The community wins together – essential aspects of hemophilia in Romania and Europe
The community wins together – Essential aspects about hemophilia in Romania and Europe was the title of the online debate organized by the Romanian Hemophilia Association on the occasion of Europe Day.
Every year, on Europe Day (May 9), we celebrate peace and unity in Europe. Many European countries enjoy optimal medical care for people with hemophilia, but unfortunately there are still significant gaps, as in the case of Romania. Although we have reached a factor level of just over 3 IU / capita, which is a success for all of us, we can not yet speak of a unitary healthcare provided throughout the country and health policies need to be improved.
We had the opportunity and the opportuneness for an online dialogue, both with the institutional environment such as the European Parliament represented by Mr. Cristian Bușoi , the European Hemophilia Consortium in the person of Mr. Declan Noone as president, representatives of other hemophilia associations from Europe and with the academic environment and expertise on the field of hemophilia in the person of Prof. Dr. Margit Șerban.
We aimed for this meeting to provide us with an important landmark of collaboration between important actors in the field of health policies on hemophilia and highlighting examples of good practice that can be transposed in our country such as: The importance of the National Register for People with Hemophilia; Home treatment, its provision and the patient’s circuit from home to prescription; The doctor-patient collaboration, underlines Daniel Andrei, the president of the Romanian Hemophilia Association.
But they cannot be declarative or only partial, they must be translated into modern, increasingly effective policies and mechanisms of the authorities and the association that serve the interests of patients with hemophilia and other bleeding disorders so as to respond to current difficulties and future challenges.
The Romanian Hemophilia Association, the only organization in Romania that is a member of the European Consortium and the International Hemophilia Federation, is constantly working with these organizations to create new premises for obtaining results such as countries that already have an advanced hemophilia program.
Since 1992, the Romanian Hemophilia Association has sought to continuously reform health policies regarding hemophilia and to find solutions for the medical care of members of our community. With the integration of the member of the European Hemophilia Consortium for the voluntary pooling of human resources, a mechanism has been created for a better quality of life for members of the community of people with hemophilia in our country. But they cannot be declarative and only partial, they must be translated into modern, increasingly effective policies and mechanisms of the authorities and the association that serve the interest of patients with hemophilia so as to respond to current and future difficulties, says Prof. Margit Serban.
Today, the European Parliament has a significant and serious agenda regarding the health of European citizens and the mobilization is very large through the substantial sums granted to the different health programs. Investments are made in health, funds are provided for patients and hospitals and these were obtained through excellent collaboration with Stella Kyriakidou, European Commissioner for Health and Food Safety since 2019. Particular attention is paid to stocks and pharmaceutical strategy, said MEP Cristian Busoi.
The President of the European Hemophilia Consortium, Declan Noone, underlined the strategic importance of organizing integrated centers dedicated to hemophilia, the need for the availability of new treatments, the importance of home treatment and the need for applicability throughout the country. He also noted the successful collaboration of the organization he leads with the Romanian Hemophilia Association and relevant to the projects carried out at the level of the community of people with hemophilia in our country.
In Ireland, the percentage of people with haemophilia following prophylaxis has reached 95%, says Brian O’Mahony, Executive Director of the Irish Haemophilia Association. It continued by offering solid arguments in favor of the development of the Patient Register, the organization of the national tender for the purchase of drugs for hemophilia and the important role of a patient association both to increase the quality of care in the community of those with hemophilia and in this pandemic period. Brian O’Mahony also issued a warning about the challenges that may arise as a result of the global economic situation and the call to continue in a proactive manner with responsibility and commitment to finding solutions for people with hemophilia. not to suffer in the midst and after this global pandemic.
Miguel Crato, member of the executive committee of CEH and representative of the Hemophilia Association of Portugal reiterated the essential aspects of the association in collaboration with institutional decision makers both for the implementation of a patient registry and for auctions organized for the purchase of drugs. He underlined the important role that the European Hemophilia Consortium has in providing support, expertise, facilitation of good practices and concrete actions in increasing the quality of life and medical care provided to people with hemophilia.
Dejan Petrovoc, president of the Hemophilia Association of Serbia, presented in an open, sincere and clear way the example of the patient register in his country and the not very easy path of its creation, which led to a punctual analysis of the hemophilia situation in the country. and the transition, through the existing treatment centers, to the treatment provided at home, through one or two complex monitoring visits that take place annually for consultation and further prescription of personalized treatment.
Radu Gănescu, vice-president of the European Patient Forum and president of COPAC, was with us at this meeting. Radu, a friend of our community and colleague of suffering, presented the current situation through which a chronic patient transits and the importance of the collaboration of all actors for a better quality of life for each patient.
Whereas it has been 70 years since the Schuman Declaration, which initiated the European construction process and 30 years since the establishment of the European Hemophilia Consortium, a European organization with constant support and involvement in these years for the development of healthcare for hemophilia patients in Romania. , we want to bring again concrete results in the modern treatment we need.