Consumer Groups Shut Out of Comparative Effectiveness Board

The Government Accountability Office last week appointed two “faster cures” patient advocates and a former insurance company executive now on the AARP board to the three slots reserved for patient and consumer representatives on the Patient-Centered Outcomes Research Institute board, which will oversee comparative effectiveness research under health care reform.

The reform legislation passed last March gave GAO the job of appointing the 17 public members, which also includes five representatives of private payers, five physicians, and three industry representatives (one each for drugs, devices and diagnostic manufacturers). A full list can be found here.

The three “patient and consumer” representatives are:

  • Ellen Sigal, chair, Friends of Cancer Research.

Sigal is an outspoken advocate for more money for cancer research. Her board is comprised largely of fellow executives in the research community, including staff from the American Cancer Society, Research America!, and the American Society of Clinical Oncology, which represents cancer docs. She serves on numerous non-profit boards, including the Reagan-Udall Foundation set up by the Food and Drug Administration to expedite drug development; and has served on numerous Institute of Medicine panels investigating new ways of conducting cancer research that can lead to faster access to new medicines.

  • Andrew Imparato, CEO, American Association of People with Disabilities.

The AAPD is chaired by former Democratic Congressman Tony Coelho, who has appeared at recent Food and Drug Administration advisory committee meetings to advocate for approval of new drugs. Imparato, an able executive that has built AAPD into a $2.5 million-a-year organization with support from a broad cross-section of corporate America, including numerous drug companies, is descibed on the group’s website as having a “perspective that is informed by his personal experience with bipolar disorder.” He’s a member of numerous non-profit boards, and one group listed by the GAO as Advance Class, Inc., which doesn’t have a website, according to the Google search engine.

  • Allen Douma, MD, head of a group called Empower LLC and a member of the AARP board.

A quick Google search turns up nothing on Empower LLC. Douma was recently appointed to the AARP board and serves on its social impact committee and its insurance trust board. He previously served as an assistant health secretary in Oregon, which has done pioneering work on use of comparative effectiveness research in its Medicaid program. His background includes stints as medical director for Hartford and Travelers Insurance Cos., and director of Health Education for the American Medical Association. The GAO reports that Douma has investments between $10,001 and $50,000 in MetLife, Inc.

Ironically, the most powerful consumer advocate on the board may well be one of the physician representatives. Harlan Krumholz of Yale University Medical School, who was recently subject of a laudatory profile by Matthew Herper on the Forbes Magazine website, has been a strong voice for developing better evidence about cardiovascular drugs and devices, and using that information to inform clinical practice. Krumholz frequently consults with the private sector and is secretary of CV Outcomes, Inc. , director and consultant to Lifetech Development Partners LC, consultant to C2N Diagnostics LLC, and chair of the Scientific Advisory Board of UnitedHealthcare, according to the GAO.

Merrill Goozner has been writing about economics and health care for many years. The former chief economics
correspondent for the Chicago Tribune, Merrill has written for a long list of publications including the New York Times, The American Prospect, The Washington Post and The Fiscal Times. You can read more pieces by Merrill at  GoozNews, where this post first appeared.

4 replies »

  1. Well our health care system is not a humanistic health care system its a feudalistic and capitalistic system thats been slouching toward bethlehem for too long the falconer doesnt hear the falcons-theyre just their for the sport.