A patient organization is suing the Ministry of Health for age discrimination against patients with severe epilepsy. This was announced by Veska Sabeva, president of the Association of Parents of Children with Epilepsy (ARDE) on the occasion of World Epilepsy Day, which is celebrated worldwide every second Monday of February.
“We have prepared a letter to the Health Committee of the National Assembly, in which we will submit proposals for amendments to Art. 266 of the Law on Medicines in Human Medicine, concerning the possibilities of treatment with medicines that are absent from the Bulgarian positive reimbursement list, but have a permit for use in the European Economic Area. We insist that the Health Insurance Fund also pay them for people over 18 years of age. In our opinion, non-payment by the Treasury is age discrimination. That is why, on February 13, we will file a lawsuit against the Ministry of Health in the Sofia City Court for discrimination based on the age of patients with severe epilepsy. We will sue the Ministry of Health, not the Health Fund, since the Ministry determines the health policies in the country”Sabeva said.
It also became clear that the Bulgarian pharmacy market is missing 12 drugs for epilepsy, including first aid. That is why patients buy them from abroad. However, the problem is that the Bulgarian prescriptions are not valid in the respective countries and people are forced to use the local health system in order for an honest doctor to issue a prescription. On this occasion, ARDE wrote a letter to the European Commissioner for Health, Stella Kyriakidou, in which they propose to create a standard prescription form that would be valid in all countries of the European Union.
The MEP Tsvetelina Penkova explained that the Covid pandemic set a precedent to start conducting pan-European policies in the field of health care. “I hope that along with the policies for the prevention of cardiovascular diseases, we will also help solve the problems of people with epilepsy, since we are 35 MEPs who are ambassadors for people with epilepsy in the EP. We still owe it to people with epilepsy and we need to do much more to integrate them into society and find a place in the labor market.”stated Mrs. Penkova and promised to deliver the ARDE letter to European Commissioner Kyriakidou.
Pediatric neurologist Prof. Dr. Ivan Litvinenko explained that epilepsy occurs three times more often in childhood and that its onset in over 60% of cases is under the age of 16. “Most severe epileptic syndromes or epileptic encephalopathies occur in early childhood, and they worry us the most. Fortunately for them, in recent years we have new drugs, through which even if we do not achieve complete copying of attacks, we have a significant reduction of attacks and the number of drugs that a patient takes daily decreases, and the side effects also decrease. This gives a relatively good quality of life to these children. However, we have a problem with access to cheaper medicines. We have been fighting for years to provide rectal diazepam, which is indispensable for febrile seizures.”Prof. Litvinenko commented.
Symbolically, on Monday, iconic public buildings in various cities of Bulgaria were illuminated in purple – National Palace of Culture in Sofia, the Pantheon of the Revivalists in Ruse, the bridge in Burgas, the houses of culture in Plovdiv and Kardzhali, the Chamber Opera in Blagoevgrad. Under the motto “Purple lights for greater visibility” at 18:30 at Bulgaria Square in front of the NDK in Sofia, members of the Association of Parents of Children with Epilepsy, chairwoman Veska Sabeva, representatives of the institutions and friends gathered to welcome the lighting of the building in purple.
This year’s World Epilepsy Day is under the theme “Together for Support and Awareness”. That is why the Association of Parents of Children with Epilepsy held an open day at the Day Center for Children and Persons with Disabilities “Innumerable Miracles” at 212E Slivnitsa Blvd.
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