IMAP is now exploring the relationship between health advocacy organizations (HAOs) and the pharmaceutical industry. HAOs are a crucial but relatively unknown participant in health policy. Most HAOs target specific diseases and disabilities, but some are concerned as well with general health.
HAOs represent the voice of consumers and patients and are thought to give unbiased opinions. They command a great deal of public trust and have the privilege of self-regulation.
HAOs are also very energetic and influential in the area of health policy. They frequently lobby before state legislatures and Congress, advocating for an array of treatments and services that they believe will improve the well-being of their members. HAOs may lobby alone or as members of alliances with professional medical associations. The organizations generally have been successful in meeting their goals; increasing research funding and services for specific diseases (AIDS, breast cancer) and in reducing stigma (mental illness, disabilities).
Most important, HAOs frequently partner with pharmaceutical companies to rally against formularies and Evidence-Based medicine. IMAP is investigating how HAOs disclose pharmaceutical grants to the public. For example, do they disclose the sponsor of their grants, the reason for the grant and the amount they received on either on their website, in annual reports or in tax returns (990s)? Do the organizations have conflict of interest policies and do they disclose the policies to the public? In brief, given the significance of HAOs, to what degree are their relationships with industry transparent?