Central N.L. man has plan to fix his painful skin condition. The province won't help with MCP

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He's looking for a normal life, an education, a career and independence. A life where he is not hospitalized every two months due to severe hidradenitis suppurativa.

At age 23, James King has spent more time getting surgeries and in the hospital recovering than most spend in a lifetime. He says he's sick of it.

"It's been a struggle on my well-being, it's been a struggle on my mental health and my physical overall health as well," King told CBC News. "Unfortunately, there's been points where I've been bedridden with this, points where I can't get up with this."

Hidradenitis suppurativa is a long-term skin condition that causes abscesses and scarring on the skin. According to the Canadian Hidradenitis Suppurativa Foundation, the exact cause is unknown, but it occurs near hair follicles where there are sweat glands, usually around the groin, buttocks, breasts and armpits. It affects one to three per cent of the population.

"Patients often suffer for years without effective treatment, leaving them frustrated in addition to helpless and ashamed," the foundation's website states. "Many have stopped seeking medical attention as a result of ineffective therapies."

To treat the disease, King has tried antibiotics, biologics — drugs such as proteins and genes — and injections, but nothing is working. Now he wants to try laser hair removal, but the Newfoundland and Labrador government won't cover the procedure under MCP.

"I've applied for special coverage and they've come back to me [saying] this is a non-insured, non-prior authorized process, and they came back saying that this is something I had to cover out of my own pocket," King said.

Studies support laser hair removal

King has support for using laser hair removal to combat the disease. His doctors have written to the province recommending the treatment as a possible fix, and requesting it be covered under MCP.

Additionally, according to the Mayo Clinic — a large integrated, not-for-profit medical group practice — a carbon dioxide laser can be used to make hidradenitis suppurativa sores go away. After this treatment, the sores are unlikely to return, says the clinic's website, and that laser hair removal can help hidradenitis suppurativa in its early stages. 

The Canadian Dermological Association says laser hair removal, which destroys hair follicles, can help prevent new lesions from forming in hair-bearing areas of the underarms and pubic area.

However, the provincial health department is not considering it at this time. 

Province not talking

No one from the Department of Health was made available for an interview, and the department wouldn't discuss King's case due to privacy concerns.

In an email response to CBC's interview request, the department also wouldn't address questions about laser hair removal as an option for hidradenitis suppurativa patients.

Instead, the statement said the lieutenant governor-in-council establishes insured services in accordance with the Medical Care and Hospital Insurance Act.

"The process to establish new fee codes for physician services is contained in the memorandum of agreement between the Newfoundland Labrador Medical Association and the government of Newfoundland and Labrador," it read. "The MCP Payment Schedule Review Committee … is responsible for receiving applications for new fee codes in order to ensure that the MCP payment schedule includes appropriate fee codes for new physician services that become available in the province, and for the overall maintenance of the integrity of the MCP payment schedule."

In a letter King received from the department, it said MCP often provides funding for "insured virtual and in-person out-of-province consultation and medical services for complex medical cases such as these when conditions of insurability and all legislative and policy requirements for payment are met."

Constantly in and out of hospital

King, originally from Labrador West but now living with his grandparents in Glovertown, says the condition has consumed the past three years of his life. 

"Since January 2024, I've been back and forth and had nine operations, just in this past year alone," he said. "I've had three hospitalizations ranging anywhere from 12 to 37 days in total. And that's just [in] this past year."

The cysts he has had removed are large, up to two fists in size, he said, and they have gone two to three inches deep.

"Down into the muscle layer where, you know, you've gone below that subcutaneous surface. These are completely into the actual flesh itself. You have had to remove the piece of flesh," he said. "This isn't just as simple as cutting into the flesh itself for this disease because there's pockets … and you have to remove the full pocket of the infection."

Moving past it difficult

King wants to get on with his life, to build a career and move beyond the debilitating disease.

"Life definitely has not been easy in the past few years, and I'm definitely trying to work somewhere to get better with it," he said.

He says he doesn't understand why MCP is recommending he go out of province to seek help, when a possible solution of laser hair removal can be done in this province.

He's also looking at hiring a lawyer to fight on his behalf.

King says he's taken an interest in the work of those who have helped him along the way, and would like to study paramedicine if, and when, the disease releases the stranglehold on his life.

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