Towards a vision for the future of haemophilia

To mark World Hemophilia Day on 17 April, Roche is joining the global haemophilia community to raise awareness and increase support for those living with this bleeding disorder. This year’s theme, ‘Treatment For All is the Vision of All’, focuses on overcoming the lack of adequate treatment that the majority of people with bleeding disorders still face, and enabling and empowering them to receive proper diagnosis, education, management and care, no matter where they live.

The haemophilia community

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Alain Weill, President of the World Federation of Hemophilia

For over 50 years, the World Federation of Hemophilia has provided global leadership on behalf of the haemophilia community, and World Hemophilia Day is a critical event in its calendar. We spoke with Alain Weill, President of the World Federation of Hemophilia, about his personal experience with haemophilia and what the day means for the community. Alain can relate to families with a loved one with haemophilia on a very personal level.

“I first became involved with the haemophilia world when our third son was born with haemophilia in 1981. Having had two sons previously without the condition, and with no family history of haemophilia, this came as a big shock to us. Fortunately we were in the Western world where he got proper treatment, and we tried to give him as normal a life as possible. He’s now enjoying life and has his own business. He’s ok!”

Knowing that not everyone has the same opportunities, once retired from his professional career, Alain chose to become further involved with the haemophilia community. He volunteered for the French Hemophilia Society and the European Haemophilia Consortium in Brussels, before being elected President of the World Federation of Hemophilia in 2012. He is extremely passionate about his work.

“I have the extraordinary opportunity to meet people around the world who are incredible. People who live in the most difficult situations you could imagine and despite that, they still smile, they still joke, they still hope and they still struggle. It’s very rewarding to be President of this Federation and to have the opportunity to meet and talk to these people who are absolutely extraordinary.”

World Hemophilia Day – a ‘beautiful event’

Alain believes that as haemophilia is a rare disease, this makes the community very strong.

“I think the rarer a disease is, the more important it is for the community to act together and to be united. Because of the rarity of haemophilia, people could feel lonely or abandoned. This is why World Hemophilia Day is such a beautiful event. On that day, these people who are scattered around the world know that there is something going on in almost every country in the world. This is highly motivating for patients and their families.”

The day is also a fantastic opportunity for educating and raising awareness of the disorder – and with an increase in the reach of online technology, barriers to communication have been broken down, meaning people are far more connected through World Hemophilia Day.

As general public knowledge of haemophilia is still very low, much of the work of the World Federation of Hemophilia is focused on providing education about the disorder. As Alain explains:

“Just ask someone around you – what does haemophilia mean? There is a 99 percent chance that the person you’re talking to will say it is when someone has a bruise or a cut they will bleed. This is correct, but it’s only one percent of the answer. Bleeding can be without any shock, into the joints and intracranial [within the skull]. This is much more serious than a bruise or cut.”

Overcoming intolerance

Alain notes the significant impact a lack of awareness can have for people with haemophilia.

“In so many instances, a young boy with haemophilia will not be invited, for example, to a friend’s birthday party because they will be scared to invite a haemophiliac and that’s a terrible frustration. But that’s nothing compared to what patients and their families endure in other parts of the world like in South East Asia and African countries where they think that a boy cannot get married if he is not circumcised, a procedure which can be life threatening for those with haemophilia and where access to treatment is insufficient. Many people also hide their haemophilia completely as they are worried about discrimination in the workplace. This is a big problem that we have to overcome. Lack of awareness, and intolerance.”

World Hemophilia Day therefore provides an important opportunity to raise awareness and to begin to overcome this intolerance.

A shared responsibility

Roche believes that ensuring people with haemophilia receive appropriate treatment and care, through education and raising awareness, is a shared responsibility. We recognise that achieving this goal is only possible by partnering with the many patients, family members and caregivers, who make up the diverse and supportive haemophilia community. We are proud to support the World Federation of Hemophilia and the entire community on World Hemophilia Day and play our part.

To learn more about World Hemophilia Day and the World Federation of Hemophilia visit their website http://www.wfh.org/en/whd

Tags: Patients