ARPID, Romanian primary immunodeficiencies patients group, was very busy this last this summer! Young patients and families enjoyed some time together in a summer camp, and, in September ARPID had an important advocacy meeting at Health Ministry in Bucharest.
ARPID organised a children’s summer camp in Buzias, near Timisoara between 28 of August and 4 of September. 30 children and parents enjoyed a week of interaction, learning about primary immunodeficiencies (PIDs), walks, sports, nature experiencies, a trip to the city of Timisoara, and other activities. Dr Serban and Dr Batanean, big advocates for PIDs awareness in the country, also meet up with the children and the families.
On September 4, ARPID had a meeting at the Health Ministry in Bucharest, with Dr Alexandrescu – Secretary of State for Health. Romanian patients are facing a difficult situation in the country regarding access to IGs. With the clawback tax issue, companies are leaving the country and patients’ access to treatment is getting increasingly difficult.
ARPID explained to the health authorities the effects of this issue on patients’ lives and left the meeting with the governmental commitment that the issue will be solved. Paediatric patients will be the first to regain access to treatment, followed by adult patients.
The second topic on the agenda was the coverage of only intravenous immunoglobulins but also of subcutaneous immunoglobulins. According to the Health Ministry representative, this might be possible as of next year.