The legislatively mandated Conference to Develop a Federal Framework on Lyme Disease finally kicked off on Sunday with a public forum designed to allow Lyme disease sufferers to tell their stories. And tell their stories they did. Patient after patient testified about the profound failure of the healthcare system to help them during the time of their greatest need and of the widespread, systematic abuse they had suffered at the hands of doctors. They spoke of being verbally attacked, threatened, or outright fired by their own physicians and of being insulted when they dared to bring up Lyme disease.
Lyme sufferers didn't hold back. They talked about how they had been misdiagnosed with one or more of the myriad illnesses that Lyme disease mimics and of how they had been advised to leave Canada to seek treatment in the United States at their own expense. Some confessed to having been financially destroyed, having had to sell their houses and deplete their life savings in order to combat an illness they were told in no uncertain terms they couldn't possibly have contracted in this country.
Only that's exactly what they'd done.
Experts blown away
These stories are hard to hear. Several experts attending the conference admitted to being blown away by the depth and breadth of the suffering.
I'll confess to receiving the details of the testimony second hand, largely because I knew what the sufferers were going to say but mostly because I knew that if I had to hear them saying it, I would likely have put my head in my hands and stayed that way for hours. You see, I know these people. I've travelled the country talking to Lyme disease sufferers and I've heard their stories too many times to count.
I've also received hundreds of excruciating emails from Lyme patients in every province who were at their wits' end. They gave me not just their stories, but also coroner's reports, test results, and photographs that normally only a medical professional would see. They gave me those things because they had no one else to give them to and because I had been through what they were going through and they knew I would understand.
They told me of their anger and their humiliation at what had happened to them. And they told me of their fear. It's the fear that bothers me the most. I've heard from countless Lyme disease patients who made me swear to keep their identities a secret out of fear that they would lose their jobs or, if they were between jobs, that they would never be hired. They told me that they were afraid that if they spoke out publicly about how poorly doctors had treated them that they would find themselves without what little medical care they had left or that they would be reprimanded by health authorities.
I openly admit to being a proud Canadian. I understood from a young age that universal healthcare was the birthright of all Canadians. I never thought I would see the day when a clearly identifiable group of people would be routinely denied medical treatment on the basis of the one thing they all had in common: the disease they had been diagnosed with. As a nation, we are better than this.
We need to find a way to pick up the pieces of a very broken healthcare system. The patients who testified on Sunday did so in part out of a desperate need to get help for themselves. But they also did it to ensure that what had happened to them wouldn't happen to anyone else.
Lyme is a preventable disease, but it's only preventable if Canadians know when they are at risk and take precautions to keep themselves safe. Public health officials, to this point, have been doing a universally poor job of letting Canadians know when they are living in high risk areas for contracting Lyme disease. Most Canadians can't even tell you Lyme's major symptoms. And virtually no one in this country takes precautions to mitigate their risk of contracting the illness.
The number of Lyme disease cases in Canada is expected to skyrocket in the coming years. This week, Lyme disease sufferers and policymakers have gotten together in an effort to come up with a cohesive strategy that will serve as an important first step in getting existing patients the treatment they need and in figuring out how to prevent everyone else from contracting this terrible disease. Let's hope they succeed.