Diagnosing high cholesterol in families saves lives: doctor
Potentially fatal condition affects an estimated 8,000 people in B. C., yet many physicians aren’t aware of it
Fifty- five- year- old Fred Hazen says learning about a genetic condition that stalks his family is probably the reason he’s alive today.
His younger brother is already gone — dead at 46 after years of declining health following his first heart attack in his 20s caused by super- high levels of cholesterol.
“Understanding the ( condition) to start with — and the treatments — I believe that has really extended my life,” Hazen explained in a recent telephone interview from his home in Kamloops. “My cholesterol is just about normal now.”
Hazen, a millwright who had bypass surgery at age 45, is one of about 900 British Columbians on a Vancouver- based registry of people who have high cholesterol levels caused by their genetic makeup rather than external forces such as a fatty diet. The condition called familial hypercholesterolemia, or FH, affects about one in 500 Canadians yet most don’t find out about it until after they’ve landed on an operating table for heart surgery.
“They do research on you and check the rest of the family out,” said Hazen. “If they can catch it at an early stage and control it, I think that’s where the registry is valuable, to prevent heart attacks. Every 10 years, ( researchers) come out with newer treatments and medications.”
Dr. Jiri Frohlich, director of healthy heart clinical trials at St. Paul’s Hospital in downtown Vancouver, launched the registry modelled on similar ones in the United Kingdom and the Netherlands last year.
It operates on the theory that once people know they have FH, many will take measures to prolong their lives by quitting smoking, improving their diets, exercising, losing weight and taking cholesterol- lowering medication.
“This should be suspected in families with a history of heart attacks,” explained Frohlich. “Very high cholesterol can be inherited and present from birth. Imagine that you started smoking right after your birth. It’s the same risk factor.
There are an estimated 8,000 people in B. C. and 83,000 people in Canada with FH, yet many family doctors aren’t aware of it, said Frohlich.
So far, 80 per cent of the former St. Paul’s heart patients known to have the condition have either signed or promised to sign consent forms and forward information about the registry to their relatives. More than 100 of those relatives have joined the registry.
It sounds like a fair start, but the participation rate in B. C. is significantly lower than the Netherlands, for instance, where 95 per cent of people with FH who are contacted agree to take part in a national registry.
“It’s pretty good, but to me it’s absolutely bewildering. If someone told me that my relatives have a 20 times greater chance of having a heart attack — half of my male relatives before the age of 50 and onethird of my female relatives before age 60 if not diagnosed — I’d make damn sure they are all diagnosed,” said Frohlich.
“Why do almost 20 per cent of people say no? It beats me.”
Research commissioned by Heart UK, a national charity focusing on high cholesterol, concluded in 2012 that the national health care system would save $ 3 million Cdn per year in hospital costs if only half of the people with FH were identified and treated with cholesterol- lowering drugs. ( Drug companies paid for the research, but the authors said they reached their own conclusions.)
Dr. Jacques Genest, scientific director of the Centre for Innovative Medicine at McGill University Health Centre in Montreal, is using the system developed at St. Paul’s to launch a similar registry in Quebec. He and Frohlich have also applied for funding from the Canadian Institutes of Health Research to expand it countrywide.
Genest said that two issues seem to hold some people back from getting on board: fear that their sensitive health information won’t be kept private or a general suspicion about the pharmaceutical industry.
“We have to comply with very strict confidentiality standards,” said Genest, adding that patients’ names will not be shared.