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Journalists, Patient Advocates and Whistle blowers… Oh my!

Chris and I spent the past two days in Washington, DC at the first-ever Selling Sickness: People Before Profits conference organized by patient safety activist Kim Witzcak and anti-medicalization academic Leonore Tiefer. In

short, the conference was amazing and a bit overwhelming. The amazing part was seeing the huge number of activists, academics, physicians, journalists, and healthcare workers come together to take on the extreme dysfunction in the United States healthcare system. The overwhelming part was seeing the extent to which our healthcare system is broken and rather than healing us is too often causing more harm than good.

We are taught by our culture and the media to believe that the US healthcare system is the best in the world, the doctors are as infallible as the Catholic Pope, and that if we submit ourselves to its ministrations, we will be given a pill, a procedure or a device that will “fix” us. Sadly, for a host of reasons, our healthcare system is failing far too many Americans – subjecting us to an epidemic of over-treatment, bad science and costing the US more in dollars than any other post-industrial country while delivering, in many cases, worse outcomes.

Because we are so reliant on the healthcare system, most of us do not want to face how deeply flawed it is, particularly when we or a loved one is ill and vulnerable. Moreover, nearly everyone of us knows people who work in healthcare. We have uncles who are MRI techs, sisters who are nurses, brothers-in-law who are doctors, friends who are pharmaceutical salesmen. The vast majority of them are good, moral people who go to work every day wanting to help the sick and suffering but the corruption in our system hobbles our best intentions.

Since I can’t possibly do justice to the entire conference in this blog post, I want to share a few highlights of the people we met and stories we heard. The conference organizers will be making session materials available next month and we will post a link to them then.

  • Dr. John Abramson of Harvard moderated an eye-opening roundtable of researchers and scientists critiquing the way new drugs are approved by the Food and Drug Administration. About 85% of all drug clinical trials are now funded by the companies that developed the drug. This is an obvious conflict of interest made worse by the fact that 45% of the funding for the FDA comes from the fees companies pay to have their drugs, devices and procedures approved. In real terms, this leads to drugs and devices that are ineffective and/or harmful being marketed to doctors and hospitals who are often ignorant to the truth behind the false advertising claims made by the manufacturers. Check out Dr. Abramson’s book, “Overdosed America”, for the full scoop on the dangers in our current approval process.
  • The “From Grief to Action” panel hit home for me. It featured Helen Haskell of Mothers Against Medical Error, who lost her 15-year-old son Lewis in 2000; Dan Walters, whose wife suffered terrible injuries to her heart when an intern was allowed to perform a new surgery unbeknownst to them; Sara Bostock, whose daughter committed suicide while on an SSRI; and John Fratti, a former pharmaceutical sales rep who suffered neurological damage from using the antibiotic Levaquin. Author Rosemary Gibson moderated the panel. While each of their stories is unbelievably painful to hear, they have all made amazing contributions to advancing patient safety in their own way. Helen has passed Lewis Blackman Hospital Safety Act in 2005 in her home state of South Carolina, among her many accomplishments. Sara was pivotal in creating a website, that compiles the harm caused by antidepressants. Dan published an excellent book, “Collateral Damage”, that details how his wife was harmed. John created a blog, Levaquin Hurts, and even purchased stock in Johnson & Johnson so he could tell his story at the company’s shareholder meetings. The most touching moment for me came when Rosemary asked the panel how they manage to keep doing this work after so many years. Helen simply replied that she couldn’t stop if she wanted to; losing her son was so painful that advocacy was a necessary reaction (and distraction) to her own grief and suffering.
  • During the “Hijacking Patient Empowerment” session,  Rosemary Gibson gave a stirring presentation that highlighted the similarities between the mortgage crisis that blew up the world economy in 2008 and the current crisis in healthcare in terms of harm caused, lack of transparency and inflated costs, that should worry every American.
  • Our good friends, Patty Skolnik and Pat Mastors, held a great session on building allies among doctors, administrators, politicians, executives in order to effect change within the system in addition to exerting pressure from outside the system.

There were many other amazing panels, sessions and people that we met during the conference. I’m proud that The Peggy Lillis Memorial Foundation was a co-sponsor of Selling Sickness and look forward to keeping all our supporters informed about the great things that result from it.

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