Paying a price for weight loss

St. Louis Post-Dispatch

(KRT)

ST. LOUIS - In the world of before and after photos, Sandy Pierce is a size-4 celebrity.

She dropped from 302 pounds to 126 after her gastric bypass surgery in 2001.

Since then, she's become a strong advocate for other patients, providing encouragement and advice to hundreds who have had weight-loss operations. She arranges visits to the hospital rooms of people just undergoing the surgery. From her home in Cincinnati, she runs a support group called "Midwest Losers." Her work was honored with an award last October at a national surgery trade show.

But she's paid a price to be thin: Five surgeries in four years for related problems, including two hernias and three small bowel obstructions. She was just diagnosed with a crippling vitamin deficiency.

She's 41 now. She wonders how much more her body can take.

"I'm second-guessing everything right now," Pierce said recently. "Is this what I have to look forward to the rest of my life?"

Questions like this have become increasingly urgent as weight-loss operations surge in popularity, moving from the medical margins into the mainstream.

The number of operations has skyrocketed 400 percent since 1999, to 140,640 last year. The procedure could soon surpass prostate removal and hip replacement among top major surgeries.

The reason is simple. Obesity can cause debilitating medical problems. And nothing else seems to work for drastic weight loss. Not diets. Not drugs.

Surgery could solve a major public health problem in a country obsessed with thinness yet facing an obesity crisis. Hyped by celebrity testimonials and dramatic photos, surgery is now a favored treatment in the battle against fat.

But behind the lofty claims, serious concerns about safety and long-term effects are mounting, interviews with more than 40 doctors, researchers and patients show.

Long-term complications - from chronic pain to malnutrition - appear to be underreported. The central question of whether the surgery prolongs life remains unanswered. Short-term death rates - typically 1 in 50 patients, to 1 in 100 or better - vary wildly among hospitals. Worries are increasing about the field's rapid growth. Calls for more rigorous study of the surgery's risks are getting louder.

In the past two years, patient deaths have prompted at least 10 hospitals in six states to suspend their weight-loss surgery programs, the Post-Dispatch has found.

Some insurers are so alarmed they've stopped paying for the operation.

Dr. Barry Schwartz, former medical director and current vice president at Blue Cross Blue Shield of Florida, said he considers weight-loss surgery to be yet another discredited obesity treatment like amphetamines or phen-fen, the drug cocktail pulled from shelves in 1997. That was why the insurer - the state's largest - dropped coverage for the operation on Jan. 1.

"The history of obesity, unfortunately," Schwartz said, "is that this is a very vulnerable population that will leap on any bandwagon that comes through."

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The American Society for Bariatric Surgery (bariatric is from the Greek for "weight" and "treatment") had 367 active surgeons in 2000. Four years later, the number had jumped almost fourfold to 1,366.

"The interest from a surgeon's point of view is just going up logarithmically," said Dr. John Snyder, a surgeon in Alaska. "A big feature of it is economics."

Weight-loss surgery is a top-paying specialty. An operation can cost $15,000 to $50,000. Patients often are willing to pay their own way if insurers say no.

And there is no shortage of patients. As many as 9 million U.S. adults are at least 100 pounds overweight, making them big enough right now to qualify for surgery. "We're just barely reaching the tip of the iceberg," said Dr. Norbert Richardson, a St. Louis weight-loss surgeon.

Hospitals have stepped up to meet the demand.

In St. Louis, the NewStart Center at St. Alexius Hospital started out eight years ago competing mainly with just Barnes-Jewish Hospital. While list has grown over the years, NewStart remains busy. Its three surgeons on average perform 43 bariatric operations a month-more than one a day - accounting for nearly 20 percent of all operations at St. Alexius.

Elsewhere, entire hospitals have been turned over to doing just obesity surgery. Chains of bariatric clinics with surgeons flying between them have opened across the country.

One national chain, The Wish Center, offers a $500 referral bonus and recently launched a new ad campaign. One TV spot shows a man talking about the death of his morbidly obese friend Kim, who apparently did not have bariatric surgery: "You see, I have cancer and I'm going to die. Kim, she didn't have to. That's what really kills me."

Some surgeons worry how all of this is changing the profession.

"The surgical field is just shooting itself in the foot," said Dr. Craig Albanese, chief of pediatric surgery at Lucille Packard Children's Hospital in Palo Alto, Calif., which recently began performing gastric bypasses. "These surgery centers and people are cropping up all over. It's basically one big wallet biopsy. I don't call it any more than that. It's deplorable."

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At the same time, at least 10 hospitals in six states have dropped weight-loss surgery programs since 2003. The reasons were varied, and some institutions restarted their programs after overhauls. But the experience shows the risks involved in the rush to get into obesity surgery, critics say.

In June 2004, the University of New Mexico Hospital in Albuquerque shuttered its obesity surgery program, leaving the state without a provider. The move followed at least two patient deaths and subsequent lawsuits.

Iowa Methodist Medical Center in Des Moines stopped doing the surgery in September after seven patients died in recent years. The hospital blamed rising insurance costs for its decision.

In the Macon, Ga., region, one hospital curtailed the surgery and three others stopped doing it, including Coliseum Medical Centers in Macon. It closed its obesity surgery program for good in September. That followed a three-week hiatus in December 2002 after a patient's death. "It shook us up. It concerned us," said Michael Boggs, the hospital's chief executive.

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Despite the field's problems, the surgery's popularity is easy to understand: It does what patients can't. It is a diet enforced by changes to the anatomy.

The most popular method is the Roux-en-Y gastric bypass. Using staples and sutures, surgeons shrink the stomach from the size of a football to a small egg. A portion of the intestinal tract is bypassed. The result: Patients eat less food and absorb less of what they do eat.

Patients tend to lose about two-thirds of their excess weight in the first two years. But few will ever be called thin. "You're not going to come out of this looking like a supermodel," said Dr. Charles Turkelson, chief research analyst at ECRI, an independent health services research company in Plymouth Meeting, Pa.

ECRI last year reviewed more than 70 studies of weight-loss surgery. It found the average patient, a 5-foot-4 woman at 275 pounds, weighed about 190 pounds three years after the operation - still obese, but much less so.

Assuming she survives. One percent to 2 percent of patients die during or shortly after bariatric surgery, according to a health technology assessment published last year. That translates into 1,400 to 2,800 deaths last year. An additional 10 percent to 20 percent of patients develop complications, including life-threatening ones, according to a federal review of multiple studies.

Those risks are worth it, surgery supporters say, considering obesity increases the risk of developing heart problems, cancers and diabetes.

The operation has grown safer since it was first used in the late 1950s. But the procedure required decades of fine-tuning to gain acceptance. In 1991, a federal advisory panel gave its conditional blessing. The panel said the operation could be useful for certain adults more than 100 pounds overweight. Still, the field failed to take off.

Two things changed that. In the mid-1990s, doctors began using laparoscopic tools. The minimally invasive surgical equipment reduced operating risks. Then, in 1999, pop singer Carnie Wilson had her weight-loss surgery broadcast live on the Internet.

Since then, Wilson - like celebrity patient Al Roker of the "Today" show - has become the public face of the operation.

It was Roker's surgery that helped persuade John Henderson, 43, of Du Quoin, Ill., north of Carbondale, to have the operation at the same time as his wife, Rachele, 32. They are thrilled with the results.

"It's like you're finally free," Rachele Henderson said.

When they married in September 2001, she weighed 250 pounds. John Henderson weighed 360. The two of them struggled to get close enough to share a wedding day kiss.

They wanted to change that. John wanted to be free of his diabetes. Rachele wanted to have children, and she knew obesity affects fertility.

Rachele Henderson had a gastric bypass in December 2003 at NewStart. Her husband followed six weeks later.

A year afterward, they talked about their experience over a shared Fisherman's Platter at Joe's Crab Shack in Fairview Heights. She had lost 100 pounds. He was 115 pounds smaller and no longer needed drugs to control his diabetes. They had re-sized their gold wedding bands to fit their smaller fingers. But the rings were loose again.

Now, they can kiss with ease. "And it is wonderful," Rachele Henderson said, beaming.

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From his surgical practice in the isolated environs of Anchorage, Alaska, Snyder has a unique view on obesity surgery.

"Here in Alaska, we're seeing the complications of surgeries done in the lower 48 states," Snyder said in a telephone interview.

Patients who live in Alaska might travel out-of-state for obesity surgery in search of a better price or a particular surgeon. But once problems set in, they have few options. Only three surgeons in the state are affiliated with the bariatric society.

In the past five years, Snyder has worked on 26 patients to correct complications stemming from gastric bypasses done outside Alaska. Snyder doubts the original surgeons ever found out.

"If I'm the surgeon in San Diego and operating on people and shipping them to Wyoming, Oregon or back to Alaska, I probably don't have the foggiest idea that these people are getting complications," said Snyder, 62, who grew up in Hannibal, Mo., and attended medical school at the University of Missouri at Columbia.

Snyder is open about his record as a surgeon. He keeps detailed statistics - the kind of numbers that insurers and the bariatric society would love to see from all obesity surgeons. He can tell you his operating death rate (less than 1 percent) and the complications that developed - from massive blood loss to spleen tears to deep-vein thromboses and hernias.

Snyder suspects that surgeons who don't track this information have their reasons.

"They don't want to take the time and trouble to do it, No. 1," he said. "No. 2, they probably don't want to know the answers."

More study could produce surprising results, Snyder said.

"We really don't know what we're doing. We think we do. But the more you look at it and the more you study it, the more you come to the conclusion that perhaps we really don't know."

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What insurers and doctors fear is a case like Jessica Ostroushko's.

Ostroushko, a mother from Eagan, Minn., had gastric bypass surgery on Dec. 3, 2003, at a major medical center in Minneapolis. She was morbidly obese, weighing more than 316 pounds. She also had a heart condition and her cardiologist thought surgery might help.

Right away she suffered. She had chronic nausea and diarrhea. Dehydrated, she was in and out of the hospital. Her intestines were blocked and her stomach kept filling with fluid. She has been afraid to go back to her original surgeon. Other doctors have refused to treat her. She said she's been told her case is too complicated.

"If I could do it all over again, I wouldn't do it," Ostroushko said in an interview.

Ostroushko has recounted her experiences on a popular online message board run by the Association for Morbid Obesity Support, an advocate for surgery. The day after her one-year surgery anniversary she posted an update: "I was so much better off heavier than I am now. I live my life as an invalid, I cannot take care of my 4-year-old son on my own, my marriage is so strained, we are financially drained, emotionally, I am a wreck, physically, I couldn't be any worse off, unless I was dead."

Her candor has earned her scorn, she said. Some people on the Web site have accused her of scaring people who might benefit from the surgery.

Ostroushko believes others like her have been silenced by similar pressure.

"I am not alone out there," she said.

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Long-term malnutrition may be the most common complication of gastric bypass.

The body changes that hasten weight loss also open the door to frightful problems.

Patients need to take daily vitamins and watch their diet to avoid deficiencies.

Rachele Henderson stopped taking her twice-a-day, vitamin B pill and within weeks noticed three fingers were numb. The numbness spread up her arm. Alarmed, she called her doctor, who ordered her to take her pills and to get a vitamin booster shot. The numbness eventually went away.

Seemingly minor, vitamin deficiencies can morph into fatal complications. For doctors, it presents a quandary: How do you get patients to take their pills?

"They just don't want to do it. It's hard to believe, but it's true," said Dr. Walter Pories, a past president of the bariatric society.

In a study of 435 patients released last year, the Mayo Clinic in Minnesota found that painful nerve damage developed in 16 percent of weight-loss surgery patients - a significant number, according to the study's authors. Symptoms ranged from tingling and numbness to severe pain and weakness that left patients confined to wheelchairs.

The cause of the nerve damage: patients not taking their vitamins.

Study author Dr. James Dyck, associate professor of neurology at the Mayo Clinic, said the findings showed the need for intensive education of patients before and after surgery.

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Last year, the federal government launched its first multisite trial of obesity surgery. The National Institutes of Diabetes and Digestive and Kidney Diseases hopes to learn more about the operation's risks and benefits by studying outcomes at six medical centers over the next four years.

In December, an advisory group to the federal Medicare program delivered an upbeat report on obesity surgery compared to nonsurgical treatments. Now, Medicare is considering paying for the operation, which could further fuel its popularity.

But the scope of the report's findings was relatively narrow, said Paul Shekelle, the report's author and the director of the Southern California-RAND Evidenced-Based Practice Center.

Shekelle said that while the RAND report found surgery was more effective than other tactics for treating the most seriously obese, the same conclusion could not be drawn for people who were less overweight but still morbidly obese. And while the surgery helped resolve some conditions, like diabetes, it was not clear that patients live longer than obese people trying other treatments.

This is a key question. Does surgery extend lives? Many in the obesity surgery field have been eagerly anticipating an answer from the most rigorous, ongoing weight-loss surgery study in the world - the Swedish Obese Subjects study. But the study authors, who published an update in December, have been silent on this matter.

"What I conclude is that there is no statistically meaningful difference," Shekelle said. "If there was a strong difference either way ... we would know it by now."

Dr. Lars Sjostrom, the Swedish study's principal investigator, said in an e-mail that he expected the mortality question to be answered within two years.

Almost nothing is known about whether bariatric surgery has a measurable long-term impact on a patient's quality of life.

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Some states are doing their own studies.

In Massachusetts last year, public health officials ordered a statewide review of the surgery's safety after noticing six deaths in 18 months.

"We recognized the misinformation out there in terms of risk," said Nancy Ridley, director of the state's Betsy Lehman Center for Patient Safety and Medical Error Reduction, which oversaw the inquiry.

In North Carolina, Blue Cross Blue Shield tries guiding customers to the best and most experienced surgeons, something it does for only one other procedure: bone marrow transplants.

In Missouri, most standard plans offered by major insurers exclude weight-loss surgery. Illinois insurers offer a range of coverage.

One of the most thorough surgery shake-ups occurred in Washington state.

It was set off by Dr. Jeffery Thompson, chief medical officer for state Medicare, who was shocked by mortality statistics he received in the summer of 2003.

The 30-day death rate for obesity surgery ranged from zero to 40 percent. In other words, some surgeons were losing four out of every 10 patients.

In August 2003, Thompson ordered an emergency halt to the surgery for his agency's clients. State Medicare then asked for an in-depth analysis of Washington's obesity surgeries. A clear relationship emerged between the number of surgeries a hospital performed and results: Hospitals that did fewer than 10 operations a year had a 12 percent death rate, while hospitals that did more than 100 had a rate of 2 percent.

Coverage was reinstated last March, but with tough new restrictions. Hospitals had to show they could do the surgery safely and follow up with patients on a long-term basis.

The agency also limited who could get the operation, going far beyond the widely adopted federal guidelines. Prospective patients had to be between 21 and 60 years old. Simply being severely obese was not enough. Patients also had to suffer from one of three conditions: diabetes, the need for major joint replacement or a rare weight-related condition like pseudotumor cerebri, which is excessive pressure around the brain.

It was a radical solution. But Thompson justifies it as a way of mediating "a need versus a want" for surgery. "We as the physicians need to understand the needs," he said. "We don't know the answers yet. And when you don't know, you're cautious and conservative."

Even many bariatric surgeons stung by the criticism recognize the field's problems.

Dr. Harvey Sugerman, president of the American Society for Bariatric Surgery, accuses insurers of "doing their darndest" to block access to an operation effective at curing diabetes and perhaps easing other weight-induced conditions. Comparing the risks of bariatric surgery to the dangers of diet pills is ridiculous, he said.

But the bariatric society is moving in the same direction as insurance companies and regulators.

"There are some bad apples out there," Sugerman said. "We've got to clean up our own act."

Last year, the group set up a separate company to certify centers that follow strict guidelines. Those that qualify expect to be designated "Centers of Excellence" later this year.

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Sandy Pierce admits, quietly, that she regrets her decision. She is troubled by the vitamin deficiency that hit her despite her diligence in taking her pills and watching what she eats. "I did everything right," she said. "Why me?"

She still thinks the surgery is good for people who weigh 800 pounds. But too often, she said, she hears from people 80 to 100 pounds overweight who want the operation.

She plans to continue leading her support group. They need her to. "I'm here to educate them and to tell them to take their vitamins and eat the way they're supposed to," Pierce said. "But am I going to encourage them to have the surgery? No."

Pierce had her original operation at a bariatric surgery chain in Ohio. Her surgeon has moved on. She said she never told him about her complications. He probably has no idea.

Now she is considering having one more operation. It would be to reverse her gastric bypass.

"It's great to bop around at size 4 but at what cost?" Pierce said. "It's like this is God's way of saying, `You should've left your anatomy alone.'"

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(c) 2005, St. Louis Post-Dispatch. Distributed by Knight Ridder/Tribune News Service.