TORONTO - An expert panel's advice that provinces and territories not cover the cost of two Multiple Sclerosis drugs creates a system of two-tiered care, MS advocates say.
They view the recommendation as leaving people with the disease, who don't have private drug insurance, unable to afford medication that could slow progression of the condition and ease the pain they suffer.
Late last month, the Common Drug Review advised that governments not put the MS pain medication Sativex on the list of medicines that provincial and territorial drug plans cover for eligible people. That follows a "do not list" recommendation issued in the spring for Tysabri, a drug that slows progression of the disease.
Those decisions put these drugs out of reach for many people with MS, an expert and a spokesperson for the MS Society argue.
"It's frustrating, because as an MS doctor, I would like my patients that are on public assistance to have the same access to MS treatments as patients with private drug plans," says Dr. Paul O'Connor, head of the MS clinic at Toronto's St. Michael's Hospital.
"And they most certainly do not."
Private insurance programs, which are generally provided as an employment benefit, may cover the costs of the medications for people with MS who have drug coverage. But the reality of MS is that the progressive and debilitating nature of the disease robs many people with it of the ability to hold down a job.
"We're talking about a population that has challenges staying in the workplace, has challenges in terms of maintaining their status on private insurance," says Jon Temme, vice-president of research for the Multiple Sclerosis Society of Canada.
"Because the nature of the disease is such that over time and with the disease progressing a significant number of people - we estimate up to 80 per cent - are unable to work full time."
"Anything that keeps (medication) options away from them is of concern to us."
The MS Society estimates that between 55,000 and 75,000 Canadians have MS.
The Common Drug Review is a body set up by the federal, provincial and territorial governments to assess the efficacy and cost-effectiveness of new medications.
It convenes an expert panel comprised of people with backgrounds in medicine, epidemiology, clinical reviews and statistics to comb through the evidence - published and unpublished - on how well a drug works, how well it works compared to other available medications and how cost-effective it is.
"None of the decisions are taken lightly," says Sandy Pagotto, director of the Common Drug Review.
"Definitely the committee considers the evidence very seriously during their deliberations. It's a very strong process."
The body only has the power to recommend. It is up to individual provinces and territories to decide whether to heed or ignore the advice. But Temme said in the MS Society's experience, provinces may ignore advice to cover the cost of a drug, but rarely disagree when the Common Drug Review advises against paying for a medication.
"In our office we sometimes say that in the Common Drug Review, 'Yes' means 'Maybe' and 'No' means 'No,"' he says.
In the cases of Sativex (a cannabinoid-based product administered in an oral spray) and Tysabri (a once-a-month intravenous infusion) the body urged provinces not to list the high-cost medications, saying there were other, more cost-effective options.
O'Connor says that while some patients experience better pain relief with Sativex than with other available pain control drugs, the real loss is Tysabri.
The drug, which costs in the range of $40,000 a year, was approved for use in patients who have not responded to other available treatments aimed at slowing the progression of the disease. Temme says for some MS patients, Tysabri represents "the last option in terms of their ability to treat their MS."
And for others, including Ronalee Newham, the drug is superior to the alternatives. Newham, 29, is from Portage La Prairie, Man. She is the mother of two young children and she has been battling MS for the past 6½ years.
Newham was enrolled in a clinical trial for Tysabri, and took the drug for two years while in the trial. The symptoms of her disease virtually melted away while she was getting the drug, including the fatigue that at times can force her to sleep up to 18 hours a day.
A former competitive swimmer, Newham was able to return to the pool while on the drug, swimming 80 laps a day. But when the trial ended, so did her access to the drug. The drug plan she receives through her job - she works as support staff in a school - hasn't yet covered Tysabri, so she's on what she calls the "second best" treatment.
"I would have to say that on a really, really good day, I could probably go swim 20 laps as opposed to the 80 I would do on Tysabri," she says wistfully.
Newham wonders whether those studying the cost-effectiveness of the drug have factored in the savings accrued when people with MS spend less time in hospital, less time on disability and more time in the workforce, paying taxes.
"It doesn't make sense to me," she says.
"It's frustrating, that's for sure, to know where I could be and to know where I'm at. And that the only thing that's stopping me from being as good as I can be is money. It's very frustrating."
