What can we do to increase awareness about hemophilia?
Every year on April 17 -- World Hemophilia Day -- there is an opportunity to come together and raise awareness about hemophilia and other inherited bleeding disorders. This year, the theme of World Hemophilia Day is outreach and identification, and the tagline is: “Reaching out: The first step to care.”
The World Federation of Hemophilia (WFH) has made substantial progress in supporting the identification of new patients, but much is left to be done to bring proper care to all who live with bleeding disorders.
There are 1,748 hemophilia patients identified in Bangladesh.
However, as per the prevalence rate, there could be 11,000 hemophilia patients, and people with other inherited bleeding disorders in the country.
Hemophilia manifests as severe, spontaneous bleeding episodes, requiring blood products and ideally specialized factor concentrates within hours of onset of bleeds to minimize damage. Bleeds can be life or limb threatening.
Currently, many families have to travel with their affected child for many hours with painful and disabling acute bleeds to access care in cities (Dhaka or Chittagong).
The government is not purchasing clotting factor concentrate for the patients in the country. Offering adequate treatment and care to patients will help prevention of bleeding, long-term management of joint and muscle damage, management of complications from treatment including the management of inhibitors.
We kindly encourage the government to consider the following actions which will make a profound difference in the lives of people with hemophilia in the country.
First, outreach programs and improvement of laboratory diagnostic capacities are necessary to ensure that patients are identified and accurately diagnosed.
Second, the government should allocate a budget to purchase clotting factor concentrates (CFCs) for its patients. These life-saving medicines are safe and effective.
Third, raising public awareness on hemophilia and educating patients on their condition is an important issue. A strong patient organization can increase the identification and support of patients and families as well as build awareness and outreach.
Fourth, the government should consider incorporating a specific hemophilia care policy in the national health policy of Bangladesh. Given the unique needs of patients with rare bleeding disorders, codifying their care in national policy can help to ensure equal and appropriate care.
Fifth -- given that hemophilia is a rare inherited bleeding disorder, there is a general lack of awareness on the disease and its treatment methods among health care professionals. Therefore, hemophilia can be optimally managed only in specialized hemophilia treatment centres.
Finally -- developing a national hemophilia program and national treatment guidelines will serve as an important prerequisite for the improvement of health and the quality of life of patients in Bangladesh. These issues can be addressed in collaboration with key stakeholders, including the Health Ministry, health care professionals (leading medical experts), WHO, WFH, and the patient organization.
Sachi Satapathy works as Regional Manager, South Asia, and East Asia, World Federation of Hemophilia (WFH) and can be reached at [email protected]