European Haemophilia Consortium – Haemophilia Stories
The European Haemophilia Consortium (EHC) is an international non-profit organisation that represents 45 national patients’ organisations of people with rare bleeding disorders from 27 Member States of the European Union (EU) and most Member States of the Council of Europe.
The EHC represents approximately 90,000 people diagnosed with a rare bleeding condition such as haemophilia, von Willebrand Disease (VWD) and other rare bleeding disorders across Europe. However, it is estimated that many more live with an undiagnosed rare bleeding disorder.
The EHC actively supports its National Member Organisations (NMOs) at national and European levels, and also helps NMOs to engage with each other, with the objectives of:
- Improving quality of life of people living with rare bleeding disorders,
- Improving diagnostic and treatment facilities,
- Ensuring adequate supply of – and access to – safe factor concentrates,
- Promoting patients’ rights and raising ethical issues,
- Following and influencing developments in European health policy,
- Understanding the status of haemophilia care in member countries through regular surveys,
- Stimulating research in all fields related to haemophilia and related rare bleeding disorders.
The EHC draws on the knowledge of patients, healthcare professionals, the scientific community, the European institutions and the pharmaceutical industry to share expertise within Europe. The EHC also collaborates closely with other European patient organisations to ensure a strong collective voice for people with rare bleeding disorders.
These short videos are a segment from the Haemophilia Stories movie – a documentary that follows the lives of individuals of different generations and with different types of haemophilia living across Europe. In an hour, we are shown the great disparities that still remain in terms of access to treatment and health services and the consequences that leads to (http://haemophiliastories.eu).
The full video, Haemophilia Stories can be seen below.
Haemophilia Story from Sweden
At age 17 Gert Grekow lost his brother to haemophilia, a condition he too suffered from and had to endure for years without medication. But today, at 73, Gert Grekow is more alive than ever.
It’s summertime in the small town of Vellinge. The wind is nearly still, apart from a quiet breeze moving through the open green fields, characteristic of the south of Sweden. In the midst of the fields stands a white house, in front of which Gert is waiting; excited and a little anxious.
“We met at his home partly to make him feel comfortable, but also to create a contrast between his strong story and the idyllic environment,” says Goran Kapetanovic, the director of the film.
“The landscape was beautiful, everything was in bloom and Gert greeted us with so much enthusiasm. I think he felt a certain pride, he wanted to show us what he had accomplished.”
The reason why Goran Kapetanovic and Gert Grekow met in the first place was because of Anders Molander; the president of the Swedish Haemophilia Society. Anders Molander was interested in hearing from someone who had lived with haemophilia before medication was available.
“It’s a story about being different, a lost childhood but also a story about having the strength to fight,” says Goran Kapetanovic.
“Despite everything that Gert has gone through, he tells his story with clarity and distance. Listening to Gert is like opening a treasure chest of experiences, emotions and perspectives. It’s fascinating how he has stayed so positive and so full of life,” says Goran Kapetanovic.
When 73-year old Gert Grekow was born in the 1940’s, access to haemophilia treatment in Sweden was basically non-existent. In the film he describes the everyday struggles of living with haemophilia, as well as the ignorance surrounding the condition.
“Back then there was very little knowledge about haemophilia and extremely widespread prejudices. Haemophiliacs were in a sense marked, which is why the psychological strain became as big as the physical one, says Goran Kapetanovic and admits to being guilty of some prejudices himself before meeting Gert.
”I thought, like I imagine a lot of people do, that cutting oneself meant you would bleed to death. But through this journey I have learnedt that the biggest problem is the pain and the loss of mobility. Also today’s treatment makes it possible to live a fully normal life.”
In the film Goran Kapetanovic focuses solely on Gert Grekow who is allowed to speak without interruptions or voiceovers. The reason, Goran says, is because he discovered that Gert had the ability to tell a story.
“I realized that all of his pain and experience had been canalized into knowledge. So I let him take the time to tell his story.”
Today the situation for haemophiliacs in Sweden is completely different. Most people born with haemophilia live a completely normal life thanks to prophylaxis – which is regular, preventive treatment –, physiotherapy and other treatments, which have become standard. Still, Goran Kapetanovic is convinced that Gert Grekow’s story is one that needs to be told.
”All around Europe there are still people living without access to medicine, and it is important not to take the treatments we have for granted. They are the result of a years of research development that cost a lot of lives, and we need to acknowledge that.”
Haemophilia Story from Romania
David Banu is just like any other eight-year old who loves to play and run around. The only thing stopping him is haemophilia, which has now made the whole family dependent on a donation that might or might not come.
”I have never met such an energetic, lively and vivacious person,” says Goran Kapetanovic, the director behind the film about David Banu.
“Since I knew that he had a heart condition and had been through several difficult surgeries, I was expecting someone bedridden without much contact with the world. Instead I met this kid with an incredible zest for life who, despite his eight years, felt made me feel like he was an adult.”
They meet in a rainy Bucharest. Goran Kapetanovic takes a taxi through a city in change, where socialism meets new waves of capitalism, to an apartment building in a typical middle class area. Several stairs up he walks through a long dark corridor, leading up to David’s door.
“He kept jumping around and at first I was extremely scared that he would fall and hurt himself. But then I realized that this was the way it had to be. He wanted to feel like any other kid,” says Goran Kapetanovic.
David Banu has a mild form of haemophilia A, which is the reason why he has been denied prophylaxis – which is treatment to prevent bleeding. Instead he has to receive blood donations from Germany.
”This is a typical example of someone stuck in bureaucracy. Since they don’t know how long the donation will continue the situation becomes an enormous struggle and strain for the whole family,” says Goran Kapetanovic, who particularly noticed David’s mother’s frustration and resignation.
”Imagine feeling that your own country let you down, forcing you to go elsewhere for help. As a parent you want to do everything you can for your child, but in this case it’s impossible because of the way society is structured.”
One of the people working to influence the government to change the flaws in the Romanian health care system is Daniel Andrei, the president of the Romanian Haemophilia Association. He was the reason why Goran and David’s family met.
“His way of explaining the problems in Romania was a great help in my work. Daniel himself has suffered a lot from haemophilia, and it’s fascinating how someone can be so open with his experiences and have the strength to share. I’m amazed that there are such enthusiasts in the world who keep on fighting.”
For Goran Kapetanovic, who is a father of two small girls, the film about David Banu was the hardest one to make.
“On the one hand he is the most alive child you will meet, but still you know that there is a lot more hiding under the surface,” he says.
“I have noticed that children who live with this disease are more mature and stable than many adults. David knows how much his family has been affected and he can reason in a way that no eight-year old should have to.”
How is David today?
”I actually don’t know. I think about him now and then and what will happen when the donation ends. It’s very tragic that your birthplace decides which health care you will receive.”
Haemophilia Story from Ireland
President, European Haemophilia Consortium (EHC)
Brian O’Mahony is the chief executive of the Irish Haemophilia Society (IHS). He represents IHS on the statutory National Haemophilia Council and he is the vice-chair of the Tender Commission, established by the Irish government for the procurement of factor concentrates. He previously served as IHS chair for 17 years and as president of the World Federation of Hemophilia (WFH) for ten years. He continues to work as a volunteer with the WFH. Among his activities are writing, advocating, and facilitating training. His publications for the WFH include Monographs on Advocacy, Developing Haemophilia Organisations, Economics and Health Technology Assessments and a Guidebook on National Tender Systems.
A medical scientist by profession, he is a fellow of the Institute of Biomedical Sciences (UK) and a Fellow of the Academy of Medical Laboratory Sciences (Ireland). He has post-graduate qualifications in Management and in Occupational Health and Safety. He spearheaded the advocacy initiatives in Ireland, which resulted in the availability of prophylaxis for children and recombinant products for all people with haemophilia, compensation and life insurance for those affected by transfusion-transmitted infections and a formal role for IHS in decisions on national haemophilia health care policy.
He is the convenor of the Platform for Plasma Users (PLUS), which advocates on plasma and blood related issues with European Institutions on behalf of several non-governmental organisations. He served on the Steering Committee of the European Haemophilia Consortium (EHC) from 2007 to 2011. He was elected as president of the EHC in 2011 and re-elected in 2015.
Brian has severe haemophilia B.
Haemophilia Story from France
Like many other haemophiliacs in France, 31-year-old Timothée Weill was, for a long time, scared of being affected by HIV. Now haemophilia is only a marginal part of his life while his focus is on his newly born daughter.
”I wanted to show how easily he could go to the pharmacy on a Saturday, collect his medicine, go home, take a shot and that was it,” says Goran Kapetanovic when asked to describe the introduction to his film about the 31-year-old Parisian Timothée Weill.
”It shows another depiction of the condition, but one that should be the standard everywhere.”
The salesman Timothée Weill leads an active life in the heart of Paris’ pulsating city centre. He recently graduated university, got married and had his first baby, while haemophilia lingers somewhere in the periphery.
“It felt important to show the normality of a life with haemophilia. There are such extraordinary contrasts between European countries; something that is normal in one country is a privilege in another. But I wanted to show how easy life could be,” says Goran Kapetanovic. Still, he says, it’s apparent that haemophilia did have a strong impact on Timothée Weill.
“He did reflect a lot about what it meant to suffer from an invisible condition: how it would affect his newly born child, what impact it would have in his old age. He was extremely conscious about how lucky he was to be living in France, and the importance of making treatment accessible for the rest of the world.”
Not letting fear get in the way of life
Despite Timothée Weill’s rather unproblematic experience, France hasn’t always been a leading country in terms of haemophilia treatment. Just like all around Europe the risk of being infected with blood-borne diseases was high. In the 1980’s there was an especially high risk of being infected by HIV, something that Timothée Weill feared for a long time.
“A big part of haemophilia is the psychological aspect where you have to come to terms with suffering from a permanent medical condition. I felt that Timothée was able to put everything in perspective, to realize the importance of having a wife and family that support him.”
Goran Kapetanovic is the same age as Timothée Weill, and shares the experience of being a father to small children. This fact helped Goran Kapetanovic to relate to Timothée’s situation, and made it easier for the two to connect.
“When you arrive with cameras and full equipment it can be a bit intimidating for the person you are about to interview, especially if you’re meeting them for the first time and don’t have too much time. It then becomes important to share from your own experiences, and to be able to relate to his,” says Goran Kapetanovic.
Timothées Weill’s newborn daughter is a carrier of the recessive gene that causes haemophilia, which, since she is a girl, means that she is completely healthy. Still the couple never worried about passing on the gene to their child since they don’t see the condition as a limitation.
“Timothée doesn’t let haemophilia win. He knows that with access to treatment you can live a normal life,” says Goran Kapetanovic, who also sees benefits that come from living with haemophilia.
“All haemophiliacs that I have met, no matter their age, have a lot more life experience and are stronger individuals thanks to this condition. They all want to explain, fight prejudices and influence people in power to make a change.”
Haemophilia Story from England
Cassius Lister is just like any 11-year-old, football-crazy kid. Haemophilia came in the way of his last game, but he still keeps on playing, and doesn’t let his condition define him.
In the middle of the English coast-city Bournemouth, in a typical middle class area lives the Lister family. Their brick house is surrounded by a small lawn centred around a football goal. On the top floor of the house, a boy’s room is filled
with football trophies and the walls are covered with posters; amongst others one of Cassius Clay, who has the same name as the owner of the room.
“When we met Cassius he had injured himself and hade to rest for a few weeks. But he still continues to dream about football, to carry on playing and try to become even better,” says Goran Kapetanovic.
“For him this is not a disease, he doesn’t let the diagnosis win.”
Both Cassius Lister and his brother Johnny are on prophylaxis, the only difference being that Johnny started his treatment at birth while Cassius didn’t get access to it until later. This meant that Cassius had to endure some physical pain due to the bleedings, as well as some discrimination.
“His mother told us about one time when he started bleeding on a trip. The cabin crew refused to let him board the plane, says Goran Kapetanovic.
But still Cassius Lister doesn’t let the illness stop him.
”He’s just like any other boy who wants to do good at football practice and doesn’t reflect on his illness,” says Goran Kapetanovic who describes the first meeting with Cassius as a little bit tentative, but strong.
“Even though he was a little shy he could still tell a detailed story about life as a haemophiliac. He believes in himself and doesn’t see haemophilia as a problem, and that made a strong impression on me.”
Goran Kapetanovic first met the Lister Family through Liz Carroll who is the chief executive of the UK Haemophilia Society. He wanted to tell a story from a Western European point of view, to show the differences between the European countries.
“The Lister family have never had to queue in hospital lines since the medication is brought to their door. That gives the family a whole other possibility to plan for the future,” says Goran Kapetanovic. Still he’s convinced that the greatest factor allowing the two boys to live a normal life is the boys’ mother, Hannah Lister.
“She is raising her kids in an amazing way. She refuses to let them be defined by haemophilia,” says Goran Kapetanovic.
“They strive to be a regular family and do everything that other people do. She is already teaching the boys to self-medicate in order to become independent individuals that can make it out in the world. She teaches them that a diagnosis doesn’t have to be an obstacle.”
Haemophilia Story from Bulgaria
Years of pain and bleeding forced 51- year- old Boyan Boyanov to live his life trapped in-between four walls. Thanks to self-medication he can now walk outside his own door, but Bulgarian bureaucracy is still putting a spanner in the works.
”The first thing I noticed when I entered the building was the number of stairs leading up to the apartment,” says Goran Kapetanovic, the director behind the film about Boyan Boyanov.
Goran Kapetanovic arrives in the historical city of Plovdiv on a sunny, summer day. Roman amphitheatres stand side by side next to Orthodox and Catholic churches, while Turkish architectural influences can be seen throughout he city.
In the centre of the city, in an attic apartment on the top floor, Boyan Boyanov lives with his mother. His haemophilia has led to a permanent injury in the knee: a common problem for Bulgarian haemophiliacs of his generation.
“Since there was no elevator it was almost impossible for him to go outside the apartment. Moving was not an option, especially considering his economic situation,” says Goran Kapetanovic who also explains that Boyan Boyanov had been unemployed for a prolonged period of time, despite having two degrees in journalism and philosophy.
”He is an otherwise healthy person who has been forced into unemployment, which of course is an economic strain, but has also made him more introverted. It’s important to remember that there are different aspects of haemophilia, it’s not just a physical condition,” says Goran Kapetanovic.
Just like many other Eastern European countries, Bulgaria had problems with the transition from communism to capitalism after the fall of the Berlin wall. Medical conditions that required regular follow-up fell through the cracks, which became a problem for people suffering from haemophilia.
“Before proper institutions were formed the situation for haemophiliacs was horrible. Medicine and prophylaxis were introduced very late and many haemophiliacs died since they didn’t get treatment on time, says Goran Kapetanovic.
Boyan Boyanov had to live his first years without treatment, and later on bureaucracy created obstacles preventing him from living a normal life.
”Every month he has to go to the hospital and prove that he is still sick, and these are simple things that could easily be solved. Haemophilia cannot be cured, which means that there is no need to be assessed every month in order to receive medicine,” says Goran Kapetanovic.
“The problem is the lack of knowledge about haemophilia, as well as the attitude from the authorities that question people rather than trying to find ways to help them,” says Goran Kapetanovic, who noticed a vast difference in treatment between Eastern and Western Europe. However the biggest difference, he continues, is the one that exists between cities and the countryside.
“If you live in a smaller village in the countryside it’s a lot harder to have contact with organisations, reach hospitals, etc.”
When they first meet, Goran Kapetanovic’s main goal is to try to get Boyan Boyanov out of the dark dim attic apartment. So he helps him down the stairs, and takes him for a walk through the city.
“Since he never leaves the house I wanted to get him outside and have him show me his city. I thought it would bring out a more personal story,” says Goran Kapetanovic, who is also originally from the Balkans, which meant that the two share the same history.
“We could speak in our mother tongue since the languages are very similar. In that way I could ask different questions and understand all the nuances in his story.”
“It was the first time that I had heard of all the prejudicesd and the ignorance that haemophiliacs
face,” says Goran Kapetanovic.
Even though Boyan Boyanov has been through a lot of difficulties due to his condition, he has, since he started prophylaxis the self-medication five years ago, found a balance in life.
“He has become happier, more independent, and sees more opportunities in life. He doesn’t feel as psychologically sick as before, says Goran Kapetanovic.
To learn more about the lives, projects and fantastic work currently undertaken by the European Haemophilia Consortium, please visit: