Patient Groups
 |
This article is part of the Center for Media & Democracy's spotlight on front groups and corporate spin. |
Patient Groups, or patient-advocacy groups, are organizations which claim to represent the interests of patients suffering various physical and mental illnesses. Many are funded, and in some case staffed, by the pharmaceutical companies which sell treatments for the relevant illnesses.
"The American Diabetes Association, a leading patient health group, privately enlisted an Eli Lilly & Co. executive to chart its growth strategy and write its slogan. The National Alliance on Mental Illness, an outspoken patient advocate, lobbies for treatment programs that also benefit its drug-company donors. ... Although patients seldom know it, many patient groups and drug companies maintain close, multimillion-dollar relationships while disclosing limited or no details about the ties," reports Thomas Ginsberg, of the Philadelphiia Inquirer. [1]
In some cases, companies have "loaned" the services of their executives to advise or even lead patient groups. Ginsberg's investigation found that "the groups rarely disclose such ties when commenting or lobbying about donors' drugs. They also tend to be slower to publicize treatment problems than breakthroughs. And few openly questioned drug prices." [2]
Characteristics of patient-advocacy front groups
Patient advocacy groups that serve as pharmaceutical fronts may display some or all of the following characteristics.
They may:
- Derive most, if not all of their revenue from pharmaceutical manufacturers;
- Lobby for treatment programs that also benefit their drug-company donors;
- Tend to be slower to publicize treatment problems than breakthroughs;
- Tend not to openly question drug prices;
- Tend to encourage patients to stay on their medications and offer programs to help patients stay on their medications, and push insurers to pay for it;
- Funding from drug companies to the organization usually comes from the drug makers' marketing or sales divisions, not charity offices;
- Fail to adequately discuss, or minimize discussion of adverse drug side effects of drugs like brain damage or suicide;
- Fail to lobby for more or additional safety research due to the potential for cutoff of their pharma funding[1]
- Focus on drugs as the preferred treatment, and neglect issues like housing and income support, vocational training, rehabilitation, and empowerment, all of which can play a role in recovery from mental illness.[2]
Truly independent patient advocacy groups are likely to be controlled by volunteers who actually take mental health drugs themselves. True grassroots patient advocacy groups are likely to have "fire walls" against donor influence, like policies against accepting funding from drug companies.
SourceWatch Resources
- Health Care
- Midwest Heart Foundation
- Doctor Run Charities
- Patient Groups/Australia
- Patient Groups/Europe
- Patient Groups/International
- Patient Groups/UK
- Patient Groups/US
- Patient Groups/Canada
External links
- Dr Orla O'Donovan, "Time to weed out the astroturf from the grassroots? Exploring the implications of pharmaceutical industry funding of patients’ advocacy organisations", Paper presented at Concepts of the Third Sector: The European Debate , ISTR/EMES Conference, Paris , 27-29 April 2005.
- Dr Orla O'Donovan, "Current Research", Accessed July 2006.
- Thomas Ginsberg, "Donations tie drug firms and nonprofits: Many patient groups reveal few, if any, details on relationships with pharmaceutical donors", Philadelphia Inquirer, May 28, 2006.
- Reed Abelson, "Charities Tied to Doctors Get Drug Industry Gifts", New York Times, June 28, 2006.
- Jo Revill, "Cancer drug firm's PR trip sparks a row: MPs and charity officials defend paid-for visit to see 'gold standard' treatment at French hospital", The Observer, July 2, 2006.
- Douglas Ball, Klara Tisocki and Andrew Herxheimer, "Advertising and disclosure of funding on patient organisation websites: a cross-sectional survey", BMC Public Health, August 3, 2006.
- David Miller 'This campaign brought to you by...' Spinwatch, 29 October 2006.
