Crowdfunding Success for Freedom of Information Request at Controversial Chronic Lyme Disease Treatment Centre

by lmatthews on September 26, 2014

gwen barlee lyme disease clinic canada ccdp FOI request crowdfunding

Gwen Barlee, of the Wilderness Committee, successfully crowdfunded a project to obtain CCDP's medical records.

The Complex Chronic Disease Program (CCDP) centre established in Vancouver, British Columbia, will have no choice but to be transparent about its activities now that a crowdfunding project has secured the money needed to pay for a Freedom of Information request into the centre’s failure to address patients’ needs. The crowdfunding project took just a few hours to meet its goal of raising half of the required $2,160 fee to access files related to the centre’s operations and management, with a disenchanted physician, Doctor Liz Zubek, matching the amount raised so as to contribute the balance.


Dr. Zubek quit the clinic in June after becoming irrevocably frustrated that the CCDP wasn’t meeting its promises to patients. The $1.2 million program failed to diagnose or treat patients with Lyme disease and the waiting list had grown to over 1,500 people looking for answers for illnesses that continued to perplex numerous health care practitioners.

Lyme Disease Advocate Turns to Crowdfunding

The crowdfunding project was spearheaded by Gwen Barlee, a Lyme disease patient and policy director of Wilderness Committee. Barlee has suffered with Lyme disease for many years and filed an FOI request following the resignations of three of the CCDP’s physicians in early 2014. That these doctors quit their work on a project about which they appeared passionate seemed like a clear red flag to Barlee that something was amiss in the way the CCDP was being run.

Zubek has spoken out about the problems at the CCDP, stating that the centre didn’t even have facilities for intravenous treatments, not were there opportunities to really help improve testing or order testing for patients. The FOI request is intended to help provide answers to questions regarding the behind-the-scenes activities that prevented Dr. Zubek and colleagues from really helping patients with chronic diseases.


Lyme Disease FOI in Canada – In the Public Interest?

Typically, the fee for an FOI request is waived when the information requested is deemed to be in the public interest. However, Barlee was shocked to find out that the Provincial Health Services Authority wouldn’t waive the fee for releasing the records from the centre. Barlee was, herself, instrumental in the establishment of the CCDP after filing earlier FOI requests regarding the lack of adequate provision for patients with Lyme disease in BC.

Despite acknowledging the role Barlee played in using FOI requests to the benefit of Lyme disease patients, this time around the PHSA determined that the request warranted compensation for the employee time necessary to obtain the records from the centre (calculated at around 90 hours).

As the funding has now been secured and the FOI request is ready to be submitted, this story is likely to soon get ever more complex. Barlee, the disgruntled CCDP physicians, and other health care advocates and Lyme disease sufferers will (hopefully) be poring over the medical papers in the next few weeks or months and letting the public know exactly what went wrong at the BC Complex Chronic Disease Program.

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