Why some Canadian families can’t entrance a potentially life-saving branch cells they’ve stored

Parents from opposite a nation are struggling to get reason of their children’s potentially life-saving branch cells amid concerns about a Toronto association they’ve been profitable to store a samples for years.

And for during slightest one of those families, a stakes are already high.

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

Bitsakakis-Pack has been generally endangered about her children’s cord blood samples after her younger daughter was diagnosed with a singular genetic syndrome as an infant. (CBC)

“There doesn’t seem to be a lot of information with this syndrome,” Bitsakakis-Pack told CBC Toronto. “So for her, if something does uncover adult in a nearby destiny or late future, we would wish that we would have her cord blood to use if we had to entrance it.”

In serve to her daughter’s condition, Bitsakakis-Pack’s possess health issues have combined to her concerns about a samples. A year ago, she was diagnosed with breast cancer and usually finished diagnosis in June.

CBC Toronto first reported on a Cord Blood Bank of Canada and CEO Bernadette Ellison this summer, when dual mothers from Ontario and Alberta lifted concerns about a association after learning it had unsuccessful a Health Canada review in 2015.

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

As a result, a Greater Toronto Area military use non-stop an review into a Cord Blood Bank of Canada. Police visited one of a company’s Toronto locations and found a Cord Blood Bank of Canada did have a lab trickery there. Assured that a lab still existed, investigators sealed a box in September.

Parents watchful on lab reports

That wasn’t adequate for Bitsakakis-Pack and other relatives interviewed by CBC Toronto. All of them have requested a lab news for their samples from Cord Blood Bank of Canada, as a initial step towards relocating a samples to another private cord blood bank.

Teresa Sniezek, a customer who raised concerns about a Cord Blood Bank of Canada in an earlier CBC Toronto story, was a initial of a relatives to ask her lab report, in July. 

Teresa Sniezek has been watchful for her daughters’ lab reports given July. (Teresa Sniezek)

The Grande Prairie, Alta., mom says a association concluded to send a lab reports for her daughters, though 4 months later, she still hasn’t perceived them. 

None of a other relatives has either.

“I’ve been job any day. How do they know we don’t need my sample?” Bitsakakis-Pack said.

‘I’ve been job any day. How do they know we don’t need my sample?’

- Natasha Bitsakakis-Pack, Cord Blood Bank of Canada client

“They have a certain custom in their agreement about how to go about retrieving your representation if we need it. Nobody’s job me back. No one is responding a phone. It’s unequivocally unnerving.” 

Ellison, refused an talk with CBC Toronto. But Ellison’s lawyer provided answers to created questions on her behalf.

The Cord Blood Bank of Canada says it’s usually compulsory to yield a lab news to clients if they’re about to use a sample. But when asked either Ellison would send clients their requested lab reports, CBC Toronto was told a association was “aiming to send out cord blood confirmations to all clients with accounts in good station by a finish of November.”

Lab moves twice in 6 months

CBC Toronto visited a Cord Blood Bank of Canada’s plcae during 688 Coxwell Ave. in Toronto this summer. The association changed to that plcae in May from another Toronto residence where clients had sent their samples.

At a time, a association would not endorse it was a plcae of its lab facility. In September, a military review reliable there was a lab during a Coxwell location. 

CBC Toronto visited a Cord Blood Bank of Canada’s plcae during 688 Coxwell Ave. this summer. The association has now left this location. (CBC)

But Cord Blood Bank of Canada changed again during a finish of September, and while a association confirms it has moved, Ellison won’t tell clients a new address.

“I did ask her true out because a lab had changed twice. She didn’t tell me why,” pronounced customer Kathleen Cieslak, who left messages for a association any day for 3 weeks before removing a call back.

“I asked where a new plcae was. we usually unequivocally during this indicate wish to know my samples are anywhere, not sitting in a dumpster.”

The Mississauga, Ont., lady says Ellison told her she couldn’t divulge a plcae of a lab for worker reserve reasons. Cieslak has both of her sons’ cord blood stored with a Cord Blood Bank of Canada. 

CBC Toronto visited a Cord Blood Bank of Canada’s new plcae during 1450 O’Connor Dr. No one answered a doorway during a company’s unit. (Lisa Xing/CBC)

Health Canada has given supposing a residence for a new plcae to some clients. CBC Toronto visited a new plcae during 1450 O’Connor Dr. on Friday, and a landlord reliable a Cord Blood Bank of Canada changed into a building during a commencement of October.

No one answered a doorway during a section on Friday. 

Have we gifted any issues with a Cord Blood Bank of Canada? Get in hold by promulgation an email to nicole.brockbank@cbc.ca.

Can relatives send their samples?

While Bitsakakis-Pack, Sniezek, Cieslak and others wait their lab reports, there is still difficulty over whether they’ll be means to send their samples during all.

All a relatives CBC Toronto interviewed wish to send their samples to another facility.

Through a Cord Blood Bank of Canada’s lawyer, CBC Toronto asked Ellison either she would recover clients’ cord blood samples to them if requested. Her initial response was “neither a customer services agreement nor Health Canada assent a send of samples.” 

CBC Toronto reviewed customer use agreements from a relatives enclosed in this story. It doesn’t seem any of a contracts demarcate a send of samples. (Nicole Brockbank/CBC)

Health Canada released a public information refurbish on a Cord Blood Bank of Canada scarcely dual weeks ago. The refurbish says a health group tells clients to “be wakeful that, on stop of your agreement with a Cord Blood Bank of Canada, a cord blood competence usually be likely of or used for investigate functions and competence not be used by an individual, including a donor, during a after time.”

But after seeking serve construction from Health Canada, a group told CBC Toronto that line in a refurbish is usually referencing a company’s agreement. Health Canada says it doesn’t have “any regulatory mandate precluding a customer from convalescent possession of their cord blood.”

No transparent answers

CBC Toronto has also reviewed parents’ customer use agreements. None of a contracts seem to demarcate a send of samples. In fact, many of them embody a sustenance for transferring a cord blood samples on created request.

When pulpy serve about requests to pierce samples, Ellison’s counsel told CBC Toronto “the CBBC will cruise a ask in a context of a specific customer services agreement entered into by a customer and any risk to a representation caused by a due transfer.”

Cieslak said, “If they changed my samples between labs in a final six months, I’m not utterly certain I’d buy a evidence it can’t be changed to another lab with another powerful agreement.”

Still profitable for blank service

For Cieslak, a preference to store her sons’ cord blood samples went over word for her children. Both of her relatives died from cancer before she was 27. So Cieslak motionless to store additional samples with a Cord Blood Bank of Canada in box they competence be means to assistance other family members if they got ill as well. 

Kathleen Cieslak phoned a Cord Blood Bank of Canada any day for 3 weeks before removing a call back. The association refused to tell her a new location. (CBC)

But given a Cord Blood Bank of Canada unsuccessful a Health Canada review in 2015, assisting her family isn’t an option. The association is no longer authorised to store cord blood for anyone other than a donor to that it belongs.

Cieslak says she was never sensitive of a change by Ellison.

“I’m still profitable an additional price for a use she can’t yield me,” pronounced Cieslak who has been profitable an additional $50 in her annual storage fees any year given her sons were innate in 2012 and 2015.

The additional representation is privately for use by other family members.

The use was partial of a reason she endorsed a Cord Blood Bank of Canada to her sister-in-law, Kimberley Wood. 

‘It usually feels like they’re stealing from something and what are they stealing from? What are they hiding?’

– Kimberley Wood, Cord Blood Bank of Canada client

Wood has been profitable for a additional use as well, and has been creation her possess inquiries from her home in Dartmouth, N.S.

“Getting anyone on a phone there is nearby impossible,” Wood told CBC Toronto. “It usually feels like they’re stealing from something and what are they stealing from? What are they hiding?”

In a created response, Ellison said the Cord Blood Bank of Canada “has been operative diligently to respond to all new inquiries, including from Health Canada and requests from clients.”

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

Article source: http://www.cbc.ca/news/canada/toronto/parents-fear-kids-potentially-life-saving-stem-cells-stuck-in-limbo-at-toronto-company-1.4376208?cmp=rss