Wednesday, November 25th, 2009 | 2:50 am
Canwest News Service
For the estimated 55,000 to 75,000 Canadians who have multiple sclerosis, recent years have brought bright hope mixed with enormous continuing challenges, says the Multiple Sclerosis Society of Canada.
The MS Society is the national organization that brings all Canadians together in a nationwide drive to educate, provide support, advocate for and raise the funds needed to find new treatments and, eventually, a cure for a disease that can destroy the quality of life and shorten lifespans of those who have it.
“We have come so far in the past 20 years on all those fronts but we still have so much we need to achieve,” says Deanna Groetzinger, vice-president of government relations and policy for the society.
Major breakthroughs include the widespread use of MRI technology, starting in the late 1980s. Physicians finally had a diagnostic tool that let them see the effect MS had on the brain in real time. That opened the door to the understanding that MS was a progressive disease characterized by alternating periods of relapse in remission in about 80% of patients.
Then in 1995 came the first effective therapy able to
slow progression of the disease. Injected anywhere from one to three times a week, it proved able to reduce relapses by about one-third. It was followed by a series of three more injectables, all of which had a similar effect.
In 2007, yet another new drug was introduced, this time infusion-based. Physicians generally prescribed it after the four first-line injectable treatments proved ineffective. While it required patients to go to a clinic once a month and spend a few hours being infused — much like chemotherapy for cancer — and while it did have potentially serious side effects in about one in 1,000 patients, the new therapy was hailed as a great improvement by many doctors, Ms. Groetzinger says.
For many patients, it reduced relapses by two-thirds and seemed to restore energy, mobility and clarity of mind — significant improvements in their quality of life.
“Each new therapy seems to build on the success of the previous ones,” Ms. Groetzinger says. “Having five available finally gave physicians and patients the ability to choose which best suited their own circumstances.
“We are also encouraged that there are an additional two drugs in the approval stage. Both can be taken orally, which is a major advance, and indications are that they will be approved for us within the next two years.”
But the new infusion therapy comes with a hitch: Paid for privately, treatment would cost about $40,000 a year and only four provincial drug plans list the new therapy among the drugs they will pay for. In Ontario, Saskatchewan and Alberta, it can only be prescribed after the four other therapies have failed, and in Quebec, it can only be prescribed for patients who have not yet tried any other therapies.
“Our feeling is that these are artificial restrictions,” she says. “We believe that once Health Canada has approved a drug it should immediately be available to all Canadians.”
Where you live should not determine the quality of care you receive, Ms. Groetzinger says. She and the society make a strong economic case to support their view. She points out that MS patients receiving therapy that allows them to continue as productive members of society — to work, care for children, avoid regular hospitalization — means they will be an economic asset to their community and the country.
To deny them therapy that greatly reduces relapses and diminishes quality of life means they become a liability, taking chunks out of the economic pie instead of continuing to add to it.
It is an intensely practical point of view, an approach that distinguishes all the programs the MS Society offers.
“Right now we have three major focuses,” Mr. Groetzinger says. “The first is to ensure access to all available therapies, the second is to provide income support for those who need it, and the third is better home care and support for patients and their families.”
The MS Society already offers a wide range of programs including information lines, educational seminars, 200 self-help groups across the country and financial assistance to those who need it to help pay for things such as wheelchairs and other devices that improve lives, says Nicole Mellin, assistant vice-president of client services.
“Across the country we have about 100 staff devoted to delivering client services and perhaps triple that number of volunteers,” she says. “Over the past five years we have staged more than 70 local educational seminars and reached an audience of 16,000 people. We have created 25 different publications available in hard copy or in PDF format on our website (www.mssociety.ca).” Client services is the local face of the society, the grass roots point of contact, information and support for those with MS and their family.
“Above all, we deliver a message of hope,” Ms. Mellin says. “Hope for better treatments, hope for a rewarding life despite the disease and, above all, hope for a cure.”
Reproduced from http://www.kelowna.com/2009/11/25/ms-society-offers-hope/