Saying she was frustrated because patients weren’t being adequately diagnosed or treated for Lyme disease, Liz Zubek quit British Columbia’s new Complex Chronic Disease Program (CCDP) in June. Now, Dr. Zubek has teamed up with Lyme disease patients in a crowdfunding project to pay a freedom of information (FOI) fee for the release of medical documents related to the program’s management.
Saying she was frustrated because patients weren't being adequately diagnosed or treated for Lyme disease, Liz Zubek quit British Columbia's new Complex Chronic Disease Program (CCDP) in June.
Now, Dr. Zubek has teamed up with Lyme disease patients in a crowdfunding project to pay a freedom of information (FOI) fee for the release of medical documents related to the program's management.
Gwen Barlee, a Lyme disease patient and policy director of Wilderness Committee, launched the project Monday morning and by noon had hit the target, raising half the total $2,160 fee. Dr. Zubek had promised to match dollar-for-dollar any donations made, so she will contribute the balance.
"I worked at the Complex Chronic Disease Program. It was a $1.2-million program, and yet we were not able to do anything that was in our mandate to do," Dr. Zubek said about why she was supporting Ms. Barlee's project.
"We were supposed to be looking at better testing for Lyme disease patients, yet there was no facility to improve the testing or to order the testing that we needed from elsewhere. … we were not able to treat the Lyme disease patients. There was no IV setup there. And we were completely at a stalemate to actually be able to meet the mandate of the program," said Dr. Zubek, who helped start the CCDP in 2013.
With a waiting list of 1,500 patients, Dr. Zubek said she and other doctors faced a great demand for services, "but met with resistance" from above when it came to actually treating patients.
She hopes the documents sought by Ms. Barlee will answer these questions: "Who were the people behind the scenes that blocked us from ordering tests or treatments? Why were we not able to do this? Why did we meet with such resistance?"
In June, Health Minister Terry Lake acknowledged that the new program wasn't meeting expectations. "They need to fix it," he said.
Ms. Barlee, who has suffered from Lyme disease for years, said she filed the FOI request after three doctors quit the CCDP earlier this year, raising questions about the program's effectiveness. She was shocked when the Provincial Health Services Authority told her it would not waive a fee for releasing records concerning the treatment and management of Lyme disease and demanded more than $2,000.
"I have concluded that some of the records you have requested do relate to a matter of public interest … however, we do not conclude the disclosure of these further records will contribute positively to a matter of public interest," Sandra MacKay, chief counsel for the Provincial Health Services Authority (PHSA), told Ms. Barlee in an Aug. 5 letter.
The CCDP was created after earlier FOI requests by Ms. Barlee unearthed government documents which confirmed Lyme disease patients were not being adequately treated in B.C. In her letter, Ms. MacKay acknowledged Ms. Barlee's past role, saying "the CCDP was conceived as a result" of her efforts, and "good work was done [by her then] using freedom of information requests."
But Ms. MacKay said the clinic is now serving the public and Ms. Barlee has not shown how her latest request "might contribute positively" to the goal of helping Lyme disease patients.
In an e-mail, Ms. MacKay told The Globe and Mail the PHSA has spent 15 hours on Ms. Barlee's request so far, but it would take an additional 75 hours to locate and release the remaining records. "PHSA has not denied the applicant's request; we have merely exercised our right to ask for moderate compensation for time spent," she wrote.
"They are making up excuses not to release important health documents that relate to a growing public health concern … it's embarrassing," Ms. Barlee said. "We have a right to know why we can't get appropriate treatment for tick-borne infection in B.C. and these documents would help shed light on that. It's a shameful, shameful thing that Lyme disease patients have to resort to crowdfunding to get documents that are clearly in the public [interest]."
Mark Hume