Description of access to care for α1-antitrypsin deficiency patients in some Eastern and Western European countries
| Country | α1-antitrypsin deficient subjects | ||||||
| Population million# | National centres n | Location of national centres | Patients monitored | Access to augmentation | Patients receiving augmentation therapy n | Reimbursement¶ (status in January 2017) | |
| East European centres | |||||||
| Bulgaria | 7.09 | 0 | 0 | By university clinics on individual basis | No access | 0 | Not covered by public health insurance |
| Croatia | 4.22 | 0 | 0 | By university clinics on individual basis | No access | 0 | Not covered by public health insurance |
| Czech Republic | 10.55 | 1 | Thomayer Hospital Prague | By national centre (63 PiZZ patients) | Unrestricted | 21 | 100% covered by public health insurance |
| Hungary | 9.81 | 4 | Plan to set up 4 national centres at universities (2016) | By national centres | No access | 0 | Not covered by public health insurance |
| Latvia | 1.95 | 1 | Centre of TB and Lung Disease, Riga East University Hospital | By national centre (∼20 PiZZ patients) | Limited access | 1 | Not covered by public health insurance |
| Poland | 38.59 | 1 | National Institute of Tuberculosis and Lung Diseases in Warsaw, The Childrens Memorial Health Institute in Warsaw | By national centre (70 patients) | No access | 0 | Not covered by public health insurance |
| Romania | 19.34 | 1 | Marius Nasta Institute of Pneumology, Bucharest | By national centre (7 patients) | No access | 0 | Not covered by public health insurance |
| Russia | 143.44 | 0 | 0 | By university clinics on individual basis | No access | 7 | Not covered by public health insurance |
| Serbia | 8.80 | 0 | 0 | By university clinics on individual basis (∼20 patients) | No access | 0 | Not covered by public health insurance |
| Slovakia | 5.43 | 3 | Plan to set up of centres (Kosice, Bratislava, Vysne Hagy) | By national centres | Limited access | 1 | Every single patient has to be individually agreed with health insurance |
| Slovenia | 2.09 | 0 | 0 | N/A | No access | 0 | Not covered by public health insurance |
| West European centres | |||||||
| Austria | 8.49 | 8 | Vienna, Salzburg, Graz, Hörgas-Enzenbach, Wels-Grieskirchen, Natters, Klagenfurt, Hohenems | By general practitioners | Unrestricted | 130 | 100% covered by public health insurance |
| Belgium | 11.48 | N/A | All over the country | University hospitals and local hospitals by pneumologists | Unrestricted | 56 | 100% covered by public health insurance, but only for patients who started therapy before 2010 No reimbursement for new patients after 2010 |
| Denmark | 5.70 | 1 | Copenhagen | By university clinic, follows up patients on individual basis | No access | 0 | Not covered by public health insurance |
| France | 64.73 | N/A | All over the country | By university hospitals, local hospitals, private practices | Unrestricted (to PiSZ and PiZZ) | >300 | 100% covered by public insurance |
| Germany | 80.68 | 60 | All over the country | By university hospitals, local hospitals, private practices | Unrestricted | >1000 | 100% covered by health insurance |
| Italy | 59.80 | >20 | All over the country | University hospitals and local hospitals by pneumologists | Unrestricted | 115 | 100% covered by public health insurance |
| Ireland | 4.72 | 1 | Dublin | By national centre | Limited access | 23 | Not covered by public health insurance |
| The Netherlands | 15.1 | 1 | Leiden University Med Center | By national centre | No access | 0 | Not covered by public health insurence |
| Portugal | 10.29 | 27 | All over the country | By university hospitals and local hospitals by pneumologists | Unrestricted | 118 | 100% covered by public health insurance |
| Spain | 46.05 | >40 | All over the country | By university hospitals and local hospitals by pneumologists | Unrestricted | 170 | 100% covered by public health insurance |
| UK | 65.20 | 5 | Birmingham, Edinburgh, Cambridge, Coventry, London | Major centres by experts and local hospitals by pneumologists | No access but some named patients with panniculitis (off label indication) | 0 | Full if approved for Individual Funding Request by local commissioners (in NHS England) |
Data were provided by: Karin Schmid-Scherzer (Austria); Jacques Hutsebaut (Belgium); Kosta Kostov (Bulgaria); Neven Tudoric (Croatia); Jan Chlumsky (Czech Republic); Asger Dirksen (Denmark); Gabriel Thabut (France); Claus Vogelmeier (Germany); Attila Somfay (Hungary); Noel G. McElvaney (Ireland); Ilaria Ferrarotti (Italy); Alvils Krams (Latvia); Jan Stolk (the Netherlands); Joanna Chorostowska-Wynimko (Poland); Maria Sucena (Portugal); Ruxandra Ulmeanu (Romania); Kirill Zykov (Russia); Branislava Milenkovic (Serbia); Ivan Solovic (Slovakia); Marc Miravitlles (Spain); Robert A. Stockley (UK). N/A: data not available. #: information from www.worldometers.info; ¶: status in January 2017.