Disruptive Women is pleased to introduce you to our May Man of the Month—Charlie Inlander. You can read all about Charlie’s remarkable career and learn from his astute insights and observations as Glenna Crooks sits down and talks to Charlie. Enjoy the conversation. Let us know if you agree with Charlie’s answers.

I’d like everyone to meet Charles “Charlie” Inlander. Charlie is currently an international health marketing, media and communications consultant and was formerly the President of the nonprofit People’s Medical Society.

He is a faculty lecturer at Yale University School of Medicine, an adjunct faculty member at the Chicago-Kent College of Law, a Fellow of the Institute for Science, Law and Technology at the Illinois Institute of Technology and on Public Radio International’s MARKETPLACE and has appeared on programs including Oprah, Donahue, Today, Good Morning America, Dateline NBC, 48 Hours, 20/20, Geraldo, NBC Evening News, CBS Evening News, ABC Evening News, and The News Hour with Jim Lehrer.

He is a founder of the Civil Justice Foundation and serves, or has served, on the boards of Consumers for Civil Justice, the National League for Nursing and the Pennsylvania League for Nursing, and advisory boards of the Citizen Advocacy Center, the Primary Care Management Association, the American Academy of Family Physicians, HealthMarket and Bottom Line/Personal publications. He was a columnist in Nursing Economics and a contributing editor for Medical Self-Care magazine. He has authored over a hundred books for health care consumers and articles regularly appear in such publications as The New York Times, Glamour, and Boardroom.

Charlie and I share Midwestern, Chicago-area roots, but that’s not why I like him so much. Yes, he’s smart, but he’s also nice. I mean that. He’s nice. Charlie and I don’t agree on everything but I know when we disagree, that’s he’s coming from “a good place” of true advocacy origins. There is not a mean bone in his body – which, above all, is probably the secret of his effectiveness. Charlie can deliver the toughest messages you might not want to hear, but you’ll like him while he’s doing it. There is something wonderful in his heart that shines through.
I hope you enjoy meeting him in this interview as much I’ve enjoyed knowing him.

Charlie,

It is so great to be able to talk with you for this Disruptive Women forum. We’ve never had a dull conversation and I know you won’t disappoint me this time, either. You were involved in advocacy long before me, I’ve learned much from you and want to talk with you about three issues today: first, your experience as an advocate; second, how today’s advocacy is different; and third, about your views on the current state of play in national health care today.

First, about your experience in advocacy generally.

Q. It’s an ‘interesting time.’ You’re the advocate’s advocate. What’s your advice to advocates for patients today?

A. Put yourself in the patient/consumer’s shoes. I learned at a young age that my experiences and views were not always the same as those I wanted to help. For example, I came from an upper middle class family and grew up in the nicest suburbs of Chicago. As a teenager in the early 1960’s I was involved with the civil rights movement, going into the inner city to work with kids in those neighborhoods. We would help them with school work, volunteer at community building programs, etc. But I saw that most of the time, we were doing the work for them instead of teaching them skills we had. And, of course, we left each day and went back to our suburbs. They still had to cope with their environment. From that, I realized that the most effective advocates are those who empower the people for whom they advocate – teaching them the skills, know-how or information necessary to take on the challenges they face.

Then in 1965, when I came to Washington, DC for college, I became involved with civil rights issues there and the anti-war movement. At the time, I thought my best skills were as an effective organizer and speaker and tried to pass those along. I never felt that just going to a march or protest meeting was enough. I believe that if you are taking on a cause, your job is to help win over as many supporters as possible so that even if you are not there, they can fight the battle on their own.

Q. How is today’s advocacy compared to civil rights and the rights of the developmentally disabled movements during the 1960’s and 1970’s?

A. The biggest difference is physical presence! Back in the 1960’s and 1970’s, there was no internet and long distance phone calls were expensive!! So we had lots of meetings! We did door-to-door canvassing. We printed flyers and leaflets and took them to stores, corners and malls, passed them out and talked face-to-face with people. We went to municipal, county, state and federal power centers. We marched – when that was useful – and met in person with officials who either blocked change or could help us promote change. We developed camaraderie and a shared sense of purpose. The “enemy” knew who we were and we knew them!

Of course, we also wrote letters and organized major mailing campaigns, but more than anything, we made sure we had a visible physical presence wherever we were. Our strategies were built around that physical, face-to-face work.

That is lacking today. Various movement organizers today use the internet as the primary vehicle of advocacy. It’s successful, but only up to a point. Consider the Iraq War. It is as unpopular as the Viet Nam War, but I have yet to see any major marches on Washington against the Iraq War. Instead, Congress and the White House are flooded with emails – which are rarely read by members of Congress anyway. Senders get auto-responses, that’s all. And letters today are also not as effective since mail is screened for anthrax and other hazards, often not even reaching any important desk.

As for uninsured Americans, why no march on Washington – yet? We have all come to believe that others will do it for us. So the uninsured grow in numbers, the wars go on, the gap between the haves and the have-nots widens and people are lulled into thinking that they are more engaged because of the digital age. They are not and consumers are losing out as a result.

Q. Has watching – and participating in – today’s health advocacy given you any ideas about what you wish you had done years ago on those fronts?

A. Actually, just the opposite. I wish we were more successful bringing those strategies from 30 and 40 years ago into the health advocacy movement today. When we started the People’s Medical Society in 1982, we empowered the consumer. Consumers didn’t know that 8% to 10% of all people admitted to a hospital acquired an infection while they were there. They didn’t know that they had the right to ‘say no’ to a hospital treatment. They didn’t know that generic drugs were as equally effective as brand name drugs in 99% of the cases. They didn’t know that medical licensing boards held disciplinary hearings against doctors in closed session and that the doctor could have legal counsel but the patient or family member advocate was not even permitted to attend.

We had two goals. First was to reform the health care system to be more responsive to consumers and, second, to empower the consumer with information about health care they didn’t have. We became very popular with the media and the public. We focused on changing the consumer, knowing that if we did that, providers and policymakers would be forced to respond. I think that worked. Consumers today are more assertive, more questioning and more informed.

I wish we had been able to more effectively organize health care consumers into groups to confront the system face-to-face. Even now, on the local level we should confront hospitals and providers who do not release quality data or are clearly providing less than stellar care. We should more directly challenge the failure of providers to provide real charity care, not just claim that they are. We should go face-to-face with policymakers demanding they address access issues and provide better oversight of insurers and providers.

Second, let’s turn to your widespread access to health care leaders in both public and private sectors.

Q. You have direct access to so many leaders in the public and private sectors of health care – and beyond. If you had the President’s ear and could recommend some folks for his top team, who would you name?

A. The President needs to put together a team that operates on three levels. First, is a White House health care team that can work effectively with Congress to assure that the reform agenda happens. They need to know the fundamentals and the politics of getting things through Congress.

At the second level, he needs highly skilled administrators in HHS – and other departments with health care components – who can make programs work. Yes, the Secretary of HHS is an important player and the Director of the Center for Medicare/Medicaid Services (CMS) is even more important! Huge sums of federal dollars go to health care – we need very smart and aggressive program heads to get maximum value.

Then there is the third level. The President and his health team need a very strong and diversified group of public advisors to help guide and vette health reform. These should be people who can look beyond their own experiences – as I learned early in advocacy – and areas of interest, at the bigger picture. They should advise on whether ideas are going to really meet the needs of the public. He did this with the external economic team – people like Warren Buffet and Paul Voelker – and he needs that in health care as well.

Can I name names? Sure. I would suggest George Halvorson, CEO of Kaiser Permanente who has wonderful ideas about health reform and access. Claire Fagin, retired Dean of the School of Nursing at the Univ. of Pennsylvania, one of the smartest and skilled health care leaders I have ever met. Lowell Levin, professor emeritus, at the Yale School of Public Health, who has long been a champion of the rights of consumers. Lori Andrews, Professor of Law at Chicago Kent College of Law, probably the leading voice in the protection of health care consumers rights in this era of new technologies. Don Berwick, from the Institute for Healthcare Improvement, a champion for quality care. And there are many others like them. I would then add long time consumer advocates: Gloria Steinem, Julian Bond, Marian Wright Edelman and people from local health advocacy groups, who would assure that proposals meet consumer needs first!

Q. Of the skills you see among the private sector leaders you know, which are those that are the most needed by government policy makers today?

A. Knowing when to cut bait!

Top private sector leaders know that when something is not working you dump it and move on. Throwing good money after programs that don’t work is poor leadership – a waste of resources. A perfect example is the Medicare Advantage program. It has always been more expensive than the standard Medicare program, has not demonstrated better care and is complicated for consumers to use or understand. Only program operators have benefited. Thankfully, President Obama has already seen this and I am hoping he dumps it soon.

Q. Some of the current appointees for the senior team in health care come with lots of government experience. Is that a liability for their work as it lies ahead, or an asset?

A. Having past government experience is not a bad thing. Knowing how to move legislation through Congress or effectively administering a program in an entrenched bureaucracy are important skills to have. But in the long term, the President will need ‘out of the box’ thinkers who are not tied-down by the “Way we did it under Bill” or “We could never get the states to go along” mentality.

Doing that will require having people around who start with the health care consumer and ‘work back’ in their way of thinking. In my opinion, the health reform failures of the past have occurred because the President’s people have been too focused on avoiding offending and hurting providers, insurers or companies in the pharmaceutical or device businesses.

Now let’s turn to the current state of play in DC and your opinions on that.

Q. How would you rate the new health team that President Obama is assembling?

A. Too early to tell. The President produced a disappointing budget figure and passed the ball to Congress to come up with a detailed plan within that budget. That opened the door to special interests – and they could really mess it up. That’s what happened with the Medicare Part D drug benefit; it is turning out to be a pretty mediocre program from the consumer and cost standpoint.

Q. What are the most difficult of the challenges they’re up against?

A. Medical and health care corporate lobbies. First Lady Hillary Clinton encountered this when she tried for reform. Every medical and corporate health group pledged support and agreed ‘now is the time.’ Support waned as the drafting began and an interest group didn’t get what they wanted. Attempts at reform were undermined. I’m sure the President and his team know that, but knowing is far different from overcoming.

Then there is the money. The President’s number over the next ten years is far from adequate – it won’t get everyone covered, no matter what the model. He just can’t count on eliminating waste and poor programs to make up the difference. I wouldn’t. Plus, it appears that a significant number of Congressional members, including some Democrats, worry about health care costs given all the other economic issues we face and may try to water down any major and sustainable long term reform.

Q. Reasonably, how well do you think they’ll do in addressing their agenda?

A. I am optimistic that something meaningful will pass. I have suggested that Congress pass legislation phased-in over 5 – 10 years to assure that every body in America is covered. Each phase would be spelled out and budgets would be sufficient. By taking an incremental approach – not to legislation, but to implementation – we can find out what is working or not working, fix or tweak what needs to be fixed or tweaked, and allow the health care industry to ready itself for the next step. This is what President Kennedy projected in our going to the moon. It took nine years, but we made it.

Q. Health care seems even lower on the list of consumer concerns these days, eclipsed by the economy. Given that, will it be easier or more difficult to enact changes?

A. For consumers, health care is a centerpiece of the economy. Polls show that people’s biggest fear is losing their job, and their health care benefits with it, or losing their benefits if their employer cuts back. The Labor Department says that for every one percent rise in unemployment, we see 1 million more people uninsured. That means in the first three months of this year, 2.5 million more people lost health insurance. That will make it easier for changes!

I really appreciate this Charlie, and in closing just two more questions.

Q. What are your best hopes? When Amy brings home your future Grandchildren, what do you hope their health care world will look like – and please, no platitudes here….

A. My mind has been the same for 40 years. I want a national health insurance program that assures everyone has basic coverage – like Medicare with maternity and better mental health benefits! It can be administered by private insurers, who could offer supplemental policies to this national insurance program.

It makes sense. Medicare is the most efficient health program in the world, with just 2% overhead. It gets the lowest prices. Anyone walking into a doctor’s office or hospital should have the same card. Gaps can be filled, as they are now under the Medicare program, with supplemental insurance. We cannot keep an employer-based model in the long term. We are seeing why in terms of the economic crisis and in terms of how health costs burden companies competing globally.

Q. In the meantime, what keeps you up at night? Where do you most wish you could have influence today?

A. What keeps me up is the growing number of uninsured. My wife Dale and I have close relatives who are uninsured – and they both work full time. They have chronic conditions, put off seeing doctors, are unable to afford surgeries that will improve their employment situation and take care of their kids. This is just one family. There are tens of millions more like them. It’s a disgrace that they have to go begging for core health care.

Where I wish I could be more influential is in forcing policymakers to once and for all address this issue. It can be fixed. President Johnson rammed Medicare – and just two years later Medicaid – down the Congressional throat after 18 years of debating it! President Obama needs to do the same. The public needs it – now!

This entry was posted on Tuesday, May 5th, 2009 at 6:59 am and is filed under Man of the Month, Policy, Politics. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed.