Christian-it was good to see you and to meet Chris. Thank you for being a sponsor. This was by far the best conference I have ever attended. The diversity of media, academics, lawyers, patients, activists, doctors, nurses and international participants made the conversations dynamic and productive. Thank you for this great summary that I would like to have your permission to share with others on my blog. OK?
By: Christian John Lillis
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.
- I met Allan Jones, a former health investigator in Texas, who blew the whistle on state employees who were getting kickbacks from the drug industry to promote expensive antipsychotic drugs to foster children and other wards of the state. For his trouble, Jones was fired, but kept on working until Johnson & Johnson was forced to settle the case for $158 million. In talking with Jones, he told me that he had just recovered from a four-month battle with a clostridium difficile infection that nearly killed him.
- 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, SSRIStories.com 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.
Of course, Joleen. Share it widely. Great to see you.
Great post, Christian. You really made me feel as if I’d been there — and stirred up some piss and vinegar for work here at home. Bravo! and thanks.
I agree with everything you said about the conference. It was an exciting and inspiring event. I think each of us would have a different perspective according to the sessions we attended and the contacts we made, but it was perhaps the most exciting healthcare safety event I have attended yet. Thank you for writing this and I will share it too.
It’s always nice to see you and Chris.
Thank you for the glimpse, but I’m feeling worse by the minute for not being there! I knew Kim would put together a great program. I continue to be amazed by the work of these activists.
AS the Whistle Blower against Peanut Corp. I am so sad to say, I am sad to say I am not surprised. i wish I was, but there is a LOT of work to be done.
Great post on your experience. I am going to share this too.
We need to keep these conversations going and not lose the energy that was started at Selling Sickness. Thanks so much for being a sponsor of the conference.
PS – Loved Chris!!!
Kim..Keep up the great work you do.. Losing my sister in 1981, then to find out in 2009 the truth about her death, for I always knew there was a “reason” that lead to her sudden death. Today Decades later.. we still don’t have her back but we do have closure to why. Anyone wanting to read my story feel free to contact me. I am Lisa Gina on Facebook. Kim Woody would be so proud of you. May they all RIP.
The conference went beautifully and we are all proud of Kim. Meeting
Christian’s Chris and Jack’s Rob were also
highlights. I even learned from Pat how to tweet
Which I will try later as I sit in the airport it’s dumping in Denver.
It was wonderful to see everyone and meet new folks as well. Until next time.
Thank you for this great synopsis of the Conference! It sounds like the Patient Safety Movement just went to a new level!!
I am so proud of Kim and very honored to know the other knowledgeable and passionate advocates who participated in this important event. You are great mentors and inspirations!
I think it was a huge step forward, Alicia. Though you were sorely missed. 🙂
Thank you so much for this wonderful summary of the event. Hands clapping and standing O!! There is no way with this kind of energy,expertise and dedication, that the “band of advocates” will not be successful in impacting the healthcare system in a positive and meaningful way. The fact is we already are!!
I am thrilled and excited to share your blog. Thank you!
I’m so glad you found it illuminating. It was an amazing experience.
Thank you so much for such a great summary of events. I wish I could have been there. Thank everyone who made this happen for giving this old advocate some hope for the future.
Many Blessing to All
Thank you for sharing these great insights. I look forward to diving into the resources and links you provided. There is so much power in these stories. I hope we all continue to listen to them AND learn from them to create real change in healthcare.
Thanks so much, Matthew. The conference was amazing. 🙂
I’m so glad you were able to attend but also, and more importantly, are in this fight. The more I learn about the struggle, the less confident I feel that the system works.