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Drug firms' funding of advocates often escapes government scrutiny; Many patient groups depend on it, raising tricky ethical questions
by Diedtra Henderson, Boston Globe (March 18, 2007)

WASHINGTON - 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. Her great-grandmother, grandmother, mother, three sisters, and three nieces had breast cancer. And, at age 31, Brown was diagnosed with the same kind of cancer.

"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, "families who every single day quietly and patiently confront the ravages of breast cancer with far more courage and fortitude than I could ever muster and with far fewer resources than I have at my own disposal."

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.

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.

Brown, 57, wears a wig to conceal graying hair slowly growing back after she successfully fended off a second cancer; last June she underwent her final chemotherapy treatment for ovarian cancer. 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. The efforts earned her dozens of awards, including one from the Washington, D.C., mayor for community service, and a presidential appointment to the National Cancer Advisory Board.

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

Congress has homed in on examples of excessive compensation to managers of some nonprofits that underwrite what Senator Charles E. Grassley, Republican of Iowa, has derided as "champagne lifestyles." And others have targeted conflicts of interest that taint medical research and creep into FDA advisory panels. But little attention has been paid to smaller nonprofits, especially patient groups that are largely funded by the drug industry.

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?

In 221 advisory committee meetings scrutinized, 32 of 44 speakers representing patients said they had received funding from a company that would be affected by the FDA's decision, according to a recent journal article that Lurie coauthored about conflicts of interest on FDA advisory panels.

While the FDA scours its advisers' backgrounds for such information, the agency does not require disclosures when patients testify.

Nor do drug makers highlight such ties.

"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, 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.

Six-figure salary

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.

An IRS spokesman said the agency cannot discuss the specifics of an individual's tax lien, but no records have been filed indicating the IRS has discharged the liens. In a brief telephone conversation this week, Brown declined to comment except to say she has paid the tax liens and has spent the funds she raised properly.

Last July, in a lengthy interview, she said questions about her finances arose because of testimony she gave in support of breast implants. Her comments to federal advisers raised the ire of a "nasty, contentious group of women" who disagreed with her views, Brown said. She has declined requests to clarify her IRS reports, sent by fax and overnight mail.

A Boston consultant who works exclusively with nonprofits, however, said Brown's salary and her use of the Breast Cancer Resource Committee's funds to pay her lease warrant scrutiny.

"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."

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.

"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."

Combined with her benefits and the pay she awarded her niece - who was the committee's lone paid employee that year - the $264,746 in spending in 2002 amounted to 47 percent of the Breast Cancer Resource Committee's total revenue.

By contrast, the National Organization for Rare Disorders, generously funded by such biotechnology companies as Biogen Idec Inc., had total revenue of $7.6 million in 2004. Its president, Abbey S. Meyers, was paid $129,943. The salary and benefits paid to Meyers and the organization's four highest-paid employees accounted for about 5.2 percent of the group's spending.

'Wild West atmosphere'

By working out of an office in her basement, Brown nestled into a regulatory black hole: Unlike attorneys general in other states, the attorney general's office in Washington, D.C., has lacked authority to investigate nonprofits, although it will gain such power within three months. Also, Brown's budget was too small to attract the attention of other regulators.

"It's a Wild West atmosphere," Borochoff, of the American Institute of Philanthropy, said of the oversight of small nonprofits in Washington. "Basically, a group this size can get away with a lot."

Despite what nonprofit experts describe as questionable spending, Brown's corporate backers defend their funding decisions.

AstraZeneca, which paid Brown's group at least $380,047 from 1999 to 2004, said it remains a "proud" partner with the Breast Cancer Resource Committee.

The committee "provides a valuable resource through its dedication to reducing the incidence and mortality of breast cancer among African-American women, particularly those who have little or no access to adequate healthcare and treatment," Kirsten Evraire, a spokeswoman for AstraZeneca cancer therapies, said in a statement.

The stakes for drug companies are high. Breast cancer remedies generate $35 billion in sales per year. And African-Americans are a particularly deep market for any drug maker to court.

African-Americans suffer disproportionately higher rates of chronic ailments, such as diabetes, with blacks nearly twice as likely as whites to have that disease. Black men are nearly seven times as likely as white men to be diagnosed with HIV, according to the Centers for Disease Control and Prevention. And, when it comes to cancer, African-Americans have the highest mortality rate of any racial or ethnic group, according to the American Cancer Society, lowering life expectancy when compared with whites.

In return for their donations to patients' groups, drug companies are able attach their names to causes that cancer patients are passionate about, said Selma Schimmel, a three-time cancer survivor who heads a nonprofit that produces a weekly radio show for cancer patients.

The nonprofits consider pharmaceutical and biotechnology industry donations essential.

"When a company donates to us in support of a program that gives aid directly to patients, it is a humanitarian gift, not a donation to influence us," said Meyers, president of the National Organization for Rare Disorders. "If companies stop supporting these programs, we will not be able to help patients who could not otherwise afford their treatments."

Brown said the Breast Cancer Resource Committee has been on hiatus since she moved to Oklahoma to be near her ailing mother.

But during its heyday, the committee's actions were typical of a nonprofit - mainly aimed at spreading the message as widely as possible. For instance, in 2001, the group coproduced a one-hour television special funded by the Susan G. Komen Breast Cancer Foundation, the world's largest grassroots network of breast cancer survivors, highlighting innovative ways to reach African-American women, including sending mammography vans to churches and dispatching health workers to beauty salons.

The production, "A Celebration of Life: Rising Above Breast Cancer" was broadcast on more than 200 public television stations when it first aired.

Pharmaceutical Industry Donations & Continuing Medical Education
Pharmaceutical Industry Donations & Policy Think Tanks and Advocacy Groups
Pharmaceutical Industry Support for Patient Groups/Promotion of Prescription Drugs
Pharmaceutical Industry Donations & Charitable Conduits to Doctors
Pharmaceutical Industry Donations & Influencing Prescribing Guidelines

Pharmaceutical Industry Disclosure Practices