FORSYTH COUNTY, N.C. – Novant Health Forsyth Medical Center announced Monday they are reaching out to 18 neurosurgery patients exposed to Creutzfeldt-Jakob disease, a degenerative neurological disorder that is incurable and invariably fatal.
“Today we are reaching out to 18 neurosurgery patients who were exposed to Creutzfeldt-Jakob disease over the last three weeks at Forsyth Medical Center,” said Jeff Lindsay, President of Forsyth Medical Center.
According to the National Institute of Neurological Disorders and Stroke, Creutzfeldt-Jakob disease (CJD) is a rare, degenerative, invariably fatal brain disorder.
CJD affects about one person in every one million people per year worldwide.
“While the CDC categorizes such risks as “very low,” any risk of transmission is simply unacceptable,” said Lindsay. “On behalf of the entire team, I apologize to the patients and their families for this anxiety. We are committed to providing support to patients and their families.”
CJD has been closely associated with mad cow disease (Bovine spongiform encephalopathy), however Dr. Jim Lederer said this particular strain is not associated with mad cow disease.
“The patient had sporadic CJD. This is important to note, because it is often incorrectly associated with mad cow disease. It is not,” said Dr. Jim Lederer.
“On January 18, an operation was performed on a patient with symptoms that could have been attributed to CJD. There were reasons to suspect this patient may have CJD. As such, extra precautions to clean equipment should have been taken but it was not,” said Dr. Jim Lederer.
Forsyth Medical said the exposure occurred through surgical instruments that were not properly sterilized.
The surgical instruments used during the surgery were sterilized using standard hospital procedures, however they were not subjected to the enhanced sterilization procedures necessary on instruments used in confirmed or suspected cases of CJD.
“I have a two year old to live for and mommy might not be here,” said Amanda Morin, who entered Forsyth Medical Center last month for back surgery. She says a hospital staff member contacted her Monday saying she is one of 18 patients who may have been exposed to the disease. “[Novant staff member] say that it’s not the hospitals fault but they are taking full responsibility.”
Morin says the unknown is what will keep her awake at night for decades to come. Doctors say it is rare that the exposed patients will develop the disease, but if the disease surfaces in patients it likely won’t happen for 20 to 30 years.
“I am angry; very, very angry something so little could cost me my life. I want grandkids; I want to be there for them.”
Novant Health says they will keep tabs on the health of the 18 patients watching for any signs of the disease for the rest of their lives.
According to the CDC, prions, the infectious agent of CJD, may not be inactivated by means of routine surgical instrument sterilization procedures.
The World Health Organization and the US Centers for Disease Control and Prevention recommend that instruments used in confirmed or suspected CJD cases be immediately destroyed after use; short of destruction, it is recommended that heat and chemical decontamination be used in combination to process instruments that come in contact with high-infectivity tissues.
According to the CDC, no cases of iatrogenic transmission of CJD have been reported since 1976, when current sterilization procedures were adopted.
“We believe the chances of transmission to another person is very, very low,” said Dr. Jim Lederer.
The operation at Forsyth Medical was performed on a patient that was “suspected and later confirmed” to have sporadic CJD.
In a news conference, Forsyth Medical officials said the disease has no cure and may not show up in exposed patients for decades.
CJD usually appears later in life and runs a rapid course. Typically, onset of symptoms occurs about age 60, and about 90 percent of individuals die within 1 year.
In the early stages of disease, people may have failing memory, behavioral changes, lack of coordination and visual disturbances. As the illness progresses, mental deterioration becomes pronounced and involuntary movements, blindness, weakness of extremities, and coma may occur.
The Department of Health and Human Services issued a statement on Monday.
“DHHS officials are aware of the incident at Novant Health Forsyth Medical Center and have been in contact with the facility. Our primary concern is the health, safety and welfare of patients, and we will continue to closely monitor the situation” said Kevin Howell, DHHS spokesperson.