SellingSicknessPosterConsumers Union’s Safe Patient Project is here in DC at the Selling Sickness conference, and we’ll be live blogging speakers and panels while we’re here. Just come back to this page to see our live updates. We are joined by Safe Patient advocates (advocates who work with us), journalists, academics and consumers. The conference will cover issues of disease-mongering. See the Selling Sickness poster to the left for an example of juicy topics that will pop up here [photo credit: Selling Sickness]. Consumer Reports’ President and CEO, Jim Guest, will be delivering a keynote address on Friday morning and there will be a few videos from Consumers Union and Consumer Reports screening in the Selling Sickness Popcorn Showcase Program. (Cool name, yes?) We look forward to being at this exciting conference and bringing you updates!

Stay tuned for our live webcast today from 1:30-3pm EST of the consumer panel titled “Patient Narratives: From Grief to Action” moderated by Rosemary Gibson, author of The Treatment Trap. You can grab the link here or on our Twitter feed @CUsafepatient, where we’ll be tweeting #SellingSickness.

 

 

Daniela Nuñez Daniela Nuñez February 22, 20131:57 pm

Panel: Legislative Roles of the States vs. Federal Government explores avenues for organizing consumers to push for changes in the way drug and device companies mislead consumers through marketing. Bill Vaughan, former Consumers Union lobbyist on FDA issues, shared unique strategies that use the government’s financial crisis, postmarket safety study legal authorities and activist state governments to achieve needed reform. Petitions to FDA to require postmarket studies of drugs that harm patients. Jean Rexford, Executive Director of Connecticut Center for Patient Safety, discussed limitations and successes in her work in CT to push for legislation requiring public reporting of pharma gifts to CT doctors. The opportunity to build coalitions, educate consumers and develop media relationships is paying off. Sharon Treat, Executive Director of NLARx, talked about using state and local initiatives to push action nationally to expose conflicts of interest, promote academic detailing and protect children from inappropriate prescribing, challenge misleading marketing, and educate the public and media.

Daniela Nuñez Daniela Nuñez February 22, 201310:26 am

Roundtable on Medical News highlights issues that reporters and medical journals face in getting information out about the real story on treatment issues, drugs and medical devices. The panel included Dr Elizabeth Loder with the British Medical Journal, who talked about the challenges in delivering accurate messages about health research. Loder said that every treatment/drug should come with a warning label that follows it throughout its life – new medical research should carry a warning: this has not been verified and has not been replicated. Often the “replications” have a harder time getting published than original research and much published research is eventually completely debunked. Nancy Shute, an independent NPR reporter, said studies should be categorized with labels like “not interesting but true” or “not sexy but important.” By the way, the moderator, Gary Schwitzer, is the creator of the fantastic Health News Review blog http://www.healthnewsreview.org/blog/ that evaluates health care journalism, advertising, marketing, public relations and other messages that may influence consumers and provides criteria that consumers can use to evaluate these messages themselves – be sure to check it out.

Daniela Nuñez Daniela Nuñez February 22, 20139:06 am

Friday keynote address by Jim Guest, President and CEO of Consumer Reports and Susan Wood, PhD, Director, Jacobs Institute of Women’s Health, The George Washington University. Guest said that conflicts of interest and lack of transparency threaten the quality and safety of health care for consumers. Discussed the power of collective action and patient stories to push for change. Shared information about Consumers Union’s Safe Patient Project, Consumer Reports Health Ratings Center as well as Choosing Wisely. Wood talked about the intense Pharma lobbying in DC and discussed the need for people to mobilize to counter the presence of profit-driven medical industry.

Daniela Nuñez Daniela Nuñez February 21, 20134:10 pm

Another enriching panel: “Hijacking ‘Patient Empowerment’” featuring John Powers MD, Rosemary Gibson, Thea Cacchioni and moderated by Celia Wexler (Union of Concerned Scientists). Powers discussed flaws with FDA’s claim that “patients are willing to accept more risk” and “patient groups” hired by drug companies. Rosemary Gibson compared the mortgage crisis to the selling of sickness by medical industry (privatized gains and socialized losses). Thea Cacchioni discussed the painful and expensive methods used by some health professionals to treat women’s sexual pain and the grassroots DIY alternatives. Several panelists emphasized need for activism to elevate the issues of patient harm in government and at FDA.

Daniela Nuñez Daniela Nuñez February 21, 20132:20 pm

What a phenomenal panel! Patient Narratives: From Grief to Action was a captivating session of patient safety advocates, including Helen Haskell (Mothers Against Medical Error); Dan Walter (author of Collateral Damage), John Fratti (Levaquin victim and drug safety advocate) and Sara Bostock (Drug Awareness Advocate). The panel was moderated by Rosemary Gibson, author of The Treatment Trap. The top takeaways were the power of patient stories and the devastation of medical harm on patients and families; getting media attention by reaching out to local media; networking with others in the patient safety movement and hearing their stories; pushing for transparency and outcomes data. This work has to be done!

Daniela Nuñez Daniela Nuñez February 21, 201311:01 am

Just entered the Roundtable: Researchers and Scientists. Learned that a recent Supreme Court decision held that generic drug manufacturers cannot be held accountable for failing to disclose side effects. Patients must do their own research.

Daniela Nuñez Daniela Nuñez February 21, 201310:17 am

At Roundtable: Whistleblowers and Selling Sickness – hearing from panel members who spoke out about hidden drug risks to patients. These whistleblower panelists, whether FDA scientists or government employees, were reprimanded or fired for trying to do the right thing to protect patients.

Daniela Nuñez Daniela Nuñez February 21, 20139:21 am

Keynote Sidney Wolfe MD, Health Research Group, Public Citizen: revealed Bayer’s history of marketing and selling heroin as a cough suppressant, resulting in a large number of heroin-related hospital admissions and eventually the drug being taken off the market by the manufacturer. Shared pharmaceutical industry financial penalties: civil vs. criminal. Discussed Public Citizen petitions to FDA to ban certain Rx drugs and offered solutions to medical overtreatment: don’t use any new drug unless it’s been on the market for 7 yrs; less is more

Daniela Nuñez Daniela Nuñez February 21, 20138:30 am

Keynote: Jeanne Lenzer, Independent investigative journalist at BMJ: undertreatment and overtreatment – the “siamese twins” of profit-driven medicine. Clearly can’t solve problem of overtreatment or undertreatment through market forces. This movement risks derail unless it addresses this problem – if people in this movement believe healthcare is a common good, then what guides us first is not cost savings but whether the care we get is the right care.

Daniela Nuñez Daniela Nuñez February 21, 20138:04 am

Keynote: Shannon Brownlee, Senior Research Fellow, New America Foundation and author of Overtreated: Why Too Much Medicine is Making Us Sicker and Poorer: Way forward is not purely technocratic – not purely regulatory, not just better science and transparency, these are necessary but not sufficient – central task is to reshape social contract between civil society and medicine – working to restore deeply ethical core and social responsibility of medicine