Today, April 17th, marks World Hemophilia Day, a day established by the World Federation of Hemophilia in 1989 to commemorate the birthday of its founder, Frank Schnabel.
The Syrian Future Movement views this day as a global humanitarian initiative to raise awareness about inherited bleeding disorders and to promote the values of social solidarity and equal access to life-saving medical care under the slogan “Access for All.”
On this day, the Syrian Future Movement affirms that the right of those with inherited bleeding disorders to live with dignity and health security is an integral part of our vision for a new Syria.
The values of social justice that we uphold compel us to stand with every Syrian citizen facing illness under these exceptional circumstances, emphasizing that building the nation begins with protecting the health and well-being of its citizens.
The Syrian Future Movement, based on technical data from the World Health Organization and the World Federation of Hemophilia, indicates that the treatment gap in areas of crisis and political transition has reached critical levels, with the majority of patients in Syria lacking sustainable access to clotting proteins (Factors VIII and IX).
We view these figures as a cry for help, necessitating that the hemophilia issue be placed at the forefront of the national health agenda.
The Syrian Future Movement believes that the Syrian transitional phase must be characterized by a forward-looking vision that transcends temporary, emergency solutions.
We also call for the establishment of a decentralized national health system that guarantees the provision of specialized hemophilia treatment centers in all Syrian governorates, and the integration of those affected into the economic and social fabric through legislation that protects their rights to education and employment.
The Syrian Future Movement explicitly requests that international partners and donors support the stability of pharmaceutical supply chains for blood diseases in Syria. We look forward to a future where Syrian hemophilia patients are not forced to choose between their pain and survival, but rather find a state that cares for them and institutions that support them.
Based on the principles of the Syrian Future Movement in building a state of citizenship, we believe that health security is the cornerstone of societal stability. Therefore, we recommend the following:
First, Legislative and Structural Policies:
- Work to include the “right to universal health coverage” as a binding constitutional provision, guaranteeing the state the provision of a minimum level of treatment for chronic and genetic diseases free of charge.
- Transform the management of the health sector from a restrictive centralized system to a “health regions” system, ensuring that specialized medications (such as clotting proteins) reach villages and rural areas with the same efficiency as their distribution in the capital.
Second, Implementation Measures (Health Recovery Fund):
- Launch a sovereign digital database that enumerates those suffering from rare and chronic diseases (including hemophilia) to ensure that resources are allocated based on actual need, not arbitrary estimates.
- Propose the establishment of a national fund financed by (specific taxes, international grants, and private sector partnerships) to secure the import of expensive medications, independent of fluctuations in the general budget.
Third, International Partnerships and Pharmaceutical Sovereignty:
- Activating direct cooperation protocols with the World Federation of Hemophilia and the World Health Organization to procure medicines at preferential prices and ensure the medical sector is exempt from any political interference or sanctions.
- Providing tax incentives to national companies that invest in manufacturing quality medicines and medical solutions to reduce total dependence on imports and achieve pharmaceutical sovereignty.
Fourth, Social Inclusion and Empowerment:
Enacting legislation that prohibits discrimination against hemophilia patients in educational institutions and the labor market, while providing a patient-friendly environment that guarantees their physical safety and invests in their intellectual capabilities.
As the Syrian Future Movement commemorates this World Day, it renews its commitment to ensuring that the health and political aspirations of the Syrian citizen remain the compass guiding our work towards a new, healthy Syria, strong with its people.
These recommendations represent a professional commitment from the Syrian Future Movement to the Syrian people, and we will strive to move from crisis management to system-building to ensure that Syria’s future is healthy, both physically and politically.
