Need stressed for policy on rare/genetic disorders

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Staff Reporter

Sanofi Pakistan announced that a series of Webinars were held to discuss and debate the unmet needs of patients of rare/genetic disorders.

Participants included Dr Faisal Sultan (Special Assistant to PM on Health), Dr. Yasmin Rashid (Punjab Health Minister), Prof Dr Huma A.

Cheema (Prof of Pediatric Gastroenterology-Hepatology, Genetic & Metabolic Diseases), Atif Ejaz Qureshi (President, Lysosomal Storage Disorders Society) & Khaled Esmat (Medical Head, Asia & Africa Zone, Sanofi
Genzyme).

Giving an overview of the burden of rare/ genetic disorder in Pakistan, specifically Lysosomal Storage Disorders (LSDs), Prof Cheema said: “According to a conservative estimate, 50% children in Pakistan die of rare genetic disorders (after malnutrition
& diarrhoea) – yet 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 (Lahore) has established a central registry to determine disease prevalence.

Commenting on the national health agenda, Dr. Sultan candidly shared that there had been no discourse on rare diseases, primarily because governments tend to give weightage to more common diseases with a larger impact.

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 of 2017, acknowledging that the archaic drug policy needed
revision.

Prof. Cheema 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 Prof. Cheema.

Atif Ejaz Qureshi (President, Lysosomal Storge Disorder Society) pleaded that the government should not wait for numbers to rise to take action – 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.

Khaled Esmat informed the panelists that Sanofi is willing to partner the government on bolstering diagnosis and treatment.

He emphasized the need for the government, local and international health players, and patients’ associations to join forces and
capitalize on each other’s strengths.

Punjab Health Minister Dr. Yasmin Rashid revealed that Punjab is working on genetic disorders and taking a number of initiatives including legislation.

The Children Hospital is being upgraded into a University and the formation of an Institute on
Genetic Disorders is on cards that will work on diagnosis, early diagnosis and recommendations on policy initiatives.

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