BY RENEE DUDLEY
rdudley@postandcourier.com
The Post and Courier

CROSS, S.C.–Raymond Johnson checked himself into the emergency room last month for a throbbing pain in his chest.

The 26-year-old was stunned when the doctors delivered his diagnosis — breast cancer.

Uninsured and unable to pay for costly surgery and chemotherapy, the Cross resident followed the advice of his patient advocate and applied for a Medicaid program that covers breast cancer treatment.

Raymond Johnson of Cross found a lump in his left breast and was diagnosed with breast cancer in July. Uninsured, Johnson, 26, must rely on the generosity of hospitals and doctors for treatment.

A few days later, Johnson got another surprise. He was denied for the program because he is a man.

The Breast and Cervical Cancer Prevention and Treatment Act, a federal law enacted in 2000, uses Medicaid funds to cover treatment for breast cancer or cervical cancer patients who otherwise wouldn’t qualify for the state and federally funded health insurance program for the poor and disabled.

Patients must meet a host of eligibility requirements. According to the South Carolina Medicaid agency, Johnson met all except one: Men aren’t allowed.

“Cancer doesn’t discriminate, so this program shouldn’t discriminate,” Johnson said.

The state Medicaid agency agrees.

On Friday, the department called the federal policy “discriminatory,” and for at least the second time in two years is calling on the Centers for Medicare & Medicaid Services to change it.

“We are again urging CMS to reconsider,” the S.C. Department of Health and Human Services said in a statement. “It’s a very clear example of how overly rigid federal regulations don’t serve the interests of the people we’re supposed to be helping.”

The Centers for Medicare & Medicaid Services did not return calls seeking comment.

The federal department’s guidelines for the breast and cervical treatment program say women must be diagnosed through “early detection” programs funded by the Centers for Disease Control and Prevention, another federal agency.

In South Carolina, such screening is offered to uninsured women between the ages of 47 and 64 who meet certain income guidelines.

Specifics of the law

The Breast and Cervical Cancer Prevention and Treatment Act of 2000 allows states to provide full Medicaid benefits to uninsured women under age 65 who need treatment for breast or cervical cancer.

Eligibility criteria for the program are less strict than those for standard Medicaid.

The program extends coverage to women below 200 percent of the federal poverty, or an income of $1,815 a month for single person. Standard Medicaid requires 50 percent of federal poverty, or $835 a month.

Additionally, the program extends coverage to women without dependent children. Medicaid typically does not cover childless adults unless they are elderly or disabled.

The program does not cover men diagnosed with breast cancer.

By the numbers

* About 2,140 new cases of invasive breast cancer in men are diagnosed in the U.S. annually.

* About 450 men are expected to die from breast cancer this year.

* Breast cancer is about 100 times less common among men than among women.
For men, the lifetime risk of getting breast cancer is about 1 in 1,000.

* Studies show that men and women with the same stage of breast cancer have a fairly similar outlook for survival.

The Centers for Medicare & Medicaid Services neither recommends nor covers routine breast cancer screening for men, meaning they “may not be considered screened” under the treatment coverage program, according to its guidelines.

The Health and Human Services Department questioned the requirement more than two years ago, when it attempted to extend Medicaid coverage to a man who had breast cancer.

The Centers for Medicare & Medicaid Services responded in a January 2009 letter, saying: “In order to change the eligibility requirements, Congress would need to change the law.”

Teresa Pischner, a “Breast Nurse Navigator” with Roper St. Francis Healthcare where Johnson gets chemotherapy every two weeks, said an amendment should be considered.

“It was shortsighted to exclude men who meet the same eligibility requirements,” Pischner said.

The American Cancer Society estimates that 2,140 new cases of breast cancer in men are diagnosed annually in the U.S.

In South Carolina, 16 men with breast cancer diagnoses have applied for coverage through the Medicaid breast and cervical cancer program since 2007. Three of them met all the eligibility requirements but were denied because they were men, said Jeff Stensland, Health and Human Services spokesman.

About 1,180 women are enrolled in the treatment coverage program, according to the department’s most recent figures.

A spokeswoman for the American Cancer Society’s lobbying group in Washington, the Cancer Action Network, said that before federal law established the treatment coverage program in 2000, early detection efforts caught breast and cervical cancer in uninsured women, but those patients still had insufficient money to pay for treatment.

“The intent of the law was to fill that gap,” said Mona Shah, associate director of federal relations for the network.

Male breast cancer patients and patients with other types of cancers will be eligible for private health insurance once federal health reform is fully implemented in 2014, Shah pointed out. She said it is unclear what will happen to the Medicaid program for breast and cervical cancer in the coming years.

As it is, though, health care providers must cobble together resources to treat Johnson and other men in his position, said Pischner, the nurse navigator. Patients pay what they can but rely heavily on hospitals’ charity care, free or discounted medicine from pharmaceutical companies and other donated services, she said.

Johnson sees doctors and a surgeon at Trident Medical Center in North Charleston and gets chemotherapy at Bon Secours St. Francis Hospital in West Ashley.

Both are more than an hour from his family’s trailer in Cross, so he received gasoline cards from Share Our Suzy, a Columbia nonprofit support group for breast cancer patients, to help him pay for transportation to treatment.

Even before his diagnosis, Johnson had trouble finding work laying tile, his trade. As a cancer patient, it’s even tougher, he said.

“I’ve been spending a lot of time sitting down, and I’m not a sit-down person,” he said.

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Community Wants Answers On Cancer Rate

Spartanburg WSPA TV, South Carolina
By CHRIS CATO
Published: November 16, 2010

Whoever came up with the saying “good fences make good neighbors” clearly never lived on Bennett Dairy Road.

Here in the Cannons Campground community east of Spartanburg, the yards are not separated by fences. But the quality of the character of the person next door is never in question.

Take Benjamin “Frog” Bennett, for example. At 75 years old, Frog would never let a fence impede him from his daily duty of walking to the house next door to check on Karen Murph.

“She needs somebody and I’m the closest one to her, and I’m retired,” says Bennett, “so why shouldn’t I look after her?”

The neighbors share more than a cup of sugar. An unfortunate bond binds them. Both lost their spouses to cancer. Frog’s Martha died of lymphoma in 2008 at age 73. She fought the disease for 14 years. The last two were the worst.

“When she passed away, she weighed 75 pounds,” says Bennett. “If it had been something I could have fought with my hands, it would be different. But I couldn’t. I couldn’t do anything for her.”

Murph knows his feeling of helplessness. Her Tommy lived for only 18 months after developing a brain tumor in 1997 at the age of 44. While he was undergoing treatment, she was also diagnosed with cancer.

“We had always been so healthy,” says Murph. “It was so weird how it just hit us both like that. But we weren’t the first on this road to get sick.”

WELCOME TO THE NEIGHBORHOOD

Karen and Tommy Murph moved to Bennett Dairy Road from Landrum in 1990. In this area where most of the surnames are Bennett or Chapman or Arthur, the Murphs stood out. But after their diagnoses with cancer, they knew they were officially part of the neighborhood. The house across the road from them was home to a mother-daughter pair of Chapmans who had survived uterine and breast cancers, respectively. Next door, Frog Bennett’s wife was battling lymphoma. Next door to the Bennetts, Fred Arthur was in his final struggle with colon cancer. Next door to Fred Arthur, Ralph and Joyce Arthur were still haunted by the loss of their youngest child, Kimberly, who died in 1975 at the age of 15 with leukemia.

“I will never, ever, ever get over it,” says Ralph Arthur, now 80. “I don’t care how long I live, I will never get over losing Kim, so young.”

The sad pattern continues down Bennett Dairy Road, which stretches just over a mile from Old Converse Road to Bud Arthur Bridge Road. In a door-to-door survey of homes in this small area, WSPA documented 25 cases of cancer, 14 of them fatal, dating back to the Kim Arthur case in ’75. The most recent diagnosis was in 2001, a 60-year old man with bone cancer.

“It just makes you wonder why?” asks Frog Bennett. “Why has this particular area had so many deaths?”

That’s the question WSPA set out to answer at the onset of this investigation in August 2010, a journey that would lead to some places this community had forgotten about and, ultimately, to a place everyone knows.

NOT A CANCER CLUSTER…

Your first impulse when hearing of a seemingly high number of cancer cases in a limited area is to label it a “cancer cluster”. Your second impulse is to take the information to South Carolina’s authority on such matters: the Department of Health & Environmental Control. But DHEC spokesperson Adam Myrick quickly informed us the illnesses on Bennett Dairy Road do not constitute a cancer cluster for a number of reasons. The first and foremost being, cancer is common.

“Cancer’ is an umbrella term given to a wide variety of diseases of a cellular nature for which there is no cure,” says Myrick. “Because of that, you are always going to be able to find a certain level of cancer in every community.”

He also points to other factors, such as heredity and lifestyle. Cancer is genetic (many of the families on Bennett Dairy Road and the surrounding area are related). Cancer is more common in people over age 50 (many of the patients in this area are older). And cancer clusters are usually made up of the same type of cancer because of a common environmental factor (such as asbestos causing lung disease).

A true cancer cluster, as defined by DHEC, exists when the number of cancer cases that occur is more than would be expected by chance to occur in a certain location or time period. To determine if this exists, DHEC’s South Carolina Central Cancer Registry (To learn more about cancer clusters, click here) conducts what is called a community cancer assessment by looking at the number of cases and deaths that occurred in the zipcode of the area of concern. In fact, SCCCR conducted an assessment of the Bennett Dairy Road zipcode, 29307, in 2002, using data from 1996 to 2000. (1996 is the earliest year that can be studied by SCCCR because that is the first year legislation required hospitals, labs, and doctors’ offices to report new cancer incidences to DHEC.) The assessment found there were fewer cancer cases and cancer deaths than expected in 29307, concluding there was no evidence of cancer clustering.

To find out cancer rates in your community, click here.

…OR IS IT?

However, many of the cases documented by WSPA in Cannons Campground were diagnosed prior to 1996. Seeking a second opinion, we took our findings to Dr. Jim Burch, an epidemiologist with the University of South Carolina’s Cancer Control Program.

He echoed many of the things DHEC told us regarding cancer clusters. And he told us it’s hard to make an assessment without knowing the community firsthand. But he also said three things about our data caught his eye:

1) While the cases are not all the same type of cancer, there are several hematological forms of the disease, including three cases of leukemia and variations of bone cancer. The three leukemia cases are located almost next door to one another.

2) While many of the patients are older, there are several young victims. In 1976, one year after Kim Arthur died of leukemia at age 15, a 17-year old named David Putman was diagnosed with osteogenic sarcoma in his leg. He died two years later. Also in 1976, 35-year old Loretta Richburg developed a mass in her leg and died four years later. None of these victims were related.

“It does seem unusual to me,” said Dr. Burch, looking at a map pinpointing the homes of those afflicted. “A lot of the cancer clusters that have been investigated — and there have been a lot of them with problems all across America — started in just the same way.”

3) The third thing about our information that struck him as odd was the story of Karen and Tommy Murph — not the fact that they developed cancer at the same time; Burch says that’s not unheard of. But there was a third member of the Murph household affected during the same time period: Petey, the family dog.

“She wasn’t even that old,” says Karen. “She just had these big knots come up on her. (The veterinarian) said she had tumors.”

The dog died of cancer just before Tommy Murph succumbed to the tumor in his brain.

“That’s unusual,” says Dr. Burch. “Pets can serve as sentinels for situations where there might be an environmental contaminant.”

CONTAMINATED?

If there was a contaminant in the environment on Bennett Dairy Road, Karen believes she knows how it entered her household: through the well in her backyard. Most of the homes in this area were on private wells until the mid-to-late 1990s. Karen says her water tasted awful.

“It was just so doggone strong, it just about made me sick to my stomach,” says Karen.

She says she stopped drinking the water and refused to let her son do so. Tommy kept drinking it, and so did Petey the dog. But Karen says she did enjoy taking long baths in the tub.

“I was the kind that would just get in there and soak for hours,” she says.

The disease she was diagnosed with in 1997 was anal cancer.

After undergoing radiation treatment, the cancer went away. But she says it came back in 2005 in another part of her body and is now in her brain. She says her doctor recently gave her six months to live, but she doesn’t accept it.

“I’m fighting it and I’m gonna win it, by doggies,” says Karen. “i’m gonna fight with everything I can.”

Frog Bennett says he never had a problem with the way his well water tasted. But another neighbor, Corinne Dillard, says she did. She says it started tasting strange in the 1970s.

“Everybody in my family just started getting sick,” says Dillard, 79.

She says over the years, they had their water tested three times and each time it was contaminated. She couldn’t remember with what it was contaminated, but she says she remembers what her doctor said when she showed him the test results.

“He told us not to use the water, not to even take a bath in it,” says Dillard.

That was the year before her husband died of heart trouble. Dillard says shortly before his death, doctors found a cancerous tumor in his throat.

RECENT TESTS COME BACK CLEAN…SORT OF

As part of this investigation, WSPA paid a private lab, Rogers & Callcott, to test water samples drawn from six wells in the community, including Karen Murph’s inactive well and two active wells. Three of the samples came back with high levels of acetone, but the lab determined that’s because the bottles used by Clemson University researchers to collect the samples were pre-rinsed in acetone. There were no suspicious levels of any other volatile organic chemicals.

These results were not a surprise. Volatile organics break down rapidly in the environment. And ground water is constantly moving.

“Test performed today don’t tell us what was in those wells 20 or 30 years ago,” says Dr. Burch.

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On trail of a rare disease

By Tony Bartelme
The Post and Courier
Sunday, August 15, 2010
In September 2005, a letter landed on the desk of Dr. Jerry Gibson, the state’s top disease detective.

It came from a person who once worked on the sixth floor of the Medical University of South Carolina’s Children’s Hospital. In the letter, the person said that three colleagues who worked within steps of each other developed a rare disease called myasthenia gravis.

Myasthenia gravis means “grave muscle disease” in Latin. Though it’s rarely fatal, sufferers may lose muscle control in their arms and legs and may have trouble swallowing and talking. Scientists think it’s caused by an abnormal immune response but don’t know what triggers it. There is no cure.

Photo by Brad Nettles

The Post and Courier

MUSC Children’s Hospital is located on Ashley Avene at Sabin Street in Charleston.

Gibson was intrigued. As the state’s chief epidemiologist, he runs a department that tries to prevent as many diseases and health problems as his budget will allow. And scientists have long relied on the study of clusters to identify a mysterious disease’s cause and stop its spread. Gibson convened a committee to investigate the letter writer’s allegations.

What did and didn’t happen next is a story of detective work, mystery and frustration. On a deeper level, it’s about a world that scientists sometimes don’t understand well enough to determine cause and effect, and where the outcome isn’t always clear.

‘Very uncommon’

The red brick Children’s Hospital sits on the southern edge of MUSC’s campus and is the state’s largest pediatric health center. It was built in 1987 and has rooms for patients, offices and labs. To do tests and clean utensils in the lab, employees and students routinely use a laundry list of chemicals, including chloroform, formaldehyde and other known carcinogens, documents obtained by The Post and Courier show.

In the late 1990s, some of the labs’ hoods — air handlers that vent chemicals outside the building — went down for days at a time. Still, internal inspection reports reveal few violations of federal health and safety regulations, other than citations for failing to properly label hazardous chemicals. Heather Woolwine, MUSC media relations director, said that there have been “no reports of significant indoor air problems or chemical exposures in the Children’s Hospital facility.”

The myasthenia gravis letter in 2005, however, described at length employees’ concerns that they might have been exposed to something that triggered their illnesses. The letter writer said that three employees developed symptoms of myasthenia gravis during the late 1990s and that the facility had ventilation problems that may have exposed them to lab chemicals and other vapors.

The letter writer claimed to know of 25 other workers and researchers on the floor who had immune disorders, rare nerve disorders and other health problems. A fourth employee with possible myasthenia gravis would surface later. (Employees discussed in the letter to Gibson were not identified in documents obtained by The Post and Courier under the state’s Freedom of Information Act. Officials with DHEC declined to identify the patients, citing medical privacy laws.)

The letter writer noted that the disease was relatively rare. Estimates vary, but researchers think that 14 per 100,000 people in the United States have myasthenia gravis. That makes it more common than Lou Gehrig’s disease (Amyotrophic lateral sclerosis), which affects one or two people per 100,000, but not something doctors typically see.

“It’s not super rare, but it’s very uncommon,” Gibson said. “So we said, ‘Yeah, we need to look at this.’”

Opportunities, challenges

Gibson has gray hair, thick eyebrows and a reassuring voice that doesn’t hint at the pressures of his job. His office in downtown Columbia is in a building designed in the 1820s by noted architect Robert Mills, and Gibson says with a smile that it originally was built as an asylum for mental health patients. As a young man, he worked in the Peace Corps in what today is Malawi and was overwhelmed by the suffering and health problems he saw. Doctors could treat only so many people, he thought. “That’s where I got the idea that I wanted to do something about preventing diseases,” he said.

After receiving his medical degree, Gibson went into epidemiology, a field that identifies the risks and causes of diseases and seeks ways to prevent them and their spread. Today, he heads the state Department of Health and Environmental Control’s bureau of disease control, a division with responsibilities that range from preventing flu outbreaks to tracking down partners of people with sexually transmitted diseases.

Cluster investigations long have been an important tool for epidemiologists. One of the field’s defining moments happened in the mid-1800s in London during a cholera outbreak. At the time, people thought cholera was caused by “miasma in the atmosphere,” but a physician and scientist named John Snow theorized that it might be related to water contaminated with bacteria. He mapped cholera cases during a particularly deadly outbreak in his neighborhood.

“I found,” he wrote later, “that nearly all the deaths had taken place within a short distance of the (area’s drinking water) pump.” The pump was disabled, and cholera cases in the area soon dropped.

But cluster investigations can be tricky.

“Random does not mean evenly distributed,” Gibson said. “Any random pattern of dots will look like it has clusters. The challenge is to distinguish clusters that happened from chance from the ones that have causes in space and time.”

The only proven cluster in South Carolina was discovered in the late 1990s when residents in Charleston’s Neck Area told DHEC they were concerned about the high number of cancers in their area. Using the state’s then-new cancer database, DHEC researchers found elevated rates of five types: colorectal, stomach, lung, laryngeal and pleural. The pleural cancers stood out the most. Researchers found four times as many as what typically would be expected in the area. And this type of cancer provided them with a key clue: It usually is triggered by asbestos exposure.

Researchers eventually found that two-thirds of the pleural cancer cases involved people who once worked around asbestos at the former Charleston Naval Shipyard. Six months after they began their investigation, cancer registry researchers determined that a cluster did exist and that it was related to the shipyard, not where people lived.

Gibson said that investigation was easier than most largely because of the asbestos connection. Other investigations require more work, and sometimes dumb luck. He said that a noted cluster investigation began in Boston after two doctors struck up a conversation in an elevator and one mentioned that he had several patients with an extremely rare form of vaginal cancer. The other said he did, too. From that conversation, doctors and researchers identified eight patients in the Boston area with the disease. After a painstaking investigation into the patients’ medical and family histories, researchers discovered that the mothers of all eight took high doses of an estrogen drug used in the 1940s and 1950s to prevent premature labor. “It’s a great detective story,” Gibson said.

The vast majority of cluster investigations, however, turn out to be busts. In the 1990s, the Centers for Disease Control performed one cluster investigation after another without finding causes of diseases.

“They concluded that it wasn’t a good use of tax dollars, not a high yield for the cost of the activity,” Gibson said. “But now and then you learn something really interesting and helpful. So they’re worth doing if you have the resources.”

That’s why Gibson thought it was worth investigating the letter writer’s concerns about myasthenia gravis at MUSC.

“There were three people who were working at MUSC and they appeared within a space of a few years to come down with a fairly unusual condition.” If it turned out to be a real cluster, perhaps there was something in the building that was causing the disease, he said. “There are two benefits there: Maybe you could get rid of what’s causing it — prevention — and secondly, myasthenia gravis is a big mystery; nobody has really figured out what triggers it. So it’s a chance to understand what one of the triggers might be. So there were a lot of benefits: You can make people feel better, prevent new cases, and understand the disease.”

Investigation begins

After discussing the matter with his colleagues, Gibson asked the National Institute for Occupational Health to study the letter-writer’s allegations, but the agency declined. He then contacted Ray Greenberg, president of MUSC, who agreed to help with an investigation.

“Greenberg is a smart guy and understood that even if something was found that implicated something in the (building’s) environment, they were much better off finding it and correcting it than covering it up, so he immediately wrote back and said ‘yes, we’ll cooperate fully,’ ” Gibson said.

Gibson formed a committee. Because the state had no money set aside to fund such an investigation, all parties agreed to do it on a volunteer basis. Joining staffers from DHEC were researchers from the University of South Carolina Arnold School of Public Health, a representative from the federal Centers for Disease Control and Prevention, and Dr. Daniel Lackland, a professor in MUSC’s neurosciences department who specialized in epidemiology. All signed agreements that essentially put them under DHEC’s legal umbrella, a move to reduce their exposure to lawsuits should any arise from their work.

Gibson said the group talked about whether Lackland’s participation was a conflict of interest because of his position at MUSC.

“If he had been the only one (on the committee), it would have been a worry,” Gibson said. “But there were a number of people on the team, and that dilutes the worry. And it was important to have someone on site. You also have professional ethics here; your job is to find the truth, especially if you’re an academic public health person.”

In late 2005, Gibson e-mailed one of the people who claimed to have myasthenia gravis: “We propose to get in touch with a very senior doctor at MUSC, who we hope will be willing to take responsibility for looking into this situation seriously … We will keep you informed of the progress!”

12 cases in Charleston

Lackland is a respected epidemiologist who has spent years investigating why South Carolinians have higher than normal rates of stroke and hypertension and why these rates are higher among black patients.

An epidemiologist has “to be comfortable with complexity and uncertainty, and that can be frustrating sometimes,” he said, and the investigation into myasthenia gravis at MUSC would be filled with both.

The first step was to verify whether employees on the floor in fact had myasthenia gravis.

To determine this, researchers needed detailed reviews of patients’ medical and work histories.

He and Gibson said that one patient was extremely cooperative but that two others declined to release the needed records or do in-depth interviews.

“They weren’t comfortable releasing their medical records, so in the end it was a dead-end,” Gibson said.

Despite the inability to obtain the employees’ medical records and cooperation, other members of the committee acquired data on medical records from the state Office of Research and Statistics, which records diagnoses of diseases throughout the state.

The database search generated some possible new clues: Between 1996 and 2005, 73 patients had myasthenia gravis in South Carolina. And of those 73, eight cases — 11 percent — involved MUSC employees.

Meanwhile, Charleston and Richland counties each recorded 12 cases, far more than any other counties in the state. That’s roughly twice as the state’s average rate, said Khosrow Heidari, a top DHEC epidemiologist also on the team.

Still, Heidari cautioned that it’s difficult to draw statistical conclusions from such a small number of cases. Gibson added that although Charleston had 12 cases, that number was still within what normally is found in other parts of the country with similar population levels.

By late 2006, the investigation was losing steam, mainly because the committee couldn’t verify the myasthenia gravis diagnoses, and therefore, whether there was in fact a verifiable cluster at the Children’s Hospital.

“There were dwindling levels of enthusiasm,” Lackland said.

The investigation chugged along for two years. Investigators learned that a fourth employee in the Children’s Hospital also may have myasthenia gravis, but they weren’t able to verify that diagnosis, either. In an e-mail to Gibson in 2008, Erik Svendsen, a USC professor, wrote that he didn’t think the numbers, statistically speaking, constituted a cluster.

“This still appears to be just a few unfortunate cases who happen to share the same employer,” he wrote. “I still do not believe that this small cluster alarm warrants a public health investigation, especially given the current economic constraints which our government and agency are currently facing — this could likely be a waste of valuable time and resources which could be better spent on public health issues which threaten larger populations in S.C.”

In the end, Lackland said the team “gave it our best effort. Even though we’re all volunteers, we were all very dedicated, (but) it just didn’t build up and get legs. Is there something we missed? Possibly. But I didn’t see it. Clusters sometimes just happen.”

Unconnected dots

In recent decades, disease clusters, especially those related to pollution, have made international headlines. A few cluster investigations have been made into popular books and movies (“Erin Brockovich” and “A Civil Action”). This comes amid a rising tide of cancer — every year more than 1.2 million cases are diagnosed — and another trend: an ever-increasing number of chemicals in commercial products, most of which have yet to be tested for their long-term affects on human health. The Environmental Protection Agency has required testing of only 200 of the 80,000 chemicals in use.

A report by the U.S. Public Interest Research Group Education Fund in 2002 found that health departments across the country receive more than 1,000 requests for cluster investigations a year and are “just one sign of the broad public concern about the role environmental factors play in the development of chronic disease.”

Amid all of these chemicals, new diagnoses and media attention, it’s easy for the public to connect the dots, whether the dots show something or not.

“We don’t want things to happen randomly,” Gibson said. “It’s a human reaction. We want there to be a reason for things.” But, he added, “It can be very harmful if people find the wrong reason,” a situation akin to charging an innocent person with a crime and allowing the true perpetrator to remain at large.

Since the letter landed on Gibson’s desk five years ago, the myasthenia case investigation has become the epidemiological equivalent of a cold case. MUSC has made extensive repairs to the Children’s Hospital. Labs on the sixth floor were converted into office space. As in any large organization, many employees have moved on. Trying to reconstruct what might or might not have happened in the late 1990s would be a massive research undertaking. Only the questions about what did or didn’t happen in the building remain.

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