Incidence rising: Battling thalassaemia, the undetected killer
Although detectable before birth, lack of resources and awareness make disease rampant.
Mass screening of a large population is not realistically possible. PHOTO: NEBATA.CO.UK
ISLAMABAD:
The creation of a thalassaemia-friendly capital through enhanced awareness and prevention campaigns remains a dream unfulfilled.
Speaking at the conclusion of a day-long workshop on ‘Antenatal Diagnosis of Thalassaemia’, Thalassaemia Awareness and Prevention in Pakistan (TAPP) President Ayesha Abid shared that a year ago, the top officials of Capital Development Authority’s (CDA) directorate of health services (DHS) declared Islamabad a thalassaemia-friendly city, claiming that campaigns for mass awareness will be launched to sustain this title.
“Sadly, this declaration was mere words — to date, not even a single step has been taken for this cause,” said Abid.
Data gathered from hospitals in the twin city puts the estimated number of thalassaemia major patients in Islamabad and Rawalpindi between 3,000 and 4,000.
“Over 2000 children with thalassaemia major are registered at the Pakistan Institute of Medical Sciences (Pims),” she said.
CDA Health Services Director Dr Hassan Urooj said the impression that the CDA DHS has not upheld its claims is false. Around 11 medical officers at the medical centre functioning under CDA have been educated about thalassaemia. Creating awareness is more challenging, because asking couples to get tested before marriage will not be entirely acceptable in our society.
“This requires changing the prevalent mindset in our society, which is a hard job. Taking a bride or groom to get tested for a disease is often considered a taboo,” said Urooj.
Workshop on Thalassaemia
One of the key conclusions drawn at the workshop was that the government should establish a central registry for thalassaemia patients of across Pakistan, so that intensity of the disease in individual cases can be determined and an effective prevention and management plan formulated.
Moreover, the general public should be made aware of the importance of family screening, genetic counselling and intervention for the prevention of thalassaemia, as the disease affects more than 70-80,000 Pakistani newborns every year.
For Pakistan, a third-world country with poor health delivery systems and dwindling resources, the responsibility for spreading awareness and facilitating prevention falls on everyone, they added.
“Prenatal diagnosis means testing for genetic disorders such as thalassaemia in a foetus or embryo before it is born,” said General (retd) Dr Suhaib Ahmad, a consultant haematologist. “The basic objective of prenatal diagnosis is to give an informed choice to the parents. It is possible to get a sample from the placenta as early as 10 weeks of pregnancy,” he added.
Over 8,000 prenatal diagnoses for thalassaemia have been conducted in Punjab and Khyber-Pakhtunkhwa since 1994, he informed. Moreover, 2,000 tests were also conducted at three centres in Karachi. Responding to societal reservations on the subject, Ahmad said that most religious scholars in Pakistan, including Maulana Taqi Usmani, agree that Islam permits the termination of a pregnancy in case of a serious genetic disorder in the fetus.
Mass screening of a large population is not realistically possible. We should focus on cascade screening of affected families and targeted screening of the population at risk,” said Dr Sara Khan, a medical officer at the bone marrow transplant unit at Pims.
The workshop was organised by TAPP in collaboration with the mother child health department at Children Hospital Pims, Cure2Children Foundation and Punjab Thalassaemia Prevention Programme.
Published in The Express Tribune, May 4th, 2014.
The creation of a thalassaemia-friendly capital through enhanced awareness and prevention campaigns remains a dream unfulfilled.
Speaking at the conclusion of a day-long workshop on ‘Antenatal Diagnosis of Thalassaemia’, Thalassaemia Awareness and Prevention in Pakistan (TAPP) President Ayesha Abid shared that a year ago, the top officials of Capital Development Authority’s (CDA) directorate of health services (DHS) declared Islamabad a thalassaemia-friendly city, claiming that campaigns for mass awareness will be launched to sustain this title.
“Sadly, this declaration was mere words — to date, not even a single step has been taken for this cause,” said Abid.
Data gathered from hospitals in the twin city puts the estimated number of thalassaemia major patients in Islamabad and Rawalpindi between 3,000 and 4,000.
“Over 2000 children with thalassaemia major are registered at the Pakistan Institute of Medical Sciences (Pims),” she said.
CDA Health Services Director Dr Hassan Urooj said the impression that the CDA DHS has not upheld its claims is false. Around 11 medical officers at the medical centre functioning under CDA have been educated about thalassaemia. Creating awareness is more challenging, because asking couples to get tested before marriage will not be entirely acceptable in our society.
“This requires changing the prevalent mindset in our society, which is a hard job. Taking a bride or groom to get tested for a disease is often considered a taboo,” said Urooj.
Workshop on Thalassaemia
One of the key conclusions drawn at the workshop was that the government should establish a central registry for thalassaemia patients of across Pakistan, so that intensity of the disease in individual cases can be determined and an effective prevention and management plan formulated.
Moreover, the general public should be made aware of the importance of family screening, genetic counselling and intervention for the prevention of thalassaemia, as the disease affects more than 70-80,000 Pakistani newborns every year.
For Pakistan, a third-world country with poor health delivery systems and dwindling resources, the responsibility for spreading awareness and facilitating prevention falls on everyone, they added.
“Prenatal diagnosis means testing for genetic disorders such as thalassaemia in a foetus or embryo before it is born,” said General (retd) Dr Suhaib Ahmad, a consultant haematologist. “The basic objective of prenatal diagnosis is to give an informed choice to the parents. It is possible to get a sample from the placenta as early as 10 weeks of pregnancy,” he added.
Over 8,000 prenatal diagnoses for thalassaemia have been conducted in Punjab and Khyber-Pakhtunkhwa since 1994, he informed. Moreover, 2,000 tests were also conducted at three centres in Karachi. Responding to societal reservations on the subject, Ahmad said that most religious scholars in Pakistan, including Maulana Taqi Usmani, agree that Islam permits the termination of a pregnancy in case of a serious genetic disorder in the fetus.
Mass screening of a large population is not realistically possible. We should focus on cascade screening of affected families and targeted screening of the population at risk,” said Dr Sara Khan, a medical officer at the bone marrow transplant unit at Pims.
The workshop was organised by TAPP in collaboration with the mother child health department at Children Hospital Pims, Cure2Children Foundation and Punjab Thalassaemia Prevention Programme.
Published in The Express Tribune, May 4th, 2014.