Opening Address By SPS (Health) At 11th International Thalassaemia Conference 2008, 13th International Thalassaemia International Federation Conference For Thalassaemia Patients And Parents

08 Oct 2008

By Mr Hawazi Daipi

Good morning

Mr. Panos Englezos, President of Thalassaemia International Federation

Mr. Derrick Lim, Chairperson of Organising Committee

Professor Ivy Ng, Advisor to Scientific Committee

Dr Angeline Lai, Chairperson of Scientific Committee

Ladies and Gentlemen

1. It is my pleasure to be here today at the 11th International Conference on Thalassaemia and Haemoglobinopathies and the 13th International TIF (Thalassaemia International Federation) Conference for Thalassaemia Patients and Parents.

2. I’m proud to learn that Singapore is only the second country in Asia (after Thailand) to host this important event. With a line-up of more than 60 international and local speakers, specialists and renowned practitioners, I’m sure this Conference will be an excellent platform for sharing and learning about the subject of thalassaemia.

Thalassaemia & its burden

3. I understand that thalassaemia is an inherited condition, in which there is a disorder in the production of haemoglobin, the protein that carries oxygen in our red blood cells. In the most severe form, known as thalassaemia major, the patient will develop severe anaemia by a few months of age.  From that point onwards, the child will require regular visits to the hospital for blood transfusions in order to have a chance at normal growth and development. Regular blood transfusions relieve the symptoms of anaemia, but they are not a cure, and can also result in other problems. The most significant of these is iron overload, which can cause serious problems such as heart failure, liver disorder and joint pain.

4. In Singapore, there are currently 87 persons on our register living with thalassaemia major. These numbers are relatively small compared to our population size. However, for each one of them and their families, this is a personal tragedy. For there is no doubt that the diagnosis of thalassaemia major is a devastating one. There can be feelings of tremendous guilt in the parents. For the patient, the condition means a lifetime of regular visits to hospitals and frequent injections. He or she may miss out on some of the normal aspects of growing up. Medical treatment can interfere with quality of life, and can be both psychologically distressing and emotionally exhausting. To compound this, the financial burden associated with thalassaemia can be substantial. It is important therefore, for the government to lend a hand where needed.

Government support for patients with thalassaemia

5. In Singapore today, thalassaemia patients requiring medical treatment can access subsidised care in government hospitals and outpatient clinics. Iron chelation, which helps to reduce iron overload, is an important part of the medical treatment for thalassaemia. In the past, the only iron chelation therapy available was a painful injection lasting at least 8 hours. There are now safe and effective oral medications available. I am happy to note that one of them, Deferiprone has been added to our Standard Drug List, and patients can now receive a 50% subsidy for the use of this drug. Furthermore, new technologies have been brought in. For example, doctors can now use a Magnetic Resonance Imaging or MRI scan to more accurately detect iron overload.

6. With regular blood transfusions, combined with high-quality medical treatment and therapy, thalassaemia patients have a chance to live productive, fulfilling lives. For example, I’m told that we have our first pregnancy in a thalassaemia major patient in Singapore, who is due to give birth anytime now. We also have a member of the organising committee of this conference, Kymn, also a sufferer of thalassaemia major, who is an active scuba diver with over an impressive 100 dives to her name! They are inspirations to all thalassaemia major patients around the world. I am very happy for them, and glad that many persons with thalassaemia major have steadfastly refused to let their condition prevent them from leading a normal life.

The National Thalassaemia Registry

7. Nevertheless thalassaemia major imposes a huge burden on patients and their families. The thalassaemia genes are common in people of Mediterranean, Middle Eastern and Asian descent. In Singapore, it is estimated that about 4.5% of our population carry the genes for thalassaemia. If both partners in a marriage carry these genes, they can pass these genes to their children who may then suffer from thalassaemia major.

8. In Singapore, the National Thalassaemia Registry was set up in 1992 to screen family members of thalassaemia carriers, and to provide counselling for those who carry the genes. In addition, the Registry also screens and counsels family members of persons suffering from thalassaemia.  Prenatal diagnosis testing services are also available for pregnant women.

9. In 2007, the Registry screened 1,977 persons for the thalassaemia genes. Since its inception, a total of nearly 19,000 people have been screened. The screening tests, counselling, and prenatal diagnostic services offer information to allow couples to make their own decisions about having children. These decisions will differ depending on peoples’ beliefs and values.

The Conferences

10. I note that during this conference, experts will share new findings on promising new treatment options such as stem cell therapy and gene therapy. These findings will bring new hope to the many sufferers of thalassaemia in Singapore and around the world. Through meetings like this, where the best minds in the field come together to brainstorm, discuss and share research findings, I hope, together with the many sufferers, that one day we will find a magic bullet that can painlessly and effectively cure thalassaemia major.

11. On this note, let me congratulate Thalassaemia Society (Singapore) and Thalassaemia International Foundation for organising these two conferences. I wish you all a very productive few days ahead.  Thank you.