Background: As part of the ongoing professionalisation of patient organisations and the expansion of their activities, their need for financial resources keeps increasing. This need is often met by pharmaceutical companies. In order to make this financial support more transparent, the pharmaceutical industry has responded with voluntary commitments to greater transparency. The LBI-HTA conducted a systematic analysis of the published data in 2014 and is aiming to continue the consistent monitoring of these payments. The research question underlying this third update of the systematic analysis was, to what extent patient initiatives in Austria received financial support from pharmaceutical companies in the year 2018.

Method: Again, the websites of all PHARMIG member companies (as of September 2019) were examined for information regarding financial support for patient organisations in the year 2018. The collected data was thereafter grouped according to pharma companies, patient organisations and fields of diseases.

Result: 49 out of 113 PHARMIG member companies have declared financial contributions to patient organisations for the year 2018. An attempt to verify this information on the websites of patient organisations was of limited success. A total sum of € 1.657.087 in grants to patient initiatives was reported by the PHARMIG member companies. Most grants (around 85% of all financial contributions) were given to initiatives in the nine fields of Oncology & Haematology, Neurology, Haemophilia, Pulmonology, Rare Diseases, Dermatology, Gastroenterology, Rheumatology, and HIV/AIDS. By far the biggest contribution to a single organisation was again given to the Austrian Haemophilia Society with € 161.516; the Austrian Crohn’s Colitis Association came in second with € 118.855. Following a significant decline in 2016, the declared total has risen by almost +45%. The number of disclosures doubled compared to 2014 (2014: 24 out of 115 PHARMIG companies declared donations to patient initiatives, 2018: 49 out of 113).

Conclusions: The pharmaceutical companies in Austria have taken an important first step towards greater transparency, but a second step, an improved implementation needs to follow. To further advance transparency, consistent monitoring by a critical public is required.