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.
Better Health’s policy writer, Gwen Mayes, caught wind of an interesting new conference being held tomorrow in Miami. She interviewed Ken Thorpe, Ph.D., one of the conference organizers, to get the scoop. You may listen to a podcast of their discussion or read the highlights below. I may get the chance to interview Billy Tauzin and Donna Shalala later on this week to get their take on healthcare reform initiatives likely to advance in 2009. Stay tuned…
Mayes: Tell us about the upcoming conference in Miami on January 28th called “America’s Agenda: Health Care Policy Summit Conversation.”
Thorpe: The conference will start a conversation on the different elements of health care reform such as making health care more affordable and less expensive, finding ways to improve the quality of care and ways to expand coverage to the uninsured. The conference is unique in that we’ve brought together a wide range of participants including government, labor, and industry for the discussion, many of whom have been combatants over this issue in the past.
Mayes: Will there be other meetings?
Thorpe: This is the first of several. There will others in other parts of country over next several months. President Obama and HHS Secretary Designee Tom Daschle have talked about engaging the public in the discussion this time around. So part of this is an educational mission and part of it is to reach consensus among different groups that have not always agreed in the past.
Mayes: What encourages you that these groups will be more likely to reach consensus now when they haven’t in the past?
Thorpe: The main difference is that the cost of health care has gotten to the point that many businesses and most workers are finding it unaffordable. In the past, most businesses felt that, left to their own devices, they could do a better job of controlling health costs by focusing on innovated approaches internally. What we’ve found, despite our best efforts, working individually we haven’t done anything to control the growth of health care spending. The problems go beyond the reach of any individual business or payer and we need to work collectively.
Mayes: How will health care reform remain a priority in this economy?
Thorpe: The two go hand in hand. As part of our ability to improve the economy we’re going we have to find a way to get health care costs down. Spiraling costs are a major impediment to doing business and hiring workers. To the extent we can find new ways to afford health care it will be good for business and workers.
Mayes: Health information technology is also an important aspect. What are the common stumbling blocks to moving forward?
Thorpe: There are three issues we have to deal with. First, we have to have a common set of standards for how the information flows between physicians and physicians, and with payers and hospitals. What we call interoperability standards. Second, we have to safeguard the information. Finally, cost is the biggest challenge because most small physician practices of 3 or 4 physicians don’t have electronic record systems in place. To put in a state-of-the-art system can cost $40,000 per physician and most cannot afford this expense. I think the stimulus bill will provide funds to help with these costs.
Mayes: There’s always growing interest in the patient’s role. How will this be addressed?
Thorpe: We have to find a better way to engage patients in doing better job of reducing weight, improving diet and those with chronic disease to follow their care plan they worked out with their physician. We also want to make it more cost effective for patients to comply with the plan. Patients who comply with health plans will have better outcomes at lower costs.
Mayes: Who’s on the agenda in Miami?
Thorpe: It’s at the University of Miami so it will be hosted by President Donna Shalala who was Secretary of HHS under the Clinton administration so she is well versed on health policy. Also attending is the head of PhRMA, Billy Tauzin, a former Congressman and former majority leader of the House, Dick Gephart. There will be some lay people as well for a nice cross section of consumers, labor, providers, business and others.
Mayes: How can people learn more about American’s Agenda and the conference?
Thorpe: The executive director of American’s Agenda is Mark Blum. He can be reached at 202-262-0700 or at America’s Agenda.org.