We don’t often think of how easy it is for our whole life to change in one instant. When we do think of it, it’s often too little too late. Yet it is much more common than you might think – the human body is so vulnerable and can easily be damaged in an accident or develop a rare condition that our healthcare system does not cover.
It’s too easy for people to fall between the system’s cracks and when they do, what happens to them?
Obviously, they experience financial vulnerability, especially in a country where there is no federal or provincial policy to fund uncommon ailments, also known as “orphan medicine”. People who have private insurance coverage may be ok, at least as long as they have a job if you become disabled. Drug treatments for uncommon ailments can cost up to $1-million dollars a year, leaving families and individual in precarious places. Canada is one of the few developed countries without an orphan-drug policy plan. While it is true that the drug costs can be quite high, the number of Canadians with rare diseases is relatively low.
But people with rare ailments are not the only ones who experience hardship. People with severe mobility restrictions also experience extraordinary challenges in their day-to-day lives. All it takes is a fall to change your life and it happens all the time. Every year, 4,300 Canadians incur spinal chord injuries (SCI) and there are 86, 000 Canadians living with SCI. These injuries often lead to paralysis and render people either paraplegic or quadriplegic. If you’re injured in a car accident you may be covered for drugs and additional care but what about those who are injured in other way s or have no private coverage?
Costs associated with SCI are staggering – financial care requirements over a lifetime can vary from $1.6 to 3 million dollars. Living with SCI is made more difficult by the fact that we do not yet life in a fully accessible world. It will take decades for universally accessible design to become a reality and the costs of retrofitting a home alone are enough to bankrupt some families.
People who fall between the cracks of the healthcare system are often forced to reply rely on or private charity and on organizations like the Canadian Organization for Rare Disorders and the Rick Hansen Institute, which works to provide research and better care outcomes for people with SCI as well as improving accessibility for people with disabilities.
A useful resource, developed but he by the Rick Hansen Institute is planatat, which allows you to discover accessible services. The service is free and can be used from your desktop or mobile device.
In this issue, Dr. Angela Mailis-Gagnon, our resident pain expert, writes a heart-wrenching story about a patient who experienced this change in a swift and devastating way.
I met Tracy a week ago, when her doctors referred her to me.
Tracy at 41 had it all, she had faced obstacles before but she had overcome them. She was a very fit and athletic woman involved in all kinds of sports, as well as, a very successful professional, president of a financial company and mother of 3.
On Sunday September 4, 2011, while cycling alone near Blue Mountain in Collingwood Ontario, training for The Centurion Canada road race, Tracy had an accident. She fell from her bicycle and suffered a catastrophic and life changing injury: a broken neck. The fall left her with completely paralyzed from the neck down. She was flown by air-ambulance to Sunnybrook Hospital in Toronto, and then sent to The Lyndhurst Centre for rehabilitation. Tracy’s story made headlines at Globe and Mail and other media as it brought to the frontline the plea of Canadians who suffer catastrophic spinal cord injuries.
Tracy was sent to see me because she is suffering from severe neuropathic pain in her arms, neck and legs, a very serious and debilitating pain that is difficult to manage and affects half or more of those who suffer traumatic spinal cord injuries. On the top of this, her motionless arms and legs go into severe spasms on their own, which adds to Tracy’s serious pain.
Her pain was not the only thing I needed to ask questions about. I was equally interested in the details of Tracey’s personal life and how exactly was she coping with the catastrophic injury that had robbed her of her ability to even care for herself, besides the loss of her role as a mother and a money earner.
Here is what I learned… Tracy had 3 kids 7, 12 and 13, and unfortunately the youngest and the oldest suffer from autism, a disorder of the nervous system that makes it very hard for the sufferers to interact with the people around them. In her case, she needed a live-in nanny to be able to care for the kids and work. Things did not go well in her marriage, as she separated in 2006 and divorced in 2008.
Tracy had to quit her job to put her life together and look after the kids during the transition. Thanks to her professional skills she had made good investments that provided income and security while she was looking for another job with less demands on her time. When the disaster hit, one of her sisters moved from the States to help take care of kids for 6 months while Tracy was hospitalized.
Afterwards, her mother had to leave her job and move from Ottawa to Toronto to help with the kids. Another sister has been helping to set up a trust fund for the kids and help fundraise to pay for renovations to the house and the purchase of equipment (like a lift) and a modified van able to accommodate a wheelchair. Unfortunately, Tracy has no income whatsoever and there is no insurance coverage for her condition (if she were in a car accident, she would have been deemed as suffering from a catastrophic injury and would have financial support for life, but there was no insurance covering bicycle accidents). Currently she is borrowing from home equity to pay for medications and attendant care, which she requires 24 hrs a day.
As I was hearing all this from Tracy who looked at me from electric wheelchair, able to move only her head, I was stunned by her gentle and calm demeanor. It was not until I asked, “how do you cope with all this?” that her voice broke. “It’s very difficult” she said. “What about medications, who pays for them?” I asked again. “No one. Now that I am about to be discharged from the rehabilitation hospital, it will be very hard for me to afford them”.
Just remember, injuries like the one Tracy suffered can happen to any one of us, our loved ones or people with whom we work. It only takes split seconds for the spinal cord to suffer a catastrophic injury. I can not remember how many such patients I have seen in my professional life with life changing spinal cord injuries after a car accident, a dive in shallow waters, a fall from a ladder, a slip in the bathtub or even a simple fall from a couple of stairs.
To learn more about spinal chord injuries and about Tracy, please visit the Rick Hansen Institute Foundation website.
We need to have a National conversation about what to do with cases like these – should people be forced to rely on charity? In a discussion that experts often debate on the basis of costs like the estimated $82-million Canadians spend annually on orphan drugs, it might be helpful for Canadians to also put a face to the issue. It also might be a question of how we, as a nation, protect our most vulnerable citizens.