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Alzheimer Bulgaria Association2003 - 2012

15-16 May 2012

Brussels

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About Alzheimer Bulgaria Association (ABA)

ABA was established in 2003 through the joint effortsof 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 inBulgaria”.

We mark this date every year since then. ABA is a member of

Alzheimer Europe

Bulgarian‟s Patient‟s Confederation “Health Protection” 

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What made us organize ourselves

Situation in Bulgaria:

100 000 dementia related cases

50 000 Alzheimer cases

Accelerating of aging process (National DemographicStatistics 2011 report 20% increase of population over65 since 2000)

No coordination between the country‟s different

systems - health care, social, municipalities

No national health strategy

No national plan for dementia

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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 take

care of sufferers in over 70% ofthe cases

85 % meet commonfinancial difficulties

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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 ProtectionAgainst 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 ReimbursementAct the way it was stipulated by the Supreme Administrative Court.

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Projects and results: Direct support

In 2009 ABA created Information and ConsultingCenter 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 tolack of sustainable funding by the Government

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Projects and results: Raised public awareness

Through 2009-10 ABAorganized a total of 12 thematicworkshops in different Bulgariancities, where family members

of sufferers met and discussedtheir problems with regionalauthorities and professionals.

The Ombudsman of Bulgariaorganised a press-conference

on the problems of familieswith sufferers from dementia and urged the government to takeurgent and adequate action.

ABA continueously informed the mass media about dementiarelated problems.

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Future goals

ABA wants to ensure adequate social protection for theaffected persons and their families, by:

launching and participating in the development of a

national action plan, which is backed by sufficientfunding;

coordinating multidisciplinary discussion of dementiaproblems (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 printedmedia, and the internet.

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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.”

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Thank you for your attention!

Irina IlievaExecutive SecretaryAlzheimer Bulgariaphone: +359 2 470 6448e-mail: office@alzheimer-bg.orgwww.alzheimer-bg.org

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BACKUP

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Quotations from our survey:

“Doctors prescribe drugs for me to buy, but there is alack of money and I cannot buy them. I need themedicine but I cannot take it.” 

“My sons had to take bank credits to buy medicines,pampers and other sanitary materials. We have spentover 15 thousand BGN (7,670 €) in 4 years.” 

The average pension in Bulgaria: 148 €*

The average monthly gross salary: 372 €*

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*In 2011 Q4, National Statistic Institute

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Projects and results: Policy making 2

In 2010 (and ongoing) ABA systematically collecteddata 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 envisagesthe 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.

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