Pharmaceutical Industry Support of US Patient Advocacy Organizations: An International Context

Abstract

Objectives. To examine whether the share of pharmaceutical industry funds allocated to patient advocacy organizations (PAOs) is disproportionately large in the United States relative to other industrialized countries and to compare pharmaceutical companies’ disclosure practices across industrialized countries. Methods. We examined funding of PAOs among the 10 largest pharmaceutical companies in 2016. We compared funding allocated to organizations across 8 large industrialized countries and pharmaceutical companies’ disclosure practices in each country. Results. Only 6 of the 10 largest pharmaceutical companies disclosed their financial transactions with PAOs in the United States. All 10 companies disclosed transactions in France, Germany, and the United Kingdom, with varying levels of disclosure in other countries. In 2016, the 6 companies that disclosed transactions in the United States allocated 74% of their patient advocacy funding ($88 million) in the United States. Conclusions. The disproportionate funding of US PAOs in the absence of any disclosure requirements suggests that the United States should consider adoption of regulatory actions to enhance the transparency of relationships between the pharmaceutical industry and PAOs, and to ensure the integrity of public health decision-making.

Five years of pharmaceutical industry funding of patient organisations in Sweden: Cross-sectional study of companies, patient organisations and drugs

“…This study's finding of close relations between patient organisations and pharmaceutical companies is consistent with what has been reported from other countries, including the UK [4,26], United States [13,14,17,28,35], Australia [11,27], Canada [12], Italy [36] and Finland [29]. Between 2014 and 2018, 77 Swedish patient organisations were reported to receive support from 46 companies, involving 1,337 payments with a cumulative value of roughly €6.4m.…”

“…Prior research has debated the advantages and shortcomings of industry self-regulation and government regulation for ensuring public disclosure of payments to patient organisations. For example, Kang et al [28] suggested implementing a legal disclosure requirement in the United States modelled on the Physician Payments Sunshine Act, rather than self-regulation, to ensure centralised payment reporting by companies because government regulation is better at compelling universal compliance. However, the Swedish example shows that a centralised database can in principle be achieved with self-regulation.…”

“…As a result of this and similar transparency initiatives elsewhere in the world, there has been a spur in research on pharmaceutical company funding of patient organisations in the United Kingdom (UK) [4,22,26], Australia [27] and United States [28] using industry disclosure data. Industry disclosures have clear advantages over other data sources, such as surveys of patient organisations [14,29] or their websites [30,31], due to their greater coverage and standardisation [26].…”

“…Furthermore, companies predominantly fund organisations in commercially high-profile areas, such as cancer and diabetes, indicating mercantile rather than philanthropically motivated support [26]. However, only a few countries have been surveyed making generalisations problematic, especially since the pattern of patient organisations' relations with industry may vary between countries [28].…”

Under-reported relationship: a comparative study of pharmaceutical industry and patient organisation payment disclosures in the UK (2012–2016)

“…2 Although industry funding may benefit patient organisations, 3 4 it raises concerns about potential conflict of interests (COIs) compromising patient organisations' independence and credibility. [5][6][7][8][9][10] Both donors 11 and recipients 4 assert that any COIs can be managed by careful disclosure of funding. On the donor side, since 2012 members of pharmaceutical industry trade groups in European countries, 12 such as the Association of the British Pharmaceutical Industry (ABPI), have disclosed payments to patient organisations annually on each company's website, including their monetary value and purpose.…”