Hemophilia is a genetic disease in which the patient’s blood lacks blood-clotting proteins
By Insha Rizvi
World Hemophilia Day is observed every year on April 17. The aim of this day is to spread awareness about people with hemophilia and other genetic blood diseases around the world, highlight their difficulties, and encourage measures to provide better treatment and facilities.
This day is observed on the birthday of Frank Schnabel, the founder of the World Federation of Hemophilia (WFH), who dedicated his life to improving the lives of hemophilia patients. Frank Schnabel was an American-Canadian. He was born in 1926 and died in 1987. He is known as the founder of WFH in addition to being a business and social worker. Frank Schnabel himself suffered from hemophilia and he experienced the difficulties of this disease very closely in his personal life. He saw that hemophilia patients in different countries of the world do not have not only treatment but also humanitarian sympathy, awareness and protection. So in 1963, he founded the World Federation of Hemophilia (WFH), which aimed to connect hemophilia patients, spread awareness, improve access to better treatments, and provide services in developing countries.
What is hemophilia?
Hemophilia is a genetic disease in which the patient’s blood lacks blood-clotting proteins (clotting factors). As a result, even minor injuries or bruises cause excessive bleeding, and sometimes serious complications can occur in the form of internal bleeding. The disease is usually found in men. While women can have it but do not show symptoms, there are usually three types of hemophilia, A, B, and C, which are caused by the deficiency of different clotting factors.
What are the symptoms of hemophilia?
The main symptom of this disease is abnormal bleeding with even minor injuries. Apart from this, bluish discoloration of the skin, swelling and pain in the joints due to bleeding, and delayed healing of wounds are also among the symptoms. Frequent bleeding from the nose and gums is also a symptom of hemophilia.
Is hemophilia curable?
There is currently no permanent cure for hemophilia, but with the help of proper care and modern factor replacement therapy, patients can lead a normal life. Its treatment facilities are available in developed countries, while it is a big challenge in developing countries.
Importance of World Hemophilia Day and the role of the public
World Hemophilia Day is important in order to raise the voice for the rights of patients and improve access to its treatment worldwide. It highlights the importance of research and development of new treatments and health systems that should be strengthened by eliminating social prejudice. Every year there is a new theme for this day, which guides awareness campaigns and activities.
What role should the general public play in this regard is important. In this modern era, the first and easiest thing we can do is to participate in awareness campaigns on social media and highlight the importance of blood donation. If we are able to help financially, then we should join hands with local hospitals and institutions and play a role. In this difficult time, we must understand the problems of hemophilia patients and try to help them in every way.
Proportion of hemophilia patients in the world and Pakistan
According to the World Federation of Hemophilia 2023 report, one in every ten thousand men worldwide has hemophilia. About 1.25 million people in the world are affected by this disease. Of these, about four hundred thousand people are suffering from hemophilia A, and the rest are suffering from hemophilia B or other blood diseases. Only thirty to forty percent of patients are correctly diagnosed. In developed countries, seventy to eighty percent of patients are registered, while in developing countries this rate is less than ten to twenty percent.
There is no accurate registry of hemophilia patients in Pakistan. Depending on the population here, an estimated ten to fifteen thousand people may be affected by this disease. According to various NGOs and hospitals, only two to three thousand patients are registered. That is, about eighty percent of patients are undiagnosed or not registered.
What are the arrangements in Pakistan?
There are a few important institutions and organizations working in the field of hemophilia in Pakistan, although resources and facilities are still limited. In 1996, the Pakistan Hemophilia Patients Welfare Society (PHPWS) was established in Lahore, which helps hemophilia patients all over Pakistan. In addition, the Fatimid Foundation is also providing services in Karachi, Lahore, Islamabad, Peshawar and Quetta. The Hussaini Blood Bank and Indus Hospital in Karachi are also active in the field of hemophilia. These organizations and institutions are providing facilities like free factor therapy, provision of blood components and donations, patient counseling, free treatment, etc. But the facilities available in urban areas are very limited and facilities in rural areas are non-existent.
Role of the Pakistani government
The fact is that the role of the Pakistani government in the field of hemophilia patients has been limited and disorganized. Some steps have been taken, but they have not been complete, effective and consistent. On the positive side, the government has provided treatment in some government hospitals. Factor therapy and blood facilities are available to some extent for hemophilia patients in government teaching hospitals in major cities, such as Jinnah Hospital in Lahore, Khyber Teaching Hospital in Peshawar, Holy Family Hospital in Rawalpindi, etc. Hematology units have also been established in some hospitals. The government has relaxed taxes on the import of medicines and specific hemophilia factors. Moreover, the Pakistani government has sometimes partnered with international organizations such as the World Health Organization (WHO). The reason for the lack of momentum for these initiatives is that there is no permanent national policy or fund for hemophilia at the national level in Pakistan. There is also no accurate registry of people suffering from this disease at the government level. Moreover, patients in rural and remote areas are neither diagnosed nor treated. Only a few facilities are available in major cities, which are often inaccessible to patients. In addition, there are no public awareness programs, training programs for teachers or doctors at the government level, and no effective measures are seen for awareness campaigns.
Need for Action
The most important thing to improve the situation is the formulation of a National Hemophilia Policy. And after that, it is necessary to establish a national registry of patients. Along with the inclusion of free treatment and factor therapy in the health system by the government, it is also necessary to spread awareness through media campaigns and train health workers in this regard. Along with this, the problems of hemophilia can be controlled by strengthening the partnership of NGOs and government institutions.
World Hemophilia Day is not just a day, but an opportunity for us as a society to unite and pave the way for a better future for people affected by hemophilia. It is our shared responsibility to promote awareness, only then can we have a safe and healthy world.
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Insha Rizvi is student of bachelors at department of Mass Communication, University of Karachi
