Background: As patient organisations continue to professionalise and expand their activities, their need for financial resources is also increasing, which is often covered by pharmaceutical companies. In order to make these financial flows more transparent, the pharmaceutical industry has responded with voluntary commitments to greater transparency. The AIHTA (then still known as LBI-HTA) systematically analysed this data on sponsorship of patient initiatives for the first time in 2014 and aims to carry out consistent and ongoing monitoring of payments. The present fourth update of the systematic analysis investigated the extent to which patient initiatives in Austria were financially supported by pharmaceutical companies in 2019.

Method: Again, the websites of all PHARMIG member companies (as of April 2021) were examined for information on financial contributions to patient organisations in 2019. The data collected was then summarised by company, patient initiative and disease.

Result: Information for 2019 was found for 39 out of 115 PHARMIG member companies. The case-by-case verification of the information on the websites of patient organisations was not successful. In 2019, PHARMIG member companies reported donations to patient initiatives totalling € 2,276,802.54 on their websites. The highest donations (about 85% in total) were made to initiatives in the nine areas of haemato-oncology, haemophilia, lung diseases, diabetes and metabolic diseases, rare diseases, other (social initiatives etc.), neurology, skin and intestinal diseases. As in the previous year (and in 2015 and 2016), the Austrian Haemophilia Society received the largest sum as a single organisation in 2019 with € 287,522.83; the second-placed organisation this time was PHA Europe (European pulmonary hypertension association), which received € 200,000.
Compared to the previous year, a significant increase of around 37.4% can be observed in the total amount declared, although the disclosure rate was lower. However, the number of disclosures is still significantly higher compared to 2014 (2014: 24/115 PHARMIG companies declared donations to patient initiatives, 2018: 49/113, 2019: 39/115).

Conclusions: The important step taken by the pharmaceutical companies in committing themselves to more transparency remains only a first step; implementation is a second. Consistent monitoring by a critical public is still needed to follow the implementation.