PESHAWAR: A law passed in 2009 to control thalassaemia and hepatitis C through pre-marriage testing is yet to be fully implemented to overcome both the preventable ailments in Khyber Pakhtunkhwa.

The provincial assembly had passed the Khyber Pakhtunkhwa (then North West Frontier Province) Health Preventive Act 2009, but it remained in limbo since then. Paediatricians are concerned over non-enforcement of the legislation and argue that the rise in thalassaemia cases in the province can be controlled if this law is implemented in letter and spirit.

The law, passed on the persuasion of Pakistan Paediatrics Association (PPA), is aimed to start pre-marriage screening of the would-be couples for thalassaemia and hepatitis initially on voluntary basis for which the government was supposed to launch an awareness campaign. However, there has been no such drive to scale up the public awareness that abiding by the law is meant to reduce the incidence of thalassaemia and hepatitis C.

The 2009 legislation is aimed at controlling thalassaemia, hepatitis C cases

A senior pediatrician told Dawn that Iran had eliminated the blood-borne disease by making the pre-marriage blood tests of would-be couples mandatory. He said that the same approach could be adopted here to do away with the diseases. He said that the government’s plan to initiate advocacy efforts and sensitise the marrying people to undergo screening was a complete failure as there was no progress to enforce the law. As a result, more and more thalassaemia cases are recorded in the province, he said.

An office-bearer of PPA recalled that it had been decided in a meeting with the chief secretary in 2017 that steps would be undertaken to identify the high-risk population in the province and voluntary testing started there through communication strategy, but the situation remained unchanged as thalassaemia cases kept increasing day by day.

Parents of an estimated 30,000 thalassaemia patients in the province are finding it hard to arrange blood transfusion for their children as the culture of donating blood was virtually nonexistent among the population. Thalassaemia-affected children die ultimately, but the only solution is screening prior to marriage to put brakes on the illness.

PPA members pointed out that the health department had planned to put in place measures to enforce Preventive Health Act, 2009 and Muslim Family Law Act, 1962 in a phase-wise manner as it wasn’t possible for the government to implement the laws immediately due to lack of social acceptability.

They said that there were social taboos due to which people couldn’t be forced into compulsory testing straightaway and therefore the plan was to start this voluntary exercise initially with the involvement of lawmakers, elected representatives and community organisations. They said that the government didn’t pilot the programme for voluntary testing in a few districts according to the plan.

According to the law, if a marriage is solemnised in contravention of the law the licence of such a Nikah registrar shall be cancelled and whoever, other than Nikah registrar, solemnises such marriage shall be fined Rs10, 000. The law also seeks to control hepatitis C which is transmitted through unsafe sex practices.

However, the province is yet to frame rules to implement the law and make the screening compulsory for would-be couples before tying the knot.

Published in Dawn, December 19th, 2018