July 20, 2015
Lyme disease patients denied treatment based on faulty tests
Vancouver, BC ~ Confidential documents, obtained through a Freedom of Information (FOI) request, show doctors and other senior government officials in British Columbia raising serious doubts about accuracy of Lyme disease blood tests.
- “Firstly, are we talking about Lyme testing? If so, patients have access to the standard testing available in BC; there continue to be limitations because the tests (Elisa) for Lyme disease are insufficient; newer tests are not available in BC.” Email from senior vice-president Patient Care Services at BC Women’s Hospital and Health Centre.
- “It is very difficult to diagnose patients with Lyme disease, particularly when patients test negative for Lyme disease using the available tests for Lyme diseases which currently have a sensitivity rate of less than 50%.” Draft Key Messages document from senior staff with BC Government Communications and Public Engagement (GCPE).
- “ . . . but the issue with Lyme spirochete is that they are not found in the blood like other bacterial or viral agents. Borrelia burgdorferi is very transient in blood and they like to settle in tissues more.” Muhammad Morshed, clinical microbiologist at the BC Centre for Disease Control discussing the limitations of blood tests in diagnosing Lyme disease.
“It is really concerning that the public and patients are falsely reassured that Lyme disease testing in BC is just fine, but behind the scenes the BC government acknowledges there are serious limitations with the accuracy of the tests,” said Gwen Barlee, Lyme disease patient and advocate. “It is tragic that Lyme disease patients in BC are often denied treatment based on negative tests when it is known the tests are inaccurate.”
Lyme disease has been a contentious issue in BC. In 2011 an internal government report obtained through FOI criticized the province for poor management of the disease. Within 24 hours of the report being made public the government announced the creation of a clinic to treat Lyme disease patients. Since its opening the clinic has been beset by controversy with multiple doctors leaving citing interference with the treatment of Lyme disease patients.
“The limited sensitivity of current tests mean they don’t detect Lyme disease reliably,” said CanLyme board member David Cubberley. “Government needs to inform our doctors that Lyme disease is diagnosed from symptoms and not to depend on this poorly performing test.”
The BC government originally charged $2,160 for the release of the records saying they “did not contribute positively” to the public interest. In response Lyme disease patients launched a crowd-funding campaign to raise the money for the FOI – reaching their target within four hours. After a complaint to the Office of the Information and Privacy Commissioner the government waived the entire fee and offered an apology.
For more information please contact:
Gwen Barlee, Lyme disease advocate, 604-202-0322
David Cubberley, board member Canadian Lyme Disease Foundation, 250-818-1129