Start Valuing Life
Data lansarii:October 01, 2012
In 2012, in Romania, young people suffering from hemophilia have bled to death. This shocking reality was what generated the “Start Valuing Life” project.
Hemophilia is a genetic disease, manifested through a coagulation factor deficiency. For lack of prophylactic treatment, these people suffer spontaneous hemorrhages that can endanger their life and destroy their joints, so they end up in wheelchairs, bedridden or bleeding to death.
If the Ministry of Health were to ensure prophylactic treatment until the age of 18, these people would lead normal lives, just like hemophiliacs in other countries. At present, Romania finances the prophylactic treatment of the disease until 18 years of age.
Through this project, we set out to convince the authorities to supply prophylactic treatment to young people diagnosed with hemophilia up to the age of 18 and home treatment (required in special circumstances, accidents, surgical and dental procedures, etc.) to those over 18.
These are our actions so far: meeting with Eugen Nicolaescu, the Minister of Health and Victor Ponta, the Prime Minister, submitting reports to the Ministry of Health and to the Government, having over 50,000 people sign a petition to support hemophiliacs.
As a result of these actions and the efforts of the Romanian Hemophilia Association, the Minister of Health has taken measures, as stated by Oana Costan, manager of the Curative Program Authority within the National Health Insurance Fund.
In 2014, the national program for treating hemophilia and thalassaemia was restructured for the first time according to the needs of patients and the recommendations of the specialists. Within this context, we can say that the budget for the national hemophilia and thalassaemia national project has increased over 81%, from 31,548,081 lei to 56,765,000 lei. Also for the first time, over 160 people under 18 who have been diagnosed with hemophilia will receive prophylactic treatment worth 90,000 lei per patient per year.
Although the measures announced seem to solve the hemophiliacs’ problem, the truth is that the allotted budget only ensures a coagulation factor quantity per capita (the universal measuring unit) of 1 unit, which is insufficient for ensuring prophylactic and special treatment (in case of a hemorrhagic accident). There are also many differences between the patients that live close to large universitary centers and those who live in the province, in faraway towns, and who do not benefit from the same treatment conditions.
The project is still an issue to be considered, and we will continue our efforts with the Ministry of Health in order to ensure the budget needed for a coagulation factor quantity of 3 units per capita, according to the recommendations of the World Health Organization.
Within this project, in partnership with the Cristian Serban Foundation and with the support of the Acasa TV network, we also organized a text message campaign, between the months of January and March of 2013, raising a total amount of 34,000 Euro. This money helped the Cristian Serban Foundation to replace the equipment destroyed in the fire that took place in May 2012 at the “Cristian Serban” Evaluation and Recovery Medical Center.