the alternative fix

tom delbanco, m.d.
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Tom Delbanco is a primary care physician at Beth Israel Deaconess Hospital in Boston and a professor at Harvard Medical School. He is the former chief of Beth Israel's Division of General Medicine and Primary Care. Delbanco co-authored the seminal 1993 New England Journal of Medicine Article which showed that a surprising one in three Americans were using some form of alternative medicine, and few were telling their physicians about it. He remains concerned that many people continue to turn to unproven--and potentially unsafe--alternative treatments. FRONTLINE interviewed Delbanco in September, 2002 and in January 2003.

Can you define alternative medicine for me?

What are alternative medicines? I guess you can say they are things that you don't generally teach in medical school. They are things that don't have much of a scientific base yet. They're on the edge of what scientific medicine believes to be important. But I think it's silly to go so far as to say that prayer is an alternative therapy. It's silly to go so far as to say that massage is a alternative therapy. They are things like homeopathic potions, herbs, acupuncture, chiropractic. People will argue about what's alternative, what's mainstream? Everyone will have a different definition but that's the way I think of it.

What about the terms "complementary," or "integrative" to describe alternative therapies?

People want to use the word complementary and integrative these days and I don't like them very much, because they imply that they're accepted by the scientific base, and I think there's still a lot of question. But the basic notion is that it's not one way or another. People aren't saying if you have diabetes, don't take insulin but get an alternative therapy. They're saying, take insulin but also try this or that, because it may help the diabetes. They complement one another that way, and that's the notion of the word, 'complementary.' The word integrative I think is basically nonsense. It's a way of saying, let's get everything together and I don't know what that means, so I don't use it very much.

Why do people turn to alternative medicine?

There are an awful lot of reasons that people use alternative medicine these days. They read about it, they hear about it, and a lot of the news is positive. They invariably have friends who feel they've benefited from it. I believe everyone is always seeking something that, whether it's magic or not, holds the promise of improving the way one feels or maintaining health. I think quite frankly sometimes they're talked into it by people who are interested in making an extra buck.

We should be able to set up a system in this country that says to someone: before you sell it, you better be bloody sure that what you¼re selling is safe.

I think certainly at times people feel let down by us in scientific medicine and they seek other approaches. That can lead them to alternative medicine. Similarly, I think there are a lot of people who want to cover all [their] bases. It makes sense in that context to say, well, I'll do what the doctor suggests, and I'll also seek other aids that...may help. ...People who have devastating illness for whom the traditional medical field has sometimes not so much to offer; they always need that precious commodity called hope. They often turn toward anything that will bring them hope, and alternative medicines are wonderfully situated to do that because of the way that they are purveyed, and their advocates' stories.

You mean the way they're marketed.

There's no question that alternative medicines are marketed to two groups of people. One is the healthy - those who want to maintain their lives as long as possible and live a life of virtue, goodness and well-being. And then also to those who are terribly ill, from whom hope is sometimes being robbed and who will reach out for anything that brings hope, quite understandably. Alternative medicine knows how to go after those people very effectively. …

It seems as though in this period of scientific advancements, there are many breakthroughs and failures, reversals and contradictions. Is this why people are confused? Has traditional science failed them? I never thought I'd live in a time where we publish a study one week that says do this and a week later come out with a study that says do that. That confuses everybody, doctor and patient alike. … At one level, we have many patients alive today who, when I was young, would have never been alive. That's clearly by virtue of the science that we brought to their care. At another level, people still die of cancer and in a certain sense they die more often of cancer because we do better with other things.

People are confused and angry. They relate primarily to their own experience, understandably, or their family's experience. So and so has died with this awful disease, the doctors couldn't do a damned thing about it, in fact they sometimes made them feel sicker by virtue of the medicines they gave them. On the other hand, my other friend is still alive and might not have been, because of what medicine brought them. People are confused, they're ambivalent, they're angry at times, they're thrilled at times and that's very much the human circumstance.

How do all the differing messages out there, especially about alternative medicine, add to the confusion?

It's terribly confusing to be a person these days, whether it be a doctor or a patient. Should you eat eggs or should you not eat eggs? What should you do if your back hurts? What is the proper screening to prevent cancer these days, or heart disease? The messages that people get from the newspapers, from television, from the drug manufacturers, from their doctors, from the alternative medicine people are different, they're compelling. There are articulate people telling them what to do and they all give them a different message. It's an unbelievably confusing time. With alternative medicine, the messages are definitive, clear, very emphatic as far as I can see, and from what I've read, based on incredibly little scientific evidence. That troubles me a lot.

In your opinion, what are the messages of the alternative medicine industry?

What my patients tell me is that when they go into someone who practices alternative medicine, the message is very definitive. 'This is going to help you.' Certainly the ads you see or the signs on the drugstores or in the health food shop, there's no equivocation...Many people want to hear a black or white story and I have the impression that in alternative medicine, it's pretty emphatically delivered, more emphatically than I would be comfortable with.

Why do you think that is?

I think that the people in the field of alternative medicine are true believers. They're not as skeptical as those who've been trained in the so-called scientific method have been taught to be. People who market something are always emphatic and that's true in all kinds of medicine, including alternative medicine....It bothers me that the kind of passion that comes with the true believer can be misleading.

Let me give you a different example, and that is how you manage alcoholism. There's not much science yet in how to do better with people who abuse alcohol. And one of the reasons I think is that those in the field very often are those who've suffered from a disease and have overcome it. They've overcome it in a certain way that worked for them, and they then become rapidly convinced that this is the way it will work for someone else. So someone who's gone through AA says, AA is the way to get better. Someone who's taken a drug says the drug is the way to work. Someone who's had psychotherapy says, that's the way you do it.

The people in alternative medicine in my experience have had similar experiences. Homeopathy works for me therefore it will work for you. Acupuncture saved my back, you've got to try it, I know it'll work. We doctor types are more nervous about that... There's a fine line between giving good consultation...and offering something without the proper basis of fact. And I think we do that often in medicine, I think the people in alternative medicine do it far more often. …

Is alternative medicine more accepted now within the conventional medical establishment?

There's a terrific push for acceptance of alternative medicine in the medical establishment. I'm not sure that's really taken much hold. I think we do understand better that we should ask more about alternative medicine and patients' use of that and their expectations. But in the gut of scientifically trained doctors and other health professionals, there's still a sense that much more is promised than can be delivered, that we're dealing primarily with a placebo effect, which is a terrific medicine in itself. …

What role does the placebo effect play in the efficacy--or perceived efficacy--of alternative therapies?

My own view is that the real fascination in this is the so-called placebo effect. What does that do for people, what does it not do for people? How can we marshal it much more successfully in the way we help people?...I believe very strongly in placebos. I personally think we should give people placebos, tell them what they are and know that they'll help. My wife will swallow a pill when she has a headache and she'll be the first to say she feels better after she's swallowed it, knowing that it hasn't dissolved yet. That's the placebo effect. It works. I do the same thing.

Placebos help people enormously. They're cheap, they're certainly safe. I have no trouble with the notion that in the future we should say, here, take this, we have no idea why it works, it's sugar in a pill, it shouldn't cost you too much. If you pay more for it, you'll probably think it works better; swallow it, you'll feel better. That's the placebo effect. I think it's terrific. It works in many circumstances, no matter about recent papers that say it doesn't work, that's nonsense. It does work and we should be honest about it.

You take a homeopathic medicine, you grind up a spider, you bathe the spider parts in water, you dilute the parts so far that there's not one molecule of spider left, you put that water on a pill and you say, swallow it, it's going to make you feel better. There's no way that potion of water plus inert pill is anything different from a placebo. And I don't care how many papers will come out and say, this is scientifically proven to be different. It's nonsense.

...It will take a lot to convince me that [homeopathy] is more than a placebo, but it certainly costs a lot more than my offering someone a sugar pill and saying, swallow it, unless I charge a lot for that sugar pill. And actually I think that a homeopathic medicine is pretty much a sugar pill.

You feel homeopathy is ridiculous?

I visited a factory in France that makes homeopathic medicines. You see vats of dead spiders and they grind up these spiders and then they suspend the spider parts in so much water that not one molecule of spider can possibly, by everything we understand [through] physics, remain. ... To grind up a spider, suspend it in water, dilute the water so that you can't find any more spider, shake it a lot, stick it on a pill, call it a homeopathic medicine and then put it in someone's mouth and say, this is going to work has no scientific basis. To me it's basically nonsense. Some people will get better because people get better over time. Other people will swear it's terrific. Other people will be disappointed. What makes me mad is when people charge a lot of money for that... and say, "This is absolutely going to help and it's much better than a placebo." I think that's nonsense.

...I think if our hospital brought in a homeopath and put him or her on the staff, the doctors would go berserk, particularly if the hospital was giving that person resources which the doctor felt they should get themselves. I think some of the patients would be helped by that person, or would feel that way. How to weigh those facts in a time of shrinking resources is not easy.

What about people's assumptions or expectations that a certain therapy or pill will make them better?

One of the things alternative medicine is teaching us very well is how to study things better. Let's take expectations. Let's say we have a hundred people and we divide them into two parts and we give fifty of them a homeopathic medicine and we give the other fifty just the pill without the water sprayed on them and we say, which does better? That's called a double blind trial, that's called a randomized trial and neither the doctor nor the patient knows which pill he or she has taken.

But let's say by random chance in one group forty of the people came into the experiment thinking they were going to get better. And in the other group only ten people came into the experiment thinking they were going to get better. Guess which group is going to do better? The group with forty. We've never bothered to control for that in many of the scientific experiments we do when we try out quote, "real" medicines.

The alternative medicine people have reminded us of this, to control for expectations when you go into an experiment. So the actual scientific method of how we study things, whether it's the new penicillin or the new wonder drug in alternative medicine will be helped by our thinking more clearly about how we ask questions, how we control for expectations, for thoughts about placebos, et cetera. In that sense this has been a very healthy thing for the scientific world.

What about people's belief in more than just the placebo?

Where I go ballistic is when people imply or say that this is better than a placebo, when they don't know whether that's the case or not...To spend thousands of dollars out of pocket at a time when everyone is worrying about how to make it in a difficult circumstance economically, to spend thousands of dollars on something that is probably no different from something on which you could spend one dollar, a sugar pill, really offends me. When people try and convince people that something is more than a placebo...when there's no scientific evidence to say that other than their own experience, their anecdote, the last story they heard, I would be remiss to do that as a doctor...and other people in alternative medicine are equally remiss in doing that.

Is the availability of grant money partly responsible for the surge of interest in alternative medicine research?

Medical scientists and academics are taught from day one that they'd better be entrepreneurial if they're going to make it. No different from business or being a television reporter. Get your niche, get into a new area, and make it big, fast, while it's new. Alternative medicine is a beautiful example of that. There've been articulate, charismatic, bright, caring people who smelled this early, went after it, became prominent, and have done very well. They've probably done well financially, I don't know about that.

They're certainly national figures, they're household words. Some of them are beginning to ask some really interesting questions. Others I think are more on the speaker tour and writing books than they are being true academics. You can say that of many people in academia, in any form of academic life. It will shake out over time that there will be serious scientists in this field asking the serious questions within the field, most of which I believe will dwell on safety and the placebo effect.

One of the things I've noticed that is the difference between a real scientist and what I would call a not-so-real scientist is the person who comes in and says, I have an idea that such and such is the case in this circumstance and I want to find out if I'm right or wrong. That person doesn't care whether he's right or wrong. The difference between that and a person who says, I have an idea that this works and I'm going to prove it, is enormous. The latter person is biased. He or she is going to probably come out with a study that says this does work.

The other person says I'm going to write a good paper, I'm going to add to knowledge, and I don't care whether the paper says this doesn't work or this does work. That's the person that I think will have a great career in science and there are very few of them so far from what I can see in the field of alternative medicine. That's what makes me nervous.

I think you find very few people in alternative medicine so far who in their gut don't really care about how a study comes out. They don't care whether it's positive or negative. That's the real scientist. You're beginning to see more of them, those who come up with interesting questions. And I think they dwell primarily on the placebo or safety, who come in and say, is this herb safe or not, let's find out. Is this more than a placebo, let's find out. And really don't care about the way it comes out, that's the person who will make a mark that I will listen to.

What in the field of alternative medicine do you consider worthwhile to study?

I would certainly study what's safe and unsafe, in terms of interactions with other medicines that people take...I have a sense that some diseases if caught early can be cured or modified or missed because people managing them with alternative therapies may miss them and that's dangerous for society. I have a sense that people are paying a thousand dollars for something for which they might spend five dollars, called a placebo, where I wish they could spend nine hundred and ninety-five dollars on some other element of their life so they had a better quality of life. …

How much of what you do as a doctor is based on scientific evidence?

... I think a lot of what I do is based on some degree of science. But I also know that thirty years from now, I could look back and say, I can't believe I was doing that with my patients and that I believed this was working or that was safe. We learn a lot all the time. We discard therapies, and we embrace new ones, sometimes too quickly. But over time we're a lot better at what we're doing now than we were thirty years ago.

... I think that if people are spending zillions of dollars on homeopathic medicines and are being told that these medicines are better than placebos and will really make a difference, then those medicines should be subject to real scientific scrutiny using scientific techniques in which I and others will believe. I don't believe for a bit that you can't study these kinds of therapies just as well as you study quote, "traditional" scientific therapies. I think because of the social and economic forces going nowadays it's probably valuable to study some of them. But an awful lot of the studies we do these days, whether in scientific medicine or alternative medicine, are ridiculous.

Do the resources being thrown at alternative medicine these days stop good research from happening?

It's very hard to do good research when the people who pay you to do it hope, want, expect it to come out in a certain way. Harvard Medical School, where I am, got an enormous amount of money from a philanthropist who believes strongly in alternative therapies. I think it will be hard for the researchers [whose work is] supported by that person to write a hundred papers in a row saying it isn't worth a damn.

If you are paid by a drug company to test medicine X and your livelihood depends on being paid by that company, you probably, all things equal, are biased toward finding some good results from some of the things that drug company is asking you to study. That's the problem with having people with vested interests invest in research. It's very hard then to stand back and say, I really don't give a hoot how it comes out, I just want to do it well.

I suspect at times investigators feel pressured by those who fund them. And even if there isn't an explicit pressure, it's a little hard probably to go to sleep at night saying, oh my God, this thing is going to come out showing the stuff doesn't work, when am I going to get my next grant? ...That's the beauty of the NIH. The NIH funds studies and hopefully, unless it's affected in itself by lobbying interests, which can happen, hopefully that research will be done in as unbiased a way as possible.

Can you comment further on connections researchers have to parties that have vested interests in the product they're researching?

We can't find researchers anymore that don't have private funding. It's really amazing. You know America has changed, and in a way that I don't like. It is virtually impossible to find a clinical investigator in medicine these days who has not received some support from the pharmaceutical industry, or from an insurance company, or from someone who believes strongly in an alternative medicine. It's kind of hard to make a living as an investigator these days, at least in research universities, without the potential of getting tangled up in forces that may really bias the way you work. And in fact it's actually impressive how many people resist those biases, but they're always there.

What is the process that drugs must go through before they are approved and can be prescribed to American consumers? Is it the same for conventional and alternative medicines?

Before we can use a traditional scientific medicine, the FDA makes us go through many, many hoops that focus in large part on whether they're safe or not. When I give you a new medicine I'm probably more sure about it being safe than about it being effective. Now, in alternative medicine, by virtue of history and the way the FDA has been taken apart by the Congress in my view, you can buy anything you want right now. … The FDA was taken out of the picture by the Congress and by interest groups. They did not want the FDA having anything to do with what they could sell in health food stores or in pharmacies, or what they could advertise. They very effectively sidelined the FDA.

Today the [FDA] is beginning to get back into the picture only because some of these medicines are indicating real dangers for the public. Then they're allowed to come in and begin to do some studies. But it's way after the fact, and they don't have much power or energy or money to do that as far as I can see.

Do people understand lack of regulation?

I must say that I have enormous respect for patients and we always underestimate how much they know and understand. I would be very surprised, however, if the average patient had any understanding of what the regulatory process does or doesn't do. I don't think they really have a clue of...what a medicine has gone through before we can give them [that] medicine.

Similarly, I don't think they have a clue about how little has happened to stuff that they can buy in a health food store or in a drugstore that's alternative medicine. I don't think the average person knows much or frankly has an awful lot of interest, maybe until...they read horror stories about what goes through the testing process. They do hear horror stories about us a lot. They're beginning to hear them more in the alternative medicine field.

...It's complicated to think about how best to learn about a medicine's effectiveness and safety. Let's take thalidomide as an example. The proper process for a scientific medicine in this country is that the FDA makes the scientist and the drug company go through a bunch of trials before they release the medicine. They focus primarily in many ways on whether it is safe and also whether it's effective.

And then - this has been a more recent phenomenon - there's been [an] understanding that once it gets out to the people, you should still have a spotlight on the medicine for a long time because something may turn out about both its effectiveness or safety that wasn't understood initially with smaller numbers. Reports should come back to the FDA and if there's trouble, they pull it off the market. Thalidomide is an awful example of where in the early testing, there was not clarity about its possible dangers. It became abundantly clear, once it was out, that we had these awfully deformed babies being born as a function of the sleeping pill and it was pulled off the market.

In alternative medicine there's none of that first stage of testing. You can go in a drugstore, you can go into a health food store and buy something that the FDA is not allowed to test before the fact. Only now are there beginning to be some reports that says something that has ephedra in it from an herb may be very dangerous for your heart, or may interact with other medicines. The reports are coming back and the FDA is gingerly allowed to tiptoe into this area now, still very frightened by what the Congress has done to it as part of the political process.

Why we didn't learn from thalidomide?

The FDA is in a very difficult position. First of all, it's politically placed so that the Republicans and the Democrats can take equal potshots at it. And the big difficulty they face is speed. Half the people yelling at them are saying there's a medicine in Europe that has helped kids like my kid, get this new medicine out, don't be a roadblock. The other half of Americans are saying, remember thalidomide, if you'd been more careful you would have prevented all these babies being born with deformed limbs. The FDA is right in the middle of that conundrum. …

What's the motivation for the manufacturers of botanicals, supplements, etc. to study their safety?

I don't buy the argument that says, there's nothing [in it] for a drug company [to] study these things because they can't make money on it. As far as I can see, there are people driving around in very fancy cars who work for pharmaceutical companies that make generic drugs, who are still making money. I think we should be able to set up a system in this country that says to someone: before you sell it, you better be bloody sure that what you're selling is safe. … We do that with the penicillins, we do that with the antibiotics, we do that with the cancer drugs, we do that with the heart drugs. We should do it also with the alternative drugs.

What about the line of reasoning that claims herbal supplements must be safe because people have been using them for so long?

Some of the herbs that you buy over the counter have been used for thousands of years, of course. Many, many societies have spoken of their virtues and how they've helped. For us to be presumptuous enough in 2003 to say that it's time we study this and make sure it's safe sounds a little bit silly, doesn't it? On the other hand... given that we have all these new things we put into people's bodies now through science, and [we] see there might be an interaction or we hear reports of a disaster, then we have to say, hold everything, if you're taking "X" don't take "Y". If you're taking this, it may be dangerous to take that. We have to look at that in an organized way...

What are your thoughts on some of the more unconventional therapies for the gravely ill, like the Gonzalez pancreas cancer method?

One of the most important things we must never rob patients of is hope. Each of us in medicine, if we've been around long enough, have seen people with awful diseases who get better for some reason that we will never understand. Ninety-nine percent of them don't, but there's one story somewhere that at least in good conscience lets me offer patients hope. If the way of getting hope is to go to see someone and swallow a dead squirrel or get five enemas or have his or her hair analyzed, I don't really have a right to say, that's not something that should offer you hope, don't do it. People in the end have to determine what they want to do.

Where I go bananas is if the person who's dealing with the squirrels or the hair or the enemas says, let me tell you that this will work, this will cure your quote, "incurable" cancer, this will do it for you. That's when I go ballistic. But I can't in good conscience, if that person were saying, I have no idea if it works, but I've had one patient once who got better, do you want to try it? I can't then suggest to a patient, don't do it.

I've yet to find the person offering that kind of treatment who does talk that way. Usually it's with big headlines and stories and beautiful photographs of a smiling person walking around cured from a disease that I find is almost invariably incurable. That's where I get furious. [It's] false advertising, it's quackery, it's fakery. On the other hand, if I put my arm around someone and say, I really think it will help you to do "X". I've no idea if there's any science behind it, I don't know why I say it, I just sense it, try it, you may like it. I can't argue with that.

In these instances, is it just the placebo effect at work?

Placebo effect is very complicated. Number one I say, try this. It's the doctor, an authority figure, saying it. Number two I say, you've got to pay five dollars for this glossy pill that surrounds a piece of sugar. You've already put some of your own money into it. Number three, I say with my authority, this is something that's just sugar-covered by a surface. I have no idea in the world why it should make you feel better, but a lot of patients do feel better. I'm combining my authority, your five dollars, this shiny looking pill, and I'm giving it all to you.

That's a lot of a dose of placebo. It's a large placebo dose, if you will...There's a psychiatrist, Walter Brown, who studies depression and was fascinated by the placebo. He said, let me be honest with patients about placebos. I'm going to give depressed patients a sugar pill covered by a surface, tell them that it's a placebo, that I don't know why it works but it probably does in depression, take it, I'm going study it and compare it to the medicines we think are psychopharmacologically active [and] psychotherapy, and see what happens. He found that at least for mild to moderate depression, they were no different.

How does what you're describing apply to alternative medicine?

If you have a warm, caring, not-time-limited setting which is patient centered, which focuses on the music that patient may want to hear, which has the magazines that patient may want to read in the waiting room, and also has a high price tag attached to it that comes out of pocket (not covered by insurance), boy you are motivated then to get something out of that experience. That calls every bit of the placebo effect in my view into full throttle. You are ready to go. In fact, one of the things about human beings is, they like to justify what they did. When their friend says to them, hey, did it work? You say to yourself, at some kind of unconscious level, I spent money, I took time, I went somewhere, [it] must have been a rational decision, therefore I'd better say it worked. And it gets around.

What in your view are the dangers of alternative medicine?

One is sitting on something too long and missing a diagnosis for which an early intervention with scientific medicine would make a difference... And then there's a growing series of anecdotes and studies that say some of the herbs may not be as benign as we think, they may have in themselves dangers, and that also very importantly they may interact in ways we don't yet understand with other medicines people are taking. Most people don't just do alternative medicine or traditional medicine. One of the things we learned is they do both, and where they interact may be dangerous.

Do you, as a doctor, resent the competition from alternative practitioners?

I think rabbis and priests, teachers, alternative practitioners, and doctors help people. And I'm delighted by that fact. I don't like people who don't tell the truth or are false advertisers or make promises that are based on nothing... If I feel that I've got other people in the area of healing doing that, I think it demeans my profession. I don't like that.

But I think a lot of people in alternative medicine are very well meaning, very well intentioned, very ethical, care passionately about what they're doing and do it to the best of their ability. I have no problem cohabiting with those people. I don't like those who are taking advantage of people in order to make more money and are not doing much more than that...It's when people make claims that are dishonest, for self-aggrandizement, for profit, [or] that take advantage of other people that I get nervous. But I will be the first to say, there are lots of doctors doing that. I'll be the first to say that there are lots of people in other fields doing that.

Is it ethical for hospitals to offer alternative services?

The question of what's ethical in alternative medicine is very complicated. My own view is pretty simple. If you say to someone, we've got something here that may help you, I have no problem with that at all. On the other hand, if you say to someone, we've got something here that's better than a placebo, that's better than another medicine, and there's no basis in scientific fact to make that claim, I get furious, because it's misleading...They are selling something to someone who is often poorly equipped to evaluate the risks and benefits of what they're selling, who often has to pay a lot of money for that, and who often might gain more from going away for a weekend and taking it easy, or buying a good book or going to a concert, or just stop worrying about their own health. …

One of my real fears about hospitals getting into the business of alternative medicine is that it will be offered to the people with money, but poor people won't get them. The people who have the biggest burden of illness, the people in most need of everything are those who don't have any dollars. One of the things I hate about some of the things I see in hospitals now is the growing push toward the two-class system of care. We'll give you everything if you've got some dollars and if you don't have them, please stand aside. Alternative medicine is a beautiful example of that.

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posted november 4, 2003

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