The saga continues

Alan Cassels, November 2013

Update on the Ministry of Health scandal

Over the next few months patients and caregivers in BC are being asked for their opinions on the three main drug treatments used to treat Alzheimer’s disease that are covered by BC Pharmacare. On its “Patient Voices” website, the Ministry of Health is requesting input on experience with donepezil (Aricept®), galantamine (Reminyl®) and rivastigamine (Exelon®). Those comments will form part of the deliberations as a government committee decides whether or how the drugs should be covered by the public purse.  

This comes at a curious time, given the fact that researchers at UVic and UBC who have been studying the drugs for the last five years in order to advise the ministry on continuing or stopping coverage, can’t do their jobs.  Last September, amid allegations of breaches of privacy and improper contracting, seven employees were fired and many researchers connected to ministry drug evaluations—including the ones on the Alzheimer’s drugs—had their data access terminated. One of the fired employees has since committed suicide.

Alzheimer’s drugs are controversial and BC was one of the last provinces to provide  coverage. Manufacturers claim the drugs help Alzheimer’s patients function better on their own, but a close reading of the clinical trials presents a different story. In 2005, UBC’s Therapeutics Initiative rigorously analyzed the best available research and found it couldn’t demonstrate any improvement in “outcomes of importance to patients and caregivers” (e.g. institutionalization or disability) and the drugs have “gastrointestinal, muscular, and other adverse effects and likely increase serious adverse events.” 

Facing intense industry and patient pressure for drug coverage (from groups like the pharma-supported Alzheimer’s Society of BC), the Gordon Campbell government brought in an innovative policy solution in 2007. He announced that the drugs would be covered as part of a three-year trial where additional data would be collected to see if the drugs had any benefit. Six years later the province doesn’t seem any closer to answering the question: Are the drugs worth covering or not? 

As the data taps are turned off and researchers left twiddling their thumbs, the one thing that hasn’t been interrupted is the flow of money to Alzheimer’s drug makers with tens of millions of BC tax dollars continuing to be spent on these drugs of unclear benefit.  

Neena Chappell at the Centre on Aging at UVic led the overall evaluation of the Alzheimer’s Drug Therapy Initiative (as it was known) and her group carried out hundreds of interviews with caregivers. Her team also needed to access the province’s drug utilization data to analyze the impact of the drug, yet this work has been suspended pending the outcome of the ministry investigation.

Chappell looked at the ministry’s questions requesting consumer feedback on the website and agreed with me that one thing seems perfectly clear: The wording discourages any comments other than ones that refer to benefits.

While patients’ voices are relevant, without the objective research by scientists like Neena Chappell and organizations like the Therapeutics Initiative to evaluate the safety of our drug supply, the Ministry of Health won’t be able to demonstrate that they are getting good value for the billion and a half dollars of public money that gets spent on prescription drugs every year in BC.

Alan Cassels