Health advocacy organizations and the lack of transparency

by Patrick Fitzgerald, MPH

Health advocacy organizations (HAOs) are typically organizations of prominent, trusted stakeholders who conduct campaigns to promote disease awareness, update members to new diagnostic tests and drugs, facilitate physician referrals, deliver health care services, and advocate for policies believed to be in their member’s best interest.

They range in size from national organizations with many thousands of members focused on widespread disease to smaller entities with a more narrowed focus.

A recent study in the American Journal of Public Health looked at the Lilly Grant Registry (of drug-maker Eli Lilly) – a record of the company’s grant awards – to specifically investigate grants provided to health advocacy organizations. This information was used: (1) to compare Eli Lilly’s grant giving and marketing goals, (2) to identify those HAOs receiving said grants, and (3) to examine the HAOs’ websites to discover their funding disclosure practices.

Grants from Eli Lilly to health advocacy organizations totaled $3,211,144 (10.2 percent of its total grant giving) with 94 percent of this given to HAOs active in Lilly’s three main therapeutic areas of interest (neuroscience, endocrinology, and oncology; representing 45, 31 and 11 percent of total sales respectively).  A break down of Eli Lilly awards to HAOs showed that 66 percent of grants went to 114 HAOs involved in neuroscience, 21 percent to 17 oncology HAOs and 8 percent to 6 HAOs involved with endocrinology.

Of 161 health advocacy organizations examined, only 25 percent of health advocacy organizations acknowledged Lilly funding anywhere on their website.  Eighteen percent acknowledged Lilly in their 2007 annual report, one percent mentioned Lilly on a corporate sponsor’s page, and ten percent reported Lilly as the sponsor of a grant event recorded in the Lilly Grant Registry. This reporting varied significantly by therapeutic area of interest with HAOs involved in endocrinology and oncology disclosing at a higher rate than those involved in neuroscience.

Policy makers and the public at large need to remember that bias cannot be removed from a system with so many competing ambitions.  With every decision it is important to work through the evidence and agendas to consider the source of information as a potential source of bias. But exposing sources of bias requires transparency.

The evidence suggests that Eli Lilly targeted grants to specific health advocacy organizations in order to drive the profits of its commercial interests.  Yet these HAOs, through their lack of disclosure, withheld basic information regarding the funding stream powering their policy agendas.

Health advocacy organizations are entities that hold significant influence in the realm of health policy, on both a national and local level; they directly and indirectly affect how health care is delivered to patients.  This lack of transparency is concerning because neither policy makers, nor the public, can readily discern the relationship between an HAO and its grant sponsors to determine potential conflicts of interest between improving health and maximizing profits.  By extension, policy makers and the public are not fully aware of the source of information supplied to them.  Transparency by health advocacy organizations represents a vital component of the information that informs policy makers; this is akin to the transparency necessary between physicians and industry. It must be clear that the decisions of policy makers are in the best interest of the public, and not subverted to maximize the profits of private institutions.

Patrick Fitzgerald is a Project Manager at the Center for Chronic Disease Outcomes Research and blogs at Policy Prescriptions.

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