Young Woman Faces Insurance Hoops Due to Father With Huntington’s

Theresa Boyle

When Katie Lingard was taking steps to set up a chiropractic practice four years ago, the soon-to-be graduate couldn’t help but notice she was being treated differently than her classmates by insurance companies who came to their college to drum up business.

The insurers were hesitant to give the healthy 25-year-old the mandatory insurance she needed to get her practice off the ground.

Among the questions on application forms was one about medical history, specifically was there any Huntington’s disease in her family? In Lingard’s case there is; her father has the neurodegenerative disease. The Toronto woman was told by one provider that if she wanted coverage she should get a blood test proving she didn’t carry the Huntington’s gene.

Since then, Lingard has been fighting for an end to genetic discrimination. The battle is taking her to Queen’s Park on Wednesday when a private member’s bill is being introduced to amend the Ontario Human Rights Code to halt the practice.

“As Canadians, it is instilled in us that people not be discriminated against based on a disability, yet insurance companies discriminate freely based on
a perceived and potential future disability. It just doesn’t make sense,” she says.

Lingard had no desire to know whether she carried the gene for Huntington’s, but she says she felt bullied by the insurers to get genetically tested. She
had her blood drawn, but before the results came back, she found a provider willing to give her insurance, including critical illness and life coverage,
albeit with higher premiums and lower payouts. She contacted the lab and asked that the results be sealed.

Today, Lingard still doesn’t want to know if she carries the gene. When she returns to her hometown of Chatham, she assists in caring for her father, wiping drool from his face, picking him up when he falls and helping him shower. It would be too overwhelming to know she faced the same destiny, she says.

“It doesn’t need to be this hard,” she says of her battle with the insurers. “It is already hard enough.”

Liberal MPP Mike Colle (Eglinton-Lawrence) is introducing the private member’s bill, which would amend the Human Rights Code to include “genetic characteristics” as a prohibited ground of discrimination, along with race, marital status and disability.

“There have been wonderful research advancements in finding these genes. But we have to make sure, like with all scientific advancements, they don’t harm people,” Colle says.

The bill, if passed, would prohibit insurance providers from denying coverage or charging higher premiums based solely on a genetic predisposition to disease. It would also prohibit employers from taking into account employees’ genetic background in hiring, firing or promoting.

“I am sure if they did genetic analyses on all of us, they would find certain genes that could rule us out as predictor of good health. I’m just saying
there has to be a limit to this. Let’s be careful with where we are going with this and don’t use it to deny people their rights,” Colle says.

Frank Zinatelli, vice president and general counsel for the Canadian Life and Insurance Association, argues that requiring someone with a higher risk of
illness to pay higher premiums is only fair to other policyholders.

“If you don’t assess the risk properly then what you are really saying is let somebody else pay for my risk,” he says, noting that pooling risk is the whole
concept behind insurance.

“Who do we want to pay for someone who is a higher risk? Is it the job of other policyholders?” he asks.

Zinatelli noted that the industry does not require that genetic testing be done in order to get coverage. But if genetic testing has been done, then an
insurer would request access to the results just as it would for other aspects of an applicant’s health history, he says.

Jo Anne Watton, of the Canadian Coalition for Genetic Fairness, is thrilled about the private member’s bill and says Canadian jurisdictions lag behind jurisdictions in the U.S., Europe and other developed countries in acting against genetic discrimination.

“As science emerges, it is going to become an even more important issue,” Watton says, noting that the Human Genome Project hadn’t even begun back in the ‘80s when the Ontario Human Rights Code was originally written.

The coalition is made up of the Huntington Society of Canada, ALS Society of Canada, Alzheimer Society of Canada and other organizations representing people with genetic diseases that are questioned on insurance forms.

Bev Heim-Myers, CEO of the Huntington Society of Canada, says protection against genetic discrimination is necessary so that people can get the insurance they need to start health-care practices, buy homes and
“lead the best lives that they can live.”

Without such protection, people with a family history of a genetic disease might decide not to get genetically tested. That in turn would lead to a reduction
in the number of people available to participate in clinical trials that could lead to treatments and cures, she warned.

A similar private member’s bill was introduced at the federal level last year but it died on the order paper when the election was called.

Reproduced from–young-woman-faces-insurance-hoops-due-to-father-with-huntington-s