‘Bill a toothless effort without enforcement’

Karachi
Legal and health experts, along with human rights activists, on Wednesday unequivocally criticised the provincial government for passing what they termed ‘a toothless bill’ for Thalassaemia prevention, underlining the fact that no steps had been taken to enforce the steps proposed by legislators.
At a seminar titled ‘Thalassaemia Prevention Bill 2014: How to Implement’, organised by the Omair Sana Foundation (OSF) at the Arts Council, various speakers highlighted the need for strict implementation of the bill’s proposals.
Calling for amendments in the bill, the experts said relevant Thalassaemia tests of couples before marriage must be made mandatory and demanded the government provide testing facilities in far flung areas of the province as well.
On the occasion, dignitaries and experts in attendance announced they would visit the OSF Centre at Gulshan-e-Iqbal on Friday afternoon to express solidarity with Thalassaemia patients and donate blood for children affected by the disease.
Justice (Retd) Wajihuddin Ahmed, the chief guest and key-note speaker at the seminar, said the bill lacked provisions related to punishment for those who refuse to check their Thalassaemia status before marriage.
He suggested that every recognised diagnostic lab in the country should be made to carry out Thalassaemia testing free of cost. “Bills and laws should be discussed in detail before promulgation; without any checks and balances, such legislative efforts can never deliver effective laws,” he said.
“I also propose that Thalassaemia status test should be conducted while issuing children’s birth certificates, as well as CNICs, so that people can know if they are carriers of this genetic disorder,” suggested Justice (Retd) Ahmed.
Commenting on criticism being levelled at PTI chief Imran Khan for not undergoing a Thalassaemia status test before his second marriage, he observed that neither Khan nor his wife needed the test as they have perfectly healthy children with their previous spouses.
Dr Tahir Sultan Shamsi, a renowned haematologist and director of the National Institute of Blood Diseases (NIBD), was pessimistic over the effect of making Thalassaemia status mandatory in a country where ‘a majority of hospitals, including prominent teaching hospitals, did not have Thalassaemia testing facilities’.
He was also sceptical over citizens’ honesty in such matters. “Our people are willing to forge health certificates and cheat to perform Umrah or Hajj. Even if we manage to make Thalassaemia tests a mandatory pre-marriage requirement, people will simply figure out means to acquire fake certificates,” said Dr Shamsi.
Karachi Press Club Secretary AH Khanzada opened with an expansive view over the matter, stating that the Almighty had provided treatments for every disease in this world and, for those that were untreatable, prevention had been prescribed as the only safeguard.
He opined that the entire society, including lawmakers and the government, should be held responsible for non-implementation of the bill and called for dedicated steps for its elimination.
Prominent human rights activist, Ansar Burney, said awareness was key to eliminate Thalassaemia from society. “People must be personally motivated for Thalassaemia status tests and should also take up regularly donating blood for affected children,” he said.
Burney also criticised the bill for its lack of punishment for offenders, adding that until its provisions were strictly implemented there could be no hope of betterment. He suggested that a day be fixed for weekly blood donation and announced he would be donating blood at the OSF Centre on Friday.
District Central Deputy Commissioner Dr Saifur Rehman said Thalassaemia was a disease that could be prevented without any costly measures but regretted that, in Pakistan, there were many people who refused to have their children vaccinated.
“There is something wrong with us as a society; we have become terribly insensitive. Diseases that have been eliminated from the rest of the world are still crippling our children and ruining their lives, and all we are doing is debate over the pros and cons of preventive measures,” he lamented.
Others including OSF Secretary Dr Saqib Ansari, Hamdard Medical College Principal Dr Furqan Ahmed, Mrs Kishwar Saleem, Tariq Khan and Muhammad Raza of Meezan Bank also spoke at the seminar. ­