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Kosztolanyi Hun
Kosztolanyi Hun
Kosztolanyi Hun
Kosztolanyi Hun
Kosztolanyi Hun
Kosztolanyi Hun
Kosztolanyi Hun
Kosztolanyi Hun
Kosztolanyi Hun
Kosztolanyi Hun
Kosztolanyi Hun
Kosztolanyi Hun
Kosztolanyi Hun
Kosztolanyi Hun
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Kosztolanyi Hun

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  • 1. Legal environment of rare disease health policy in Hungary XXI/2008/HP: Law on genetic testing, screening and biobanking Hungarian Parliament Ministry of Health Health Commission of the Parliament National Public Health and Medical Officer Service Public Health Program National Centre for Healthcare Audit and Inspection Rare Disease Centre est. in November 2008 by modification of Deed of Foundation
  • 2. Structure of Rare Disease Centre National Centre for Healthcare Audit and Inspection Rare Disease Centre National RD Advisory Board (universities, governmental, patient representatives) National RD Research Coordination Centre outsourced to the University of Pécs (approved by the Senate in April 2009)
  • 3. Structure of Rare Disease Centre National Centre for Healthcare Audit and Inspection Nominated RD responsible persons in the Rare Disease Centre Ministry of Health, in the National Institute of Pharmacy National RD Advisory Board (universities, governmental, Universities’ internal RD coordination units patient representatives) Regular consultation with National Board National RD Research Coordination for Clinical Genetics Centre outsourced to Pécs University (approved by the Senate in April 2009) Project based collaboration with sociological centers, National Foundation for Disabled Persons, National Centre for Statistics
  • 4. Availability of specific genetic tests At present many laboratories with molecular facilities offering genetic tests small capacities, narrow scale of disorders, lack of quality system scarsity of genetic specialists, limited reliability reimbursed by the state without obligation for confluent service 15 genetic counseling clinic (satisfying the minimal requirements) shortages in registered counselers, services far from the patients less capacities than needed – inequitable access Plan for reorganisation of genetic services (proposed by the National Board for Clinical Council) → 6 qualified labs (concentration) → increased geographical density of genetic counseling clinics
  • 5. Plans for reorganisation of genetic services Main goals central genetic diagnostic units high standard multidiscipl. facilities,  centralising knowledges and technology full-scaled genetic labs  shortening the healthcare pathways of university based the patients (access in all 50 km circles) biobanking research and education tasks „cetres of expertise and reference” genetic counseling clinics possibilities for multidiscpl. consult. presence of trained genetic counselers taking of samples for tests „temporary biobanking” Plans „primary genetic service care” • the network is coordinated and controlled by a national administrative centre • units are reimbursed by the national insurance and obliged for continuous service • centrec have responsibilities for the primary service also (telemedicine)
  • 6. Screening existing prenatal screening programs: national trisomy-screening > compulsory screening of nuchal translucency (national) > compulsory biochemical tests from maternal blood AFP (!?): national, others (integr. or comb) tests : regional  conflict of interest between privat firms and the state services > free acces for the invasive diagnostic test  restriction of the capacity Proportion of prenatal diagnosis of Proportion of induced abortion of Down Down syndrome in Hungary syndrome in Hungarian districts 45 40 35 30 25 % 20 15 10 5 0 75% < 1980-84 1985-89 1990-94 1995-99 2000-02 2003-06 50% - 75% 25% - 50% < 25%
  • 7. Newborn screening program National programs (covering all neonates) From the ~ 60’s: 4 disorders (PKU, galactosaemia, biotinidase deficiency, hypothyreosis) at present: 25 inborn errors of metabloism Tandem mass spectrometry in two centres (Univ. Children Hospitals in Budapest, Szeged) Regional (pilot) programs CAH Hearing impairment
  • 8. Best practices on RD care Advisory board for RD national boards of almost every medical profession have nominated expert on rare diseases RD Protocols’ elaboration is organized by the Ministry of Health RD related guidelines and protocols released on, e.g. cystic fibrosis myasthenia gravis autism spectrum disorders congenital inborn errors of metabolism children with MCA/MR children with mental retardation Quality system National Centre of Healthcare Audit and Inspection – to develop external quality assessment
  • 9. Plans for development of centres of expertise/reference At present expensive therapies available in centres only the centres are assigned by National Health Insurance Foundation case-by-case no systematic accreditation, and service development of CE Ongoing project on database building of RD providers: conferences on centers of excellence (2008, 2009) preparation of accreditation system concentration of outpatient care for RD
  • 10. Plans for development of centres of expertise/reference At present expensive therapies available in centres only the centres are assigned by National Health Insurance Foundation case-by-case 80% of patient within 50 km no systematic accreditation, and service development of CE 50000 45000 number of patients 40000 Ongoing 35000 30000 25000 20000 project on database building of RD providers: 15000 10000 conferences on centers of excellence (2008, 2009) 5000 0 preparation of accreditation system 0 24 9 4 10 9 15 49 22 24 30 99 37 74 12 24 17 74 20 99 25 49 27 74 32 24 35 49 9 0- -4 -7 -9 39 0- 1 2 1 1 1 2 2 2 3 3 3 concentration of outpatient care for RD 25 50 75 5- 0- 0- 0- 5- 5- 0- 5- 0- 5- 0- 5- distance (living area – outpatient center; km)
  • 11. Orphan drugs • few of them is available in Hungary • if a patient needs orphan drug not commercialized in Hungary: application to the National Health Insurance Foundation, case-by-case expert group evaluation, rigorous budgetary constrains preced the decision for special drug import • the cost is very small for patients who get permission for the OD • the National Institute of Pharmacy has no distinct protocol for orphandrugs’ authorization
  • 12. Empowerment of patients organizations • patients’ representatives are in the Normative from national 3,5% National RD Advisory Board budget Non-normative from 9,9% • there is no regular, direct national budget governmental support for RD self 1% of personal taxes 0,7% help groups National foundations 3,0% • there are many indirect financing mechanism of the government: ¼ VAT-refund 0,5% of the civil budget is from governmental sources Normative from local 0,4% governments’ budget • study on social capital of families Non-normative from with RD child local governments’ 4,2% budget • Governmental institutions study on the sociological features 1,4% budget of RD self-help groups 23,6 governmental together %
  • 13. EurordisCare3 survey in Hungary EurordisCare3 Hungary Hun/EC3 Number of medical services used per patient over the last 2 years 9,4 9,2 0,98 Number of different care used per patient over the last 2 years 2,4 1,9 0,81 Rejection by health professionals 17,8% 15,1% 0,85 Rejection linked to the disease 14,7% 12,6% 0,86 Rejection linked to the patients physical aspect 1,8% 1,3% 0,69 Rejection linked to the patients behaviour 1,9% 1,1% 0,60 Rejection linked to the patients communication difficulties 2,6% 1,9% 0,72 Need for social assistance 29,0% 21,0% 0,72 Access to social assistance impossible 4,8% 7,5% 1,58 Access to social assistance difficult 27,4% 34,2% 1,25 Access to social assistance easy 67,8% 58,2% 0,86 Reduction in professional activity as patient 29,0% 30,1% 1,04 Reduction in professional activity to take care of a relative 29,9% 24,8% 0,83 Need for moving 17,8% 25,1% 1,41 to a more adapted house 10,8% 18,3% 1,70 to a specialised care centre 2,3% 3,0% 1,33 nearer to specialists 2,5% 1,2% 0,47 closer to a relative 2,9% 3,7% 1,27
  • 14. Conferences/meetings on multidisciplinary care Multidisciplinary care of Down-children (2006.) systematic review of the contribution of different professions benefit of collaborations Case studies on Down-families (2007.) focusing on the crucial problems of the Down-children and their families identifying intervention targets Rare disease patients’ organizations role in life quality improvement (2008)Establishing RD health policy discussion on patient groups as organizations elements by structure, operation, impact, non-utilized opportunities Every child is unique (2009) - utilization of the existing Montessori pedagogy for handicaped children organizations, legal opportunities, expertise Rare Disease Day (2006, 2007, 2008) for health care professionals - building capacities, networks Rare Disease Awareness Day (2007, 2008) participation in HUFERDIS meetings - considering the EU recommendation Lectures in conferences on genetics, public health, sociology Keeping on agenda the necessity of national program

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