For many national hemophilia organizations, the path to improving hemophilia healthcare in their countries comes from the many contributions from both global and regional partners.
On a global level, the World Federation of Hemophilia (WFH) supports these patient organizations through a wide-range of programs helping to develop sustainable national care programs. In all our development activities, we build a winning coalition made up of national governmental bodies, health care professionals, patient group leaders, people with bleeding disorders, and our volunteers.
In October 2015, the WFH partnered with the European Haemophilia Consortium (EHC) and the European Association for Haemophilia and Allied Disorders (EAHAD) to organize a country visit to Estonia. For the Estonian Haemophilia Society (EHS), their primary objective while leveraging this visit was to gain insight and assistance in the development of a stronger hemophilia healthcare network for their country.
The creation of an accessible comprehensive care treatment centre, certified by the European Hemophilia Network (EUHANET), has been a priority for the EHS as this centre would ensure consistent preventative, on-demand and rehabilitative treatment for all Estonian patients. In addition, there would be a focus on conducting research and cooperating with centres in other countries. This centre would be also involved in setting up the national patient registry and training new specialists in hemophilia. A unified national registry is needed to ensure that adequate care is provided for patients outside major cities such as Tallinn and Tartu.
During this visit, a meeting was held with Jevgeni Ossinovski, the Estonian Minister of Health and Labour. The primary goal of this meeting was achieved as there was an agreement that a comprehensive care treatment centre would be established in 2016. In addition, a National Hemophilia Committee would be organized to include healthcare professional, patients, Health Insurance Fund representatives, along with the participation of the Ministry of Social Affairs and pharmaceutical companies. Lastly, coagulation factor procurement would begin through the newly-established regulation by the national Health Insurance Fund, thereby allowing for patients to receive treatment in the form of clotting factor concentrates from their local pharmacy, replacing the need to obtain the medication solely through the hospital.
Following the success of these advocacy efforts, the WFH, the EHC, and EAHAD will continue to actively support the efforts of Estonian patients, healthcare professionals and other stakeholder groups to improve the diagnosis of patients with bleeding disorders, while ensuring that adequate care is provided for patients outside major centres.