Over 70 per cent of the 242 haemophilia patients recently screened by the provincial health authorities in Karachi were found to be infected with hepatitis C, officials of the Communicable Disease Control (CDC) department of the Sindh health department told The News on Sunday on World Haemophilia Day 2022.
“We have screened 242 haemophilia patients in Karachi during the recent days and of them, over 70 per cent or 170 patients were found to be infected with hepatitis C virus. At least four of them were also found to be infected with HIV,” an official of the CDC Sindh said.
World Hemophilia Day is observed worldwide on April 17. According to the World Federation of Heamophilia, the theme of World Haemophilia Day 2022 was ‘Access for All: Partnership. Policy. Progress. Engaging your government, integrating inherited bleeding disorders into national policy’.
According to experts, haemophilia is a rare and serious X-chromosome-linked congenital bleeding disorder that affects the blood’s ability to clot, meaning that people with haemophilia bleed for a longer time than normal.
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It is estimated that about 1 in 10,000 people are affected by haemophilia, with 450,000 people living with the disease worldwide. It is estimated that around 24,000 people are living with haemophilia in Pakistan.
CDC officials said the screening of the haemophilia patients in Karachi had been carried out through rapid diagnostic kits and now PCR tests would be conducted for confirmation. They added that they were also planning to screen haemophilia patients in other cities of the province, including Mirpurkhas, in collaboration with the Haemophilia Welfare Society Karachi and Sindh Blood Transfusion Authority (SBTA).
Raheel Ahmed, chief executive officer of the Haemophilia Welfare Society Karachi, told The News that as state-of-the-art treatment of haemophilia was not available in Pakistan, its treatment was carried out through blood by-products where plasma of healthy patients was given to haemophilia patients.
He explained that this method of treatment had become obsolete in the developed countries. “As blood screening standards are very poor in the country, often plasma of people infected with viral hepatitis and HIV is transfused to haemophilia patients, which makes the lives of these patients more hard and miserable,” he said and added that viral infections acquired through infected blood were the leading cause of deaths among the haemophilia patients.
Ahmed, who is himself a haemophilia patient, claimed that the treatment of haemophilia through injectable factor XIII and other factors that are given regularly to patients, cost around three hundred thousand in Pakistan. He said that most of the time, factors or injections for haemophilia treatment were not available in the country.
“There are around 24,000 haemophilia patients in Pakistan, of whom approximately 9,400 are in Sindh alone. There are around 900 haemophilia patients registered with us, who need treatment with factor XIII and other factors,” he said as he urged the Drug Regulatory Authority of Pakistan and other authorities to make the modern treatment of haemophilia available in the country.
According to reputed science journal Lancet Haemophilia, haemophilia A is one of the most common inherited bleeding disorders with a poor life expectancy in Pakistan. The World Federation of Hemophilia (WFH) reported that 195,263 patients from 115 countries were diagnosed with haemophilia in 2019, of whom 2,233 patients belonged to Pakistan.
The actual number of people suffering from the disease, however, remains unknown and could be very high due to the high level of consanguinity, scarcity of funds for diagnostic facilities and poor awareness about the disease.
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