Its mysterious power may be a clue to a new theory about brains and bodies.
by Atul Gawande
It was still shocking to M. how much a few wrong turns could change your life. She had graduated from Boston College with a degree in psychology, married at twenty-five, and had two children, a son and a daughter. She and her family settled in a town on Massachusetts’ southern shore. She worked for thirteen years in health care, becoming the director of a residence program for men who’d suffered severe head injuries. But she and her husband began fighting. There were betrayals. By the time she was thirty-two, her marriage had disintegrated. In the divorce, she lost possession of their home, and, amid her financial and psychological struggles, she saw that she was losing her children, too. Within a few years, she was drinking. She began dating someone, and they drank together. After a while, he brought some drugs home, and she tried them. The drugs got harder. Eventually, they were doing heroin, which turned out to be readily available from a street dealer a block away from her apartment.
One day, she went to see a doctor because she wasn’t feeling well, and learned that she had contracted H.I.V. from a contaminated needle. She had to leave her job. She lost visiting rights with her children. And she developed complications from the H.I.V., including shingles, which caused painful, blistering sores across her scalp and forehead. With treatment, though, her H.I.V. was brought under control. At thirty-six, she entered rehab, dropped the boyfriend, and kicked the drugs. She had two good, quiet years in which she began rebuilding her life. Then she got the itch.
It was right after a shingles episode. The blisters and the pain responded, as they usually did, to acyclovir, an antiviral medication. But this time the area of the scalp that was involved became numb, and the pain was replaced by a constant, relentless itch. She felt it mainly on the right side of her head. It crawled along her scalp, and no matter how much she scratched it would not go away. “I felt like my inner self, like my brain itself, was itching,” she says. And it took over her life just as she was starting to get it back.
Her internist didn’t know what to make of the problem. Itching is an extraordinarily common symptom. All kinds of dermatological conditions can cause it: allergic reactions, bacterial or fungal infections, skin cancer, psoriasis, dandruff, scabies, lice, poison ivy, sun damage, or just dry skin. Creams and makeup can cause itch, too. But M. used ordinary shampoo and soap, no creams. And when the doctor examined M.’s scalp she discovered nothing abnormal—no rash, no redness, no scaling, no thickening, no fungus, no parasites. All she saw was scratch marks.
The internist prescribed a medicated cream, but it didn’t help. The urge to scratch was unceasing and irresistible. “I would try to control it during the day, when I was aware of the itch, but it was really hard,” M. said. “At night, it was the worst. I guess I would scratch when I was asleep, because in the morning there would be blood on my pillowcase.” She began to lose her hair over the itchy area. She returned to her internist again and again. “I just kept haunting her and calling her,” M. said. But nothing the internist tried worked, and she began to suspect that the itch had nothing to do with M.’s skin.
Plenty of non-skin conditions can cause itching. Dr. Jeffrey Bernhard, a dermatologist with the University of Massachusetts Medical School, is among the few doctors to study itching systematically (he published the definitive textbook on the subject), and he told me of cases caused by hyperthyroidism, iron deficiency, liver disease, and cancers like Hodgkin’s lymphoma. Sometimes the syndrome is very specific. Persistent outer-arm itching that worsens in sunlight is known as brachioradial pruritus, and it’s caused by a crimped nerve in the neck. Aquagenic pruritus is recurrent, intense, diffuse itching upon getting out of a bath or shower, and although no one knows the mechanism, it’s a symptom of polycythemia vera, a rare condition in which the body produces too many red blood cells.
But M.’s itch was confined to the right side of her scalp. Her viral count showed that the H.I.V. was quiescent. Additional blood tests and X-rays were normal. So the internist concluded that M.’s problem was probably psychiatric. All sorts of psychiatric conditions can cause itching. Patients with psychosis can have cutaneous delusions—a belief that their skin is infested with, say, parasites, or crawling ants, or laced with tiny bits of fibreglass. Severe stress and other emotional experiences can also give rise to a physical symptom like itching—whether from the body’s release of endorphins (natural opioids, which, like morphine, can cause itching), increased skin temperature, nervous scratching, or increased sweating. In M.’s case, the internist suspected tricho-tillomania, an obsessive-compulsive disorder in which patients have an irresistible urge to pull out their hair.
M. was willing to consider such possibilities. Her life had been a mess, after all. But the antidepressant medications often prescribed for O.C.D. made no difference. And she didn’t actually feel a compulsion to pull out her hair. She simply felt itchy, on the area of her scalp that was left numb from the shingles. Although she could sometimes distract herself from it—by watching television or talking with a friend—the itch did not fluctuate with her mood or level of stress. The only thing that came close to offering relief was to scratch.
“Scratching is one of the sweetest gratifications of nature, and as ready at hand as any,” Montaigne wrote. “But repentance follows too annoyingly close at its heels.” For M., certainly, it did: the itching was so torturous, and the area so numb, that her scratching began to go through the skin. At a later office visit, her doctor found a silver-dollar-size patch of scalp where skin had been replaced by scab. M. tried bandaging her head, wearing caps to bed. But her fingernails would always find a way to her flesh, especially while she slept.
One morning, after she was awakened by her bedside alarm, she sat up and, she recalled, “this fluid came down my face, this greenish liquid.” She pressed a square of gauze to her head and went to see her doctor again. M. showed the doctor the fluid on the dressing. The doctor looked closely at the wound. She shined a light on it and in M.’s eyes. Then she walked out of the room and called an ambulance. Only in the Emergency Department at Massachusetts General Hospital, after the doctors started swarming, and one told her she needed surgery now, did M. learn what had happened. She had scratched through her skull during the night—and all the way into her brain.
Itching is a most peculiar and diabolical sensation. The definition offered by the German physician Samuel Hafenreffer in 1660 has yet to be improved upon: An unpleasant sensation that provokes the desire to scratch. Itch has been ranked, by scientific and artistic observers alike, among the most distressing physical sensations one can experience. In Dante’s Inferno, falsifiers were punished by “the burning rage / of fierce itching that nothing could relieve”:
The way their nails scraped down upon the
scabs
Was like a knife scraping off scales from
carp. . . .
“O you there tearing at your mail of
scabs
And even turning your fingers into
pincers,”
My guide began addressing one of them,
“Tell us are there Italians among the
souls
Down in this hole and I’ll pray that your
nails
Will last you in this task eternally.”
Though scratching can provide momentary relief, it often makes the itching worse. Dermatologists call this the itch-scratch cycle. Scientists believe that itch, and the accompanying scratch reflex, evolved in order to protect us from insects and clinging plant toxins—from such dangers as malaria, yellow fever, and dengue, transmitted by mosquitoes; from tularemia, river blindness, and sleeping sickness, transmitted by flies; from typhus-bearing lice, plague-bearing fleas, and poisonous spiders. The theory goes a long way toward explaining why itch is so exquisitely tuned. You can spend all day without noticing the feel of your shirt collar on your neck, and yet a single stray thread poking out, or a louse’s fine legs brushing by, can set you scratching furiously.
But how, exactly, itch works has been a puzzle. For most of medical history, scientists thought that itching was merely a weak form of pain. Then, in 1987, the German researcher H. O. Handwerker and his colleagues used mild electric pulses to drive histamine, an itch-producing substance that the body releases during allergic reactions, into the skin of volunteers. As the researchers increased the dose of histamine, they found that they were able to increase the intensity of itch the volunteers reported, from the barely appreciable to the “maximum imaginable.” Yet the volunteers never felt an increase in pain. The scientists concluded that itch and pain are entirely separate sensations, transmitted along different pathways.
Despite centuries spent mapping the body’s nervous circuitry, scientists had never noticed a nerve specific for itch. But now the hunt was on, and a group of Swedish and German researchers embarked upon a series of tricky experiments. They inserted ultra-thin metal electrodes into the skin of paid volunteers, and wiggled them around until they picked up electrical signals from a single nerve fibre. Computers subtracted the noise from other nerve fibres crossing through the region. The researchers would then spend hours—as long as the volunteer could tolerate it—testing different stimuli on the skin in the area (a heated probe, for example, or a fine paintbrush) to see what would get the nerve to fire, and what the person experienced when it did.
They worked their way through fifty-three volunteers. Mostly, they encountered well-known types of nerve fibres that respond to temperature or light touch or mechanical pressure. “That feels warm,” a volunteer might say, or “That feels soft,” or “Ouch! Hey!” Several times, the scientists came across a nerve fibre that didn’t respond to any of these stimuli. When they introduced a tiny dose of histamine into the skin, however, they observed a sharp electrical response in some of these nerve fibres, and the volunteer would experience an itch. They announced their discovery in a 1997 paper: they’d found a type of nerve that was specific for itch.
Unlike, say, the nerve fibres for pain, each of which covers a millimetre-size territory, a single itch fibre can pick up an itchy sensation more than three inches away. The fibres also turned out to have extraordinarily low conduction speeds, which explained why itchiness is so slow to build and so slow to subside.
Other researchers traced these fibres to the spinal cord and all the way to the brain. Examining functional PET-scan studies in healthy human subjects who had been given mosquito-bite-like histamine injections, they found a distinct signature of itch activity. Several specific areas of the brain light up: the part of the cortex that tells you where on your body the sensation occurs; the region that governs your emotional responses, reflecting the disagreeable nature of itch; and the limbic and motor areas that process irresistible urges (such as the urge to use drugs, among the addicted, or to overeat, among the obese), reflecting the ferocious impulse to scratch.
Now various phenomena became clear. Itch, it turns out, is indeed inseparable from the desire to scratch. It can be triggered chemically (by the saliva injected when a mosquito bites, say) or mechanically (from the mosquito’s legs, even before it bites). The itch-scratch reflex activates higher levels of your brain than the spinal-cord-level reflex that makes you pull your hand away from a flame. Brain scans also show that scratching diminishes activity in brain areas associated with unpleasant sensations.
But some basic features of itch remained unexplained—features that make itch a uniquely revealing case study. On the one hand, our bodies are studded with receptors for itch, as they are with receptors for touch, pain, and other sensations; this provides an alarm system for harm and allows us to safely navigate the world. But why does a feather brushed across the skin sometimes itch and at other times tickle? (Tickling has a social component: you can make yourself itch, but only another person can tickle you.) And, even more puzzling, how is it that you can make yourself itchy just by thinking about it?
Contemplating what it’s like to hold your finger in a flame won’t make your finger hurt. But simply writing about a tick crawling up the nape of one’s neck is enough to start my neck itching. Then my scalp. And then this one little spot along my flank where I’m beginning to wonder whether I should check to see if there might be something there. In one study, a German professor of psychosomatics gave a lecture that included, in the first half, a series of what might be called itchy slides, showing fleas, lice, people scratching, and the like, and, in the second half, more benign slides, with pictures of soft down, baby skin, bathers. Video cameras recorded the audience. Sure enough, the frequency of scratching among people in the audience increased markedly during the first half and decreased during the second. Thoughts made them itch.
We now have the nerve map for itching, as we do for other sensations. But a deeper puzzle remains: how much of our sensations and experiences do nerves really explain?
In the operating room, a neurosurgeon washed out and debrided M.’s wound, which had become infected. Later, a plastic surgeon covered it with a graft of skin from her thigh. Though her head was wrapped in layers of gauze and she did all she could to resist the still furious itchiness, she awoke one morning to find that she had rubbed the graft away. The doctors returned her to the operating room for a second skin graft, and this time they wrapped her hands as well. She rubbed it away again anyway.
“They kept telling me I had O.C.D.,” M. said. A psychiatric team was sent in to see her each day, and the resident would ask her, “As a child, when you walked down the street did you count the lines? Did you do anything repetitive? Did you have to count everything you saw?” She kept telling him no, but he seemed skeptical. He tracked down her family and asked them, but they said no, too. Psychology tests likewise ruled out obsessive-compulsive disorder. They showed depression, though, and, of course, there was the history of addiction. So the doctors still thought her scratching was from a psychiatric disorder. They gave her drugs that made her feel logy and sleep a lot. But the itching was as bad as ever, and she still woke up scratching at that terrible wound.
One morning, she found, as she put it, “this very bright and happy-looking woman standing by my bed. She said, ‘I’m Dr. Oaklander,’ ” M. recalled. “I thought, Oh great. Here we go again. But she explained that she was a neurologist, and she said, ‘The first thing I want to say to you is that I don’t think you’re crazy. I don’t think you have O.C.D.’ At that moment, I really saw her grow wings and a halo,” M. told me. “I said, ‘Are you sure?’ And she said, ‘Yes. I have heard of this before.’ ”
Anne Louise Oaklander was about the same age as M. Her mother is a prominent neurologist at Albert Einstein College of Medicine, in New York, and she’d followed her into the field. Oaklander had specialized in disorders of peripheral nerve sensation—disorders like shingles. Although pain is the most common symptom of shingles, Oaklander had noticed during her training that some patients also had itching, occasionally severe, and seeing M. reminded her of one of her shingles patients. “I remember standing in a hallway talking to her, and what she complained about—her major concern—was that she was tormented by this terrible itch over the eye where she had had shingles,” she told me. When Oaklander looked at her, she thought that something wasn’t right. It took a moment to realize why. “The itch was so severe, she had scratched off her eyebrow.”
Oaklander tested the skin near M.’s wound. It was numb to temperature, touch, and pinprick. Nonetheless, it was itchy, and when it was scratched or rubbed M. felt the itchiness temporarily subside. Oaklander injected a few drops of local anesthetic into the skin. To M.’s surprise, the itching stopped—instantly and almost entirely. This was the first real relief she’d had in more than a year.
It was an imperfect treatment, though. The itch came back when the anesthetic wore off, and, although Oaklander tried having M. wear an anesthetic patch over the wound, the effect diminished over time. Oaklander did not have an explanation for any of this. When she took a biopsy of the itchy skin, it showed that ninety-six per cent of the nerve fibres were gone. So why was the itch so intense?
Oaklander came up with two theories. The first was that those few remaining nerve fibres were itch fibres and, with no other fibres around to offer competing signals, they had become constantly active. The second theory was the opposite. The nerves were dead, but perhaps the itch system in M.’s brain had gone haywire, running on a loop all its own.
The second theory seemed less likely. If the nerves to her scalp were dead, how would you explain the relief she got from scratching, or from the local anesthetic? Indeed, how could you explain the itch in the first place? An itch without nerve endings didn’t make sense. The neurosurgeons stuck with the first theory; they offered to cut the main sensory nerve to the front of M.’s scalp and abolish the itching permanently. Oaklander, however, thought that the second theory was the right one—that this was a brain problem, not a nerve problem—and that cutting the nerve would do more harm than good. She argued with the neurosurgeons, and she advised M. not to let them do any cutting.
“But I was desperate,” M. told me. She let them operate on her, slicing the supraorbital nerve above the right eye. When she woke up, a whole section of her forehead was numb—and the itching was gone. A few weeks later, however, it came back, in an even wider expanse than before. The doctors tried pain medications, more psychiatric medications, more local anesthetic. But the only thing that kept M. from tearing her skin and skull open again, the doctors found, was to put a foam football helmet on her head and bind her wrists to the bedrails at night.
She spent the next two years committed to a locked medical ward in a rehabilitation hospital—because, although she was not mentally ill, she was considered a danger to herself. Eventually, the staff worked out a solution that did not require binding her to the bedrails. Along with the football helmet, she had to wear white mitts that were secured around her wrists by surgical tape. “Every bedtime, it looked like they were dressing me up for Halloween—me and the guy next to me,” she told me.
“The guy next to you?” I asked. He had had shingles on his neck, she explained, and also developed a persistent itch. “Every night, they would wrap up his hands and wrap up mine.” She spoke more softly now. “But I heard he ended up dying from it, because he scratched into his carotid artery.”
I met M. seven years after she’d been discharged from the rehabilitation hospital. She is forty-eight now. She lives in a three-room apartment, with a crucifix and a bust of Jesus on the wall and the low yellow light of table lamps strung with beads over their shades. Stacked in a wicker basket next to her coffee table were Rick Warren’s “The Purpose Driven Life,” People, and the latest issue of Neurology Now, a magazine for patients. Together, they summed up her struggles, for she is still fighting the meaninglessness, the isolation, and the physiology of her predicament.
She met me at the door in a wheelchair; the injury to her brain had left her partially paralyzed on the left side of her body. She remains estranged from her children. She has not, however, relapsed into drinking or drugs. Her H.I.V. remains under control. Although the itch on her scalp and forehead persists, she has gradually learned to protect herself. She trims her nails short. She finds ways to distract herself. If she must scratch, she tries to rub gently instead. And, if that isn’t enough, she uses a soft toothbrush or a rolled-up terry cloth. “I don’t use anything sharp,” she said. The two years that she spent bound up in the hospital seemed to have broken the nighttime scratching. At home, she found that she didn’t need to wear the helmet and gloves anymore.
Still, the itching remains a daily torment. “I don’t normally tell people this,” she said, “but I have a fantasy of shaving off my eyebrow and taking a metal-wire grill brush and scratching away.”
Some of her doctors have not been willing to let go of the idea that this has been a nerve problem all along. A local neurosurgeon told her that the original operation to cut the sensory nerve to her scalp must not have gone deep enough. “He wants to go in again,” she told me.
A new scientific understanding of perception has emerged in the past few decades, and it has overturned classical, centuries-long beliefs about how our brains work—though it has apparently not penetrated the medical world yet. The old understanding of perception is what neuroscientists call “the naïve view,” and it is the view that most people, in or out of medicine, still have. We’re inclined to think that people normally perceive things in the world directly. We believe that the hardness of a rock, the coldness of an ice cube, the itchiness of a sweater are picked up by our nerve endings, transmitted through the spinal cord like a message through a wire, and decoded by the brain.
In a 1710 “Treatise Concerning the Principles of Human Knowledge,” the Irish philosopher George Berkeley objected to this view. We do not know the world of objects, he argued; we know only our mental ideas of objects. “Light and colours, heat and cold, extension and figures—in a word, the things we see and feel—what are they but so many sensations, notions, ideas?” Indeed, he concluded, the objects of the world are likely just inventions of the mind, put in there by God. To which Samuel Johnson famously responded by kicking a large stone and declaring, “I refute it thus!”
Still, Berkeley had recognized some serious flaws in the direct-perception theory—in the notion that when we see, hear, or feel we are just taking in the sights, sounds, and textures of the world. For one thing, it cannot explain how we experience things that seem physically real but aren’t: sensations of itching that arise from nothing more than itchy thoughts; dreams that can seem indistinguishable from reality; phantom sensations that amputees have in their missing limbs. And, the more we examine the actual nerve transmissions we receive from the world outside, the more inadequate they seem.
Our assumption had been that the sensory data we receive from our eyes, ears, nose, fingers, and so on contain all the information that we need for perception, and that perception must work something like a radio. It’s hard to conceive that a Boston Symphony Orchestra concert is in a radio wave. But it is. So you might think that it’s the same with the signals we receive—that if you hooked up someone’s nerves to a monitor you could watch what the person is experiencing as if it were a television show.
Yet, as scientists set about analyzing the signals, they found them to be radically impoverished. Suppose someone is viewing a tree in a clearing. Given simply the transmissions along the optic nerve from the light entering the eye, one would not be able to reconstruct the three-dimensionality, or the distance, or the detail of the bark—attributes that we perceive instantly.
Or consider what neuroscientists call “the binding problem.” Tracking a dog as it runs behind a picket fence, all that your eyes receive is separated vertical images of the dog, with large slices missing. Yet somehow you perceive the mutt to be whole, an intact entity travelling through space. Put two dogs together behind the fence and you don’t think they’ve morphed into one. Your mind now configures the slices as two independent creatures.
The images in our mind are extraordinarily rich. We can tell if something is liquid or solid, heavy or light, dead or alive. But the information we work from is poor—a distorted, two-dimensional transmission with entire spots missing. So the mind fills in most of the picture. You can get a sense of this from brain-anatomy studies. If visual sensations were primarily received rather than constructed by the brain, you’d expect that most of the fibres going to the brain’s primary visual cortex would come from the retina. Instead, scientists have found that only twenty per cent do; eighty per cent come downward from regions of the brain governing functions like memory. Richard Gregory, a prominent British neuropsychologist, estimates that visual perception is more than ninety per cent memory and less than ten per cent sensory nerve signals. When Oaklander theorized that M.’s itch was endogenous, rather than generated by peripheral nerve signals, she was onto something important.
The fallacy of reducing perception to reception is especially clear when it comes to phantom limbs. Doctors have often explained such sensations as a matter of inflamed or frayed nerve endings in the stump sending aberrant signals to the brain. But this explanation should long ago have been suspect. Efforts by surgeons to cut back on the nerve typically produce the same results that M. had when they cut the sensory nerve to her forehead: a brief period of relief followed by a return of the sensation.
Moreover, the feelings people experience in their phantom limbs are far too varied and rich to be explained by the random firings of a bruised nerve. People report not just pain but also sensations of sweatiness, heat, texture, and movement in a missing limb. There is no experience people have with real limbs that they do not experience with phantom limbs. They feel their phantom leg swinging, water trickling down a phantom arm, a phantom ring becoming too tight for a phantom digit. Children have used phantom fingers to count and solve arithmetic problems. V. S. Ramachandran, an eminent neuroscientist at the University of California, San Diego, has written up the case of a woman who was born with only stumps at her shoulders, and yet, as far back as she could remember, felt herself to have arms and hands; she even feels herself gesticulating when she speaks. And phantoms do not occur just in limbs. Around half of women who have undergone a mastectomy experience a phantom breast, with the nipple being the most vivid part. You’ve likely had an experience of phantom sensation yourself. When the dentist gives you a local anesthetic, and your lip goes numb, the nerves go dead. Yet you don’t feel your lip disappear. Quite the opposite: it feels larger and plumper than normal, even though you can see in a mirror that the size hasn’t changed.
The account of perception that’s starting to emerge is what we might call the “brain’s best guess” theory of perception: perception is the brain’s best guess about what is happening in the outside world. The mind integrates scattered, weak, rudimentary signals from a variety of sensory channels, information from past experiences, and hard-wired processes, and produces a sensory experience full of brain-provided color, sound, texture, and meaning. We see a friendly yellow Labrador bounding behind a picket fence not because that is the transmission we receive but because this is the perception our weaver-brain assembles as its best hypothesis of what is out there from the slivers of information we get. Perception is inference.
The theory—and a theory is all it is right now—has begun to make sense of some bewildering phenomena. Among them is an experiment that Ramachandran performed with volunteers who had phantom pain in an amputated arm. They put their surviving arm through a hole in the side of a box with a mirror inside, so that, peering through the open top, they would see their arm and its mirror image, as if they had two arms. Ramachandran then asked them to move both their intact arm and, in their mind, their phantom arm—to pretend that they were conducting an orchestra, say. The patients had the sense that they had two arms again. Even though they knew it was an illusion, it provided immediate relief. People who for years had been unable to unclench their phantom fist suddenly felt their hand open; phantom arms in painfully contorted positions could relax. With daily use of the mirror box over weeks, patients sensed their phantom limbs actually shrink into their stumps and, in several instances, completely vanish. Researchers at Walter Reed Army Medical Center recently published the results of a randomized trial of mirror therapy for soldiers with phantom-limb pain, showing dramatic success.
A lot about this phenomenon remains murky, but here’s what the new theory suggests is going on: when your arm is amputated, nerve transmissions are shut off, and the brain’s best guess often seems to be that the arm is still there, but paralyzed, or clenched, or beginning to cramp up. Things can stay like this for years. The mirror box, however, provides the brain with new visual input—however illusory—suggesting motion in the absent arm. The brain has to incorporate the new information into its sensory map of what’s happening. Therefore, it guesses again, and the pain goes away.
The new theory may also explain what was going on with M.’s itch. The shingles destroyed most of the nerves in her scalp. And, for whatever reason, her brain surmised from what little input it had that something horribly itchy was going on—that perhaps a whole army of ants were crawling back and forth over just that patch of skin. There wasn’t any such thing, of course. But M.’s brain has received no contrary signals that would shift its assumptions. So she itches.
Not long ago, I met a man who made me wonder whether such phantom sensations are more common than we realize. H. was forty-eight, in good health, an officer at a Boston financial-services company living with his wife in a western suburb, when he made passing mention of an odd pain to his internist. For at least twenty years, he said, he’d had a mild tingling running along his left arm and down the left side of his body, and, if he tilted his neck forward at a particular angle, it became a pronounced, electrical jolt. The internist recognized this as Lhermitte’s sign, a classic symptom that can indicate multiple sclerosis, Vitamin B12 deficiency, or spinal-cord compression from a tumor or a herniated disk. An MRI revealed a cavernous hemangioma, a pea-size mass of dilated blood vessels, pressing into the spinal cord in his neck. A week later, while the doctors were still contemplating what to do, it ruptured.
“I was raking leaves out in the yard and, all of a sudden, there was an explosion of pain and my left arm wasn’t responding to my brain,” H. said when I visited him at home. Once the swelling subsided, a neurosurgeon performed a tricky operation to remove the tumor from the spinal cord. The operation was successful, but afterward H. began experiencing a constellation of strange sensations. His left hand felt cartoonishly large—at least twice its actual size. He developed a constant burning pain along an inch-wide ribbon extending from the left side of his neck all the way down his arm. And an itch crept up and down along the same band, which no amount of scratching would relieve.
H. has not accepted that these sensations are here to stay—the prospect is too depressing—but they’ve persisted for eleven years now. Although the burning is often tolerable during the day, the slightest thing can trigger an excruciating flareup—a cool breeze across the skin, the brush of a shirtsleeve or a bedsheet. “Sometimes I feel that my skin has been flayed and my flesh is exposed, and any touch is just very painful,” he told me. “Sometimes I feel that there’s an ice pick or a wasp sting. Sometimes I feel that I’ve been splattered with hot cooking oil.”
For all that, the itch has been harder to endure. H. has developed calluses from the incessant scratching. “I find I am choosing itch relief over the pain that I am provoking by satisfying the itch,” he said.
He has tried all sorts of treatments—medications, acupuncture, herbal remedies, lidocaine injections, electrical-stimulation therapy. But nothing really worked, and the condition forced him to retire in 2001. He now avoids leaving the house. He gives himself projects. Last year, he built a three-foot stone wall around his yard, slowly placing the stones by hand. But he spends much of his day, after his wife has left for work, alone in the house with their three cats, his shirt off and the heat turned up, trying to prevent a flareup.
His neurologist introduced him to me, with his permission, as an example of someone with severe itching from a central rather than a peripheral cause. So one morning we sat in his living room trying to puzzle out what was going on. The sun streamed in through a big bay window. One of his cats, a scraggly brown tabby, curled up beside me on the couch. H. sat in an armchair in a baggy purple T-shirt he’d put on for my visit. He told me that he thought his problem was basically a “bad switch” in his neck where the tumor had been, a kind of loose wire sending false signals to his brain. But I told him about the increasing evidence that our sensory experiences are not sent to the brain but originate in it. When I got to the example of phantom-limb sensations, he perked up. The experiences of phantom-limb patients sounded familiar to him. When I mentioned that he might want to try the mirror-box treatment, he agreed. “I have a mirror upstairs,” he said.
He brought a cheval glass down to the living room, and I had him stand with his chest against the side of it, so that his troublesome left arm was behind it and his normal right arm was in front. He tipped his head so that when he looked into the mirror the image of his right arm seemed to occupy the same position as his left arm. Then I had him wave his arms, his actual arms, as if he were conducting an orchestra.
The first thing he expressed was disappointment. “It isn’t quite like looking at my left hand,” he said. But then suddenly it was.
“Wow!” he said. “Now, this is odd.”
After a moment or two, I noticed that he had stopped moving his left arm. Yet he reported that he still felt as if it were moving. What’s more, the sensations in it had changed dramatically. For the first time in eleven years, he felt his left hand “snap” back to normal size. He felt the burning pain in his arm diminish. And the itch, too, was dulled.
“This is positively bizarre,” he said.
He still felt the pain and the itch in his neck and shoulder, where the image in the mirror cut off. And, when he came away from the mirror, the aberrant sensations in his left arm returned. He began using the mirror a few times a day, for fifteen minutes or so at a stretch, and I checked in with him periodically.
“What’s most dramatic is the change in the size of my hand,” he says. After a couple of weeks, his hand returned to feeling normal in size all day long.
The mirror also provided the first effective treatment he has had for the flares of itch and pain that sporadically seize him. Where once he could do nothing but sit and wait for the torment to subside—it sometimes took an hour or more—he now just pulls out the mirror. “I’ve never had anything like this before,” he said. “It’s my magic mirror.”
There have been other, isolated successes with mirror treatment. In Bath, England, several patients suffering from what is called complex regional pain syndrome—severe, disabling limb sensations of unknown cause—were reported to have experienced complete resolution after six weeks of mirror therapy. In California, mirror therapy helped stroke patients recover from a condition known as hemineglect, which produces something like the opposite of a phantom limb—these patients have a part of the body they no longer realize is theirs.
Such findings open up a fascinating prospect: perhaps many patients whom doctors treat as having a nerve injury or a disease have, instead, what might be called sensor syndromes. When your car’s dashboard warning light keeps telling you that there is an engine failure, but the mechanics can’t find anything wrong, the sensor itself may be the problem. This is no less true for human beings. Our sensations of pain, itch, nausea, and fatigue are normally protective. Unmoored from physical reality, however, they can become a nightmare: M., with her intractable itching, and H., with his constellation of strange symptoms—but perhaps also the hundreds of thousands of people in the United States alone who suffer from conditions like chronic back pain, fibromyalgia, chronic pelvic pain, tinnitus, temporomandibular joint disorder, or repetitive strain injury, where, typically, no amount of imaging, nerve testing, or surgery manages to uncover an anatomical explanation. Doctors have persisted in treating these conditions as nerve or tissue problems—engine failures, as it were. We get under the hood and remove this, replace that, snip some wires. Yet still the sensor keeps going off.
So we get frustrated. “There’s nothing wrong,” we’ll insist. And, the next thing you know, we’re treating the driver instead of the problem. We prescribe tranquillizers, antidepressants, escalating doses of narcotics. And the drugs often do make it easier for people to ignore the sensors, even if they are wired right into the brain. The mirror treatment, by contrast, targets the deranged sensor system itself. It essentially takes a misfiring sensor—a warning system functioning under an illusion that something is terribly wrong out in the world it monitors—and feeds it an alternate set of signals that calm it down. The new signals may even reset the sensor.
This may help explain, for example, the success of the advice that back specialists now commonly give. Work through the pain, they tell many of their patients, and, surprisingly often, the pain goes away. It had been a mystifying phenomenon. But the picture now seems clearer. Most chronic back pain starts as an acute back pain—say, after a fall. Usually, the pain subsides as the injury heals. But in some cases the pain sensors continue to light up long after the tissue damage is gone. In such instances, working through the pain may offer the brain contradictory feedback—a signal that ordinary activity does not, in fact, cause physical harm. And so the sensor resets.
This understanding of sensation points to an entire new array of potential treatments—based not on drugs or surgery but, instead, on the careful manipulation of our perceptions. Researchers at the University of Manchester, in England, have gone a step beyond mirrors and fashioned an immersive virtual-reality system for treating patients with phantom-limb pain. Detectors transpose movement of real limbs into a virtual world where patients feel they are actually moving, stretching, even playing a ballgame. So far, five patients have tried the system, and they have all experienced a reduction in pain. Whether those results will last has yet to be established. But the approach raises the possibility of designing similar systems to help patients with other sensor syndromes. How, one wonders, would someone with chronic back pain fare in a virtual world? The Manchester study suggests that there may be many ways to fight our phantoms.
I called Ramachandran to ask him about M.’s terrible itch. The sensation may be a phantom, but it’s on her scalp, not in a limb, so it seemed unlikely that his mirror approach could do anything for her. He told me about an experiment in which he put ice-cold water in people’s ears. This confuses the brain’s position sensors, tricking subjects into thinking that their heads are moving, and in certain phantom-limb and stroke patients the illusion corrected their misperceptions, at least temporarily. Maybe this would help M., he said. He had another idea. If you take two mirrors and put them at right angles to each other, you will get a non-reversed mirror image. Looking in, the right half of your face appears on the left and the left half appears on the right. But unless you move, he said, your brain may not realize that the image is flipped.
“Now, suppose she looks in this mirror and scratches the left side of her head. No, wait—I’m thinking out loud here—suppose she looks and you have someone else touch the left side of her head. It’ll look—maybe it’ll feel—like you’re touching the right side of her head.” He let out an impish giggle. “Maybe this would make her itchy right scalp feel more normal.” Maybe it would encourage her brain to make a different perceptual inference; maybe it would press reset. “Who knows?” he said.
It seemed worth a try. ♦
Saturday, June 28, 2008
Friday, June 27, 2008
Why do some athletes die suddenly?
By Stu Durando
The disease that became the focus of Dr. Keith Mankowitz's cardiology practice was a medical enigma 11 years ago when he opened a center dedicated to its research and treatment.
The condition known as hypertrophic cardiomyopathy has been so misunderstood that it has gone by 75 names and been misdiagnosed in a multitude of ways.
It makes sporadic headlines only when seemingly healthy athletes such as Hank Gathers, Thomas Herrion and Jason Collier die unexpectedly from its effects. Yet the true impact comes more routinely."It's becoming more and more recognized that this is a significant condition," Mankowitz said. "It's much more common than we thought it was."
Mankowitz, a native of Johannesburg, South Africa, started the Washington University Hypertrophic Cardiomyopathy Center in 1997. With the aid of a grant, he is increasing exposure for the center at a time when research shows sudden deaths among athletes are five to 10 times more prevalent than previously thought.
Additionally, Mankowitz is working with Biomedical Systems, based in Maryland Heights, to start a pilot screening program this fall for high school athletes with the goal of taking the program statewide.
Last year, Adam Litteken, 16, a student at Francis Howell Central High School, died while playing hockey. It was determined that he suffered from undetected HCM.
At least three other school-aged kids in the St. Louis area have died without warning in the past two years. Damien Nash, who grew up in St. Louis and played for the Denver Broncos, died last year after playing in a charity basketball game.
A 25-year study by the Minneapolis Heart Institute Foundation showed that a young athlete dies unexpectedly every three days in the United States.
"It's only in the last few years that people realize it's really specialized, and you need people very familiar with the condition to take care of HCM," Mankowitz said. "Most cardiologists don't have enough training. Plus, it's an evolving field where there are advances all the time."
Sudden death among athletes, most frequently basketball and football players, has focused attention on HCM. But anyone can be susceptible.
HCM is a genetic disease that causes the heart to thicken abnormally and is estimated to occur in one in 500 people. Diagnosis can be difficult; patients often are told they suffer from other disorders.
Yet clinics like the one run by Mankowitz are uncommon. His is one of 11 in the United States and 14 worldwide that are recognized by the Hypertrophic Cardiomyopathy Association as centers of excellence in treating the condition.
He focuses on patients 16 and older, but children can be tested and diagnosed at younger ages, especially if a family member dies from HCM or is known to have the disease. The best test is an echocardiogram, which is an ultrasound of the heart. It can cost around $1,000.
The cause of Nash's death was not determined, as several other underlying heart conditions can cause sudden death. But HCM is the culprit in 36 percent of sudden deaths among athletes 35 and younger. A standard physical usually is not enough to uncover the condition.
Litteken's mother, Ellen, has known for years that she is living with a heart condition known as mitral valve prolapse, which does not impact her daily life. But it gave the family pediatrician reason to take a harder look at Litteken's two children. Still, no hints of HCM were found before Adam's death.
The rest of the Litteken family has since been tested for HCM, with all results coming back negative.
"We had echocardiograms done, and it's something in hindsight I would have liked for Adam to have done," Ellen Litteken said. "We would have found it. He had no symptoms whatsoever."
Symptoms that might hint at HCM include shortness of breath, lightheadedness, fainting, chest pain, palpitations and fatigue. But sometimes symptoms are not evident.
Dr. Joel Hardin, who lived in St. Louis for 30 years, has been involved in a program in New Jersey that provides free screenings, similar to the program Mankowitz hopes to begin. Lisa Salberg, founder of the HCM Association, said those screenings can be misleading because they are usually too limited to detect HCM. They generally involve an electrocardiogram, not the more revealing echocardiogram.
Hardin countered that any chance to find the disease is worthwhile.
"You start with the realization you're just scratching the surface," he said. "It gives you a clue. When an EKG is abnormal, there's an obligation to explain why it's abnormal."
Mankowitz hopes to start screenings at two high schools in the fall. Pat Barrett of Biomedical Systems said he is prepared to provide electrocardiogram machines to every high school in Missouri next year if school districts approve.
They won't diagnose the disease but can help reveal a potential problem.
Over the years, misdiagnosis of HCM has been common, Salberg said. Her organization surveyed more than 1,100 HCM sufferers and found a host of misleading diagnoses.
People were told they had asthma (19 percent), anxiety attacks (17.3 percent), depression (17.4 percent) and innocent heart murmurs (50.4 percent) along with other ailments, including acid reflux.
"What spurred my interest was parents who had lost children," said Salberg, who was diagnosed with HCM after her sister died of the disease. "I started noticing trends. I'd say, 'Did your child have any diagnosis?' They would say, 'Just a little asthma.' If I heard it once, I heard it 10 times. Some people were diagnosed with more than one thing."
Mankowitz hopes to educate more physicians so the condition can be detected before it's too late.
He led a conference in St. Louis in April with speakers from Washington and New Jersey. More recently he spoke at a conference with an audience of pediatricians. He makes himself available for speaking engagements without charging and has distributed literature to doctors.
"We try to make other physicians in the Midwest more aware and direct them to send us patients," he said. "Reading an echocardiogram is not straightforward and the diagnosis isn't. You have to put a puzzle together and know how to recognize some features. It really is an art."
People who are found to have HCM are told not to take part in many sports because burst exertion can trigger sudden death. Undetected or misdiagnosed, the first sign of a problem can be death.
Shelley Rosenmiller of St. Charles was diagnosed with HCM and had a surgical procedure in November. She realizes she may have been fortunate.
"I tried to do my aerobics and all of that, and I shudder to think that I could have pushed myself too far," she said. "One thing I could never do was distance run. I would get winded. I've often wondered if it could have been that I had this existing condition."
Meanwhile, Ellen Litteken said her family plans to set up a foundation in Adam's name. She is unsure where the money would be donated but is interested in talking to Mankowitz about increasing awareness.
She said, "If we can help one other kid that would be awesome."
The disease that became the focus of Dr. Keith Mankowitz's cardiology practice was a medical enigma 11 years ago when he opened a center dedicated to its research and treatment.
The condition known as hypertrophic cardiomyopathy has been so misunderstood that it has gone by 75 names and been misdiagnosed in a multitude of ways.
It makes sporadic headlines only when seemingly healthy athletes such as Hank Gathers, Thomas Herrion and Jason Collier die unexpectedly from its effects. Yet the true impact comes more routinely."It's becoming more and more recognized that this is a significant condition," Mankowitz said. "It's much more common than we thought it was."
Mankowitz, a native of Johannesburg, South Africa, started the Washington University Hypertrophic Cardiomyopathy Center in 1997. With the aid of a grant, he is increasing exposure for the center at a time when research shows sudden deaths among athletes are five to 10 times more prevalent than previously thought.
Additionally, Mankowitz is working with Biomedical Systems, based in Maryland Heights, to start a pilot screening program this fall for high school athletes with the goal of taking the program statewide.
Last year, Adam Litteken, 16, a student at Francis Howell Central High School, died while playing hockey. It was determined that he suffered from undetected HCM.
At least three other school-aged kids in the St. Louis area have died without warning in the past two years. Damien Nash, who grew up in St. Louis and played for the Denver Broncos, died last year after playing in a charity basketball game.
A 25-year study by the Minneapolis Heart Institute Foundation showed that a young athlete dies unexpectedly every three days in the United States.
"It's only in the last few years that people realize it's really specialized, and you need people very familiar with the condition to take care of HCM," Mankowitz said. "Most cardiologists don't have enough training. Plus, it's an evolving field where there are advances all the time."
Sudden death among athletes, most frequently basketball and football players, has focused attention on HCM. But anyone can be susceptible.
HCM is a genetic disease that causes the heart to thicken abnormally and is estimated to occur in one in 500 people. Diagnosis can be difficult; patients often are told they suffer from other disorders.
Yet clinics like the one run by Mankowitz are uncommon. His is one of 11 in the United States and 14 worldwide that are recognized by the Hypertrophic Cardiomyopathy Association as centers of excellence in treating the condition.
He focuses on patients 16 and older, but children can be tested and diagnosed at younger ages, especially if a family member dies from HCM or is known to have the disease. The best test is an echocardiogram, which is an ultrasound of the heart. It can cost around $1,000.
The cause of Nash's death was not determined, as several other underlying heart conditions can cause sudden death. But HCM is the culprit in 36 percent of sudden deaths among athletes 35 and younger. A standard physical usually is not enough to uncover the condition.
Litteken's mother, Ellen, has known for years that she is living with a heart condition known as mitral valve prolapse, which does not impact her daily life. But it gave the family pediatrician reason to take a harder look at Litteken's two children. Still, no hints of HCM were found before Adam's death.
The rest of the Litteken family has since been tested for HCM, with all results coming back negative.
"We had echocardiograms done, and it's something in hindsight I would have liked for Adam to have done," Ellen Litteken said. "We would have found it. He had no symptoms whatsoever."
Symptoms that might hint at HCM include shortness of breath, lightheadedness, fainting, chest pain, palpitations and fatigue. But sometimes symptoms are not evident.
Dr. Joel Hardin, who lived in St. Louis for 30 years, has been involved in a program in New Jersey that provides free screenings, similar to the program Mankowitz hopes to begin. Lisa Salberg, founder of the HCM Association, said those screenings can be misleading because they are usually too limited to detect HCM. They generally involve an electrocardiogram, not the more revealing echocardiogram.
Hardin countered that any chance to find the disease is worthwhile.
"You start with the realization you're just scratching the surface," he said. "It gives you a clue. When an EKG is abnormal, there's an obligation to explain why it's abnormal."
Mankowitz hopes to start screenings at two high schools in the fall. Pat Barrett of Biomedical Systems said he is prepared to provide electrocardiogram machines to every high school in Missouri next year if school districts approve.
They won't diagnose the disease but can help reveal a potential problem.
Over the years, misdiagnosis of HCM has been common, Salberg said. Her organization surveyed more than 1,100 HCM sufferers and found a host of misleading diagnoses.
People were told they had asthma (19 percent), anxiety attacks (17.3 percent), depression (17.4 percent) and innocent heart murmurs (50.4 percent) along with other ailments, including acid reflux.
"What spurred my interest was parents who had lost children," said Salberg, who was diagnosed with HCM after her sister died of the disease. "I started noticing trends. I'd say, 'Did your child have any diagnosis?' They would say, 'Just a little asthma.' If I heard it once, I heard it 10 times. Some people were diagnosed with more than one thing."
Mankowitz hopes to educate more physicians so the condition can be detected before it's too late.
He led a conference in St. Louis in April with speakers from Washington and New Jersey. More recently he spoke at a conference with an audience of pediatricians. He makes himself available for speaking engagements without charging and has distributed literature to doctors.
"We try to make other physicians in the Midwest more aware and direct them to send us patients," he said. "Reading an echocardiogram is not straightforward and the diagnosis isn't. You have to put a puzzle together and know how to recognize some features. It really is an art."
People who are found to have HCM are told not to take part in many sports because burst exertion can trigger sudden death. Undetected or misdiagnosed, the first sign of a problem can be death.
Shelley Rosenmiller of St. Charles was diagnosed with HCM and had a surgical procedure in November. She realizes she may have been fortunate.
"I tried to do my aerobics and all of that, and I shudder to think that I could have pushed myself too far," she said. "One thing I could never do was distance run. I would get winded. I've often wondered if it could have been that I had this existing condition."
Meanwhile, Ellen Litteken said her family plans to set up a foundation in Adam's name. She is unsure where the money would be donated but is interested in talking to Mankowitz about increasing awareness.
She said, "If we can help one other kid that would be awesome."
Thursday, June 26, 2008
Cancer Survivor Stories
By BETH DECARBO
The Survivors
Name: Steve Scott
Hometown: Loveland, Ohio (Cincinnati suburb)
Cancer: Colon cancer that spread to the liver
Date diagnosed: Feb. 14, 2004
Status: Cancer-free for 2 ½ years
Name: Andrea Ortega
Hometown: Florence, Ariz.
Cancer: Leukemia
Date diagnosed: June 14, 2007
Name: Faith (didn't want last name used)
Hometown: Erie, Pa.
Cancer: Breast cancer
Date diagnosed: Dec. 19, 2007
The Wall Street Journal: How do caregivers support you in your fight?
Mr. Scott: As I had to travel from Cincinnati to New York for my care, caregivers played a large part in my life. I received chemo locally, but the surgeries and decisions were all made at Memorial Sloan Kettering in New York City. (Doctors in Ohio had declined to operate.)
[Steve Scott and wife]
Steve Scott with his wife
I have a very small family, only my wife, sister, and mother. My sister and wife were my rocks of support. What is most important, in my opinion is that the caregivers be there for the initial doctor appointments (where the devastating news is dispensed), for the first few chemo treatments and for the surgeries.
In addition to the medical help, I regularly visited my psychologist and enlisted the help of a "touch healer" weekly. The combination of these people and my family propelled me to continue chemo beyond what was thought humanly possible (57 rounds).
Andrea Ortega: My mom is my caregiver and without her, this experience would have been horrendous. She was by my side nearly every day that I was in the hospital. She also played "Information Central" for all my family, friends, co-workers, etc.
WSJ: What do close friends and family members do to support you?
Mr. Scott: My caregivers were directly responsible for my winning the battle, in that they encouraged me to fight. My wife and sister would cook meals for me, make me comfortable, remind me of meds and keep things as light as they could.
The most important thing that family/friends can do is keep the patient connected on an emotional level. Upon my diagnosis, I immediately began to detach from everyone. I was given less than 18 months to live, so I wanted everyone else not to feel bad when I left. Navigating the hospital stays, the surgeons, nurses, and oncologists renders the patient disconnected. I had to stay focused and somewhat hardened to keep up the brutal regimen that lasted over two years.
My neighbors were also a big part of my recovery. I felt like less than a person for having cancer, and feared that my neighbors would reject us. Instead they all jumped in with both feet, making a schedule to bring dinners to our home three times a week. I have many cards from the children in the neighborhood and received many visits. Between my family and my neighbors, I was compelled to fight what we were told was a losing battle. That total acceptance and the connectedness was the fuel for me to fight.
Ms. Ortega: I have been blessed with the best family and friends anyone could ever want. Nearly every day while I was in the hospital, someone would call just to chat. On the weekends my room sometimes looked like a social lounge. It's the little things that really make you take notice of those around you. The saying, "You know who your friends are, if they're still around during trouble," really applied in my case.
Faith: After surgery my family and friends really stepped up. They took turns getting my kids to school and cooking meals or just visiting.
WSJ: Do you have advice for bosses and colleagues that could help you at this time?
Mr. Scott: Don't treat us any differently. Don't always ask, "How are you feeling today?" Let the patient know early on that if there is anything you can do, to just let you know. Then let normalcy return to the office. I always craved normalcy.
Ms. Ortega: Again, I was extremely fortunate. My bosses and colleagues rallied around me during this whole experience. I worked in the law enforcement community, and was awed by the show of support I received not only from my own department, but from other surrounding departments. [The support made me] believe that you can beat any odds.
Faith: I think it's important for them to remember that a cancer diagnosis is not just physical, it's emotional. Sometimes your body has healed from the surgery and/or treatment far before your mind. They just need to understand that you'll have good and bad days and although most survivors are not asking for special treatment. They do need a little understanding.
WSJ: Everybody is different, of course. But are there things that people do or say that rub you the wrong way?
Mr. Scott: No. I assume, correctly I believe, that everyone means well when they are talking to me about my disease.
I was a stranger to cancer upon the diagnosis, and knew not where to turn for help. My wife and I had a huge disadvantage in that we have no family within 600 miles, and we knew no one dealing with cancer so we did all the homework, finding the best doctors and therapies without assistance. We were an island doing our own research, so when people ask about cancer, I know they must be genuinely seeking advice. There needs to be a greater awareness among all people, as cancer has become so prevalent.
Ms. Ortega: I kept my sense of humor. As a matter of fact I think that with this experience, it's probably a little better. I would joke about the hair loss, the "Chemo Brain Syndrome", the skin discoloration -- because I knew that someday it would all be gone. Yes, you sometimes get the funny looks or the whispered comments, but all in all who cares? I've learned that life is too precious to worry about whether or not someone is being rude or annoying. Every day is a gift -- that's why they call it the present.
Faith: Personally I get irritated with everyone telling me that it "could be worse" or "at least you got a tummy tuck, too." (I did tram flap reconstruction, which kind of gives a "tummy tuck" at the same time.)
Truthfully, for me, losing my breasts is a big deal, so at the moment it couldn't be worse (even though I know there are worse things to go through). I also can think of a much easier way to get a flatter belly then having your breasts removed and your stomach cut from hip to hip. I try not to let on that these statements bother me because I realize that the people saying it aren't trying to be insensitive they just don't know what else to say.
The Survivors
Name: Steve Scott
Hometown: Loveland, Ohio (Cincinnati suburb)
Cancer: Colon cancer that spread to the liver
Date diagnosed: Feb. 14, 2004
Status: Cancer-free for 2 ½ years
Name: Andrea Ortega
Hometown: Florence, Ariz.
Cancer: Leukemia
Date diagnosed: June 14, 2007
Name: Faith (didn't want last name used)
Hometown: Erie, Pa.
Cancer: Breast cancer
Date diagnosed: Dec. 19, 2007
The Wall Street Journal: How do caregivers support you in your fight?
Mr. Scott: As I had to travel from Cincinnati to New York for my care, caregivers played a large part in my life. I received chemo locally, but the surgeries and decisions were all made at Memorial Sloan Kettering in New York City. (Doctors in Ohio had declined to operate.)
[Steve Scott and wife]
Steve Scott with his wife
I have a very small family, only my wife, sister, and mother. My sister and wife were my rocks of support. What is most important, in my opinion is that the caregivers be there for the initial doctor appointments (where the devastating news is dispensed), for the first few chemo treatments and for the surgeries.
In addition to the medical help, I regularly visited my psychologist and enlisted the help of a "touch healer" weekly. The combination of these people and my family propelled me to continue chemo beyond what was thought humanly possible (57 rounds).
Andrea Ortega: My mom is my caregiver and without her, this experience would have been horrendous. She was by my side nearly every day that I was in the hospital. She also played "Information Central" for all my family, friends, co-workers, etc.
WSJ: What do close friends and family members do to support you?
Mr. Scott: My caregivers were directly responsible for my winning the battle, in that they encouraged me to fight. My wife and sister would cook meals for me, make me comfortable, remind me of meds and keep things as light as they could.
The most important thing that family/friends can do is keep the patient connected on an emotional level. Upon my diagnosis, I immediately began to detach from everyone. I was given less than 18 months to live, so I wanted everyone else not to feel bad when I left. Navigating the hospital stays, the surgeons, nurses, and oncologists renders the patient disconnected. I had to stay focused and somewhat hardened to keep up the brutal regimen that lasted over two years.
My neighbors were also a big part of my recovery. I felt like less than a person for having cancer, and feared that my neighbors would reject us. Instead they all jumped in with both feet, making a schedule to bring dinners to our home three times a week. I have many cards from the children in the neighborhood and received many visits. Between my family and my neighbors, I was compelled to fight what we were told was a losing battle. That total acceptance and the connectedness was the fuel for me to fight.
Ms. Ortega: I have been blessed with the best family and friends anyone could ever want. Nearly every day while I was in the hospital, someone would call just to chat. On the weekends my room sometimes looked like a social lounge. It's the little things that really make you take notice of those around you. The saying, "You know who your friends are, if they're still around during trouble," really applied in my case.
Faith: After surgery my family and friends really stepped up. They took turns getting my kids to school and cooking meals or just visiting.
WSJ: Do you have advice for bosses and colleagues that could help you at this time?
Mr. Scott: Don't treat us any differently. Don't always ask, "How are you feeling today?" Let the patient know early on that if there is anything you can do, to just let you know. Then let normalcy return to the office. I always craved normalcy.
Ms. Ortega: Again, I was extremely fortunate. My bosses and colleagues rallied around me during this whole experience. I worked in the law enforcement community, and was awed by the show of support I received not only from my own department, but from other surrounding departments. [The support made me] believe that you can beat any odds.
Faith: I think it's important for them to remember that a cancer diagnosis is not just physical, it's emotional. Sometimes your body has healed from the surgery and/or treatment far before your mind. They just need to understand that you'll have good and bad days and although most survivors are not asking for special treatment. They do need a little understanding.
WSJ: Everybody is different, of course. But are there things that people do or say that rub you the wrong way?
Mr. Scott: No. I assume, correctly I believe, that everyone means well when they are talking to me about my disease.
I was a stranger to cancer upon the diagnosis, and knew not where to turn for help. My wife and I had a huge disadvantage in that we have no family within 600 miles, and we knew no one dealing with cancer so we did all the homework, finding the best doctors and therapies without assistance. We were an island doing our own research, so when people ask about cancer, I know they must be genuinely seeking advice. There needs to be a greater awareness among all people, as cancer has become so prevalent.
Ms. Ortega: I kept my sense of humor. As a matter of fact I think that with this experience, it's probably a little better. I would joke about the hair loss, the "Chemo Brain Syndrome", the skin discoloration -- because I knew that someday it would all be gone. Yes, you sometimes get the funny looks or the whispered comments, but all in all who cares? I've learned that life is too precious to worry about whether or not someone is being rude or annoying. Every day is a gift -- that's why they call it the present.
Faith: Personally I get irritated with everyone telling me that it "could be worse" or "at least you got a tummy tuck, too." (I did tram flap reconstruction, which kind of gives a "tummy tuck" at the same time.)
Truthfully, for me, losing my breasts is a big deal, so at the moment it couldn't be worse (even though I know there are worse things to go through). I also can think of a much easier way to get a flatter belly then having your breasts removed and your stomach cut from hip to hip. I try not to let on that these statements bother me because I realize that the people saying it aren't trying to be insensitive they just don't know what else to say.
How to Support a Loved One Reeling From Cancer Diagnosis
By ELIZABETH BERNSTEIN
A few years ago, my sister called to tell me my mother had just been diagnosed with leukemia. After we hung up and I prepared to call my mom, I realized I had absolutely no idea what to say to her. It took me four hours to make the call.
I learned a lasting lesson that day: There isn't anything correct to say to someone reeling from the shock of a cancer diagnosis. But in helping my mom through her illness, I also discovered that some ways of showing support are better than others. And while there's no right approach, there may indeed be wrong things to say or do.
Cancer survivors explain how support from friends and family was critical to fighting the disease.
Even as the medical community has gotten better at detecting and treating cancer early -- allowing many patients to live longer -- people are understandably overwhelmed by the devastating news of a diagnosis. So family and friends grapple with how to best offer comfort.
Not every cancer patient wants the same type of support. Some want to talk about their illness and accept help willingly. Others struggle to preserve their independence and behave, at least outwardly, as if nothing is wrong.
So how do you know how best to offer assistance to someone struggling with a serious illness? I posed this question to oncologists, psychologists and patients.
"Loved ones don't know what to do, and they don't want to make a terrible error," says Marisa Weiss, an oncologist and founder of Breastcancer.org, a nonprofit organization. "This fear keeps people from doing anything."
More help for patients and caregivers:
• www.breastcancer.org has message boards for patients and families.
• www.lotsahelpinghands.com emphasizes patients' practical needs.
• www.talkingaboutcancer.com deals with the emotional impact of cancer.
• www.carepages.com allows families to set up sites to share information about the person who is sick.
While that's the worst mistake you can make, experts say, there are a number of other slip-ups. Well-meaning friends and family members often ask inappropriate questions, such as the patient's prognosis. They offer theories on why their loved one got sick, give unsolicited advice or insist that "everything is going to be just fine."
When Lori Hope was diagnosed with lung cancer in 2002, she says many people asked her if she had been a smoker. Some told her of people they knew who had died of cancer. One friend asked why she was going on vacation since she would probably worry the whole time. "People tend to rush in without thinking," she says.
In response, Ms. Hope wrote a book, "Help Me Live: 20 Things People with Cancer Want You to Know." Her advice: Admit you don't know what to say. Apologize in advance for doing or saying anything upsetting. Then be sure to tell your friend you will be there for her.
"Bumbling is OK," says Susan Brace, a psychologist in Evergreen, Colo., whose specialty is treating terminally ill patients. "You're in a situation you've never been in before, so you make up the rules as you go along."
In general, experts say, you should take your lead from the person who is sick. If she wants to talk about her illness, then listen. Don't be afraid of emotions. "Being there, listening and being supportive is a powerful role," Dr. Weiss says. "If the person feels comfortable crying in front of you, be honored, because you fulfilled a really important need."
What do you say to a loved one suffering from a potentially terminal illness? Beyond words, what can you do to show you care? Discuss
It's critical not to treat your friend just as a patient. So remember to ask about other aspects of her life, such as her children. Ask her permission before you share news of her illness with others. Don't recommend books or treatments without first inquiring if she'd like to hear about them.
You should also ask exactly what type of help your loved one needs. You can offer to pick up groceries, provide transportation or return phone calls. And don't be deterred if your offer of help is declined. People who are diagnosed with a major illness often don't know what they will need at first. In addition, accepting help can be frightening for people accustomed to being independent. Keep offering help.
And if your friend, co-worker or family member isn't returning calls, don't take it personally. She may not have the energy or time to call you back. Stay in touch anyway.
As cancer awareness has grown in recent years, so have the resources to help people offer support to patients. Web sites for the American Cancer Society (www.cancer.org) and the National Cancer Institute (www.cancer.gov) offer information for caregivers, family and friends. There are books, too: "Help Me Live," by Ms. Hope; "What Can I Do to Help," by Deborah Hutton; "Cancer Etiquette," by Rosanne Kalick; "The Etiquette of Illness," by Susan P. Halpern.
In short, there is help for people who want to help their friends and loved ones. "You should be there for your friends," says Howard Leventhal, professor of psychology at Rutgers University and director of the Center for the Study of Health Beliefs and Behavior. "And being there doesn't require much more than enduring their pain and trying to be useful."
A few years ago, my sister called to tell me my mother had just been diagnosed with leukemia. After we hung up and I prepared to call my mom, I realized I had absolutely no idea what to say to her. It took me four hours to make the call.
I learned a lasting lesson that day: There isn't anything correct to say to someone reeling from the shock of a cancer diagnosis. But in helping my mom through her illness, I also discovered that some ways of showing support are better than others. And while there's no right approach, there may indeed be wrong things to say or do.
Cancer survivors explain how support from friends and family was critical to fighting the disease.
Even as the medical community has gotten better at detecting and treating cancer early -- allowing many patients to live longer -- people are understandably overwhelmed by the devastating news of a diagnosis. So family and friends grapple with how to best offer comfort.
Not every cancer patient wants the same type of support. Some want to talk about their illness and accept help willingly. Others struggle to preserve their independence and behave, at least outwardly, as if nothing is wrong.
So how do you know how best to offer assistance to someone struggling with a serious illness? I posed this question to oncologists, psychologists and patients.
"Loved ones don't know what to do, and they don't want to make a terrible error," says Marisa Weiss, an oncologist and founder of Breastcancer.org, a nonprofit organization. "This fear keeps people from doing anything."
More help for patients and caregivers:
• www.breastcancer.org has message boards for patients and families.
• www.lotsahelpinghands.com emphasizes patients' practical needs.
• www.talkingaboutcancer.com deals with the emotional impact of cancer.
• www.carepages.com allows families to set up sites to share information about the person who is sick.
While that's the worst mistake you can make, experts say, there are a number of other slip-ups. Well-meaning friends and family members often ask inappropriate questions, such as the patient's prognosis. They offer theories on why their loved one got sick, give unsolicited advice or insist that "everything is going to be just fine."
When Lori Hope was diagnosed with lung cancer in 2002, she says many people asked her if she had been a smoker. Some told her of people they knew who had died of cancer. One friend asked why she was going on vacation since she would probably worry the whole time. "People tend to rush in without thinking," she says.
In response, Ms. Hope wrote a book, "Help Me Live: 20 Things People with Cancer Want You to Know." Her advice: Admit you don't know what to say. Apologize in advance for doing or saying anything upsetting. Then be sure to tell your friend you will be there for her.
"Bumbling is OK," says Susan Brace, a psychologist in Evergreen, Colo., whose specialty is treating terminally ill patients. "You're in a situation you've never been in before, so you make up the rules as you go along."
In general, experts say, you should take your lead from the person who is sick. If she wants to talk about her illness, then listen. Don't be afraid of emotions. "Being there, listening and being supportive is a powerful role," Dr. Weiss says. "If the person feels comfortable crying in front of you, be honored, because you fulfilled a really important need."
What do you say to a loved one suffering from a potentially terminal illness? Beyond words, what can you do to show you care? Discuss
It's critical not to treat your friend just as a patient. So remember to ask about other aspects of her life, such as her children. Ask her permission before you share news of her illness with others. Don't recommend books or treatments without first inquiring if she'd like to hear about them.
You should also ask exactly what type of help your loved one needs. You can offer to pick up groceries, provide transportation or return phone calls. And don't be deterred if your offer of help is declined. People who are diagnosed with a major illness often don't know what they will need at first. In addition, accepting help can be frightening for people accustomed to being independent. Keep offering help.
And if your friend, co-worker or family member isn't returning calls, don't take it personally. She may not have the energy or time to call you back. Stay in touch anyway.
As cancer awareness has grown in recent years, so have the resources to help people offer support to patients. Web sites for the American Cancer Society (www.cancer.org) and the National Cancer Institute (www.cancer.gov) offer information for caregivers, family and friends. There are books, too: "Help Me Live," by Ms. Hope; "What Can I Do to Help," by Deborah Hutton; "Cancer Etiquette," by Rosanne Kalick; "The Etiquette of Illness," by Susan P. Halpern.
In short, there is help for people who want to help their friends and loved ones. "You should be there for your friends," says Howard Leventhal, professor of psychology at Rutgers University and director of the Center for the Study of Health Beliefs and Behavior. "And being there doesn't require much more than enduring their pain and trying to be useful."
Wednesday, June 25, 2008
Industry Giants Push Obesity Surgery
By RHONDA L. RUNDLE
Medical-device makers, venture capitalists and surgeons are racing to turn a once-controversial weight-loss procedure into the next big thing in elective surgery.
Once dismissed by some surgeons as a gimmick, gastric banding -- in which a silicone band is wrapped around the upper stomach to restrict food intake -- is now the focus of a fierce competition pitting consumer-products giant Johnson & Johnson against Botox maker Allergan Inc. Venture-capital-backed outpatient centers are popping up to implant the bands. Growing ranks of surgeons are touting the procedure at free public seminars. All see a vast market in a country where diet and exercise programs have failed to slow an obesity epidemic.
• What's New: Once dismissed as a gimmick, gastric banding is now seen by some in the medical industry as the next big thing in elective surgery.
• The Players: Industry giants Johnson & Johnson and Allergan, as well as venture-capital firms that are backing outpatient centers.
• Patient Concerns: The silicone device can shift after surgery, causing it to lose effectiveness. And patients may eventually need another surgery to replace or remove it.
Like any major surgery, gastric banding carries risks of infection and even death. The silicone device can shift after surgery, causing it to lose effectiveness. No one knows how long it will last inside the body, so patients may eventually need another surgery to replace or remove it. And some surgeons say the weight loss achieved through banding isn't as much as other weight-loss procedures. "There's no question that advertising and the commercialization of the band is what's driving it," says J.K. Champion, a bariatric surgeon in Atlanta. Bariatric is a medical term derived from the Greek word "baros" meaning "weight."
Weight-loss surgery remains rare, despite the fact that about a third of adult Americans are obese -- and despite evidence that the procedures improve overall health. Only an estimated 1% of the nation's 15 million morbidly obese people, typically those who are 100 pounds or more overweight, have undergone surgery. That may be partly due to the fact that the most popular weight-loss surgery to date has been gastric bypass, a more invasive procedure.
A number of recent studies suggest that gastric banding is safer than gastric bypass, and some data suggest comparable, if slower, weight-loss results. Improvements in surgical techniques and follow-up care have helped gastric banding become the dominant weight-loss operation in Europe and Australia. Credit Suisse analyst Marc Goodman predicts that gastric banding will account for half of all weight-loss surgeries by 2010, up from about 30% today.
Treatment for Diabetes
And banding is emerging as a treatment for diabetes: It effectively cured the disease in 73% of treated adults who were lighter than people who typically undergo weight-loss surgery, according to an Australian study published in the Journal of the American Medical Association in January. Diabetes remission closely tracks weight loss.
Some parts of the country are already bombarded with gastric-banding ads. In one television spot airing in Texas for True Results, a Dallas-based chain of six outpatient centers, a young woman says, "I'm going to be around much longer for my family," after losing 178 pounds. Unlike the band makers, physicians and clinics can make advertising claims that aren't subject to the strict rules imposed by the Food and Drug Administration.
"We see patients come into our office at the Cleveland Clinic who have heard about the band," says Philip Schauer, director of the Ohio-based Cleveland Clinic's bariatric and metabolic institute. He adds that the ads exert a powerful influence. "You don't see commercials for gastric bypass," he says.
In gastric bypass, the surgeon reroutes the gastrointestinal system. But gastric bands don't alter the body's basic plumbing. Tiny incisions are made in the abdomen, and a camera is passed through one of them so the surgeon can view the operation site on a video monitor. A band made of silicone is fastened around the upper stomach to create a small pouch that limits food intake.
Periodic Adjustments
After the band is installed, doctors make periodic adjustments depending on the patient's weight loss, food cravings and physical reactions to the band. Patients typically need four to six adjustments in the first year, and two or three in each of the next couple of years. If the band is removed, the patient may revert to old eating habits.
Not all surgeons have jumped on the bandwagon. Some believe gastric bypass is better for the super obese, who may be more than 200 pounds overweight. "We're finding patients have different demands," says Dr. Schauer.
What's more, the duration of weight loss for either procedure is still unknown. The possible complications of banding include slippage of the device or erosion into the stomach. Many health insurers are still reluctant to cover the procedures -- leaving patients to pay, or borrow, the $15,000 to $40,000 to finance the surgery.
But some patients are storming ahead anyway. "It's the best thing I've ever done for myself," says Patricia Zeolla, a 59-year-old teacher in New York City, who learned of the procedure via a Web site.
Concluding that gastric bypass is too "scary," Ms. Zeolla opted for gastric banding instead at New York's Lenox Hill Hospital; her insurer, initially resistant, eventually agreed to foot the bill after her surgeon intervened. In one year, Ms. Zeolla whittled her weight down to 166 pounds from 286 pounds.
The first adjustable gastric bands were implanted in Europe and Australia in the early 1990s. The procedure had many early detractors. A high rate of surgical complications made surgeons wary. Inamed Corp., the company pitching the Lap-Band, was better known for its breast implants and had a poor reputation with bariatric surgeons eager to distance themselves from cosmetic surgeons.
"There was a mind-set that gastric bypass was better," says Paul O'Brien, an author of the recent Australian diabetes study and director of the Centre for Obesity Research and Education at Monash University in Melbourne, Australia. Dr. O'Brien did his first Lap-Band surgery in 1994 in Australia. Since then, he and his colleagues have studied thousands of patients.
Gastric banding exploded after 2006, when Inamed was acquired by Allergan, best known for the antiwrinkle drug Botox. Allergan bought Inamed for its portfolio of cosmetic medical devices, but "we quickly realized the real jewel was Lap-Band," David E.I. Pyott, chief executive officer, said recently at Allergan's offices in Irvine, Calif.
In November 2006, Allergan began advertising the Lap-Band directly to consumers, an unusual tactic for a surgical device. The company aired a television commercial featuring a distressed woman trying to "tame" a roaring lion pulling her to the refrigerator.
The campaign was an immediate success: Within a week, visits to Allergan's Lap-Band Web site had increased nearly fivefold. Sales of Lap-Band and other obesity-intervention devices soared 50% last year to $270 million, making them Allergan's fastest-growing product line.
Enter Johnson & Johnson. Last September, J&J's Ethicon Endo-Surgical unit received FDA marketing approval to sell its band, dubbed Realize. In recent months, J&J has been bringing obesity surgeons to weekend training sessions to teach them how to implant the device. Bariatric surgeons such as Alan Wittgrove of La Jolla, Calif., who once pooh-poohed banding, say that J&J's efforts are validating banding as an option.
Quiet Launch
In January, J&J quietly launched a snazzy Web site that has surgeons buzzing. The site, www.realizemysuccess.net, provides patients with a suite of customizable online tools. After receiving a personal code, a patient can create an image of himself or herself by answering a series of questions, then adjust the images to see how they would look 25 or 35 or 50 pounds lighter. Patients can send daily alerts to their cellphones at set times to remind themselves to avoid the office candy dish.
Patients can even see what they might look like in a new wardrobe, for instance, just as shoppers can when visiting retailer Lands' End's site. The site also helps surgeons track patients' weight-loss progress. Surgeons receive alerts if a patient doesn't come in for follow-up care, or begins gaining weight.
J&J says it spent nearly two years developing the site, which draws on ideas from other consumer businesses. The site's customizable options are intended to keep patients on track, since studies show that long-term success at weight loss is driven by what happens to change behavior after surgery, says Tom O'Brien, Ethicon's director of marketing. J&J adds that a media launch touting its Realize band is on the drawing board.
Despite Allergan's head start, Credit Suisse's Mr. Goodman expects J&J to grab a chunk of the market almost immediately. Although both companies charge roughly the same amount -- about $3,000 -- for their bands, J&J has a small army of specialized salespeople selling other bariatric surgery supplies and instruments.
Adapting Strategies
Allergan isn't backing down. Adapting strategies that built Botox into an iconic brand, Allergan is rolling out a new multimillion-dollar Lap-Band campaign. "If I lost the weight...I could stop taking so many medications," says one heavyset woman in a television spot that started airing in March. Shown on ABC, CBS and cable stations, the spot targets female audiences of daytime soap operas. Allergan has also revamped its Lap-Band Web site with a support program for patients before and after surgery.
In a bid to neutralize its disadvantages in the surgical market, Allergan recently signed a co-marketing pact with Covidien Ltd., J&J's largest competitor in the bariatric-surgery field. Covidien's sales force will scout out general surgeons interested in the banding business.
"We threw [J&J] a curveball with Covidien," Allergan's Mr. Pyott boasts. The arrangement also puts a third large company behind the push toward gastric banding, raising its profile, he adds. Mr. Pyott says he is focused on growing the overall market for banding, rather than defending Allergan's share vis-à-vis J&J.
Gastric banding is also being promoted by a growing number of outpatient banding centers. Backed by venture capitalists, the clinics buy specially designed waiting-room furniture, operating tables and scales to accommodate large people. Facilities are located a few steps from parking spaces to make access easier for outsized patients. The centers spend liberally on marketing to lure cash-paying customers. Banding typically costs $17,000, versus $25,000 for gastric-bypass surgery, though surgeons sometimes charge much more.
The American Institute of Gastric Banding, which operates the True Results clinics, says it has performed more than 11,000 surgeries since 2001. In Texas, "we basically took the Lasik playbook and ran it for banding," says founder Peter Gottlieb, referring to the popular eyesight-correction surgery. Closely held oBand Surgery Centers Inc., with surgery centers in Los Angeles, Las Vegas and Orange, Calif., has a billboard on a busy boulevard in Los Angeles and is running commercials on the "Dr. Phil" and "Oprah Winfrey" television shows.
Then there is the growing number of surgeons who are joining the fray. Unlike gastric bypass, gastric banding is a relatively simple procedure, making it easy for surgeons to pick up.
Now, scores of surgeons across the country are touting weight-loss surgery at free seminars. Patients find them on Web sites sponsored by Allergan and J&J, as well as the Web sites of individual surgeons, hospitals and outpatient centers. The sites invite users to punch in a zip code to find seminars in their geographic area. JourneyLite, a network managed by closely held Bariatric Partners Inc., recently directed prospective patients to such a meeting in Ventura, Calif.
[chart]
About 50 people, mostly middle-aged women, gathered in a nondescript room in the office suite of a local bariatric surgeon. Dressed in blue surgical scrubs, Helmuth Billy chatted for three hours about everything from the benefits of losing weight to the calories in a Starbuck's caramel macchiato coffee. The "personal cost of obesity" adds up to $15,568 a year, including medications and food, according to a slide Dr. Billy showed, which was provided by Allergan. The total turned out to be close to what the surgeon charges for surgery, including follow-up visits.
One of his patients, a dark-haired woman in her 50s, stood up. "My name is Sandi and I weighed 424 pounds in May 2004, before losing 250 pounds," said Sandi Henderson, who adds that she swims every morning and has tossed out her old medications. "I put my food-addiction money toward shopping and exercise," she laughed. Since her insurance specifically excluded bariatric surgery, Ms. Henderson says she used some of her retirement savings to pay for the procedure.
The band makers are hoping to change insurers' minds. While Inamed had employed only five people in its reimbursement department, Allergan has 100 people in that job today, and "we are monitoring how we're moving the needle," says Mr. Pyott. This year, the team is targeting major employers who make their own decisions about coverage.
Insurers are slowly loosening their purse strings. The federal agency that oversees the Medicare program instituted coverage for bariatric surgery in early 2006. That was followed by a favorable assessment on gastric banding last year from the BlueCross BlueShield Association, whose member health plans look to it for guidance. In September, the federal Tricare program, which provides coverage for 9.2 million active and retired U.S. military personnel, as well as their families, said it would cover gastric banding, retroactive to February 2007.
Allergan is also working to expand Lap-Band applications to younger and lighter patients. It is sponsoring human tests in teens between the ages of 14 and 17 as well as adults who aren't as heavy as most bariatric surgery candidates. To make the band adjustments easier, the company is developing a remote-control system that would allow surgeons to loosen or tighten the devices telemetrically.
Medical-device makers, venture capitalists and surgeons are racing to turn a once-controversial weight-loss procedure into the next big thing in elective surgery.
Once dismissed by some surgeons as a gimmick, gastric banding -- in which a silicone band is wrapped around the upper stomach to restrict food intake -- is now the focus of a fierce competition pitting consumer-products giant Johnson & Johnson against Botox maker Allergan Inc. Venture-capital-backed outpatient centers are popping up to implant the bands. Growing ranks of surgeons are touting the procedure at free public seminars. All see a vast market in a country where diet and exercise programs have failed to slow an obesity epidemic.
• What's New: Once dismissed as a gimmick, gastric banding is now seen by some in the medical industry as the next big thing in elective surgery.
• The Players: Industry giants Johnson & Johnson and Allergan, as well as venture-capital firms that are backing outpatient centers.
• Patient Concerns: The silicone device can shift after surgery, causing it to lose effectiveness. And patients may eventually need another surgery to replace or remove it.
Like any major surgery, gastric banding carries risks of infection and even death. The silicone device can shift after surgery, causing it to lose effectiveness. No one knows how long it will last inside the body, so patients may eventually need another surgery to replace or remove it. And some surgeons say the weight loss achieved through banding isn't as much as other weight-loss procedures. "There's no question that advertising and the commercialization of the band is what's driving it," says J.K. Champion, a bariatric surgeon in Atlanta. Bariatric is a medical term derived from the Greek word "baros" meaning "weight."
Weight-loss surgery remains rare, despite the fact that about a third of adult Americans are obese -- and despite evidence that the procedures improve overall health. Only an estimated 1% of the nation's 15 million morbidly obese people, typically those who are 100 pounds or more overweight, have undergone surgery. That may be partly due to the fact that the most popular weight-loss surgery to date has been gastric bypass, a more invasive procedure.
A number of recent studies suggest that gastric banding is safer than gastric bypass, and some data suggest comparable, if slower, weight-loss results. Improvements in surgical techniques and follow-up care have helped gastric banding become the dominant weight-loss operation in Europe and Australia. Credit Suisse analyst Marc Goodman predicts that gastric banding will account for half of all weight-loss surgeries by 2010, up from about 30% today.
Treatment for Diabetes
And banding is emerging as a treatment for diabetes: It effectively cured the disease in 73% of treated adults who were lighter than people who typically undergo weight-loss surgery, according to an Australian study published in the Journal of the American Medical Association in January. Diabetes remission closely tracks weight loss.
Some parts of the country are already bombarded with gastric-banding ads. In one television spot airing in Texas for True Results, a Dallas-based chain of six outpatient centers, a young woman says, "I'm going to be around much longer for my family," after losing 178 pounds. Unlike the band makers, physicians and clinics can make advertising claims that aren't subject to the strict rules imposed by the Food and Drug Administration.
"We see patients come into our office at the Cleveland Clinic who have heard about the band," says Philip Schauer, director of the Ohio-based Cleveland Clinic's bariatric and metabolic institute. He adds that the ads exert a powerful influence. "You don't see commercials for gastric bypass," he says.
In gastric bypass, the surgeon reroutes the gastrointestinal system. But gastric bands don't alter the body's basic plumbing. Tiny incisions are made in the abdomen, and a camera is passed through one of them so the surgeon can view the operation site on a video monitor. A band made of silicone is fastened around the upper stomach to create a small pouch that limits food intake.
Periodic Adjustments
After the band is installed, doctors make periodic adjustments depending on the patient's weight loss, food cravings and physical reactions to the band. Patients typically need four to six adjustments in the first year, and two or three in each of the next couple of years. If the band is removed, the patient may revert to old eating habits.
Not all surgeons have jumped on the bandwagon. Some believe gastric bypass is better for the super obese, who may be more than 200 pounds overweight. "We're finding patients have different demands," says Dr. Schauer.
What's more, the duration of weight loss for either procedure is still unknown. The possible complications of banding include slippage of the device or erosion into the stomach. Many health insurers are still reluctant to cover the procedures -- leaving patients to pay, or borrow, the $15,000 to $40,000 to finance the surgery.
But some patients are storming ahead anyway. "It's the best thing I've ever done for myself," says Patricia Zeolla, a 59-year-old teacher in New York City, who learned of the procedure via a Web site.
Concluding that gastric bypass is too "scary," Ms. Zeolla opted for gastric banding instead at New York's Lenox Hill Hospital; her insurer, initially resistant, eventually agreed to foot the bill after her surgeon intervened. In one year, Ms. Zeolla whittled her weight down to 166 pounds from 286 pounds.
The first adjustable gastric bands were implanted in Europe and Australia in the early 1990s. The procedure had many early detractors. A high rate of surgical complications made surgeons wary. Inamed Corp., the company pitching the Lap-Band, was better known for its breast implants and had a poor reputation with bariatric surgeons eager to distance themselves from cosmetic surgeons.
"There was a mind-set that gastric bypass was better," says Paul O'Brien, an author of the recent Australian diabetes study and director of the Centre for Obesity Research and Education at Monash University in Melbourne, Australia. Dr. O'Brien did his first Lap-Band surgery in 1994 in Australia. Since then, he and his colleagues have studied thousands of patients.
Gastric banding exploded after 2006, when Inamed was acquired by Allergan, best known for the antiwrinkle drug Botox. Allergan bought Inamed for its portfolio of cosmetic medical devices, but "we quickly realized the real jewel was Lap-Band," David E.I. Pyott, chief executive officer, said recently at Allergan's offices in Irvine, Calif.
In November 2006, Allergan began advertising the Lap-Band directly to consumers, an unusual tactic for a surgical device. The company aired a television commercial featuring a distressed woman trying to "tame" a roaring lion pulling her to the refrigerator.
The campaign was an immediate success: Within a week, visits to Allergan's Lap-Band Web site had increased nearly fivefold. Sales of Lap-Band and other obesity-intervention devices soared 50% last year to $270 million, making them Allergan's fastest-growing product line.
Enter Johnson & Johnson. Last September, J&J's Ethicon Endo-Surgical unit received FDA marketing approval to sell its band, dubbed Realize. In recent months, J&J has been bringing obesity surgeons to weekend training sessions to teach them how to implant the device. Bariatric surgeons such as Alan Wittgrove of La Jolla, Calif., who once pooh-poohed banding, say that J&J's efforts are validating banding as an option.
Quiet Launch
In January, J&J quietly launched a snazzy Web site that has surgeons buzzing. The site, www.realizemysuccess.net, provides patients with a suite of customizable online tools. After receiving a personal code, a patient can create an image of himself or herself by answering a series of questions, then adjust the images to see how they would look 25 or 35 or 50 pounds lighter. Patients can send daily alerts to their cellphones at set times to remind themselves to avoid the office candy dish.
Patients can even see what they might look like in a new wardrobe, for instance, just as shoppers can when visiting retailer Lands' End's site. The site also helps surgeons track patients' weight-loss progress. Surgeons receive alerts if a patient doesn't come in for follow-up care, or begins gaining weight.
J&J says it spent nearly two years developing the site, which draws on ideas from other consumer businesses. The site's customizable options are intended to keep patients on track, since studies show that long-term success at weight loss is driven by what happens to change behavior after surgery, says Tom O'Brien, Ethicon's director of marketing. J&J adds that a media launch touting its Realize band is on the drawing board.
Despite Allergan's head start, Credit Suisse's Mr. Goodman expects J&J to grab a chunk of the market almost immediately. Although both companies charge roughly the same amount -- about $3,000 -- for their bands, J&J has a small army of specialized salespeople selling other bariatric surgery supplies and instruments.
Adapting Strategies
Allergan isn't backing down. Adapting strategies that built Botox into an iconic brand, Allergan is rolling out a new multimillion-dollar Lap-Band campaign. "If I lost the weight...I could stop taking so many medications," says one heavyset woman in a television spot that started airing in March. Shown on ABC, CBS and cable stations, the spot targets female audiences of daytime soap operas. Allergan has also revamped its Lap-Band Web site with a support program for patients before and after surgery.
In a bid to neutralize its disadvantages in the surgical market, Allergan recently signed a co-marketing pact with Covidien Ltd., J&J's largest competitor in the bariatric-surgery field. Covidien's sales force will scout out general surgeons interested in the banding business.
"We threw [J&J] a curveball with Covidien," Allergan's Mr. Pyott boasts. The arrangement also puts a third large company behind the push toward gastric banding, raising its profile, he adds. Mr. Pyott says he is focused on growing the overall market for banding, rather than defending Allergan's share vis-à-vis J&J.
Gastric banding is also being promoted by a growing number of outpatient banding centers. Backed by venture capitalists, the clinics buy specially designed waiting-room furniture, operating tables and scales to accommodate large people. Facilities are located a few steps from parking spaces to make access easier for outsized patients. The centers spend liberally on marketing to lure cash-paying customers. Banding typically costs $17,000, versus $25,000 for gastric-bypass surgery, though surgeons sometimes charge much more.
The American Institute of Gastric Banding, which operates the True Results clinics, says it has performed more than 11,000 surgeries since 2001. In Texas, "we basically took the Lasik playbook and ran it for banding," says founder Peter Gottlieb, referring to the popular eyesight-correction surgery. Closely held oBand Surgery Centers Inc., with surgery centers in Los Angeles, Las Vegas and Orange, Calif., has a billboard on a busy boulevard in Los Angeles and is running commercials on the "Dr. Phil" and "Oprah Winfrey" television shows.
Then there is the growing number of surgeons who are joining the fray. Unlike gastric bypass, gastric banding is a relatively simple procedure, making it easy for surgeons to pick up.
Now, scores of surgeons across the country are touting weight-loss surgery at free seminars. Patients find them on Web sites sponsored by Allergan and J&J, as well as the Web sites of individual surgeons, hospitals and outpatient centers. The sites invite users to punch in a zip code to find seminars in their geographic area. JourneyLite, a network managed by closely held Bariatric Partners Inc., recently directed prospective patients to such a meeting in Ventura, Calif.
[chart]
About 50 people, mostly middle-aged women, gathered in a nondescript room in the office suite of a local bariatric surgeon. Dressed in blue surgical scrubs, Helmuth Billy chatted for three hours about everything from the benefits of losing weight to the calories in a Starbuck's caramel macchiato coffee. The "personal cost of obesity" adds up to $15,568 a year, including medications and food, according to a slide Dr. Billy showed, which was provided by Allergan. The total turned out to be close to what the surgeon charges for surgery, including follow-up visits.
One of his patients, a dark-haired woman in her 50s, stood up. "My name is Sandi and I weighed 424 pounds in May 2004, before losing 250 pounds," said Sandi Henderson, who adds that she swims every morning and has tossed out her old medications. "I put my food-addiction money toward shopping and exercise," she laughed. Since her insurance specifically excluded bariatric surgery, Ms. Henderson says she used some of her retirement savings to pay for the procedure.
The band makers are hoping to change insurers' minds. While Inamed had employed only five people in its reimbursement department, Allergan has 100 people in that job today, and "we are monitoring how we're moving the needle," says Mr. Pyott. This year, the team is targeting major employers who make their own decisions about coverage.
Insurers are slowly loosening their purse strings. The federal agency that oversees the Medicare program instituted coverage for bariatric surgery in early 2006. That was followed by a favorable assessment on gastric banding last year from the BlueCross BlueShield Association, whose member health plans look to it for guidance. In September, the federal Tricare program, which provides coverage for 9.2 million active and retired U.S. military personnel, as well as their families, said it would cover gastric banding, retroactive to February 2007.
Allergan is also working to expand Lap-Band applications to younger and lighter patients. It is sponsoring human tests in teens between the ages of 14 and 17 as well as adults who aren't as heavy as most bariatric surgery candidates. To make the band adjustments easier, the company is developing a remote-control system that would allow surgeons to loosen or tighten the devices telemetrically.
Tuesday, June 24, 2008
Rising Challenger Takes On Elder-Care System
By LUCETTE LAGNADO
June 24, 2008; Page A1
PRINCETON, N.J. -- In the spring of 2001, Bill Thomas, dressed in his usual sweat shirt and Birkenstock sandals, entered the buttoned-down halls of the Robert Wood Johnson Foundation. His message: Nursing homes need to be taken out of business. "It's time to turn out the lights," he declared.
"Green Houses," smaller, home-like environments for seniors, are a growing alternative to larger, more clinical elder-care facilities. And while the Robert Wood Johnson Foundation is contributing millions to build more, obstacles remain.
Cautious but intrigued, foundation executives handed Dr. Thomas a modest $300,000 grant several months later. Now the country's fourth-largest philanthropy is throwing its considerable weight behind the 48-year-old physician's vision of "Green Houses," an eight-year-old movement to replace large nursing homes with small, homelike facilities for 10 to 12 residents. The foundation is hoping that through its support, Green Houses will soon be erected in all 50 states, up from the 41 Green Houses now in 10 states.
"We want to transform a broken system of care," says Jane Isaacs Lowe, who oversees the foundation's "Vulnerable Populations portfolio." "I don't want to be in a wheelchair in a hallway when I am 85."
The foundation's undertaking represents the most ambitious effort to date to turn a nice idea into a serious challenger to the nation's system of 16,000 nursing homes. To its proponents, Green Houses are nothing less than a revolution that could overthrow what they see as the rigid, impersonal, at times degrading life the elderly can experience at large institutions.
Susan Feeney, a spokesperson for the American Health Care Association, which represents thousands of for-profit and not-for-profit nursing homes, says the criticisms levied against the industry by Dr. Thomas and his supporters are "overly harsh." She says many nursing homes are embracing cultural changes to create a more homelike feel. "While it may not be scrapping a large building...we are changing," she says.
Green Houses face a host of hurdles. Many Green House builders say they've encountered a thicket of elder-care regulations. It takes enormous capital to build new homes from scratch. Plus, experts say the concept faces stiff resistance from many parts of the existing nursing-home system. Traditional nursing homes, many of which care for 100 to 200 patients, are predicated on economies of scale -- the larger the home, the cheaper it is to care for each individual resident.
Foundation officials acknowledge they don't know whether Green Houses are a viable economic model. But they've decided not to wait for an answer. Hewing to its recent strategy of making "big bets" on ideas to change social norms, Robert Wood Johnson is investing $15 million over five years -- one of the bigger grants the institution has handed out to a single entity.
The foundation, which has $10 billion in assets, is trying to encourage the building of Green Houses and is directing the cash to NCB Capital Impact, a Washington, D.C.-based not-for-profit that has been offering consulting, education, architectural and other help to any party interested in operating a Green House. The foundation is also studying the viability of Green Houses and says more support could follow.
"Robert Wood Johnson is making an important investment to try to make sure there is a sufficient cadre of early adopters of the Green House model -- and research to make sure the model is actually working," says Thomas Hamilton, who oversees nursing-home quality and regulatory issues for the Centers for Medicare & Medicaid Services. He says his agency is trying to coax nursing homes into changing their cultures and adopting more humane, "patient-centered" models such as the Green House.
The $122 billion nursing-home industry arose from the 1965 birth of Medicare and Medicaid, the government health-insurance programs for the elderly and poor that provide billions in government reimbursements. Made up of both not-for-profit and for-profit companies, the industry still generates most of its revenue from Medicaid and Medicare.
Now, many nursing homes are aging, and the industry has suffered through so many scandals involving patient care that many elderly shun the thought of entering such institutions. A 2003 survey by the AARP, an advocacy group for older Americans, found that just 1% of Americans over 50 with a disability wanted to move to a nursing home.
In recent years there have been attempts to create more popular alternatives, with mixed results. Assisted living, an ambitious effort begun in the 1980s to allow seniors to live independently in apartments and other group settings, has proved very popular but it "serves the needs of people who are relatively wealthy and relatively healthy," Dr. Thomas says. (Ms. Feeney of the American Health Care Association says the number of poor Medicaid elderly in assisted living is small but will grow.)
Avoided Issue
While Robert Wood Johnson has historically taken a substantial interest in issues affecting the elderly, for years it avoided funding nursing homes or even nursing-home reform. "Bluntly, trying to make change in a system that was uninterested in change didn't seem like a good investment," says Ms. Lowe.
Ms. Lowe and her foundation colleagues began to shift that stance after their meeting with Dr. Thomas. A native of upstate New York, Dr. Thomas headed to Massachusetts to get his degree at Harvard Medical School, then returned to work as a doctor in a local nursing home. He says he was troubled by the experience. "I was distressed by the amount of emotional suffering that people were encountering even when they had good medical care," he says.
Dr. Thomas spent years plumbing the issue, even penning a one-man play about a mythical land where elders were the heart of society. Further inspired by his two young daughters, both severely disabled and cared for at home, Dr. Thomas decided that changing nursing homes from within wouldn't be enough, and sat down "with a clean piece of paper" to re-imagine elder care.
Tall, sporting a beard and a mane of long, curly brown hair, Dr. Thomas showed up at Robert Wood Johnson's bucolic campus in 2001 attired in his usual casual garb -- he says he wasn't about to change his ways and decided he was "going there to rattle the cages." "This is a formal place," Ms. Lowe says. "In this organization, when someone comes in Birkenstocks and jeans and a hoodie you think, 'This must be the electrician.'"
But it was Dr. Thomas's electric delivery -- officials liken him to an evangelist -- that got the group's attention. "Our energy needs to be around how to replace nursing homes. Not replace the building but replace the idea that older people can be taken away and put into an institution," Dr. Thomas recalls saying. He described his vision of homelike places where elderly residents could gather, dine together and sit before a blazing fire.
Though she was taken aback by Dr. Thomas's attire, Ms. Lowe says she grew fascinated by his idea of a place where seniors could flourish and grow, yet still receive the same high level of skilled nursing care that nursing homes offer.
In 2003, Ms. Lowe traveled to Tupelo, Miss., where the first Green House had just opened, and says she marveled at how different it was from a well-regarded nursing home she'd previously visited. "Instead of thinking, 'I don't want to be here,' it was, 'How can I move in?'" she recalls.
Still, Ms. Lowe says the foundation deliberated mightily before making its move. Some still felt the system was too resistant for any change to happen.
Source of Resistance
One big source of resistance is the dizzying array of federal and state regulations that are mostly geared to protecting residents in large institutions. There are "life safety" rules intended to keep residents safe and prevent them from dying in fires and other disasters; "physical plant" standards that deal with building codes; health-care rules that guarantee a modicum of privacy -- requiring, for example, a curtain between beds. Infection-control regulations are meant to stop transmission of disease, while quality-of-life codes try to ensure residents receive adequate recreation and activities.
As a result, the groups with the know-how and resources to build Green Houses are often nursing-home operators themselves. Some nursing-home executives argue such rules can make it difficult, if not impossible, to create the homelike environment that is a Green House's hallmark. Generally licensed as nursing homes, Green Houses are designed to provide a full range of care to the very sick.
[Chart]
Regulatory Hurdle
Late last year, Lynn Thompson, chief executive of the Mennonite Memorial Home in Bluffton, Ohio, says he wanted to build a couple of Green Houses in a cornfield near a residential neighborhood so seniors could live near families with young children. But because the Green Houses would be a mile away and on a different lot, Mr. Thompson says state regulators dictated they must be licensed as an independent nursing home, which meant they would have to have at least 50 beds -- or build several more Green Houses. Mr. Thompson says it has put his plan at risk. "It has made it more expensive and more difficult," he says.
Rebecca Maust, chief of the Division of Quality Assurance at the Ohio Health Department, says in a statement that the agency "fully supports" person-centered care but that Green Houses have to be on the same lot as the main nursing home to "ensure proper care of residents."
Gerald Betters, who built two Green Houses near his traditional nursing home in Powers, Mich., created a regulatory backlash when he decided residents would help bake cookies. Mr. Betters says he found out residents would have to wear gloves when they help, a rule he feels undermines the effort to make the facility feel like a home.
When contacted by The Wall Street Journal, Catherine Hunter, a licensing officer for the Division of Nursing Home Monitoring in Michigan's Department of Community Health, said that her office had embarked on a "management review" and had found a loophole. The elders need only wash their hands, provided their hands are cut-free, Ms. Hunter said.
Mr. Hamilton of the Centers for Medicare & Medicaid Services says his agency doesn't think existing rules "represent any serious barriers" to the Green House model. He added that he wants to "maintain open lines of communication" to any parties who believe that a regulation is a barrier.
These operators may be the exception. According to Susan Reinhard, who heads the AARP's Public Policy Institute, some nursing-home owners aren't eager to switch horses. "You have owners who have their personal wealth invested in a model that was requested by society way back," she says.
"There are providers who don't want to change because of the capital investment they've made," adds Larry Minnix, CEO of the American Association of Homes and Services for the Aging, which represents not-for-profits. But he says they need to. "Forty years ago, the paradigm was the 'minihospital' and that is what became the modern American nursing home," Mr. Minnix says. "That is not what is needed now." Ms. Feeney of the American Health Care Association says the group is supportive of Green Houses.
Perhaps the most significant hurdle to Green Houses is the perception that they are too expensive. "The biggest criticism I hear is, 'How do you make it work financially?'" says Mr. Minnix, whose association represents not-for-profit nursing homes as well as assisted-living and retirement communities.
Jeffrey Shireman, president of the not-for-profit Lebanon Valley Brethren Home in Palmyra, Pa., says he worked with Pennsylvania's Health Department to build Green Houses at a cost of $1.7 million a piece with open kitchens, comfortable couches and electric fireplaces (real fireplaces are a regulatory obstacle). "If I could afford to, I would abandon the other institutional units and build more Green Houses," says Mr. Shireman, who says his institution floated a bond issue and launched a capital campaign to fund construction of the Green Houses.
Michael Martin, vice president of Riverside Health System, which owns several traditional nursing homes as well as assisted living and other forms of elder care, says he was hoping to build some Green Houses and move 120 patients out of the traditional nursing-home beds his not-for-profit operates in Newport News, Va. He says the company even purchased land in nearby Williamsburg. But after intensive study, Mr. Martin says he concluded that Green Houses simply couldn't work financially.
Green Houses "will absolutely provide a quality of life unsurpassed," Mr. Martin says, but "they don't work financially without subsidy."
Others disagree. Robert Jenkens, who is spearheading the Green House project at NCB Capital for Robert Wood Johnson, says that some not-for-profits and at least one for-profit believe the model to be financially viable. St. John's Lutheran Ministries in Billings, Mont., operates both a nursing home and some Green Houses. In an internal review, officials found that it cost $192 a day to care for a resident in the traditional nursing home versus $150 a day in their Green Houses.
While building costs were high, Vice President David Trost says the Green House model also has cost savings. "We no longer have to take a resident 200 feet to the dining room -- we only have to take them 20 feet, and that is significant," he says.
Robert Wood Johnson executives say financial sustainability is a question they're scrutinizing intently. Based on this "first round" of Green Houses, they believe that it is financially doable, but they are rigorously testing the model and developing software that should help providers determine whether they can handle Green Houses financially.
Dr. Thomas says comparing Green Houses with nursing homes is an "apples-to-oranges comparison." "Green House belongs to the tradition of finding the better product, of building the better mousetrap," he says.
June 24, 2008; Page A1
PRINCETON, N.J. -- In the spring of 2001, Bill Thomas, dressed in his usual sweat shirt and Birkenstock sandals, entered the buttoned-down halls of the Robert Wood Johnson Foundation. His message: Nursing homes need to be taken out of business. "It's time to turn out the lights," he declared.
"Green Houses," smaller, home-like environments for seniors, are a growing alternative to larger, more clinical elder-care facilities. And while the Robert Wood Johnson Foundation is contributing millions to build more, obstacles remain.
Cautious but intrigued, foundation executives handed Dr. Thomas a modest $300,000 grant several months later. Now the country's fourth-largest philanthropy is throwing its considerable weight behind the 48-year-old physician's vision of "Green Houses," an eight-year-old movement to replace large nursing homes with small, homelike facilities for 10 to 12 residents. The foundation is hoping that through its support, Green Houses will soon be erected in all 50 states, up from the 41 Green Houses now in 10 states.
"We want to transform a broken system of care," says Jane Isaacs Lowe, who oversees the foundation's "Vulnerable Populations portfolio." "I don't want to be in a wheelchair in a hallway when I am 85."
The foundation's undertaking represents the most ambitious effort to date to turn a nice idea into a serious challenger to the nation's system of 16,000 nursing homes. To its proponents, Green Houses are nothing less than a revolution that could overthrow what they see as the rigid, impersonal, at times degrading life the elderly can experience at large institutions.
Susan Feeney, a spokesperson for the American Health Care Association, which represents thousands of for-profit and not-for-profit nursing homes, says the criticisms levied against the industry by Dr. Thomas and his supporters are "overly harsh." She says many nursing homes are embracing cultural changes to create a more homelike feel. "While it may not be scrapping a large building...we are changing," she says.
Green Houses face a host of hurdles. Many Green House builders say they've encountered a thicket of elder-care regulations. It takes enormous capital to build new homes from scratch. Plus, experts say the concept faces stiff resistance from many parts of the existing nursing-home system. Traditional nursing homes, many of which care for 100 to 200 patients, are predicated on economies of scale -- the larger the home, the cheaper it is to care for each individual resident.
Foundation officials acknowledge they don't know whether Green Houses are a viable economic model. But they've decided not to wait for an answer. Hewing to its recent strategy of making "big bets" on ideas to change social norms, Robert Wood Johnson is investing $15 million over five years -- one of the bigger grants the institution has handed out to a single entity.
The foundation, which has $10 billion in assets, is trying to encourage the building of Green Houses and is directing the cash to NCB Capital Impact, a Washington, D.C.-based not-for-profit that has been offering consulting, education, architectural and other help to any party interested in operating a Green House. The foundation is also studying the viability of Green Houses and says more support could follow.
"Robert Wood Johnson is making an important investment to try to make sure there is a sufficient cadre of early adopters of the Green House model -- and research to make sure the model is actually working," says Thomas Hamilton, who oversees nursing-home quality and regulatory issues for the Centers for Medicare & Medicaid Services. He says his agency is trying to coax nursing homes into changing their cultures and adopting more humane, "patient-centered" models such as the Green House.
The $122 billion nursing-home industry arose from the 1965 birth of Medicare and Medicaid, the government health-insurance programs for the elderly and poor that provide billions in government reimbursements. Made up of both not-for-profit and for-profit companies, the industry still generates most of its revenue from Medicaid and Medicare.
Now, many nursing homes are aging, and the industry has suffered through so many scandals involving patient care that many elderly shun the thought of entering such institutions. A 2003 survey by the AARP, an advocacy group for older Americans, found that just 1% of Americans over 50 with a disability wanted to move to a nursing home.
In recent years there have been attempts to create more popular alternatives, with mixed results. Assisted living, an ambitious effort begun in the 1980s to allow seniors to live independently in apartments and other group settings, has proved very popular but it "serves the needs of people who are relatively wealthy and relatively healthy," Dr. Thomas says. (Ms. Feeney of the American Health Care Association says the number of poor Medicaid elderly in assisted living is small but will grow.)
Avoided Issue
While Robert Wood Johnson has historically taken a substantial interest in issues affecting the elderly, for years it avoided funding nursing homes or even nursing-home reform. "Bluntly, trying to make change in a system that was uninterested in change didn't seem like a good investment," says Ms. Lowe.
Ms. Lowe and her foundation colleagues began to shift that stance after their meeting with Dr. Thomas. A native of upstate New York, Dr. Thomas headed to Massachusetts to get his degree at Harvard Medical School, then returned to work as a doctor in a local nursing home. He says he was troubled by the experience. "I was distressed by the amount of emotional suffering that people were encountering even when they had good medical care," he says.
Dr. Thomas spent years plumbing the issue, even penning a one-man play about a mythical land where elders were the heart of society. Further inspired by his two young daughters, both severely disabled and cared for at home, Dr. Thomas decided that changing nursing homes from within wouldn't be enough, and sat down "with a clean piece of paper" to re-imagine elder care.
Tall, sporting a beard and a mane of long, curly brown hair, Dr. Thomas showed up at Robert Wood Johnson's bucolic campus in 2001 attired in his usual casual garb -- he says he wasn't about to change his ways and decided he was "going there to rattle the cages." "This is a formal place," Ms. Lowe says. "In this organization, when someone comes in Birkenstocks and jeans and a hoodie you think, 'This must be the electrician.'"
But it was Dr. Thomas's electric delivery -- officials liken him to an evangelist -- that got the group's attention. "Our energy needs to be around how to replace nursing homes. Not replace the building but replace the idea that older people can be taken away and put into an institution," Dr. Thomas recalls saying. He described his vision of homelike places where elderly residents could gather, dine together and sit before a blazing fire.
Though she was taken aback by Dr. Thomas's attire, Ms. Lowe says she grew fascinated by his idea of a place where seniors could flourish and grow, yet still receive the same high level of skilled nursing care that nursing homes offer.
In 2003, Ms. Lowe traveled to Tupelo, Miss., where the first Green House had just opened, and says she marveled at how different it was from a well-regarded nursing home she'd previously visited. "Instead of thinking, 'I don't want to be here,' it was, 'How can I move in?'" she recalls.
Still, Ms. Lowe says the foundation deliberated mightily before making its move. Some still felt the system was too resistant for any change to happen.
Source of Resistance
One big source of resistance is the dizzying array of federal and state regulations that are mostly geared to protecting residents in large institutions. There are "life safety" rules intended to keep residents safe and prevent them from dying in fires and other disasters; "physical plant" standards that deal with building codes; health-care rules that guarantee a modicum of privacy -- requiring, for example, a curtain between beds. Infection-control regulations are meant to stop transmission of disease, while quality-of-life codes try to ensure residents receive adequate recreation and activities.
As a result, the groups with the know-how and resources to build Green Houses are often nursing-home operators themselves. Some nursing-home executives argue such rules can make it difficult, if not impossible, to create the homelike environment that is a Green House's hallmark. Generally licensed as nursing homes, Green Houses are designed to provide a full range of care to the very sick.
[Chart]
Regulatory Hurdle
Late last year, Lynn Thompson, chief executive of the Mennonite Memorial Home in Bluffton, Ohio, says he wanted to build a couple of Green Houses in a cornfield near a residential neighborhood so seniors could live near families with young children. But because the Green Houses would be a mile away and on a different lot, Mr. Thompson says state regulators dictated they must be licensed as an independent nursing home, which meant they would have to have at least 50 beds -- or build several more Green Houses. Mr. Thompson says it has put his plan at risk. "It has made it more expensive and more difficult," he says.
Rebecca Maust, chief of the Division of Quality Assurance at the Ohio Health Department, says in a statement that the agency "fully supports" person-centered care but that Green Houses have to be on the same lot as the main nursing home to "ensure proper care of residents."
Gerald Betters, who built two Green Houses near his traditional nursing home in Powers, Mich., created a regulatory backlash when he decided residents would help bake cookies. Mr. Betters says he found out residents would have to wear gloves when they help, a rule he feels undermines the effort to make the facility feel like a home.
When contacted by The Wall Street Journal, Catherine Hunter, a licensing officer for the Division of Nursing Home Monitoring in Michigan's Department of Community Health, said that her office had embarked on a "management review" and had found a loophole. The elders need only wash their hands, provided their hands are cut-free, Ms. Hunter said.
Mr. Hamilton of the Centers for Medicare & Medicaid Services says his agency doesn't think existing rules "represent any serious barriers" to the Green House model. He added that he wants to "maintain open lines of communication" to any parties who believe that a regulation is a barrier.
These operators may be the exception. According to Susan Reinhard, who heads the AARP's Public Policy Institute, some nursing-home owners aren't eager to switch horses. "You have owners who have their personal wealth invested in a model that was requested by society way back," she says.
"There are providers who don't want to change because of the capital investment they've made," adds Larry Minnix, CEO of the American Association of Homes and Services for the Aging, which represents not-for-profits. But he says they need to. "Forty years ago, the paradigm was the 'minihospital' and that is what became the modern American nursing home," Mr. Minnix says. "That is not what is needed now." Ms. Feeney of the American Health Care Association says the group is supportive of Green Houses.
Perhaps the most significant hurdle to Green Houses is the perception that they are too expensive. "The biggest criticism I hear is, 'How do you make it work financially?'" says Mr. Minnix, whose association represents not-for-profit nursing homes as well as assisted-living and retirement communities.
Jeffrey Shireman, president of the not-for-profit Lebanon Valley Brethren Home in Palmyra, Pa., says he worked with Pennsylvania's Health Department to build Green Houses at a cost of $1.7 million a piece with open kitchens, comfortable couches and electric fireplaces (real fireplaces are a regulatory obstacle). "If I could afford to, I would abandon the other institutional units and build more Green Houses," says Mr. Shireman, who says his institution floated a bond issue and launched a capital campaign to fund construction of the Green Houses.
Michael Martin, vice president of Riverside Health System, which owns several traditional nursing homes as well as assisted living and other forms of elder care, says he was hoping to build some Green Houses and move 120 patients out of the traditional nursing-home beds his not-for-profit operates in Newport News, Va. He says the company even purchased land in nearby Williamsburg. But after intensive study, Mr. Martin says he concluded that Green Houses simply couldn't work financially.
Green Houses "will absolutely provide a quality of life unsurpassed," Mr. Martin says, but "they don't work financially without subsidy."
Others disagree. Robert Jenkens, who is spearheading the Green House project at NCB Capital for Robert Wood Johnson, says that some not-for-profits and at least one for-profit believe the model to be financially viable. St. John's Lutheran Ministries in Billings, Mont., operates both a nursing home and some Green Houses. In an internal review, officials found that it cost $192 a day to care for a resident in the traditional nursing home versus $150 a day in their Green Houses.
While building costs were high, Vice President David Trost says the Green House model also has cost savings. "We no longer have to take a resident 200 feet to the dining room -- we only have to take them 20 feet, and that is significant," he says.
Robert Wood Johnson executives say financial sustainability is a question they're scrutinizing intently. Based on this "first round" of Green Houses, they believe that it is financially doable, but they are rigorously testing the model and developing software that should help providers determine whether they can handle Green Houses financially.
Dr. Thomas says comparing Green Houses with nursing homes is an "apples-to-oranges comparison." "Green House belongs to the tradition of finding the better product, of building the better mousetrap," he says.
Monday, June 23, 2008
Scientists find childbirth wonder drug that can 'cure' shyness
It can turn anything from job interviews to the most routine of family gatherings into a sweat-inducing ordeal.
But a 'love drug' produced naturally by the body during sex and childbirth could offer hope to the millions of people blighted by shyness, scientists have said.
Investigators believe oxytocin - a natural hormone that assists childbirth and helps mothers bond with newborn babies - could become a wonder drug for overcoming shyness.
Shy girl with hand over face
Scientists found the drug could help shyness
Trials have found that oxytocin can reduce anxiety and ease phobias. Researchers say the hormone offers a possible, safe, alternative to alcohol as a means of overcoming the problem.
Sixty per cent of Britons say they have suffered from shyness and one in 10 say it impedes their daily life.
Researchers in the US, Europe and Australia are now racing to develop commercial forms of the hormone, including a nasal spray.
They believe it could also be turned into a 'wonder drug' to treat a range of personality disorders such as autism, depression and anxiety.
Paul Zak, a professor of neuroscience at California’s Claremont Graduate University said: 'Tests have shown that oxytocin reduces anxiety levels in users. It is a hormone that facilitates social contact between people.
What’s more, it is a very safe product that does not have any side effects and is not addictive.'
Professor Zak has tested the hormone on hundreds of patients. Its main effect is to curb the instincts of wariness and suspicion that cause anxiety.
The hormone is said to help mothers bond with their babies
Produced naturally in the brain during social interactions, it promotes romantic feelings, helps mothers bond with babies and makes people more sociable.
Oxytocin is released during orgasm and is also the key birthing hormone that enables the cervix to open and the contractions to work. Where labour has to be induced, it is often given to the mother intravenously to kick-start contractions.
Professor Zak said: 'We've seen that it makes you care about the other person. It also increases your generosity towards that person. That's why (the hormone) facilitates social interaction.'
In other recent trials, researchers at Zurich University in Switzerland have managed to ease symptoms of extreme shyness in 120 patients by giving them the hormone treatment half an hour before they encountered an awkward situation.
Oxytocin spray has also been successfully trialled at the University of New South Wales.
Autistic patients given oxytocin as part of a study in New York found their ability to recognise emotions such as happiness or anger in a person's tone of voice - something which usually proved difficult - also improved.
Experiments by Dr Eric Hollander at the city's Mount Sinai School of Medicine found a single intravenous infusion of the chemical triggered improvements that lasted for two weeks.
Previous research has revealed autistic children have lower than usual levels of oxytocin in their blood.
Professor Zak said: 'Oxytocin does not cure autism, but it does reduce the symptoms.'
Studies on rats at Emory University in Atlanta also suggested the hormone made the rodents more faithful to their partners.
The potential uses of oxytocin offer commercial possibilities well beyond individual patients too. Restaurants, for instance, could spray a thin mist over customers to put them at ease.
It could be used as a benign form of tear gas, quelling any violent feelings among groups of demonstrators, or, building on the Atlanta research, even to prevent extramarital affairs.
Previous research into the hormone by Professor Zak suggested that generous people had higher than average levels of oxytocin in the brain, while mean-spirited people have lower than normal levels.
Researchers gave doses of oxytocin and a placebo to participants, who were then asked to decide how to split a sum of cash with a stranger. Those given oxytocin offered 80 per cent more money than those given a placebo.
However, despite the many potential benefits of the research projects, some scientists have sounded warnings over the negative potential uses the hormone offers.
They say oxytocin could have potential as a date-rape drug as it is involved in both trust and sexual arousal.
But a 'love drug' produced naturally by the body during sex and childbirth could offer hope to the millions of people blighted by shyness, scientists have said.
Investigators believe oxytocin - a natural hormone that assists childbirth and helps mothers bond with newborn babies - could become a wonder drug for overcoming shyness.
Shy girl with hand over face
Scientists found the drug could help shyness
Trials have found that oxytocin can reduce anxiety and ease phobias. Researchers say the hormone offers a possible, safe, alternative to alcohol as a means of overcoming the problem.
Sixty per cent of Britons say they have suffered from shyness and one in 10 say it impedes their daily life.
Researchers in the US, Europe and Australia are now racing to develop commercial forms of the hormone, including a nasal spray.
They believe it could also be turned into a 'wonder drug' to treat a range of personality disorders such as autism, depression and anxiety.
Paul Zak, a professor of neuroscience at California’s Claremont Graduate University said: 'Tests have shown that oxytocin reduces anxiety levels in users. It is a hormone that facilitates social contact between people.
What’s more, it is a very safe product that does not have any side effects and is not addictive.'
Professor Zak has tested the hormone on hundreds of patients. Its main effect is to curb the instincts of wariness and suspicion that cause anxiety.
The hormone is said to help mothers bond with their babies
Produced naturally in the brain during social interactions, it promotes romantic feelings, helps mothers bond with babies and makes people more sociable.
Oxytocin is released during orgasm and is also the key birthing hormone that enables the cervix to open and the contractions to work. Where labour has to be induced, it is often given to the mother intravenously to kick-start contractions.
Professor Zak said: 'We've seen that it makes you care about the other person. It also increases your generosity towards that person. That's why (the hormone) facilitates social interaction.'
In other recent trials, researchers at Zurich University in Switzerland have managed to ease symptoms of extreme shyness in 120 patients by giving them the hormone treatment half an hour before they encountered an awkward situation.
Oxytocin spray has also been successfully trialled at the University of New South Wales.
Autistic patients given oxytocin as part of a study in New York found their ability to recognise emotions such as happiness or anger in a person's tone of voice - something which usually proved difficult - also improved.
Experiments by Dr Eric Hollander at the city's Mount Sinai School of Medicine found a single intravenous infusion of the chemical triggered improvements that lasted for two weeks.
Previous research has revealed autistic children have lower than usual levels of oxytocin in their blood.
Professor Zak said: 'Oxytocin does not cure autism, but it does reduce the symptoms.'
Studies on rats at Emory University in Atlanta also suggested the hormone made the rodents more faithful to their partners.
The potential uses of oxytocin offer commercial possibilities well beyond individual patients too. Restaurants, for instance, could spray a thin mist over customers to put them at ease.
It could be used as a benign form of tear gas, quelling any violent feelings among groups of demonstrators, or, building on the Atlanta research, even to prevent extramarital affairs.
Previous research into the hormone by Professor Zak suggested that generous people had higher than average levels of oxytocin in the brain, while mean-spirited people have lower than normal levels.
Researchers gave doses of oxytocin and a placebo to participants, who were then asked to decide how to split a sum of cash with a stranger. Those given oxytocin offered 80 per cent more money than those given a placebo.
However, despite the many potential benefits of the research projects, some scientists have sounded warnings over the negative potential uses the hormone offers.
They say oxytocin could have potential as a date-rape drug as it is involved in both trust and sexual arousal.
The LifeStraw looks simple. But it has the potential to save many lives.
Mikkel Vestergaard Frandsen didn't set out to help millions of people get access to safe drinking water. At the age of 19, he dropped out of school and moved to Nigeria to sell trucks.
But when a political coup forced him to leave Africa and return to his native Denmark in 1992, he reluctantly agreed to join the family textile business -- if he could focus on relief-aid products.His experience in Africa and later working with the Carter Center in Atlanta, a human-rights organization founded by former President Jimmy Carter and his wife, Rosalynn, convinced him that people in developing countries needed a simple, durable device to purify water.
The result was the LifeStraw, a personal, portable water purifier that eliminates virtually all waterborne bacteria and most viruses responsible for causing diarrheal diseases. The product, which costs as little as $3, has won a number of awards, including the 2008 Saatchi & Saatchi Award for World Changing Ideas.
"The LifeStraw empowers people so they don't have to wait for the government to come up with solutions," says Mr. Frandsen, who is now 36 and president and chief executive officer of the family's Lausanne, Switzerland-based company, Vestergaard Frandsen, which manufactures the LifeStraw.
The light blue straw with a resilient polystyrene shell looks like a child's musical recorder. When someone sucks through the straw, the water flows through textile and iodine filters, which kill off viruses and bacteria such as E. coli.
The company says nongovernmental organizations and nonprofit agencies already have bought hundreds of thousands of the drinking tubes and are distributing them in countries with unsafe drinking water.
Aid groups also are buying them for communities devastated by natural disasters. Demand has been so high for LifeStraws in Myanmar, which was ravaged by a cyclone last month, and China, which was hit with an earthquake, that the two plants that manufacture the device are working around the clock to produce more, Vestergaard Frandsen says.
The U.S. government, faith-based organizations and nonprofit groups such as Convoy of Hope have sent 21,000 of the straws to Myanmar so far, and photos coming out of the country indicate they are reaching at least some of the people who need them, a company spokesman says. Vestergaard Frandsen eventually expects to provide 50,000 straws to both Myanmar and China, he says.
Jeff Nene, a spokesman for Convoy of Hope, says people in dire situations make the mistake of drinking dirty water, not realizing the impurities can cause diarrhea, dysentery and eventually death. "You can go for a long time without food," he says. "But you can't live long without water."
Planting the Seed
Founded in 1957 as a maker of fabric for work clothing, Vestergaard Frandsen shifted into relief-aid products such as blankets and tents in 1992, the year Mr. Frandsen joined the company. It eventually began making disease-control textiles such as the now widely distributed PermaNet, an insecticide-treated mosquito bed net that costs as little as $4 and doesn't need to be re-treated for three to four years.
It was while working in the mid-1990s on a project with the Carter Center to eradicate Guinea worm -- a parasite that enters the body through contaminated drinking water and eventually emerges through a very painful blister in the skin -- that Mr. Frandsen's interest in water-purification systems began. Vestergaard Frandsen provided materials for a drinking-pipe filter aimed at preventing people from swallowing the Guinea worm's larvae and suffering the misery of infection. After millions of the pipes were distributed, the number of Guinea worm cases plummeted to fewer than 10,000 world-wide in 2007 from 3.6 million in 1986, according to the Carter Center.
Mr. Frandsen says the fact that a disease that caused so much suffering could be prevented so easily got him thinking about other waterborne illnesses in the developing world. He rattles off the numbers: More than a billion people are without access to safe drinking water. Diarrhea kills more than 1.8 million people a year, and chronic diarrhea is the leading killer of people with AIDS.
"We started thinking, with 6,000 children dying a day from waterborne diseases, what could we do?" said Mr. Frandsen on a recent visit to the U.S.
He wanted to create a filter that could be used at the water source to reduce these diseases. It had to be easy to carry, and require no electricity, batteries or repairs.
Mr. Frandsen's father, Torben Vestergaard Frandsen, was involved in the early work on the design of the LifeStraw. When it was determined that the Guinea-worm pipe filter removed 96% to 97% of all cholera bacteria, the company thought developing a product to prevent cholera would be a "piece of cake," he says.
It wasn't. The 3% to 4% of the cholera bacteria that made it through the Guinea-worm pipe filter was too much to call drinking water safe. "That was when we embarked on a long line of development to make the product useful against a wide variety of waterborne viruses and bacteria," the elder Mr. Frandsen says in an email.
The company initially tried creating filters only from textiles, he says. But when it found they weren't entirely effective, it began experimenting with other substances, including iodine and carbon.
As far as the colors -- they weren't chosen by any designers or focus groups.
"I always loved turquoise and navy," says Torben Vestergaard Frandsen. "After all these years I managed to have a product in my favorite colors. Luckily, the color combination is not that bad for water."The LifeStraw, introduced in 2005, is 10 inches long and weighs about 4.3 ounces. When someone sucks through the straw, the water flows through textile and iodine filters, which kill off bacteria and viruses. A second chamber consists of granulated active carbon that absorbs residual iodine, thereby improving the taste of the water.
The Real Test
The straw was tested at the University of North Carolina and tweaked by the company's engineers to decrease clogging and make it easier to clean, says Mark D. Sobsey, the professor who conducted the study.
One straw is capable of purifying at least 700 liters (182 gallons) of water, removing an estimated 99.9% of bacteria and 99% of waterborne viruses, which, while not perfect, is enough to significantly reduce the risk of infection and illness, according to Prof. Sobsey. The straw doesn't completely remove turbidity from water or make saline water potable. It also doesn't remove or filter heavy metals.
While LifeStraw's ability to filter out waterborne bacteria and viruses has been demonstrated in the lab, its effectiveness at reducing diarrheal illnesses in the field -- which depends on things such as whether people use the device consistently and correctly -- is still being measured. Thomas F. Clasen, a lecturer in the department of infectious and tropical disease at the London School of Hygiene and Tropical Medicine, expects to complete a study of the device among users in Ethiopia in the next several months. He declined to release details on data collected so far.
If the LifeStraw reduces diarrhea even 10% to 15%, it would be considered "an effective device," Prof. Sobsey says. If the reduction is 25% to 50%, then "we can declare it a victory," he says.
This year, Vestergaard Frandsen introduced the LifeStraw Family, a $15 water purifier that families can use at home. Families pour water into the purifier, which kills off parasites in addition to viruses and bacteria that cause diarrhea. It is designed to last long enough to provide about two years of clean drinking water for a family of six.
Although Vestergaard Frandsen, which is closely held, declines to provide sales figures for the LifeStraw or the LifeStraw Family, it does say that all of its products "are selling very robustly, and we have significant growth every year."
"There is no conflict between doing good and doing business," the younger Mr. Frandsen says.
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