With the cooperation of World Hemophilia Federation and Hemophilia Foundation Pakistan, for the first time in Pakistan, the drafting of guidelines has been started to ensure the treatment of hemophilia patients according to international standards. In this regard, a National Hemophilia Treatment Guideline Conference was organized in a local hotel under Hemophilia Welfare Society Karachi in which medical experts from different cities of the country participated.
Medical experts said that with this guideline, doctors and other medical staff will be able to provide treatment and care to hemophilia patients according to international standards and hemophilia patients will also be able to live a normal life like healthy people. Speaking at the event, Raheel Ahmed, founder and CEO of Hemophilia Welfare Society Karachi, said that there is no government-level treatment facility for such patients in Pakistan and accordingly there is no hemophilia hospital, due to which the people affected by it and their families suffered here and there for treatment.
He said that there may be more than 25,000 hemophilia patients in Pakistan, out of which more than 3,500 have been registered in the Hemophilia Societies related to the Hemophilia Foundation Pakistan. These registered patients are getting state of the art treatment including 1030 registered patients registered with HWSK, while all other unregistered patients excepted these registered patients might be suffering from physical disabilities and death due to substandard screening through blood components or lack of immediate care.
Raheel also added that in Pakistan since the year 1980, various organizations had started working on hemophilia but unfortunately these organizations never worked on the prevention of this disease, its awareness & guidelines, which are the basic and important measures to manage Hemophilia.
Unfortunately, in Pakistan, there is no structure and there is any separate tertiary care hospital for this traumatic and life-threatening disease, except the Hemophilia Welfare Society daycare center in which state-of-the-art medical services are being offered to its registered Hemophilia patients.
But as a patient organization, we face financial difficulty extending these services on provincial and division levels. For this purpose, we also need land in the city of Karachi and the division levels and establish diagnosis faculty to register more number of patients through outreach & awareness programs.
The Hemophilia Societies we’re founded by Hemophilia patients and parents themselves, the World Federation of Hemophilia in order to provide better awareness and treatment of Hemophilia to all patients. Some of the famous hematologists and doctors of Pakistan also have also played an important role.
After the continuous struggle and efforts of the Hemophilia Welfare Society Karachi, that recently the Sindh Government through the ages Sindh blood transfusion authority has also started work with the Hemophilia Welfare Society for providing treatment and prevention.Other speakers included Director Sindh Blood Transfusion Authority Dr. Durre Naz, Dr. Munira Burhani, Dr. Tahira Zafar, Dr. Shehla Sohail, Dr. Shabneez Hussain, President and Advisor Hemophilia Foundation Pakistan Masood Farid, National Hemophilia Coordinator Pakistan Dr. Hassan Abbas Zaheer, Dr. Sarfraz Jafri, Secretary General Pakistan Medical Association Center Dr. Abdul Ghaffar Shoro, Dr. Lubna Zafar, Anisur Rehman, Syed Fakhr Alam, Hemophilia Foundation President Abbas Ali and Advisor Hasan Raza and others. On this occasion, the speakers appreciated the efforts of World Federation of Hemophilia for providing free injections to the patients in Pakistan on humanitarian basis. Medical experts agreed that modern hemophilia treatment facility should be established in Pakistan. In this regard, this guideline should also be approved soon and its implementation should start so that hemophilia patients can be treated according to the latest treatment protocols.During the ceremony, Dr. Durre Naz was also crowned by the Hemophilia Women’s Group in recognition of her services. Shields were also presented to other guests and speakers.