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Jul. 15th, 2012 04:17 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
conulyThe Ecology of Disease
THERE’S a term biologists and economists use these days — ecosystem services — which refers to the many ways nature supports the human endeavor. Forests filter the water we drink, for example, and birds and bees pollinate crops, both of which have substantial economic as well as biological value.
If we fail to understand and take care of the natural world, it can cause a breakdown of these systems and come back to haunt us in ways we know little about. A critical example is a developing model of infectious disease that shows that most epidemics — AIDS, Ebola, West Nile, SARS, Lyme disease and hundreds more that have occurred over the last several decades — don’t just happen. They are a result of things people do to nature.
Disease, it turns out, is largely an environmental issue. Sixty percent of emerging infectious diseases that affect humans are zoonotic — they originate in animals. And more than two-thirds of those originate in wildlife.
Teams of veterinarians and conservation biologists are in the midst of a global effort with medical doctors and epidemiologists to understand the “ecology of disease.” It is part of a project called Predict, which is financed by the United States Agency for International Development. Experts are trying to figure out, based on how people alter the landscape — with a new farm or road, for example — where the next diseases are likely to spill over into humans and how to spot them when they do emerge, before they can spread. They are gathering blood, saliva and other samples from high-risk wildlife species to create a library of viruses so that if one does infect humans, it can be more quickly identified. And they are studying ways of managing forests, wildlife and livestock to prevent diseases from leaving the woods and becoming the next pandemic.
It isn’t only a public health issue, but an economic one. The World Bank has estimated that a severe influenza pandemic, for example, could cost the world economy $3 trillion.
The problem is exacerbated by how livestock are kept in poor countries, which can magnify diseases borne by wild animals. A study released earlier this month by the International Livestock Research Institute found that more than two million people a year are killed by diseases that spread to humans from wild and domestic animals.
The Nipah virus in South Asia, and the closely related Hendra virus in Australia, both in the genus of henipah viruses, are the most urgent examples of how disrupting an ecosystem can cause disease. The viruses originated with flying foxes, Pteropus vampyrus, also known as fruit bats. They are messy eaters, no small matter in this scenario. They often hang upside down, looking like Dracula wrapped tightly in their membranous wings, and eat fruit by masticating the pulp and then spitting out the juices and seeds.
The bats have evolved with henipah over millions of years, and because of this co-evolution, they experience little more from it than the fruit bat equivalent of a cold. But once the virus breaks out of the bats and into species that haven’t evolved with it, a horror show can occur, as one did in 1999 in rural Malaysia. It is likely that a bat dropped a piece of chewed fruit into a piggery in a forest. The pigs became infected with the virus, and amplified it, and it jumped to humans. It was startling in its lethality. Out of 276 people infected in Malaysia, 106 died, and many others suffered permanent and crippling neurological disorders. There is no cure or vaccine. Since then there have been 12 smaller outbreaks in South Asia.
In Australia, where four people and dozens of horses have died of Hendra, the scenario was different: suburbanization lured infected bats that were once forest-dwellers into backyards and pastures. If a henipah virus evolves to be transmitted readily through casual contact, the concern is that it could leave the jungle and spread throughout Asia or the world. “Nipah is spilling over, and we are observing these small clusters of cases — and it’s a matter of time that the right strain will come along and efficiently spread among people,” says Jonathan Epstein, a veterinarian with EcoHealth Alliance, a New York-based organization that studies the ecological causes of disease.
That’s why experts say it’s critical to understand underlying causes. “Any emerging disease in the last 30 or 40 years has come about as a result of encroachment into wild lands and changes in demography,” says Peter Daszak, a disease ecologist and the president of EcoHealth.
Emerging infectious diseases are either new types of pathogens or old ones that have mutated to become novel, as the flu does every year. AIDS, for example, crossed into humans from chimpanzees in the 1920s when bush-meat hunters in Africa killed and butchered them.
Diseases have always come out of the woods and wildlife and found their way into human populations — the plague and malaria are two examples. But emerging diseases have quadrupled in the last half-century, experts say, largely because of increasing human encroachment into habitat, especially in disease “hot spots” around the globe, mostly in tropical regions. And with modern air travel and a robust market in wildlife trafficking, the potential for a serious outbreak in large population centers is enormous.
The key to forecasting and preventing the next pandemic, experts say, is understanding what they call the “protective effects” of nature intact. In the Amazon, for example, one study showed an increase in deforestation by some 4 percent increased the incidence of malaria by nearly 50 percent, because mosquitoes, which transmit the disease, thrive in the right mix of sunlight and water in recently deforested areas. Developing the forest in the wrong way can be like opening Pandora’s box. These are the kinds of connections the new teams are unraveling.
Public health experts have begun to factor ecology into their models. Australia, for example, has just announced a multimillion-dollar effort to understand the ecology of the Hendra virus and bats.
IT’S not just the invasion of intact tropical landscapes that can cause disease. The West Nile virus came to the United States from Africa but spread here because one of its favored hosts is the American robin, which thrives in a world of lawns and agricultural fields. And mosquitoes, which spread the disease, find robins especially appealing. “The virus has had an important impact on human health in the United States because it took advantage of species that do well around people,” says Marm Kilpatrick, a biologist at the University of California, Santa Cruz. The pivotal role of the robin in West Nile has earned it the title “super spreader.”
And Lyme disease, the East Coast scourge, is very much a product of human changes to the environment: the reduction and fragmentation of large contiguous forests. Development chased off predators — wolves, foxes, owls and hawks. That has resulted in a fivefold increase in white-footed mice, which are great “reservoirs” for the Lyme bacteria, probably because they have poor immune systems. And they are terrible groomers. When possums or gray squirrels groom, they remove 90 percent of the larval ticks that spread the disease, while mice kill just half. “So mice are producing huge numbers of infected nymphs,” says the Lyme disease researcher Richard Ostfeld.
“When we do things in an ecosystem that erode biodiversity — we chop forests into bits or replace habitat with agricultural fields — we tend to get rid of species that serve a protective role,” Dr. Ostfeld told me. “There are a few species that are reservoirs and a lot of species that are not. The ones we encourage are the ones that play reservoir roles.”
Dr. Ostfeld has seen two emerging diseases — babesiosis and anaplasmosis — that affect humans in the ticks he studies, and he has raised the alarm about the possibility of their spread.
The best way to prevent the next outbreak in humans, specialists say, is with what they call the One Health Initiative — a worldwide program, involving more than 600 scientists and other professionals, that advances the idea that human, animal and ecological health are inextricably linked and need to be studied and managed holistically.
“It’s not about keeping pristine forest pristine and free of people,” says Simon Anthony, a molecular virologist at EcoHealth. “It’s learning how to do things sustainably. If you can get a handle on what it is that drives the emergence of a disease, then you can learn to modify environments sustainably.”
The scope of the problem is huge and complex. Just an estimated 1 percent of wildlife viruses are known. Another major factor is the immunology of wildlife, a science in its infancy. Raina K. Plowright, a biologist at Pennsylvania State University who studies the ecology of disease, found that outbreaks of the Hendra virus in flying foxes in rural areas were rare but were much higher in urban and suburban animals. She hypothesizes that urbanized bats are sedentary and miss the frequent exposure to the virus they used to get in the wild, which kept the infection at low levels. That means more bats — whether from poor nutrition, loss of habitat or other factors — become infected and shed more of the virus into backyards.
THE fate of the next pandemic may be riding on the work of Predict. EcoHealth and its partners — the University of California at Davis, the Wildlife Conservation Society, the Smithsonian Institution and Global Viral Forecasting — are looking at wildlife-borne viruses across the tropics, building a virus library. Most of the work focuses on primates, rats and bats, which are most likely to carry diseases that affect people.
Most critically, Predict researchers are watching the interface where deadly viruses are known to exist and where people are breaking open the forest, as they are along the new highway from the Atlantic to the Pacific across the Andes in Brazil and Peru. “By mapping encroachment into the forest you can predict where the next disease could emerge,” Dr. Daszak, EcoHealth’s president, says. “So we’re going to the edge of villages, we’re going to places where mines have just opened up, areas where new roads are being built. We are going to talk to people who live within these zones and saying, ‘what you are doing is potentially a risk.’ ”
It might mean talking to people about how they butcher and eat bush meat or to those who are building a feed lot in bat habitat. In Bangladesh, where Nipah broke out several times, the disease was traced to bats that were raiding containers that collected date palm sap, which people drank. The disease source was eliminated by placing bamboo screens (which cost 8 cents each) over the collectors.
EcoHealth also scans luggage and packages at airports, looking for imported wildlife likely to be carrying deadly viruses. And they have a program called PetWatch to warn consumers about exotic pets that are pulled out of the forest in disease hot spots and shipped to market.
All in all, the knowledge gained in the last couple of years about emerging diseases should allow us to sleep a little easier, says Dr. Epstein, the EcoHealth veterinarian. “For the first time,” he said, “there is a coordinated effort in 20 countries to develop an early warning system for emerging zoonotic outbreaks.”
For Climbers, Risks Now Shift With Every Step
At 16,400 feet on Mount McKinley, Eric Roche looked toward the summit, still nearly 4,000 feet distant through deep and perilous snow. Then he looked at the picture of his wife and son, mounted on his ice ax and carried through two weeks of climbing. And he changed his mind. He would go home.
“The avalanche risk seemed too great,” he said last week as he unpacked his kit in this small town at the foot of McKinley in south-central Alaska. “I feel good about the decision.”
In climbing lore, coming back down the mountain safely is the ultimate measure of a climber’s success, not the number of summits achieved. And around the world this year, it has been a bad season in that respect. A climbing disaster in the French Alps last week, with nine climbers killed by an avalanche, was only the most recent example.
Scientists, mountaineers and parks managers say it is a pincerlike motion of forces: more people seeking adventure even as the risks involved are becoming more variable.
From a freakish storm in the Great Smoky Mountains in Tennessee that killed two people this month to an avalanche here on McKinley in June that killed four climbers in a place where avalanches are historically less of a worry, the new norm is increasingly the lack of a norm. Patterns of the past can no longer be relied on for guidance.
Since November, at least 34 people in the United States alone have been killed by avalanches, and three of the four worst years for fatalities since 1950 have occurred since 2007, according to the Colorado Avalanche Information Center.
“The extremes are becoming more extreme,” said Tucker Chenoweth, a mountaineering ranger at Denali National Park and Preserve. Mr. Chenoweth trains search and rescue teams on McKinley from the ranger station here in Talkeetna, which oversees the mountain and its expeditions about 60 miles from base camp.
In a strange way, Mr. Chenoweth and other experts said, wild places like McKinley are getting wilder, or at least harder to predict.
Sharper seasonal variations of ice and snow and temperature are being repeated all across the world from the Himalayas to the Andes, which scientists say are driven by a higher level of energy in the atmosphere from global warming. As a result, climbers have to think twice about what they might expect one year to the next, or even one day to the next, in places they might have climbed for decades.
On McKinley, the snows this year have been prodigious, and the four avalanche deaths have tied a record last seen in 1987. And conditions have varied widely. This month, a weather station on the mountain recorded a temperature range from 21 degrees above zero to 13 below over two days, with 21 inches of snow falling in the middle, rare for July.
“The chances of having an average year are very likely going down as climate variability increases,” said Brian Lazar, the executive director of the American Institute for Avalanche Research and Education and a senior scientist at Stratus Consulting, an environmental research company.
Going to the Peruvian Andes in June? By most historical predictors and local memory, it should be dry. “Now it might be, or it might not,” Mr. Lazar said.
Compounding the consequences of that shift is that the biggest changes on the mountain in general are happening not in upper reaches, where the risks and challenges are often greatest from altitude and fatigue, but lower down, where wider temperature swings are creating new stresses on glacial ice and rock.
That is especially true here at McKinley, which is laced by glaciers. And while avalanches are a concern everywhere on the mountain, the four Japanese climbers — two men and two women — were killed far below the areas where slopes are steeper and avalanches often have the worst consequences.
Last year, an ice fall — essentially an avalanche, but made of giant ice blocks rather than snow — surged down the mountain, producing an air blast ahead of it that blew four climbers out of their tents and killed one of them.
Venturing into high and wild places has always carried its dangers, of course. Mountain weather, as even a casual day hiker in the Rockies or the Appalachians knows, is invariably capricious. And as climbers often say, even years of experience are only as good as the next life-or-death decision to be made.
Michael J. Ybarra, a veteran climber and adventure writer, died in a fall while free-climbing in Yosemite National Park this month, and a ranger on Mount Rainier in Washington fell thousands of feet to his death during a rescue in June. In both cases, apparently, a slipped handhold or moment of lost footing was all it took.
But veteran climbers say today’s conditions are combining to create a volatile highball of risk.
“In the past, people saw mountains like McKinley as the apex of their climbing careers, something they built toward for years,” said Brian Okonek, considered the local dean of McKinley climbers, with 20 trips to the summit. “Now they want everything faster, they want to go for the bigger mountains sooner than they used to.”
Colby Coombs, a co-owner of the Alaska Mountaineering School, said he regularly sees people showing up to buy equipment for expeditions who do not have a clue what they are going to face or what equipment they might need.
“They underestimate the severity of the environment and overestimate their own ability,” he said. Many, he said, are particularly unprepared for the brutal cold that can occur even in July this far north, or the sudden storms that can blow in from the Arctic, driving the windchill factor well below zero.
So far this year, only 43 percent of climbers have reached McKinley’s summit, compared with the long-term average of 52 percent.
Some longtime McKinley watchers say changes in the easiest and shortest route — the West Buttress, taken by more than 80 percent of expeditions going up — could ultimately lead to a crisis if trends continue lower down the mountain.
Ice chunks breaking off at a place on the Buttress called Windy Corner, they say, are gradually exposing a sharply steeper and potentially impassable face. The alternative route would require many more miles and days on the mountain, and might add new hazards as well, including a crossing of the McKinley River.
Mr. Roche, 34, a college academic counselor from Wisconsin, said he was not sure whether he would return here someday. But he said he was acutely conscious, both in going up and coming back down, that he was walking in the footsteps of the climbers who died last month.
But he arrived back home on Friday with what he said was a nugget of wisdom, even if the summit was beyond reach. His 2-year-old son, Gus, shouted joyfully in the background as he spoke on the phone.
“Trust your instincts,” Mr. Roche said.
An Infection, Unnoticed, Turns Unstoppable
For a moment, an emergency room doctor stepped away from the scrum of people working on Rory Staunton, 12, and spoke to his parents.
“Your son is seriously ill,” the doctor said.
“How seriously?” Rory’s mother, Orlaith Staunton, asked.
The doctor paused.
“Gravely ill,” he said.
How could that be?
Two days earlier, diving for a basketball at his school gym, Rory had cut his arm. He arrived at his pediatrician’s office the next day, Thursday, March 29, vomiting, feverish and with pain in his leg. He was sent to the emergency room at NYU Langone Medical Center. The doctors agreed: He was suffering from an upset stomach and dehydration. He was given fluids, told to take Tylenol, and sent home.
Partially camouflaged by ordinary childhood woes, Rory’s condition was, in fact, already dire. Bacteria had gotten into his blood, probably through the cut on his arm. He was sliding into a septic crisis, an avalanche of immune responses to infection from which he would not escape. On April 1, three nights after he was sent home from the emergency room, he died in the intensive care unit. The cause was severe septic shock brought on by the infection, hospital records say.
Because sepsis, a leading cause of death in hospitals, can at first look like less serious ailments, a campaign to aggressively identify it for early treatment has been undertaken by a consortium of 55 hospitals in the New York region, including NYU Langone.
Yet nowhere along Rory’s journey, from boy with a bellyache on Thursday to gravely ill boy on Friday night, did anyone act on strong indications that he might be fighting for his life. Critical information gathered by his family doctor and during his first visit to NYU Langone was not used, was not at hand or was not viewed as important when decisions were made about his care, records show.
Moments after an emergency room doctor ordered Rory’s discharge believing fluids had made him better, his vital signs, recorded while still at the hospital, suggested that he could be seriously ill. Even more pointed signals emerged three hours later, when the Stauntons were at home: the hospital’s laboratory reported that Rory was producing vast quantities of cells that combat bacterial infection, a warning that sepsis could be on the horizon.
The Stauntons knew nothing of his weak vital signs or abnormal lab results.
“Nobody said anything that night,” Ms. Staunton said. “None of you followed up the next day on that kid, and he’s at home, dying on the couch?”
NYU Langone declined to discuss any aspects of Rory’s care or hospital procedures.
“Our deepest sympathies go out to the family at this difficult time,” said Lisa Greiner, a hospital spokeswoman.
The Stauntons shared Rory’s medical records with a reporter for The New York Times who had met the boy last summer in a social setting. A full airing of the case, along with a commitment to reforms, his parents said, could save lives. They have hired a lawyer, Thomas A. Moore, but have not decided how they will proceed.
•
Rory Staunton, 5 feet 9 inches tall and 169 pounds, was big for his age and a student of the world. “The most profound 12-year-old I had ever met,” his debate coach, Kevin Burgoyne, said. For his birthday, his parents gave him flying lessons after Rory, who spent hours on a flight simulator, tracked down an aviation school that accepted students at 12. He devoured the memoir of Chesley B. Sullenberger III, the pilot who safely brought down an airliner on the Hudson River.
“I told him, ‘Sully did some fast math landing that plane,’ and for a short while, he was paying attention to math,” said Ciaran Staunton, Rory’s father. “Then he came back with, ‘Yeah, but by the time I’m a pilot they’ll have a faster way of doing it.’ ”
Rory and his sister, Kathleen, 10, grew up in Sunnyside Gardens, Queens, which their parents, Irish immigrants, regarded as a global village of sublime pleasures: shared courtyards, a rich brew of cultures and merry mobs of children rolling from house to house. Ms. Staunton, the former director of an international student exchange, said neighborhood kids formed their own country, Kidadelphia, designed a flag, and adapted the United States motto for their slogan: “In God and Fun We Trust.” Rory was president. When he was 8, he raided his piggy bank to treat his parents to a Chinese dinner for their wedding anniversary. At the private Garden School in Jackson Heights, he was elected to the student council in seventh grade and led a campaign, Spread the Word to End the Word, to curtail the casual, derogatory use of the term “retarded.”
Last summer, his uncle, a friend of mine, brought Rory, Kathleen and their mother to stay in my family’s vacation home for two nights. Rory would go from barreling down a water slide backward to sizing up President Obama’s prospects for re-election. Fascinated by North Korea, he tried to fathom how a country so afflicted by famine could afford a large army. (His parents recently found a note in his computer to the Swedish ambassador to North Korea.)
At home, said Mr. Staunton, a civic activist and bar owner, they would have nightly shouting matches over homework Rory had not done or dirty clothes he had not picked up, in between scoping out corners of global history.
During gym class on Wednesday, March 28, he dived for a ball and opened a cut on his arm. That night, Ms. Staunton said, Rory mentioned it: “How he presented it to me was, ‘I fell in the gym. Mr. D, the athletic director, put the Band-Aids on. And, I got the ball.’ ”
Then he finished his homework and went to bed.
•
The bacteria Streptococcus pyogenes is part of the human ecosystem, normally dwelling in the throat or on the skin, areas where the body is well defended. Also known as Group A streptococcus, the strain typically causes strep throat or impetigo.
But if it is able to penetrate soft tissue or blood, “it moves very quickly,” said Dr. Michael B. Edmond, the chairman of the division of infectious diseases at Virginia Commonwealth University. “The mortality rate is high. The clinical findings early in the infection can be relatively subtle.”
The challenge for physicians is recognizing an invasive infection, whether from Group A strep or other pathogens, before the cascading damage of sepsis has picked up too much speed. The consortium of New York hospitals has a goal of starting antibiotics within an hour of spotting sepsis in the emergency room, according to officials with the Greater New York Hospital Association’s Stop Sepsis program.
For every hour’s delay in giving antibiotics after very low blood pressure had set in, a study found, the survival rate decreased by 7.6 percent.
•
Shortly after midnight on March 29, Ms. Staunton heard Rory retching in the bathroom. “There wasn’t a huge amount of vomit, but he kept saying, ‘My leg, my leg, Mom,’ ” she recalled. Back in bed, he moaned. His mother rubbed his thigh. In the morning, he was weak, his leg still hurt, and his temperature was 104 degrees, his highest ever.
The parents began calling Dr. Susan Levitzky, who had been the family pediatrician for about five years. She saw Rory that evening.
“He was leaning on me as we were walking up to the office, because he could hardly stand from the weakness or pain in his leg,” Ms Staunton said. In the waiting room, Rory vomited. When the doctor swabbed his throat, he vomited on her. The swab test, a rapid but not definitive detector of strep, was negative.
“We showed her the cut on his elbow, and I saw her follow up his arm from the cut,” Ms. Staunton said. “She said, ‘The cut’s not an issue.’ She focused on his stomach. We said, ‘Although you see him throwing up, that’s not what he’s really complaining about.’ Rory and I both said to her that it’s the pain in his leg that’s really bothering him.”
The doctor told them that the leg pain might be from falling in the gym. “Rory said, ‘It wasn’t a fall, it was a skid,’ ” Ms. Staunton recalled.
The parents also remarked that Rory’s skin became blotchy when they pressed a finger on it. Those concerns were well-founded, said Dr. Edmond, the infectious disease specialist, who was not involved in Rory’s care: The mottling, which Dr. Levitzky made note of, could mean that vessels in his skin were constricting from low blood pressure; the leg pain could mean an invasive infection. Rory’s temperature was 102 and his pulse was 140; he was taking 36 breaths a minute. These, too, were “worrisome” observations, Dr. Edmond said.
Nevertheless, Ms. Staunton said, she did not recall being told that any of his vital signs were off: “She said, ‘Make your way over to NYU, and get him rehydrated. He’s vomiting now. He’s going to feel better, and tomorrow, he’ll have diarrhea.’ ”
In a brief phone conversation, Dr. Levitzky said she could not discuss the case. “I sent him to a major medical center,” she said.
•
Rory arrived at NYU Langone, on First Avenue near 34th Street, at 7:14 that evening and was discharged about two hours later. Hospital records do not reflect any communication with Dr. Levitzky or her findings about the mottled skin.
Like Dr. Levitzky, the NYU physicians believed that Rory’s discomfort was caused by a sick stomach and dehydration. His chart states that “labs, IVF, Zofran” were ordered. Zofran is an antinausea drug; two bags of intravenous fluids, or IVF, were administered; three vials of blood were drawn and sent to the hospital laboratory.
“They did the various checks, up, down, back and forth,” Mr. Staunton said.
A screening tool in the Stop Sepsis program, used when a patient first arrives in the emergency room, calls special attention to a person with three symptoms of a possible eight. At the hospital, Rory showed two: he was breathing 20 times per minute and his pulse was 143.
Two hours later, though, he had three: his temperature had risen to 102, his pulse was 131 and his respiration rate was 22. But by the time those vital signs were recorded, at 9:26 p.m., they had no bearing on his treatment. In fact, the doctor had already decided that Rory was going home. Rory’s “ExitCare” instructions, signed by his father, were printed 12 minutes before those readings.
To the pediatrician who examined and discharged Rory, it seemed that the fluids had done the trick. “Pt improved,” the doctor, Camille Scribner, wrote, prescribing “home supportive care.” There is no sign in the records that Dr. Scribner, described by a senior colleague as “hyper-conscientious,” considered alternative explanations.
“They stated that it was a common flu that was going around,” Mr. Staunton said. “It would start off as high temperature and throwing up, and would end up as diarrhea.”
Dr. Scribner could not be reached for comment through the hospital.
As the Stauntons walked Rory onto First Avenue, the air temperature was in the mid-40s. “He was freezing,” Ms. Staunton said. “He took my coat leaving the hospital. It has a little frilly thing around the collar.”
“Not a thing that a boy of 12 would put on,” Mr. Staunton said.
•
About three hours later, Rory’s lab results were printed. He was producing neutrophils and bands, white blood cells, at rates that were “very abnormal and would suggest a serious bacterial infection,” Dr. Edmond said.
The Stauntons said they heard nothing about it. In bed, Rory “was groaning in his sleep,” Ms. Staunton said. “I felt the heat of the fever.”
At 10 a.m. on Friday, the Stauntons began calling their pediatrician, Dr. Levitzky. “She told us to do a combination of Tylenol and Motrin,” Ms. Staunton said.
Asked last month about the lab findings, Dr. Levitzky, who is associated with NYU Langone, said, “I never knew that testing was done.”
Rory did have the predicted bout of diarrhea on Friday, which momentarily elated his family. Still, he could barely get to the bathroom. The doctor suggested fluids and crackers.
“‘I told her, ‘I’m not sure you’re getting the picture, Dr. Levitzky,’ ” Mr. Staunton said. “‘I can’t even get him to sit up. I don’t know how you expect me to get food into him.’ ”
Later, a slight touch would make him scream. “Around his nose was gone blue,” Mr. Staunton said. “Down his body side was gone blue.”
At that point, Dr. Levitzky told them to return to the emergency room. They supported him as he walked to the car. “All he said was, ‘Can I please have a wheelchair when I get there?’ ” Ms. Staunton recalled.
In the intensive care unit, his parents tried to mask their worry, Mr. Staunton chatting lightly. But Ms. Staunton noticed her son’s eyes following her. “He said, ‘Mom, my toes are really, really cold,’ ” she said.
After extending an arm for blood to be drawn, “he thanked them when they were finished,” Ms. Staunton said.
He had to be put on a ventilator. Just before he was sedated, Ms. Staunton said, “They told him, ‘We need to figure some stuff out. There are some marks on your body, and you need a little bit of help breathing, so we’re just going to intubate you and it’ll be fine.’ ” First, though, they checked his mental status.
“Do you know what date it is?”
“I know it’s March,” Rory answered.
“Who’s the president of the United States?”
He answered: “Barack Obama.”
His mother smiled.
“Ah,” she said, “but Rory, who is going to be the next one?”
“Barack Obama,” he said.
As the next two days passed, doctors tried anything that might halt the shutdown of Rory’s organs. “I can’t say enough about the I.C.U.,” Ms. Staunton said.
Relatives and a priest gathered bedside, talking of Irish football and tomfoolery and politics. Perhaps, one doctor whispered in a fleeting, hopeful aside, Rory might get away with losing his toes and nose. His skin blackened. He passed no urine. His blood would not clot. His heart had to be restarted twice. Three specialists who chronicled Rory’s decline on his intensive care chart each noted that on Thursday night, when he was sent home from the emergency room, he had a fever and significant signs of infection in his blood.
On Sunday night, Dr. Mayer Sagy, who had not seen Rory on his first visit to the hospital but spent the weekend struggling to keep him alive, told the Stauntons that the team had been unable to resuscitate him a third time.
“I said to him, ‘I brought him here to you the other night and you sent him home,’ ” Ms. Staunton said.
“He said, ‘You have every right to be angry.’ ”
More than anything, the Stauntons said, NYU Langone owes an honest accounting of what happened. Racked with loss, they and others remembered Rory as an unflinching champion of schoolyard underdogs.
“Above all,” Ms. Staunton said, “we know that Rory would want no other child to go through what he went through.”
A Bison So Rare It’s Sacred
If one were asked to pick a typical home where the buffalo roam, the answer probably would not be Litchfield County amid the rolling hills and understated rural chic of Northwest Connecticut.
But when Bison No. 7 on Peter Fay’s farm gave birth to a white, 30-pound bull calf a month ago, it made the Fay farm below Mohawk Mountain, for the moment at least, the unlikely epicenter of the bison universe.
For Mr. Fay, what happened was an astoundingly unexpected oddity — white bison are so rare that each birth is viewed as akin to a historic event.
For Marian White Mouse of Wanblee, S.D., and other American Indians, it is a supremely auspicious message from the spirits. She will fly with her family to Connecticut for naming ceremonies at the end of the month that are expected to draw large crowds.
And for those to whom the bison is an iconic part of the American experience, the birth is, at the least, a remarkable coincidence, coming at a time that wildlife, tribal and producer groups are lobbying Congress to have the bison officially designated as the national mammal and a national symbol alongside the bald eagle. (The words buffalo and bison are often used interchangeably, but the North American version is properly called bison and its distant cousins in Asia and Africa are buffaloes).
Mr. Fay, who has an elaborate bison tattoo on his right shoulder and another above his heart, comes from four generations of dairy farmers and makes his living through an excavating and rock-crushing business. He began raising bison as a hobby four years ago, capitalizing on a growing appetite for bison as a leaner alternative to beef, and then became increasingly excited about the animals, building his herd to more than 40 until he sold off about half of them two months ago.
“They’re awesome animals, wild, not domesticated,” Mr. Fay said. “You think of them in South Dakota, where it’s a desert and hot in the summer and bitterly cold in the winter. They don’t mind either one. And they don’t get sick. They’re not like a cow. They’re very hardy. They can deal with anything.”
Mr. Fay, 53, said he was watching a female preparing to give birth on June 16 when he realized a second one was about to give birth as well.
“I was watching and watching and when the second one hit the ground, it was white,” Mr. Fay said. “I don’t know if you’ve ever seen an animal born, but they’re wet. So you don’t see much until the mom dries it off, but once it stood up to nurse, and it was right next to the other one, it looked like a ghost.”
Mr. Fay said his Indian friends had told him that a white bison was considered the most sacred thing imaginable — its birth viewed as something like the Second Coming.
Mr. Fay said he carefully researched the bloodlines of the calf’s mother and father, and he is confident the animal is all bison without any intermingling with cattle. But to be certain, he has sent its DNA for testing. Keith Aune, senior conservation scientist with the Wildlife Conservation Society, said some white bison are albinos and have difficulty thriving in the wild because they lack the black skin that absorbs sunlight during harsh winters.
Mrs. White Mouse, a member of the Oglala Lakota people, said a white bison was believed to be a manifestation of the White Buffalo Calf Maiden, or Ptesan Wi. She is revered as a prophet, who in a time of famine taught the Lakotas seven sacred rituals and gave them their most important symbol of worship, the sacred pipe.
“They are very rare, and when a white bison is born there is a reason for each one to be here,” Mrs. White Mouse said. “It’s such a blessing for someone to take care of a bison like Peter Fay will. I told him when it was born, ‘You don’t even know what you have on your hands here.’ ”
Mr. Fay said he was getting the idea, and being very careful. A white bison in Texas was slaughtered a year ago in what some believed could be an anti-Indian hate crime. Mr. Fay said either he or someone else watched the field day and night. He said that he was prepared for what could be four days of festivities, with the naming ceremony scheduled for July 28, and that he had no interest in selling the bison.
Experts have said one in 10 million bison are white, but a few other white bison births in recent years suggest the rate is somewhat higher.
There were once perhaps 40 million bison roaming wild in the United States. They were hunted to near extinction and have had something of a resurgence both because of conservation efforts in the West and commercial demand; there are now about 500,000 in the country.
Less than a month before this bison was born, the National Bison Legacy Act was introduced in the Senate. The act would designate the American bison as the “National Mammal of the United States.” (There has never been a national mammal.) It has 15 co-sponsors, including the two senators from Connecticut, and an upbeat Web site, votebison.org, though its prospects for passage are unclear.
Mr. Fay said he believed the Indian teachings about the animals, though he found it hard to tie the birth to any one event.
Still, he said: “I think it’s not coincidence that all this stuff is happening. The more you get involved with Native Americans, the more you see it’s a good thing that it’s happening. The country is now in pretty sad shape, so you never know what can help. But for now, I’m just trying to learn about it.”
Conflict Potential Seen in Genetic Counselors Paid by Testing Companies
Genetic testing raises some vexing ethical questions, like whether it will cause unnecessary anxiety or lead to more medical procedures, including abortions.
Now, as the number of tests and the money to be made from them are exploding, another question is being asked by professionals in the field themselves. Is it ethical for genetic counselors, who advise patients on whether to undergo testing, to be paid by the companies that perform the tests?
While it might not always be immediately obvious to patients, some counselors offering them advice in hospitals and doctors’ offices work for the commercial genetic testing companies, not for the hospitals or doctors themselves.
Critics say the arrangement poses a potential conflict of interest, in that the company-employed counselors might have an incentive to recommend more testing than necessary or not to recommend a test offered by a rival laboratory. The practice, they contend, could undermine trust in the profession just as genetic counselors are poised to play a growing role in medicine, helping patients sift through an ever-increasing array of available genetic tests.
“Ultimately, the success of a corporate lab depends on the utilization of their tests, and therefore, so too does the job security of the genetic counselor,” Katie Stoll, a genetic counselor at the Madigan Health Care System, a government medical center in Tacoma, Wash., wrote recently on the DNA Exchange, a Web site for genetic counselors. Ms. Stoll said she worried that in some cases “the line between genetic counselor and sales representative is blurred.”
There are genetic tests for more than 2,500 diseases, up from fewer than 800 diseases in 2001, according to GeneTests, a database supported by the federal government. UnitedHealth, the big insurer, recently projected that spending on genetic testing in the United States would grow to as much as $25 billion in 2012, up from $5 billion in 2010.
Some leaders in the genetic counseling profession say that testing companies have supplied counselors to medical practices for more than 10 years with no evidence that patients have been harmed.
“I’ve never heard it being raised as a real issue in the quality of patient care,” said MaryAnn W. Campion, director of the master’s program in genetic counseling at Boston University.
Doctors who defend the arrangement say that they cannot afford to hire counselors on their own because reimbursement for counseling is low.
While Medicaid, Medicare and private insurers often pay for genetic tests, they are less likely to pay for the counseling sessions, sometimes lasting an hour or longer, that can precede and follow such testing. Most states do not license genetic counselors, and it can be hard for a nonlicensed practitioner to obtain reimbursement.
But testing companies can subsidize the typical $65,000 annual salary of the genetic counselors from testing revenues.
“The problem is that genetic counseling is a time-consuming, labor-intensive process that fundamentally is a money loser,” said Dr. Mark I. Evans, director of Comprehensive Genetics, a Manhattan practice dealing with high-risk pregnancies.
While Dr. Evans employs his own counselors, he said the use of company-employed counselors “allows patients who would not get access to this information to have it.”
About 9 percent of the nation’s approximately 3,000 genetic counselors now work for testing laboratories, up from 2 percent in 1990, according to the National Society of Genetic Counselors. However, the society estimates that only one-third of those directly counsel patients, with many others advising only doctors.
The company most known for placing counselors inside hospitals and medical offices is Genzyme Genetics, which was acquired by LabCorp in 2010 and renamed Integrated Genetics. Integrated Genetics says it has about 140 counselors offering services at 200 locations. These counselors deal primarily with prenatal testing.
Stephen Anderson, a spokesman for LabCorp, said the counseling was part of the testing service and that counselors were not compensated based on how many tests were ordered.
“Genetic counselors are not sales people,” he said “Our counselors are trained professionals that are looking to provide appropriate care, period.”
Mr. Anderson said doctors and hospitals using the counselors were not required to send samples to LabCorp.
Still, some doctors and executives in the testing business say LabCorp needs a certain volume of testing to justify placing a counselor in a doctor’s office. And the genetic testing industry certainly perceives that those counselors help bring testing to LabCorp.
Another testing company, Bio-Reference Laboratories, recently started hiring its own counselors to place in prenatal medical practices. “You can’t compete if you don’t go in and do it,” said Dr. Marc D. Grodman, chief executive.
Many genetic counselors say there is little risk for patients since genetic counselors are trained to discuss options with patients but not to make recommendations. Also, there are guidelines from medical societies as to which tests are appropriate.
Doctors who use the LabCorp counselors say that the counselors disclose the relationship to patients and bill patients separately. Also, some doctors say, they order the tests, not the counselors.
“I order a test because I want to order a test, not because they do,” said Dr. Lawrence Platt, director of the Center for Fetal Medicine and Women’s Ultrasound in Los Angeles. He said LabCorp paid rent to the practice for the space occupied by the counselors.
Still the American College of Obstetricians and Gynecologists, in an opinion published in 2008, stated that neutral counseling “may be compromised through the use of patient education material or counselors that are provided by a company that might profit from a patient’s decision to undergo testing.”
Dr. Richard Fischer, chairman of maternal fetal medicine at Cooper University Hospital in Camden, N.J., while saying he was pleased over all with the LabCorp counselors, said that he to resist the company’s counselors to offer a test to all pregnant women that was not recommended by ACOG.
Dr. Cathleen Harris of Scottsdale Perinatal Associates in Arizona said that after discussions with LabCorp, she opted not to use its counselors “in part because we didn’t want to have an exclusive agreement with them for all our lab tests.”
Kara Murphy of Fanwood, N.J., saw a Genzyme counselor after an ultrasound at a hospital suggested something might be wrong with her fetus. She said she thought the counselor worked for the hospital.
“Even if she handed me a card that said Genzyme on it, I have no idea what Genzyme is,” Ms. Murphy recalled. The counselor discussed numerous testing options, which Ms. Murphy said would have cost her $2,500 out of pocket, and, in retrospect, would not have found what was wrong.
She eventually went to Elena Ashkinadze, a genetic counselor at the Robert Wood Johnson Medical School and president of the Human Genetics Association of New Jersey. Ms. Ashkinadze, after ordering tests from various labs that cost Ms. Murphy $600 out of pocket, figured out the rare disease Ms. Murphy’s son would have.
Ms. Ashkinadze said it was not clear if Ms. Murphy had received bad advice from the Genzyme counselor. But Ms. Ashkinadze said having testing companies provide such advice could raise suspicions among patients. “We shouldn’t be pawns in the marketing scheme,” she said.
THERE’S a term biologists and economists use these days — ecosystem services — which refers to the many ways nature supports the human endeavor. Forests filter the water we drink, for example, and birds and bees pollinate crops, both of which have substantial economic as well as biological value.
If we fail to understand and take care of the natural world, it can cause a breakdown of these systems and come back to haunt us in ways we know little about. A critical example is a developing model of infectious disease that shows that most epidemics — AIDS, Ebola, West Nile, SARS, Lyme disease and hundreds more that have occurred over the last several decades — don’t just happen. They are a result of things people do to nature.
Disease, it turns out, is largely an environmental issue. Sixty percent of emerging infectious diseases that affect humans are zoonotic — they originate in animals. And more than two-thirds of those originate in wildlife.
Teams of veterinarians and conservation biologists are in the midst of a global effort with medical doctors and epidemiologists to understand the “ecology of disease.” It is part of a project called Predict, which is financed by the United States Agency for International Development. Experts are trying to figure out, based on how people alter the landscape — with a new farm or road, for example — where the next diseases are likely to spill over into humans and how to spot them when they do emerge, before they can spread. They are gathering blood, saliva and other samples from high-risk wildlife species to create a library of viruses so that if one does infect humans, it can be more quickly identified. And they are studying ways of managing forests, wildlife and livestock to prevent diseases from leaving the woods and becoming the next pandemic.
It isn’t only a public health issue, but an economic one. The World Bank has estimated that a severe influenza pandemic, for example, could cost the world economy $3 trillion.
The problem is exacerbated by how livestock are kept in poor countries, which can magnify diseases borne by wild animals. A study released earlier this month by the International Livestock Research Institute found that more than two million people a year are killed by diseases that spread to humans from wild and domestic animals.
The Nipah virus in South Asia, and the closely related Hendra virus in Australia, both in the genus of henipah viruses, are the most urgent examples of how disrupting an ecosystem can cause disease. The viruses originated with flying foxes, Pteropus vampyrus, also known as fruit bats. They are messy eaters, no small matter in this scenario. They often hang upside down, looking like Dracula wrapped tightly in their membranous wings, and eat fruit by masticating the pulp and then spitting out the juices and seeds.
The bats have evolved with henipah over millions of years, and because of this co-evolution, they experience little more from it than the fruit bat equivalent of a cold. But once the virus breaks out of the bats and into species that haven’t evolved with it, a horror show can occur, as one did in 1999 in rural Malaysia. It is likely that a bat dropped a piece of chewed fruit into a piggery in a forest. The pigs became infected with the virus, and amplified it, and it jumped to humans. It was startling in its lethality. Out of 276 people infected in Malaysia, 106 died, and many others suffered permanent and crippling neurological disorders. There is no cure or vaccine. Since then there have been 12 smaller outbreaks in South Asia.
In Australia, where four people and dozens of horses have died of Hendra, the scenario was different: suburbanization lured infected bats that were once forest-dwellers into backyards and pastures. If a henipah virus evolves to be transmitted readily through casual contact, the concern is that it could leave the jungle and spread throughout Asia or the world. “Nipah is spilling over, and we are observing these small clusters of cases — and it’s a matter of time that the right strain will come along and efficiently spread among people,” says Jonathan Epstein, a veterinarian with EcoHealth Alliance, a New York-based organization that studies the ecological causes of disease.
That’s why experts say it’s critical to understand underlying causes. “Any emerging disease in the last 30 or 40 years has come about as a result of encroachment into wild lands and changes in demography,” says Peter Daszak, a disease ecologist and the president of EcoHealth.
Emerging infectious diseases are either new types of pathogens or old ones that have mutated to become novel, as the flu does every year. AIDS, for example, crossed into humans from chimpanzees in the 1920s when bush-meat hunters in Africa killed and butchered them.
Diseases have always come out of the woods and wildlife and found their way into human populations — the plague and malaria are two examples. But emerging diseases have quadrupled in the last half-century, experts say, largely because of increasing human encroachment into habitat, especially in disease “hot spots” around the globe, mostly in tropical regions. And with modern air travel and a robust market in wildlife trafficking, the potential for a serious outbreak in large population centers is enormous.
The key to forecasting and preventing the next pandemic, experts say, is understanding what they call the “protective effects” of nature intact. In the Amazon, for example, one study showed an increase in deforestation by some 4 percent increased the incidence of malaria by nearly 50 percent, because mosquitoes, which transmit the disease, thrive in the right mix of sunlight and water in recently deforested areas. Developing the forest in the wrong way can be like opening Pandora’s box. These are the kinds of connections the new teams are unraveling.
Public health experts have begun to factor ecology into their models. Australia, for example, has just announced a multimillion-dollar effort to understand the ecology of the Hendra virus and bats.
IT’S not just the invasion of intact tropical landscapes that can cause disease. The West Nile virus came to the United States from Africa but spread here because one of its favored hosts is the American robin, which thrives in a world of lawns and agricultural fields. And mosquitoes, which spread the disease, find robins especially appealing. “The virus has had an important impact on human health in the United States because it took advantage of species that do well around people,” says Marm Kilpatrick, a biologist at the University of California, Santa Cruz. The pivotal role of the robin in West Nile has earned it the title “super spreader.”
And Lyme disease, the East Coast scourge, is very much a product of human changes to the environment: the reduction and fragmentation of large contiguous forests. Development chased off predators — wolves, foxes, owls and hawks. That has resulted in a fivefold increase in white-footed mice, which are great “reservoirs” for the Lyme bacteria, probably because they have poor immune systems. And they are terrible groomers. When possums or gray squirrels groom, they remove 90 percent of the larval ticks that spread the disease, while mice kill just half. “So mice are producing huge numbers of infected nymphs,” says the Lyme disease researcher Richard Ostfeld.
“When we do things in an ecosystem that erode biodiversity — we chop forests into bits or replace habitat with agricultural fields — we tend to get rid of species that serve a protective role,” Dr. Ostfeld told me. “There are a few species that are reservoirs and a lot of species that are not. The ones we encourage are the ones that play reservoir roles.”
Dr. Ostfeld has seen two emerging diseases — babesiosis and anaplasmosis — that affect humans in the ticks he studies, and he has raised the alarm about the possibility of their spread.
The best way to prevent the next outbreak in humans, specialists say, is with what they call the One Health Initiative — a worldwide program, involving more than 600 scientists and other professionals, that advances the idea that human, animal and ecological health are inextricably linked and need to be studied and managed holistically.
“It’s not about keeping pristine forest pristine and free of people,” says Simon Anthony, a molecular virologist at EcoHealth. “It’s learning how to do things sustainably. If you can get a handle on what it is that drives the emergence of a disease, then you can learn to modify environments sustainably.”
The scope of the problem is huge and complex. Just an estimated 1 percent of wildlife viruses are known. Another major factor is the immunology of wildlife, a science in its infancy. Raina K. Plowright, a biologist at Pennsylvania State University who studies the ecology of disease, found that outbreaks of the Hendra virus in flying foxes in rural areas were rare but were much higher in urban and suburban animals. She hypothesizes that urbanized bats are sedentary and miss the frequent exposure to the virus they used to get in the wild, which kept the infection at low levels. That means more bats — whether from poor nutrition, loss of habitat or other factors — become infected and shed more of the virus into backyards.
THE fate of the next pandemic may be riding on the work of Predict. EcoHealth and its partners — the University of California at Davis, the Wildlife Conservation Society, the Smithsonian Institution and Global Viral Forecasting — are looking at wildlife-borne viruses across the tropics, building a virus library. Most of the work focuses on primates, rats and bats, which are most likely to carry diseases that affect people.
Most critically, Predict researchers are watching the interface where deadly viruses are known to exist and where people are breaking open the forest, as they are along the new highway from the Atlantic to the Pacific across the Andes in Brazil and Peru. “By mapping encroachment into the forest you can predict where the next disease could emerge,” Dr. Daszak, EcoHealth’s president, says. “So we’re going to the edge of villages, we’re going to places where mines have just opened up, areas where new roads are being built. We are going to talk to people who live within these zones and saying, ‘what you are doing is potentially a risk.’ ”
It might mean talking to people about how they butcher and eat bush meat or to those who are building a feed lot in bat habitat. In Bangladesh, where Nipah broke out several times, the disease was traced to bats that were raiding containers that collected date palm sap, which people drank. The disease source was eliminated by placing bamboo screens (which cost 8 cents each) over the collectors.
EcoHealth also scans luggage and packages at airports, looking for imported wildlife likely to be carrying deadly viruses. And they have a program called PetWatch to warn consumers about exotic pets that are pulled out of the forest in disease hot spots and shipped to market.
All in all, the knowledge gained in the last couple of years about emerging diseases should allow us to sleep a little easier, says Dr. Epstein, the EcoHealth veterinarian. “For the first time,” he said, “there is a coordinated effort in 20 countries to develop an early warning system for emerging zoonotic outbreaks.”
For Climbers, Risks Now Shift With Every Step
At 16,400 feet on Mount McKinley, Eric Roche looked toward the summit, still nearly 4,000 feet distant through deep and perilous snow. Then he looked at the picture of his wife and son, mounted on his ice ax and carried through two weeks of climbing. And he changed his mind. He would go home.
“The avalanche risk seemed too great,” he said last week as he unpacked his kit in this small town at the foot of McKinley in south-central Alaska. “I feel good about the decision.”
In climbing lore, coming back down the mountain safely is the ultimate measure of a climber’s success, not the number of summits achieved. And around the world this year, it has been a bad season in that respect. A climbing disaster in the French Alps last week, with nine climbers killed by an avalanche, was only the most recent example.
Scientists, mountaineers and parks managers say it is a pincerlike motion of forces: more people seeking adventure even as the risks involved are becoming more variable.
From a freakish storm in the Great Smoky Mountains in Tennessee that killed two people this month to an avalanche here on McKinley in June that killed four climbers in a place where avalanches are historically less of a worry, the new norm is increasingly the lack of a norm. Patterns of the past can no longer be relied on for guidance.
Since November, at least 34 people in the United States alone have been killed by avalanches, and three of the four worst years for fatalities since 1950 have occurred since 2007, according to the Colorado Avalanche Information Center.
“The extremes are becoming more extreme,” said Tucker Chenoweth, a mountaineering ranger at Denali National Park and Preserve. Mr. Chenoweth trains search and rescue teams on McKinley from the ranger station here in Talkeetna, which oversees the mountain and its expeditions about 60 miles from base camp.
In a strange way, Mr. Chenoweth and other experts said, wild places like McKinley are getting wilder, or at least harder to predict.
Sharper seasonal variations of ice and snow and temperature are being repeated all across the world from the Himalayas to the Andes, which scientists say are driven by a higher level of energy in the atmosphere from global warming. As a result, climbers have to think twice about what they might expect one year to the next, or even one day to the next, in places they might have climbed for decades.
On McKinley, the snows this year have been prodigious, and the four avalanche deaths have tied a record last seen in 1987. And conditions have varied widely. This month, a weather station on the mountain recorded a temperature range from 21 degrees above zero to 13 below over two days, with 21 inches of snow falling in the middle, rare for July.
“The chances of having an average year are very likely going down as climate variability increases,” said Brian Lazar, the executive director of the American Institute for Avalanche Research and Education and a senior scientist at Stratus Consulting, an environmental research company.
Going to the Peruvian Andes in June? By most historical predictors and local memory, it should be dry. “Now it might be, or it might not,” Mr. Lazar said.
Compounding the consequences of that shift is that the biggest changes on the mountain in general are happening not in upper reaches, where the risks and challenges are often greatest from altitude and fatigue, but lower down, where wider temperature swings are creating new stresses on glacial ice and rock.
That is especially true here at McKinley, which is laced by glaciers. And while avalanches are a concern everywhere on the mountain, the four Japanese climbers — two men and two women — were killed far below the areas where slopes are steeper and avalanches often have the worst consequences.
Last year, an ice fall — essentially an avalanche, but made of giant ice blocks rather than snow — surged down the mountain, producing an air blast ahead of it that blew four climbers out of their tents and killed one of them.
Venturing into high and wild places has always carried its dangers, of course. Mountain weather, as even a casual day hiker in the Rockies or the Appalachians knows, is invariably capricious. And as climbers often say, even years of experience are only as good as the next life-or-death decision to be made.
Michael J. Ybarra, a veteran climber and adventure writer, died in a fall while free-climbing in Yosemite National Park this month, and a ranger on Mount Rainier in Washington fell thousands of feet to his death during a rescue in June. In both cases, apparently, a slipped handhold or moment of lost footing was all it took.
But veteran climbers say today’s conditions are combining to create a volatile highball of risk.
“In the past, people saw mountains like McKinley as the apex of their climbing careers, something they built toward for years,” said Brian Okonek, considered the local dean of McKinley climbers, with 20 trips to the summit. “Now they want everything faster, they want to go for the bigger mountains sooner than they used to.”
Colby Coombs, a co-owner of the Alaska Mountaineering School, said he regularly sees people showing up to buy equipment for expeditions who do not have a clue what they are going to face or what equipment they might need.
“They underestimate the severity of the environment and overestimate their own ability,” he said. Many, he said, are particularly unprepared for the brutal cold that can occur even in July this far north, or the sudden storms that can blow in from the Arctic, driving the windchill factor well below zero.
So far this year, only 43 percent of climbers have reached McKinley’s summit, compared with the long-term average of 52 percent.
Some longtime McKinley watchers say changes in the easiest and shortest route — the West Buttress, taken by more than 80 percent of expeditions going up — could ultimately lead to a crisis if trends continue lower down the mountain.
Ice chunks breaking off at a place on the Buttress called Windy Corner, they say, are gradually exposing a sharply steeper and potentially impassable face. The alternative route would require many more miles and days on the mountain, and might add new hazards as well, including a crossing of the McKinley River.
Mr. Roche, 34, a college academic counselor from Wisconsin, said he was not sure whether he would return here someday. But he said he was acutely conscious, both in going up and coming back down, that he was walking in the footsteps of the climbers who died last month.
But he arrived back home on Friday with what he said was a nugget of wisdom, even if the summit was beyond reach. His 2-year-old son, Gus, shouted joyfully in the background as he spoke on the phone.
“Trust your instincts,” Mr. Roche said.
An Infection, Unnoticed, Turns Unstoppable
For a moment, an emergency room doctor stepped away from the scrum of people working on Rory Staunton, 12, and spoke to his parents.
“Your son is seriously ill,” the doctor said.
“How seriously?” Rory’s mother, Orlaith Staunton, asked.
The doctor paused.
“Gravely ill,” he said.
How could that be?
Two days earlier, diving for a basketball at his school gym, Rory had cut his arm. He arrived at his pediatrician’s office the next day, Thursday, March 29, vomiting, feverish and with pain in his leg. He was sent to the emergency room at NYU Langone Medical Center. The doctors agreed: He was suffering from an upset stomach and dehydration. He was given fluids, told to take Tylenol, and sent home.
Partially camouflaged by ordinary childhood woes, Rory’s condition was, in fact, already dire. Bacteria had gotten into his blood, probably through the cut on his arm. He was sliding into a septic crisis, an avalanche of immune responses to infection from which he would not escape. On April 1, three nights after he was sent home from the emergency room, he died in the intensive care unit. The cause was severe septic shock brought on by the infection, hospital records say.
Because sepsis, a leading cause of death in hospitals, can at first look like less serious ailments, a campaign to aggressively identify it for early treatment has been undertaken by a consortium of 55 hospitals in the New York region, including NYU Langone.
Yet nowhere along Rory’s journey, from boy with a bellyache on Thursday to gravely ill boy on Friday night, did anyone act on strong indications that he might be fighting for his life. Critical information gathered by his family doctor and during his first visit to NYU Langone was not used, was not at hand or was not viewed as important when decisions were made about his care, records show.
Moments after an emergency room doctor ordered Rory’s discharge believing fluids had made him better, his vital signs, recorded while still at the hospital, suggested that he could be seriously ill. Even more pointed signals emerged three hours later, when the Stauntons were at home: the hospital’s laboratory reported that Rory was producing vast quantities of cells that combat bacterial infection, a warning that sepsis could be on the horizon.
The Stauntons knew nothing of his weak vital signs or abnormal lab results.
“Nobody said anything that night,” Ms. Staunton said. “None of you followed up the next day on that kid, and he’s at home, dying on the couch?”
NYU Langone declined to discuss any aspects of Rory’s care or hospital procedures.
“Our deepest sympathies go out to the family at this difficult time,” said Lisa Greiner, a hospital spokeswoman.
The Stauntons shared Rory’s medical records with a reporter for The New York Times who had met the boy last summer in a social setting. A full airing of the case, along with a commitment to reforms, his parents said, could save lives. They have hired a lawyer, Thomas A. Moore, but have not decided how they will proceed.
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Rory Staunton, 5 feet 9 inches tall and 169 pounds, was big for his age and a student of the world. “The most profound 12-year-old I had ever met,” his debate coach, Kevin Burgoyne, said. For his birthday, his parents gave him flying lessons after Rory, who spent hours on a flight simulator, tracked down an aviation school that accepted students at 12. He devoured the memoir of Chesley B. Sullenberger III, the pilot who safely brought down an airliner on the Hudson River.
“I told him, ‘Sully did some fast math landing that plane,’ and for a short while, he was paying attention to math,” said Ciaran Staunton, Rory’s father. “Then he came back with, ‘Yeah, but by the time I’m a pilot they’ll have a faster way of doing it.’ ”
Rory and his sister, Kathleen, 10, grew up in Sunnyside Gardens, Queens, which their parents, Irish immigrants, regarded as a global village of sublime pleasures: shared courtyards, a rich brew of cultures and merry mobs of children rolling from house to house. Ms. Staunton, the former director of an international student exchange, said neighborhood kids formed their own country, Kidadelphia, designed a flag, and adapted the United States motto for their slogan: “In God and Fun We Trust.” Rory was president. When he was 8, he raided his piggy bank to treat his parents to a Chinese dinner for their wedding anniversary. At the private Garden School in Jackson Heights, he was elected to the student council in seventh grade and led a campaign, Spread the Word to End the Word, to curtail the casual, derogatory use of the term “retarded.”
Last summer, his uncle, a friend of mine, brought Rory, Kathleen and their mother to stay in my family’s vacation home for two nights. Rory would go from barreling down a water slide backward to sizing up President Obama’s prospects for re-election. Fascinated by North Korea, he tried to fathom how a country so afflicted by famine could afford a large army. (His parents recently found a note in his computer to the Swedish ambassador to North Korea.)
At home, said Mr. Staunton, a civic activist and bar owner, they would have nightly shouting matches over homework Rory had not done or dirty clothes he had not picked up, in between scoping out corners of global history.
During gym class on Wednesday, March 28, he dived for a ball and opened a cut on his arm. That night, Ms. Staunton said, Rory mentioned it: “How he presented it to me was, ‘I fell in the gym. Mr. D, the athletic director, put the Band-Aids on. And, I got the ball.’ ”
Then he finished his homework and went to bed.
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The bacteria Streptococcus pyogenes is part of the human ecosystem, normally dwelling in the throat or on the skin, areas where the body is well defended. Also known as Group A streptococcus, the strain typically causes strep throat or impetigo.
But if it is able to penetrate soft tissue or blood, “it moves very quickly,” said Dr. Michael B. Edmond, the chairman of the division of infectious diseases at Virginia Commonwealth University. “The mortality rate is high. The clinical findings early in the infection can be relatively subtle.”
The challenge for physicians is recognizing an invasive infection, whether from Group A strep or other pathogens, before the cascading damage of sepsis has picked up too much speed. The consortium of New York hospitals has a goal of starting antibiotics within an hour of spotting sepsis in the emergency room, according to officials with the Greater New York Hospital Association’s Stop Sepsis program.
For every hour’s delay in giving antibiotics after very low blood pressure had set in, a study found, the survival rate decreased by 7.6 percent.
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Shortly after midnight on March 29, Ms. Staunton heard Rory retching in the bathroom. “There wasn’t a huge amount of vomit, but he kept saying, ‘My leg, my leg, Mom,’ ” she recalled. Back in bed, he moaned. His mother rubbed his thigh. In the morning, he was weak, his leg still hurt, and his temperature was 104 degrees, his highest ever.
The parents began calling Dr. Susan Levitzky, who had been the family pediatrician for about five years. She saw Rory that evening.
“He was leaning on me as we were walking up to the office, because he could hardly stand from the weakness or pain in his leg,” Ms Staunton said. In the waiting room, Rory vomited. When the doctor swabbed his throat, he vomited on her. The swab test, a rapid but not definitive detector of strep, was negative.
“We showed her the cut on his elbow, and I saw her follow up his arm from the cut,” Ms. Staunton said. “She said, ‘The cut’s not an issue.’ She focused on his stomach. We said, ‘Although you see him throwing up, that’s not what he’s really complaining about.’ Rory and I both said to her that it’s the pain in his leg that’s really bothering him.”
The doctor told them that the leg pain might be from falling in the gym. “Rory said, ‘It wasn’t a fall, it was a skid,’ ” Ms. Staunton recalled.
The parents also remarked that Rory’s skin became blotchy when they pressed a finger on it. Those concerns were well-founded, said Dr. Edmond, the infectious disease specialist, who was not involved in Rory’s care: The mottling, which Dr. Levitzky made note of, could mean that vessels in his skin were constricting from low blood pressure; the leg pain could mean an invasive infection. Rory’s temperature was 102 and his pulse was 140; he was taking 36 breaths a minute. These, too, were “worrisome” observations, Dr. Edmond said.
Nevertheless, Ms. Staunton said, she did not recall being told that any of his vital signs were off: “She said, ‘Make your way over to NYU, and get him rehydrated. He’s vomiting now. He’s going to feel better, and tomorrow, he’ll have diarrhea.’ ”
In a brief phone conversation, Dr. Levitzky said she could not discuss the case. “I sent him to a major medical center,” she said.
•
Rory arrived at NYU Langone, on First Avenue near 34th Street, at 7:14 that evening and was discharged about two hours later. Hospital records do not reflect any communication with Dr. Levitzky or her findings about the mottled skin.
Like Dr. Levitzky, the NYU physicians believed that Rory’s discomfort was caused by a sick stomach and dehydration. His chart states that “labs, IVF, Zofran” were ordered. Zofran is an antinausea drug; two bags of intravenous fluids, or IVF, were administered; three vials of blood were drawn and sent to the hospital laboratory.
“They did the various checks, up, down, back and forth,” Mr. Staunton said.
A screening tool in the Stop Sepsis program, used when a patient first arrives in the emergency room, calls special attention to a person with three symptoms of a possible eight. At the hospital, Rory showed two: he was breathing 20 times per minute and his pulse was 143.
Two hours later, though, he had three: his temperature had risen to 102, his pulse was 131 and his respiration rate was 22. But by the time those vital signs were recorded, at 9:26 p.m., they had no bearing on his treatment. In fact, the doctor had already decided that Rory was going home. Rory’s “ExitCare” instructions, signed by his father, were printed 12 minutes before those readings.
To the pediatrician who examined and discharged Rory, it seemed that the fluids had done the trick. “Pt improved,” the doctor, Camille Scribner, wrote, prescribing “home supportive care.” There is no sign in the records that Dr. Scribner, described by a senior colleague as “hyper-conscientious,” considered alternative explanations.
“They stated that it was a common flu that was going around,” Mr. Staunton said. “It would start off as high temperature and throwing up, and would end up as diarrhea.”
Dr. Scribner could not be reached for comment through the hospital.
As the Stauntons walked Rory onto First Avenue, the air temperature was in the mid-40s. “He was freezing,” Ms. Staunton said. “He took my coat leaving the hospital. It has a little frilly thing around the collar.”
“Not a thing that a boy of 12 would put on,” Mr. Staunton said.
•
About three hours later, Rory’s lab results were printed. He was producing neutrophils and bands, white blood cells, at rates that were “very abnormal and would suggest a serious bacterial infection,” Dr. Edmond said.
The Stauntons said they heard nothing about it. In bed, Rory “was groaning in his sleep,” Ms. Staunton said. “I felt the heat of the fever.”
At 10 a.m. on Friday, the Stauntons began calling their pediatrician, Dr. Levitzky. “She told us to do a combination of Tylenol and Motrin,” Ms. Staunton said.
Asked last month about the lab findings, Dr. Levitzky, who is associated with NYU Langone, said, “I never knew that testing was done.”
Rory did have the predicted bout of diarrhea on Friday, which momentarily elated his family. Still, he could barely get to the bathroom. The doctor suggested fluids and crackers.
“‘I told her, ‘I’m not sure you’re getting the picture, Dr. Levitzky,’ ” Mr. Staunton said. “‘I can’t even get him to sit up. I don’t know how you expect me to get food into him.’ ”
Later, a slight touch would make him scream. “Around his nose was gone blue,” Mr. Staunton said. “Down his body side was gone blue.”
At that point, Dr. Levitzky told them to return to the emergency room. They supported him as he walked to the car. “All he said was, ‘Can I please have a wheelchair when I get there?’ ” Ms. Staunton recalled.
In the intensive care unit, his parents tried to mask their worry, Mr. Staunton chatting lightly. But Ms. Staunton noticed her son’s eyes following her. “He said, ‘Mom, my toes are really, really cold,’ ” she said.
After extending an arm for blood to be drawn, “he thanked them when they were finished,” Ms. Staunton said.
He had to be put on a ventilator. Just before he was sedated, Ms. Staunton said, “They told him, ‘We need to figure some stuff out. There are some marks on your body, and you need a little bit of help breathing, so we’re just going to intubate you and it’ll be fine.’ ” First, though, they checked his mental status.
“Do you know what date it is?”
“I know it’s March,” Rory answered.
“Who’s the president of the United States?”
He answered: “Barack Obama.”
His mother smiled.
“Ah,” she said, “but Rory, who is going to be the next one?”
“Barack Obama,” he said.
As the next two days passed, doctors tried anything that might halt the shutdown of Rory’s organs. “I can’t say enough about the I.C.U.,” Ms. Staunton said.
Relatives and a priest gathered bedside, talking of Irish football and tomfoolery and politics. Perhaps, one doctor whispered in a fleeting, hopeful aside, Rory might get away with losing his toes and nose. His skin blackened. He passed no urine. His blood would not clot. His heart had to be restarted twice. Three specialists who chronicled Rory’s decline on his intensive care chart each noted that on Thursday night, when he was sent home from the emergency room, he had a fever and significant signs of infection in his blood.
On Sunday night, Dr. Mayer Sagy, who had not seen Rory on his first visit to the hospital but spent the weekend struggling to keep him alive, told the Stauntons that the team had been unable to resuscitate him a third time.
“I said to him, ‘I brought him here to you the other night and you sent him home,’ ” Ms. Staunton said.
“He said, ‘You have every right to be angry.’ ”
More than anything, the Stauntons said, NYU Langone owes an honest accounting of what happened. Racked with loss, they and others remembered Rory as an unflinching champion of schoolyard underdogs.
“Above all,” Ms. Staunton said, “we know that Rory would want no other child to go through what he went through.”
A Bison So Rare It’s Sacred
If one were asked to pick a typical home where the buffalo roam, the answer probably would not be Litchfield County amid the rolling hills and understated rural chic of Northwest Connecticut.
But when Bison No. 7 on Peter Fay’s farm gave birth to a white, 30-pound bull calf a month ago, it made the Fay farm below Mohawk Mountain, for the moment at least, the unlikely epicenter of the bison universe.
For Mr. Fay, what happened was an astoundingly unexpected oddity — white bison are so rare that each birth is viewed as akin to a historic event.
For Marian White Mouse of Wanblee, S.D., and other American Indians, it is a supremely auspicious message from the spirits. She will fly with her family to Connecticut for naming ceremonies at the end of the month that are expected to draw large crowds.
And for those to whom the bison is an iconic part of the American experience, the birth is, at the least, a remarkable coincidence, coming at a time that wildlife, tribal and producer groups are lobbying Congress to have the bison officially designated as the national mammal and a national symbol alongside the bald eagle. (The words buffalo and bison are often used interchangeably, but the North American version is properly called bison and its distant cousins in Asia and Africa are buffaloes).
Mr. Fay, who has an elaborate bison tattoo on his right shoulder and another above his heart, comes from four generations of dairy farmers and makes his living through an excavating and rock-crushing business. He began raising bison as a hobby four years ago, capitalizing on a growing appetite for bison as a leaner alternative to beef, and then became increasingly excited about the animals, building his herd to more than 40 until he sold off about half of them two months ago.
“They’re awesome animals, wild, not domesticated,” Mr. Fay said. “You think of them in South Dakota, where it’s a desert and hot in the summer and bitterly cold in the winter. They don’t mind either one. And they don’t get sick. They’re not like a cow. They’re very hardy. They can deal with anything.”
Mr. Fay, 53, said he was watching a female preparing to give birth on June 16 when he realized a second one was about to give birth as well.
“I was watching and watching and when the second one hit the ground, it was white,” Mr. Fay said. “I don’t know if you’ve ever seen an animal born, but they’re wet. So you don’t see much until the mom dries it off, but once it stood up to nurse, and it was right next to the other one, it looked like a ghost.”
Mr. Fay said his Indian friends had told him that a white bison was considered the most sacred thing imaginable — its birth viewed as something like the Second Coming.
Mr. Fay said he carefully researched the bloodlines of the calf’s mother and father, and he is confident the animal is all bison without any intermingling with cattle. But to be certain, he has sent its DNA for testing. Keith Aune, senior conservation scientist with the Wildlife Conservation Society, said some white bison are albinos and have difficulty thriving in the wild because they lack the black skin that absorbs sunlight during harsh winters.
Mrs. White Mouse, a member of the Oglala Lakota people, said a white bison was believed to be a manifestation of the White Buffalo Calf Maiden, or Ptesan Wi. She is revered as a prophet, who in a time of famine taught the Lakotas seven sacred rituals and gave them their most important symbol of worship, the sacred pipe.
“They are very rare, and when a white bison is born there is a reason for each one to be here,” Mrs. White Mouse said. “It’s such a blessing for someone to take care of a bison like Peter Fay will. I told him when it was born, ‘You don’t even know what you have on your hands here.’ ”
Mr. Fay said he was getting the idea, and being very careful. A white bison in Texas was slaughtered a year ago in what some believed could be an anti-Indian hate crime. Mr. Fay said either he or someone else watched the field day and night. He said that he was prepared for what could be four days of festivities, with the naming ceremony scheduled for July 28, and that he had no interest in selling the bison.
Experts have said one in 10 million bison are white, but a few other white bison births in recent years suggest the rate is somewhat higher.
There were once perhaps 40 million bison roaming wild in the United States. They were hunted to near extinction and have had something of a resurgence both because of conservation efforts in the West and commercial demand; there are now about 500,000 in the country.
Less than a month before this bison was born, the National Bison Legacy Act was introduced in the Senate. The act would designate the American bison as the “National Mammal of the United States.” (There has never been a national mammal.) It has 15 co-sponsors, including the two senators from Connecticut, and an upbeat Web site, votebison.org, though its prospects for passage are unclear.
Mr. Fay said he believed the Indian teachings about the animals, though he found it hard to tie the birth to any one event.
Still, he said: “I think it’s not coincidence that all this stuff is happening. The more you get involved with Native Americans, the more you see it’s a good thing that it’s happening. The country is now in pretty sad shape, so you never know what can help. But for now, I’m just trying to learn about it.”
Conflict Potential Seen in Genetic Counselors Paid by Testing Companies
Genetic testing raises some vexing ethical questions, like whether it will cause unnecessary anxiety or lead to more medical procedures, including abortions.
Now, as the number of tests and the money to be made from them are exploding, another question is being asked by professionals in the field themselves. Is it ethical for genetic counselors, who advise patients on whether to undergo testing, to be paid by the companies that perform the tests?
While it might not always be immediately obvious to patients, some counselors offering them advice in hospitals and doctors’ offices work for the commercial genetic testing companies, not for the hospitals or doctors themselves.
Critics say the arrangement poses a potential conflict of interest, in that the company-employed counselors might have an incentive to recommend more testing than necessary or not to recommend a test offered by a rival laboratory. The practice, they contend, could undermine trust in the profession just as genetic counselors are poised to play a growing role in medicine, helping patients sift through an ever-increasing array of available genetic tests.
“Ultimately, the success of a corporate lab depends on the utilization of their tests, and therefore, so too does the job security of the genetic counselor,” Katie Stoll, a genetic counselor at the Madigan Health Care System, a government medical center in Tacoma, Wash., wrote recently on the DNA Exchange, a Web site for genetic counselors. Ms. Stoll said she worried that in some cases “the line between genetic counselor and sales representative is blurred.”
There are genetic tests for more than 2,500 diseases, up from fewer than 800 diseases in 2001, according to GeneTests, a database supported by the federal government. UnitedHealth, the big insurer, recently projected that spending on genetic testing in the United States would grow to as much as $25 billion in 2012, up from $5 billion in 2010.
Some leaders in the genetic counseling profession say that testing companies have supplied counselors to medical practices for more than 10 years with no evidence that patients have been harmed.
“I’ve never heard it being raised as a real issue in the quality of patient care,” said MaryAnn W. Campion, director of the master’s program in genetic counseling at Boston University.
Doctors who defend the arrangement say that they cannot afford to hire counselors on their own because reimbursement for counseling is low.
While Medicaid, Medicare and private insurers often pay for genetic tests, they are less likely to pay for the counseling sessions, sometimes lasting an hour or longer, that can precede and follow such testing. Most states do not license genetic counselors, and it can be hard for a nonlicensed practitioner to obtain reimbursement.
But testing companies can subsidize the typical $65,000 annual salary of the genetic counselors from testing revenues.
“The problem is that genetic counseling is a time-consuming, labor-intensive process that fundamentally is a money loser,” said Dr. Mark I. Evans, director of Comprehensive Genetics, a Manhattan practice dealing with high-risk pregnancies.
While Dr. Evans employs his own counselors, he said the use of company-employed counselors “allows patients who would not get access to this information to have it.”
About 9 percent of the nation’s approximately 3,000 genetic counselors now work for testing laboratories, up from 2 percent in 1990, according to the National Society of Genetic Counselors. However, the society estimates that only one-third of those directly counsel patients, with many others advising only doctors.
The company most known for placing counselors inside hospitals and medical offices is Genzyme Genetics, which was acquired by LabCorp in 2010 and renamed Integrated Genetics. Integrated Genetics says it has about 140 counselors offering services at 200 locations. These counselors deal primarily with prenatal testing.
Stephen Anderson, a spokesman for LabCorp, said the counseling was part of the testing service and that counselors were not compensated based on how many tests were ordered.
“Genetic counselors are not sales people,” he said “Our counselors are trained professionals that are looking to provide appropriate care, period.”
Mr. Anderson said doctors and hospitals using the counselors were not required to send samples to LabCorp.
Still, some doctors and executives in the testing business say LabCorp needs a certain volume of testing to justify placing a counselor in a doctor’s office. And the genetic testing industry certainly perceives that those counselors help bring testing to LabCorp.
Another testing company, Bio-Reference Laboratories, recently started hiring its own counselors to place in prenatal medical practices. “You can’t compete if you don’t go in and do it,” said Dr. Marc D. Grodman, chief executive.
Many genetic counselors say there is little risk for patients since genetic counselors are trained to discuss options with patients but not to make recommendations. Also, there are guidelines from medical societies as to which tests are appropriate.
Doctors who use the LabCorp counselors say that the counselors disclose the relationship to patients and bill patients separately. Also, some doctors say, they order the tests, not the counselors.
“I order a test because I want to order a test, not because they do,” said Dr. Lawrence Platt, director of the Center for Fetal Medicine and Women’s Ultrasound in Los Angeles. He said LabCorp paid rent to the practice for the space occupied by the counselors.
Still the American College of Obstetricians and Gynecologists, in an opinion published in 2008, stated that neutral counseling “may be compromised through the use of patient education material or counselors that are provided by a company that might profit from a patient’s decision to undergo testing.”
Dr. Richard Fischer, chairman of maternal fetal medicine at Cooper University Hospital in Camden, N.J., while saying he was pleased over all with the LabCorp counselors, said that he to resist the company’s counselors to offer a test to all pregnant women that was not recommended by ACOG.
Dr. Cathleen Harris of Scottsdale Perinatal Associates in Arizona said that after discussions with LabCorp, she opted not to use its counselors “in part because we didn’t want to have an exclusive agreement with them for all our lab tests.”
Kara Murphy of Fanwood, N.J., saw a Genzyme counselor after an ultrasound at a hospital suggested something might be wrong with her fetus. She said she thought the counselor worked for the hospital.
“Even if she handed me a card that said Genzyme on it, I have no idea what Genzyme is,” Ms. Murphy recalled. The counselor discussed numerous testing options, which Ms. Murphy said would have cost her $2,500 out of pocket, and, in retrospect, would not have found what was wrong.
She eventually went to Elena Ashkinadze, a genetic counselor at the Robert Wood Johnson Medical School and president of the Human Genetics Association of New Jersey. Ms. Ashkinadze, after ordering tests from various labs that cost Ms. Murphy $600 out of pocket, figured out the rare disease Ms. Murphy’s son would have.
Ms. Ashkinadze said it was not clear if Ms. Murphy had received bad advice from the Genzyme counselor. But Ms. Ashkinadze said having testing companies provide such advice could raise suspicions among patients. “We shouldn’t be pawns in the marketing scheme,” she said.
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