Experts call for pre-marriage screening against lifelong disability disease.
ISLAMABAD -- Health experts, managers and philanthropists have called upon people for early screening before marriage and during pregnancy to prevent future generations from the spinal muscular atrophy (SMA) that causes lifelong disability.
They were speaking at a gathering organised to find ways to make the expensive treatment of the disease available to everyone in Pakistan and to end it by taking preventative measures.
The event 'Curing the Incurable' was organised by the Strive Trust, an organisation working to improve the quality of life of persons with disabilities (PWDs).
Dr Salman Kirmani, genetics specialist and associate professor at Aga Khan University, said no matter how hard the country tries it will be difficult to provide treatment to all.
'The best solution is to prevent future generations from this disease by early screening. Its
ratio in the west is one in 10,000 children but here it can be one in 6000 due to cousin marriages,' he said.
He suggested to couples who already have a child with SMA to undergo genetic screening between 11 to 12 weeks of pregnancy and end it if the tests were positive.
Dr Hasan Orooj, health expert, also said the disease could be hereditary so screening could be done before marriage.
'Patients must not suffer just because of expensive treatment that requires millions of dollars. Like other diseases the government can play its role and help make its treatment. It's a rare disease and the government can support few people suffering from it. I suggest forming a committee of esteemed people working on the disease to meet health ministry officials so that a proposal can be forwarded to Planning Commission to allocate funding for the treatment,' he said.
Prof Dr Shahzad Ali Khan, Vice Chancellor of Health Services Academy, said there was no culture of prenatal screening in Pakistan.
'Countries have...
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