**Rothman-Transparency in Consumer Advocacy Organization Funding: The Case of Health Advocacy Organizations

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Sheila Rothman, Mailman School of Public Health, Columbia University

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**Rothman-Transparency in Consumer Advocacy Organization Funding: The Case of Health Advocacy Organizations

  1. 1. Transparency in Consumer Advocacy Organizations Funding:The Case of Health Advocacy Organizations<br />Sheila M. Rothman, Ph.D.<br />Professor of Sociomedical Sciences<br />Mailman School of Public Health, Columbia University<br />2011 Annual Meeting<br />Consumers United for Evidence-Based Health Care<br />August 12, 2011<br />
  2. 2. Financial Conflicts of Interest<br />No financial conflicts to disclose.<br /> <br /> <br />Served as a consultant to the Office of the Attorney General of the State of Texas in litigation against Johnson & Johnson related to Risperidone.<br />Sheila M. Rothman<br />Transparency in Consumer Advocacy Organizations Funding<br />2<br />
  3. 3. Overview<br />Advocacy Organizations as essential components of civil society<br />The history and mission of Health Advocacy Organizations<br />The Record of Financial Disclosure<br />Recommendations<br />Sheila M. Rothman<br />3<br />Transparency in Consumer Advocacy Organizations Funding<br />
  4. 4. Advocacy Organizations and Civil Society<br />Independent not-for-profit organizations are the core of civil society<br />Stand apart from both the marketplace and the state<br />Represent the diverse public concerns<br />Operate in all spheres<br /><ul><li>Environment
  5. 5. Civil and Human Rights
  6. 6. Education
  7. 7. Consumer Rights
  8. 8. Health</li></ul>Sheila M. Rothman<br />4<br />Transparency in Consumer Advocacy Organizations Funding<br />
  9. 9. History of Health Advocacy Organizations<br />Established in the first decades of the 20th century<br />Organized by concerned citizens to improve the health of their communities<br />Funded by Philanthropists<br />Mission equated with the public interest<br />Altruistic Mission made Health Advocacy Organizations highly trusted groups<br />Sheila M. Rothman<br />5<br />Transparency in Consumer Advocacy Organizations Funding<br />
  10. 10. History of Health Advocacy Organizations<br />Medical Agenda: Tuberculosis as the Paradigm<br />Educate the public about disease and its symptoms<br />Raise money to establish disease-specific hospitals<br />Fund and advance scientific knowledge<br />Sheila M. Rothman<br />6<br />Transparency in Consumer Advocacy Organizations Funding<br />
  11. 11. History of Health Advocacy Organizations<br />Social and Economic Agenda:<br />Advocated for legislation and regulations to eliminate social and economic conditions linked to the targeted disease:<br /><ul><li>Tenement House Reform
  12. 12. Child Labor Laws
  13. 13. Parks and Playgrounds</li></ul>Sheila M. Rothman<br />7<br />Transparency in Consumer Advocacy Organizations Funding<br />
  14. 14. Transforming the Health Advocacy Leadership and Mission<br />AIDS advocacy became the model for HAOs for Breast Cancer, Epilepsy, Mental Illness<br />Promoted establishment of identity- based advocacy organization<br />Patients became leaders and advocates<br />The Personal became Political<br />Sheila M. Rothman<br />8<br />Transparency in Consumer Advocacy Organizations Funding<br />
  15. 15. The New Mission of Health Advocacy Organizations<br />Expand government funding for research and services<br />Promote:<br /><ul><li>Unrestricted access to drugs, devices, and diagnostic tools
  16. 16. Open Formularies
  17. 17. Elimination of “fail first” policies
  18. 18. Easy access to unproven therapies
  19. 19. Branded drugs over generics</li></ul>Sheila M. Rothman<br />9<br />Transparency in Consumer Advocacy Organizations Funding<br />
  20. 20. Health Advocacy Organizations as powerful stakeholders<br />Effectively communicate unmet patient needs<br />Put an intimate face on advocacy<br />Train members to “Tell their stories” to<br /><ul><li>State and federal officials
  21. 21. The media
  22. 22. Friends and neighbors</li></ul>Sheila M. Rothman<br />10<br />Transparency in Consumer Advocacy Organizations Funding<br />
  23. 23. The Public Perception of Health Advocacy Organizations<br />Viewed as worthy causes - advocate for vulnerable groups<br />Objective and unbiased<br />Citizens donate money to them<br />Citizens participate in their events<br />Sheila M. Rothman<br />11<br />Transparency in Consumer Advocacy Organizations Funding<br />
  24. 24. Pharmaceutical Industry and Advocacy Organizations <br />Sheila M. Rothman<br />12<br />Industry attracted by:<br />Effectiveness of advocacy organizations’ strategy<br />Their ability to put a intimate face on an illness<br />“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.”<br />Transparency in Consumer Advocacy Organizations Funding<br />
  25. 25. The Joint Agenda<br />Pharmaceutical Industry also favor<br />Open Formularies<br />Elimination of “fail first” policies<br />Broad access to unproven therapies<br />Branded drugs over generics<br />Sheila M. Rothman<br />13<br />Transparency in Consumer Advocacy Organizations Funding<br />
  26. 26. Advocacy Organizations and industry<br />Advocacy Organizations recognize common interests<br />Accept industry donations<br />Request industry grants<br />Promote industry products<br />Rarely disclose industry funding<br />Sheila M. Rothman<br />14<br />Transparency in Consumer Advocacy Organizations Funding<br />
  27. 27. An Analysis of Disclosure Practices<br />Some pharmaceutical companies place their Grant Registries online<br />It is now possible to study the financial relationship between industry and health advocacy organizations<br />The registries provide:<br /><ul><li>The names of the requestors
  28. 28. The grant event
  29. 29. The exact sum</li></ul>Sheila M. Rothman<br />15<br />Transparency in Consumer Advocacy Organizations Funding<br />
  30. 30. Example of Drug Company DataThe Lilly Grant Registry<br />Sheila M. Rothman<br />16<br />Transparency in Consumer Advocacy Organizations Funding<br />
  31. 31. Examination of the Grant Registry of Eli Lilly <br />Using the data based on Eli Lilly<br />First: <br />Identified all 181 HAOs that received grants<br />The purpose of the grant<br />The exact amount of the grant<br />Second: <br />Identified the websites of the 181 Health Advocacy Organizations <br />Searched the sites to learn: Did they acknowledge Lilly’s funding? <br />Sheila M. Rothman<br />17<br />Transparency in Consumer Advocacy Organizations Funding<br />
  32. 32. Findings<br />Only 25% of the organizations acknowledged the pharmaceutical company on their website<br />Only 10% acknowledged the purpose of the grant<br />None of the 181 organizations acknowledged the sum<br />“It is impossible for policy makers or the public to know about the financial relationships between the organizations and industry.”<br />- 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.<br />Sheila M. Rothman<br />18<br />Transparency in Consumer Advocacy Organizations Funding<br />
  33. 33. Health Advocacy Organizations Acknowledgements of Lilly Funding <br />Sheila M. Rothman<br />19<br />TABLE 1—Health Advocacy Organizations (HAOs) That Acknowledged Lilly Funding on Their Web Sites, by Therapeutic Area: <br />United States, 2007 <br />Lilly Ackn. Lilly Ackn. Lilly Ackn. Lilly Ackn. Lilly Grant <br /> Anywhere, in 2007 in Corp. as Grant Amount<br /> % (no.) Annual Sponsors Event Reported<br /> Report, page Sponsor % (no.) <br />HAO Therapeutic Area Number % (no.) % (no.) % (no.) ________ <br />Neurosciences 114 18 (20) 11 (13) 2 (2) 7 (8) 1 (1) <br />Endocrinology 17 59 (10) 47 (8) 0 (0) 29 (5) 0 (0) <br />Oncology 6 67 (4) 50 (3) 0 (0) 17 (1) 0 (0) <br />Miscellaneous health 24 25 (6) 21 (5) 0 (0) 8 (2) 0 (0) <br />Total 161 25 (40) 18 (29) 1 (2) 10 (16) 0.6 (1) <br />(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. <br />Transparency in Consumer Advocacy Organizations Funding<br />
  34. 34. Recommendations <br />Health Advocacy Organizations need to be more meticulous about disclosing corporate gifts and grants<br />New health care reform requires disclosure in 2012 of physician payments. Act should be amended to require disclosure by Health Advocacy Organizations<br />Absent disclosure the public cannot evaluate possible conflicts of interest or biases in HAO advocacy<br />Sheila M. Rothman<br />20<br />Transparency in Consumer Advocacy Organizations Funding<br />
  35. 35. Going Forward <br />Sheila M. Rothman<br />21<br /> <br />Sunshine is the best disinfectant<br />Disclosure is essential<br />Recognize that Health Advocacy Organizations now represent special interests<br />Transparency in Consumer Advocacy Organizations Funding<br />

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