Despite a law being passed over a decade back to curb thalassemia, local culture has limited its implementation resulting in rising cases of the inherited blood disorder.
The law in question was introduced back in 2009 by the leading party of Khyber Pakhtunkhwa (K-P) at that time the Awami National Party (ANP). Under the law, thalassemia testing was made mandatory for married couples.
The marriage registrar was held responsible for ensuring that the thalassemia test was taken from the couple whilst signing the marriage certificate and doing so would result in a fine of Rs 10,000 and possible jail time for the registrar.
The law was passed in light of the province’s struggle with combating the disease. One such struggle that started in 2007 is of Sudais and his family who reside some 11 kilometers away from Peshawar in Budhai.
The boy was just 40- days old when he was rushed to the hospital with a high fever. After being treated for several days, the fever was gone but the doctors diagnosed him with thalassemia.
Read Khyber-Pakhtunkhwa’s fight against thalassemia
Now, 14-years later, Sudais requires blood two to three times a month for which he travels to a private transfusion center located in the city.
Sudais’s father, Imran, a police constable earning a measly sum of Rs 14,000 a month, while talking to The Express Tribune said, “Lord, don’t give anyone the sorrow of thalassemia. Every morning the first thing I see is my child unconscious due to low blood levels.”
Imran informed that after Sudais, his daughter also got thalassemia, which has brought their lives to a complete halt. “Thalassemia treatment is extremely painful and expensive. Medicines worth Rs 10,000 have to be bought along with blood, monthly, for each of my children,” a visibly tired and frustrated Imran said.
Almost on the verge of breaking down, Imran implored the government to help stop the life-long struggle that is thalassemia.
Dr Fakhar Zaman, a blood transfusion medicine expert in Peshawar, told The Express Tribune that a thalassemia test before marriage is very important for both men and women.
“If one of the two is normal and the other is a thalassemia carrier, it is highly likely that their children will have thalassemia,” he informed. Zaman, who has been treating and caring for children with thalassemia at a private thalassemia center in Peshawar for the past 15 years, said, “usually, the treatment of children with thalassemia is only blood transfusion, but now modern treatments like bone marrow transplant are also being done.”
However, as per Zaman, a bone marrow was extremely costly and was currently not possible in any government hospital of K-P. “In Khyber Pakhtunkhwa, there are about 40,000 thalassemia major patients and this number is increasing every year, so please get tested before marriage as an unborn child’s whole life is at stake,” he added.
Read Early Detection: Thalassemia law to screen carriers
Since the law requiring a test of the disease before marriage has not yielded any results, the provincial government has focused its attention on finding alternative solutions.
Health Minister Taimur Saleem Jhagra, while talking to The Express Tribune, said that the matter was of utmost importance to the government and a health committee had been set up in this regard.
However, Rehana Ismail, a member of the provincial assembly from the opposition, alleged that the government was not doing anything about this health emergency.
“They need to realize that they are playing with people’s lives. There is only one government hospital in the whole city that has a thalassemia testing facility and it charges Rs 750 per patient. How can the poor afford this?” she asked.