Published On: April 18, 2019 12:30 AM NPT By: S Satapathy
The government should consider incorporating a specific hemophilia care policy in the national health policy of Nepal
World Hemophilia Day (marked on April 17) is a unique 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”. Patient outreach and identification is about finding and supporting individuals with hemophilia or other bleeding disorders—including von Willebrand disease—who have not yet been diagnosed, or whose health needs are not being met by healthcare services.
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. The World Federation of Hemophilia (WFH) is an international not-for-profit organization established in 1963, with a membership of patient organizations in 140 countries and official recognition by the World Health Organization (WHO) since 1969.
For the last 50 years, WFH has provided global leadership to improve and sustain care for people with inherited bleeding disorders, including hemophilia, von Willebrand disease, rare factor deficiencies and inherited platelet disorders no matter where they live.
There are 647 Hemophilia patients identified in Nepal. However, as per the prevalence rate, there could be 3000 hemophilia patients and people with other inherited bleeding disorders in the country. Presently, hemophilia patients from rural areas and small towns have to travel to the capital city of Kathmandu for diagnosis and care. The hospitals in Kathmandu offer treatment and care to people with hemophilia and other inherited bleeding disorders. 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, management of inhibitors. Thanks to the government of Nepal, one progress has been made in this field for the first time. Hemophilia has been categorized as a disability in Nepal according to the Persons with Disabilities Rights Act (2017).
We encourage government of Nepal to consider 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. There is a strong need to set up hemophilia treatment centers (HTCs) in all the regions, across the country.
Second, government can allocate budget to purchase clotting factor concentrates (CFCs) for its patients in the country. These life-saving medicines are safe and efficacious and are included on the World Health Organization’s list of Essential Medicines. Presently, the replacement therapies through clotting factor concentrates are available for Nepali patients through the WFH humanitarian aid donations.
Third, raising public awareness on hemophilia and educating patients on their condition is important to address this issue. Such programs can be very successfully implemented in collaboration with the patient association that can act as one of the main partners in offering patient education and other support services. A strong patient organization can increase 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 Nepal. Given the unique needs of patients with rare bleeding disorders, codifying their care in national policy can help to ensure equal and appropriate care across the country.
Fifth, given that hemophilia is a rare inherited bleeding disorder, there is in general lack of awareness on the disease and its treatment methods among healthcare professionals. Therefore, hemophilia can be optimally managed only in specialized hemophilia treatment centers, which represents a well-established standard in many countries around the world.
Finally, developing a national hemophilia program and national treatment guidelines will serve as an important prerequisite for the improvement of health and quality of life of patients in Nepal. These issues can be addressed in collaboration with key stakeholders including Health Ministry, healthcare professionals (leading medical experts), World Health Organization (WHO), WFH and the patient organization.
The author is a Regional Manager for South Asia and East Asia at World Federation of Hemophilia (WFH)
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