Study finds US-based patient advocacy organizations have received most donations of pharmaceuticals

A new study by researchers at the Johns Hopkins Bloomberg School of Public Health found that US-based patient advocacy organizations had received a disproportionate amount of contributions from the world's 10 largest pharmaceutical companies in the United States. 2016.

The study badessed contributions to patient advocacy groups in seven countries and in the UK and found that US-based patient advocacy organizations received 74% of total contributions in 2016, or about 88 millions of dollars.

Patient rights organizations are non-profit groups that focus on specific medical conditions. They are found in almost all industrialized countries and seek to raise public awareness, lobby for research and treatment options, as well as provide education to patients and caregivers, as well as support and support services.

The study was published online on February 21, 2019 in the American Journal of Public Health.

"Patient Advocacy Groups play an important role when they testify before Congress, the Food and Drug Administration, the Centers for Medicare & Medicaid Services and other government agencies," said the spokesman. – author, Gerard Anderson, PhD, professor at the Bloomberg School department. health policy and management. "It is important for policymakers to understand the sources of funding for these organizations."

The report reveals a mosaic of levels of disclosure among countries. Only six out of ten pharmaceutical companies disclosed their cash donations to US-based patient advocacy organizations in 2016. This shortcoming suggests that the total amount of contributions to patient groups based in the United States was even higher, four companies did not disclose their US contributions.

On the other hand, the study revealed that the 10 companies communicated their financial transactions in 2016 to patient advocacy organizations in France, Germany and the United Kingdom, which encourage or require such disclosure.

The authors note that the results underscore the importance of transparency in light of the growing role of patient advocacy groups, particularly in the United States, and recommend moving forward toward increased, voluntary disclosure. or regulatory.

"Patient advocacy groups have grown exponentially in the last 10 years, but the scale of funding for the pharmaceutical industry across countries has not yet been measured," said So-Yeon Kang, MPH, MBA, lead author of the study and research badociate at Bloomberg. Department of Policies and School Health Management. "Patient advocacy organizations are supposed to represent the interests of their constituents.Transparency is essential to avoid conflicts of interest."

For their study, the researchers identified the 10 largest pharmaceutical companies in the world based on their overall revenues in 2016: Pfizer, Novartis, Roche, Sanofi, Merck, AbbVie, Amgen, Gilead, Janssen and GlaxoSmithKline. Together, they accounted for 41% of the revenues of the pharmaceutical industry that year. The authors of the study then sought information on the contributions of these 10 companies to patient advocacy groups based in Canada, France, Germany, Italy, Japan, Spain, the United Kingdom. and in the United States. The researchers collected financial information on websites -facing documentation, such as annual reports.

In France, Germany and the UK, where the 10 pharmaceutical companies have disclosed their financial contributions to patient groups, the researchers noted that in addition to robust regulatory frameworks, disclosure information was easily accessible and that the content was consistent.

Other countries, including the United States, had varying amounts of information disclosed. Researchers reported encountering several obstacles in collecting data in the United States, including different report styles and mixed information badociated with different types of grants.

The six companies that disclosed their contributions to US groups paid out $ 120 million in patient advocacy funds in the study countries – $ 88 million to US groups and $ 32 million to research groups. groups of the remaining six countries and the United Kingdom.

Researchers also wanted to understand the relationship between patient advocacy groups and the pharmaceutical market in the respective countries. Researchers have found no badociation between corporate contributions to patient advocacy groups of a country and population, pharmaceutical revenues or the country's GDP.

"If financial support to patient advocacy organizations is really about patient education, you would expect the funding to be the same in each country," said Mr. Anderson. "This badysis shows that there is no correlation and that something more than the education of patients influences the level of support of patient advocacy organizations in a country."

The disproportionate amount of funding for US patient advocacy organizations and unregulated financial information underscore the importance of establishing reporting guidelines.

"Legislative measures, such as the expansion of the Physician Payment Sunshine Act, would ensure universal disclosure," said Kang. "But, as an intermediary, the sector should consider adopting a voluntary disclosure requirement at the level of professional badociations – it already exists in Europe – why not in the United States?"

According to the authors, increased transparency would help resolve potential conflicts of interest related to the support of the pharmaceutical industry. "The United States has one of the most robust drug regulatory processes," Anderson says. "It is often the first country to adopt prescription drugs and therefore has a significant influence on the performance of a product in a global market.The regulation is important because these groups can be influenced by the influence of the drug. the money they receive from pharmaceutical companies. "