Patients with Cystic Fibrosis Survive Longer in Canada than in the U.S.

New research reveals startling survival gap between Canadians and Americans with genetic disease, raises questions about how to improve care
cystic fibrosis in lungs

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A new study published in the Annals of Internal Medicine and reported by Fox News shows that Canadians with cystic fibrosis live up to 10 years longer than Americans who have the same illness. The study, funded by the United States Cystic Fibrosis Foundation, suggests that access to lung transplants and health insurance might play a role in the differing survival rates.

Currently more than 30,000 Americans and 70,000 people around the world are living with cystic fibrosis. The disease is a genetic illness that is contracted by inheriting defective genes from both parents. Cystic fibrosis sufferers experience a build-up of mucus in the lungs that makes them prone to fatal respiratory infections and respiratory failure. Thick mucus also blocks the flow of enzymes important to digestion, which interferes with the absorption of nutrients.

girl with Cystic fibrosis

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Thanks to earlier diagnosis and improvements in treatments, more children are surviving into adulthood and middle age. This is a huge feat coming from just decades ago when sick children rarely survived elementary school.

But researchers who analyzed data from national cystic fibrosis registries in each country from 1990 to 2013 report that median survival for an American with the disease is 41 years of age. The median survival for a Canadian is 51 years.

Dr. Anne Stephenson of St. Michael’s Hospital in Toronto, who led the study, claims that “these statistics are sobering.”

Drs. Patrick Flume of the Medical University of South Carolina and Donald VanDevanter of Case Western Reserve University wrote in an accompanying editorial that the findings mark “a hard reality we must accept.”

“Now we are faced with the more difficult task of trying to identify and implement solutions to bridge the survival gap,” they said.

Differing Approaches to Care

But why does the survival gap exist at all? According to doctors and other researchers, it may be due to differences in the two nations’ health care systems. But there are other possible causes, such as the higher proportion of Canadian patients who receive a life-prolonging lung transplant (10.3%) compared to American patients (6.5%).

medical care

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Canada also adopted better nutritional care for children with cystic fibrosis in the 1970s, a decade before the United States. This leans toward the difference likely affecting survival only among older age groups.

Survival rates for Americans with private health insurance mirrored those of Canadians, who have universal health coverage. However, U.S. patients on Medicaid, which also provides access to sophisticated CF treatment centers, did not live as long. Dr. Bruce Marshall of the Cystic Fibrosis Foundation believes that poverty plays a large role in that disparity. “Even with Medicaid, it’s still hard to take time off work, find child care and travel to a clinic,” he said.

Survival gap aside, there is still no cure for cystic fibrosis. “We’re about finding the best care wherever it is and trying to understand, if Canada’s got better outcomes, how do they do that so we can copy it,” said Dr. Marshall.

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