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Why many MS sufferers resist taking drugs to slow the disease Add to ...

People diagnosed with multiple sclerosis learn to live with a chronic condition that can cause an array of symptoms, some debilitating, such as numbness, fatigue, vision problems and even paralysis.

For many, the medications designed to slow down the disease’s progression come with their own baggage, from side effects to high costs, inconvenience and pain.

It means the decision on whether to start a treatment regimen that will likely continue for years can seem almost as daunting as the diagnosis itself.

These drugs, known collectively as disease-modifying therapies (DMTs), are not a cure and don’t address a multitude of symptoms of MS, which eats away at the protective sheath covering nerves, disrupting the body’s ability to send important signals.

While there are drugs and other therapies that can help manage symptoms or stop episodic attacks of the disease, DMTs are the only approved drugs shown so far in large-scale clinical trials to help slow down the course of the disease.

“There are a number of challenges that patients have with the currently available medications,” said Mark Keegan, associate professor of neurology and section chair for MS and autoimmune neurology at the Mayo Clinic in Rochester, Minn.

A new study published this week in the journal Neurology found that benefits from DMTs come at a high economic cost. The researchers analyzed projected health-care costs, drug costs and lost productivity for a group of nearly 900 early-stage MS patients over a 10-year period. They found the cost of DMTs is drastically higher than what’s considered reasonable from a health economics perspective.

Although DMTs are typically more expensive in the United States, they are also costly here, ranging from $20,000 to $40,000 a year, according to the MS Society of Canada. Although many patients are covered by health-insurance plans, coverage varies across the country.

The authors say there is a pressing need for discussion on how to bring down the costs of these drugs.

“If we ignore the issues we’re never going to be able to make progress,” said lead author Katia Noyes, division chief of health policy and outcomes research at the University of Rochester Medical Center.

The findings also shed light on another important issue: While people with Type 1 diabetes, for instance, can quickly experience devastating health problems if they don’t inject themselves with insulin, that association isn’t as pronounced in MS.

The most common form of the disease, called relapsing-remitting, is characterized by an attack of new, or worsening, symptoms followed by weeks, months or even years of recovery and stability.

Since MS patients tend to feel well during those periods, many struggle with the notion of being injected with drugs several times a week to slow the disease’s progression. The drugs themselves can lead to problems, such as pain at the injection site, and side effects including flu-like symptoms.

“You can imagine your quality of life actually deteriorates for the first little while,” said Virender Bhan, director of the Dalhousie MS Research Unit in Halifax.

The limitations of conventional treatments may partly explain why some patients are willing to undergo a controversial surgical procedure proposed by Italian neurologist Paolo Zamboni.

Dr. Bhan said research has shown that some side effects of DMTs diminish over time, but it can be difficult to communicate the complexities of the issue to patients.

For that reason, some choose not to take the medications, putting themselves at risk for developing new lesions in the brain or spinal cord.

It’s a struggle with which Beth Button is all too familiar. The 29-year-old teacher in Fredericton was diagnosed with MS in 2006 while she was still a university student. She had to come to grips with the fact that even though she was the kind of person who never took Tylenol, medication could suddenly play a major role in her life.

“It’s huge,” said Ms. Button, who chronicles her experiences at buttonyourlip.blog.ca. “That’s a lot to handle when you’re young.”

Eventually she decided to start on disease-modifying therapy, because if she one day becomes disabled, “I want to know I did everything to make sure I prevent that.”

Ms. Button became part of a clinical trial for a new drug called fingolimod, the first oral DMT for MS.

The drug, approved in Canada earlier this year and sold under brand name Gilenya, has advantages for those averse to injections. But the downside is that it carries serious risks, such as decreased heart rate after the first dose and an increased risk of infections. Experts say they don’t yet fully understand why.

No MS drug is perfect, and until a cure is found, patients will continue to face difficult treatment decisions. Ms. Button cautions that when it comes to MS treatments, there simply is no right answer. “It’s a big decision to make and you can’t judge anyone for the choices they do decide to make.”

Follow on Twitter: @carlyweeks

 

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