Aid for kids with thalassemia major

JAKARTA (JP): Lack of public support for children with thalassemia major hampers efforts to help them live a normal life, an activist has said.

Ruswandi of the Indonesian Thalassemia Foundation (YTI) said in a discussion organized by pharmaceutical firm PT Pfizer Indonesia Tbk that children with thalassemia major, also called Cooley's anemia, are in constant need of blood transfusions and medication.

"The treatment is expensive but necessary to prolong the patient's life. The saddest part is that most thalassemia major sufferers are children from the middle and lower economic brackets," Ruswandi said.

According to the World Health Organization, the cost of proper treatment ranges between US$7,000 to $10,000 for each child per year. In Indonesia, there are some 3,000 children known to suffer from thalassemia major.

Thalassemia is classified into two categories: thalassaemia traits and thalassaemia major. Most people with thalassaemia traits are not aware that they have them and can live normally but will pass them on to their offspring.

Meanwhile, those with thalassaemia major are people whose two parents have thalassaemia traits. Physical characteristics will show as soon as a baby enters his third month, such as pale skin, insomnia, loss of appetite or vomiting.

"These children will need blood transfusions every four to six weeks for the rest of their lives. Without proper treatment, they cannot live longer than eight years, or in some cases, they cannot survive their first year," said Ruswandi.

Thalassaemia is an inherited hemoglobin deficiency in the red blood cells, whose function is to transport oxygen from the lungs to other human tissues. Normally, red blood cells die after four months, releasing the iron which is needed to naturally form new red blood cells. But children affected by thalassaemia major cannot create healthy red blood cells naturally so they need to receive periodic blood transfusions to replace the old red blood cells.

However, in the long term, the blood transfusions will lead to an accumulation of iron in the patient's organs because of the failure to use the available iron for the creation of new red blood cells. This condition can be overcome by taking medication called Desferal to encourage the excretion of excess iron from the body through the urine.

In some cases, the physician may suggest the removal of the patient's spleen which can get bigger but can no longer differentiate the healthy blood cells from the bad ones.

"In Indonesia, blood transfusion is the only way but in developed countries, bone marrow transplants are performed to enable the patient to naturally create sufficient red blood cells," Ruswandi said.

Spouses-to-be are advised to have prior blood checks at leading laboratories, such as Prodia, Mahakam or Melawai, before making any plans to start a family.

If two people with thalassemia traits decide to have children, prenatal diagnosis during the first eight to ten months of pregnancy is required to check for the possibility of the child suffering from thalassaemia major.

"If the baby is detected as having thalassemia major, the physician may suggest an abortion," he said, adding that such a prenatal diagnosis in Indonesia could only be performed at the Eijkman Institute at the Cipto Mangunkusumo General Hospital, which has the necessary equipment.

In order to support the activities of the Indonesian Thalassaemia Foundation (YTI), PT Pfizer Indonesia Tbk has been conducting a publicity campaign, dubbed "When Pfizer and I care," this year so as to mobilize public participation.

The public can join the campaign by mentioning the catchphrase "When Pfizer and I care," to the operator or sending a short message service to the company's 24-hour hotline at (021) 7397403, 0811 184 90 70, or 0818 946 266, or by sending an e-mail to Pfizer Healthy Polling at www.searchindonesia.com, or by calling the "When Pfizer and I Care" radio program aired on the Delta, Female and M97 stations.

For each registered phone call, the company will donate Rp 10,000 on behalf of the caller. The fund will be channeled to the YTI and the Indonesian Society Against Epilepsy (PERPEI) by the end of 2001. So far, the company has recorded some 2,700 callers which amounts to Rp 27,000,000.(Maria Endah Hulupi)