For more than a decade, Laura Fiori, 38, of Mt. Morris, Pa., has been struggling with severe, crippling rheumatoid arthritis (RA). She has run through a number of aggressive conventional treatments without success. Desperate for relief, she contacted several rheumatologists to ask about alternatives, but they were scornful.

So when a potent, new drug also seemed to be making no difference, Fiori added a popular alternative supplement to her regimen - and didn’t tell her new doctor. Soon, she was feeling and functioning better than she had in years.

She doesn’t know if this is due to the new drug, the supplement or the combination. And she didn’t want to tell her rheumatologist.

“If I did, he’d laugh the way they all do,” says Fiori, who at first didn’t want to be identified in this article because she didn’t want her doctor finding out about her experimentation.

Don’t Ask, Don’t Tell

According to two Arthritis Today surveys, Fiori isn’t unusual - either in her use of an alternative therapy or in her reluctance to tell her doctor. Through the surveys (see “Alternative Attitudes: What Doctors and Patients Really Think,”) and through interviews with respondents, we found a disturbing picture of what’s happening - or, rather, not happening - in the exam room.

On one hand, we found people with arthritis want their doctors’ advice on alternatives - and, on the other hand, we found that doctors want to know which alternative therapies their patients are using. But like spouses caught in a bad marriage, neither side seems to be taking the initiative to improve communication. Only 40 percent of patients are telling, and only 40 percent of doctors are asking.

This is alarming news: Patients who don’t confide in their doctors could be setting themselves up for complications, especially if they are taking herbs and other dietary supplements that could interact with prescription or over-the-counter drugs.

And these patients may be putting themselves at risk for no reason. The other eye-opening finding from our survey is that that doctors aren’t as negative about alternatives as patients seem to think.

AT found that 18 percent of arthritis doctors responding to the survey describe their practice as “integrative,” combining alternatives with conventional medicine. Moreover, 85 percent of all doctors responding say they think some alternatives have value, and 49 percent recommend some alternatives.

What’s going on here? Why are patients and doctors so reluctant to level with one another?

We spoke to survey respondents and expert observers of medicine, and discovered some revealing insights into the “dangerous divide.”

The Revolution Is Now

Experts agree: Whatever your opinion of alternative medicine, it’s here - for better or worse, and with a range of therapies that includes the good, the bad and the useless.

A 1998 Harvard University study showed that nearly half of us have tried some kind of alternative medicine. We are spending billions on herbs and supplements, and in 1997, made more visits to alternative practitioners than to primary care physicians. Many major insurers are covering some alternative therapies, and most medical schools now offer classes, courses and even programs in unconventional therapies.

There are also cultural influences at work. Doctors are no longer on a pedestal as they once were. Patients know more, and are demanding more, says Dorothea Lack, PhD, assistant clinical professor of psychology at the University of California, San Francisco, who specializes in the psychology of medicine. “In the past, only doctors had access to medical information,” she says. “Now anyone can find it on the Internet, in the library, and in ads aimed directly at patients. And so much of that information is about alternatives.”

Those with arthritis and other ills that can’t be cured are the most likely to be looking for alternatives, says Brian Berman, MD, director of the trailblazing Complementary Medicine Program at the University of Maryland - one of the few in the nation - that trains doctors in integrative medicine. Discouraged by what conventional care has to offer, he says, “Patients want ways to cope better with chronic ailments.”

The Doctors, They Are A’Changing

In the recent past, most doctors would say, “That’s quackery,” notes Dr. Berman. But doctors have begun to change. “More patients are finding doctors who say, ‘That’s very interesting - I don’t know much about it,’ ” he says. “This is a shift from the past.”

“Doctors are changing in response to changing times, patient demands and economics,” says Terry Stein, MD, director of clinician patient communication at Kaiser Permanente, Northern California. “This interest in alternatives is a wake-up call for us. It reflects dissatisfaction with mainstream medicine.”

Kaiser Permanente, a major HMO located in the West, now offers many therapies once considered on the fringe, such as meditation, acupuncture and yoga.

“What used to be called quackery is beginning to go mainstream,” says James McKoy, MD, a rheumatologist at Kaiser Permanente in Hawaii who practices integrative medicine.

To be sure, there is still staunch resistance. In response to our survey, Gerald Weismann, MD, professor of medicine at New York University and past president of the American College of Rheumatology, calls the integrative medicine movement “a return to barbarianism, a rejection of reason in favor of the irrational.” Most alternative practitioners, he says, are “quacks” - and therapies that have not been FDA approved and tested should not be used. Period.

An internal medicine specialist from New Jersey told us, “Most alternative therapies are fraudulent. The driving force behind their sudden popularity is purely monetary. Even some academic centers have jumped on the alternative bandwagon because they see a chance to make a buck.”

But other doctors say the alternatives movement is too widespread to ignore.

“It’s ludicrous for us to turn our heads from what millions of people are doing,” says Patricia Maclay, MD, a rheumatologist in Orlando, Fla. “We need to help our patients understand the role of science, and help them weed through this vast garden of products.”

Physicians with an integrative practice such as Wesley Beth Reiss, DO, of Huntington, NY, say they try to keep an open mind. “We as physicians no longer have the option or the right to say, ‘Forget it, that’s foolish,’ ” she says. “There’s just too much evidence that some of these things do help people. And too many people are using these therapies. We need to be able to guide them.”

Some doctors are discovering it may be good business as well as good medicine to know more about alternative therapies. Several doctors interviewed said patients seek them out because of their interest in alternatives. Others told us they’ve heard doctors say they had to learn more about alternatives because they were losing patients.

Thomas Whalen, DO, a Philadelphia-area rheumatologist, found his integrative practice so popular it was bought by Thomas Jefferson University and is now part of the school’s Main Line Division health system.

Some doctors, such as Nadine Loane’s rheumatologist, have been changing along with their patients. Loane, 48, a nurse in Easton, Pa., has small vessel vasculitis, rheumatoid arthritis and osteoarthritis. A decade ago when she first started seeing her rheumatologist, she says he wasn’t interested in alternatives. But his openness to alternatives has grown along with her interest.

“He’s willing to see me try things he thinks won’t hurt me,” she says, “including acupuncture.”

Support from her doctor is essential in helping Loane cope with her disease - and with the spectre of joint replacement surgery that’s coming up soon. “It’s made all the difference. If I can’t tell my doctors every single thing about my life, then I don’t want them,” she says. “They’ve got to be part of your care - and if they truly care about you, they are actively looking for ways to help you, and openness to alternatives is part of it.”

Secrets, Lies & Bad Medicine

Even though doctors say they are becoming more open to alternatives, our patient survey and interviews indicate many patients don’t believe it.

“Approximately 90 percent of the patients who attend my seminars on complementary medicine never talk to their physicians about the many alternatives they are using,” says Dr. McKoy. “Many have stopped all prescription medicines because of fear of side effects, and don’t even tell their doctors.”

Dr. McKoy and others put the blame on physicians. “When I lecture on alternative or complementary care, patients are shocked that a physician is embracing this type of treatment,” he says. “Patients usually encounter a very negative and sometimes hostile doctor when they ask about complementary care.”

Patients tell Dr. McKoy their doctors say things such as, “If you want to throw your money away, go ahead, you’ll be sorry.” “If you take this stuff and you get worse, it’s going to be difficult for me to treat you.” “If you are using that, don’t come and tell me.” And, in what sounds like a threat to some patients: “If you want me to be your doctor, then you take what I give you.”

When doctors do ask if patients are using alternatives, says Ronenn Roubenoff, MD, a rheumatologist at Tufts University/New England Medical School, “they ask it with a body language that’s very negative.”

Even if you don’t put any stock in a therapy a patient asks about, it’s good medicine to listen, says Dr. Maclay. “As a physician, I do not encourage the use of herbals,” she says. “But as a human being interacting with another human being, I am open to discussing it.”

Dr. McKoy says, “I think [doctors seem so negative] primarily because they are ignorant in this area, and afraid to admit it to the patient.”

And several doctors agreed with that assessment. They say they just don’t ask about or discuss alternatives because they don’t know enough to have an opinion. Often, doctors don’t realize how negative their silence can be to a patient who sees it as disapproval, or how hurt and insulted a patient can feel when they are scornful.

Joan Hensel, 46, a York, Pa., nurse, says she’s seen that over and over again in the 19 years she’s had fibromyalgia. One doctor called acupuncture “voodoo” and denigrated her for even asking about it.

Dr. Whalen says he has recommended alternatives and had some patients ask him not to tell their referring primary care physicians.

Katherine Smiffen (who wasn’t willing to use her real name), 44, says she’s convinced her doctor will drop her if she tells him she’s using alternatives. She lives in a small Florida town and says she’s afraid she will be “blackballed” with other doctors and that she’ll ultimately become unable to find a local physician to treat her lupus.

Why Some Doctors Resist: The Laetrile Legacy

Yet there are compelling reasons why some doctors are leery about patients experimenting with alternatives.

Doctors told us they are concerned about drug-herb interactions, and that patients will abandon proven medications for an unproven remedy.

Moreover, “There’s a lot of confusion and controversy about what’s useful and what may be harmful, and not a lot of solid scientific data,” says Leigh Callahan, PhD, who served as lead researcher on the AT surveys and who is associate director of the Thurston Arthritis Research Center at University of North Carolina at Chapel Hill.

According to Dr. Berman, “A lot of the therapies do not have a scientific rationale, or convincing evidence that they work, or even that they are safe.” Most doctors in practice today don’t have much experience with alternatives, he says. “We were not trained in any complementary therapies in medical school, and we fear the unknown.”

Practitioners can see alternatives as a threat to the doctor-patient relationship. When a patient rejects a treatment for an unknown remedy, “It’s threatening to think something you didn’t learn in medical school could help as much as mainstream medicine,” says Callahan.

There’s no strong regulation currently in place to protect consumers (since laws were loosened in 1994), and flacks and hucksters abound, especially in the exploding field of herbs and dietary supplements, which is rife with “miracle cures” that promise to do everything but your dishes.

These unproven claims raise the ire of doctors. “Pharmaceutical companies are required to spend millions to prove their claims,” says Terrence Forster, MD, a rheumatologist from Doylestown, Pa. “[Some] companies make money on products with no proof, and no quality control. I tell my patients, ‘You have to realize these companies do not have your best interests at heart. If you want to take a pill to make your symptoms go away, then you should at least take one that has scientific evidence to prove it works.’ ”

Several doctors cited dangerous scams from the recent past, such as the laetrile cancer “cure” that hastened patients’ deaths by diverting them from effective treatments, and illnesses and deaths from contaminated supplements like L-tryptophan. And it’s nearly impossible to keep up with new supplements.

Even if supplements aren’t dangerous, they can be a waste of money for patients, especially the elderly who are on limited incomes. “The likeliest thing is that people are making expensive urine,” says Dr. Roubenoff. “They are peeing out $2 a day of supplements.”

Doctors are frustrated by patients who turn to alternatives as a quick fix, looking for a magic bullet that will “cure” them without having to make any lifestyle changes. These are the same patients who ignore sound mainstream medical advice, says Dr. Whalen.

People can’t count on supplements alone to fix what ails them. “You can take supplements until the cows come home and if you aren’t doing anything else, you are not going to significantly improve your health,” says Dr. Reiss. “Health means making difficult changes to your lifestyle - to get enough rest, to eat correctly, to exercise and meditate, to nurture and feed the mind, body and spirit.”

Back to the Future: A Blend of the Best?

There’s no doubt the doctor-patient relationship has undergone a quantum shift in the past decade. Given this trend, what does the future look like?

For some older doctors like Richard S. Koch, DO, a family practitioner in Olympia, Wash., the trend is back to the future: He graduated from osteopathic medical school in 1938, “before antibiotics, when many of these alternatives were the medicine,” he says. Modern medicine has come a long way since then, and he thinks the move to integrate mainstream with unconventional medicine is a positive one. “It will provoke more money to be spent on natural health, and on research to determine which of these therapies is of value,” he notes.

According to Dr. Lack, it will take good hard science to convince most mainstream doctors to use some alternatives. “Doctors are trained to believe in science, and there’s a lot of bad science [in alternative medicine],” she says. “At a very basic level, that offends doctors. They need proof - and they don’t want to hurt their patients.”

That evidence may be available in the coming years. The National Center for Complementary and Alternative Medicine (NCCAM) has a $50 million budget for studies on alternatives. An increasing number of scientific studies are showing some benefits from alternatives such as meditation, acupuncture and yoga. Medical schools are already training doctors to look at alternatives with an objective eye.

“Increasingly, you are going to find doctors willing to discuss alternatives with you,” says Miriam Wetzel, PhD, of Harvard Medical School, who conducted a recent study showing the increase of alternatives in medical school programs. “It’s impossible now for doctors to ignore the number of patients turning to complementary therapies. And let’s give doctors credit for wanting to help patients.”

There will be some holdouts: “Some fear - and rightly so - these therapies have side effects,” says Dr. Whalen, “but some who object are members of the old guard - this is their last hurrah.”

If doctors don’t step in to learn about alternative medicine, they will run the risk of leaving the field wide open to less qualified practitioners and even charlatans - those with less (or no) medical training who will be happy to offer these therapies.

“There’s a lack of good guidance, and that’s where I see our role as MDs - to step up and be leaders and be the ones who see that medical care is balanced,” says Loretta Baca, MD, who has an integrative practice in North Platte, Neb. “We need to keep patients from getting hurt and help them get better the fastest way possible.”

“Patients are looking more and more for a doctor who is knowledgeable about alternative as well as conventional medicine,” says Wetzel. “I think this is the doctor of the future: one who can help patients explore all options, and who has taken the time to investigate and get to know alternative therapists.”

Ice Breakers

More and more, patients who are opening up to their doctors are happily surprised that the relationship is enhanced, not destroyed. It took years for Joan Hensel to tell her family doctor that she felt he didn’t take her seriously because she was a woman, and that she wanted his support for a fibromyalgia self-help program and other unconventional therapies she was trying.

To her surprise, her doctor was upset and concerned about her feelings. “He had no idea of the way he was coming across,” she says. Bringing her issues into the open has made a major improvement in their relationship. “I was afraid I’d have to find another physician,” she says. “I’m very happy with my family doctor, now that we’ve talked and come to a middle ground.”

And, just before press time, Laura Fiori, the woman we opened this story with, called to give a progress report. Since she was interviewed for this article, she had been thinking about leveling with her new rheumatologist. At her regular checkup, she told him all about what she’d been taking.

Her doctor’s response? “He seemed really, really open-minded,” she said, still sounding surprised. Unlike doctors in the past, he didn’t frown and he didn’t criticize.

“He said he had no problem with me taking supplements, but that he wanted to know what I was taking,” she said. “It was a really positive conversation.”

Judith Horstman, a contributing editor to Arthritis Today, writes regularly about alternative therapies. Her new book, The Arthritis Foundation’s Guide to Alternative Therapies, was published this fall.

SURVEY: ALTERNATIVE ATTITUDES

What Arthritis Doctors And Patients Really Think

About Our Surveys

Arthritis Today surveyed both doctors and patients about their use of and attitudes toward alternative therapies. We heard from 2,146 primary care physicians and rheumatologists who treat people with arthritis and related conditions. We also heard from 790 people with arthritis who are Arthritis Today readers and have volunteered to be part of our Reader Advisory Network.

Both studies were conducted in coordination with Leigh Callahan, PhD, associate director of the Thurston Arthritis Research Center at the University of North Carolina at Chapel Hill, and research associates Julie Keysor and Dawn Uhrick.

Who the Patients Are

Patients who responded to our survey are overwhelmingly female (91 percent), married (61 percent), and have some college education (50 percent). Their average age is 60, they are mostly white (92 percent), and the majority have at least one of three conditions: osteoarthritis (50 percent), rheumatoid arthritis (45 percent), and fibromyalgia (31 percent). Most (65 percent) have had symptoms for 12 or more years.

Who the Doctors Are

Doctors who responded to our survey are overwhelmingly male (74 percent), white (85 percent), and consider themselves “conventional” practitioners (82 percent). Some 67 percent are in primary care practices. Practice settings were divided among urban (44 percent), suburban (35 percent) and rural (21 percent). Their average age is 52, with an average of 24 years of practice among them.

What the Patients Said:

You Are Interested in Alternatives Because:

• You want help with pain relief.
• You want help with symptoms other than pain.
• You believe side effects would be fewer/milder.
• Nothing else has worked.
• The cost is less.
• You believe they may cure your disease.

Top 3 Reasons You Are Telling Your Doctor:

• You want your doctor to be fully informed about your health.
• You are concerned about interactions (mixing drug/herbal therapies).
• You prefer to have your doctor’s approval (but his disapproval won’t necessarily stop you).

Top 3 Reasons You Aren’t Telling Your Doctor:

• You believe he doesn’t know enough to advise you.
• You believe there’s no reason to tell.
• You are afraid he will not approve.

Just How Interested in Alternative Therapies Are You?

• 11% Not interested at all
• 51% Somewhat interested
• 10% I don't know
• 28 % Highly Interested

You Haven’t Turned Your Back on Conventional Medicine:

• 84% are seeing an a doctor specializing in arthritis.
• 89% are taking prescription drugs

Your Favorite Alternatives

• prayer 53%
• meditation 38%
• visualization 37%
• glucosamine 34%
• journal-keeping 32%
• massage therapy 27%
• chondroitin 26%
• chiropractic 25%
• magnets 19%
• metal jewelry 15%
• yoga, tai chi, qi gong 14%
• melatonin 11%

What the Doctors Said:

What Doctors Really Think

• 85% believe some therapies may be effective.
• 49% recommend some of them.
• 51% believe the trend toward alternative or integrative medicine is positive.
• 84% favor more funding for research on alternatives.

How Doctors Learn About Alternatives

• 62% read information when they come across it.
• 33% actively seek out opportunities to learn more.

What Doctors Do In the Exam Room

• 58% discuss alternatives if the patient brings it up first.
• 40% initiate discussions on alternatives.

What Doctors Fear

• 73% are concerned that patients will take or do these therapies in lieu of proven/conventional treatments.
• 52% are concerned that their patients aren’t telling them what therapies they’re taking/doing.
• 50% are concerned that alternative therapies will negatively interact with pharmaceutical drugs prescribed.
• 48% are concerned that therapies will harm patients’ health.

What Doctors Believe

• 15% believe herbal and other natural therapies are safer (fewer side effects) than pharmaceutical options.
• 38% believe these therapies are useful in that they give patients a valuable way to get involved in their own care.
• 20% believe alternative therapies are a waste of time and money.

Which Doctors Say What

• Rheumatologists consider themselves more knowledgeable about alternative therapies than primary care practitioners do.
• Primary care doctors have more favorable attitudes toward the effectiveness of these therapies than rheumatologists do.
• Primary care physicians are more likely than rheumatologists to bring up an alternative therapy with the intent of recommending it.
• Rural and suburban physicians are more likely than urban doctors to categorize alternative therapies as effective.

The Ways of Women

Female doctors are more likely than male doctors to believe alternative therapies are effective and to bring them up with patients to discuss and to make recommendations.

Top 10 Alternatives Doctors Recommend

• capsaicin 78%
• relaxation 76%
• biofeedback 68%
• meditation 59%
• journal writing 54%
• yoga 48%
• spirituality 47%
• tai chi 47%
• acupuncture 46%
• glucosamine sulfate 45%

Top 10 Alternatives Doctors Advise Against

• megadose vitamins 50%
• fasting 41%
• DMSO 36%
• DHEA 34%
• copper jewelry 25%
• bee venom 25%
• homeopathy 23%
• electro-pulsed magnets 22%
• static magnets 21%
• naturopathy 19%