Alzheimer Bulgaria Association May 2012 Brussels 1Brussels, May 2012Association Alzheimer Bulgaria

About Alzheimer Bulgaria Association (ABA) ABA was established in 2003 through the joint efforts of families with sufferer and professionals. On 21 September 2003, for the occasion of the World Alzheimers Day, we organized our first press- conference. Our main topic for dispute was Why medicines for Alzheimer disease are not reimbursed in Bulgaria. We mark this date every year since then. ABA is a member of Alzheimer Europe Bulgarians Patients Confederation Health Protection 2Brussels, May 2012Association Alzheimer Bulgaria

What made us organize ourselves Situation in Bulgaria: dementia related cases Alzheimer cases Accelerating of aging process (National Demographic Statistics 2011 report 20% increase of population over 65 since 2000) No coordination between the countrys different systems - health care, social, municipalities No national health strategy No national plan for dementia 3Brussels, May 2012Association Alzheimer Bulgaria

The problems of families with a sufferer A study we conducted in 2010 shows: the care for a patient takes 15 hours per day on average only family members take care of sufferers in over 70% of the cases 85 % meet common financial difficulties 4Brussels, May 2012Association Alzheimer Bulgaria

Projects and results: Policy making As a result of ABAs contineous efforts drugs for the Alzeihmer desease were included in Bulgarias reimbursement system. ABA met every newly appointed Minister of Health (4 ministers in 3 years within one government mandate!) In 2009 ABA appealed before the Commission for Protection Against Discrimination. In 2011 the Supreme Administrative Court decided in favor of ABAs appeal that the Ministry of Healthcare should amend the Reimbursement Act. In 2012, after the Ministry of Healthcare failed to obey the courts decision, ABA apealed before Bulgarian Ombudsman. In 2012, the Ministry of Healthcare amended the Reimbursement Act the way it was stipulated by the Supreme Administrative Court. 5Brussels, May 2012Association Alzheimer Bulgaria

Projects and results: Direct support In 2009 ABA created Information and Consulting Center in Sofia (Bulgarian capital) – social worker, psychologist and legal adviser help families in their daily cares for sufferers In 2011 ABA opened a Daily Center in Sofia under (national) operational program Human Resource Development When the project ended the center had to be closed due to lack of sustainable funding by the Government 6Brussels, May 2012Association Alzheimer Bulgaria

Projects and results: Raised public awareness Through ABA organized a total of 12 thematic workshops in different Bulgarian cities, where family members of sufferers met and discussed their problems with regional authorities and professionals. The Ombudsman of Bulgaria organised a press-conference on the problems of families with sufferers from dementia and urged the government to take urgent and adequate action. ABA continueously informed the mass media about dementia related problems. 7Brussels, May 2012Association Alzheimer Bulgaria

Future goals ABA wants to ensure adequate social protection for the affected persons and their families, by: launching and participating in the development of a national action plan, which is backed by sufficient funding; coordinating multidisciplinary discussion of dementia problems (Ministry of Health, Ministry of Labor and Social Policy, municipal authorities); extending and making permanent the presence of sufferers relatives in the TV, the radio, the printed media, and the internet. 8Brussels, May 2012Association Alzheimer Bulgaria

Finally: A quote from a wife of a patient Nothing can give us back our lives, but everybody has the right to a dignified life, after all. 9Brussels, May 2012Association Alzheimer Bulgaria

Thank you for your attention! Irina Ilieva Executive Secretary Alzheimer Bulgaria phone: Brussels, May 2012Association Alzheimer Bulgaria

BACKUP 11Brussels, May 2012Association Alzheimer Bulgaria

Quotations from our survey: Doctors prescribe drugs for me to buy, but there is a lack of money and I cannot buy them. I need the medicine but I cannot take it. My sons had to take bank credits to buy medicines, pampers and other sanitary materials. We have spent over 15 thousand BGN (7,670 ) in 4 years. The average pension in Bulgaria: 148 * The average monthly gross salary: 372 * 12Brussels, May 2012Association Alzheimer Bulgaria *In 2011 Q4, National Statistic Institute

Projects and results: Policy making 2 In 2010 (and ongoing) ABA systematically collected data on the costs of families related to the daily care for an ill family member. ABA took active role in the elaboration of Strategy for Social Services in Sofia Municipality which envisages the development of social services for dementia sufferers (but lacks funding). ABA held 8 round tables in different towns with local authorities and families with sufferers. 13Brussels, May 2012Association Alzheimer Bulgaria