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 immunodeficiencies in Poland (2014) and a campaign for therapy reimbursement for an individual patient with an extremely rare immunodeficiency in Poland (2019).
Successful patient advocacy
We have 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 managed 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 organizations - 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 a 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 did we do it? We notified the media and we 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 is not too expensive as they previously stated and managed to convince them that they should ask for a Polish expert's opinion as there are no double-blind tests available. Finally, the Ministry of Health, despite the previous refusal, accepted our arguments.
Constant activities in advocacy
We have taken part in a number of advocacy activities on the European level – meetings and sessions in Brussels with MEPs from different EU groups. We have cooperated with health policy agencies, industry representatives and patient organizations – national and international ones. Moreover, we have also provided assistance in social security law for many individual patients in Poland. For years, we have been involved in activities aimed at improving the quality of medical care, but also taking care of the quality of patients’ lives. We act to meet the needs of patients treated with PDMPs, especially in terms of increasing plasma acquisition and taking actions related to blood safety. We participated in the plasma panel at the European Economic Congress 2019 in Krynica and in the discussion about plasma at the European Economic Congress 2021 in Karpacz. We were panelists at the Global Plasma Summit 2021, where we presented our plasma report and talked about the situation in Poland. We presented our activities during the Plasma Protein Forum 2022 and the European Conference on Rare Diseases 2022.