Billy Tauzin has spent most of his life in politics. He has been a member of the House of Representatives as both a democrat and a republican, though his recent experience with a rare and usually terminal cancer (duodenal adenocarcinoma) radically changed his career path and trajectory. I caught up with Mr. Tauzin by phone at the America’s Agenda conference in Miami. You may listen to our podcast conversation or read my summary of our discussion below.
Dr. Val: Tell me a little bit about your intestinal cancer and how that changed the course of your life.
Tauzin: I was in the process of finishing up a 25-year career in Congress when one night I had a sudden, massive bleed. I was taken to the hospital and was diagnosed with a rare cancer with a poor prognosis: duodenal adenocarcinoma. There was a hole in my intestine, right next to my pancreas.
I went to Johns Hopkins to have a Whipple procedure – and as you know a Whipple procedure is one of the most aggressive types of surgery anyone can endure. They kind of split you open like a fish, pull out your innards and restructure you. They had to remove part of my stomach, intestines, and pancreas, and then reconnected it with new ducts and channels. The Whipple was supposed to cure me, but unfortunately I found out (at a follow up visit at MD Anderson) that there was still cancer in my body.
The doctor told me very frankly that I was going to die.
Dr. Val: Tell me about the experimental drug that you were introduced to at that point.
Tauzin: My doctor reviewed my options with me: I could undergo another surgery, but that would probably kill me and would be unlikely to cure the cancer. They had no approved protocol for people in my position, but there was a drug (called Avastin) that had been successful in treating colon cancer – but was not yet approved for duodenal adenocarcinoma. The drug works by cutting off the blood supply to tumors – which meant that the drug could either damage my healing process or kill the cancer. My wife and I decided to take the risk because we had very little to lose. It was really a choice between “going to die” (my current situation) and “might die” (Avastin could cure me).
It’s a good thing we tried Avastin because it worked like a miracle. By the end of my first round of chemotherapy, the radiologist couldn’t even find the tumor on my CT scans. It was gone. I completed several courses of chemo and radiation and I’ve been cancer-free for over 5 years now.
Dr. Val: Did this miraculous recovery influence your decision to become the CEO of Phrma?
Tauzin: After I recovered from cancer, I was fortunate to be offered many different job opportunities. However, my wife looked at me and said, “You know Billy, you really ought to go to work for the people who saved your life.” And I thought, “If there’s a meaning in why I’m alive today – then surely it must be to use my experience to help patients like me across the world.”
Dr. Val: So what are you hoping to achieve at the America’s Agenda conference in Miami?
Tauzin: This conference is unusual in that we’ve gathered together a group of very disparate voices from different perspectives – labor, business, health plans, trade associations, academic medicine, etc. hosted by Donna Shalala (former Secretary of HHS) at the University of Miami. We are trying to define our commonalities so we can influence health reform more effectively.
Washington is all about differences – it’s partisan, it’s mean, and I’ve been on both sides of the aisle. I can tell you that there are good people in both parties, but they’d never know it because they consider each other enemies. What we’re trying to say here is: patients don’t sign in as democrat or republican when they register at a hospital. They sign in as sick people. This is not a partisan issue. We have a sick care system that needs to be a health care system.
Dr. Val: What should the Obama administration choose as their top priorities for health reform?
Tauzin: First of all we need to recognize that we spend 75 cents of every dollar on the damage done by 5 chronic diseases (including diabetes, heart disease, mental health, cancer, and lung disease). We must focus our system on early detection and prevention of these diseases, so that we manage them well and avoid the costly toll they take when untreated. We’re destined to be a poorer, sicker society if we don’t get insurance coverage for every American. We need insurance to provide early detection, prevention, and good management of our chronic diseases. How we do that is debatable. But we need to get there.
By Stacy Beller Stryer, M.D.
Just last week three parents in my practice either refused or asked to alter the recommended vaccine schedule for their infants, and so far this week there have been another two. None of them have had good reasons, and none had truly researched the pros and cons of having their child receive each vaccine. The other day there was a memo on my desk, from the American Academy of Pediatrics, which discussed 5 children under age 3 years who had developed haemophilus influenza (Hib) in Minnesota last year, one of whom died. Three of the children who became ill, one of whom died, were unimmunized because of parent refusal. Another had a recently diagnosed problem with the immune system, and the last hadn’t finished the Hib series at the time of illness.
It is difficult to hear these parents refuse the vaccine, and, although asked by parents, I cannot choose which vaccines they should get now and which they should get later because all are potentially deadly. If only parents could see what I saw as a medical student and resident, before there was the widespread use of the Hib vaccine, and before the development of the pneumococcus vaccine. If only they could see the infants and toddlers admitted with terrible infections, such as meningitis, where some developed permanent brain damage or total hearing loss, and others were not so lucky. Or the children who developed epiglottitis and could barely breathe, where even asking them to open their mouths or agitate them by examining them was risky and could cause respiratory collapse. Or those who developed arthritis in their hip or bones and received antibiotics for weeks, hoping that they would not need surgery or develop permanent damage. And, of course the many children who were admitted to the general ward or intensive care unit with pneumonia and significant respiratory distress. These are just some of the things I saw before the development of these two vaccines, most of which I just do not see anymore.
According to the Centers for Disease Control, before the widespread use of the vaccine about 15 years ago, Hib occurred in over 20,000 children per year, and about one in 200 children under age 5 years developed meningitis, with 25% of those affected developing permanent brain damage. Since the use of the vaccine, the number has dropped dramatically but is now beginning to increase again because parents are not immunizing their children adequately. The Hib vaccine prevents against infections such as meningitis, epiglottitis, septic joints, bone infections, soft tissue infections and pneumonia. There are no known serious side effects to this vaccine. The pneumococcal vaccine prevents against pneumonia, sinusitis, ear infections, meningitis, and soft tissue infections, among others.
Not only do parents harm their own children refusing a vaccine, but they also harm others. If parents don’t immunize their children, they are at greater risk of becoming ill with serious illnesses, are more likely to infect others with these infections, decrease the general “herd” immunity in the community, and may need to be excluded from school or other activities during outbreaks with vaccine-preventable illnesses. I am asking you to read about these vaccines, look at the research on their association with autism, ask your physician questions (we did spend seven years in medical school and residency learning about this), and make an informed decision. I am confident that, if you educate yourself, your decision will be the right one.
In a press release dated January 28, 2009, the HealthCentral Network announced the acquisition of a company called Wellsphere from its young CEO, Ron Gutman. Many of my fellow medical bloggers are familiar with Wellsphere as they’ve received countless email form letters from Wellsphere’s CMIO, Dr. Geoffrey Rutledge. The form letters are flattering, and suggest that the company would like to feature the blogger’s writing on their platform.
But what happens next is disturbing – to become a member of Wellsphere, bloggers provide access to their blog’s RSS feed. Hidden in the fine print is the blogger’s consent for Wellsphere to publish the entire feed (in other words, all of the blogger’s written work) and that once it’s published on their site, they own the intellectual property rights to it.
Astonishingly Wellsphere convinced some 1700 bloggers to join their network, and have now sold their site (which is comprised almost entirely of blog post content) to HealthCentral Network for an undisclosed amount, likely in the millions.
How much did the bloggers get for their writing? As far as I know, zero dollars.
Is this the biggest scam ever pulled on health bloggers? You decide. If you have any additional information, feel free to post it in the comments section below.
Addendum: HealthCentral Network CEO tells Wall Street Journal “most bloggers are happy about Wellsphere.” If you disagree, send protest Tweet #wellsphere or leave comment below.
Here is the introductory form email sent out by Dr. Rutledge:
Hi Dr. Jones,
I was on a search for the best medical blogs, when I found you at X. I think your blog is great. I’d like to invite you to participate in the network of medical expert bloggers at Wellsphere, but perhaps I should explain a bit about myself and about Wellsphere as background.
My name is Dr. Geoff Rutledge, and, like you, I understand the power of the Internet to help people. I’m a physician (board certified in IM and EM) who previously practiced, taught, and carried out research at Stanford and Harvard medical schools, before I built and launched the first consumer ehealth service that became WebMD.com.
I now work with Wellsphere, which is a next-generation online platform that helps people achieve their health and healthy living goals – it is a major advance in the way people find and share information and services. Our platform connects millions of users with the valuable insights and knowledge from health leaders and medical experts like you — take a look at how the platform works at www.wellsphere.com. Stanford University was so impressed that they deployed our service for the entire campus (see stanford.wellsphere.com). We sell our service to employers and health plans – you won’t see today any ads or commercial services on our free public site.
I offer you the opportunity to be a featured medical expert blogger for a new Wellsphere community. Members and visitors will see your postings highlighted, featured, and clearly marked as authored by a true medical expert.
When you join, we will feature you on our medical experts page (here is the preliminary design for this page: http://www.wellsphere.com/medical-experts.htm), and I will highlight your participation and your postings in my personal blog, which is featured prominently on the homepage of wellsphere.com (Dr.Geoff’s MedBlog, http://medblog.wellsphere.com/).
We will republish the postings you’ve already written for you (through your RSS feed), and feature them not only on the community pages of the site, but also within a new dynamic magazine-like Wellsphere360 section, where we give users a comprehensive view of medical expert information, plus news, videos, local resources, and member postings on topics you write about. You can see a sample of a Wellsphere360 special section at http://www.wellsphere.com/Wellsphere360/diabetes-type-2.htm
Also, I will select the best medical bloggers to feature on our homepage at www.wellsphere.com.
Your posts will link back to your blog, so you will benefit from Wellsphere’s high ranking and large readership interested in your topic, which will give you more traffic, additional relevant audience, and a higher ranking for your blog. Wellsphere has well over a million visitors per month, and is growing rapidly.
If you would like us to feature you, just send me an email to Dr.Rutledge@wellsphere.com.
Geoffrey W. Rutledge MD, PhD
Here is a follow up email after I declined to join the network:
Hi Dr. Val,
We haven’t met, but I’ve been following your journey. We sent you an invitation to republish your blog from RevolutionHealth on Wellsphere, though I understood why that was somewhat problematic. I’m looking forward to seeing your new site at http://drvalblog.com/
Have you followed the advances that Wellsphere has made in creating a consumer-focused site that makes it easy to find both medical expert content and knowledge, and patient/community support?
If you would be interested in reaching the Wellsphere audience (now significantly exceeding that of RevolutionHealth, with over 2 million visitors per month), I would be pleased to extend the offer to republish your blog postings on Wellsphere.
We also could list you as a Notable Wellsite on topic pages of your interest (for which we ask only that you either list us on your blogroll, or take advantage of our free Health Knowledge Finder widget, or post an “I’m featured on Wellsphere” badge on your site.)
Here is a follow up email sent to a blogger who declined to join the network:
I just wanted to follow up on the invitation I sent you to be a featured blogger on Wellsphere.com. I was impressed with your blog at XXX, and invited you to be a featured blogger in the new General Medicine community. We can also promote your blog in our new dynamic, magazine-like WellPages (with no extra work for you)! If you’re interested in being featured and promoting your blog to the larger Wellsphere audience, please drop me an email!
Here is more information on how this works:
We republish your articles on our site, and include links back to your site. We also publish your profile with a link back to your site, and we feature you on special sections on topics that you write on, and in your topic-based community.
We will set up your profile if you don’t already have one, so you don’t have to do anything but give us permission to republish your content on our site. We don’t require a particular schedule for posting, though we have invited you to become a Wellsphere health blogger based in part on your history of posting on your blog.
Our growing network of bloggers (now over 1700) have told us they value what Wellsphere is trying to accomplish – helping people of all walks of life and across the spectrum of health to achieve healthier lives. They also appreciate the opportunity to reach the larger (and also rapidly growing!) Wellsphere audience, and to benefit from links in each posting that drive traffic back to their blogs.
We would be happy to include you in our network as we expand into health topics.
Geoffrey W. Rutledge MD, PhD
Chief Medical Information Officer
Here is an email from Wellsphere mistakenly sent to my webmaster (he’s not a blogger):
We are excited to recognize you in our new YES, WE CARE! Campaign that honors everyday heroes, like you, who put themselves on the front lines in the quest for a healthier, happier world by spending their time and putting their hearts and souls into helping others in need. We’re particularly excited to have this chance to honor you, for dedicating your time and writing to help people improve their health and well-being. We’ve nominated YOU as one of our Everyday Heroes!
As part of the YES, WE CARE! Campaign, we are creating a special video to highlight some of the amazing stories we’ve heard that demonstrate that caring for others is alive and well today all over the world. We would love to include YOUR story in the video! If you would like to send us a short video (cell phone or webcams are just fine!) about what moved you to start your blog, or to share a moving story of caring that you were involved in or heard about, we’d be happy to include it in the video. You can also interview someone you think is an Everyday Hero, or tell their story. Please keep the length of your video between 20 seconds and 2 minutes. The video can be very casual and definitely does NOT need to be professional or polished – just be yourself!
Please send us the video ASAP, and no later than Sunday, October 19th.
We can’t wait to see your videos and are looking forward to recognizing you and other Everyday Heroes you know for your extraordinary contribution to the world!
To submit your video, send us your video as an attachment via email to firstname.lastname@example.org. If you would like to send a video directly from your cell phone, just email me at Dr.Rutledge@wellsphere.com and I’ll send you the cell phone number you can send a video-text message to.
Geoffrey Rutledge MD, PhD
Chief Medical Information Officer
Here is an email from Wellsphere about their plans for a health blog conference:
This week, I’m excited to share the warm words we’ve heard about all of you and the early feedback we’ve heard about the Yes, We Care Campaign, and announce the world’s first Health Blogger Conference! We can’t wait to meet you in person…
Yes We Care!
The Yes We Care Campaign launched last week, and we’re thrilled to be able to honor you and your colleagues on the Map of Caring. The response has once again been quite dramatic. Many of you have already posted your Everyday Hero badges and the heartwarming Yes We Care! Video on your blogs. Here are a few of the comments we’ve heard about the campaign:
“I am thrilled to participate in your “YES, WE CARE !” Campaign and am most humbled in your nomination. What an amazing idea! Our blog continues with the hope of “paying it forward” and helping others, just as you are doing with Wellsphere. .. Thanks for doing such an amazing job!” – http://www.ranaesheart.com/
“Thank you so much for recognizing my site and the effort that went into creating it!!! It’s amazing people like yourselves that keep me going and make a contribution to the greater good of all !! thank you again my friends !!!” -http://liftheavy.wordpress.com/
“Here is the video from Wellsphere! It is very cool it’s a 10 minute video with people from all over trying to help heal the world! Awesome video guys!” http://thelifeofthomascslater.blogspot.com/
“I want to take this opportunity to thank Wellsphere for calling me a “Everyday Hero” for the lives I have touched. I want to say thank you for giving me that opportunity to do so.” http://ucanhope2.blogspot.com
Many of you commented that the Yes We Care video let you see and connect with other members of the Health Bloggers Network for the first time, and asked if we would consider organizing an event for everyone to meet and connect with each other. WHAT A GREAT IDEA!
I am very pleased to announce the world’s first Health Blogger Conference (“ HBC -09”)! This conference will be the largest gathering of health writers in history! The Conference will be by invitation only, and as a member of the Health Blogger Network, you will automatically be guaranteed an invitation. This will be a great place for you to meet fellow health bloggers, share best practices, discuss sources of ideas, learn how to promote your blog, and meet some of the most prominent figures in the world of health. There will be a series of organized information sessions and seminars, as well as fun events and ample opportunities for you to meet and mingle in a relaxed atmosphere. We will announce the location soon – somewhere you will enjoy a healthy, rejuvenating, experience.
If you’d like to get involved in the Conference, here are some of the opportunities available to you:
– become an organizer
– become a volunteer
– give a talk or seminar
– organize a panel presentation
– suggest a topic for a talk or a panel
– suggest a speaker to invite to give a presentation
Here Are Excerpts From Wellsphere’s Terms of Service Document:
…All Website Materials, including any intellectual property rights in such Website Materials, are the property of Wellsphere, its affiliates, licensors, or the designated owners, and are protected by applicable intellectual property laws. You should assume that everything you see on this Website is copyrighted unless otherwise noted, and may not be used without our written permission except as provided in these Terms…
Content You Submit to or Post on the Website
…You agree that any and all comments, information, photos, videos, feedback and ideas that you communicate to Wellsphere or submit or post to the Website or give Wellsphere permission to post to the Website (“User Materials”) will be deemed, at the time of communication to Wellsphere or submission or posting to the Website, to be the property of Wellsphere, and Wellsphere shall be entitled to full rights of ownership, including without limitation, the unrestricted right to use or disclose such User Materials in any form, medium or technology now known or later developed, and for any purpose, commercial or otherwise, without compensation to you. In the event that you have any rights in the User Materials that cannot be assigned or waived you hereby grant to Wellsphere a royalty-free, paid-up, exclusive, worldwide, irrevocable, perpetual license to (i) use, make, sell, offer to sell, have made, and further sublicense any such User Materials, and (ii) reproduce, distribute, create derivative works of, publicly perform and publicly display the User Materials in any medium or format, whether now known or later developed.
When you post your own copyrightable content on the Website or give Wellsphere permission to post your copyrightable content on the Website, you retain ownership of any copyright you claim to your submitted content. However, by posting your content or giving Wellsphere permission to post your content you automatically grant Wellsphere a royalty-free, paid-up, non-exclusive, worldwide, irrevocable, perpetual license to (i) use, make, sell, offer to sell, have made, and further sublicense any such User Materials, and (ii) reproduce, distribute, create derivative works of, publicly perform and publicly display the User Materials in any medium or format, whether now known or later developed…