Judy Foreman

Nationally Sindicated Fitness, Health, and Medicine Columnist

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Your Health History – Up For Grabs?

July 20, 1998 by Judy Foreman

Today, the federal government is taking the first steps toward a national system that would give each of us a single number or “identifier” linked to every medical record ever kept on us. It’s a prospect that privacy advocates fear may destroy what little confidentiality remains in the era of computerized medical records.

Granted, so many people can already legally view your medical file – not just doctors or nurses but insurers, self-insured employers and even law enforcement officials under some conditions – that some nihilists figure things can’t get worse.

“Big brother has already found you. He knows where you live. He knows you go to a psychiatrist. He studies your drug behavior,” says Arthur Caplan, director of the center for bioethics at the University of Pennsylvania.

Because most medical care is paid for by third party insurers, he says, when it comes to real safeguards of privacy, “I don’t think we have any way. . . We are not at T-minus 30 seconds and holding. We are trying to grab a missile that has cleared the atmosphere and bring it back.”

But others concerned about medical privacy say things could get worse if the Department of Health and Human Services, as required by the 1996 Kennedy-Kassebaum law on health insurance portability, goes ahead with regulations on what’s become known as the “unique health identifier.” HHS says it will only proceed if there is “sufficient national consensus.”

The identifier, the subject of hearings by an HHS advisory panel that begin today in Chicago, could be a number, perhaps your Social Security number or an “enhanced” version of it, according to a white paper that the agency recently posted on the Web.

Although many health plans already use Social Security numbers to track patients, some let you pick a less-traceable number instead. But having a single, mandatory “womb to tomb” number could make it even easier for claims information and pharmacy data to be linked to other data bases – like tax records, voter registrations, motor vehicle data and credit card records, privacy advocates fear.

If your employer is self-insured, for example, the only health care information it can see is its own records. If there were a health identifer, the employer could access your entire medical history, privacy advocates say.

The unique health identifier, the HHS white paper notes, need not be a number at all. It could be a sample of your DNA, which horrifies advocates like Wendy McGoodwin at the Cambridge-based Council for Responsible Genetics. Or it could be some other unique “biometric marker” like a fingerprint, distinctive patterns on the retina or iris in the eye, or a voice pattern.

To some, streamlining the electronic processing of medical records is an overdue cost-saving reform.

In October, the Sequoia Software Corporation in Columbia, Md., won a multi-million dollar grant from the US Commerce Department to develop a national “Master Patient Index.” The goal, the company said, is to develop a “massively distributed medical records system across a national computer backbone.”

As of now, the company lamented, the electronic flow of information from patient records is hampered because “there has been no common indexing to correlate and cross-reference patient identifiers such as name, birthday and Social Security number.” The state of affairs that the company bemoans is one that grateful privacy advocates dub “security through obscurity.”

Kathleen Frawley, vice president for legislative and public policy services for the American Health Information Management Association, a Chicago-based group, says the horse is already out of the barn:

“Right now, there are 1,500 different claim forms used by insurers that require hospitals and doctors to process information differently. . . We are already in a privacy crisis. This doesn’t make it worse.

“People don’t realize their health information is already going out the door,” she adds. At least, she notes, the 1996 law that calls for a health identifier also says that Congress must enact privacy legislation by August, 1999, and that if it doesn’t, HHS must issue privacy regulations.

Advocates for some sort of health identifier system aren’t backing down. Because people now typically have than half a dozen health plans over a lifetime and see many doctors, there is a need for “different enterprises and consumers to be able to track medical history over time,” argues Elliot Stone, executive director of the Waltham-based Massachusetts Health Data Consortium, a private, nonprofit group that builds large data health care bases.

Though Stone does “not necessarily” favor a single identifer, he believes it’s possible to “blend confidentiality policy with technology.”

And there are potential benefits – at least to society at large – of making it easier to access private medical data. These include better tracking of diseases, quicker detection of fraudulent billing and better medical care if, say, you’re insured in Massachusetts and wind up in an emergency room in California.

At Brigham and Women’s Hospital, having computers analyze patient records and doctors’ orders has produced “an order of magnitude decrease in medication errors” by alerting doctors to potential drug interactions or allergic responses, says John Glaser, vice president and chief information officer at Partners HealthCare System, Inc., of which the Brigham is a part.

Even so, says Glaser, a health identifer “would be a mistake. Medical data already leaks all over kingdom come. The risk of an identifier outweighs any benefits.”

Many others agree.

Last year, a National Research Council panel concluded that while there are ways to make electronic records more secure than paper records – like “audit trails” listing everyone who accesses a record – the benefits of a health identifier must be weighed “against the potential risks to privacy.”

Peter Szolovits, a member of that panel and a professor of computer science at MIT, puts it this way: “Now, your only confidentiality comes from the fact that most people don’t want to take the trouble to find out stuff about you.

“Adopting a single, universal health identifier will make things worse because it will make it that much easier and cheaper to link up records. Encryption techniques could make it possible to let me, as a patient, control whether my medical records at MIT can be linked with my insurance records. But my fear is this is not what would be adopted as a health identifier.”

It might make sense to have national health identifier if we had a national health care system to go with it, says George Annas, professor of health law at the Boston University School of Public Health.

But “getting rid of the national health care system and keeping the identifer is crazy,” he says. “Very large HMOs, etc. like it because they can track their members. It’s more efficient. I’m sure public health people like it, too, and researchers love it.

“But anyone interested in privacy and confidentiality should be horrified. The average person gets nothing out of this.”

“It’s incredibly scary,” agrees A.G. Breitenstein, director of the Justice Resource Health Law Institute in Boston, who adds that law enforcement officials are already pressing for “total, open access” to medical records. “Right now, law enforcement personnel have to physically present a warrant or subpoena to each holder of your records. With the unique health identifier and the linkage of computerized data systems, almost anyone, including law enforcement personnel, pharmaceutical companies, biotech companies, employers can link into the whole system at the touch of a keystroke without your knowledge or consent.”

“Well-meaning intentions often have very unfortunate consequences, and that is likely to happen with a permanent individual health identifier number,” adds Richard Sobel, a fellow at the Berkman Center for the Internet and Society at Harvard Law School.

One solution would be to repeal the part of the Kennedy-Kassebaum law, also known as the Health Insurance Portability and Accountability Act of 1996, that calls for the identifier, says Dr. Denise Nagel, a Lexington psychiatrist and head of the National Coalition for Patient Rights.

In fact, the HHS advisory panel whose hearings begin today (called the National Committee on Vital and Health Statistics) has already recommended that HHS not adopt a health identifier until after privacy legislation is enacted.

Currently, there are half a dozen bills dealing specifically with medical privacy in Congress, as well as others addressing patients’ rights in managed care organizations.

But privacy advocates fear that, despite slogans touting “patients’ rights,” some bills may undermine confidentiality by allowing too easy access to

“We’re at a crossroads,” says Nagel. The HMO industry wants “Congress to allow them to control and use our personal medical information without our consent. They’ll win if we don’t speak up.”

 

 To learn more

 To read the HHS “White Paper” on the unique health identifier, go to this web site:

http://aspe.os.dhhs.gov/admnsimp/nprm/noiwp1.htm

To listen live to the hearings the National Committee on Vital and Health Statistics, go to:

http://aspe.os.dhhs.gov/ncvhs

For more information on privacy concerns, go to:

http://cyber.law.harvard.edu/spaces.html

www.nationalcpr.org (This web site, run by the National Coalition for Patient Rights, will be on line by July 27.)

www.epic.org (The Electronic Privacy Information Center)

For other information, go to:

http://www.ahima.org

http://www.sequoiasw.com

Stretching your fitness routine

July 13, 1998 by Judy Foreman

Twenty years ago, the gurus at the American College of Sports Medicine told us to get off our duffs and get those lungs and hearts pumping. Eight years ago, they told us to pump iron, too.

Now, they’ve added a third cornerstone to their fitness guidelines — get flexible.

Don’t groan; it’s long overdue. And while stretching is an addition to, not a substitute for, the aerobic exercise and weight lifting we should already be doing for health and fitness, it’s arguably the easiest and most enjoyable exercise of the lot.

And if it’s just looser limbs or a better golf swing you’re after — as opposed to yoga-like inner peace — you can even do your stretches while doing something else, like watching TV.

In case you haven’t noticed, one of the less pleasant features of aging is that creakiness called decreased range of motion. If you can’t move your limbs, head, and trunk through a full range of motion, exercise physiologists say, you’re setting yourself up for orthopedic problems, including low back pain and injury.

It’s also just plain demoralizing if your shoulders get so tight that brushing your hair becomes an Olympic event or your hamstrings become so taut the mere words “bend over and touch your toes” send you back to the couch for another decade.

The solution, the sports medicine folks declared several weeks ago, is flexibility training.

For the record, there are no clinical studies proving the benefits of flexibility training. In fact, compared to the data on aerobic exercise and strength training, the data on flexibility is scant, says William Evans, director of the nutrition metabolism and exercise program at the University of Arkansas Medical School.

But studies are piling up fast enough to justify adding flexibility training to the standard fitness regimen, says Glenn A. Gaesser, an exercise physiologist at the University of Virginia and a co-author of the new guidelines.

For one thing, it’s clear that connective tissue benefits from stretching — or at least suffers from lack of it. In women who wear high heeled shoes, tendons, ligaments — and muscles — become so shortened that walking uphill may produce cramps or injuries to calf muscles.

For another, it’s been demonstrated many times in animals that stretching a muscle triggers growth factors that increase the number of tiny, contractile protein filaments inside each muscle cell.

These actin and myosin filaments slide over each other or pull apart, grabbing on to (“cross-linking”) each other at intervals. This lets the muscle cell contract or extent with controlled ratcheting action.

Muscle cells also have mechanisms called spindle receptors that sense where the muscle is in space and how much tension — or muscle tone — it has. When you stretch a muscle suddenly, or too far, these receptors send out an alarm, telling the muscle to contract immediately to protect itself against injury.

But if you stretch carefully, you can train these receptors to pause before firing, allowing the muscle to get longer — grow — without reflexively tightening.

Muscle physiologists have identified three kinds of stretches: static, ballistic, and PNF, or proprioceptive neuromuscular facilitation.

Ballistic stretches, in which you bob or bounce while trying to do something like touch your toes, are not widely recommended because they can cause muscle injury.

But static stretches are safe. It’s a static stretch if you sit on the floor with your legs extended and slowly try to touch your toes, holding the stretch 10 to 30 seconds.

PNF stretches are also safe, but are more complicated and often require a partner. For instance, as you sit on the floor with your legs extended, your partner pushes on your back while you push against him, contracting your muscles for about six seconds. Then you do a static forward stretch for 10 to 30 seconds.

The idea is that by contracting your muscles first, you re-set the firing threshold of the stretch receptors in muscle fibers so that it takes more stretch to make them fire.

Not all exercise physiologists use PNF stretches in their practice, in part because they believe static stretches are almost as effective.

Some gurus swear by yoga as the best approach to stretching, and yoga is “an excellent way to develop flexibility,” says James Graves, chairman of the exercise science department at Syracuse University.

But it’s not the only approach, and a simple 20-minute routine that stretches major muscle groups two to three days a week also works fine. It’s also best to stretch after your muscles are already warmed up.

If you want to try yoga, shop around for a teacher you like, advises Betsey Downing, a sports psychologist who runs the Health Advantage Yoga and Personal Development Center in Herndon, Va.

A good teacher, she says, is one who knows anatomy and can offer precautions and alternative stretches if you have an injury or problem doing a particular move.

There’s no universally-accepted certification program for yoga teachers, so it makes more sense to ask a teacher about his or her experience and approach — there are dozens of varieties of yoga — than about credentials per se.

And beware of teachers, and stretches, that cause pain. It’s fine to feel that your muscles are working. But sharp pain — particularly in the joints or at the points where the muscle attaches into the bone — is a sign of injury, not progress.

SIDEBAR:

What it takes to be fit:

When the federal government issued its 1995 exercise guidelines, it had the modest goal of lowering people’s risk for chronic conditions like hypertension and diabetes. The American College of Sports Medicine guidelines have a more ambitious goal: fitness.

The feds call for accumulating at least 30 minutes of moderate activity on most days. This means you can add up a 10-minute walk, 10 minutes of gardening, 10 minutes of chasing the kids around the playground.

The sports medicine guidelines are tougher — aerobic workouts of less than 20 minutes don’t even count.

And while the feds focus on mild aerobic exercise, the sports medicine group recommends aerobics plus strength training and, as of a few weeks ago, flexibility training as well. You can do the minimum level of all three in roughly three hours a week.

For overall fitness, here’s what they recommend:

  • Aerobic, or cardiovascular conditioning.
    • Frequency — 3 to 5 workouts a week. Fewer than three won’t be enough, more than five will add little.
    • Intensity. The goal is to work fairly hard, at 55 to 90 percent of your maximum heart rate. To estimate this, subtract your age from 220. If you’re 50, this yields 170. If you want to work out at 75 percent of your max, multiple 170 by 75 percent, which gives 128 beats per minute.
    • Duration. Workouts should last 20 to 60 minutes.

    If you must cut corners on aerobics, sacrifice duration first; for example, chopping a 40 minute workout to 30. If you have to cut more corners, sacrifice frequency; drop from five days a week to three or four. Don’t sacrifice intensity.

  • Strength training, or using weights or machines to build muscle mass, two to three days a week. In each session, work each muscle group eight to 10 times.
  • For instance, to work the quadriceps, the big muscles in the front of the thigh, do knee extensions (sit in a chair and lift the foot against resistance, either a weight or a machine).

    Other major muscle groups to work include the hamstrings, abdominals (that means bent-leg sit ups), chest presses (push ups or bench presses) and rowing-type exercise in which you use the upper body to pull weight toward you.

    You also need to work the back muscles, either pushing up against a machine or lying on your belly, hooking your feet under the bed, and arching up so your chest is off the floor.

    For arms, try biceps curls and triceps manoevers (hold a weight in your hand with your arm straight up over your head; bend your elbow so your hand brushes your shoulder; then extend it up.)

  • Flexibility training, or stretching the major muscles groups at least four times, two or three days a week.
  • Studies question tamoxifen data

    July 11, 1998 by Judy Foreman

    Two European studies published yesterday cast doubt on the idea that the drug tamoxifen prevents breast cancer, as American researchers found in April.

    But a number of cancer specialists said yesterday that there is still reason to believe the American findings are solid and that women at high risk of breast cancer who take tamoxifen to lower their risk should not stop doing so on the basis of the new studies, nor should women at lower risk start. Tamoxifen can raise the risk of uterine cancer and cause potentially dangerous blood clots.

    The American study – which was about twice as big as the other two studies combined – followed women for four years on average. An Italian study followed women for almost four years, and a British study for almost six years.

    After an analysis of all three studies, the American findings “seem robust,” wrote Dr. Kathleen I. Pritchard, head of clinical trials and epidemiology at the University of Toronto, in a commentary published with the new findings in the current issue of the British journal Lancet.

    But the failure of the European studies to confirm the American findings does cast doubt “on the wisdom of the rush, at least in some places, to prescribe tamoxifen widely for prevention,” she noted.

    In April, a team of American researchers led by Dr. Bernard Fisher of Pittsburgh, head of the Breast Cancer Prevention Trial, stopped its study of more than 13,000 women at high risk of breast cancer early because it became obvious that tamoxifen was linked with a 45 percent reduction in new cancer cases.

    The chance of a finding this dramatic being a statistical fluke is less than 1 in 10,000, the National Cancer Institute noted.

    But even the American study leaves in doubt one key question, said Dr. Irene Kuter, a medical oncologist at Massachusetts General Hospital.

    “We know that in women taking tamoxifen for a few years there is a decreased incidence of breast cancer,” Kuter said. “The question is, is that just slowing down the appearance of cancers that are already there, or is it truly preventing new cancers?”

    The new studies, one of 2,471 women in the United Kingdom and the other of 5,408 women in Italy, “just don’t have the statistical power” to reach as firm conclusions, said Fisher in a telephone interview. The new findings “don’t shake any of our confidence in the findings of the US study.”

    Both European studies found that tamoxifen was not linked to a statistically significant difference in the number of new breast cancer cases between women taking the drug and those taking a placebo.

    But the Italian study involved only women who had had a hysterectomy, many of whom had not only the uterus but also the ovaries removed. Women who have had their ovaries removed are considered at lower risk of breast cancer because without ovaries, a woman produces drastically reduced levels of the hormone estrogen, which drives many breast tumors.

    Since the Italian study was both smaller than the American study and involved women at low or average risk of breast cancer, it is less likely that any protective effect of tamoxifen would show up.

    The British study did include women at high risk of breast cancer by virtue of having a strong family history of the disease but did not include women with other risk factors such as early age at first menstrual period, late age at first childbirth, and biopsies of the breasts for suspicious lumps.

    This means that since the American women may have been at higher overall risk, a protective effective of tamoxifen would be more likely to show up in the American data, said Dr. Barry Kramer, deputy director of the division of cancer prevention at the National Cancer Institute.

    The American women were also older than the European women, and because breast cancer risk rises with age, this, too, means that a protective effect of tamoxifen would be more likely to show up in the American study.

    Another confounding factor was that women in the European studies were allowed to take hormone replacement therapy – including estrogen – even if they were also taking tamoxifen, an estrogen blocker. The American women were not.

    In the British study, about 41 percent of the women were taking hormone replacement therapy and in the Italian study, about 15 percent, said Kramer of NCI. “So the question is, could you be blunting the effect of tamoxifen” with estrogen?

    The Italian study also showed a trend toward a statistically significant protective effect of tamoxifen in women who took the drug for more than one year; however, many of the Italian women dropped out in the first year of the study.

    Damaged Brains; The outcomes are better and the outlook is better still

    July 6, 1998 by Judy Foreman

    Susan Rioff, a 51-year-old mother in Lexington, was enjoying her last ride at a Wyoming dude ranch four years ago when her horse bolted, tossing her onto her (helmetless) head.

    For 24 hours, she hovered near death. For another 24, she slipped in and out of consciousness. Slowly, amazingly, she recovered, and today she is once again performing with her choral group and caring for her kids. But she’s upfront about her daily struggles with depression, suicidal thoughts, memory problems and the “invisibility” of her injury.

    “I have numbness in one leg and I can’t taste or smell, but nobody can see that. I feel very upset about that. People talk about what they eat and smell all the time,” she says.

    Dr. Claudia Osborn, 43, was an osteopathic physician in Michigan 10 years ago, when she got hit by a car while riding – also helmetless – on her bike. Her brain was severely injured.

    She, too, recovered enough to write a book about it. But she can’t practice medicine – though she can teach – and needs beepers to stay focused on basic tasks like cooking and driving.

    By comparison, Diane Stoler, 51, a North Shore psychologist, is lucky: She can practice part-time, despite her brain injury eight years ago, when she suffered a stroke while driving and had a head-on collision. But she’s had to re-learn everything: “I had no idea what money was – I had just green paper and metal coins. There was no such thing as time.”

    Every year in this country, 2 million people suffer a traumatic brain injury. More than 373,000, perhaps half a million, need hospitalization; an estimated 60,000 die.

    In fact, accidents are the leading cause of death in people under 24, and brain injuries account for the lion’s share of those fatalities. Many such injuries are caused by car crashes, assaults, and riding bikes, including motorcycles, without helmets.

    But treatment is improving dramatically and should get even better as hospitals adopt guidelines promulgated two years ago, especially if new therapies now being tested pan out. Many hospitals, including the major Boston medical centers, are now following these guidelines.

    In the 1970s, 55 percent of brain-injured patients died, says Dr. Jam Ghajar, president of the Aitken Neuroscience Center in New York. In the 1980s, as doctors learned to monitor brain pressure caused by swelling after injury, the death rate dropped to 35 percent, he says.

    Now that they’ve also learned to keep systemic blood pressure high enough to further counteract brain damage from oxygen deprivation, deaths are down to 20 percent or less – at least at major trauma centers.

    And new treatments, including hypothermia – chilling patients to 89 degrees Fahrenheit to reduce brain damage – may help more.

    In a study of 82 patients published last year, a team led by Dr. Donald W. Marion, director of the brain trauma research center at the University of Pittsburgh, found hypothermia speeds neurological recovery and doubles the chance of a good outcome, apparently because it decreases brain metabolism and therefore its need for oxygen.

    Several weeks ago, a hypothermia study of about 400 patients sponsored by the National Institutes of Health was stopped early by reviewers. NIH won’t say why yet, but in general, reviewers do this only if they think the outcome is already so obvious it would be unethical to deny patients access to a clearly effective treatment, or to expose them further to a dangerous or useless one.

    With many brain injuries, the most devastating problems are caused not by the initial blow but by the bruising and swelling that occurs after the brain has been bounced harshly inside the skull. Usually, bruising happens right away, but swelling increase for several days.

    When bleeding occurs, blood vessels go into spasm, which reduces blood flow, causing parts of the brain to become oxygen-deprived. Blood clots, which often need to be removed surgically, can also develop, often between the brain and the meninges, the covering surrounding the brain.

    Even where there is no bleeding, brain injury can disrupt a delicate system called the blood-brain barrier. Normally, the walls of blood vessels keep large molecules from seeping into the brain. After a brain injury, the walls become more porous, allowing substances that cause no harm in the blood to leak in to the brain, where they become toxic.

    The biggest culprit is cytokines, products made by white blood cells that can be toxic to nerve cells. White blood cells themselves also rush into injured areas of the brain, where they help mop up dead cells but also contribute to swelling.

    Making matters worse, damaged brain cells also secrete glutamate, a neurotransmitter that, at normal levels, is essential for brain function. But glutamate can soar to 100 times normal after a brain injury, says Dr. Ross Bullock, a neurosurgeon at Virginia Commonwealth University.

    At those levels, glutamate is a bad actor indeed. It lands on NMDA receptors on brain cells, causing calcium to rush into the cell, which triggers swelling and cell death. Despite numerous studies, drugs designed to block NMDA receptors have failed to stop this deadly glutamate cascade, though a study is now under way to see if magnesium will work.

    Several years ago, alarmed by a string of disappointing results from clinical trials and inconsistencies in treatment among medical centers, a dozen leading neurosurgeons gathered to pore over the studies and come up with treatment guidelines for people with brain injuries.

    They found solid data showing that three common treatments were of no value: routine hyperventillation (mechanically forced respiration); steroids (which had been thought to reduce brain swelling); and long-term use of anticonvulsants (which don’t prevent epilepsy after more than a week of use).

    Based on somewhat less solid data, they did find reasons to recommend other treatments – inserting a tube into the brain to monitor intracranial pressure, keeping systemic blood pressure high enough to get oxygen into the brain and, if necessary, using barbiturates to reduce the brain’s demand for oxygen.

    In 1996, the group sent its recommendations – free – to all members of the American Association of Neurological Surgeons and the Congress of Neurological Surgeons, and they have been widely accepted as authoritative.

    Recently, other treatments have come under intense study.

    Because the injured brain is hyperexcited, researchers are trying to see if they can block the excessive firing of neurons with drugs that act on GABA receptors on the cells.

    They’re also exploring ways to block genes that trigger cell death and methods to find special progenitor stem cells in the brain that can be nudged to grow into healthy neurons to help the brain regenerate.

    Even if all these advances help, recovery from a devastating brain injury will still take months, sometimes years, of rehabilitation as the brain “starts rewiring and healing itself,” says Mary Ellen Cheung, an NIH neuroscientist.

    Rehabilitation is necessary for milder injuries, too, which can be frustrating precisely because they are so subtle.

    A brain-injured person may look and sound normal, says Howard Noe, a psychologist at Health South New England Rehabilitation Center in Woburn, but still have to work hard to remember things and fight against the tendency to become distracted.

    Noe recalls one patient who was driving when she was distracted by something rolling on the floor on the passenger side. She forgot she was driving and crashed into a tree.

    But perhaps the most basic key to recovery from any kind of brain injury is to acknowledge the deficits. “Don’t be afraid to talk about it to other people, even though they can’t see it,” says Rioff of Lexington. “It’s a part of you that matters a lot.”

    1.  THE TOLL BRAIN INJURIES TAKE

    PLEASE SEE MICROFILM FOR CHART DATA GLOBE STAFF CHART

     

    2.  To learn more

    For more information, call:

    • Brain Injury Association, 1-800-444-6443.
    • Massachusetts Brain Injury Association, 1-800-242-0030.

    On the Internet, look at www.ninds.nih.gov

    You might also want to read the following books:

    • “Over my Head,” by Claudia L. Osborn, Andrews McMeel Publishing, Kansas City.
    • “Coping with Mild Traumatic Brain Injury,” by Diane Roberts Stoler and Barbara Albers Hills, Avery Publishing Group, Garden City Park, N.Y.

     

    ‘Routinely’ covered by insurance? Not always.

    June 29, 1998 by Judy Foreman

    Hanna Gremp, a 6-year-old from Modesto, Calif., is a gorgeous child. Big brown eyes. Long blond hair. Button nose.

    But she was born with incomplete outer ears. She could hear with a hearing aid, but her ears looked deformed. She was an obvious candidate, it would seem, for reconstructive surgery.

    The Gremps’ insurer paid for surgery to begin reconstructing her ears when Hanna was five. But it can take several operations to reconstruct deformed body parts, and after the first, the insurer left the state.

    Last year, the night before Hanna was to have a second operation, the Gremps found out their new insurer had denied coverage, arguing the surgery was cosmetic. Only after their attorney fired off a letter to the insurer, Hanna’s mother Luann says, did the company agree to pay for the next surgery – but not until next month.

    The family had wanted it done “by the time she started first grade,” her mom says. “She’ll miss a lot of first grade now.”

    Michael Hatfield, a charming 19-year-old from Houston, now a sophomore at Emory University, tells an equally harrowing tale of having to fight for surgery that was once routinely covered.

    Born with eyes too far apart and insufficient bone structure in his face, he had three operations to move his eyes closer and provide more support for his nose, with a bone from his rib. But last year, his insurer balked at the final planned surgery, claiming that constructing eye sockets and cheekbones was “not necessary to correct a functional disorder.”

    The insurer caved in only after the Hatfields went public with their fight. The fact Mike could function with a deformed face was not the issue, his mother says: “Every single person deserves cheekbones and the eye sockets everybody else has.”

    Though the battle for coverage for children’s reconstructive surgery has not yet hit Boston with a vengeance, it is gathering steam on the West Coast and moving East fast.

    In fact, in Washington, D.C. last week, the American Society of Plastic and Reconstructive Surgeons kicked off a campaign to highlight what the surgeons say is an alarming tendency for health insurers to deny claims for reconstructive surgery, including for kids with birth defects like cleft lip and cleft palate, problems they have historically paid for.

    Two to 3 percent of all kids are born with structural defects, says Dr. Edward Lammer, director of the craniofacial anomalies center at Children’s Hospital in Oakland. And one in every 700 is born with a cleft lip and palate, in which the upper lip and roof of the mouth fail to fuse.

    Hard data on the number of denied claims for reconstructive surgery don’t exist, but 13 states have become concerned enough to pass laws addressing the issue. (In Massachusetts, a bill to mandate coverage for such children is languishing in committee.)

    When the surgeons’ group recently surveyed its members, more than half the respondents said that in the last two years, they’d had pediatric patients who’d either been denied coverage or had encountered long delays in getting surgery coverage approved for craniofacial or other congenital anomalies.

    And they’re not talking cosmetic surgery here, which the American Medical Association defines as surgery to reshape normal body structures to improve appearance and self-esteem. They’re talking reconstruction – surgery performed on abnormal body structures caused by congenital defects, developmental abnormalities, trauma, infection, tumors or disease.

    “It’s a total disgrace for the insurance industry. How can they in good faith and conscience sleep at night – to say a child born without an ear doesn’t need an ear?” fumes Dr. Henry Kawamoto, a plastic surgeon in Santa Monica, Calif. Denial of claims is “an epidemic,” he says. “It was not a problem in California until about five years ago.”

    Not surprisingly, health insurers take a different view.

    “We’ve heard this before, this charge. But we’ve not seen any substantiation,” says Don White, spokesman for the American Association of Health Plans, the trade group for HMOs.

    Richard Coorsh, spokesman for the Health Insurance Association of America, the trade association for many other insurers, says, “We don’t collect information on this.”

    But surgeons say the problem is real, and, like other trends in health care economics, it’s working its way east from California.

    It’s become “really rampant in the last year,” says Dr. John Persing, chief of plastic surgery at Yale University School of Medicine. “Prior to that, it was never really disputed that a child with a cleft lip and nasal deformity was benefitted by steps to try to bring a child to a more normal appearance. . .The kids wind up getting really stressed out.”

    So far, the denial of claims in Boston does not appear to be widespread, say Dr. Michael Lewis, chief of plastic surgery at New England Medical Center, and Dr. John Mulliken, director of the craniofacial center at Children’s Hospital in Boston.

    But it happens. One of Lewis’ patients, a 6-year-old Medford girl whose ears are very large and whose neck is “webbed” (meaning abnormal tissue grows from the ears to the shoulders) was recently denied coverage for plastic surgery because her insurer decided the operation was cosmetic. Her mother vows to keep fighting.

    “This is a pretty obvious visual deformity that sets her aside from the average child,” says Lewis. “I have not had trouble in the past getting this approved.”

    And while cynics might wonder whether the surgeons’ concern is sparked by worry about their own incomes, they say it’s not.

    “We’re not fighting for these kids because we’re making large fees. We’d be financially much better off doing cosmetic surgery,” says Mulliken of Children’s.

    On average, he says, repairing a cleft lip takes four hours, and the surgeon’s fee is $ 900. Cosmetic surgery on the upper and lower eyelids takes two hours, and the surgeon gets $ 4,000, paid by the patient. A 3-hour facelift gets the surgeon $ 6,000.

    Dentistry and orthodontics, traditionally excluded from health care plans anyway, are a particular problem for kids with facial defects, adds Dr. Stephen Shusterman, dentist-in-chief at Children’s.

    Reconstructing the bite or the teeth of a child with a cleft palate is “obviously very necessary,” he says. But insurers “usually reject it on the grounds that it’s dentistry,” leaving parents with dental bills of $ 10,000 to $ 15,000.

    So what should you do if you’re told that surgery to correct a serious deformity in your child is not medically necessary?

    “Don’t give up,” says Lammer of Oakland. “The squeaky wheel is necessary to make the system work properly. . .it’s all about money.”

    Mike Hatfield agrees, adding that while he was confident and happy before his final surgery a year ago, his life now is “completely changed. Now I have the exact same opportunity that other kids going off to college have. It’s all about first impressions in this country.”

    Women also often denied coverage

    It’s not just kids with facial deformities who face hurdles in getting insurance coverage for reconstructive surgery. It’s women seeking breast reconstruction or reduction surgery, too.

    While many women who have lost a breast to cancer seek reconstruction of that breast and reduction of the opposite breast to achieve a symmetrical appearance, some women without cancer also request reduction surgery because of the neck, shoulder, and back pain that can result from heavy breasts.

    In a recent survey, 84 percent of members of the American Society of Plastic and Reconstructive Surgeons said that in a one-year as many as 10 of their patients had been denied coverage for breast reconstructive surgery. The surgeons’ group is still collecting data on reduction surgery.

    Currently, 26 states have passed laws to ensure access to reconstructive surgery, including secondary surgeries if, as often happens, the first one doesn’t yield the desired result.

    When surgeons are reconstructing a breast after mastectomy or reducing the opposite breast, the result “cannot always be perfect the first time,” says Dr. Sumner Slavin, a plastic surgeon at Beth Israel Deaconess Medical Center and immediate past president of the New England Society of Plastic Surgeons.

    “The biggest problem is in obtaining coverage for breast reduction. Traditionally, this has been considered a ‘medically necesssary’ procedure. Now, insurers are insisting that a woman be no more than a certain percent above ideal body weight and that surgeons remove a lot of tissue – often 500 grams (almost a pound) from each breast to be reduced,” he says.

    Removing 500 grams may be appropriate in a large woman, he says, but not in a small woman.

    In late December, for instance, Tufts Health Plan sent letter to doctors clarifying what it said had long been its policy: it would pay for breast reduction surgery only when “medically necessary.” Because of longstanding complaints from doctors, the plan did agree to fund surgeries to remove slightly less than 500 grams from each breast in smaller women, says Dr. Lisa Letourneau, a medical director at Tufts.

    In Massachusetts, the Senate Ways and Means committee is considering a bill (by Democratic Sen. Lois Pines of Newton) calling for insurers to pay the full cost of all stages of reconstruction surgery for women who have had mastectomies, including reduction surgery if necessary. Maryland, Maine, and Connecticut have passed similar laws.

    A similar bill by Sen. Mark Montigny (D-New Bedford) is still before the insurance committee, a preliminary stage.

    Vaccines won’t win war on ticks

    June 22, 1998 by Judy Foreman

    New Englanders and others who live in areas plagued by Lyme disease have been eagerly anticipating the advent of a vaccine, hoping perhaps to be able enjoy the woods and marshes again without eternal vigilance.

    Two vaccines are indeed on their way, but anyone who thinks they’ll put an end to Lyme disease anxiety is doomed to disappointment.

    Several weeks ago, an FDA advisory panel recommended approval of a vaccine made by SmithKline Beecham. Given as a series of three shots over a year, it was 79 percent effective at preventing Lyme disease in tests involving10,936 people aged 15 to 70. The FDA isn’t bound by the panel’s vote, but approval is considered likely.

    Another company, Pasteur Merieux Connaught, is expected to submit a similar vaccine with comparable efficacy — tested in 10,305 people aged 18 to 92– to the FDA by this fall.

    It’s wonderful, of course, to have “any new tools of prevention,” as Dr.David Dennis, coordinator of the Lyme disease program at the federal Centers for Disease Control and Prevention, puts it.

    And in areas where Lyme disease is endemic, including many parts of New England, a vaccine will “make a real difference,” agrees Dr. Allen Steere, chief of rheumatology and immunology at New England Medical Center.

    But even when the vaccines become available — and SmithKline’s could be out in a few months — you won’t be able to ramble freely in the boonies if you really want to avoid Lyme disease, which strikes 12,000 to 16,000 Americans a year.

    For one thing, the studies so far have tested the SmithKline vaccine in people between 15 and 70 and the Connaught vaccine in people 18 to 92.Until research in children is completed, it’s not clear how well the vaccines will work in these groups. Nor is it clear whether people with certain diseases, including rheumatoid arthritis, should get the vaccines.

    Also, since the vaccine doesn’t kill the tick itself — just the bacterium

    inside it — you have to watch out for ticks anyway, because the ticks that spread Lyme also carry other diseases like babesiosis and ehrlichiosis.

    It’s important to remember that it takes three shots given over a year’s span to get adequate protection. The SmithKline vaccine is only 50 percent effective after two shots. This means you have to start shots in advance; even if the vaccine is approved soon, you’d have time for only two shots by next summer.

    And because of the way the vaccines work, the protection wears off fast, which means you’ll need shots every year. What happens is that the vaccines stimulate your immune system to make antibodies to a protein on the surface of the bacterium (Borrelia burgdorferi), which lives in the tick’s gut.When the tick takes a drink of your blood, it sucks in these antibodies, which then kill the bacteria inside the tick before they get in your blood stream. Your immune system never encounters the whole bacterium, which would give longer lasting immunity, so the immunity gets weaker with time.[CORRECTION – DATE: Tuesday, June 23, 1998: CLARIFICATION: A description in yesterday’s Health Sense column in the Health/Science section on how a Lyme disease vaccine works was incomplete. It should have said that even with the vaccine, people should remain vigilant because the antibodies stimulated by the vaccine don’t act on the tick itself — just the bacterium inside it, and

    the tick could be carrying other diseases.

    If, despite vaccination, a bacterium does enter your body, it substitutes another protein on its surface, against which the vaccine would not work.So if the first line of defense fails, you may still get infected.

    Some doctors also worry that in people who already have a chronic form of Lyme disease, getting vaccinated might make things worse. “I would be extremely cautious about [vaccinating] anyone who thinks they had Lyme disease,” says Dr. Sam Donta, a specialist at Boston Medical Center and the Boston Veterans Affairs Medical Center.

    But it’s not always easy to tell who’s been infected, because some people do not have obvious symptoms. In fact, Lyme disease is both often-missed and overreported. If you fail to notice the rash that follows within a few days of a bite from an infected tick, the symptoms that arise in the next few weeks — fever, chills, headache and fatigue — might be mistaken for something else.

    In other words, even if you decide to be vaccinated — which makes sense if you live in an endemic area, despite the shortcomings — you will still need to take precautions against ticks, says Dr. Bela Matyas, medical director of epidemiology at the state Public Health Department.

    The bottom line is that “70 percent of people contract Lyme disease in their own backyard,” says David Weld, executive director of the American Lyme Disease Foundation in Somers, N.Y.

    That means that you’ll have to stay vigilant — all summer long.

    SIDEBAR

    With Lyme disease, prevention is the key

    A mild winter and a wet spring mean this will be a banner year for ticks, and the rate of new Lyme disease cases is already double last year’s.

    Here’s how to protect yourself:

    • Learn to look for the deer tick, Ixodes scapularis, on your skin or clothing after walking in fields or woods. The tick is most likely to bite in the nymph stage, when it’s a dark speck the size of a poppy seed.
    • If you can’t avoid areas where ticks thrive — woods, marshy areas, high grass, and bush — wear long-sleeved shirts, long pants tucked into socks, and closed-toe shoes. Light colors make it easier to spot ticks on your clothes.
    • Spray clothes with insect repellant. Permethrin, the most effective, kills ticks on contact, but it’s very irritating, so don’t get it on your skin.
    • Standard repellants for use on skin contain DEET (diethyltoluamide) and are also effective. High dose DEET may cause nerve damage in rare cases, and more often can cause allergic reactions. Avoid concentrations higher than 30-35 percent for adults; 10-15 percent for children. Don’t use it on your face and wash your hands so it doesn’t get into your eyes if you rub them. And don’t use it on kids under a year old.
    • When you get home from a tick-infested area, shower or bathe and check yourself and your children carefully for ticks.
    • Remove ticks with tweezers within 24-48 hours. Grab the tick as close to the skin as possible.
    • If pets have been in tick-infested areas, check them, too, as well as areas where they sit or lie.
    • If you become infected, call your doctor; antibiotics are effective, especially if given early.

    For more information, contact:

    Lyme Disease Foundation hotline 1-800-886-LYME (1-800-886-5963) or 860-525-2000.

    American Lyme Disease Foundation, Inc., 914-277-6970.

    (Web site: www.aldf.com).

    Kava root is hot herb for anxiety

    June 15, 1998 by Judy Foreman

    Traditionally, whenever the people of the South Pacific islands wanted to welcome a visitor or provide a social lubricant for communal rituals, they drank a potent potion made from the roots of an intoxicating pepper plant, kava kava.

    The jaw-breaking job of turning the tough root of the piper methysticum into homemade brew fell to young virgins — male or female, depending on the island — who spent hours chewing the root, then spitting out the masticated mush into a communal pot, where it was left to mature for several hours before being quaffed.

    The effects, says herbal “medicine hunter” and kava promoter Chris Kilham of Lincoln, were nearly instantaneous: a feeling of profound well-being and relaxation.

    What more could one ask? Okay, maybe a little scientific validation. And access.

    Westerners are beginning to get both. In fact, although there are other herbs that are said to allay anxiety, it’s kava that seems poised to take off like St. John’s Wort, the herbal antidepressant that was virtually unheard of a couple of years ago in this country and now commands $200 million a year in sales.

    “The kava market has come out of nowhere. It’s gone from next to nothing to $40 to $50 million in sales in one year,” says Thomas Aarts, executive editor of the Nutrition Business Journal in San Diego. At that, it’s still a small chunk of the booming business in dietary supplements, which has grown 14 percent a year for the last three years to $11.5 billion now, driven in part by the popularity of herbals.

    “Kava is a hot herb,” agrees Matthew Patsky, a stock analyst who specializes in the natural food and nutrition industry for Adams, Harkness & Hill, a Boston investment bank. “It works great for me.”

    Others say kava induces a state of relaxation without fogging the mind as some prescription tranquilizers can. Kava produces “a delightful feeling,” enthuses Kilham, who consults for herbal products companies that import or market kava.

    Since many things that sound too good to be true are, some caveats: The scientific evidence on the benefits and possible risks of kava is still limited. There have been 38 double-blind, placebo-controlled studies on St. John’s Wort, also known as hypericum, says Dr. Harold Bloomfield, a California psychiatrist who has written a book on it.

    By comparison, there are only a half dozen decent studies on kava, he says. “We need many, many more — this is preliminary research at best.”

    Dr. Steven E. Hyman, director of the National Institute of Mental Health, agrees, calling the kava data “quite weak.” But NIMH is intrigued enough that it may fund research on it.

    If the research is not yet there, the need is: An estimated 23 million Americans wrestle with crippling, life-wrecking, chronic anxiety, and millions more suffer milder forms.

    Granted, there are mainstream treatments available, including anti-anxiety drugs like Valium, Xanax and Klonopin, which are often effective but can cause cause physical dependence. Non-habit forming drugs like Prozac, an anti-depresssant, also work against anxiety, as does cognitive-behavior therapy and other “talking” psychotherapy.

    Despite all this, there’s still enough angst out there that the potential demand for herbal tranquilizers is huge.

    You should, of course, consult your doctor before self-medicating for severe anxiety — or any other serious medical problem. But if you decide to try kava, here’s what you need to know.

    The active ingredients in kava go by two interchangeable names: kavalactones or kavapyrones. Check the label — it should say each capsule is “standardized” to roughly 75 milligrams of kavalactones or kavapyrones, meaning the concentration is consistent from batch to batch. (Note: Kava pills come in varying strengths — from 100 to 250 mg — and the percentage of kavalactones also varies. A 250-mg capsule of 30 percent extract would contain 75 mg of kavalactones.)

    The German Commission E, a government-appointed panel that reviews herbal remedies, has approved kava to combat anxiety, stress and restlessness and recommends a dose of 60 to 120 milligrams a day of kavapyrones.

    Gail Mahady, a pharmacist and plant medicine specialist at the University of Illinois, adds that side effects are apparently rare. A monograph she’s writing for the World Health Organization will endorse the use of kava for anxiety symptoms.

    Some people are allergic to it, however, especially those with known allergies to pepper, and kava can cause a temporary yellowing of the skin if used too long. The German commission recommends using it for not more than three months and says pregnant or nursing women and people with serious depression should not take it at all.

    For many people, though, kava appears to be both safe and effective at the recommended doses, says Varro Tyler, a plant medicine specialist emeritus at Purdue University.

    In fact, six carefully-done studies of kava extracts, all done in Germany since 1989, show kava is “quite satisfactory” when compared to a placebo or a prescription anti-anxiety drug such as oxazepam (Serax), Tyler adds.

    Kava is not only a potent muscle relaxant, it also acts, just as alcohol and prescription anti-anxiety drugs do, on so-called GABA receptors in the brain, which regulate anxiety. Kava may also quiet a brain region, the amygdala, which also governs anxiety.

    So far, there’s “no evidence of physical or psychological dependence,” adds Dr. David Mischoulon, a psychiatrist and psychopharmacologist at Massachusetts General Hospital.

    But even those sympathetic to herbal remedies urge caution, among them Dr. Laura Kramer, a psychiatrist at the American WholeHealth Arlington-Cambridge Center.

    Unless your doctor advises otherwise, she says, you should not drive or operate machinery while taking kava because it may make you drowsy. Nor should you take it with other drugs that act on the central nervous system, including alcohol or prescription anti-anxiety drugs like benzodiazepines. At high doses, kava may cause intoxication.

    “You have to treat kava as a medication — you have to respect it,” she says.

    And start with low doses, about 70 to 85 mg of kavalactones, taken at night, says California psychiatrist Bloomfield. If that’s not enough, he says, take a second pill in the morning.

    If, after a week, that is still not enough, you can add a third pill at midday. But once you’re feeling consistently more relaxed, taper down by one pill every few days.

    And if, despite three pills a day, you’re still very anxious, don’t waste any more time. Call your doctor.

    SIDEBAR 1:

    For general information on anxiety, call:

    • 1-888-8-ANXIETY, National Institute of Mental Health information line, which will mail you a pamphlet. (You don’t have to dial the `y’ to get through.)
    • The Center for Anxiety and Related Disorders at Boston University: 617-353-9610.
    • Or you can contact the following organizations:
    • National Alliance for the Mentally Ill, 200 N. Glebe Road, Suite 1015, Arlington, Va. 22203-3754. Tel: 800-950-NAMI (950-6264).
    • Anxiety Disorders Association of America, Dept. A, 6000 Executive Boulevard, Suite 513, Rockville, MD 20852. Tel: 301-231-9350.
    • Freedom from Fear, 308 Seaview Ave., Staten Island, N.Y., 10305. Tel: 718-351-1717.
    • American Psychiatric Association, 1400 K Street NW, Washington, DC 20005. Tel: 202-682-6000.
    • American Psychological Association, 750 1st Street NE, Washington, DC 20002-4242. Tel: 202-336-5500 or 800-374-2721.
    • Association for Advancement of Behavior Therapy, 305 7th Avenue, New York, NY 10001. Tel: 212-647-1890.
    • National Mental Health Association, 1201 Prince Street, Alexandria, Va., 22314-2971. Tel: 800-969-6642.
    • National Mental Health Consumers’ Self-Help Clearinghouse, 1211 Chestnut Street, Philadelphia, Penn. 19107. Tel: 800-553-4539.

    SIDEBAR 2:

    Topical reading, for more information on herbal remedies for anxiety, you might read:

    • “Healing Anxiety with Herbs,” by Dr. Harold Bloomfield, HarperCollins.
    • “Rational Phytotherapy — A Physician’s Guide to Herbal Medicines,” by Volker Schulz, Varro E. Tyler, and Rudolf Hansel, Springer-Verlag N.Y.
    • “Kava — Medicine Hunting in Paradise,” by Chris Kilham, Park Street Press.

    SIDEBAR 3:

    Other herbs may ease anxiety.

    Kava is currently the hottest herbal treatment for anxiety, but other plant medicines may also help. Before you experiment, though, talk to your doctor. Many herbs can cause allergic reactions. And don’t take multiple psychoactive drugs of any type — including alcohol and herbals — at the same time, unless a doctor says otherwise.

    Among the herbs often used for anxiety are these:

    • Valerian. This herb has been used for more than 1,000 years as a minor tranquilizer and sleep inducer. Both the German Commission E and the World Health Organization have reviewed it and deemed it safe and effective. For insomnia, the suggested dose is 450 to 600 milligrams of valerian extract at bedtime. It may take two to four weeks before you see any effect.

    Eight placebo-controlled, double-blind studies show valerian reduces the time it takes to fall asleep. Data also suggest that valerian improves mood and scores on a commonly-used anxiety rating scale. But the stuff smells awful, and doses vary. So read the labels and stick to the recommended doses.

    • St. John’s Wort. This herbal anti-depressant may also help with anxiety, says the German Commision E, though the data are skimpy. Unlike kava, which works right away, St. John’s Wort — taken as a 300 mg pill three times a day — takes two to four weeks to kick in. Dr. Harold Bloomfield, a California psychiatrist, often starts patients on kava for its immediate effects and adds St. John’s Wort, then tapers off kava as St. John’s Wort kicks in. St. John’s Wort can cause sun sensitivity.
    • Chamomile. The German Commission E and WHO approve this for nervous upset and mild insomnia — especially as a tea or extract. Though a 1994 study shows it contains apigenin, an anti-anxiety agent, it’s weaker than valerian and kava. People who are allergic to ragweed, chrysanthemums, and other plants in the daisy family should avoid it.
    • Passion Flower. Hops. Lavender. Lemon balm. All these herbs are approved by the German Commission E, but there’s little scientific data to support their use for anxiety.
    • Catnip. Pure folklore. There are few, if any, studies of its safety and efficacy. (Like valerian, catnip jazzes up cats but sedates people — for utterly mysterious reasons.)

    Diapers not only option

    June 1, 1998 by Judy Foreman

    Over the years, Kathy Duffy, a 38-year-old school teacher in Reading, tried many treatments for her severe incontinence — pills, injections, exercises, even “retraining” her bladder.

    Everything helped some. Even so, she was always ducking out on her second graders to rush to the bathroom. She didn’t sleep much, either. The urge to urinate woke her every hour or so.

    Two weeks ago, Duffy and two other women became the first patients in New England to have a new electrical device called InterStim implanted near their spines to calm bladder spasms.

    For the first time in years, Duffy says, she’s sleeping five hours at a stretch, thanks to the device, which seems to slow the excessive firing of nerves to the bladder.

    Urinary incontinence strikes 15 million Americans, most of them women and most, like Duffy, well under 65. Unlike Duffy, many of those whose bladders betray them suffer in shameful silence, avoiding other people lest they have an “accident.”

    Luckily, researchers and venture capitalists are not so shy. In fact, convinced of the demand for something better than adult diapers, they’re racing to develop pills, plugs, and other devices to keep bladders from their dismal dripping.

    Incontinence comes in two main forms — urge problems like Duffy’s, in which bladder muscles go into spasm, making it impossible to stop urine flow once it starts; and stress problems, in which weak sphincter or pelvic muscles fail to keep the bladder neck closed during sudden physical stresses like coughing, sneezing, laughing, or exercising.

    It can also occur when an obstruction — usually an enlarged prostate in men — blocks urine flow, leading to overflow or urge problems.

    “For every kind of incontinence, there’s a pill, or behavioral intervention, a device or an operation,” says Dr. Neil Resnick, an incontinence specialist at Brigham and Women’s Hospital. “Cure is usually possible, and usually without surgery.”

    The trick is to diagnose what kind of incontinence you have — you can have more than one — and be savvy about your options.

    In the past, for instance, incontinent women were often told to have a hysterectomy. But you don’t need that, says Dr. Deborah Lightner, a Mayo Clinic urologist, unless your uterus has prolapsed and is pressing on the bladder.

    In fact, for most people the best bet is to start with the simplest, least invasive options.

    For stress incontinence, this means Kegel exercises, in which you strengthen pelvic floor muscles, which can be damaged by giving birth. To identify these muscles, try stopping urine flow in midstream. If you can, you’ve got the right muscles. Once you’ve found them, make that same exertion 100 times a day, but not during voiding lest you retain urine.

    If you can’t pinpoint those muscles on your own, go to a continence center (many hospitals have them) and ask for biofeedback training, a system of electrical sensors on patches on the skin or in the vagina or rectum that send an unmistakeable signal when you contract the right muscles.

    If your problem is urge incontinence, bladder retraining can help. You try to stick to a pre-set bathroom schedule, urinating regularly before the bladder gets too full, and learning to suppress temporarily the urge to urinate.

    If these simple behavioral tricks don’t help, there’s a slew of devices to control leaky bladders, most of them available by prescription. Some women, for instance, use vaginal cones, tampon-like devices held in the vagina for 15 minutes twice a day to strengthen pelvic muscles.

    Others use pessaries, like Introl, that are inserted into the vagina to support the bladder neck, though these have to be carefully fitted and changed regularly. Other women prefer a product like Capsure that plugs the opening of the urethra; it stays in place by suction and is pulled out by a nipple during urination. New devices like Inflow, which is not yet approved, may be left in the urethra for as long as a month.

    Soon, women may also have another option — a foam patch called Impress that’s designed to stick to the urethral opening like a tiny BandAid. Impress has been approved but has not yet been marketed for over-the-counter use.

    If none of these options works, you can try collagen injections — done via a needle passed through the urethra. The collagen squeezes the side of the urethra together, slowing urine flow.

    For sheer convenience, many women opt for medications rather than devices. Estrogen, for instance, can make the urethra more pliable and easier to seal and it can be taken in a variety of ways — pills, patches, vaginal cream or a vaginal ring that releases the hormone slowly.

    For urge incontinence specifically, other drugs also help — including old standbys like Ditropan and newer ones like Levbid and Detrol, says Dr. David Staskin, director of the continence center at Beth Israel Deaconess Medical Center.

    These drugs all block acetylcholine, a chemical secreted by nerves that tells muscles to contract. The newer verions of this medication cause fewer side effects such as dry mouth and constipation.

    Tofranil, an anti-depressant that has the useful side effect of relaxing bladder spasms and tightening the sphincter, can also help, says Dr. Stanley Swierzewski, III, co-director of the Lahey Clinic continence center.

    For men with incontinence caused by an enlarged prostate, drugs like Minipress, Hytrin, Cardura or Flomax that relax the urethra can be very helpful. So does shrinking the prostate itself — with a drug called Proscar, microwave therapy, or surgery.

    Surgery is also an option for some women, and for those with stress incontinence two options work well. In the “suspension” procedure — done through a vaginal or abdominal incision — surgeons stitch a drooping bladder to ligaments in the pelvis. In the other, a “sling” is made for the bladder with fascia tissue from the patient or a cadaver.

    In the past, surgery has not been a useful option for women with urge incontinence. But surgery to implant the InterStim “pacemaker” like Duffy should become a growing option.

    The theory behind InterStim is that urge incontinence is triggered by overactive nerves called C-fibers that run from the spinal cord to the bladder. The C-fibers are believed to govern urination in babies, whose bladders empty uncontrollably. These fibers are thought to be quiescent in adults, though they can be reactivated, sometimes after back surgery or pelvic trauma.

    Applying an electric current to the bladder nerves seems to shut down the C-fibers but not normal fibers, says Swierzewski, who implanted the device in Duffy and two other patients.

    Other researchers are cautious. InterStim has been tried in fewer than 200 patients at about half a dozen centers, says Resnick. “The results are promising, but the number of people who’ve had the device implanted is still small.”

    But Duffy needs no convincing: “I’m very pleased.”

    Mining veins – Endoscopy emerging as safer, less painful way to gather grafts for coronary bypasses

    May 25, 1998 by Judy Foreman

    It’s early afternoon, a perfect spring day. Outside the UMass Medical Center, employees savor the last of their lunch break, faces tipped toward the sun, legs splayed on the grass.

    Inside, in operating room 3, Evelyn Kolat, 74, lies inert, dwarfed by a vast array of surgical instruments, anesthesia paraphernalia, and a heart-lung machine.

    2:10 p.m. The OR team proceeds gingerly. Kolat’s heart rhythm is unstable, so Dr. Ellie Duduch, the anesthesiologist, induces sleep slowly. As Dr. Robert Lancey, the surgeon, waits, he takes a last look at her angiogram, noting where blood flow to her coronary arteries is blocked.

    2:42 p.m. Stable now, Kolat is deeply asleep. Duduch slips a breathing tube down her throat. Lancey gowns up. Nurses scrub Kolat’s chest and both legs.

    Kolat is about to join the nearly 400,000 Americans who have coronary artery bypass surgery every year.

    In most of these operations, a long incision – from knee to groin and often ankle to knee as well – is made to “harvest” a vein that will be cut into segments and stitched onto coronary arteries to bypass damaged areas. After surgery, patients often have more pain and infection from leg wounds than from incisions made in the chest through the breastbone to get to the heart. This is in part because fatty leg tissue does not have as good a blood supply as the chest.

    But Kolat, like an estimated several thousand patients worldwide, has opted for a new technique – endoscopic vein harvesting, in which a member of the surgical team, usually a physician’s assistant, makes from one to three tiny incisions in the leg, slides a long viewing tube along the outside of the vein, snips off side branches that feed the vein, then slips the vein out.

    2:56 p.m. Donna Iddings, a physician assistant, makes the first cut, a one-inch incision inside Kolat’s right knee. Moments later, Lancey, who has done 30 bypass operations in which the vein was harvested the new way, begins slicing open Kolat’s chest.

    Endoscopic vein harvesting takes longer – an hour or more, if the physician’s assistant is new at it, versus 20 to 40 minutes for the traditional method. It costs more, too, in part because the disposable endoscopy kits – several are on the market – cost $ 300 to $ 500. Some proponents say that the costs of these kits may be offset by shorter hospital stays and fewer post-operative complications.

    Granted the endoscopic technique doesn’t always work perfectly, but surgeons who try it are enthusiastic, as are patients.

    Gaston Poudrette, a 64-year-old Leominster man who had the surgery in March, says his leg looks good and healed fast.

    At the Lahey Clinic in Burlington, Dr. Richard D’Agostino, who has done seven operations with the technique, thinks “it will become the norm soon. It’s a significant advance.”

    Dr. Willard Daggett says it’s clear from his 103 patients at Massachusetts General Hospital and St. Vincent’s Hospital in Worcester that the endoscopic procedure reduces infections, leaves minimal scars and that “patients love it.”

    In fact, he says, while endoscopic surgery on the heart itself – using tiny incisions in the chest rather than opening the sternum – has captured more headlines, it is endoscopic vein harvesting that may prove more widely applicable. The minimal heart technique is chiefly for people who need only one coronary artery bypass and so far, the results have not been as good as the standard, open-chest surgery. By contrast, endoscopic vein surgery could help most bypass patients.

    It’s so new – many hospitals have only offered it for a few months – that the data are mostly unpublished, but provocative: At the Indiana Heart Institute in Indianapolis, a published study of 112 patients – half were randomly chosen to have the new technique, half the old – showed that only 4 percent of those who had the new procedure got leg infections while 19 percent of the others did, says Dr. Keith Allen. Those who had the new procedure also left the hospital a day earlier.

    At Chippenham Medical Center in Richmond, Va., physician assistant Nan Lambert has done more than 100 endoscopic vein surgeries and has compared them to the old technique. Nobody who had the new technique needed antibiotics or special care for leg wounds, but 5.8 percent of the others did.

    At Hahnemann University Hospital in Philadelphia, Michael Butler, a physician assistant, has compared 25 patients who got the new technique and 25 who had the old one. Less than one percent of those who got the new procedure had leg infections, but 5 percent of the others did. The first group also had no leg swelling, while 42 percent of the second group did.

    3:08 pm Iddings probes Kolat’s incision with her fingers, trying to find the vein. No luck. Lancey saws through Kolat’s sternum, then turns to help Iddings. He can’t find the vein either.

    3:13 pm They find it. Lancey returns to Kolat’s chest, using a metal device to spread open the sternum. Iddings inserts a long tube with a camera attached into the leg incision.

    3:17pm Trouble. The light doesn’t work. They fix it. Now there’s an image on the TV screen, but it’s bad. They call for new equipment. It comes, but the image is still blurry. Another call for help.

    3:34pm Another nurse arrives, takes one look at the image, swears softly, and decides the problem is moisture on the lens of the camera in the endoscope. They clear it. Now the image is beautiful.

    3:38 pm Iddings inserts the endoscope and squirts in carbon dioxide to expand the tissue around the vein. Her eyes glued to the TV screen, she begins snipping off the tiny branches that connect to the leg vein.

    4:00 pm With the vein nearly free, Iddings makes an incision in Kolat’s leg at the groin, to tie off the end of the vein that will stay in the body.

    4:15 pm They pull the vein out. It looks fragile and barely the diameter of spaghetti at one end, smaller than they’d hoped for.  Some veins, in fact, are simply too small to use, says Phillip Carpino, a physician assistant at New England Medical Center. But endoscopy can also “shred” veins, he says, especially in smaller, older women. “You have to be careful about the patients you select.”

    4:16 pm Lancey mutters about the “poor quality” of this vein but places it on a drape over the patient’s chest and begins the painstaking process of fixing leaks, which he detects by repeatedly injecting a solution into the vein. For the next 41 minutes, he stitches up tears, many of which soon leak again. Finally, he cuts off and discards the worst part, saying “We can’t take a chance on using it if it’s too thin-walled.” He only nods to Iddings, but she understands.

    4:56 pm Quickly, she begins slicing open Kolat’s other leg – this time from the groin to the knee. In barely 15 minutes, she’s removed a long stretch of vein. This one looks plump and healthy. The team relaxes palpably.

    5:10 pm “Ready to go on bypass,” says surgeon Lancey. The heart-lung machine, already hooked up, will keep Kolat’s blood circulating for the next 93 minutes whirs.  Lancey stops the heart with a potassium injection. He works quickly, using two segments of leg vein to bypass two arteries. For the third bypass, he severs one end of the nearby internal mammary artery and connects it to the heart.

    6:40 pm Kolat is off the heart-lung machine, her own heart back at work.

    7:40 pm It’s over. She’s on her way to intensive care.

    Four days later, she’s home, her left leg bearing a long incision, her right leg, two tiny ones. If endoscopy proponents are right, her right leg should be less painful than her left.

    But surgery is art as well as science and Kolat refused to bow to mere statistics. The truth is that “neither one hurts!”

    If you feel the urge to fast, keep it short

    May 18, 1998 by Judy Foreman

    Jesus thought fasting was good for the soul. So do Jews, who fast on Yom Kippur; Muslims, who fast by day during Ramadan; and Catholics, who fast on Ash Wednesday and Good Friday.

    Ghandi fasted for political reasons – to liberate India in the 1920s and 1930s. IRA member Bobby Sands did, too, fasting in prison in 1981 – he died after 66 days – to protest being denied prisoner-of-war status.

    And this month, Chuck Purcell, 52, a Virginia engineer at the Department of Energy, joined their ranks, taking nothing but water for 12 days. But like many other overfed folks in this land of plenty, he fasted not for spiritual or political reasons but for health: to try to lower his blood pressure and banish an itchy skin problem.

    Fasting – the voluntary abstinence from food – is probably as old as the urge for self-control and spiritual purification, and whether it achieves those ends is a subjective judgment.

    But proponents of fasting often claim it has medical benefits, too, like “detoxification,” healing auto-immune diseases, losing weight, and restoring bodily harmony. Does it?

    With some important qualifiers, the mainstream answer is no.

    “Fasting is not good for you medically,” says Dr. George Blackburn, a Harvard nutritionist. “There’s no such thing as a therapeutic fast.”

    Fasting “sounds like it would cleanse you, but there’s really no science to it,” adds Elizabeth Ward, a registered dietician and spokeswoman for the American Dietetic Association.

    “Fasting is basically bad news,” agrees physiologist Susan Roberts, head of the energy metabolism lab at Tufts University’s human nutrition research center.

    The reason they are so emphatic is this: When you stop eating completely, even if you take in plenty of water, you start breaking down protein – muscles – almost immediately.

    For the first 12 to 16 hours of total abstinence, there’s enough glycogen – stored sugar – in the liver to keep your brain, the chief consumer of energy, happy.

    But during the next day and a half, the body makes glucose from amino acids stolen from muscle protein. At first, you lose protein from inside a muscle cell, which can be replaced. But soon, whole cells disappear, and they’re hard to replace.

    After two days of abstinence, the body does begin burning fat for energy, but it takes 21 days before you adapt sufficiently to starvation that you stop losing protein. Granted, the body’s ability to switch from burning glucose to burning fat is a wonderful evolutionary adaptation that has undoubtedly aided survival when starvation, not obesity, was the chief threat.

    But burning fat also produces ketone bodies, snippets of fatty acids, that can dehydrate you, give you bad breath and, some nutritionists think, have toxic metabolic effects.

    It’s true you can live this way for more than 40 days, perhaps even 100, if you’re healthy and drink water. But ultimately, of course, if you don’t eat, you die.

    That said, there may be some medical benefits to fasting, particularly modified fasting, for carefully selected patients.

    There’s considerable evidence, for instance, that severe diabetes can be brought under control quickly on a modified fast in which the patient eats nothing but 9 to 12 ounces a day of protein (meat, fish or fowl), plus electrolyte supplements, and bicarbonate of soda, says Blackburn. Eating protein slows the wasting of muscle; and with no intake of carbohydrates, blood sugar stabilizes.

    Modified fasting can also lower blood pressure. During his fast, Purcell’s pressure fell from 140 over 90 to 108 over 78.

    Scandinavian data suggests that fasting also helps people with arthritis, says Dr. Joel Fuhrman, a guru in Belle Mead, N.J., who has overseen the fasts of thousands of patients, including Purcell, who paid $ 1,200 to live in Furhman’s home during his fast.

    When no food is taken in, Furhman believes, the body’s inflammatory response to foreign substances may decrease, thus allowing the hyperactive immune system – the hallmark of auto-immune diseases like rheumatoid arthritis – to calm down.

    Alternative medicine specialists, like Dr. Jay Glaser, medical director of the Maharishi Ayurveda Medical Center in Lancaster, believe modified fasting – a liquid diet (fruit and vegetable juices, broth and herb tea) one day a week – can also reset the “food-seeking thermostat” and “lighten the body.”

    In ayurvedic medicine, which originated in ancient India, fasting is believed to increase “digestive fire” (agni), get rid of metabolic clutter (ama), and offset heaviness (kapha).

    Western medicine scoffs at the notion that fasting is necessary to “detoxify” the body.

    “People think there’s a whole bunch of junk floating around in their bodies,” says dietician Ward. That’s nonsense – the liver, kidneys, colon and sweat glands do a great job of waste control. If you want to do something extra, eat more fiber.

    You’re also fooling yourself if you think fasting will jump start a weight-loss program. Fasting is a lousy way to lose weight – the metabolism slows down so much that when you start eating again, you’ll gain weight faster than before.

    It is true that fasting may give you a sense of control, says New York psychologist Sandra Haber, who specializes in eating disorders. Many people complain that they can’t control their spouse, their work, their kids, or their feelings, and that the only thing they do have control over is food intake, she says.

    But if control is the issue, “you’re better off going after it directly,” she says. In other words, “Let’s talk.”

    It is also true that fasting may give you an emotional high. Part of this may come from the stress of early starvation, which triggers adrenalin. And part may be a sense of “doing penance” and being “spiritually clean,” says Larry Lindner, executive editor of the Tufts University Health & Nutrition Letter.

    But fasting can also make you grumpy and weak. Reached on Day 10 of his fast, Purcell was in good spirits, but felt weak climbing stairs and admitted that Day 3, when he had dry heaves, had been “very difficult.” He was pleasantly surprised, though, that hunger was not a problem.

    If, despite the shaky medical justification, you still want to fast for spiritual reasons, that’s fine, nutritionists say. Just don’t do it too often and don’t do it in two-day bursts, which would maximize muscle loss. The best bet is to keep fasts short – 12 hours – and to load up on carbohydrates beforehand.

    While starving, Jews studied hunger

    Most of the research data on human starvation comes from heroic studies by Jewish doctors and nurses in the Warsaw Ghetto during the Nazi occupation of Poland in the early 1940s.

    As they themselves suffered, 28 doctors and perhaps 200 nurses kept track as the Nazis tried to starve the 250,000 Jews in the ghetto. It is “the only scientific study in which most of the investigators died at the end,” says Dr. Ronenn Roubenoff, a Tufts nutritionist. “It is truly a testament to the human spirit.”

    Though a child needs 1,000 calories a day, a woman 2,000 and a man, 3,000, the Nazis allowed so little food into the ghetto that people were living on 800 calories a day or less – usually from thin soups and crusts of bread.

    Meticulously, the researchers documented the effects: the loss of growth in children, the slowing of the eye’s response to light, the disappearance of the thymus gland (a key part of the immune system), the inability of the immune system to produce a normal response to tuberculosis skin tests and, of course, the loss of body fat and muscle.

    Although it is contrary to Jewish law, the doctors also did autopsies on 492 people who had no other cause for death than what the researchers called “hunger disease.” (Overall, during the three years the Jews were confined to the ghetto, 98,165 died, 18,320 of hunger disease.) The researchers also found death came quickly once people lost 40 percent of lean body mass.

    The researchers smuggled hundreds of pages of data out to a non-Jewish doctor at the University of Warsaw who buried the data in his backyard until the war was over. In 1945, one of the surviving ghetto doctors dug it up and wrote an 80-page summary, but before he could analyze the data fully, he died.

    His widow sent the summary, written in French, to the United Nations, where, “like any great bureaucracy, they filed it,” says Roubenoff. It was not until 1966 that a Polish history student stumbled upon it while looking through UN archives. He then contacted a Columbia University nutrition professor and together, they tracked down the primary data, analyzed it and published it in 1979.

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