CJD risk tortures brain cancer patient
Contamination, discrimination . . . Danielle Lambermon is at breaking point, writes Nikki Macdonald
Five years after 43 surgery patients were warned they might have been infected with Creuzfeldt-Jakob Disease from contaminated instruments, some are still reeling from its impacts. For Aucklander Danielle Lambermon the exposure might yet cost her her life.
Like others, the 26-year-old says she has been shunned by dentists, because of a fear of infection that an Australian CJD advocate rejects as ignorant discrimination.
Worse, she is too scared to undergo further surgery to remove the two-thirds of the brain tumour left behind after the 2007 operation that led to her CJD exposure.
"I hate being in hospital," Miss Lambermon said, sobbing. "I'm supposed to have another operation and really don't know if I'm going to. I don't think I can handle this any more."
Miss Lambermon was one of 43 patients told in April 2007 that they were at risk of fatal brain disease CJD, after an Auckland Hospital patient died of the disease following surgery.
The form of CJD involved, which is different from mad cow disease, is caused by hardy prions that can survive normal sterilisation procedures.
Hearing the news while still recovering from largely unsuccessful brain surgery tipped Miss Lambermon further into depression. Five years on, without further surgery, the cancer has progressed.
"It has cost her her life, basically," Miss Lambermon's mother Monique said. "Words can't explain how it makes me feel."
Another unexpected consequence was that dentists would not treat Miss Lambermon, because of infection concerns. About a month ago she ended up at Auckland Hospital's emergency department with a snapped tooth, after an untreated cavity got progressively worse. Greenlane Hospital's dental department has agreed to treat her, but that involves conquering her hospital fear.
Mangawhai resident Trish Gardner's son Ben, now 29, was one of the first operated on after the CJD patient. When he needed root canals their local dentist said he could not treat him. Auckland Hospital helped find him another dentist and contributed $500. But instead of root canals, which might have been an infection risk, he has now had six teeth removed and requires $8000 of remedial work he can't afford.
"We just felt a bit abandoned," Mrs Gardner said.
Australian CJD support group network national co-ordinator Suzanne Solvyns said denying dental treatment showed "appalling ignorance".
Herself at risk of getting CJD after accidental exposure, she had no trouble accessing dental care in Australia. Newly issued Australian infection control guidelines meant low-risk patients could receive any routine dental treatment, including root canals, Mrs Solvyns said.
Dental Association chief executive David Crum said uncertainty still surrounded the patients' risk and infection control status. Until clear New Zealand guidelines were established Auckland Health Board should instruct patients on how to get safe care.
An Auckland District Health Board spokeswoman said the board believed community dental practices should be able to provide routine care, but they had provided dental treatment for at least one patient who had not been able to get community treatment.
Miss Lambermon, her mother, Mrs Gardner and Mrs Solvyns all criticised Auckland Hospital's lack of initial and ongoing support.
Asked what the health board had done to keep track of, and provide ongoing support to, the 43 patients, the spokeswoman said follow-up varied from case to case. CJD risk management had been changed to minimise the risk of the surgical contamination being repeated.
The Dominion Post