JEDDAH, 19 October 2003 — For the past six months, Abeer Almanabri has been conducting a public awareness campaign and speaking to regional governors and health officials about the need to implement a program for premarital blood tests.
She is the Western Region director of the Project for the Prevention of Inherited Blood Diseases, a volunteer project under the Arab Gulf Program for United Nations Development Organizations. The main focus of the project is to prevent the spread of sickle cell anemia in Saudi Arabia. Her efforts and those in other regions are finally bearing fruit. Prince Abdul Majeed, governor of the Makkah region, donated the equipment for three blood-test laboratories to the project. A fourth came from the Economic Directorate of Makkah, which facilitated the establishment of four clinics in the Maternity and Children’s Hospital in Jeddah and Makkah, the Children’s Hospital in Taif and the General Hospital in Qunfudah.
The governor already made premarital blood tests mandatory in the region. “This has been in force for three months, and people have been cooperating. They’ve told us that they are comfortable asking for the blood test because everyone has to do it, and it’s not just sickle-cell carriers who are singled out,” Almanabri said.
In Qassim region, marriage officials are asked to encourage couples to have the test, but it remains voluntary.
In Jizan, where the test is also optional, Prince Alwaleed ibn Talal and the Ministry of Health have established two labs, which are not enough. In Baha there is only one lab. “I implore businessmen and others to donate to the project. People need these labs, and they only cost SR125,000,” Almanabri said.
“Without convenient access to labs, people will be discouraged from having the tests even though they are aware of the risks. The Ministry of Health must also do its part in providing these labs.”
Over a year ago the Council of Ministers issued a decision for the Ministry of Health to provide free blood tests to all comers and to conduct an awareness campaign. It allocated SR5 million a year for three years to enable the ministry to do this.
When Arab News met with Almanabri in April, she said the MoH had not started enforcing the decision. The Ministry claimed that people would be reluctant to take the test for social and religious reasons.
“But we have spoken to many of the religious leaders in the country and they were all convinced and issued statements in support of doing the test for the good of the society,” Almanabri said. “If we don’t start now, in 50 years there will be 12 million Saudis either carrying the trait or with the disease,” she added.
A month later, the ministry announced it would implement the program in cooperation with the Ministry of Information and the Ministry of Islamic Affairs to educate the public and marriage officials, and vowed to guarantee the confidentiality of the test results.
Saudi Arabia has one of the highest percentages in the world of people who are either carriers of sickle cell trait or have the disease — in some regions reaching 30 percent of the population. Sickle cell anemia is spread mainly through inheriting abnormal hemoglobin from both parents, who may be carriers without knowing it. The sickle cell hemoglobin is present for life.
It is among a group of inherited red blood cell disorders. Normal red blood cells are round like doughnuts, and they move through small blood tubes in the body to deliver oxygen.
They become sickle when a change occurs to the hemoglobin, the oxygen-carrying component of the red cell, and thus causes it to form long rods in the red cell when it gives away oxygen. Sickle red blood cells become hard, sticky and shaped like sickles used to cut wheat. When these hard and pointed red cells go through the small blood tube, they clog the flow and break apart. This causes extreme pain, organ damage and a low blood count, or anemia. There is no cure for the disease and patients have to take pain killers for life.
“They need to be hospitalized twice to four times a month due to complications, which means they cannot have a regular learning and working life,” Almanabri said.
There are different types of sickle cell disease. One of the most severe is thalassemia, where the body does not produce enough alpha or beta protein in the hemoglobin and thus the red cells do not form properly and cannot carry sufficient oxygen. A person who carries the genetic trait of thalassemia will usually experience no health problems other than a possible mild anemia. Physicians often mistake the small red blood cells of the carrier as a sign of iron deficiency anemia and incorrectly prescribe iron supplements, and this is what happened with Almanabri.
The only way to detect the presence of the trait is a simple blood test called the hemoglobin electrophoresis. “When the man and woman are both carriers of the trait, in every pregnancy there is a 25 percent chance that the baby will have the disease and a 50 percent chance it will be a carrier,” Almanabri said. When the lack of beta protein in the hemoglobin is great enough it causes moderate to severe anemia and significant health problems, including bone deformities and enlargement of the spleen. This condition requires regular blood transfusion and extensive ongoing medical care.
These blood transfusions, every two to three weeks, lead to iron-overload, which must be treated with chelation therapy to prevent early death from organ failure. This therapy involves the patient undergoing the difficult and painful infusion of a drug, desferal, through a needle attached to a small battery-operated infusion pump and worn under the skin of the stomach or legs five to seven times a week for up to twelve hours. “This is a very painful treatment but it’s the only one available now,” said Almanabri, whose son has thalassemia.
The Saudi government spends SR100,000 a year on treatment per patient and gives SR200 million a year in financial support to the families of these patients. “Every day in Saudi Arabia, 12 babies are born with the disease and 154 are born carrying the trait,” Almanabri said.
