PESHAWAR: End to Prevention of Thalassaemia Major Project has been put on the back burner and cases of the blood-borne disease have been increasing across the province, according to sources.
The health experts said that only in Lady Reading Hospital, more than 8,000 pints of blood had been transfused to the children affected by thalassaemia. They said that same was situation in other major hospitals and charity hospitals. They added that people ran from pillar to post to find blood for their ailing children.
Launched in 2005, the project was the first-ever initiative in the country to do away with the childhood ailments through raising public awareness to put brakes on the commonest genetic hemoglobin disorder but it was stopped by health department in 2012 putting an end to the long efforts to bring down the disease.
According to paediatricians, eight per cent population of KP vulnerable to the disease
The health department has included thalassaemia in the integrated programme along with four other diseases. However, no work is being done regarding eradication and prevention of the ailment or treatment of the affected children. The office of the project, headed by noted paediatrician Prof Abdul Hameed, was located at Khyber Medical College and had started research regarding the hereditary sickness.
The closure of the project has halted the efforts made regarding prevention, diagnosis and treatment of genetic hemoglobin disorder. According to Pakistan Paediatrics Association, eight per cent of the population of the province is carrier of thalassaemia minor and vulnerable to the disease.
Under the project, 5,000 were screened and plans were afoot to extend the process to the entire vulnerable population, especially to test the people with thalassaemia minor but its closure stopped all the efforts abruptly due to which the number of patients is increasing with each passing day.
Ironically, the government had announced to make the scheme a regular programme of health department but its closure surprised many people including its project director Prof Hameed, who worked voluntarily.
PPA provincial president Prof Afzal Khan, when contacted, said that the province had an estimated 30,000 thalassaemia patients, who required regular blood transfusion for survival.
He said that blood transfusion was not a permanent cure of the disease and the need of transfusion kept increasing with passing of time. He added that first the patients needed transfusion on quarterly basis then after every two months and then on monthly basis so it was difficult for them to arrange.
“PPA has been trying to put in place a mechanism for prevention of the disease but it requires government’s assistance and patronage,” said Prof Afzal.
He said that treatment of such patients was bone marrow transplantation, the cost of which was more than Rs2.5 million. He said that most of the parents of the affected children could not afford it.
“Not only had this but the patients also require Rs20, 000 for subsequent treatment after transplantation. We demand of the government to re-launch the same project from where it has been stopped to cope with the rising incidence of the blood disorders among the children,” said Prof Afzal.
Prof Abdul Hameed, when contacted, said that they had planned to take measures to cut down thalassaemia cases through counselling, research and awareness.
He said that Iran had completely eliminated the disease through prevention. He added that the project was significant as public sector hospital lacked facilities for thalassaemia patients and they relied on blood transfusion at private blood transfusion centres.
Published in Dawn, December 7th, 2018