lot of his life accepting his
limitations, but at some point he stopped accepting things for what they were
and decided to make them what he wanted. 
He lost a lot of weight, began fitness training, and lived his life the
way he wanted to live it.  If you
were to ask Andrew he wouldn’t say it was an easy accomplishment, but he would
say it was one worth all the effort several times over.
Chris is currently in better shape than
I am, which is something that I have never seen in someone who has a severe
bleeding disorder.  I know that
sounds conceited, but this level of physical ability is not something that is
seen in people with severe hemophilia. 
I was surprised, and I admire Chris for what he had achieved, knowing
the dedication that it took to achieve it. Let’s just say that I was used to
being in the lead in the gym, period. 
I have never had the experience of having a hemophiliac come near my
physical ability, never mind surpass it. 
The experience was both humbling and immensely satisfying.
Adam also left a lasting impression on me.  He’s
a young man who relies on a wheelchair  because he’s paralyzed
from the waist down.  This is a
result of a bleed near his spine shortly after he was born that was caused by an
epidural.  He doesn’t want
sympathy; no one with a mental fortitude as strong as his does.  He as accomplished as anyone that I
would meet, so he doesn’t need sympathy either.  It is people that are this remarkable that inspire, though.  They are the true role
models among us.  To go through
life with a severe bleeding disorder as well as being unable to walk, but
accomplishing as much or more than most people with neither of these challenges
shows that with effort and the willingness to adapt, these things are no
handicap.
The people representing the 120 countries
attending this conference have knowledge to be gained.  There are all kinds of sessions on
treatment methods, medications, complications, challenges.  But it’s witnessing the culmination of
life experience within the attendees that make up the “patient population” that
you gain the most.
If I can accomplish one thing in my involvement with my
local, national, and global chapters, it would be to share that knowledge with
the effect of changing lives for the better.
I went to Melbourne because some people see me as someone
that has experience worth sharing. 
While I believe this, it is the experience of others that drives me to
continue living in an exemplary way.
Thank you to everyone that provides me with these types of
opportunities.  Most importantly,
thank you to the people that make these opportunities worth experiencing.

Eyes Wide Open: The Boy from Burma

I was in Australia May 8-15, attending the World Federation of Hemophilia Congress. I had the pleasure of meeting a young man named Aung, from the Asian country Myanmar, formerly known as Burma. Aung had written to me months ago requesting sponsorship to the event, plane tickets that cost about $2,000. I am asked frequently for assistance and need to bank my money on people and programs I think will give a return–not to me personally, but to the cause of hemophilia. Myanmar is not a member organization of the WFH and therefore not eligible for funding to the Congresses. Kind of a Catch 22–the countries that need to be there can’t be there unless they have a hemophilia organization. These countries can’t get help forming a society, because they don’t have a society! 
But one of my specialties is trying to get organizations formed in countries where none exist in the hopes that one day they will be accredited by WFH. It’s a great partnership which sometimes works! In this case, something about Aung struck me. A young man in a rather isolated country, who hasn’t walked in 7 years, in a wheelchair, willing to for the first time fly to another country, all for hemophilia and his people. That’s courage. He impressed me so much we helped fund him; please read his thoughtful and beautiful essay below and prepare to be impressed. And to realize how lucky we are in developed countries. We live in two worlds—the haves and have-nots, and the have-nots are only asking for the know-how to learn to stand on their own—literally and figuratively.



At the Yangon airport

My mother’s worries perhaps foresaw
the difficulties ahead. It’s not an easy task for me to deal with the airline
staff who told I am not allowed to travel on the flight because I have no
companion to look after me – because I am disabled. However I had a hard time
with my anger management in my teenage years especially on discriminations
against haemophilia and disability, I showed great demeanor in engaging the
conversation with the staff of the airline. They finally said they would make a
call the captain if he allowed me to be on the plane. It was a huge
disappointment I have ever had on the last minutes before the flight on the
airport. But this time I managed as my best to stay cool and wait for the
response, which was positive.

Meeting with Fred and Maria for the first time
Just as I have come out of the
airport main building, I found Fred Wensing and his wife, Maria. It’d be funny to say
but I had never seen his photo before and had no idea how to find him. Luckily,
he found me instead. The wheelchair at least made it easy for him to spot me in
the crowd.  
Aung with Fred Wensing of Australia

He and his wife took me to the
hotel where I was staying during the Congress days. This is my first trip
outside of my country and I have to say everything I perceived in Melbourne is
total opposite of what my country has in a positive way. There’s no
disabled-friendly sidewalk in Yangon, let alone the other parts of the country.
There’s proper treatment for people with haemophilia except blood products
which, according to my experience of catching malaria, are really risky. The
main difference between Australia and Myanmar is economic conditions, no doubt.
But the attitudes of the people here, especially the attitudes on the
disability are what I would call really civilized. Whenever I go in Melbourne,
I was never welcomed by the quizzical look saying “Why this guy in
wheelchair is here?”  Attitudes
are not about material power or economic prosperity of a country. It’s about
education and nature, I believe. Even if so, there will be a lot of decades
before I will be seen as a person, not as a person in wheelchair.

First Day at the Congress
The exciting Congress days were
ahead. I was not able to sleep until 3 am on my first day of staying at
Travelodge. My head was flooded by the seemingly unstoppable thoughts of what I
would do and who I would meet in the Congress. It was 1:30 pm when I woke up. I
ran, of course in the motorized wheelchair, to a food shop nearby and had my
brunch. The shop sold Indian food and I found for the first time that Myanmar
is a cousin of India when it comes to cooking dishes. Their curries greeted my
taste buds as old buddies do to each other.
It was the first day of the
Congress and I planned to go to the Congress only for the opening ceremony. Fred
appeared at the lobby at 5 pm. With Aboriginal music and dance, the Congress
was wonderful. I met some people who have haemophilia including an elderly
person, who has pseudo tumor from haemophilia, a teenager, whose legs becomes
paralyzed after being injected painkillers through his spine, a severe
haemophilac from Tasamania who has inhibitors and joints with bleeds. I met
with some other people but the image of these three people left on my mind.
Back in my country, I always had this feeling of being alone before. I found no
one who is put into wheelchair by haemophilia and related causes.

Second Day at the Congress
Second day was probably the biggest
day of my life and the opening of my adventures. I went to the Congress alone
in the middle of the walking crowd who were going to all the directions. I can
enjoy the view of the Yarra River along the way to Melbourne Convention Center
while enjoying the freedom given by the wheelchair-friendly environment. I went
to the session, Management of Hemophilia with Little or No Factor. I had a conversation
with one of the speakers, Dr. Daniel Hart from the U.K, on my health problems
with blood products. According to him, some form of antibody might have
developed in my body due to the prolonged contact with FFP or cryoprecipitate
whenever I have bleeding. These antibodies make the treatment with blood
products less effective and my immune system is prone to fever and cold when I
have blood products as a result. It makes sense of the problems I am facing
when I inject blood products.
Appointment with a haemophilia specialist
I had an appointment with the
doctor after the session. Although I am seeing haematologists often in my
country, they don’t seem to be able to give me a solution to cure the bleeding
episodes of my knees, which turned me into a wheelchair user when I was 14. My
intention to see the doctor at the treatment room of the Congress is to consult
with him about my knees. The doctor told me it would take approximately $100,000 to have knee replacement operation to be able to walk. It might be a
ray of hope although I do not have any financial strength for such expensive
operation.
The doctor also recommended me to
see a physiotherapist in the treatment room. I have never thought physiotherapy
played a role in giving treatment to people with haemophilia before. The
physiotherapist advised me to have some basic exercises in the water. The very
important thing, she said, is to do the exercise slowly and to the limit
my joints will not bleed. It will be a little bit difficult for me since I have
to practice on my own. But I will have to try some of easy exercise. My muscles
have suffered atrophy over the period of 7 years I haven’t been able to walk. Hopefully,
regular exercise and diet will make the muscles and joints of my legs fit for
some movement.

Wheelchair Talk
I saw the man from Tasmania again
and we headed to a restaurant for our lunch together. He is 33 years now and he
is in wheelchair because of his damaged joints. Inhibitors in his body made it
difficult for him to undergo a joint replacement therapy. On the way to the restaurant
and at the restaurant, we were engaged in the conversation ranging from
relationship and romance to our favorite music. He said he has been going out
with a female friend recently but he doesn’t want it to evolve into a
relationship. “I don’t want her to babysit me, you know.” I could
give him nothing but an emphatic nod. I know what it feels like to be in
wheelchair and to have romance at the same time. Anyone who has been in
wheelchair for seven years will know it too. 
We continued to talk about our lives
and at one point he asked me if my government gives me a disability pension. It
is a new word to me because our country does not have any social welfare
service offering to its citizens. Luckily, I have earned money for my personal
expenses from freelance translation and writing this year. I will have to thank
to my parents for keeping me at the university until I graduated. I departed
him for the next sessions of the Congress after I finished my meal.

I would not forget the moments of struggles with
the manual wheelchair on the way back to the Melbourne Convention Center which
was a couple of blocks away from the bar. I was going back to the Center alone
and the tense feeling is running along my arms while I was pushing the
wheelchair myself. I blamed myself for not noticing the steep ground towards
the Convention Center. On the way up, I felt as if my arms were going to
explode from the cries of muscles. But I felt the need to prove myself that I
am independent and I am capable of going to where I want. Of the things that I
have built, self-respect is a real ingredient of my life. I possibly cannot
survive all the physical pain from haemophilia and the chronic depression
without the sense of self-worth to my own existence and capability shaped by
this existence.
But it was not all my effort that took me to the
destination back. I was stuck at some places along the way and I would not get
back to my destination successfully without the support of the nice people
among the pedestrians.

Experience Sharing
There was one interesting session waiting for me
at the Congress. There were many speakers sharing their experiences such as a
doctor, a community leader and a person with haemophilia under the main topic,
In Our Backyards: Eliminating the Gap in Care Between Developed and Developing
Worlds. As someone who comes from a country with 2 percent of the budget into
healthcare sector, I have concerns for the people with haemophilia in Myanmar.
We have to pay for all the expenses of the treatment and it is extremely
difficult even for the middle-class people like my parents. There will be much
more people in rural area who are not diagnosed with haemophilia and who passed
away because of haemophilia. Personally, I heard the sad stories of the people
with haemophilia who passed away for the inadequate treatment. After I managed
to land the mic calmly in my hands, I raised the question to the speaker on the
difficulty we faced in forming the organization from the start with no data for
haemophilia and related bleeding disorders as well as the hospital with
expensive blood products and no factor products. I caught curious eyes from the
audiences while I was talking about Myanmar on the mic. In the rest of that
day, people came and asked me about the conditions in Myanmar. I cannot bring
better treatment, better living conditions and better lives to the people with
haemophilia in Myanmar myself alone. But I can spread all the information to
the global community and in this way, I might be able to find somebody who is
willing to work together with us to find a solution for approximately thousands
of people with haemophilia in Myanmar.
Learning things with open eyes, Meeting
people with open heart

I love learning, one of the things
that give you a reason to live in the world. The very first word of English I
learned obviously is “Haemophilia”. When I had access to the Internet
four years ago, I typed the same word in Google search box. I still want to
learn more about the bleeding disorder with which I will be living until my
last breath. Some of the sessions of the third day are interesting to me
although I may not be able to apply the knowledge from them to me or to my
friends in Yangon since they target mostly to the people in the developed
world. But I acquired medical knowledge such as what happened when blood is in
joints, and how to manage haemophilia with no factor products. There is hopeful
news such as the half life of the new concentrate products become longer, which
means the treatment will be cheaper with less amount of concentrate used. Maybe
prophylaxis treatment will be available to us in the coming decades.
I had a fantastic meeting with the
board members of the Haemophilia Foundation ACT on the third day of the
Congress. Although we live in different lands and cultures, we share a common
identity – haemophilia. It was never difficult to talk with the people
throughout the Congress. Board members of HFACT are interested in the
conditions of my country and me. I received great advices from them in running
a haemophilia organization. Their organization was formed 30 years ago and they
have been making progress with the care and treatment of haemophilia during
these years. But luckily, as Fred put it, we will not have to wait for 30 years
because science and technology are waiting for us. 
Aung with Laurie Kelley

I had a meeting with the lady from
the US, Laurie Kelley, who sponsored my air tickets.  Project SHARE, organized
by Laurie and her team, has a positive impact on the haemophilia communities in
developing countries. I had talked with her on the possibility of her visit to
Myanmar. She said she might visit Yangon during her trip to South East Asia in
September. I hope to be able to work with Project SHARE and Save One Life
organized by Laurie for the sake of people with haemophilia in Myanmar in the
future.

Aung with Alain Weill, president of WFH

I also had a conversation with the
president of WFH, Alain Weill, at the social event, Taste of Australia. He is a
good listener. He promised me that he would make sure the people in Myanmar can
have the treatment of factor products donated by WFH after the membership
application of Myanmar Haemophilia Patient Association is accepted by WFH. My
country, Myanmar, has been out of the map of the global haemophilia community
until now. I am probably the first person with haemophilia from Myanmar that
has been to a WFH congress. It is very important for all the people with
haemophilia in my country to have a representative in the Congress.

I also found the people from the
neighboring countries of Myanmar during the Congress days from Malaysia,
Indonesia and Cambodia. We also showed interest in forming a haemophilia
society for ASEAN. We would be able to lobby the ASEAN governments to improve
the care and treatment of haemophilia as one voice. I will keep in touch and
work with these people to form an ASEAN Haemophilia Association in a few years.
Goodbye, Melbourne
The Farewell Dinner also gave me a
perfect condition to make friends with the leaders from haemophilia communities
throughout the world. I talked with a president of the Vietnam Haemophilia
Association –another contact from ASEAN, young people from Australia and New
Zealand, and the doctors and nurses specializing in haemophilia.
Before I came back, I took a tour
around the city, Melbourne, in wheelchair. The streets were teeming with people
of different sorts. The shops were full of souvenirs. There were street
musicians entertaining the pedestrians. Even the city was dancing along the
tunes of the street musicians.
Having haemophilia and living in an
isolated country, I always have the feeling of ‘only me’. This is the first
time in my life I have seen so many people who have haemophilia at one single
place. Their happiness and motivation diffused to me. Along with other gifts
from Fred, Maria and their son, Damian, Melbourne gave me another gift – courage.
 A courage to live with haemophilia
and be a community leader for the people with haemophilia in Myanmar is
probably the most important gift I have received from the Congress in Melbourne.
 
Aung
Kaung Myat

Management of Hemophilia with No or Limited Factor

 Greetings from Down Under!
I’m attending the World Federation of
Hemophilia Congress in Melbourne, Australia. I’ve been attending these since
1996, when it seemed I knew everyone, and now, with 4,000 attending from 128
countries, it’s at once hard to see familiar faces, and yet, that’s a positive side
effect of the success of the WFH’s outreach to so many patients, physicians and
partner organizations globally.
Aung from Myanmar: The face of
hemophilia in the Third World
The opening plenary yesterday, led by
WFH president Alain Weill, welcomed everyone, and provided some surprises.
My concern is always access to
product for those in developing countries. Indeed, in the opening ceremony
Sunday night, Weill announced something to the effect that this was a great time
in hemophilia, a great era. Treatment for all! That’s the slogan. Well, yes and
no. Not if you’re a child in the heart of Africa.
But there was great
news at the plenary Monday morning. Weill said that since 1996 WFH has
distributed 248 million IUs of product in 86 countries, helping about 90,000
people with bleeding disorders. (I’m proud to note that Project SHARE, a
program run by two people, me and Zoraida, has distributed since 2002 about 60
million IU to about 55 countries) Weill announced some amazing product donation
pledges: Biogen Idec and Sobi have agreed to donate 500 million IUs of factor
over the next five years to WFH’s Humanitarian Aid Program. Grifols committed
to 60 million IUs over a three-year period. And the Italian Centro Nazionale
Sangue (CNS) announced donations of up to 30 million IUs of factor VIII per
year over a five-year period.
Alain Weill and Dr. Gabriele
from CNS Italy 
As the Soci CEO said,
we want to stop thinking of donating product at the end of the day, and make it
the first thing we think about in the morning. In other words, this will allow
WFH to plan strategically how to use product donations to improve care, rather
than leaving it to act in crisis mode (which is often how Project SHARE
operates, and it’s difficult to operate like that). So the donations will be
charity used with a strategic purpose to enhance development. Awesome.
I attended an interesting meeting
called the Management of Hemophilia with No or Limited CFCs, with Carlos Gaitan Fitch of Mexico as facilitator.
Four speakers presented how they manage hemophilia with little or no factor.
Ricarte Felipe, new president of HAPLOS
of the Philippines, age 50, reviewed his life growing up without factor. He
spoke from a wheelchair that day, and from which he was confined for 3-7 years of
his young life. He was diagnosed at age 8 with hemophilia A. At age 12 lost his
left eyesight in an accident. Yet he managed to get a college diploma despite the
challenges. Only in 1986 was he started to be infused with plasma and cryo. In 1988
he received his first infusion of factor due to a tooth extraction. What a survivor!
He shared that factor in the
Philippines is $100 for a 300 IU vial. And while in 2010-2013, he was treated
mostly with CFC (clotting factor concentrate), factor is not available much in the
Philippines. The government does not buy it. And it is so expensive, most
families cannot afford it.
So how do Filipinos manage? Support
from HAPLOS consists of psychosocial workshops, camps, workshops, and “Mass
healing,” where attendees at church pray for the patients.
Zoraida Rosado and Agnes Nalubiri
of Uganda
What was sadly missing from this
touching account was this: what is HAPLOS doing to secure factor, to change the
destiny of the children being born right now with hemophilia in the
Philippines? It’s difficult to listen to the suffering, especially from a
leader, and not hear about what is that organization going to do to change
this.
Dr.
Gilian Wharfe,
University of West Indies, Jamaica, also
presented. I’ve known Dr. Wharfe for many years and have visited Jamaica twice
to meet with her and the patients. She clearly laid out the issues facing
Jamaica: high unemployment, stagnant economy, inflation, and factor costing $
.50 per unit, beyond what parents can pay (we know; they contact us regularly),
makes it impossible for the government to consider putting factor in the
federal budget. The only access to factor is from donations.
Laurie Kelley with long time friends Massod Fareed Malik
and Deon York, each presidents of their country’s hemophilia
organizaiton (Pakistan, New Zealand)
With approximately 200 patients, and only one HTC at UHWI (which
is not a public hospital; the patients must pay), one national blood
transfusion center and  several
collection centers, Jamaica struggles to provide care to hemophilia patients. The
stopgap measures for care include: prevention of bleeds, early treatment of
bleeds (How can you do that with limited access to factor, distances to travel,
long waits for cryo or FFP to be thawed, etc?) and educating patients about how
to avoid bleeds and recognize bleeds early.
It was a rather bleak assessment, and a classic example of life in
the developing world with hemophilia. You have to admire the physicians like Dr.
Wharfe who must practice under these conditions.
Dr.
Daniel Hart
, hematologist at Barts
and The London School of Medicine, spoke about his experiences twinning with
Bangladesh and The Royal London Hospital Haemophilia Centre. It was an
excellent summary about how twinning can help slowly transform a country.
Twinning means the medical center in a developed country pairs with one in a
developing to share best practices and hopefully, to help resource the less
developed center.
Aussies Steve Russell and Fred Wensing help Aung of Myanmar
to attend the Congress and buy a wheelchair to take home
Dr. Hart described how Bangladesh uses “.001 IU per capita,”
compared to 5.8 IU per capita in Australia.  Numbers like these give hard, cold facts to global factor
disparity. He covered a lot of ground in his talk, but what stuck out were two
things:
1. Diagnostic accuracy is fundamental, as well as access to
expertise, advocacy (really important—hitting up the government, emergency
centers, pushing the national hemophilia standards everywhere), and patient and
physician education.
2. Perspective: Hart showed an old trailer in an old photo, and
said this was how the treatment center in London, now a world class center,
started. In just an old trailer. His photos progressed to a high-end sports car!


So conditions now do not have to persist over time. Treatment can
improve. But… and the Philippines should heed this… you cannot get anywhere if
you don’t fix up the trailer. Advocacy is a must—pushing the national agenda, having
a strategy, and first knowing what you want.
And everyone wants factor. Trust me.
Laurie Kelley with friends Richard and Lynley Scott of
New Zealand
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“Merhaba” from Istanbul

At last, a converter and internet access! Thanks to all who faithfully waited to read this blog.

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.” (Please visit www.wfh.org to download the four issues of Hemophilia Daily.)

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! (Read news reports even today; the opposition is being blocked from campaigning, there are calls of Mugabe being guilty of “rural genocide”; aid agencies are now being targeted as acting illegally against 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!

Check in tomorrow…

(Photos from top: Blue Mosque; With Dmitry Chistyakov, president of the St. Petersburg Hemophilia Society (Russia); With Dr. Uri Martinowiz, chief hematologist of Israel; With Daniel from Romania)

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