Patient or Pharmaceutical Company Advocates?

We have previously blogged (here and here) about ties among pharmaceutical companies and patient advocacy groups.

The Boston Globe just reported how a patient advocacy group was entangled with the pharmaceutical industry. The story was about Elzora K Brown, founder of the Breast Cancer Resource Committee:

Elzora K. Brown could stand before a microphone and calmly describe the swath of devastation that cancer has cut through five generations of her family.

"My own story is replicated in the lives of high-risk families across the globe," Brown told an audience of Food and Drug Administration advisers considering a controversial application to allow wider sales of silicon gel breast implants....

Brown's message about the need to reduce disproportionately high mortality rates among African-American women, like herself, resonated whether she was testifying before the FDA, addressing the nation's mayors, or speaking with members of Congress, where she was a staff assistant to former US House Majority Leader Jim Wright.

Through speaking engagements for the Breast Cancer Resource Committee, a patient-advocacy group Brown founded in 1989 , she highlighted the benefits of early cancer screening, offered a support group for African-American women, and called attention to the need for diversity among participants in clinical trials for new treatments.

Patient advocates like Brown regularly testify at FDA public hearings, packing an emotional punch as advisers vote on controversial drug and device approvals.

Although Brown's committee billed itself as an organization for patient advocacy, it was heavily supported by pharmaceutical company funds, and Brown herself made quite a nice living running it.

What few in Brown's audiences knew is that the patient advocate personally profited from her cancer-survival message, accepting funding from major pharmaceutical companies that produce cancer treatments, according to tax records.

'As a survivor, I want a healthy life after breast cancer, so the long-term side effects of treatment must figure into the treatment decision,' Brown said in a press release touting Ellence (epirubicin), a breast cancer drug that showed lower heart risk. The release, distributed by Pfizer Inc., did not disclose the funding that Brown's group received that year from the drug giant.

From 1996 to 2004 , the years for which Internal Revenue Service records are available, the Breast Cancer Resource Committee raised about $3.4 million from mostly corporate donors, including hundreds of thousands of dollars from such drug firms as Amgen Inc. , AstraZeneca Pharmaceuticals LP , GlaxoSmithKline PLC, and Pfizer Inc. As her nonprofit's coffers swelled, Brown's salary jumped from $40,100 to $162,500 --roughly one-third of every dollar raised. During that time, the group paid up to $2,600 a month for a four-story Washington, D.C., townhouse, assessed at $788,510 , where Brown lived and worked. She also made liberal use of the committee's American Express card for 'incidental, personal expenses,' according to tax records, leaving the balance unpaid.

The nonprofit's accountant, James Dunn , of White Hall, Md ., declined to respond to questions about liens the IRS filed against Brown in 2003 , which allege she underpaid taxes by $179,257 from 1997 to 2002.

Brown's highest salary was in 2002 , when she was paid $162,500 and the organization raised $554,993 . Brown's salary would have ranked her among the highest-paid chief executives for nonprofit advocacy groups of that size, according to a 2005 compensation survey of 1,660 nonprofits. It compares with a median salary of $72,000 paid to chief executives of nonprofit advocacy organizations with annual revenue from $500,000 to $1 million , according to Abbott, Langer & Associates Inc. , a firm that conducts salary surveys.

In 2002 , Brown also was reimbursed $37,246 for expenses and tallied $2,682 in personal charges on the committee's American Express card, according to the IRS filing. By 2004 , that unpaid card balance was $4,414.

The behavior of some groups ostensibly advocating for patients has drawn criticism.

Public Citizen's Peter Lurie , who testifies frequently before FDA panels, noticed a shift as public hearings 'were becoming contaminated by people who didn't represent the public in any way. They represented particular moneyed interests.' Lurie, deputy director of the consumer advocacy organization's health research group, said, 'It's a fair question: Who represents patients and how they come to call themselves' patient representatives?

The Globe interviewed others who were specifically critical of Brown.

'In a vacuum, Elzora Brown's salary is, arguably, not outrageous,' said Thomas A. McLaughlin , a consultant at Grant Thornton LLP and author of 'Streetsmart Financial Basics for Nonprofit Managers,' which coaches nonprofit leaders on how to read and use financial data. 'What is far less defensible is the fact that she is paid nearly one-third of every dollar that comes through the door.'

'It's looking like this is her own piggy bank,' said Daniel Borochoff , president of the American Institute of Philanthropy , a charity watchdog based in Chicago. 'You need to separate business and personal expenses; that's a pretty common principle.'

When patient advocacy groups are heavily funded by pharmaceutical companies that make products likely to be used by the patients the groups advocate for, and when the leaders of these groups are very well recompensed out of these funds, one wonders whether the groups' allegiance are first with patients or with their pharmaceutical company sponsors. At least they should disclose their sources of support and let their audience decide for themselves.