Drive to raise global awareness on haemophilia
Updated
The World Federation of Haemophilia estimates there are 400-thousand people with the rare bleeding disorder, but up to two-thirds of sufferers are not properly diagnosed, while others miss out on treatment, often suffering crippling pain and chronic disability as a result.
Now the Federation has launched the Global Alliance for Progress in haemophilia, to increase diagnosis and treatment rates, especially in developing countries.
Presenter: Sen Lam
Speaker: Dr Huyen Tran, Haemophilia Treatment Centre at Melbourne's Alfred Hospital
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TRAN: Medicine in general making the correct diagnosis is of utmost importance because if we don't get that right then we can't implement the appropriate treatment for our patients.
LAM: And do diagnosis and treatment significantly improve the quality of life for haemophiliacs?
TRAN: Absolutely, so everything starts with the diagnosis and once we have that right we know what we're dealing with, then we can implement the treatment, and in this case, in haemophilia's case replacing the patient with the factor that they lack so that they don't bleed.
LAM: And when we speak of treatment what does that involve exactly?
TRAN: So treatment, haemophilia firstly is a genetic condition and these patients essentially lack the important clotting factors that otherwise normal people would have. So the treatment is to replace what these patients are lacking. So for example patients with haemophilia A lack what we call factor 8, which is very important in the clotting cascade. And now we have recombinant factors that we can just give these patients and elevate the level this factor that they're missing so that they don't bleed spontaneous, all with surgical procedures.
LAM: Dr Tran I understand you're fairly familiar with the situation in Vietnam where haemophiliacs are concerned. Just generally though how are health care professionals in Asia coping with looking after haemophiliacs?
TRAN: Yes look I think your reference to the GAP program is important. Firstly from the first world country such as Australia we're very blessed because we have the availability of these products that we can provide the patients with. In third world or developing countries, these products are less readily available and as a result patients have compromised care. And further back to the issue of diagnosis of haemophilia, it goes back to having a very good laboratory setup to be able to investigate the patients, so that's another important aspect as well. So it's not one thing, but it's usually a combination of things. So in Southeast Asia with the GAP program some of my colleagues at the Children's Hospital for example have been going to Hanoi for example to help them setup a treatment program and for us at the Alfred Haemophilia Treatment Centre over the years we've hosted nurses from China and recently from Malaysia for example so they can observe how a haemophilia treatment centre is run in a first world country, and help these patients, well these nurses and other sometimes doctors as well, to give them the skills that they can setup locally. And certainly one of the things that contributed to the extended survival of patients with haemophilia is the availability of a comprehensive treatment centre.
LAM: Well the transfer of skills is one thing but do you think though that funding is still the key to the treatment of haemophiliacs in Asia?
TRAN: Yes treating patients with haemophilia in general is not cheap because the factors replacement is not cheap and that is the difficulty. In Australia, the government funds the product replacement for our patients and that really hasn't been an issue for quite a while now. That the same can't be said for patients in third world and developing countries.
LAM: Finally Dr Tran I understand that there's a new phenomenon now, the elderly with haemophilia, I guess that means that it reflects that the condition is better managed now that people are living longer?
TRAN: Yes absolutely, three things that has over the years has contributed to patients living longer, haemophilia patients, and a. that's the availability of factor concentrate, and b. the availability of a comprehensive treatment centre, and c. patients with severe haemophilia we provide them now with a prophylaxis program whereby we're able to effectively change patients with severe haemophilia into mild haemophilia, so they don't bleed spontaneously and we improve their quality of life. So these patients are living much longer and longer, and one of the things that we're observing now is that we are now having to deal with non-haemophilia related co-morbidities, as these patients are living into their sixth and seventh decade of life
