PharmaCare fight ends in win for B.C. amputees denied new limbs

Kia Johnsen will soon be able to walk on two feet again, one real and one artificial.

She's finally won her battle to have the replacement of her worn-out artificial leg covered under B.C. health care —something denied to her and others who underwent ground-breaking surgery to have prosthetics attached directly to their bodies.

"It's even better than Christmas," said Johnsen, 46. "When I first got the call, I cried like a baby, actually sobbed."

But she still shakes her head at the absurdity of the situation.

While one section of the B.C. Health Ministry, the Medical Services Plan, had approved and funded the expensive surgery, another section, PharmaCare, refused to pay to maintain the recipients' prosthetics after the procedure.

The prolonged fight with PharmaCare — the Health Ministry program which assists British Columbians with medical supplies as well as prescriptions — has taken its toll.

The delay meant her prosthetic leg finally wore out, forcing Johnsen onto crutches and into a wheelchair just to get around her hometown of Prince George.

She suffered repeated falls.

"It's frustrating and depressing. And then you get angry," said Johnsen.

$105K surgery

Johnsen first injured her knee in a skiing accident at the age of 11.

Years of surgery followed — ending in an above-the-knee amputation in 2013. Her fluctuating weight meant a standard prosthetic kept falling off. Her good bone density, however, made her a candidate for a revolutionary procedure being pioneered in Australia.

Three years ago, Johnsen was among three amputees in B.C. to be flown to Sydney to undergo "osseointegration surgery" at a cost of $105,000 each.

In the procedure, a titanium bar is implanted directly into the bone in the stump— also known as a residual limb — to allow more secure attachment of a prosthetic leg.

Recipients experience better "body connection" to the prosthetic and even report feeling the texture of the ground beneath them.

It's a massive improvement over the old "socket" method of attaching artificial limbs, where a cup is moulded to the shape of the stump and the prosthetic is held in place through suction or straps— which can cause rubbing and open sores.

But there was a hitch.

It was only after the osseointegration surgery that Johnsen learned PharmaCare wouldn't cover the cost of her artificial leg when it broke down, saying it had no policy to deal with maintenance of prosthetics after the new procedure.

Artificial limbs for all patients typically last three to five years — and basic models cost anywhere from $5,000 to $12,000 to replace.

Johnsen says when her artificial knee finally wore out, she was caught in a classic "Catch-22."

"It was like winning the lottery. And then having it stolen," said Johnsen.

'It's retraumatizing'

It took almost three years for PharmaCare to agree to cover new prosthetic limbs for osseointegration recipients, notifying Johnsen and another amputee of the change earlier this month.

Amputee advocates say it's the right decision—but the delay was unacceptable.

"I can't believe it took so long," said Annelise Petlock of The War Amps, based in Ottawa.

"Every time we have to fight as amputees, we have to fight for essentially our arms and our legs. It's retraumatizing," said Petlock, an amputee herself.

'I would give B.C. an 'F'

Another issue remains.

Regular amputees in B.C. have long complained general coverage of prosthetic limb replacement is seriously inadequate.

PharmaCare policy dictates government tax dollars will only be paid out to maintain "basic functionality"— meaning more sophisticated, higher priced prosthetics are not covered.

Plus there are deductibles and a fee structure that critics say hasn't been changed since 2008, setting replacement costs far below current market prices.

It means in B.C., only the most fundamental prosthetics are approved by PharmaCare. And even then, they're only partially funded.

"We think Canadians would be shocked if they learned that if you lost a limb, you wouldn't be appropriately covered by your provincial health care," said Petlock. "I don't think it should be nickel and diming on the back of the amputee."

"I would give B.C. an 'F' because of the 'basic functionality' provision and how insulting that is to amputees in the province."

Petlock says B.C. is the only province that has that provision.

In an email to CBC News, the B.C. Health Ministry says it plans to review its prosthetic policies this fiscal year.

'I'm ecstatic'

Johnsen is just happy to be finally getting any kind of coverage.

She's looking forward to receiving a new prosthetic— something she could never afford on her own.

"I don't really care what kind of knee [I get]. I'm not picky," said Johnsen. "I just want to get up and do what I want and what I need to do. That's the big thing."

"I'm ecstatic."