Italian vascular surgeon Dr. Paolo Zamboni believes there is a link between MS and what he has termed chronic cerebrospinal venous insufficiency (CCVSI) whereby the narrowing and blockage of neck veins results in restricted blood flow in the brain. His “liberation” procedure uses balloon angioplasty to open obstructed veins in the neck. Many MS patients have experienced improvements following the procedure.

There are only a few private facilities in Canada where patients can access testing for CCVSI including False Creek Healthcare Centre in Vancouver, British Columbia and Barrie Vascular Imaging in Barrie, Ontario. A recent news article reports that surgeons in Canada performed the “liberation” procedure on a handful of patients before its prohibition.

The medical community remains divided on the treatment with many doctors cautioning patients to wait until more research is done. Meanwhile, the race for research dollars is now on with hospital foundations in Saskatchewan and British Columbia each claiming that their province has the highest rate of MS in Canada. However, many patients are choosing to leave the country to seek treatment rather than waiting for our publicly-funded system in which bureaucrats decide the tests and treatments to be made available under Canadian medicare. Those hoping to undergo the procedure south of the border will need to travel much farther now that hospital legal teams are banning doctors from performing it in the United States.

One can only imagine the immense pressures now facing Dr. Zamboni who has effectively stepped outside the box and embraced one of the most powerful tools available today for advancing his medical research and treatment – patient engagement. Thanks to the Internet, patients are becoming informed and sharing their experiences. The MS patient-led rallies are a sign of just how effective the Internet can be in helping to organize and unite the patient voice.  

The “patient empowerment” tsunami that patients have been waiting for and governments have been dreading seems to have hit Canada on May 5th and it may be exactly what is needed for Canadians seeking “liberation”.

Isaac and Rebecka May have obtained a court injunction temporarily stopping the Alberta government from pulling the plug on medical care for their infant son. The Mays received a letter on January 13, 2010, indicating that the treating physicians at the Stollery Children’s Hospital in Edmonton would be discontinuing life support to their baby boy Isaiah James May on January 20, 2010.

Baby Isaiah experienced severe oxygen deprivation and brain damage following a difficult 40-hour labour and delivery at Rocky Mountain House Hospital in October 2009. He was airlifted to the Stollery Children’s Hospital in Edmonton and placed on a ventilator. The May family believes their son is improving and asked the court for a 90-day extension to his care. They originally received a one week reprieve but on January 27, 2010, Madame Justice Michelle Crighton provided another time extension giving the May family until February 19, 2010 to obtain an assessment by an independent medical expert. 

The Bigelow family from British Columbia is facing a similar situation. Their 33-year-old son Christopher, a medical graduate turned patient, suffered a severe brain injury in a car accident in November 2007. Doctors considered his condition “hopeless” and both the Vancouver Coastal and Fraser Health Authorities denied him access to rehabilitative programs. In March 2009 Christopher’s father Kevin Bigelow moved him from Surrey Memorial Hospital to the Halvar Jonson Centre for Brain Injury in Alberta.

Less than a year later, the Ministry of Health Services in British Columbia informed the Bigelow family that funding for Christopher’s care would be terminated effective January 15, 2010. The government made this decision despite the written recommendations from doctors in British Columbia and Alberta supporting the continuation of treatment at the Alberta facility. After the story gained public attention, the Ministry decided to continue to fund Christopher’s out-of-province treatment while they assemble an appropriate rehabilitative program in British Columbia at which time he must return home for care.

Both the May and Bigelow families are now embroiled in highly politicized fights for access to medical care funded by our single-payer, government-run health care system. Ultimately, it is a fight over funds in a system that goes so far as to legally prohibit its citizens from paying for the medically necessary services they require. This loss of freedom in personal health care decisions means that it is Canadian patients and their families who continue to bear the greatest personal cost for our single-payer health care system.

There are 34 million potential reasons why it’s time to pull the plug on single-payer health care. How many more cases do you need to hear about before making your decision?

In 2005, Rhonda Nixon entered the hospital for a diagnostic procedure that, if all went well, would have her back on her feet with little inconvenience. When things did not go well, Rhonda found herself in the middle of a medical misadventure with little information about what had caused the complications. Following life-threatening adverse events and a year of misinformation from her health care providers, Rhonda felt she had no choice but to search for her own answers, information and resources.

It has been a difficult path of discovery and healing, one that Nixon would like to help other people avoid if possible. After her recovery she realized “There had to be a better way to work with and communicate with health care professionals before, during and after a stay in the hospital.” Her personal experiences in the health care system have led to a deep interest in the issues of patient safety, disclosure of adverse events and errors in health care.

Nixon decided to provide others with information that would help them avoid some of the same situations that lead to her medical ordeal. In November 2009, she organized “The Empowered Patient Conference: Including the Patient in Patient Safety” in Nanaimo, British Columbia to highlight Canadian Patient Safety Week. The one-day conference focused on creating a greater awareness of patient safety issues and providing participants with the information and knowledge needed to make them better advocates. With minimal pre-conference media attention, 175 people attended the event to listen and learn from a variety of speakers including two special keynote speakers from the United States. “The systems may be different but the issues surrounding patient safety are the same,” says Nixon who first contacted Helen Haskell, Founder and President of Mothers Against Medical Error and Dr. Julia Hallisy, Founder and Author of The Empowered Patient. The two women, who co-founded The Empowered Patient Coalition work towards improving patient safety by providing people with information and resources for improving their medical experiences.

Conference participants found the event provided them with valuable information and indicated their desire for Nixon to hold similar events in the future. “(It) Gave hope for change and better health options. A good rounded representation of medical and non-medical speakers,” said one of the attendees. For Nixon, the conference shows that patients and health care providers need to work together toward positive outcomes. The Empowered Patient Conference has laid the groundwork for a new website and future workshops. Watch for upcoming articles on empowered patient Rhonda Nixon.

Each day there are stories in the news about the problems with our public health care system. Patients are finally voicing their concerns and people are realizing that although no health care system is perfect ours can be better.

The popular notion that our health care is “free” seems to serve as some perverse justification for waiting lists, lower standards of care, nonsensical policies and a lack of transparency and accountability for costs and performance.

Health care is not free. Our aging population, a decreasing workforce and increasing rates of health care spending means that our current taxpayer funded health care system is not sustainable. Sadly, it is failing both patients and providers. Change is necessary.

Perhaps one of the greatest tools for bringing about change is the Internet with its ability to provide instant information and communication between people across geographical boundaries. Canadians are sharing information and becoming more knowledgeable about our health care system and what impact it has on their personal health journey.

Each province and territory is responsible for administering its own publicly funded health care insurance plan and delivering its own health care services. This leads to differences in coverage and services across Canada and highlights the need for local involvement in bringing specific changes to a region.

The patient voice is organizing as groups aiming to make valuable contributions for improving our health care system are forming across the country. Watch for upcoming articles on patient engagement to find out what people are doing in your area and how you can get involved.

The patient voice is becoming louder. It is requesting data and information, sharing experiences, contributing to health policy and evoking change.

I hear the patient voice.