I am very excited and privileged to be going to Vietnam next week (March 16, 2012). It is a country I have wanted to visit to take in the atmosphere and hopefully to get some good photos. Some colleagues from the Irish Haemophilia Society (I.H.S.) are visiting the Vietnamese Haemophilia Society in Hanoi and Ho Chi Minh City and thankfully they have agreed I can join them and take some photographs for them as well. One of the strategic goals of the I.H.S. is to assist the World Federation of Haemophilia in their goal of improving Haemophilia care worldwide. To this end, the I.H.S. has embarked on a twining programme with the Vietnam Society.
The great news for Haemophilia is that in the last 40-50 years there has been huge strides in the treatment of the disorder. Prior to the 1960’s there was no treatment and people with Haemophilia had a very low life expectancy and what life they had was largely blighted with pain, deformity and of very low quality. But since then treatment has improved greatly with today’s young boys being treated prophylactically (2-3 times a week), meaning they can live virtually normal lives. Unfortunately, it is a hard fact of life, that of the estimated 400,000 people living with Haemophilia only 25% receive adequate treatment. Vietnam is a country that is trying to cope with a very low level of treatment and difficult hospital conditions. Although the doctors are very committed and do their very best without the proper treatment it is a great shame to see young people suffer so greatly. It is very reminiscent of the conditions and quality of life suffered by people with haemophilia in Ireland some 40-50 years ago.
The objective of the twining programme is to build the capabilities and skills of the local society. This is done mostly through workshops on organisation, governance and community building so that they can help each other, but also to build their advocacy skills to show the value of treatment to those in authority. Also through some direct advocacy to the health authorities and treatment providers and companies it is hoped that overall treatment can be improved over time, the sooner the better!