We had multiple successes in the field of health policy advocacy. Our greatest achievement is a campaign for SCIG home therapy reimbursement for adult patients with primary immunodeficiences in in Poland (2014) and a campaign for therapy reimbursement for individual patient with an extremely rare immunodeficiency in Poland (2019).
Successful patient advocacy
We had multiple successes in the field of health policy advocacy. Our greatest achievement is a campaign for SCIG home therapy reimbursement in 2014. Earlier we also manage to provide access to immunoglobulin therapy for several group of patients with immunodeficiency. We also persuaded the Ministry to change the reimbursement conditions. We worked closely with nationwide media, MEPs, key experts and opinion leaders. We also took part in advocacy activities on the European level - meetings and sessions with MEPs from different EU groups. We cooperated with health policy agencies, industry representatives and patient organisations - national and international ones. Moreover, we also provided assistance in social security law for many individual patients in Poland.
Campaign for therapy reimbursement
Our latest policy advocacy achievement is a campaign in 2019 for therapy reimbursement for patient with an extremely rare immunodeficiency in Poland. The case was about an off-label use (import docelowy) of an interferon gamma product. The issue was that this medicine was not registered for this specific immunodeficiency. As there are just 9 patients with this disease described in scientific papers worldwide, there are no clinical trials performed for this specific indication, but the Ministry demanded results of double-blind tests. After a few months of the battle, we managed to persuade the Ministry of Health to change the negative decision on therapy reimbursement. How we did it? We notified the media and we have sent a request for support to the most important politicians in the country. We recalculated the numbers used by the public HTA agency to prove that the therapy isn't too expensive as they previously stated and managed to convince them that they should ask for Polish expert's opinion as there's no double-blind test available. Finally the Ministry of Health, despite the previous refusal, accepted our arguments.