Patient group sponsorship and transparency criticised
pharmafile | August 16, 2010 | News story | Sales and Marketing | EMA, ethics, patient groups, transparency
High rates of sponsorship from pharma groups for patient groups have been criticised in a new report.
The report from transparency activists Health Action International also says Europe’s medicines regulator the EMA has not enforcing its own rules on financial transparency.
The report found that 15 of the 23 patients’ organisations working with the agency received corporate sponsorship between 2006 and 2008, while only seven did not.
The report found that on average, 57% of the annual budget from patient groups came from corporate sponsorship in 2008. In total, the surveyed groups received €321,230 in the period, which was a rise of 10% on data collected from 2006.
The European Federation of Neurological Associations (EFNA) had the highest sponsorship rate in the survey in 2008, receiving 91% of its total annual budget from corporate sponsorship.
HAI concluded that these were alarming statistics, as such groups can have an impact on how new drugs are perceived by patients.
The groups have an advisory role in the regulator’s decision-making process, which the HAI believes raises questions of conflict of interest.
Need for greater transparency
In 2005 the Agency established clear rules requiring financial transparency from patient groups, but the HAI found these were not being enforced with a monitoring procedure or any penalties for non-compliance.
Only six of the 23 eligible organisations were found to meet the EMA’s financial transparency criteria for at least one of the years examined – no financial data was found for one of the groups.
“The guidelines were introduced in 2005,” the report stated, “but by March 2010, we were still unable to locate the income sources for 20 of the 23 eligible groups reported online. Despite persistent non-reporting, all the organisations were invited to participate in the EMA annual meeting with eligible groups in December 2009.”
The added lack of transparency will only bring further disrepute to the patient groups, the EMA and the pharma industry.
The report concluded that: “The lack of a uniform and detailed reporting system hinders complete public disclosure of the nature, and extent of, corporate sponsorship of these organisations.
Ben Adams
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