Woman's health 'sliding backwards' after drug coverage pulled

Like breathing through a straw.

That's how Janice Namiesniowskidescribes her daily struggle for air since developing asthma in her early 30s.

Now 63, Namiesniowski, a retiree living in Ottawa's Orlans neighbourhood with her husband Conrad, has been managing her condition with a series of corticosteroid inhalers, but her lung capacity first measured at 30 per cent only deteriorated.

"Over time, it's just progressively gotten worse and worse, and all doctors have been able to do up till this point is just throw another inhaler at me," Namiesniowski said.

Then last year, an allergist suggested she try Xolair, an injectable drug used to treat moderate to severe asthma in patients for whom inhalers just aren't doing the job.

The drug is pricey $2,264.70 per treatment, with an injectionevery two weeks. It's covered by OHIP, Ontario's public health insurance program, but only for residents over 65.

• This week CBC Ottawa will be sharing more stories of public servants affected by the switch to Canada Life. If you'd like to share your storysend us an email.

A 'hallelujah' moment

Luckily Conrad Namiesniowski, who retired in 2019 with the rank of colonel after a 42-year military career that took the couple around the globe, was covered under the Public Service Health Care Plan (PSHCP).

They'd still be required to pay 20 per cent out of pocket $452.95 per treatment or about $900 per month but the couple, who had recently finished paying off their mortgage, decided they could afford to give Xolair a shot.

Janice began treatments in January, and by March her pulmonary capacity had risen to 46 per cent.

"I was starting to see some significant improvement," she said. "So that was like, hallelujah!"

Conrad noticed the improvement in his wife's health, too.

"I noticed quite a difference in her energy, her ability to talk without wheezing, her ability to walk up stairs without having to pause," he said.

TheNamiesniowskis are among 1.7 million federal workers, retirees and their dependents who are eligible for benefits under the PSHCP.

Canada Life took over administration of the plan on July 1, and with it came changes to what's covered, how claims are approved and how members can communicate with agents.

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The Treasury Board of Canada Secretariat, which oversees labour relations between the federal government and the public sector, said changes to the planincluding claim limits, coverage terms and eligibility were approved last fall,independent of the switch to Canada Life.

Those changes came into effect after Canada Life won a tender to administer the PSHCP.

WATCH | Treatment thrown off after coverage changes with Canada Life:

She couldnt afford her asthma treatment after coverage changes with Canada Life

11 months ago

Duration 3:47

Janice Namiesniowski was feeling hopeful when she started treating her asthma with Xolair, an injectable drug that costs $2,264.70 per treatment. But she cant afford it unless its partially covered under her insurance plan, and her coverage was suddenly cut off when Canada Life took over the Public Service Health Care Plan in July.

Communication breakdown

In July,theNamiesniowskis learned theirXolair coverage had ended suddenly and without explanation. They tried again two weeks later, but their claim was rejected before the prescription could be filled.

Unable to afford the full cost of the drug, Janice hasn't had aXolair treatment sinceJune 28, and has since noticed her health deteriorating again.

We were very active, and that's been taken away from me.- Janice Namiesniowski

"I'm losing it," she told CBC."We're sliding backwards, and it's very frustrating."

Adding to the couple's frustration was a complete lack of communication from Canada Life. Despite countless hours spent waiting on hold and numerous emails sent, they wereunable to find out why their coverage ended.

"I have heard nothing from any of those attempts," Conrad said.

"It's a helplessness and hopelessness, because at the end of the day if you can't talk to somebody, if you can't get a response from an email, if you can't connect by chat you're left hanging, and we're at our wit's end."

Numerous Canada Life clients covered under the Public Service Health Care Plan have described similarly frustrating experiences.

The couple had their doctor re-submit a pre-authorization form for Xolairto Canada Life in August, but received no indication it hadbeen received.

"It's just been no communication, so we have no idea what's going on," Janice said.

Canada Life responds

On Tuesday evening, just hours after CBCcontacted Canada Life to inquire about the couple's predicament, the companyemailed them to acknowledge "that there may have been an access issue" with Janice's medication and promising to resolve the situation.

An agent followed up with a phone call on Wednesday confirming their Xolair coverage would be reinstated.

In an email to CBC on Tuesday, a Canada Life spokesperson said the company is"aware that in some cases, exceptional coverage over and above the plan design was granted to individuals."

For that reason, the company said it has "established a special team of claims examiners to review declined claims and ensure those who were granted exceptions previously continue to receive coverage for the medications and treatments they need."

Canada Life did not specify whether it considers coverage for Xolair to be "exceptional," or why it may have suddenly ended in certain cases.

A discouraging experience

For Janice, who was beginning to regain her health only to watch it deteriorate again, it has been a discouraging experience.

"We were very active, and that's been taken away from me," she said.

Conrad said he's waiting to see if Canada Life will deliver on its promise, adding the couple shouldn't have hadto go public to get results.

"I would have thought that if somebody was on some kind of medication you would continue to give them that medication, and if it changed that it was no longer authorized or that you questioned it that you'd reach out before you cut it off," he said.

He also worries for families who may have even more serious health concerns, but who don't have the time or resources he has to resolve their issues with the insurer.

"I'm fearful for the future as this goes on and arbitrary decisions are being made that affect people's lives," he said.