Four years ago surgery took away Curtis Weeks’ voice, but he is still determined to make himself heard by the provincial government.
The Chilliwack man says B.C.’s PharmaCare program isn’t covering essential medical supplies for a group of people he calls ‘Larys.’
“They keep telling me there’s no money, no money, no money,” he said.
Larys are people who’ve had a laryngectomy, a surgery that removes some or all of the larynx (or voice box). Weeks had the operation to get rid of cancer, leaving him with a hole in his throat, called a stoma. The 81-year-old had a voice prosthesis inserted during his operation that lets him speak in a raspy whisper-like way. When he wants to talk, he pushes a finger into a valve/air filter (HME or Heat Moisture Exchange) that is inserted into a base plate that covers the stoma.
The voice prosthesis needs to be replaced every two to six months. The base plate is held in place with adhesive backing, and both the plate and HME need to be replaced at least once a week. Usually more.
Therein lies the problem because currently none of these is covered by PharmaCare.
For people who have coverage through work? Not a problem. For Larys who aren’t so fortunate, it’s an out-of-pocket expense that can range from a few hundred dollars a month to more than $1,000.
“If I didn’t have this, I couldn’t be talking to you,” the retired mortgage broker said, pointing to the HME. “And I’d be breathing right through the open hole. The cold or hot air and all the fine particulates that are out there like viruses and dust, you name it, it would go straight into my lungs because there’s no way to filter it.
“My life depends on this.”
It seems like a slam dunk that all of it would be covered, but Weeks said that as soon as you leave the hospital after a laryngectomy, “the government is done with you.”
Over the last two years he has tried countless times to get the attention of someone in B.C.’s Ministry of Health. He’s fired off dozens of emails to Health Minister Adrian Dix, Premier John Horgan and others, and he’s spent countless hours on the phone.
All of it fruitless.
“I sent them one email and I said, ‘You guys put masking tape over your mouth and go around like that for one day, just one day, and see what it feels like,” he said. “They didn’t respond.”
After weeks of increasingly terse communication, Weeks received an email from Noah Treacher, director of patient and client relations for the provincial government.
Dated Jan. 18, 2022, it reiterated the ‘no money’ theme, with Treacher noting there was a review completed in 2019 that decided laryngectomy supplies would not be added to the government’s list of eligible benefits.
“The ineligibility for coverage of voice prostheses and associated laryngectomy supplies is not a comment on the value of this treatment, but rather reflects PharmaCare’s ability to cover such treatments within the limits of available resources,” he wrote.
The final paragraph in the letter was even more discouraging.
“While I recognize your continued concerns, I must advise that we have provided all available information at this time. We are unable to respond further on this issue. If you have new questions or concerns, our office would be happy to assist you.”
That’s effectively saying “go away” without saying “go away.”
But Weeks isn’t going away.
“Premier (John) Horgan was going to lay out $800-million to redo the (Royal BC) Museum, and then he cancelled it. So where’s that money going? Give part of that to the laryngectomy community,” he said. “All I want is to have dialogue with them and say look, there’s got to be a solution.
“Don’t just shut it down, because there has to be some way to do this.”
Weeks feels like one voice crying in the wilderness. The community of Larys is small, about 600 in B.C., and so far he’s the only one standing up to fight. The Facebook group he created (facebook.com/groups/335653219842829/user/100052721924599/) is full of posts pleading with others to get involved, but so far, he’s alone.
“I’m just one guy mouthing off in B.C. about laryngectomies, and I guess I’m not making enough noise,” he said. “The laryngectomy community is discouraged because they know the government doesn’t want to do anything and won’t do anything. So they figure, ‘why beat our heads up against the wall.’
“Well, I’ll do it for them.”