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Toby Cox-Marchegiano has had 14 different cardiac surgeries and lives with a pacemakerFernando Morales/The Globe and Mail

Toby Cox-Marchegiano was born with congenital heart disease. She has had 14 different cardiac surgeries and lives with a pacemaker.

She is one of the lucky ones. In the past 50 years, childhood mortality linked to congenital heart defects has plummeted. Just a few generations ago, most babies born with serious heart problems never made it past their teens. Yet, Cox-Marchegiano and others like her are discovering that living with congenital heart disease as an adult can be extremely challenging. High medication costs, coupled with difficulty qualifying for insurance coverage, means many patients are forced to go on disability or live at home with their parents to get by.

"It's extremely expensive," said Cox-Marchegiano, who lives in Toronto. "Any kind of insurance ... it's more expensive for patients who have congenital heart problems."

Her monthly drug bill totals about $1,500. Because she runs her own business, Cox-Marchegiano doesn't have group insurance through an employer. While she was able to qualify for Ontaro's Trillium Drug Program, designed to help people with high drug costs, she hasn't been able to find affordable life insurance.

Cox-Marchegiano has fared better than other adults with congenital heart disease who struggle to live independently due to health-related costs. The Canadian Congenital Heart Alliance estimates there are 100,000 adults with congenital heart disease across the country, outnumbering those living with well-recognized conditions, such as multiple sclerosis. About half of all adults with congenital heart disease will require multiple surgeries, have serious complications or experience other problems that require continuous care throughout their lives. This compromises their ability to work full-time and afford the medications they need. And because they are perceived as high-risk, adults with congenital heart disease often can't get insurance, or are told they must pay steep premiums, said Shelagh Ross, president of the Canadian Congenital Heart Alliance, a national patient advocacy group. It's a frustrating cycle that affects thousands of people across Canada.

"It's a huge worry," said Ross. "A lot of us don't have insurance. We just can't afford it."

Wendy Hope, vice-president of external relations with the Canadian Life and Health Insurance Association, said people who don't work full-time can still access drug coverage through public plans aimed at those with high drug costs relative to their income. Otherwise, the insurance industry simply isn't designed to provide affordable coverage to individuals deemed high-risk.

"As much as we would like to provide everyone with access and not have to pay out of their pockets, there are some people who may not be able to do that," she said.

The health-care system is still focused on treating children with congenital heart problems. As a result, there are scant resources available for adults living with congenital heart disease, Ross said. This means many patients are missing important preventive measures, such as continuous monitoring of their heart health, and face a greater risk of emergency hospitalization – a huge cost to the system. The Canadian Congenital Heart Alliance says there are only 15 adult specialty clinics in Canada and only 23 per cent of adults with congenital heart disease are currently getting treatment in those centres.

The insurance industry also hasn't caught up to the reality that most people born with congenital heart disease will survive into adulthood, Ross said. The Canadian Congenital Heart Alliance is hoping to change that by speaking out about what it means to be an adult with congenital heart disease.

"We have patients in their 70s who have never been able to get insured," Ross said. "The system needs to keep up."

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