**Rothman-Transparency in Consumer Advocacy Organization Funding: The Case of Health Advocacy Organizations
1. Transparency in Consumer Advocacy Organizations Funding:The Case of Health Advocacy Organizations Sheila M. Rothman, Ph.D. Professor of Sociomedical Sciences Mailman School of Public Health, Columbia University 2011 Annual Meeting Consumers United for Evidence-Based Health Care August 12, 2011
2. Financial Conflicts of Interest No financial conflicts to disclose. Served as a consultant to the Office of the Attorney General of the State of Texas in litigation against Johnson & Johnson related to Risperidone. Sheila M. Rothman Transparency in Consumer Advocacy Organizations Funding 2
3. Overview Advocacy Organizations as essential components of civil society The history and mission of Health Advocacy Organizations The Record of Financial Disclosure Recommendations Sheila M. Rothman 3 Transparency in Consumer Advocacy Organizations Funding
9. History of Health Advocacy Organizations Established in the first decades of the 20th century Organized by concerned citizens to improve the health of their communities Funded by Philanthropists Mission equated with the public interest Altruistic Mission made Health Advocacy Organizations highly trusted groups Sheila M. Rothman 5 Transparency in Consumer Advocacy Organizations Funding
10. History of Health Advocacy Organizations Medical Agenda: Tuberculosis as the Paradigm Educate the public about disease and its symptoms Raise money to establish disease-specific hospitals Fund and advance scientific knowledge Sheila M. Rothman 6 Transparency in Consumer Advocacy Organizations Funding
14. Transforming the Health Advocacy Leadership and Mission AIDS advocacy became the model for HAOs for Breast Cancer, Epilepsy, Mental Illness Promoted establishment of identity- based advocacy organization Patients became leaders and advocates The Personal became Political Sheila M. Rothman 8 Transparency in Consumer Advocacy Organizations Funding
23. The Public Perception of Health Advocacy Organizations Viewed as worthy causes - advocate for vulnerable groups Objective and unbiased Citizens donate money to them Citizens participate in their events Sheila M. Rothman 11 Transparency in Consumer Advocacy Organizations Funding
24. Pharmaceutical Industry and Advocacy Organizations Sheila M. Rothman 12 Industry attracted by: Effectiveness of advocacy organizations’ strategy Their ability to put a intimate face on an illness “There is one activity that lobbyists or public relation firms, no matter how well paid, will never be able to perform in place of advocacy groups. This is the ability to acknowledge what it actually means to be a cancer patient.” Transparency in Consumer Advocacy Organizations Funding
25. The Joint Agenda Pharmaceutical Industry also favor Open Formularies Elimination of “fail first” policies Broad access to unproven therapies Branded drugs over generics Sheila M. Rothman 13 Transparency in Consumer Advocacy Organizations Funding
26. Advocacy Organizations and industry Advocacy Organizations recognize common interests Accept industry donations Request industry grants Promote industry products Rarely disclose industry funding Sheila M. Rothman 14 Transparency in Consumer Advocacy Organizations Funding
29. The exact sumSheila M. Rothman 15 Transparency in Consumer Advocacy Organizations Funding
30. Example of Drug Company DataThe Lilly Grant Registry Sheila M. Rothman 16 Transparency in Consumer Advocacy Organizations Funding
31. Examination of the Grant Registry of Eli Lilly Using the data based on Eli Lilly First: Identified all 181 HAOs that received grants The purpose of the grant The exact amount of the grant Second: Identified the websites of the 181 Health Advocacy Organizations Searched the sites to learn: Did they acknowledge Lilly’s funding? Sheila M. Rothman 17 Transparency in Consumer Advocacy Organizations Funding
32. Findings Only 25% of the organizations acknowledged the pharmaceutical company on their website Only 10% acknowledged the purpose of the grant None of the 181 organizations acknowledged the sum “It is impossible for policy makers or the public to know about the financial relationships between the organizations and industry.” - Rothman, SM, Raveis VH, et al, “Health Advocacy Organizations and the Pharmaceutical Industry: An Analysis of Disclosure Practices,” American Journal of Public Health January 13, 2011 e1-e8. Sheila M. Rothman 18 Transparency in Consumer Advocacy Organizations Funding
33. Health Advocacy Organizations Acknowledgements of Lilly Funding Sheila M. Rothman 19 TABLE 1—Health Advocacy Organizations (HAOs) That Acknowledged Lilly Funding on Their Web Sites, by Therapeutic Area: United States, 2007 Lilly Ackn. Lilly Ackn. Lilly Ackn. Lilly Ackn. Lilly Grant Anywhere, in 2007 in Corp. as Grant Amount % (no.) Annual Sponsors Event Reported Report, page Sponsor % (no.) HAO Therapeutic Area Number % (no.) % (no.) % (no.) ________ Neurosciences 114 18 (20) 11 (13) 2 (2) 7 (8) 1 (1) Endocrinology 17 59 (10) 47 (8) 0 (0) 29 (5) 0 (0) Oncology 6 67 (4) 50 (3) 0 (0) 17 (1) 0 (0) Miscellaneous health 24 25 (6) 21 (5) 0 (0) 8 (2) 0 (0) Total 161 25 (40) 18 (29) 1 (2) 10 (16) 0.6 (1) (a) The percentage of HAOs acknowledging Lilly anywhere is less than the sum of the composite variable because some HAOs acknowledged Lilly in multiple places on their Web site. Transparency in Consumer Advocacy Organizations Funding
34. Recommendations Health Advocacy Organizations need to be more meticulous about disclosing corporate gifts and grants New health care reform requires disclosure in 2012 of physician payments. Act should be amended to require disclosure by Health Advocacy Organizations Absent disclosure the public cannot evaluate possible conflicts of interest or biases in HAO advocacy Sheila M. Rothman 20 Transparency in Consumer Advocacy Organizations Funding
35. Going Forward Sheila M. Rothman 21 Sunshine is the best disinfectant Disclosure is essential Recognize that Health Advocacy Organizations now represent special interests Transparency in Consumer Advocacy Organizations Funding
