Book looks into history of hepatitis outbreak

Evelyn McKnight’s nightmare began in 2002.

That’s when the local audiologist learned she was among 99 people infected with hepatitis C while undergoing treatment at a cancer center in Fremont.

That single outbreak -- the largest of its kind in North America at the time -- resulted in 89 lawsuits. Since then, McKnight has co-founded a patient advocacy foundation that calls on lawmakers to mandate better infection control in outpatient settings.

And she’s done something else.

She and attorney Travis Bennington have written a book telling how the outbreak started and about the litigation and patient suffering that followed. The book

details the personal stories of McKnight and other victims along with Bennington’s work in successfully representing 19 of the plaintiffs.

The book is called “A Never Event” -- a term McKnight said is used to describe a preventable medical tragedy. And on Tuesday evening, McKnight and Bennington will have a book signing at Fremont’s Keene Memorial Library. The public is invited to the event which begins at 7 p.m. with a talk during which the authors will tell how they gathered information and wrote the book. They’ll also talk about the patient advocacy foundation, Hepatitis Outbreak’s National Organization for Reform -- or HONOReform.

The goal behind the book and the foundation is to stop tragedies like the hepatitis C outbreak.

“We want the whole country to learn from this,” McKnight said. “Unfortunately these kinds of tragedies continue. Just in the past year, 50,000 Nevadans received a letter similar to what we received.”

In Nevada, patients were told that besides hepatitis C, they also had to be tested for hepatitis B and HIV, because of unsafe practices in a doctor’s office. Similar situations have occurred in Long Island, N.Y., in Michigan and most recently in North Carolina.

“If we don’t look at these outbreaks, study and learn from them, Americans are going to continue to be at risk for contracting deadly diseases through their physicians’ offices and Americans deserve better health care than that,” McKnight said.

At the start of “A Never Event” readers meet Dr. Tahir Javed, a well-educated oncology doctor who began his practice in 1998 at the Fremont Cancer Center. Readers also learn about McKnight, who was diagnosed with breast cancer in 2000, and began chemotherapy at the cancer center. Two years later, she had a recurrence of the cancer. She was found to have hepatitis C while being evaluated for a stem cell rescue.

McKnight said she and her husband, Thomas, a Fremont physician, were stunned by the news because she had none of the risk factors associated with the disease. Then Thomas McKnight discovered that besides his wife, three patients in his office also had hepatitis C.

The common link was all four had been treated at Javed’s clinic.

Thomas McKnight spoke to Javed who said he’d get to the bottom of the situation, but left town 10 days later and returned to his native Pakistan. He has never come back to the United States.

In 2002, McKnight and gastroenterologist Dr. Tom McGinn called for a state investigation which identified 99 victims. Medical officials would learn that outbreak occurred because health care professionals at the Javed clinic reused syringes which passed the virus from patient to patient.

The book -- released Sept. 25 -- looks at the outbreak from a medical and legal standpoint. Of the 99 cases, two people are known to have died of the disease and another victim had to have a liver transplant, McKnight said.

The authors interviewed about 30 people, most of whom were victims, as well as state officials and lawyers. Bennington also had access to the legal depositions of about 50 people whose testimony was taken in the lawsuit.

During interviews with victims, McKnight recalled the hurt that surfaced.

“Some of the victims cried as I interviewed them. We cried together,” she said.

Many victims have battled the pain of isolation along with the disease because of a gag order issued during the legal process.

“We couldn’t discuss what was going on to the media or anyone outside of the cases -- not unless you were legal counsel or a plaintiff,” McKnight said. “We weren’t allowed to talk to our neighbors and friends and were really cautioned about talking to our families.

“When we weren’t able to talk, it was a very isolating situation and we couldn’t gather full support from the community ... I think that really hinders healing and I think that by giving voice to these stories we can promote some healing.”

McKnight also hopes the book will empower patients to ask questions of their health care providers and that people will become motivated to work for health care reform in the U.S.

“We need education for professionals and for patients that syringes are not to be reused,” McKnight said. “We have an educational campaign we hope to kick off soon called The One and Only Campaign -- one needle, one syringe and one vial and only one time.”

Bennington also said medical malpractice isn’t set up to handle outbreaks of this scale and steps can be taken so others won’t have to go through what the hepatitis C victims did -- such as 4 1/2 years of ongoing litigation.

McKnight said the book itself took two years to write, then she and Bennington spent another year defending the book to a literary vetting lawyer and the publishers.

“We had to support everything we said and prove that what we said was all truth because we published it as a non-fiction book,” McKnight said.

An appendix at the back of the book shows copies of legal documents from the case.

These days, McKnight still deals with the symptoms of hepatitis C.

“It’s like having the flu 24-7,” she said. “I foresee that as continuing.”

The hepatitis C virus is the most chronic, blood-borne infection in the United States. It can lead to cirrhosis of the liver and liver cancer.

“A Never Event,” published by Arbor Books of New Jersey, can be purchased at Hastings Book Music and Videos store in Fremont, Evelyn McKnight’s office at 415 E. 23rd St., and at the Web site www.aneverevent.com. Books also will be available Tuesday night at the library. They cost $16.95.