K-P’s Thalassaemia problem: Fast traditions, red tape handicap blood screening law
Health department wants meeting of all relevant depts to devise plan to enforce the Act
PHOTO: FILE
PESHAWAR:
Over eight years after it was enacted, implementation of the Khyber-Pakhtunkhwa (K-P) Preventive Health Act 2009 to control Thalassaemia cases in the province has fallen to a familiar affliction – red tape.
The law has become a ping pong ball which is batted between different government departments and even the Nikah registrar – responsible for ensuring premarital blood screening of spouses for both Thalassaemia and Hepatitis C.
According to senior K-P health officials, their department was ready to offer free testing and counselling facilities for spouses. However, the major stumbling block was the Nikkah registrar, the only official entitled to deal with the issue, has yet to provide the requirements and follow directions clearly listed in the law.
Moreover, not even a single government department has shown any interest in fully implementing the law.
The health department, officials said, has suggested that the K-P Chief Secretary Azam Khan call a meeting of the law, auqaf, social welfare and health departments to devise a plan for implementing the legislation.
The law makes it clear that the Nikkah registrar will obtain the blood screening reports for both the diseases. Moreover, the result (whatever it may be) must have no effect on marriage being solemnized.
Further, the law requires the Nikkah registrar to maintain the blood reports for at least two years after signing off on the marriage contract.
Should the Nikkah registrar fail to solemnise a marriage in contravention of the law, their licence can be cancelled. If someone other than a Nikkah Registrar solemnises marriage, they shall be fined Rs10,000.
However, since the law only deals with the Nikkah registrar and has to be coupled with several other functions such as blood testing, counselling, and social services, the law does not have any specific ‘owner’ who is responsible for following up and ensuring that the provisions are adhered to.
Thalassaemia is considered to be one of the most common genetic disorders in the country with a gene prevalence rate of six per cent in the general population – or six out of every 100 people carry the mutant gene.
Over 5,000 children affected by the mutant are born every year, or around 14 every day, officials said. They added that these children require regular monthly blood transfusions and chelation therapy to withdraw the excess iron in their bodies.
These children lay a heavy economic burden on their treatment with each affected child requiring an estimated Rs180,000 for treatment every year. Moreover, bone marrow transplants, the only permanent treatment for Thalassemia currently available, costs more than Rs2million.
With around 4,000 major Thalassemia cases seeking treatment across K-P, the disease is considered a major public health problem.
Officials blame the socio-cultural tradition of inter-family marriages in K-P for the widespread prevalence of the Thalassaemia gene in the population.
Published in The Express Tribune, October 1st, 2017.
Over eight years after it was enacted, implementation of the Khyber-Pakhtunkhwa (K-P) Preventive Health Act 2009 to control Thalassaemia cases in the province has fallen to a familiar affliction – red tape.
The law has become a ping pong ball which is batted between different government departments and even the Nikah registrar – responsible for ensuring premarital blood screening of spouses for both Thalassaemia and Hepatitis C.
According to senior K-P health officials, their department was ready to offer free testing and counselling facilities for spouses. However, the major stumbling block was the Nikkah registrar, the only official entitled to deal with the issue, has yet to provide the requirements and follow directions clearly listed in the law.
Moreover, not even a single government department has shown any interest in fully implementing the law.
The health department, officials said, has suggested that the K-P Chief Secretary Azam Khan call a meeting of the law, auqaf, social welfare and health departments to devise a plan for implementing the legislation.
The law makes it clear that the Nikkah registrar will obtain the blood screening reports for both the diseases. Moreover, the result (whatever it may be) must have no effect on marriage being solemnized.
Further, the law requires the Nikkah registrar to maintain the blood reports for at least two years after signing off on the marriage contract.
Should the Nikkah registrar fail to solemnise a marriage in contravention of the law, their licence can be cancelled. If someone other than a Nikkah Registrar solemnises marriage, they shall be fined Rs10,000.
However, since the law only deals with the Nikkah registrar and has to be coupled with several other functions such as blood testing, counselling, and social services, the law does not have any specific ‘owner’ who is responsible for following up and ensuring that the provisions are adhered to.
Thalassaemia is considered to be one of the most common genetic disorders in the country with a gene prevalence rate of six per cent in the general population – or six out of every 100 people carry the mutant gene.
Over 5,000 children affected by the mutant are born every year, or around 14 every day, officials said. They added that these children require regular monthly blood transfusions and chelation therapy to withdraw the excess iron in their bodies.
These children lay a heavy economic burden on their treatment with each affected child requiring an estimated Rs180,000 for treatment every year. Moreover, bone marrow transplants, the only permanent treatment for Thalassemia currently available, costs more than Rs2million.
With around 4,000 major Thalassemia cases seeking treatment across K-P, the disease is considered a major public health problem.
Officials blame the socio-cultural tradition of inter-family marriages in K-P for the widespread prevalence of the Thalassaemia gene in the population.
Published in The Express Tribune, October 1st, 2017.