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Alzheimer Bulgaria Association 2003 - 2012

Alzheimer Bulgaria Association 2003 - 2012. 1 5 - 16 May 2012 Brussels. About Alzheimer Bulgaria Association (ABA). ABA was established in 2003 through the joint efforts of families with sufferer and professionals.

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Alzheimer Bulgaria Association 2003 - 2012

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  1. Alzheimer Bulgaria Association2003 - 2012 15-16May 2012 Brussels Association Alzheimer Bulgaria

  2. 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 Alzheimer’s 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 • Bulgarian’s Patient’s Confederation “Health Protection” Association Alzheimer Bulgaria

  3. What made us organize ourselves Situation in Bulgaria: • 100 000 dementia related cases • 50 000 Alzheimer cases • Accelerating of aging process (National Demographic Statistics 2011 report 20% increase of population over 65 since 2000) • No coordination between the country’s different systems - health care, social, municipalities • No national health strategy • No national plan for dementia Association Alzheimer Bulgaria

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

  5. Projects and results: Policy making As a result of ABA‘s contineous efforts drugs for the Alzeihmerdesease were included in Bulgaria‘s 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 ABA‘s appeal that the Ministry of Healthcare should amend the Reimbursement Act. • In 2012, after the Ministry of Healthcare failed to obey the court‘s 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. Association Alzheimer Bulgaria

  6. 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 Association Alzheimer Bulgaria

  7. Projects and results: Raised public awareness • Through 2009-10 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 Bulgariaorganised a press-conference on the problems of familieswith sufferers from dementia and urged the government to take urgent and adequate action. • ABA continueously informed the mass media about dementia related problems. Association Alzheimer Bulgaria

  8. 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); • extendingandmaking permanent thepresenceofsufferers‘ relatives in the TV, theradio, theprintedmedia, andtheinternet. Association Alzheimer Bulgaria

  9. 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.” Association Alzheimer Bulgaria

  10. Thank you for your attention! Irina Ilieva Executive Secretary Alzheimer Bulgaria phone: +359 2 470 6448 e-mail: office@alzheimer-bg.org www.alzheimer-bg.org Association Alzheimer Bulgaria

  11. BACKUP Association Alzheimer Bulgaria

  12. 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 €* *In 2011 Q4, National Statistic Institute Association Alzheimer Bulgaria

  13. 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. Association Alzheimer Bulgaria

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