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**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

Sheila Rothman, Mailman School of Public Health, Columbia University

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  • 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
  • 4. Advocacy Organizations and Civil Society
    Independent not-for-profit organizations are the core of civil society
    Stand apart from both the marketplace and the state
    Represent the diverse public concerns
    Operate in all spheres
    Sheila M. Rothman
    4
    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
  • 11. History of Health Advocacy Organizations
    Social and Economic Agenda:
    Advocated for legislation and regulations to eliminate social and economic conditions linked to the targeted disease:
    • Tenement House Reform
    • 12. Child Labor Laws
    • 13. Parks and Playgrounds
    Sheila M. Rothman
    7
    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
  • 15. The New Mission of Health Advocacy Organizations
    Expand government funding for research and services
    Promote:
    • Unrestricted access to drugs, devices, and diagnostic tools
    • 16. Open Formularies
    • 17. Elimination of “fail first” policies
    • 18. Easy access to unproven therapies
    • 19. Branded drugs over generics
    Sheila M. Rothman
    9
    Transparency in Consumer Advocacy Organizations Funding
  • 20. Health Advocacy Organizations as powerful stakeholders
    Effectively communicate unmet patient needs
    Put an intimate face on advocacy
    Train members to “Tell their stories” to
    • State and federal officials
    • 21. The media
    • 22. Friends and neighbors
    Sheila M. Rothman
    10
    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
  • 27. An Analysis of Disclosure Practices
    Some pharmaceutical companies place their Grant Registries online
    It is now possible to study the financial relationship between industry and health advocacy organizations
    The registries provide:
    • The names of the requestors
    • 28. The grant event
    • 29. The exact sum
    Sheila 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

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