[Ip-health] Drug firms' funding of advocates often escapes government scrutiny

[Joana Ramos]

http://www.boston.com/business/globe/articles/2007/03/18/drug_firms_funding_of_advocates_often_escapes_government_scrutiny/?page=full


Drug firms' funding of advocates often escapes government scrutiny
Many patient groups depend on it, raising tricky ethical questions

By Diedtra Henderson, Globe Staff  |  March 18, 2007
The Boston Globe

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 co authored 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 co produced 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.

Diedtra Henderson can be reached at dhenderson@globe.com

--
Joana Ramos, MSW
Cancer Resources & Advocacy
7303 23rd Ave. NE
Seattle, WA  98115
206-229-2420
http://ramoslink.info/