‘Allocate Rs200m annually for thalassaemia patients’

LAHORE

Punjab Thalassaemia Prevention Programme (PTPP) demands an annual allocation of Rs200 million to extend services of testing and treatment of Thalassaemia major, which is blowing out of proportions in the absence of any strategy to stop its birth rate.

“The Thalassaemia major not only inflicts pain and misery on the patient and its family, but also puts an enormous burden on the government’s kitty,” reflected Dr Shabnam Bashir, Programme Manager of PTPP, while holding a press conference here on Monday. The PTPP is currently being run on current allocation of Rs58 million per annum.

Dr Shabnam Bashir said there were approximately 60,000 patients of Thalassaemia major in Pakistan with the birth of another 7,000 children with this disease annually at a rate of 17 children per day. She informed that Thalassaemia is a hereditary disease, which is transmitted to the fetus through combination of defective genes of Thalassaemia carrier parents. Therefore, she said that there was a need to discourage marriages between Thalassaemia carriers – a phenomenon mainly identified in cases of cousin marriages. If both spouses are Thalassaemia carriers, then there are 25 percent chances of birth of normal children, 50 percent chances of Thalassaemia carriers or Thalassaemia minor (who otherwise remain normal throughout life) and 25 percent chances of birth of children with Thalassaemia major (who remain dependant on blood transfusion for whole life).

She encouraged the public to get themselves blood screened before marriages to prevent the disease among the newborn. “The control of Thalassaemia is only possible through prevention,” she said, adding that the children with Thalassaemia major needed blood transfusion once a month or twice a month in some cases for survival. “The consistent blood transfusion causes iron overload among the patients, she said, adding that the entire family had to go through this ordeal besides an expense of Rs300,000 per child per year. “It also puts a financial burden of Rs2.25 billion annually on the government,” she added.

She informed that another way of iron extraction was through medicines, which was too expensive for the poor, adding that side-effects of medicines caused many other complications among the patients.

She informed that PTPP had established labs in 24 districts in Punjab and would be able to set up its labs for tests in all districts by the end of this year. The Deputy Programme Manager Hussain Jafri informed that several Western and Islamic countries had been able to control the Thalassaemia through mandatory or voluntary screening before marriages.