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Pioneering course decreases suffering for people with haemophilia around the world
Published 14 October 2016
75 percent of all people with haemophilia around the world are left untreated, which causes a great deal of suffering and many severe disabilities. But it is possible to lead a healthy life. This is what the internationally known contract education Haemophilia – from diagnosis to therapy is about.
Some 10 years ago, a discussion began outside of Sweden about the difficulty in recruiting physicians to medical centres focusing on haemophilia. This is what encouraged Erik Berntorp, post retirement professor of clinical coagulation medicine at Lund University in Sweden, and his colleagues to establish an international contract education course.
“Haemophilia is a very narrow field as the number of patients is relatively small. Starting a course generates interest in the subject, which might make it easier to recruit young doctors to this area of specialisation”, says Erik Berntorp.
This Lund University course is the first of its kind in the world. Nowadays it is popularly known as “the Malmö course”, and is also exported to different countries in Asia, to which lectures from Lund University go to teach.
“We are driven by a desire to decrease unnecessary suffering around the world. We have the opportunity to disseminate the principles that have proven greatly successful in preventing haemophilia”, he says.
So far, 260 physicians from 38 different countries all over the world have taken the course, and another 20 are expected to do so on 18–20 October when the course is offered for the tenth consecutive year.
Sweden is world-leading within preventive treatments Sweden is considerably ahead of other countries when it comes to preventive treatments. In many other places, such treatments are only prioritised for children.
“Providing preventive injections is extremely expensive. But if you look at it from a larger socio-economical perspective, it makes a major difference in the end”, says Erik Berntorp.
There is a previous study comparing the health economics in Norway, where medication used to be prescribed as needed, and Sweden, where medication was and is administered regularly and preventively. In Norway, this created several additional costs to society, such as joint replacement surgery (four times more common than in Sweden), early retirement, disability support and various adjustments to the patients’ homes. In the end, it became more expensive.
“The fact is that this affects the patient’s entire family, and it’s not uncommon that it decreases the parents’ ability to work as well”, says Erik Berntorp.
Education makes a difference
Haemophilia is a life-long and potentially life-threatening disease, from the cradle to the grave. In the 50s in Sweden, half of the patients did not live past the age of 30.
“When I took the one-hour flight to Lithuania 20 years ago, it was like travelling 50 years back in time. Almost all of the patients were in wheelchairs and their general state was miles apart from the patients in Sweden. Thanks to our education efforts, things have started to improve.”
Today, approximately 1 000 patients in Sweden have been diagnosed with haemophilia, 350 of whom have the most severe form where the blood contains less than one per cent of the coagulating protein (clotting factor VIII or IX).