KARACHI: While the world celebrates Haemophilia Day today, the federal government is still far behind in addressing the issues surrounding bleeding disorders in the nation. According to information released on Tuesday, roughly 70% of patients go undiagnosed because of inadequate resources in public hospitals and the high cost of testing in private labs.
Haemophilia, which is frequently referred to as an orphan disease, had no official owner because most public sector tertiary care hospitals lacked or malfunctioned in their haematology departments, and the private sector’s diagnosis of the illness was out of the reach of the general public.
They said that as a result, about 70% of the patients went undiagnosed and developed the handicap.
Regarding the frequency of the disease and the expense of diagnosis, Raheel Ahmed of the Haemophilia Welfare Society Karachi (HWSK), the only organization in the nation founded and run by people with bleeding disorders, stated that there were an estimated 80,000 patients in Pakistan, of which 30,000 had hemophilia.
Depending on the severity of the blood condition, a patient’s monthly treatment costs might range from Rs300,000 to Rs1.7 million. The cost of a diagnosis can range from Rs25,000 to Rs150,000.
“Just 1,200 patients are enrolled.”
We calculate that the number of haemophilia patients in Sindh is approximately 10,000. Just 1,200 of them are registered, according to Mr. Ahmed of HWSK.
He claimed that the World Federation of Haemophilia and individual donations were helping the organization manage the 1,200 registered patients’ prescription costs.
He claims that the organization, which last year opened Pakistan’s first treatment facility for hemophiliac patients, registers about 200 new patients a year.
“An annual budget of Rs1.8 billion is required to provide all affected children with appropriate care. In addition, the government needs to address the severe lack of medications, he stated.
The treatment of fifty patients has not yet been approved by the Sindh government.
According to the sources, a summary of the treatment of fifty haemophilia patients who were registered with the HWSK has not yet been approved by the Sindh government.
They said that even after a year, the summary—which was officially approved by the health secretary and minister at the time—was unable to make it to the Chief Minister’s House for ultimate approval.
The province government will provide financial support for the treatment of 50 patients in the first stage and then progressively expand it to over 200 patients, aged one to twelve years, according to decisions made at talks with the health department last year, Mr. Ahmed said.
He continued by saying that just six patients’ medical costs were paid for by the government’s Rs. 24 million disbursement last year. “We have requested the release of funds at several forums, but to no effect,” he stated.
The US Centers for Disease Control and Prevention state that hemophilia is typically an inherited bleeding disorder characterized by improper blood clotting.
Both spontaneous bleeding and bleeding after surgery or injuries may result from this. Many proteins known as clotting factors are found in blood and can aid in halting bleeding. Low concentrations of either factor VIII or factor IX are seen in hemophiliacs.
The quantity of factors in a person’s blood determines the severity of their hemophilia. The likelihood of bleeding, which can result in major health issues, increases with decreasing factor levels.
