Life insurance and Congenital Heart Disease


Since I co-founded the Canadian Congenital Heart Alliance 10 years ago, one of the complaints I hear regularly from congenital heart patients is that they can’t get life insurance. Despite being in my 50s, stable, healthy and fit, the heart defect I’ve had since birth has blocked me from accessing life insurance through my work too. This is because all of us have a pre-existing condition – one that we were born with – that puts us at risk of medical problems and premature death. Insurance companies see us as a poor risk –and who can blame them? They are basing their calculations on historical statistics, when most of us didn’t reach our 20s! When I was born in 1962, the survival rate for someone with my heart defect (tetralogy of Fallot) was around 20%.


But this is 2014, and thanks to outstanding advancements in medical care, research, and interventions, now about 95% of congenital heart patients are surviving into adulthood, and many have a life expectancy on par with their healthy peers. There are people I know with my defect that are in their 70s (and likely some I don’t know in their 80s). In Canada, there are now more than 100,000 adults with congenital heart defects (and around 80,000 kids). And that number will increase as more and more kids survive into adulthood. Many of us will live normal lives with children of our own, and we require the occasional follow-up surgeries to repair leaky valves and patches. Some of us will require devices, like pacemakers and defibrillators, to control abnormal heart rhythms. And as in the general population, some of us won’t fare as well. But all in all we won’t be too unlike “healthy” Canadians.


Until insurance companies catch up, and recognize that we’re a growing population of potential customers who may live into our 80s and beyond, accessing life insurance will be difficult – but not impossible. We are all eligible for non-medical term life insurance. For those of us with families to consider, the cost may be well worth it.


If you’re looking for life insurance, I recommend taking the time to explore your options. You may be pleasantly surprised, or you may decide it’s not the right fit for you right now. If you aren’t happy with your quote, speak to your agent for advice.


By Shelagh Ross

President, Canadian Congenital Heart Alliance

The Canadian Congenital Heart Alliance (CCHA) is a volunteer-run registered charity that supports and advocates for Canadians with congenital heart disease. Our mission is to improve the quality of life and health outcomes for individuals with congenital heart defects by raising awareness, providing peer support and mentoring, advocacy, and advancing research.




To learn more about us and/or to become a member (it’s free), visit