CFW Newsletter - BULGARIA

Introduction

Bulgaria is a small (110,994 sq km) country in Eastern Europe on the Balkan Mountains, bordered in the east by the Black sea. Bulgarian residents enjoy the marvelous nature and the continental climate. The major cities are Plovdiv, Varna, Burgas and Sofia, the capital. Founded in the year 681, Bulgaria served as the major participant in the Balkan political life for seven centuries. Then, the Ottoman Empire ruled Bulgaria for nearly 500 years. In 1908, Bulgaria proclaimed its independence. After the World Wars, the former USSR influenced politics in Bulgaria until the late 1980’s. Finally, the National Assembly ratified a democratic constitution in 1991. This was the first step for Bulgaria to have access to countries behind the Iron Wall. Bulgaria plans to join the European Union in 2007. According to 2002 statistical figures, 7.6 million people call Bulgaria home. Bulgarians are very tolerant of the nationality, religion or race of the others. In many villages and towns, Christians, Muslims and Jews live door to door in peace and harmony. For instance, the center of Sofia holds a mosque, a synagogue, a catholic and an orthodox church. While the economic status of its residents might be low, Bulgarian’s are naturally friendly and talented. Additionally, as in all the other countries, Bulgaria faces some economical, political and crime problems. One such problem is health care and the recognition of CF as a disease.

“…170 registered CF patients…”

There are 170 registered CF patients in Bulgaria with only 30 patients over the age of 18 years of age. Patient ages range from 2 months to 35 years. The average life expectancy for a CF person in Bulgaria is about 15 years.

The Bulgarian CF Clinic
In June 1990 a group of doctors, parents and patients gathered and founded the Bulgarian CF Association. Today, medical Universities in Sofia, Pleven, Plovdiv and Varna provide specialized CF consulting rooms and follow-up care to CF patients. Thus, CF patients requiring hospitalized care seek treatment at one of the four university hospitals. Yet, while over half of the patients are treated in Sofia, patients are assigned a university care center closest to their home.

Medical Treatment in Bulgaria
Unfortunately CF is not yet registered as a disease in the country of Bulgaria and is not part of the National Health Security Institute for reimbursement of medication. The lack of governmental support causes a challenging financial obstacle for patient families. The Bulgarian CF Association lobbied free enzymes (Panzytrat® or Creon®) and Pulmozyme® for the patients. However, patients are required to pay full price for all other medications administered during the ambulatory treatment-plan.

“… frustrated by the lack of some medicines…”

The doctor teams are well grounded in the therapeutically schemes practiced in the European CF centers, but their application is frustrated by the lack of some medicines—such as suitable intravenous and inhalatory antibiotics. In fact, there are currently no inhalatory antibiotics in Bulgaria. Unfortunately, the low social status of the most CF families prevents patients from being treated with the high cost medications available such as—inhalatory bronchodilatators, mucolitics, drugs for liver protection, polyvitamins and multivitamin complexes.

“…There are more than 30 types of mutations in the identified patients…”

The CF Association works in a close collaboration with the laboratory of molecular pathology in the Medical University Sofia where over 85% of the patients have received DNA-analysis. An additional 100 families used prenatal diagnose. The resources for these tests were supplied by the National programme for congenital anomalies and inherited diseases prophylaxis. There are more than 30 types of mutations identified in the patients with some of them described for the first time in Europe. One hundred percent our CF patients from the gypsy population have the F508 mutation. The frequency of heterozygotes is 1:33 and of the patients with CF is 1:3600

The Bulgarian CF Association
The CF Association receives support from the representative offices of Hoffmann-La Roche, Abbot and Solvey-Pharma for Bulgaria. The CF Association acknowledges and appreciates their assistance in arranging and leading a regional practical and scientific conference with pediatricians and general practitioners. With the help of Solvey-Pharma, a Practical guide for diagnosis, treatment and CF-patients was printed in 1997. Additionally a WHO guide was translated and published. Since 2003, a periodic newsletter “Better life with CF” that provides important information about treatments, medicines therapies and encouragement is published with charity funds raised by the editors (contact person Maia Hristozova - Maja.Hristozova@Lycos.com). The newsletter is distributed freely to all CF families in the country.
Currently the Bulgarian CF Association works actively for resolving some major problems:

1. Ensuring 100% free of charge therapy for the CF patients in ambulatory conditions
2. Providing adequate nutrition, especially for the infants
3. Instruction of the doctors, parents and patients for practicing the everyday kinesiotherapy
4. Promoting and preparing the patients for their professional and social adaptation
5. Seasonable information to the doctors, patients and parents for the newest therapy

The chairman of the association is Assistant Professor Ivo Kremensky (kremens@ns.medfac.acad.bg), the vice-chairman is Dr. Annie Kufardjieva, and the secretary is Assistant Professor Ivanka Galeva (igaleva@iterra.com). The Bulgarian CF Association appreciates advice, suggestions and assistance from other associations in an effort to satisfy the organizations goals. To contact the authors: gal_ps@yahoo.co.uk

Some curious facts about Bulgaria:
• Bulgarians nod their head for no, and shake it for yes, in the contrast with all the other countries.
• The music sent in the space with Voyager is a Bulgarian traditional song.
• The father of the computer, that changed the world, John Atanassov has a Bulgarian origin
• There is no Bulgaria’s flag because it was captured in battle in the more new Bulgarian History. In Bulgaria we have a flag that’s awarded with medal for bravery.
• Bulgaria was forced by its government to be at the German’s side in both WW). The Bulgarian army was the first that used air-forces (planes) in the battles in the whole world history
• Even though on the German side, Bulgaria saved the Bulgarian Jews from the concentration camps.
• Bulgaria was the only Balkan country that made the political change in the late 1980’s and early 1990’s peacefully, with no human victims (compared to Romania and former Yugoslavia).