Vladimir's Story: We have had to fight many battles to get treatment

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Vladimir Tomov is Chairman of the National Gaucher Association of Bulgaria. His 14 year old daughter Radoslava, has Gaucher disease. Radoslava is very pretty but her pale complexion and enlarged stomach, which she carefully hides behind loose clothing, gives testimony to her need for enzyme replacement therapy.

Radoslava was diagnosed when she was five years old, explained Vladimir Tomov, Chairman of the National Gaucher Association of Bulgaria, through an interpreter.

'She bled easily and we took her to the doctor for tests. First we were told it might be cancer but when we were transferred to an oncologist (cancer expert), he discovered she has Gaucher disease. We went to see Dr Brigitta Radeva at the University Children's Hospital and she told us that there was a treatment.

'Two years later Radoslava began infusions of Ceredase but this was stopped after 12 months because there was no money to pay for the treatment. She started to deteriorate.

'Radoslava began infusions again in 1997 for six months but this was again stopped due to lack of funds. Although she improved during this period, she soon began to get worse after the treatment stopped.

'We have had to fight many battles to get treatment. First the Chief Consultant at the Ministry of Health said the treatment was not effective but we had evidence that it was.

'For nearly six years we have argued and protested. Then there was a change in the government and a television documentary was made about the plight of three of the children with Gaucher disease. Many viewers were appalled that the children were not being helped and this was a major breakthrough in helping the children.

'The families created the Gaucher Association in February 2000 and this gave us more power. Finally a symposium was held which presented evidence of the effectiveness of the drug.

'Three months later we obtained the necessary papers from Parliament and then followed permission from the Ministry of Health. Cerezyme was registered in December 2000 and shortly after that, the first batches of the drug were delivered.

'I think I must have visited the Ministry of Health and the Government nearly 1,000 times to campaign for the drug to be made available for these five children.

'Unfortunately there remain three adults untreated. We will endeavour to help them. However our fight might not be over yet as we must re-apply for funding of the drug every year.'

Gaucher Disease in Bulgaria
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Source: Gauchers News September 2001.
© Copyright Gauchers Association 2001