What types of organizations do you think receive the majority of their money from big pharmaceutical companies and opioid manufacturers? Would your list include patient advocacy and education groups like the National Health Council? If not, you’re in for a surprise.
Major patient advocacy groups receive huge contributions from drug manufacturers but have never had to legally disclose these payments or their sources to the public. That means these advocacy groups can endorse certain drugs and lobby for or against drug policies, and still bill themselves as the voice of the consumer, while the public is blind to their enormous conflicts of interest. Without a clear picture of the groups’ allegiances, patients can’t make informed decisions about whose advice they should follow regarding their own medical care.
Senator Claire McCaskill (D-MO) introduced legislation on Wednesday that would bring much-needed transparency to this issue. The Patient Advocacy Transparency Act would require patient advocacy groups, patient education groups, disease-specific advocacy organizations, and others, to report on funds they receive from pharmaceutical companies.
McCaskill’s legislation was largely inspired by a Senate Homeland Security and Governmental Affairs Committee Minority report that delved into the financial ties between opioid manufacturers and third-party advocates. According to that report, 5 drug manufacturers contributed nearly $9 million to 14 patient advocacy groups between 2001 and 2009. The recipient advocacy groups largely work on issues of chronic pain and opioid addiction, but rather than warning patients about the hazards of opioids, their messages often support increased opioid use by those suffering chronic pain. According to the report, the advocacy groups “… issued guidelines and policies minimizing the risk of opioid addiction and promoting opioids for chronic pain, lobbied to change laws directed at curbing opioid use, and argued against accountability for physicians and industry executives responsible for overprescription and misbranding.”
Pro-opioid advocacy is detrimental to patients and their families, as well as to taxpayers. According to the Centers for Disease Control and Prevention, 42,249 Americans died from opioid use in 2016, five times more than those who died from opioids in 1999. Further, the White House Council of Economic Advisors reports that in 2015 alone, the economic cost of the opioid epidemic was $504 billion dollars, 2.8 percent of our GDP that year.
The scale of the epidemic is alarming to say the least. The fact that advocacy groups are taking money from opioid manufacturers and then directly advocating for American opioid use without publicly reporting the source of that money is underhanded and manipulative, but still legal.
The Project On Government Oversight has been investigating and reporting on this very issue for years. In 2016, we reported on a public forum convened by the Food and Drug Administration to receive input from patient and consumer representatives on a new policy for speedier FDA review of prescription drugs. POGO’s investigation revealed that at least 93 percent of the “patient advocacy groups” represented at the forum received funding from drug companies. Further, more than one-third of the groups had pharmaceutical company executives, directors, or other company personnel on their governing boards. But none of these advocacy groups revealed this fact as they made their impassioned appeals in support of a policy that sought to speed up FDA drug approval. All of this grandstanding was supposedly for the benefit of patients and their families, but the groups’ financial ties to pharmaceutical companies that would directly benefit from the policy’s passage says otherwise.
Senator McCaskill’s legislation is needed now more than ever to expose this blatant financial conflict. Without this measure, Americans relying on patient advocacy groups for guidance may continue to be misled by those with undisclosed skin in the game. This legislation offers consumers and patients a clear lens through which to view advocacy groups’ claims and POGO urges Members of Congress to swiftly pass it into law.