Michelle Fuller lost her right eye, cheekbone, some upper teeth and part of the roof of her mouth to cancer. A medical device made of metal and plastic allows her to speak, swallow and eat.
The prosthetic, called an obturator, is overdue for replacement but Fuller doesn’t know who will perform the surgery or who will be responsible for her ongoing care.
Fuller, 55, of Canmore, Alta., is preparing to seek privatized care for the procedure due to uncertainty surrounding an Edmonton clinic that she has relied on for decades.
She is among a group of head and neck cancer survivors growing increasingly concerned about continuity of care at the Institute for Reconstructive Sciences in Medicine (iRSM), operated by Covenant Health in partnership with Alberta Health Services.
Officials with Covenant Health say the clinic is not shutting down and that privatization is not being considered.
But long-term patients say physician contracts have been phased out, and the impending loss of the last remaining specialist on staff — a maxillofacial prosthodontist — has left them in limbo.
“I have to speak out because this issue is larger than me,” Fuller said. “I need to advocate for those people who don’t have a voice.”
The iRSM clinic, based at the Misericordia Community Hospital in west Edmonton, provides highly specialized, publicly-funded services to people in need of facial and dental reconstruction following invasive cancer surgeries.
The clinic and research institute was established in 1993 as part of a joint initiative with the University of Alberta.
The institute has operated for decades, reconstructing jaws, teeth and facial bones destroyed by cancer, and helping patients live with the lasting damage caused by the disease.
‘Absolute silence’
Bernie Krewski, an Edmonton man who survived throat cancer, said the clinic has been phasing out contracts and quietly clawing back services for months.
He said no new patients are being accepted despite a waitlist that is now more than five years long with at least 150 patients waiting for care.
“They have told us nothing,” said Krewski, who spoke with CBC with assistance from his wife, Patricia Siferd.
“Officials at Covenant Health, each of them seemed to have had a laryngectomy and can’t speak. It’s absolute silence.”
Fuller has been a patient at iRSM since 1999. She was diagnosed with cancer at age 30.
She had noticed a patch of numbness under her eye, then a sharp pain in her cheek. A carcinoma was found in her sinus cavity.
She underwent a 15-hour surgery to remove her right eye, her cheekbone, part of the roof of her mouth and some teeth. Weeks of radiation caused further damage to her mouth.
She is now cancer-free but her obturator requires regular maintenance and will need to be replaced and adjusted repeatedly throughout her life.
Her current prosthetic, after decades of wear, is now at risk of causing infection.
Fuller said that in May, at her latest appointment with the clinic’s maxillofacial prosthodontist, she learned that it might be her last. She said she was told that after June 30, the prosthodontist’s contract will come to an end and that no replacement has been arranged.
With so few specialists in the field, Fuller fears she may be forced to pay out of pocket for the care she needs, or possibly travel to the U.S. to find a specialist capable of caring for her.
The costs of her procedures at iRSM have been covered, but she worries that may change if she switches providers. Fuller said she would be willing to pay for the reconstruction procedure with a personal loan if it came to that.
Covenant Health has not commented on how private care could affect coverage for patients departing iRSM.
The clinic is one of the few reconstruction clinics of its calibre, and specialists in the field are rare. Fuller said closing it would create a crisis for hundreds of vulnerable cancer patients, she said.
“We’re talking about necessities for life,” she said. “My ability to speak and eat are at play.”
AHS declined to comment for this story. Covenant Health, a Catholic health-care provider, said the continuance of care is a priority.
“IRSM remains open, is not privatizing, and continues to provide care for its current patients,” Covenant Health said in a statement.
“Health care in Alberta continues to face workforce challenges, especially for specialized clinicians, and iRSM is not immune to these impacts.”
Covenant Health declined to answer questions about the pending departure of the maxillofacial prosthodontist, citing privacy reasons.
It declined to say how many people are waiting for care but said staff are working to refer patients to other specialists.
“Many iRSM services continue uninterrupted and there is no anticipated surgical delay for patients with disease or trauma to their head and neck,” Covenant Health said.
“We are currently recruiting some specialists for iRSM’s multidisciplinary team, and we are seeing patients as we have capacity to do so.”
What are we going to do? Who is going to care for us?– Brenda Frederick
Brenda Frederick, 67, a patient at the clinic for more than two decades, doesn’t know when she will return.
“It’s shocking,” she said. “What are we going to do? Who is going to care for us?”
Frederick became a patient 23 years ago after she was diagnosed with bone cancer. The right side of her upper jaw and cheekbone were removed in an 18-hour surgery.
Bone from her leg and hip was used to reconstruct her face. Surgical posts were installed in her mouth so she could be fitted with a prosthetic.
Her face bears no obvious scars but inside her mouth, the trauma remains.
The surgical site is highly sensitive and requires constant care to ensure the fragile tissue remains healthy. Any signs of weakness or infection require immediate and highly specialized care, she said.
She visits the clinic twice a year to be examined to ensure the tissue is still viable. She also has the area cleaned.
She said she is concerned about her health in coming years. She has struggled with infections in the past and has been told the surgical posts in her face will eventually require repair.
“When I go to my dentist for my regular cleaning, the hygienists are usually scared to touch that area of my mouth,” she said. “It’s far beyond the average dental care.”
She said that during her most recent visit to the clinic, she was told that she would be unable to book another appointment — the first time in 23 years she has left the building without one.
She said the statement from Covenant Health has not reassured her.
“The thought of the clinic not continuing, it’s just unbelievable,” she said.
“I don’t think patient welfare was considered and we’re just left wondering.”
Krewski, 84, was diagnosed with throat cancer in 2004. A year later, he had a laryngectomy — surgery to remove his voice box that left him with a stoma, an open hole, in his throat.
Thirty-two radiation treatments left his teeth crumbling. All were extracted. He lost 50 pounds, and was left unable to speak for more than a year.
He got dentures but they were ill-fitting and painful. He ate pureed food for the next seven years and spent most of his time alone at home, taking solace in books.
Finally, in March of 2014, he became a patient at iRSM. After years of isolation, Krewski said the care he received changed his life.
Rehabilitation to his damaged mouth began and he was given dental implants. An oral prosthesis improved his speech and allowed him to eat solid food.
After years of silence and isolation, he became a patient advocate. He was asked to sit on the clinic’s waitlist committee and help others navigate their care.
The clinic gave him dignity and purpose, but he now feels discarded by the health-care system, he said. He has launched a petition calling for transparency and for the clinic to be maintained.
He fears privatization and is fearful for his fellow patients, many of whom are vulnerable and voiceless.
“People can suffer in silence for years,” he said. “I just have the satisfaction of knowing that there are remedies, if there is any kind of political will.”
