Parents fear kids' potentially life-saving stem cells stuck in limbo at Toronto company

Parents from across the country are struggling to get hold of their children's potentially life-saving stem cells amid concerns about the Toronto company they've been paying to store the samples for years.

And for at least one of those families, the stakes are already high.

Natasha Bitsakakis-Pack has both of her children's umbilical cord blood stored with the Cord Blood Bank of Canada (CBBC). The Waterloo, Ont., mother started to put more stock in the cord blood after her younger daughter was diagnosed with a rare genetic syndrome as an infant. 

"There doesn't seem to be a lot of data with this syndrome," Bitsakakis-Pack told CBC Toronto. "So for her, if something does show up in the near future or late future, we would hope that we would have her cord blood to use if we had to access it."

In addition to her daughter's condition, Bitsakakis-Pack's own health issues have added to her concerns about the samples. A year ago, she was diagnosed with breast cancer and just finished treatment in June.

CBC Toronto first reported on the Cord Blood Bank of Canada and CEO Bernadette Ellison this summer, when two mothers from Ontario and Alberta raised concerns about the company after learning it had failed a Health Canada inspection in 2015.

• Police investigate Cord Blood Bank of Canada after mom raises questions about Health Canada inspection

As a result, a Greater Toronto Area police service opened an investigation into the Cord Blood Bank of Canada. Police visited one of the company's Toronto locations and found the Cord Blood Bank of Canada did have a lab facility there. Assured that a lab still existed, investigators closed the case in September.

Parents waiting on lab reports

That wasn't enough for Bitsakakis-Pack and other parents interviewed by CBC Toronto. All of them have requested the lab report for their samples from Cord Blood Bank of Canada, as a first step towards moving the samples to another private cord blood bank.

Teresa Sniezek, a client who raised concerns about the Cord Blood Bank of Canada in an earlier CBC Toronto story, was the first of the parents to request her lab report, in July. 

The Grande Prairie, Alta., mom says the company agreed to send the lab reports for her daughters, but four months later, she still hasn't received them. 

None of the other parents have either.

"I've been calling every day. How do they know I don't need my sample?" Bitsakakis-Pack said.

I've been calling every day. How do they know I don't need my sample?- Natasha Bitsakakis-Pack, Cord Blood Bank of Canada client

"They have a certain protocol in their contract about how to go about retrieving your sample if you need it. Nobody's calling me back. No one is answering the phone. It's very unnerving." 

Ellison, refused an interview with CBC Toronto. But Ellison's lawyer provided answers to written questions on her behalf.

The Cord Blood Bank of Canada says it's only required to provide a lab report to clients if they're about to use the sample. But when asked whether Ellison would send clients their requested lab reports, CBC Toronto was told the company was "aiming to send out cord blood confirmations to all clients with accounts in good standing by the end of November."

Lab moves twice in 6 months

CBC Toronto visited the Cord Blood Bank of Canada's location at 688 Coxwell Ave. in Toronto this summer. The company moved to that location in May from another Toronto address where clients had sent their samples.

At the time, the company would not confirm it was the location of its lab facility. In September, a police investigation confirmed there was a lab at the Coxwell location. 

But Cord Blood Bank of Canada moved again at the end of September, and while the company confirms it has moved, Ellison won't tell clients the new address.

"I did ask her straight out why the lab had moved twice. She didn't tell me why," said client Kathleen Cieslak, who left messages for the company every day for three weeks before getting a call back.

"I asked where the new location was. I just really at this point want to know my samples are anywhere, not sitting in a dumpster."

The Mississauga, Ont., woman says Ellison told her she couldn't disclose the location of the lab for employee safety reasons. Cieslak has both of her sons' cord blood stored with the Cord Blood Bank of Canada. 

Health Canada has since provided the address for the new location to some clients. CBC Toronto visited the new location at 1450 O'Connor Dr. on Friday, and the landlord confirmed the Cord Blood Bank of Canada moved into the building at the beginning of October.

No one answered the door at the unit on Friday. 

Can parents transfer their samples?

While Bitsakakis-Pack, Sniezek, Cieslak and others await their lab reports, there is still confusion over whether they'll be able to transfer their samples at all.

All the parents CBC Toronto interviewed want to transfer their samples to another facility.

Through the Cord Blood Bank of Canada's lawyer, CBC Toronto asked Ellison whether she would release clients' cord blood samples to them if requested. Her initial response was "neither the client services agreement nor Health Canada permit the transfer of samples." 

Health Canada issued a public information update on the Cord Blood Bank of Canada nearly two weeks ago. The update says the health agency tells clients to "be aware that, upon termination of your agreement with the Cord Blood Bank of Canada, the cord blood may only be disposed of or used for research purposes and may not be used by an individual, including the donor, at a later time."

But after seeking further clarification from Health Canada, the agency told CBC Toronto that line in the update is only referencing the company's agreement. Health Canada says it doesn't have "any regulatory requirements precluding the client from regaining possession of their cord blood."

No clear answers

CBC Toronto has also reviewed parents' client service agreements. None of the contracts seem to prohibit the transfer of samples. In fact, most of them include a provision for transferring the cord blood samples upon written request.

When pressed further about requests to move samples, Ellison's lawyer told CBC Toronto "the CBBC will consider the request in the context of the specific client services agreement entered into by the client and any risk to the sample caused by the proposed transfer."

Cieslak said, "If they moved my samples between labs in the last six months, I'm not quite sure I'd buy the argument it can't be moved to another lab with another umbrella agreement."

Still paying for void service

For Cieslak, the decision to store her sons' cord blood samples went beyond insurance for her children. Both of her parents died from cancer before she was 27. So Cieslak decided to store extra samples with the Cord Blood Bank of Canada in case they might be able to help other family members if they got sick as well. 

But since the Cord Blood Bank of Canada failed its Health Canada inspection in 2015, helping her family isn't an option. The company is no longer allowed to store cord blood for anyone other than the donor to which it belongs.

Cieslak says she was never informed of the change by Ellison.

"I'm still paying an additional fee for a service she can't provide me," said Cieslak who has been paying an extra $50 in her annual storage fees each year since her sons were born in 2012 and 2015.

The extra sample is specifically for use by other family members.

The service was part of the reason she recommended the Cord Blood Bank of Canada to her sister-in-law, Kimberley Wood. 

It just feels like they're hiding from something and what are they hiding from? What are they hiding?- Kimberley Wood, Cord Blood Bank of Canada client

Wood has been paying for the extra service as well, and has been making her own inquiries from her home in Dartmouth, N.S.

"Getting anyone on the phone there is near impossible," Wood told CBC Toronto. "It just feels like they're hiding from something and what are they hiding from? What are they hiding?"

In a written response, Ellison said the Cord Blood Bank of Canada "has been working diligently to respond to all recent inquiries, including from Health Canada and requests from clients."

Nicole Brockbank can be reached at 416-205-6911 or at nicole.brockbank@cbc.ca.