Advocating for change is not an easy process. All World Federation of Hemophilia (WFH) national member organizations (NMOs) face a series of roadblocks when it comes to improving the care for people with bleeding disorders. However, with the right tools and a lot of persistence, changes can be made.
The Albanian Hemophilia Association (AHA) has faced many challenges in its campaign to improve care in the country but also many victories. To show how far they have come and to help develop their advocacy knowledge, the AHA recently participated in the Advocacy in Action workshop in Prague in December 2014.
The shifting political and economic climate in Albania’s recent history meant that getting the government to listen about the needs of a small community of people was never simple or next to impossible. However, with the stabilizing of the political and economic situation in the country, and with its recent application to join the European Union, advocacy efforts are now reaching decision makers so that progress for the hemophilia community has come a long way.
The AHA has set itself some ambitious goals. Their aim has been to increase the clotting factor concentrates (CFCs) usage by requesting the government to increase its purchasing budgets, establish a hemophilia treatment centre, develop a sustainable medical infrastructure to achieve a basic level of care throughout the country, and create a unified national patient registry.
To achieve these goals the AHA started by sitting down with the current Minister of Health, the Health Insurance Institute, and the Ministry of Education to inform them of the current situation people with hemophilia face and where the governments can step in to help. This was the biggest step for the AHA as the constant changing political climate of the country has meant that the department ministers change on a frequent basis.
“Compared to years ago, the situation has changed a lot, first of all we have a higher public awareness, better and more medical staff, less treatment with fresh frozen plasma and cyroprecipitate and much more treatment with factor,” said Megi Neziri, active member of AHA.
The AHA also faced a situation where it needed to provide people with the correct information and skill set to be able to help in the right areas. This meant setting up training workshops and information sessions for the doctors, nurses, lab technicians, and therapists that are involved in administering care to people with bleeding disorders. Despite this lack of knowledge in the health care community, the AHA has managed to bring in enough skilled professionals and has managed to open up a hemophilia treatment centre in the capital city Tirana.
The success that the AHA has shown in recent years is testament to what a group of dedicated individuals can achieve, with the right advocacy training, to move towards the end goal of improving access to proper treatment and care.
The Advocacy in Action Program is supported by exclusive funding from Baxter.