Why Cystic Fibrosis Patients in Canada Outlive Those in the U.S.

The following originally appeared on The Upshot (copyright 2017, The New York Times Company).

Cystic fibrosis is an inherited disorder that affects the lungs, pancreas, intestines and other organs. A genetic mutation leads to secretory glands that don’t work well; lungs can get clogged with thick mucus; the pancreas can become plugged up; and the gut can fail to absorb enough nutrients.

It has no cure. Over the last few decades, though, we have developed medications, diets and treatments for depredations of the disease. Care has improved so much that people with cystic fibrosis are living on average into their 40s in the United States.

In Canada, however, they are living into their 50s.

A recent study published in Annals of Internal Medicine used the Canadian Cystic Fibrosis Registry and the United States Cystic Fibrosis Foundation Patient Registry to determine how patients fared between 1990 and 2013. Researchers compared the longevity results in the two countries, and controlled for a number of factors, including age, sex, genotype, pancreatic status and more.

Over time, they found, the median life span for patients increased. But it increased faster in Canada. Between 2009 and 2013, the median life span was 40.6 years in the United States versus 50.9 in Canada.

One reason might have been that more Canadians with cystic fibrosis received lung transplants (10.3 percent) than their American counterparts (6.5 percent). In Canada, organs are allocated based on length of time on the waiting list. Because people with cystic fibrosis know they may need new lungs long before they become critically ill, they can sign up earlier and be on the list longer before they truly need a transplant. In the United States, organs are allocated based on disease severity; people with cystic fibrosis need to become very ill before they can get a lung, and fewer of them do.

Relatively few cystic fibrosis patients receive lung transplants, however, so it’s unlikely this is the real difference accounting for a decade of life.

Another difference might be nutrition. Older studies comparing cystic fibrosis survival between the two nations showed that aggressive nutritional support with a high-fat, high-calorie diet in the 1970s might have improved prospects for patients in Canada back then. Physicians in the United States instituted more appropriate diets for patients after studies in the 1970s and 1980s showed them to be superior, making inadequate nutrition a less likely culprit as well.

Further analysis revealed a much more significant association: insurance.

Canada has a single-payer health care system, which is similar to the American Medicare system. It covers all people in Canada, including those with cystic fibrosis. People in the United States receive their insurance — if they do at all — from a number of sources.

Compared with patients in the United States who had private insurance coverage, patients in Canada had a similar risk of early death. Compared with patients who had public insurance like Medicaid, Canadians with cystic fibrosis had a 44 percent lower risk of early death. And compared with Americans who were uninsured, Canadians had a 77 percent lower risk of early death.

A number of factors could be at play. Medications for cystic fibrosis can be expensive, and patients have to take many every day. About 45 percent of American patients with cystic fibrosis receive some form of Medicaid, which can limit the medications patients can get, the providers they can see and the therapies that are covered. For the uninsured, it can be even worse. Insurance, as well as the cost of care, remains a significant concern for people with cystic fibrosis.

No study is perfect, and it’s possible that insurance coverage might just be a marker for socioeconomic status in this analysis. Study after study has shown us that poverty is associated with worse outcomes for many diseases, cystic fibrosis included. Yet the poorest in the United States are more likely to have Medicaid than to be uninsured, and in this study they had better outcomes than those with no insurance at all.

Another fact hints at the power of Canada’s broad health insurance: Canadians tend to live an average of two years longer than Americans. While insurance, and access to the health care system, is certainly not the only factor that affects life expectancy, it’s hard to argue that it’s not at least one factor.

What’s even more compelling is that children and young adults with cystic fibrosis in the United States fare better than their international counterparts on certain health measures. It’s as people age — and, perhaps, as disparities mount — that Americans begin to fall behind.

The United States didn’t always lag in this respect. From 1974 through 1994, cystic fibrosis patients who lived in the United States consistently outlived patients living in other countries in North America, Europe and Australia. Americans have lost that advantage.

It’s easy to repeat the mantra that the United States has “the best health care system in the world.” But a system must be judged on its overall outcomes, and when that is done, America often comes up short.


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