We are so grateful to Desarae Mueller-Fichepain, whose father’s story was featured last week in the article written by reporter Matthew Hansen. And we are grateful to Mr. Hansen, who we got to know when he joined us to take a tour of one of the four factories operated here in the state by our corporate colleagues BD (Becton, Dickinson and Co.).
These exchanges, advocate to reporter and reporter to readers, are essential ones. Continued education and reeducation on proper injection safety is vital. What happened to Desarae’s dad, Mr. Emil Mueller, should not happen to anyone here in the United States—or, we think, anywhere in the world.
It is our honor to share the article, published in the Thursday, December 11, Omaha World-Herald. We thank Desarae, and all of the HONOReform advocates, for their openness, leadership and support.
Hansen: In massive hepatitis C outbreak in Fremont, the victims’ voices went unheard
Emil had fought off prostate cancer for a decade, battled it in the same steely way that he made it through each shift at Fremont’s Hormel plant. He clocked in at the plant each morning. He picked up his knife. He cleaved the fat off of giant, immovable slabs of ham.
Day after day. Year after year. No excuses. No complaining. That’s how Emil worked. That’s how he lived.
And then, in 2000 or 2001, Emil began to see the new oncologist in town, a doctor by the name of Tahir Ali Javed. He’s a nice guy, he told his daughter, Desarae.
But within months, Emil began to change. The color started to fade from his cheeks. His grit faded, too.
“We didn’t understand what was wrong,” says Desarae Mueller-Fichepain. “They said it was the cancer. But we don’t know. I guess we never will.”
Emil Mueller was one of 99 Fremont residents — most of them middle-aged or elderly cancer patients — that Javed and his nurses infected with hepatitis C during what became the worst outbreak of its kind in American medical history. That’s right: Fremont was the site of the worst health-care-transmitted hep C outbreak in our country, ever. And even more shocking than that fact is this one: More than a decade later, not a single person has gone to jail for it. Not one.
I have already written about the infuriating case of Dr. Javed, how he fled to his native Pakistan and has escaped any real criminal or civil penalty. I have already written about the Nebraska Attorney General’s Office, which now, years too late, has opened a criminal investigation into the case and is targeting only the faraway Javed, not the oncologist’s head nurse or other nurses who live in Nebraska.
But today I want to focus on Emil Mueller, one of 99 sick people forced to live at the center of a controversy they didn’t create and never wanted.
Javed and his nurses victimized Emil and the others. And then the medical establishment, the courts and even the hep C patients’ neighbors made them feel like outcasts in their hometown.
I want to focus on Emil, because he and 98 others have never gotten the justice they deserve.
“It’s like you get hit once, and while you are down, other people start to hit you,” says Emil’s daughter. “You are already in pain, already weak. And it keeps coming.”
The Mueller family’s horror began with a letter that arrived in their mailbox. It was a form letter, sent to anyone who had been a patient at Dr. Javed’s cancer clinic.
You may have been exposed to hepatitis C, the letter said. You need to get tested.
And so Emil, his wife and another relative who had been treated in Javed’s clinic dutifully did as they were told. Emil’s wife, who had never been Javed’s patient but was worried that contact with her husband had infected her, tested negative for hep C. So did the relative.
Emil’s test: Positive.
He had contracted the dangerous and sometimes deadly infection because Javed’s head nurse and other nurses, allegedly under orders from the oncologist, had repeatedly failed to change the syringe while cleaning cancer patients’ ports using a community saline bag. Patients told state investigators that the saline bag would be clear in the morning, and swimming with pink particles in the afternoon.
Emil, then 71 and already weakened by cancer, had contracted an infection that can sicken even young, otherwise healthy patients for months or years.
And arguably worst of all, Emil had contracted an infection that the public links to both drug addiction and sexual promiscuity. (Drug addicts sharing needles do account for many hep C infections. Contrary to popular opinion, sex rarely transmits the infection.)
The rumor mill exploded in Fremont as hundreds of people in town received letters and got tested. Who had hepatitis C? And could other people catch it?
Some friends of Emil and his wife refused to go to restaurants or other public places, wrongly fearing that you could catch hep C simply by coming into physical contact with an infected person. And for weeks, Emil wasn’t allowed to kiss his young grandchildren hello or goodbye — Emil’s wife wrongly feared that a kiss could transmit the infection.
For a time, Desarae and her mother actually kept the news of the positive test from their father, fearing that telling him would damage his already failing health. They would wait until he felt better, they decided.
But that plan got ruined in the media firestorm surrounding the outbreak, when Desarae says a local TV camera crew filmed the individual reports that comprised a potential class-action lawsuit, dramatically spread the reports out on a table … and zoomed in the camera on the public document bearing the name Emil Mueller.
“We had to tell him then, because it was on TV and anyone, any of his friends, could have seen it,” she says.
“How did he react when you told him?” I asked.
In Fremont, rumors about that lawsuit spread as quickly as the fearful rumors about hepatitis C.
People worried that the Fremont hospital might be wounded or even have to close. People worried that a large payout could cost the state’s taxpayers as much as $115 million, a fear stoked by state officials and leaders at the Nebraska Medical Association, who said the case could bankrupt a state medical liability fund and increase Nebraskans’ health care costs.
The victims and their families believe that state officials, the media and the public focused so much on the money that they forgot about who had been victimized in the first place.
These were gravely ill cancer patients, many of whom now felt like lepers in their own community. And they felt ashamed, because some people saw them as greedy.
“They made us sound like we were trying to grab money,” Desarae said. “It was infuriating.”
The vast majority of the victims never went public with their frustration. The judge in the case — the man who would decide how much money the victims would get from a state liability fund — had ordered them to stay quiet. And, like Emil, many of the victims were people who had no interest in cannonballing into the controversy.
They just wanted the story to go away. But, perversely, that quite understandable and wholly Nebraskan feeling meant that news stories tended to include the voices worried about the potential settlement, but not the voices of the victims themselves.
In the end, the state liability fund didn’t pay the 80-odd victims who joined the hepatitis C lawsuit $115 million. Not even close.
The actual sum: $12 million.
That comes out to an average of roughly $150,000 per victim, money which was largely spent on expensive medical care tied to the hepatitis C they had done nothing to deserve.
The Fremont hospital did not go broke. State taxpayers didn’t have to kick in a dime — the state liability fund, funded by medical providers for exactly this purpose, covered the cost.
Emil’s family ended up receiving far less than the average, only roughly $40,000. Why?
Because, in April 2004, Emil Mueller died. He died and thus didn’t need any money for continued hep C medical care, a lawyer explained to the family following the judge’s ruling.
His official cause of death was prostate cancer, but his family isn’t so sure. Would he have lived another year if he hadn’t been infected with hepatitis C? Would he have had another year or two with his grandchildren?
A decade later, that doubt nags at Desarae. So does this: Dr. Tahir Ali Javed is a free man in Pakistan, where he has served as a minister of public health. His freedom stands in stark contrast to other medical professionals associated with hep C outbreaks, who often spend decades or even life in prison. Javed’s head nurse and other nurses have never been criminally charged, either, even though they allegedly were the ones who repeatedly injected Fremont cancer patients using dirty syringes, a grievous, first-day-of-nursing-school type of error.
Emil Mueller’s daughter isn’t sure why the Nebraska Attorney General’s Office reopened the case a dozen years after the first evidence of the hep C outbreak appeared. But she is sure what she wants.
“Justice,” she said. “All of us, all the victims, all the family members … we’re looking for justice.”
Contact the writer: 402-444-1064, email@example.com, twitter.com/redcloud_scribe