Experts emphasise need for national policy on genetic disorders

Dr Sultan promises to revisit orphan drug policy

KARACHI: Sanofi Pakistan on Friday announced that a series of webinars was held to discuss and debate about the needs of patients of genetic disorders.

Special Assistant to PM on Health Dr Faisal Sultan, Punjab Health Minister Dr Yasmin Rashid, Professor Dr Huma A Cheema, and Lysosomal Storage Disorders Society President Atif Ejaz Qureshi participated in the webinars.

Giving an overview of the burden of rare genetic disorder in Pakistan, especially Lysosomal Storage Disorders (LSDs), Dr Huma said, “According to a conservative estimate, 50 per cent of children in Pakistan die of rare genetic disorders after malnutrition and diarrhea, but there is no policy to safeguard the lives of children living with rare genetic diseases.”

With the assistance of Sanofi Pakistan, the Children’s Hospital in Lahore has established a central registry to determine disease’s prevalence.

Commenting on the national health agenda, Dr Sultan candidly shared that there had been no discourse on rare diseases as governments used to give weightage to more common diseases with larger impacts.

In the context of Covid-19 and other more common conditions, he said, “It is inevitable that rare conditions end up going to the back burner. However, a child with a rare disease has the right to healthcare as much as a child with a more common disease.”

Dr Sultan termed formation of disease registry crucial to decision making on resource allocation, particularly in the devolved healthcare system of Pakistan, and also promised to revisit the Orphan Drugs Policy, 2017, acknowledging that the policy needs revision.

Dr Huma volunteered to share data with the government as the Children’s Hospital maintains data for LSDs in Pakistan and the database is now part of the international disease registry. “A federal policy would impact at every level, not leaving everything to the provincial governments,” said Dr Huma.

Qureshi pleaded that the government should not wait for numbers to rise to take action as rising numbers mean deaths of precious children. He proposed creation of an endowment fund and public-private partnerships as effective avenues to ensure provision and accessibility of costly treatments for rare genetic disorders. He also mentioned a recommendation from DRAP on custom duty exemption for LSD therapies, which unfortunately has been pending with Federal Board of Revenue for the past two years.

Khaled Esmat informed the participants that Sanofi is willing to make partnership with the government on bolstering diagnosis and treatment. He emphasised the need for the government, local and international health players, and patients’ associations to join forces and capitalise on each other’s strengths.

Punjab Health Minister Dr Yasmin revealed that Punjab is working on genetic disorders and taking a number of initiatives, including legislation. The Children’s Hospital is being upgraded into a university and the formation of an Institute on genetic disorders is on the cards that will work on diagnosis, early diagnosis and recommendations on policy initiatives.

On the issue of supporting these patients, Dr Yasmin said that despite the high cost of therapy and limited health budget, the government of Punjab is continuing to fund LSD patients. However, the key to addressing these conditions is by proactive intervention focusing on prenatal diagnosis.

In her concluding remarks, Dr Yasmin asked the organisers to propose a consortium of partners on genetic disorders that will drive the cause.

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