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 Tuesday, May 08, 2012
‘5,000 children diagnosed with thalassemia annually’
Shahid Husain
Karachi
Thalassemia is a major health problem and the most prevalent genetically transmitted blood disorder, with a carrier rate of five to eight percent in Pakistan. Around 5,000 children are diagnosed each year, according to President Pakistan Medical Association Sindh Dr Samrina Hashmi.
“Thalassemia is a lifelong disease and needs a lifelong treatment. Due to the severity of the disease and the expensive treatment, a prevention programme should be instituted.”An awareness programme in schools, colleges and universities should be started to educate students, she said. In addition, she added the study of the disease should be included in high school curriculums. The electronic and print media could also play a vital role in creating mass awareness of the disease, Hashmi said.
Work should be started on Thalassemia Index cases and their first degree relatives should be screened, she added. Hashmi further suggested that all thalassemia centers should share their data about screenings carried out at their centers on an annual basis, and these centers should also be affiliated with children’s hospitals, for the multidisciplinary care and survival of children.
A law stressing the screening programme of the genetic blood disorder should be passed and implemented, she observed. Prevention programme requires data collection followed by interpretation.
“In Pakistan we have promoted adequate knowledge about polio, hepatitis, HIV but nothing about thalassemia. We should first provide information to the general public and then give them time to interpret.”
Thalassaemia management in Pakistan covered about a meager four percent of the current health-related expenditure of the government. Screening to identify carriers, genetic counseling and prenatal diagnosis can greatly reduce the rate of affected births and improve the prognosis of affected patients.
Carrier screening should consist of a complete blood count, as well as hemoglobin electrophoresis or hemoglobin high performance liquid chromatography, Hashmi said. “Prenatal diagnosis should be offered to a pregnant woman or a couple at risk of having a fetus affected by a clinically significant thalassemia or haemoglobinopathy. Prenatal diagnosis should be performed with the patient’s informed consent, however,” she said.