Ohio child cancers confound parents, investigators by John Seewer

Associated Press

CLYDE, Ohio – Every time his kids cough, Dave Hisey's mind starts to race. Is it cancer? Is it coming back?

His oldest daughter, diagnosed with leukemia nearly five years ago when she was 13, is in remission. His 12-year-old son has another year of chemotherapy for a different type of leukemia. And his 9-year-old daughter is scared she'll be next.

Hisey is not alone in fearing the worst. Just about every mom and dad in this rural northern Ohio town gets nervous whenever their children get a sinus infection or a stomachache lingers. It's hard not to panic since mysterious cancers have sickened dozens of area children in recent years.

Since 1996, 35 children have been diagnosed — and three have died — of brain tumors, leukemia, lymphoma, and other forms of cancer — all within a 12-mile wide circle that includes two small towns and farmland just south of Lake Erie. With many of the diagnoses coming between 2002 and 2006, state health authorities declared it a cancer cluster, saying the number and type of diagnoses exceed what would be expected statistically for so small a population over that time.

"All you think about is what happened to these kids," said Donna Hisey, 43, the mother whose family has been devastated by cancer. "Is it gone? Or is it still here? What is it?!"

After three years of exhaustive investigation, no cause is known. Investigators have tested wells and public drinking water, sampled groundwater and air near factories and checked homes, schools and industries for radiation.

They also set up a network of air monitors across eastern Sandusky County, finding cleaner air than in most places around Ohio, the health department said.

Nothing unusual was detected. Not even a hint.

"From the very beginning, we've said the vast majority of childhood cancer causes aren't known," said Robert Indian, the state health department's chief of comprehensive cancer control. He'll soon release yet another investigative report.

Without any answers as to what's attacking their children, parents are left to question whether living within a known cancer cluster area is endangering their kids. Perhaps surprisingly, only a handful have moved away.

"It's in the back of everybody's mind," said Scott Mahler, who has two healthy young sons. "Are you going to risk your children's lives by living here?"

Eight children were diagnosed with cancer in and near Clyde between 2002-2006, nearly four times the number that state health experts figure is normal.

Ohio health investigators converged on the town of just 6,000 people halfway between Cleveland and Toledo and home to the Whirlpool Corp.'s largest washing machine factory.

What they found was worse than anyone suspected. The cancers affecting victims age 19 and younger included neighboring townships and much of the nearby town of Fremont.

One in five of the cancer cases were related to the brain or central nervous system, matching national rates, according to the American Cancer Society.

The diagnoses peaked in 2006, when nine children were told they, too, had cancer. Since then, there have been four new cases. The most recent came in the spring this year, when a 7-year-old girl was diagnosed with rhabdomyosarcoma, a rare cancer of the body's connective tissues.

At first, investigators focused just on Clyde, where social calendars revolve around school, sports and church. Most families have been here for generations. It's the kind of place where teens can't wait to leave — only to find they can't wait to come back to start a family.

Seeing their children afflicted by unexplained illnesses has strengthened the bond among parents and neighbors instead of scaring them away.

"Even if it would've happened to my family, I can't imagine where else I would go to get the support I needed," said Melanie Overmyer, an English and journalism teacher at Clyde High School.

"People in neighboring towns say 'I can't believe you still live there,'" said the mother of two. "You can't pick up your life and move every time there's something that scares you."

Enrollment numbers at area schools haven't dropped and real estate agents say they haven't encountered anyone who doesn't want to look for homes in the area or is desperate to get out.

"Clyde is small enough that we would really know if that was happening," said City Manager Paul Fiser.

Ohio health and environmental regulators have speculated the cause was environmental and may have come and gone — maybe a chemical from a factory or a dump that polluted the air or water.

Air and water samples have not revealed any concerns around the Whirlpool plant or the Vickery Environmental waste site just outside town, where hazardous chemicals are injected into rock a half-mile below ground.

And in September, investigators said they found no radiation from homes, schools, or industries to link to the illnesses, ruling out the Davis-Besse nuclear plant, about 20 miles from Clyde, and NASA's former nuclear reactor near Sandusky as a possible source.

Doctors also have been vigilant, making sure they're not missing any signs or symptoms in young patients. And parents are more likely to bring their kids in for checkups instead of waiting for an illness to go away.

"You still have to treat common things first," said Dr. Daniel Herring, who has a family practice in Clyde.

"But it's definitely one of the things we worry about more."

What's stumped investigators is the lack of any common threads among the children — all of them don't live in the same neighborhood, go to the same school or drink from the same water. They don't all have the same type of cancer or even parents who work at the same factory.

State health officials have spent recent months asking the sick children and their families dozens of questions about their homes and health histories, hoping to find a link. A report due soon will reveal whether they found any connections among all or some of the children, Indian said.

Some parents think it's likely that investigators will never identify a cause.

In a way, it's not a surprise.

Pinpointing the cause of a cancer cluster rarely — if ever — happens.

During the 1960s and '70s, the U.S. Centers for Disease Control and Prevention investigated 108 cancer clusters around the United States, most of them childhood leukemia. But they found no definite causes for any of them.

The CDC has since allowed states to take the lead investigating almost all suspected clusters while still offering some oversight, as the federal agency is doing in Ohio.

The outbreak around Clyde is only 50 miles north of another cluster that Ohio health officials spent four years investigating. Beginning in the late 1990s, nine former students from River Valley High School in Marion were diagnosed with leukemia.

Tests found toxic chemicals in schoolyard soil and students were relocated to new buildings miles away. Investigators never definitively linked the cancers to the old school site, a former World War II Army depot where wastes and solvents were dumped and burned.

The nation's most intensive investigation ever of a cancer cluster began nine years ago in western Nevada and remains inconclusive. Hundreds of state and federal experts have spent millions investigating the leukemia that sickened 17 children and killed three between 1997 and 2004.

Some parents of Clyde area's sick children question whether the state's inquiry has been thorough enough. They point out that there's been no soil testing or requests for experts from CDC to join the investigation.

"Why haven't they brought all minds to the table?" said Warren Brown, whose 11-year-old daughter, Alexa, died of brain cancer in August 2009. "Why not throw everything at it?"

Investigators insist they've ignored nothing. Soil testing wouldn't reveal any answers, they said, because the sick children come from a widespread area and all would have needed to come in contact with contaminated dirt.

Ohio Environmental Protection Agency Director Christopher Korleski said the state has consulted with federal health officials throughout the investigation and that they've signed off on the steps Ohio has taken.

The investigation is his top priority.

"It is disappointing and frustrating to not know," said Korleski.

Brown wishes there were somebody to blame.

He's been careful not to point fingers and doesn't want the town to suffer. But he also said he wouldn't hold back if something here was the cause.

"I'd be yelling at the top of my lungs to leave town," he said. "I can't do that."

Brandy Kreider, a mother of five children, said she and her husband spent an agonizing week and sleepless nights wondering if they were making a mistake before buying a new home in town two years ago. In the end, leaving didn't feel right.

"Those things don't want to make us retreat," she said. "They bring us together."

The Hiseys faced the same question almost five years ago when daughter Tyler Smith, who's now 17, was diagnosed with acute myeloid leukemia.

They put their house up for sale even though it had everything they wanted: ponds for fishing, a woods for hunting and plenty of space. They're now glad it didn't sell.

The outdoors surrounding their home has become a sanctuary for Tanner, 12, diagnosed with acute lymphoblastic leukemia two years after his sister was sickened.

Chemotherapy has kept him out of school most of this year so home is where he spends much of his time. It's where he can catch catfish, watch deer romp across the fields and still be a kid.

"Everything else has been taken away," his father said. "We can't take their support, their comfort and their home away from them."

U.S. apologizes to Guatemalans for secret STD experiments By Brett Michael Dykes

By Brett Michael Dykes

U.S. scientific researchers infected hundreds of Guatemalan mental patients with sexually transmitted diseases from 1946 to 1948 -- a practice that only came recently to light thanks to the work of an academic researcher. On Friday, Secretary of State Hillary Clinton and Health and Human Services Secretary Kathleen Sebelius issued a formal apology to the Central American nation, and to Guatemalan residents of the United States.

"Although these events occurred more than 64 years ago, we are outraged that such reprehensible [hidden, secret] research could have occurred under the guise of public health," said Clinton and Sebelius in a joint statement. "We deeply regret that it happened, and we apologize to all the individuals who were affected by such abhorrent research practices."

The discovery of the long-ago experiments stems from another, far better known episode of federal tampering with test subjects to study sexually transmitted diseases: the long-running "Tuskegee experiment," studying 399 poor black men from Macon County, Ala., who had been diagnosed with syphilis but never informed of their condition. Federal scientists simply told the men they had "bad blood" and researchers compiled a four-decades-long study monitoring "untreated syphilis in the male Negro." Researchers never treated the illness over its usually fatal course, even after the simple remedy of penicillin was shown to be an effective syphilis treatment; participants received only free meals and medical exams, together with federal funding of their funeral expenses after they died. The study began in 1932, continuing right through to 1972, when it was exposed in media reports.

One of the better-known experts on the Tuskegee scandal is Susan Reverby, a professor of women's and gender studies at Wellesley College who has published two books on the subject. As she was researching her most recent book, Reverby learned of the Guatemalan project, in which researchers from the U.S. Public Health Service conducted experiments on 696 male and female patients housed at Guatemala's National Mental Health Hospital. The scientists injected the patients with gonorrhea and syphilis -- and even encouraged many of them to pass the disease on to others.

"It was done in conjunction with the Guatemalan government," Reverby told The Upshot in a phone interview Friday morning. "They had permission from the Guatemalan government."

Reverby explained that she learned of the Guatemala study purely by accident.

[Related: Japan offers big apology to South Korea]

"I was in the archives of the University of Pittsburgh looking at the papers of the surgeon general at the time," Reverby said. "And the papers there were also the papers of a man named John Cutler, who had also been involved in the Tuskegee study. When I opened the boxes of the Cutler papers, there was nothing in it about Tuskegee, but there was everything about this Guatemala study."

Reverby -- who was instrumental in getting former President Bill Clinton to offer an apology for the Tuskegee experiment in 1997 -- told us that she informed Dr. David Sencer, the former head of the Centers for Disease Control; Sencer then passed the discovery up the chain of command in the U.S. government.

"As with many of these things, it was just pure serendipity," Reverby said. "I was the right person in the right place at the right time."

(Photo via AP)