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NEWS

An Appeal...

Thalassaemia Society of University Hospital

Address: Department of Paediatrics
University Hospital
Lembah Pantai
59100 Kuala Lumpur
Malaysia.
Telephone: 03 7502275
Fax : 03 7556114


To whom it may concern

 

Re: Donation to help under-privileged children with beta Thalassaemia major receive full iron chelation.

 

This is a letter of appeal for help in our efforts to give better treatment for children with beta Thalassaemia major. Our society named the Thalassaemia Society of University Hospital (THASUH) exists primarily to help each child suffering from beta Thalassaemia major and particularly, children from under-privileged backgrounds receive better treatment and better quality of life.

Beta Thalassaemia major is an inherited disease which causes a disorder to the red blood cells produced by the body. It is one of the most common inherited blood disorders in Malaysia and Southeast Asia where some 5% to 10% of the population irrespective of race or status carry an abnormal thalassaemia gene.

Patients with such a disease become increasingly anaemic daily and therefore, require regular monthly blood transfusions in order to sustain their lives. Typically, patients first present the symptoms in infancy (as early as 4-months old) and thereafter are dependent on such blood transfusions for the rest of their lives.

At present there are only 2 ways to manage this disease. The first is through conservative management i.e. monthly blood transfusion and secondly, through Bone Marrow Transplantation (BMT). The latter means is possible if the patient is able to find a suitable donor from related siblings. BMT is expensive and the procedure also carries its inherent risks. When successful BMT will provide a cure for the patient. Unfortunately only some 30% of Thalassaemia patients are able to find suitable donors for such a procedure.

The majority of Thalassaemia sufferers survive through regular monthly blood transfusions. Without proper and regular blood transfusions the child patient will suffer from poor growth, chronic ill health or even die from heart failure. Whilst regular blood transfusion is a means of sustaining life, it also paradoxically causes an accumulation of iron in the body which, in due course, results in iron toxicity which causes damage to vital organs particularly the heart and liver. An average beta Thalassaemia major child patient is foreseen to have a short life-span who die by his mid to late teens from iron toxicity after enduring diabetes, mellitus, absence of puberty, stunted growth, brittle bones and then liver or heart failure.

Thankfully through advancement of medical science, a drug called Desferrioxamine is now available to counteract this iron toxicity and delay organ dysfunction caused by the iron accumulation. With Desferroxamine, patients have a longer life expectancy with improved growth and a marked decrease in damage to vital organs. This allows them to have normal activities in life or to grow up as capable people in society.

Desferrioxamine is needed to chelate i.e. cleanse the iron from the blood and aid its excretion in the urine. The drug is administered subcutaneously via a battery-operated pump. Patients need to self-administer Desferrioxamine 5 times a week for no less than 10 to 12 hours each time.

Even prior to the Malaysian financial crisis, this drug and the syringe pumps have always been costly. Children from under-privileged families who need Desferroxamine have not been able to start the required post-transfusion treatment. Or those who have used Desferrioxamine have not been able to afford proper doses as prescribed. Their financial incapacity has been further intensified with the current economic crisis.

The battery-operated syringe pump that delivers the drug cost some RM 2,800 per unit. And an average child with beta Thalassaemia major would (depending on size and weight) require between 20 to 40 vials of Desferrioxamine. Per box of Desferroxamine costs approximately RM140 (containing 10 vials). This translates to a monthly average bill of some RM280 (for a child size and age of about 5 years) to RM560 for a teenage child of about 10 15 years old. The burden of such medical cost therefore, increases as the child grows.

On a national level, no less than two (2) attempts have been made to our Ministry of Health to request for Desferroxamine to be made available free-of-charge to patients with beta Thalassaemia major. But these requests have been rejected. A third attempt is currently underway. However, such appeals invariably take time with no certainty to their outcome.

The University Hospital Kuala Lumpur has 80 children with beta Thalassaemia major who are dependent on regular blood transfusions. 50% of these children have not been chelated with Desferroxamine as prescribed. Whilst some further 25% are on irregular doses of this drug.

THASUH would be very grateful if your esteemed Company / organisation would consider helping these unfortunate and under-privileged children. Your financial aid, however much the sum may be, will enable us to buy Desferroxamine for the use of such children. Kindly make all cheques payable to THALASSAEMIA SOCIETY OF University Hospital (THASUH) and send it to:

Associate Professor Chan Lee Lee,
Thalassaemia Society of University Hospital
c/o Department of Paediatrics,
University Hospital,
59100 Lembah Pantai
Kuala Lumpur.

Your financial aid will be earmarked for the purpose of buying Desferroxamine for the use of such underprivileged children. It is our deepest wish to see each child under our hospital care receive the proper dosage of Desferroxamine and lead a more vital life in time to come.

Or your company / organisation may consider it more meaningful to specially finance the cost of Desferroxamine for an identified child/children and be ensured that a named child/children so identified is receiving your generosity. If this is the case your company / organisation may wish to be the first in becoming a pioneer participant in an "adoption" scheme to pay for the supply of Deferroxamine to the child or children on a long-term basis. In the event that your company / organisation would like to consider such an "adoption", we would be happy to supply any additional information you may require.

Thank you for taking your time in reading this letter. We look forward to hearing from you soon.

 

Yours sincerely,

Assoc. Prof. Chan Lee Lee
Department of Paediatrics
Chairman of Thalassaemia Society of University Hospital (THASUH)