CENTRAL EASTERN EUROPEAN PATIENT ALLIANCE OF HEMATOLOGY

Начало News CEEPAH annual recap

CEEPAH annual recap

CEEPAH started in 2016, and continued in 2017, a research for mapping the availability of treatments for rare hematology diseases in Central and Eastern Europe.

Here are brief results:

Macedonia (FYROM)

Thalassaemia: Government provided treatment of blood transfusions and chelation therapy with oral chelators. There are gaps in the supply of chelators due to public procurements and procedures. Approximately 40 patients.
University Clinic of children diseases - Prof. Kata Martinova is in charge; for contacts: kata.martinova@ukdetskibolesti.mk, kata_martinova@yahoo.com; telephone: + 389 2 3147 473
University Clinic of Hematology - Address: Mother Teresa 17, Skopje, 1000, in charge: Prof. Aleksandar Stojanovic
CML: Government provides generics of Imatinib for treatment of CML as first-line treatment. There are hopes and regularly requests for a second line of treatment with innovative drugs. Approximately 120 patients.
University Clinic of Hematology – Address: Mother Teresa 17, Skopje, 1000; in charge: Prof. Aleksandar Stojanovic
Hemophilia and bleeding disorders: Government provides part of the needed inhibitors, in an insufficient quote. One Comprehensive Haemophilia Treatment Centre (HTC) was created in the country, at the National Institute of Transfusion Medicine, represented and led by Dr. Violeta Dejanova-Ilijevska. Approximately 150 patients.
Main treatment center: National Institute of Transfusion Medicine, Skopje, 17 Maika Tereza; tel. 00389(0)23226923, e-mail: rztskopje@gmail.com, led by Dr. Violeta Dejanova-Ilijevska
MDS and Myelofibrosis: Poor treatment, mostly with blood transfusions. The Department of Hematology at Acibadem Sistina Hospital (private hospital) offers diagnosis and treatment of hematological diseases in outpatient conditions and daily hospital. Acibadem Sistina Hospital, Skupi 5a str., Skopje 1000, Macedonia (FYROM); Telephone: +389 2 3099 500, www.acibademsistina.mk

Albania

Most treatments for hematology diseases in Albania are concentrated in University and Hospital Centre “Mother Teresa” in Tirana, Rruga e Dibrës 372, Tirana 1000, Albania; and in Hematology Department at Vlora Regional Hospital, city Vlora, Albania.
Thalassaemia: Government provided treatment of blood transfusions and chelation therapy with all chelators. No shortage of medicines. A serious shortage of blood supplies is present. Poor treatment of the second complication the due to the main disease. Approximately 800 patients.
CML: Government provides original drugs for the treatment of CML, in sufficient quantity. Approximately 300 patients.
Hemophilia and bleeding disorders: Government provides part of the needed inhibitors, in an insufficient quote. Poliklinika Specialiteteve Rajoni N1, Tirana, +355 422 5417 , Dr. Keti Pojani leads the Hemophilia center of care in Tirana. Approximately 220 patients.
MDS and Myelofibrosis: Poor treatment, mostly with blood transfusions. Some patients are transplanted.

Romania

Thalassaemia: Government provided treatment of blood transfusions and chelation therapy with one oral chelator, in low doses. Low blood supplies, no MRI T2* scans available in the country.Approximately 500 patients. Treatment is concentrated in Bucharest, Institutul National de Hematologie Transfuzionala Bucuresti Str. Constantin Caracas nr. 2-8, Sector 1, Bucuresti, Romania
CML: Government provides generic drugs for the treatment of CML, in sufficient quantity. Second line treatments are with innovative, original medicines. Approximately 430 patients. 
MDS and Myelofibrosis: Poor treatment, mostly with blood transfusions. Some patients are transplanted. Treatment center: Fundeni Clinical Institute Calea București 258, Bucharest, Romania, Tel: +40 21 275 0500 
Hemophilia and bleeding disorders: Government provides all type of the needed inhibitors but in an insufficient quantity. Approximately 350 patients. Treatment options: Institutul National de Hematologie Transfuzionala Bucuresti, Dr. Luminita Rusen, +40 021 212 8904; Romanian Haemophilia Comprehensive Care Centre, Bucharest, Dr. Daniel Coriu, Tel: +40 021 318 0423; Coltea Clinical Hospital, Bulevardul Ion C. Brătianu 1, București, Romania, Dr. Anca Roxana Lupu http://www.coltea.ro/

Serbia

CML: Government provides generic drugs for treatment of CML, in sufficient quantity. Second line treatments are with innovative, original medicines in not enough quantity. Approximately 180 patients. Clinic of Hematology, Clinical Center of Serbia, University of Belgrade, in charge: Prof. Andrija Bogdanovic,
Thalassaemia: Not found a group of patients. Most patients have immigrated or been transplanted in Italy. Approximately 5 patients.
Hemophilia: Government provides all type of the needed inhibitors, but in an insufficient quantity. Around 500 persons with hemophilia currently live in Serbia. Fourteen doctors who are directly involved in treating hemophilia founded the Serbian Hemophilia Care Doctors’ Group (SHCDG) in November 2010, with the main objective to ensure adequate medical treatment for persons affected by hemophilia in Serbia, enabling them to lead normal lives. The National Health Insurance Fund has approved controlled home self-administration of clotting factor concentrates. Home self-administration may be prescribed by doctors-hematologists and pediatricians that treat hemophilia if they are employed in one of the following institutions: Clinical Center Niš, Child and Youth Health Care Institute of Vojvodina in Novi Sad, Clinical Center of Vojvodina in Novi Sad, University Children’s Hospital in Belgrade, Mother and Child Healthcare Institute „Dr Vukan Čupić“ in Belgrade, Clinical Center of Serbia in Belgrade and Clinical Center Kragujevac.  Approximately 250 patients.
MDS and Myelofibrosis: Poor treatment, mostly with blood transfusions. Some patients are transplanted.

Turkey

The healthcare in Turkey is decentralized, due to the big size of the country. Rare blood diseases are treated in specialized centers or university hospitals. 
Thalassaemia: Government provided treatment of blood transfusions and chelation therapy with ALL chelators, with adequate doses. MRI T2* scans available in the country, at 4 locations. Very good level of healthcare for main disease and secondary complications. Approximately 5000 patients.
Hemophilia: Government provides all type of the needed inhibitors, in a sufficient quantity. Very good level of care for main disease and secondary complications. Approximately 1500 patients.
CML: Government provides generic drugs and original ones for treatment of CML, in enough quantity. Approximately 1000 patients. Transplantations are also provided as curative medicine.
MDS and Myelofibrosis: Regular treatment is provided, with blood transfusions and innovative drugs. Some patients are transplanted. Approximately 2000 patients.
Due to migration crisis in Syria and Iraq, there is a huge amount of refugees, whose treatment is provided by the Turkish government.