Aid for kids with thalassemia major

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)