Frustration mounts over Horizon's response to deadly disease

When Jeff Deloughery received a letter alerting him to Horizon Health's concerns about his improbable but possible exposure to Creutzfeldt-Jakob disease, he followed the suggested procedure and called the health network's information line.

But the network won't answer his questions, he says.

Deloughery was one of 704 cataract surgery patients at the Moncton Hospital who received the letter from Horizon's risk management department, informing him his surgery may have been performed with the same instruments used on a patient with the fatal disease, also known as CJD.

Deloughery had cataract surgery last May and received the letter Feb. 28. The last line reads: If you have any other concerns, please contact one of Horizon's patient representatives at 1-844-225-0220. Deloughery called.

"Really what I was trying to do was to quantify what the risk was, because really the risk can be quantified. It's a probability and an impact, and with this disease the impact is death."

But he said the person who answered the phone wasn't able to tell him anything he hadn't read in the letter.

"She wasn't providing me any new information," Deloughery said. "This letter says as much by what it doesn't tell you."

Paraphrasing the letter he said, "the person probably had CJD … there are no significant risks of acquiring it, but it's our responsibility to inform you if the event occurs."

"I don't know what that tells me."

He was offered to be contacted by his ophthalmologist and family doctor, to which he agreed. Six weeks later no one has called, but Deloughery doesn't hold the doctors responsible for what happened. He said he wants to speak with someone with knowledge of the two suspected CJD cases. 

"They referred me to the practitioners, but I didn't really want to talk to the practitioners because they don't run the hospital."

Hospital turns to video

Horizon Health Network would not take questions or make anyone available to speak with CBC News.

On its Facebook page, the network posted a video about CJD and what happened at the Moncton Hospital, but Deloughery said that's not good enough.   

"Transparency means I get to talk to a human being … we can trade questions and answers back and forth." 

"Transparency is not one-way, a video is one-way."

CJD is a rare but deadly form of dementia.

According to Horizon's YouTube video, the first patient with CJD was diagnosed after being admitted to hospital in December. About six weeks later, a second patient was diagnosed with CJD.

What Dr. Gordon Dow, in the video, calls "even more unlikely," both patients had undergone cataract surgery weeks before their CJD diagnosis. 

The second patient was already showing signs of the disease before the cataract surgery, Dow says in the video.

Different categories of CJD

According to the Alzheimer Society there are three major categories of the disease.

Sporadic CJD accounts for about 90 per cent of all cases, affecting older people without warning or explanation.

Ten per cent of cases are caused by a genetic mutation, and the rarest form is transmitted by either a medical procedure involving human tissue, or exposure to bovine spongiform encephalopathy, more commonly known as mad cow disease.

Symptoms of CJD can include visual disturbances, constant pain, poor co-ordination and mobility, memory loss and behavioural changes.

At least 43 people tried to get information

On April 8, Horizon Health posted on its website that 43 people had contacted the health authority "to learn more about potential risks." 

If that number has risen since the issue was widely reported in the media, Horizon isn't saying.

Deloughery expects to return to the Moncton Hospital to get cataract surgery on his other eye. He said he still has confidence in his doctors but feels less sure about the hospital's administration. 

"Obviously, given this, I'm going to be asking some questions now."

The Creutzfeldt-Jakob Disease Surveillance System shows one person has died of CJD this year in Canada, but the Public Health Agency of Canada won't specify which province the patient lived in "because of patient confidentiality."