1. Financing cystic fibrosis – focusing on pulmonary transplantation
Tamás Szamosi
medical expert
National Health Insurance Fund Administration
CF Better Together Conference
COLLABORATION WITH OUR NEIGHBORS CONFERENCE IN HUNGARY
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2. The role of the National Health Insurance Fund Administration (NEAK)
The National Health Insurance Fund is supervised by the Government of Hungary
The central official organ of health insurance is managed by the Government through the Minister of Human Resources.
Benefits in kind (like cost-free healthcare services - preventive examinations, primary healthcare, specialised inpatient care, specialised outpatient care, rehabilitation, drug reimbursement, reimbursement for medical aids, etc.) and cash benefits are provided by the NEAK to the insured persons.  The NEAK has contractual relations with the healthcare providers. Investment and development costs of healthcare institutions are not covered by the Health Insurance Fund budget.
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3. Reimbursement for different provider’s level
Risk presents on
the provider’s level
Primary care: per-capita + supplementary payment + quality parameters based additional payment
Specialised care
Acute hospital care = DRGs like payment with some additonal rules
Chronic hospital care = bed-days modified depending on type of chronic care
Half-day rehabilitation reimbursement based on protocol
Out-patient care = fee for service
Item-based reimbursement
Risk presents on
the payer’s level
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4. Cystic fibrosis (mucoviscidosis):
Inherited (autosomal recessive), chronic, progressive disease
→ incurable, but treatable
prevalence: Hungary 1:4000 (elsewhere 1:2500)
life expectancy over 30 years.
Effected organs:
Risks:
Respiratory system
Bacterial and fungal infections, progressive lung destruction
Digestive system
Weight loss, chronic pancreatitis, malabsorption
Reproductive system
Late puberty, male infertility
glandulae sudoriferae
Salty sweat, dehydration, upset of the balance of minerals 
Life expectancy determined by the state of the lungs usually
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5. The European Cystic Fibrosis Society (ECFS)
- patients registrated (till )

6. Financing cystic fibrosis
Health care components:
(Genetic background – only in families with known mutations)
Diagnosis
In-patient and out-patient care (patient’s history, physical examination, laboratory measures, imaging technologies, imaging technologies (X-rays, US, CT, HRCT), pulmonary function examinations
controls
Treatment of acut exacerbations
Non-pharmaceutical, pharmaceutical, surgical
Rehabilitation
Pre- and posttransplant procedures
Chronic medical attendance
Palliative care
GOAL: maintain quality of life
→ prevent infections
→ eradication of early infections
→ avoid malnutrition
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7. Changes in DRG in connection with cystic fibrosis
** Főcsoport: 04
Diseases of the respiratory tract
Min. days required
Max. days
Value unit *
04M
1450
Cystic fibrosis (lungs) 3 37
1,68818
Introduction of course-like in-patient care ( )
#,*
04M
145A
Treatment of cystic fibrosis patients with broad spectrum intravenous antibiotics „A” 14 28
0,21024
145B
Treatment of cystic fibrosis patients with intravenous antibiotic combination „B”
1,23203
145C
Treatment of cystic fibrosis patients with broad spectrum intravenous antibiotic combination „C”
3,21923
145A and 145B DRG inactivation ( )
Changes in value unit: *
04M
1450
Cystic fibrosis (lungs) 3 37
1,57298 #*
145C
Treatment of cystic fibrosis patients with broad spectrum intravenous antibiotic combination „C” 14 28
2,68269
Discontinuation of performance-volume limit (PVL) ( ):
DRG
04M 1450
Cystic fibrosis (lungs)
04M 145C
Treatment of cystic fibrosis patients with broad spectrum intravenous antibiotic combination „C”
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8. National Health Insurance Fund Administration – Health, safety!
Health care data
PVL lifted
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9. National Health Insurance Fund Administration – Health, safety!
Health care data
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10. National Health Insurance Fund Administration – Health, safety!
Health care data
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11. Number of cases by country of origin (2012-2016)Év
Number of patients
Costs (1000 HUF)
Hungarian*
Foreigner*
2012
1 207 4 37
2013
1 167 5
778
2014
1 139 6
598
2015
1 110
172
2016
1 102
131
*Data by country issueing the form
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12. Cases of cystic fibrosis by the age of the patients (2016)
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13. Cystic fibrosis in-patient care data by provider – (2016)
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14. Cystic fibrosis in-patient care data by provider – (2016)
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15. Financing cystic fibrosis
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16. Financing cystic fibrosis
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17. Number of pulmonary transplantations by diseases
COPD: Chronic obstructive pulmonary disease; A1ATD: alpha-1 antitrypsin deficiency; CF: cystic fibrosis; IIP: Idiopathic interstitial pneumonitis; ILD: Other intertitial pulmonary disease

18. National Health Insurance Fund Administration – Health, safety!
The story of the Hungarian pulmonary transplantation
pulmonary transplantation was performed in Vienna, Austria - international cooperation, the costs were reimbursed after preliminary authorization
The costs of the transplansplantation were in between 25 million- 66 million HUF.
/1993 (IV. 2.) regulation Appendix No. 8. pulmonary transplantation occurs (costs: 20 million HUF per procedure).
Transplantations are performed in close cooperation between the Semmelweis University and the National Institute of Oncology
– first pulmonary transplantion was performed under the new circumstances
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19. Pulmonary transplants in Vienna (2010-2016) Other CF
Number of lung transplantations reimbursed by NEAK
Pulmonary transplants in Vienna ( )
Other CF
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20. Pulmonary TX Vienna– Budapest 12.12.2015. - 20.09.2017.
Diagnosis
LuTx Vienna (n=7)
LuTx Budapest (n=36)
Felnőtt
COPD 17
Idiopathic pulmonary fibrosis (IPF) 1 6
IPF / ECMO Bridge
Cystic fibrosis (CF)
CF / Pulm/Kidney Tx
CF / Pulm/Liver Tx
Primer pulmonális hypertension (PH) 2
PH / ECMO Bridge
Hystiocytosis
Brochiectasia
Lymphangioleiomyomatosis (LAM)
Children CF

21. Hungarian Pulmonary Transplantations between 2015.12.12.-08.2017.
Pulmonary TX by indications (NEAK financed)
Hungarian Pulmonary Transplantations between
Cystic fibrosis
Other, COPD
Bronchiectasia
Pulmonary eosinophilia
Other interstitial
pulmonary disease
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22. Hungary in the EUROTRANSPLANT
EUROTRANSPLANT: actually 8 countries involved
Austria, Belgium, Netherlands, Croatia, Luxembourg, Germany, Slovenia and Hungary (full license from 1st July 2013.)
More than 134 million inhabitants
Appr patients involved in a single donor reporting system with a centrally coordinated waiting list (ENIS= Eurotransplant Network Information system)
77 transplant centers
Anually appr donor organs distributed
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23. Hungary in the EUROTRANSPLANT
How to get on the waiting list?
The patient has valid Hungarian health insurance
The patient is a citizen of a memberstate of the European Union and has a valid approval of confirmation of costs
(E 112/S2)
The patient is a citizen of a country which has a bilateral convention with Hungary and the patient recieves a valid approval of confirmation of costs (Albania, Serbia, Bosnia and Herzegovina, Montenegro)
Third countries (e. g. Ukraine, Canada, etc.): by arrangement (24 months fee must be paid)
Important aspects of allocation: the probable result of the TX, level of urgency, how long time does the patient had on the waiting list, organ balance between the countries
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24. National Health Insurance Fund Administration – Health, safety!
Legislation
Act CLIV. of 1997 on Health
Act LXXX. of 1997 on the Eligibility for Social Security Benefits and Private Pensions and the Funding for These Services
340/2013. (IX. 25.) Government Decree about the rules of medical treatment carried out in foreign countries
 Act LXXXIII of 1997 on the benefits of compulsory health insurance
Government Decree 43/1999 (III.3.) on the detailed rules of financing healthcare services from the Health Insurance Fund
Ministerial Decree 9/1993 (IV. 2.) Appendix 8. on processes in item based financing
If you have any further questions: Integrated Rights Protection Agency
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25. Additional „costs” of transplantation
Hungary in the EUROTRANSPLANT
Additional „costs” of transplantation
Registration fee (different by country in EUROTRANSPLANT)
The balance between the offered and received organs
The EUROTRANSPLANT agreement itself does not prohibit non-resident patients’ transplantation
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26. Hungary enters EUROTRANSPLANT with full license in 2013.07.01
Transplantations performed on behalf of patients with valid Hungarian health insurance (NEAK reimbursed)
Hungary enters EUROTRANSPLANT with full license in
Kidney Tx
Pancreas Tx
Liver Tx
Heart Tx
Lung Tx
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27. Costs of pulmonary transplantation in Hungary
Reimbursement of pulmonary transplantation
Costs of pulmonary transplantation in Hungary
National Health Insurance Fund Administration  – Health, safety!

28. Conclusions and future perspectives
Close monitoring of international trends and guidelines in the field for the benefit of the patients
Helping our specialists to achieve their professional goals with policy
Assisting in the evaluation and quality insurance of the necessary procedures by producing obtainable data and common platforms to impove the quality of health care in Hungary
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29. National Health Insurance Fund Administration – Health, safety!
Thank you for your attention!
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