Allen Jones couldn't stand by and let the government officials he worked for recommend expensive and possibly unsafe drugs for mental health patients so that they could get kickbacks from the pharmaceutical industry.
Jones, who was an investigator at the Pennsylvania Office of the Inspector General, found that Johnson & Johnson and Janssen Pharmaceutical paid honoraria to key state officials who held influence over drugs prescribed in state-run prisons and mental hospitals. He was fired when he blew the whistle, so he sued his employer in a case that wound up in the Texas courts and resulted in a $158 settlement from Johnson & Johnson and Janssen.
When his battle began in 2004, Jones didn't think he would end up with 250 activists, lobbyists, academics, practitioners and fellow whistleblowers over two crisp grey winter days at a hotel on Capitol Hill in Washington D.C.
Participants of 'Selling Sickness: People Before Profits' spent February 21 and 22 detailing a multitude of grievances against the global four billion dollar pharmaceutical industry.
"I came to this conference because I wanted to give some things back to the people who have supported me, and to tell people that it’s possible to take a stand against big pharma and succeed," said Jones.
He joined Canada-born whistleblowers David Healy and Nancy Olivieri, who continue their work to expose the pharmaceutical industry's role in shaping medical research more than a decade after their high profile Canadian cases of academic freedom involving the University of Toronto.
Healy's new website RxISK.org, allows anyone to research prescription drugs and report side effects. It addresses a dearth of this kind of reporting due to the fact that pharmaceutical companies, who run the majority of clinical trials, don't share data that might hurt their profits, according to the website. Healy says the website is an effort to go beyond just talking about the problems with industry.
"If you're waiting for a company to ever admit it has caused a problem, you will be dead before you hear it," said Healy, who scathingly takes on the industry in his recent book Pharmageddon, just listed one of the best non-fiction books of 2012 by Maclean’s. The tone of the book represents a growing urgency that the conference hoped to capture.
'Selling Sickness' aimed to develop strategies and coalitions for change, demanding an end to "industry-promoted disease-mongering," by which they mean industry efforts to shape health concerns and health practices to benefit their bottom line.
"It's a powerful summary of what needs to happen," said Jim Guest of the Consumer Union, who in past lives has donned a bullet proof vest in both his roles lobbying for gun control and working for Planned Parenthood. "If you flip it, profits before people, you know it's wrong."
The Consumer Union is a non-profit consumer advocacy organisation that works on patient safety. They were one of forty organisations that sponsored and endorsed the event.
Participants detailed the ways that industry has manipulated patients, doctors and researchers to sell drugs for everything from 'female sexual dysfunction' to 'restless leg syndrome.' Panels explored "Patient Narratives: From Grief to Action," "The Medicalization of the Menstrual Cycle" and "The Disease Mongering of Aging."
Hundreds of books on the pharmaceutical industry's most calamitous errs lined the hotel's aptly named "hall of battles," where their authors busily networked with other conference participants. These attendees included the "pharma-harmed," who have been injured by taking pharmaceutical drugs, the loved ones of those who have been killed in such cases, scientific researchers, journalists and political dynamos like Sidney Wolfe, head of the Public Citizen’s Health Research Group, which challenges abusive pharmaceutical practices in the U.S. courts.
Wolfe's group has successfully advocated for the banning of 25 prescription drugs, due to evidence that the drugs pose a danger to patient health. Like other conference participants, Wolfe represented the struggle against industry as a war on patients, the response, an "anti-war effort."
At the heart of this effort were organisers Leonore Tiefer and Kim Witczak, who themselves bridge the activist-academic divide, and were invigorated by the experience.
Tiefer is an academic heavy-hitter whose research on female sexual dysfunction has met much acclaim. She now heads an educational campaign that challenges the pharmaceutical industry's characterization of women's sexual problems and calls for more research on the matter.
Witczak is an ad agency marketing executive whose husband, who had no history of mental illness or depression, took his own life in 2003 after taking Zoloft to reduce the stress of a new job.
The Washington conference is the third of its kind, inaugurated in Australia in 2006, and precedes other like-minded conferences on the roster for 2013: 'PharmedOut' has a conference in Georgetown July 6 and 7, and 'Preventing Overdiagnosis' takes place in September at the Dartmouth Institute for Health Policy and Clinical Practice.
The organisers write in their welcome to participants: "There is a progressive political tide turning against the marketization of health, the corporatization of healthcare, and the hijacking of patient and consumer language to disguise market interests."
The embattled activists, the wary patients, the frustrated health practitioners and researchers of the world, appear to be uniting.
Kelly Holloway is a PhD Candidate at York University, studying the influence of the pharmaceutical industry in medical education in the United States and Canada. She attended Selling Sickness to present her doctoral work.
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