Girl with rare blood disorder forced to beg for costly medicine

Parents of 10-year-old Bakhtawar suffering from chronic
immune thrombocytopenia purpura appeal for help

Instead of lying in a hospital bed and receiving medical care, 10-year old Bakhtawar Shafiq, who is suffering from a rare blood disorder, was forced to hold a protest demonstration in front of the Karachi Press Club (KPC) on Tuesday for a medicine that is vital for her survival but very costly and beyond the means of her poor parents.

“Doctors have diagnosed Bakhtawar with chronic immune thrombocytopenia purpura (ITP), which is a bleeding disorder in which the blood doesn’t clot as it should. They have prescribed her tablet Revolade 50mg, whose single tablet costs around Rs3,660,” said the girl’s mother after the demonstration.

People who have ITP often have purple bruises called purpura, experts explain, saying these bruises appear on the skin or mucous membranes (for example, in the mouth). Bleeding from small blood vessels under the skin causes purpura.

Carrying a banner inscribed with an appeal to the Sindh chief minister and the health minister to ensure treatment of her daughter, the mother said the cost of treatment of her daughter was beyond her financial means, so they approached the Civil Hospital Karachi, which provided her with one week’s medicine and then discharged her.

Bakhtgawar was taken to hematologist Dr Saqib Ansari at the National Institute of Blood Diseases (NIBD), who diagnosed her with chronic ITP and prescribed her the miracle drug Revolade 50mg per day for at least six months.

“Revolade is a new drug for the treatment of this condition and it works effectively in 30-40 percent of patients with ITP. The main course of ITP treatment involves injecting another drug on a weekly basis for several weeks, which is quite expensive as one injection costs around one and half lakh rupees,” he said.

Dr Ansari said that after prescribing Bakhtawar oral medicine that costs Rs4,000 per tablet, he had helped her parents to approach Pakistanb Bait-ul-Maal so that the girl could be provided with the required medicine for at least six months.

As the process to acquire medicine through Pakistan Bait-ul-Maal takes some time due to procedural requirements, the woman took her ill-fated daughter to the CHK and got her admitted to the cancer ward after learning that the required medicine was available at the hospital’s stores, but to her surprise, Bakhtawar was discharged after receiving five tablets of revolade in a week.

“They [CHK] administration said this medicine was not on the list of medicine supplied to them. They gave Bakhtawar five tablets in a week and then discharged her, saying they could not give her the medicine anymore.”

The woman appealed to CM Syed Murad Ali Shah, the health minister and other leaders of the ruling Pakistan People’s Party (PPP) to arrange treatment of her only child, saying her husband, a delivery man, could not afford such an expensive drug.

However, CHK Medical Superintendent Dr Zulfiqar Sial contradicts the claim of Bakhtawar’s mother, saying although Revolade 50mg was not present in their stores and on the list of medicines approved for patients, he purchased three weeks’ dose and provided it to the girl.

“But we can’t give her six months’ dose as we don’t have the resources to purchase such an expensive drug from the open market and give it to even a patient for such a long period,” he said, adding that expensive drugs worth thousands of rupees, purchased and supplied by the health department, were being given to patients on a daily basis.

What city needs 

Karachi needs a specialised institute for the treatment blood disorders, including thalassaemia, haemophilia, aplastic anemia and immune thrombocytopenia, as patients with these diseases in Sindh are moving from pillar to post for treatment, medicines surgery and other supportive care.

“There is an urgent need for an institute of blood diseases in Karachi, where treatment facilities for all the blood diseases should be available under one roof. At the moment, patients from entire Sindh, including Karachi, move from one private centre to other for management of thalassaemia, haemophilia, aplastic anemia, as well as various kinds of blood cancers, including leukaemia, lymphoma and myeloma,” said another hematologist, Dr Zeeshan Ansari.

According to the doctor, an institute of blood disorder is the need of the hour in Karachi where a modern blood bank, a state-of-the-art diagnostic lab, surgical facilities for bone marrow transplant and post operative care should be available under one roof so that precious lives of children could be saved.

“At the moment, patients with rare blood disorders have to approach a different diagnostic lab for diagnosis, go to a different blood bank for blood and visit a different hospital for treatment or surgery, which is extremely painful for patients and their attendants,” said Dr Ansari observed.