Background: As patient initiatives expand their activities and continue to professionalise, their need for financial resources, which often gets bankrolled by pharmaceutical companies, increases accordingly. To make these financial transactions more transparent, the pharmaceutical industry responded with voluntary disclosure commitments. AIHTA (then still as LBI-HTA) systematically analysed the content of these voluntary disclosures of sponsorship for patient initiatives by members of the Association of Austria’s Pharmaceutical Industry (PHARMIG - Verband der pharmazeutischen Industrie Österreichs) for the first time in 2014 and aims to carry out a regular and consistent monitoring of these payments. The present fifth update systematically researched the extent of financial support of patient initiatives disclosed by member companies of PHARMIG for the fiscal year of 2021.

Method: Once more the websites of all PHARMIG member companies (as of March-April 2023) were examined for disclosed financial contributions to patient initiatives for the fiscal year of 2021. The information was first uniformly compiled and then analysed according to sponsoring PHARMIG member companies, as well as sponsored patient initiatives and sponsored groups of diseases.

Results: 90 out of 115 PHARMIG member companies disclosed their financial relation to patient initiatives in the fiscal year 2021, an increase from previous years (2014: 24, 2015: 36, 2016: 38, 2018: 44, 2019: 39). In 2021, PHARMIG member companies disclosed donations to 117 different patient initiatives totalling € 2,703,853.-, of which € 297,500.- or eleven percent were not disclosed individually but only in aggregate – this in violation of PHARMIG disclosure rules. Disclosed donations increased in 2021 by about 19% compared to the last available year 2019. The patient initiative PHA Europe (European pulmonary hypertension association) received the largest amount of disclosed donations with € 251,780.-, followed by the Austrian Hemophilia Society (Österreichische Hämophilie Gesellschaft) with € 194,946.- in 2021. In 2019 the ranking had been the reverse. Seven groups of diseases (lung, oncology, rare diseases, neurology, hemophilia, bowel and AIDS/HIV) received donations of over € 100,000.- each, accounting for 87% of individually disclosed donations in 2021. The ten remaining groups of diseases accounted for the rest. The evaluation of financial disclosures on patient initiative websites was undertaken on a sample basis. Some displayed no disclosures at all, many were incomplete.

Discussion: An increasing number of PHARMIG member companies takes the disclosure of financial transactions with patient initiatives seriously. The format and content of these disclosures are still not uniform and the quality varies widely, thus complicating the work on systematic evaluations unnecessarily and making them prone to mistakes. Transparency about financial transactions by the pharmaceutical industry remains in its infancy regarding patient initiatives. Continuous monitoring by a critical public is needed to observe further developments in this area.