ISLAMABAD: The Drug Regulatory Authority of Pakistan (Drap) has not registered any medicine to treat haemophilia patients who rely on smuggled ‘factor VIII’ – a clotting protein – for treatment.

On World Haemophilia Day (WHD), a seminar was also arranged in the federal capital wherein the regulatory body was urged to register medicines to treat the chronic disease. April 17 is chosen as the WHD in memory of Frank Schnabel, who was born on this day in 1942 and dedicated his life to improving the lives of people affected by bleeding disorders.

According to the in charge of the blood bank at Pims, “Factor VIII is not registered with Drap so it becomes difficult to arrange it. It can be given after three months or even earlier depending on individual cases.”

Dr Farwa Sijjeel told Dawn that the disease was an inherited bleeding disorder in which the blood does not clot properly. “This can lead to spontaneous bleeding as well as bleeding following injuries or surgery,” she said, adding that the patients with the diseases lack ‘factor VIII’ protein in their blood.

People depend on smuggled drug, patients not covered under health card

“A woman can be a carrier of the haemophilia and transmit it to her offspring, but it appears only in male children. There are 13 clotting factors in the human body…haemophilia is due to the deficiency of factor VIII…once the bleeding starts, it cannot be stopped without the intervention of a medical expert and treatment with factor VIII,” she said, adding that amid a dearth of testing, the disease is usually diagnosed at the time of circumcision.

Dr Sijjeel said patients usually lived a normal life but they needed medication, including ‘Factor VIII’, which is used to stop bleeding. She also pointed towards the apathy at the government level toward this disease.

Dr Sijjeel said that Baitul Mal made a one-time payment of Rs600,000 to each patient for their treatment, which was insufficient as a single dose of this blood protein was priced at about Rs50,000.

She suggested that the disease should be covered under the health card. “Patients of haemophilia live a normal life but they need medication which should be provided as their basic right,” she said.

Separately, the first-ever stakeholder consultation on a national level was organised in Islamabad by the Speak Trust in collaboration with the Haemophilia Federation of Pakistan (HFP). The objective of the meeting was to initiate a national debate on the issues, challenges and inequities faced by the Haemophilia community in Pakistan.

The event was chaired by Ministry of National Health Services Deputy Director Dr Ambreen Nadeem and HFP President Ali Abbas Zaidi, who is a haemophilia patient as well.

Speaker Trust Founder Shahbaz Akbar Chaudhary welcomed the participants and outlined the aims and objectives of the consultative meeting and the plans to address and mitigate the challenges faced by haemophilia patients and families.

The HFP representatives highlighted in detail the various aspects of the disease and its challenges in the local context and provided recommendations and suggestions, especially in view of the 2023 theme – “Access for All: prevention of bleeds as the global standards of care”.

Prof Zaheer stressed the need to have a technical working group notified by the health ministry to work on the ‘National Policy on Genetic Blood Disorders’ followed by the development of the national strategic framework to successfully manage these disorders in Pakistan. In developed countries and even in some developing countries, patients with these genetic blood disorders are well-managed on prophylaxis (factor concentrates and other medicines) and have a normal life span with minimal morbidity and mortality rates. They are considered chronic disorder patients requiring multi-disciplinary care, he added.

During the interactive discussion session, the participants shared their insights and provided useful and workable solutions for improving the quality of life of patients affected with haemophilia and other bleeding disorders. They also urged Drap to register haemophilia medicines and also sought the establishment of dedicated haemophilia treatment and care centers to facilitate the patients.

The health ministry representative appreciated the efforts of the meeting organisers and promised to work for the welfare of the haemophilia patients.

Published in Dawn, April 18th, 2023