Health experts and social activists demanded legislation for premarital thalassemia tests and awareness campaigns to control the spread of the genetic blood disorder.
They also called for avoiding cousin marriages as these were a major cause of thalassaemia disease spread in the country. These views were expressed by the participants of an event organised in the garrison city on World Thalassemia Day 2023.
Meanwhile, the Punjab government, which provides only free blood screening facilities to thalassemia patients, has indicated to provide 100% free treatment.
Due to the rapid growth of the hereditary and contagious disease of thalassemia and the most expensive treatment and the distressing situation of blood transfusions every month, the government has not been able to do much to get the patients and their parents out of this situation, however, the blood donation work for thalassemia patients in the private sector is ongoing on a large scale.
According to health experts, there are three levels of thalassemia, the first level is thalassemia minor, the second is intermediate, and the third is major. The body stops producing blood when children suffer from thalassemia between the ages of seven months and one year. The only treatment for thalassemia is a bone marrow transplant, which must be done at an early age.
Asad Azam, project director of Pakistan Sweet Home for Thalassemia, says that there are currently 100,000 children suffering from thalassemia in Pakistan and every year it is increasing by 15,000.
“In order to end this, we have to make legislation like Iran, Maldives, Cyprus so that marriage is not allowed if the girl or boy is diagnosed with this disease before marriage and treatment of the patient may be started,” he said.
“In this regard, the government of Khyber Pakhtunkhwa made a formal legislation in 2009 where a thalassemia test is mandatory for marriage,” he explained. “However, this important law has not been implemented there in letter and spirit.”
Earlier, addressing the event, Punjab Health Minister Dr Jamal Nasir said: “At present, the Punjab government is providing free screening facility to thalassemia patients.” He claimed that efforts were being made to make the vaccination and complete treatment 100% free for thalassemia patients. “The lifeline of a thalassemia patient is blood and donating the blood protects the donors from cancer, heart attack and stroke diseases.”
On the other hand, while talking to a state-run news channel, Professor Hassan Abbas Zaheer, an expert on thalassaemia, explained that families with a history of thalassaemia must screen their children before marriage to help control the spread of the disease in the country.
The main objective of celebrating World Thalassaemia Day was to draw the attention of the general public, patient associations, public authorities, and healthcare professionals to promote actions on prevention, management, or treatment of the disease in a patient-centred manner.
He said thalassaemia is a genetic blood disorder and called upon philanthropists to play an active role in providing relief to the patients.
Replying to a question about the control of thalassaemia, he said, it is a difficult task, it can easily be achieved via the assistance of prenatal diagnosis and prevention programmes only.
Published in The Express Tribune, May 9th, 2023.
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