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A
little too cozy?; Not-for-profits may have undisclosed funding ties to
for-profit drug companies
"Insomnia is a condition that is under-recognized, under-diagnosed, and as a result, under-treated," warned the National Sleep Foundation, as it proclaimed March 29 "Insomnia Awareness Day" and March 27 to April 2 "National Sleep Awareness Week." A poll released by the nonprofit group disclosed that 50 percent of adult Americans have problems getting to sleep at least once a week, and 10 percent -- about 22 million people -- rarely get a good night's sleep. Those findings were reported by virtually all of the country's major newspapers and television networks. Lost in the somber warnings and survey results, however, was that the poll, the proclamations and the press kits that spread the information were paid for by sleeping pill manufacturers. Or that 10 of 23 members of the National Sleep Foundation's board have, or have had, financial ties to sleeping pill manufacturers, the very same industry that represents the main source of revenue for the foundation. Or that the New York public relations firm that contacted medical reporters about the poll also made sure to mention the mid-April release of Lunesta, the first sleeping pill approved for extended use by the federal Food and Drug Administration. If all this seems a little incestuous, it's also an example of the relationships many not-for-profit health advocacy groups have with the for-profit health industry. The groups run the gamut of causes and targeted consumers, from the National Women's Health Resource Center to the Coalition for Children's Health to the Alliance for Aging Research. Leaders of organizations that advocate on behalf of people with specific diseases, disorders or conditions concede their groups couldn't survive without corporate sponsors, and contend it's natural that chief among them are companies that sell products to treat the ailment. "The largest single source of National Sleep Foundation funding is pharmaceutical and medical device companies," said Richard Gelula, chief executive officer of the foundation. "Just like the largest area of support for the Daytona 500 comes from Ford, GM, oil and tire companies." But there's a difference. At car races, company logos and brand names brazenly adorn everything from car hoods to driver helmets. Drug company -advocacy group alliances often remain unknown to consumers. "The public may be getting hoodwinked because they may think these nonprofits are independent," said Daniel Borochoff, president of the American Institute of Philanthropy, a watchdog group that provides information about nonprofits. "But how can they do it independently if they are paid by the drug companies? " Borochoff and other critics say that even the best-intentioned advocacy groups can ignite public fears about conditions that may not be medical problems, divert attention from more serious health issues and put pressure on doctors to prescribe medications that may not be necessary. While some of these advocacy organizations begin as true grass-roots associations that later come to rely on financing from the pharmaceutical industry, others sprout directly from drug company seed money. And some are hybrids. / The NSF story The National Sleep Foundation was born when the American Academy of Sleep Medicine, a professional group of sleep doctors and researchers, gave former academy officials $100,000 to begin a sleep education and public awareness group. The group's metamorphosis soon began. The NSF was officially launched in 1991 with the release of a sleep-problems survey paid for by the Searle drug company. The following year, Searle's blockbuster sleeping pill, Ambien, was approved for sale, and the company provided the NSF grants for "insomnia awareness" workshops in 20 cities. In succeeding years, the foundation has staged at least one national event a year, often built around a survey about a sleep-related problem, and usually sponsored by a pharmaceutical firm. It also has won widespread praise from sleep medicine researchers and doctors for its work publicizing the problems of sleep apnea and the effects of sleep deprivation on driving. But its original connection with the American Academy of Sleep Medicine is no more. The academy's Web site makes no mention of the NSF, and while it links to other sleep organizations' sites, it does not link to the NSF. Academy officials declined to comment on the NSF. Advocacy groups aren't required to publicly list individual sources of income, although many include general financial statements with the annual reports posted on their Web sites. The National Sleep Foundation's 2003 annual report, for example, vaguely lists "contributions" as a revenue source. In another section of the Web site, the group says it "is supported by a number of sources, including individual donors, memberships, sales of educational materials, advertising, investment income and grants." However, an analysis of the group's 2003 revenue sources, provided by the NSF, shows more than half of the $2.6 million collected that year came from drug companies, including $481,000 from Sanofi-Aventis, which now markets Ambien; $205,000 from Elan, which developed the sleep drug Sonata; and $267,000 from Pfizer, maker of the over-the-counter aid Unisom. Of the $1.4 million the NSF received in direct grants and sponsorships, including support for the annual gala, almost two-thirds came from drug companies. The NSF's Web site also states that grants from corporations are accepted only on a no-strings basis, and that the foundation "alone determines the ideas and content published or promoted in the program created by the grant support." / A misstep The publicity campaign preceding the release of this year's poll and Insomnia Awareness Day, coordinated by a public relations firm called the Zeno Group, appears to have violated that guideline. Included in the NSF information sent to reporters was a pitch for coverage of the release of the Lunesta sleeping pill. The NSF's Gelula said it was a "mistake" for the PR group to have mixed the messages. Under terms of an agreement among the NSF, the Zeno Group and Lunesta maker Sepracor, the foundation was to provide information and direction, the PR group was to handle the publicity and the drug company was to handle the financing. "They crossed the line in terms of what they were supposed to do," Gelula said. "There was supposed to be a firewall. The fire got through the firewall." Gelula declined to disclose how much money Sepracor gave the NSF in 2004 and 2005. "I'll be damned if I do, and damned if I don't," he said. But he did say the group would not enter into similar agreements again. "The people behind this organization have too much at stake, too much integrity." The people behind the NSF include a 23-member board of directors, who are listed on the foundation's Web site, www.sleepfoundation.org. What isn't listed are the financial ties of at least 10 of the members of the board to the drug industry, through research grants, consultancies or honoraria. For example, board chairman James K. Walsh, a psychologist, has received money from 25 drug companies. Gelula said all foundation board members have to fill out conflict-of-interest statements, disclosing their financial dealings with the sleep industry. When asked for a copy of that statement, however, Gelula said he couldn't locate one. In contrast, the American Academy of Sleep Medicine, whose membership consists of sleep doctors and researchers, posts a detailed conflict-of-interest policy on its Web site. Even the appearance of a connection between drug company money and advocacy group leaders is a matter of some concern in the medical profession. Critics point to the revelation in February that 10 members of a 32-member advisory panel to the Food and Drug Administration had financial ties to the companies that make the painkillers Vioxx and Bextra. All 10 had voted to keep the drugs on the market, despite research findings that the drugs could cause cardiac problems. Whether a bias is
"real or perceived, it's detrimental to medicine and to physicians,"
said Dr. David Campen, a rheumatologist and medical director for drug
information, use and technology for Kaiser Permanente Northern California.
"We need to be far more transparent." |