The Lysosomal Storage Disorders Core committee and the panel of experts have requested President, Prime Minister, Governors, Chief Ministers and Health Ministers to support the patients of LSDs by providing the funds so that these victims can lead a normal life.
The awareness seminar on Lysosomal Storage Disorder (LSD) was held at Movenpick Hotel, Karachi by National Institute of Blood Diseases. Core Committee of LSD, District Pediatricians, Patients of the disease along with their parents also attended and had an opportunity of interacting with each other.
The panel of medical experts at the seminar demanded the Government to play a major role and set up facilities for screening, early and accurate diagnosis, appropriate enzyme therapy, and rehabilitation to making the patients' lives more comfortable. The Government should also ensure that enzyme therapies are made available for the treatment of affected children, so that they may lead as normal a life as possible, and contribute to the welfare of the country as responsible citizens.
Speaking at the occasion, country's leading Hematologist Professor Tahir Shamsi said: "Government must play a major role. Family members of LSD patients around the country are trying to reach out to the Government and other institutions for their support, so that their children get the required treatment and can lead a normal life.
In Pakistan major support has to come from the Government, which should set up facilities for screening, early and accurate diagnosis, appropriate enzyme therapy, and rehabilitation to making the patients' lives more comfortable. Centers should also be created for diagnosing these disorders during pregnancy so as to limit the number of affected infants being born with the disease.
The immediate and pressing need however is that the government should work out a scheme to provide free treatment for such patients, as the number of cases with such disorders is few and manageable." The panel of speakers urged the Government of Pakistan to take a step forward and support these patients by developing a policy for Lysosomal Storage Disorders.
They said, "The available treatment with the enzyme is beyond the affording power of many parents in Pakistan. People living with Lysosomal storage diseases often display unusual courage, tenacity, and grace in dealing with extraordinary challenges thrown up by their disease.
The panel of speakers suggested the Government of Pakistan to support these patients by creating a special fund for such patients. The panel members added: "Provision could be from existing funds like Bait Ul Maal and developing an orphan drug policy is also required."-PR
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