Romania (www.haenet.ro):
Dr. Dumitru Moldovan from the Romanian
Network for HAE writes about the recent
achievements in the emergency management of
HAE attacks in Romania:
“In the past eight years a pilot centre was built up and patients
confirmed with C1-INH were included in a national register of
HAE. An HAE patients association was founded two years ago. In
the past two years a sustained effort was made to put together
experts on HAE, patients’ representatives, emergency department
leaders and authorities in Romania to start the first program of
emergency care of HAE attacks. Interviews with states secretaries
responsible for the emergency medical care from Ministry of
Health and Ministry of Internal Affairs were planned.
As of March 2015, the Registry of HAE patients includes 91
patients from 31 families. In the past year, these patients have
recorded 920 peripheral, 770 abdominal, 170 facial, and 80
upper respiratory attacks.
Since summer 2013 a gradual positive attitude of the Ministry of
Health was noted regarding the reimbursements of new drugs
approved for treatment of HAE attacks. Data from the Romanian
Registry of HAE patients were provided and direct costs of
treatment of facial, upper respiratory and abdominal attacks were
evaluated. Elaboration of a protocol for treatment of HAE
attacks is ongoing. A 24/7 telephone HAE expert consultancy is
offered.
Ruconest meets legal requirements for reimbursement -
acquisition has been started and the first vials were administered.
(Ruconest voldoet aan de wettelijke eisen voor vergoeding -
acquisitie is gestart en de eerste flesjes werden toegediend.)
The recent developments on the cooperation between patients’
organization, HAE experts, emergency departments and
authorities enable us to hope a new era is coming to HAE patients
in Romania.”