March 18, 2019; Associated Press
Yesterday, NPQ wondered whether nonprofit boards can be trusted to police themselves regarding conflicts of interest where financial deals are concerned. If all the proper disclosures are made to the IRS, are their obligations of transparency and good governance discharged? In the case of patient advocacy groups like the Alliance for Patient Access, it seems the answer is “no.”
Richard Lardner of the Associated Press reports that the Alliance for Patient Access (AfPA), a nonprofit “dedicated to ensuring patient access to approved therapies and appropriate clinical care,” is in fact tied so closely to the pharmaceutical industry that their ability to serve their claimed constituents—patients—is deservedly under scrutiny.
As Lardner reports, Brian Kennedy serves as both the executive director of AfPA and the president of Woodberry Associates, a lobbying group; he also used to serve as a top official at the Republican Governors Association. Woodberry and AfPA not only share a leader, they share office space in Washington. Though Kennedy draws no salary as an executive director, AfPA paid nearly $250,000 in 2017 to consultants Gavin Clingham and Amanda Conschafter—names that match those of two consultants who work for Woodberry.
AfPA’s more concerning ties are to the pharmaceutical industry. Their list of supporters includes over a dozen major pharmaceutical companies, including Amgen, Genentech, Sanofi, Pfizer, and Eli Lilly. Lardner reports that the doctors who serve on the board of directors, while they don’t draw salaries, “have earned tens of thousands of dollars in consulting and speaker fees from the health care industry, including companies that back the Alliance.”
As might be expected, AfPA does not view favorably growing scrutiny of the pharmaceutical industry as a way to decrease healthcare costs. A Kaiser Family Foundation poll found that 80 percent of Americans believe that profits made by pharmaceutical companies are a “major factor” contributing to the price of prescription drugs. Nearly a quarter of those who rely on prescription drugs find it “difficult” to pay for them, and there is bipartisan support for measures such as international reference pricing, transparency in advertising, and allowing the government to negotiate Medicare drug pricing. (Other governments negotiate with drug companies and thereby keep prices lower, so both international indexing and government negotiation would likely have a salubrious effect on the painfully high prices Americans pay for medicines.)
No, says AfPA; this is too close to socialized medicine! We can’t let the government set prices! (In fact, as NPQ pointed out, “Medicare for all,” which is close to socialized health care, would probably work just fine.)
Other patient advocacy groups have been called out for artificially inflating drug prices by using pharma industry money to fund the nonprofits that help patients afford drugs, or to lobby against regulations.
AfPA also gets into politics more directly; Lardner reports that they spent $13.6 million in 2015 and 2016 on press releases and advertisements to “recognize” members of Congress who “have championed patient access in the Medicare program.” One such representative is Senator Lamar Alexander (R-TN). Predictably, the language on his website about lowering healthcare costs blames government bureaucracy and does not mention the absurd prices charged by the pharmaceutical industry.
AfPA responded to Lardner’s article, saying, “The Associated Press article follows a growing media trend of reporting on patient advocacy groups and their funding, while ignoring the substance of the policy issues they raise and the good work they do on behalf of physicians and patients.” That feels a bit like a red herring…
As Susan Hepworth, a spokesperson for both the AfPA and Woodberry Associates, pointed out, AfPA “files all of the appropriate paperwork with the IRS.” Is that enough? NPQ has reported numerous times on the fact that the IRS is underfunded and overburdened with paperwork, unlikely to catch an uncharitable charity without a big push from the outside. But despite coverage from the media and even the pursuit and fining of malefactors by the US Department of Justice, the field continues to represent itself as patient-centered, even while using that constituency of the sick and vulnerable to promote the agenda of big business.—Erin Rubin