Still waiting for refunds from Winnipeg stem cell researcher, patients say
Karen Pauls | CBC News | Posted: March 13, 2015 5:04 PM | Last Updated: March 13, 2015
'We've paid the money out and it's disappeared,' distraught mother claims
Multiple sclerosis and ALS patients around the world are wondering if they'll ever get their deposits back from a controversial stem cell researcher in Winnipeg.
They also want to know when they'll hear more about RCMP and Health Canada investigations into Doug Broeska and his company, Regenetek Research.
"We've paid the money out and it's disappeared. I'm very angry about it," said Australian Kate Millar, who is waiting for the $20,000 deposit she paid for ALS treatment for her daughter, Jaime Wild.
"That's nearly half my income for the year. I work really hard for half a year to come up with that money and I've handed it over to him and now I've got nothing," she said.
"I've got no one to turn to, I don't know how to get this money back, I don't know how to track him down."
We've paid the money out and it's disappeared. - Kate Millar, mother of ALS patient
Mark Taplin is another Australian who paid Broeska's Clinicard company $20,000 US for stem cell treatment in Pune, India. He hoped it would improve his MS symptoms.
"It's extremely frustrating because we're spread around the world. It's not like I'm around the corner where I can get a debt collector or legal action. We're totally powerless," he said in a Skype interview.
Neither Taplin nor Wild ever received the combination stem cell treatment, which involves injecting the patient's own stem cells into their neck.
They cancelled their travel plans several months ago when other patients began to question Broeska's qualifications, his research methodology, and the treatment in India.
- MS patients question credentials of Winnipeg man involved in stem cell therapy
- Winnipeg firm Regenetek issues statement explaining role in MS study
- MS patient 'shocked' by claims about company in stem cell experiment
In a LinkedIn profile, Broeska claimed to have a PhD from the University of Manitoba. The university says that is not true.
Broeska has produced a PhD certificate from Brightland University as proof of his qualifications. That university is unaccredited in the United States and United Kingdom, and the University of Manitoba confirms it would not recognize a degree obtained from there.
The University of Winnipeg's ethics board has also rejected a proposal to do follow-up rehabilitation with patients recruited through Regenetek.
"I can't afford to get more treatment anywhere else unless I get my money back," Taplin said.
"The Indian connection have got no record of me being registered even though I was due to be over there for surgery on the 15th of April. They have no record of me paying any money. They have no record, I don't exist."
The head of the Indian research group Genesis Ltd., Surjo Banerjee, confirms that in an email to CBC News.
Taplin wants to know whether the bank accounts for Broeska and his companies have been frozen, and whether his passport has revoked, while investigators sift through the complaints.
As a result of complaints from Millar, Taplin and other patients, the RCMP in Manitoba confirms it is investigating "fraud involving Regenetek" but hasn't provided an update.
Health Canada is also looking into complaints about non-compliance with the Food and Drugs Act.
Broeska has said he welcomes the investigations, saying he looks forward to the truth coming out and vindicating him.
But Banerjee, Broeska's former researcher partner in India, claimed he is also owed more than $35,000 US for patients recruited through Regenetek. They were treated in January and February, but some of their payments have never been forwarded from Canada, he said.
"We have heard nothing and do not know what Regenetek's up to these days," Banerjee wrote in an email response.
The clinical study into stem cell combination therapy study with Regenetek has been terminated and there are no more patients coming from them, he said, adding patients who want to be included in a new Genesis study can apply online.
Costs for the treatment and followup have been cut to $25,000 US, Banerjee said. MS patients recruited through Regenetek were paying up to $35,000 US. ALS patients were charged up to $45,000 US.
Broeska responds
In a statement sent to CBC News on Friday, Broeska said Genesis actually owes him money, and patients should talk to Genesis about repaying their deposits. Read his full statement below.
In previous statements, Regenetek has disputed Banerjee's role in the research protocol.
- Broeska speaks out, defends against 'inaccurate media reporting'
- Mother wants refund for experimental stem cell treatment
- RCMP, Health Canada investigate Winnipeg stem cell researcher
Broeska has also questioned how the head of the ethics board that replaced him is now the new principal investigator on the study.
"I believe Dr. (Bill) Brashier wrote the letter removing me as Principal Investigator, then he immediately resigned as head of the IECP, joined Genesis the same day and was appointed Principal Investigator of the Regenetek study, in my place," Broeska wrote in a statement.
"It is not possible for this timing to be anything but a deliberate conspiracy to seize control of the study both operationally and financially."
'Just buying time'
Meanwhile, Millar said her daughter's condition is worsening, so they recently held a Cinderella fundraising ball to pay for stem cell treatment in Israel. She leaves Mar. 22.
"My daughter is dying. And if I don't get treatment for her, she won't be here for Christmas. That's how desperate we are now," Millar said emotionally.
"I'm not hoping for a cure. I'm just buying time."
Broeska statement
The following statement was issued on Friday by a public relations firm representing Doug Broeska:
Regenetek Research has already forwarded considerable financial evidence to the CBC demonstrating a substantial overpayment by Regenetek for overall participant enrollment, thereby placing Genesis Ltd. in a significant arrears position. Genesis Ltd. is therefore obliged to have accepted and treated all participants enrolled by Regenetek.
More importantly, based on a payment schedule established by Dr. Pramod Dhembare, owner of Genesis Ltd. in September of 2014 (see the enclosed email for verification), the full enrollment fee was to be divided as follows:
$ 30,000 of the total $ 35,000 enrollment fee (or 86%) to flow to Genesis Ltd. with $ 9,000 going into the pocket of the two Genesis principals, Dr. Pramod Dhembare and Surjo Banerjee, and a $ 5,000 "commission" to go to Dr. Bill Brashier, who at the time was the Chairman of the Independent Ethics Committee Pune (IECP) in India.
For the head of the overseeing institutional review board to be receiving patient enrollment "commissions" is at the very least unethical and potentially illegal.
Regenetek served merely as a facilitator in the process of forwarding study participants to Genesis Ltd. for treatment and then performed ad hoc research after they had been treated. For that, Regenetek was to receive a $ 5,000 (or 14%) share of the total enrollment fee.
As such, it is Genesis Ltd. (the recipient of 86% of the patient enrollment fee) who should be scrutinized in terms of why the organization has or has not treated participants previously enrolled and paid for by Regenetek Research.