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MS 109236 Newsletter ENG - Multiple Sclerosis Society of Canada

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Volume 34 Number 1 Spring 2007<br />

We are very proud to announce an<br />

important new initiative to support<br />

Canadian youth directly affected by<br />

multiple sclerosis. The <strong>MS</strong> <strong>Society</strong><br />

<strong>of</strong> <strong>Canada</strong> Scholarship Program<br />

will <strong>of</strong>fer scholarships to assist with<br />

post-secondary education for<br />

teenagers and young adults who<br />

have <strong>MS</strong> or have a parent who lives<br />

with the disease. The program was<br />

launched in early February and is<br />

now accepting applications for<br />

funding toward 2007/2008 full- or<br />

part-time education.<br />

Early last year, Aaron Solowoniuk<br />

<strong>of</strong> Juno Award-winning Canadian<br />

punk rock band Billy Talent, publicly<br />

announced that he has lived with <strong>MS</strong><br />

for close to a decade. He has been<br />

working with the <strong>MS</strong> <strong>Society</strong> on<br />

ways to raise funds and awareness<br />

among teenagers and young adults.<br />

The result is the <strong>MS</strong> <strong>Society</strong> <strong>of</strong><br />

<strong>Canada</strong> Scholarship Program, supported<br />

by Billy Talent and Friends.<br />

Aaron Solowoniuk and Billy Talent<br />

have been involved in<br />

a number <strong>of</strong> fundraising<br />

initiatives in support<br />

<strong>of</strong> the <strong>MS</strong> <strong>Society</strong><br />

<strong>of</strong> <strong>Canada</strong> Scholarship<br />

Program. Warner Music <strong>Canada</strong> has<br />

donated $50,000, based on first-week<br />

sales <strong>of</strong> Billy Talent II. And Billy<br />

Talent, along with Alexisonfire and<br />

We are pleased to welcome<br />

Yves Savoie as<br />

president and chief<br />

executive <strong>of</strong> the<br />

<strong>Multiple</strong> <strong>Sclerosis</strong><br />

<strong>Society</strong> <strong>of</strong> <strong>Canada</strong> and<br />

director (ex <strong>of</strong>ficio) <strong>of</strong><br />

the <strong>MS</strong> Scientific<br />

Research Foundation.<br />

“Speaking on behalf <strong>of</strong><br />

the national board <strong>of</strong> directors,”<br />

says Lou Maroun, chair <strong>of</strong> our<br />

national board <strong>of</strong> directors, “We are<br />

very pleased to welcome Yves as<br />

our new chief executive. We are<br />

confident that his exceptional leadership<br />

skills and insights will<br />

strengthen our organization in every<br />

way, and benefit everyone we serve<br />

and support.” Before joining us on<br />

February 7, Yves was executive<br />

Tysabri<br />

now<br />

available<br />

see page 9<br />

New scholarship program opens<br />

doors for youth<br />

Highlights Inside<br />

WALK momentum grows 2<br />

Award-winning actions 3<br />

Advocacy issues 4<br />

Fiscal financials 11<br />

Moneen, recently performed a benefit<br />

concert in Toronto in support <strong>of</strong><br />

the project. Tickets for the show,<br />

continued on next page<br />

Chief executive begins new era<br />

director <strong>of</strong> the Family<br />

Service Association <strong>of</strong><br />

Toronto, serving vulnerable<br />

families and<br />

individuals facing a<br />

variety <strong>of</strong> challenges.<br />

And from 1998 to<br />

2003, he was national<br />

executive director <strong>of</strong><br />

Muscular Dystrophy<br />

<strong>Canada</strong> and a passionate advocate<br />

for the inclusion <strong>of</strong> people with disabilities.<br />

Yves also teaches nonpr<strong>of</strong>it<br />

management in the MBA program<br />

at York University and is vicechair<br />

<strong>of</strong> the board <strong>of</strong> Imagine<br />

<strong>Canada</strong>. Yves takes over from the<br />

retiring Alistair Fraser, who led the<br />

<strong>Society</strong> for 25 years in its goal to<br />

provide strong and effective support<br />

to people living with <strong>MS</strong>.


continued from cover<br />

which sold out in eight minutes, netted<br />

an additional $20,000 for the<br />

scholarship program.<br />

The <strong>MS</strong> <strong>Society</strong> <strong>of</strong> <strong>Canada</strong><br />

Scholarship Program will grant<br />

awards <strong>of</strong> $500, $750 or $1000 to<br />

each successful candidate. Awards<br />

to part-time students will be prorated<br />

based on credit hours. The<br />

number <strong>of</strong> awards available each<br />

year will depend on funding and the<br />

quality <strong>of</strong> the applications. In 2007,<br />

we expect to award scholarships<br />

totaling $80,000.<br />

All applicants must meet basic<br />

eligibility criteria, fully complete<br />

the application, and submit by<br />

April 15. Scholarship Management<br />

Services, a non-pr<strong>of</strong>it educational<br />

support and student aid service<br />

organization, will select scholarship<br />

finalists on the basis <strong>of</strong><br />

demonstrated financial need, aca-<br />

It’s time to get closer<br />

to a cure! The<br />

Super Cities WALK<br />

for <strong>MS</strong> is held<br />

every year to raise<br />

money for <strong>MS</strong><br />

research and services.<br />

This year, it will<br />

bring people<br />

together in 160<br />

communities across<br />

<strong>Canada</strong> in the<br />

spring and early fall. Last year,<br />

69,000 Canadians WALKed or<br />

wheeled to raise over $12 million<br />

with the support <strong>of</strong> their friends<br />

<strong>MS</strong> <strong>Canada</strong>, Spring 2007, p. 2<br />

demic record,<br />

leadership and<br />

participation in<br />

school or community<br />

activities,<br />

work experience,<br />

statement <strong>of</strong> educational<br />

and<br />

career goals, an<br />

outside appraisal,<br />

unusual personal<br />

or family<br />

circumstances, and an essay on the<br />

impact <strong>of</strong> <strong>MS</strong> on their life.<br />

The National Client Services<br />

department <strong>of</strong> the <strong>MS</strong> <strong>Society</strong> <strong>of</strong><br />

<strong>Canada</strong> will convene a panel <strong>of</strong><br />

reviewers (both volunteers and<br />

staff) to make the final scholarship<br />

decisions.<br />

Applications are available to<br />

download from our website at:<br />

www.mssociety.ca until the closing<br />

The Super Cities WALK for <strong>MS</strong>:<br />

Taking a step closer to a cure<br />

and family, and hundreds<br />

<strong>of</strong> <strong>MS</strong> <strong>Society</strong><br />

volunteers.<br />

Register now for<br />

the 2007 Super<br />

Cities WALK for <strong>MS</strong><br />

in your community.<br />

This is a fun, familyfriendly<br />

event for<br />

people <strong>of</strong> all ages.<br />

WALK sites have<br />

routes with varying<br />

distances and wheel-chair accessible<br />

paths. For more information,<br />

visit www.supercitieswalk.com or<br />

call 1-800-268-7582.<br />

Accepting a great gift for<br />

Canadian youth from Aaron<br />

Solowoniuk (centre) <strong>of</strong> punk rock<br />

band Billy Talent are (left to<br />

right) Jon Temme, vice-president<br />

client services, Caroline Horcher,<br />

supervisor fundraising events<br />

and events media, Helga<br />

Schnider, assistant vice-president<br />

Ontario fundraising, and former<br />

chief executive Alistair Fraser.<br />

Volume 34, No 1, Spring 2007<br />

Published by the<br />

<strong>Multiple</strong> <strong>Sclerosis</strong> <strong>Society</strong> <strong>of</strong> <strong>Canada</strong><br />

175 Bloor St. E., Suite 700<br />

Toronto ON M4W 3R8<br />

Tel: (416) 922-6065<br />

Fax: (416) 922-7538<br />

Toll free: 1-866-922-6065<br />

Website: www.mssociety.ca<br />

Charitable Registration<br />

no. 10774 6174 RR0001<br />

Our Mission: To be a leader in finding<br />

a cure for multiple sclerosis and<br />

enabling people affected by <strong>MS</strong> to<br />

enhance their quality <strong>of</strong> life.<br />

President & Chief Executive:<br />

Yves Savoie<br />

Editor: Marianne Chilco<br />

Translator: Charlotte deCelles<br />

ISSN 0315-1131 – Issued quarterly<br />

Canadian Publications Mail Product<br />

Sales Agreement No. 40063383


Congratulations and thank you<br />

to our 2006 award recipients<br />

1<br />

National President’s Award –<br />

Scott Gillis (photo 1)<br />

Diagnosed with <strong>MS</strong> 13 years ago,<br />

Scott Gillis is a lawyer and partner<br />

with the law firm Waterbury<br />

Newton in Wolfville, Nova Scotia.<br />

Since 1998, Scott has been<br />

involved in fundraising, social<br />

action and client services, has<br />

served as legal counsel and is a<br />

director on the Atlantic Division<br />

board. As past chair <strong>of</strong> the Social<br />

Action Committee, Scott successfully<br />

lobbied for provincial drug<br />

coverage for <strong>MS</strong> drug therapies and<br />

has become the voice <strong>of</strong> people living<br />

with <strong>MS</strong> in Atlantic <strong>Canada</strong>.<br />

National Opal Award – Robin<br />

Rankine (2)<br />

The Opal Award acknowledges<br />

the dedication and devotion displayed<br />

by Jack Opal and his<br />

daughter Minda in supporting and<br />

caring for Evelyn Opal, a founding<br />

member <strong>of</strong> the <strong>MS</strong> <strong>Society</strong> <strong>of</strong><br />

<strong>Canada</strong>, in her personal struggle<br />

with <strong>MS</strong>. This year’s recipient <strong>of</strong><br />

the national award is Robin<br />

Rankine <strong>of</strong> B.C., in recognition <strong>of</strong><br />

her outstanding commitment and<br />

care <strong>of</strong> her husband Ian and broth-<br />

2 3 4 5<br />

er Simon Porteous. Robin is a<br />

strong advocate for services, programs<br />

and resources, and has been<br />

a steering committee member for<br />

White Rock’s WALK for <strong>MS</strong> and<br />

a keen fundraiser.<br />

National Award <strong>of</strong> Merit,<br />

Member - Dr. A. Dessa<br />

Sadovnick (3)<br />

Dr. A. Dessa Sadovnick, principal<br />

investigator in the Canadian Collaborative<br />

Project on Genetic<br />

Susceptibility to <strong>MS</strong>, was awarded<br />

the National Award <strong>of</strong> Merit<br />

for her outstanding contribution<br />

in furthering our work on a<br />

national basis. Dr. Sadovnick’s<br />

mother and aunt were among<br />

those who worked with Evelyn<br />

Opal in the 1940s to form the<br />

Montreal <strong>MS</strong> group that evolved<br />

into the <strong>MS</strong> <strong>Society</strong> <strong>of</strong> <strong>Canada</strong>.<br />

“When I became interested in<br />

genetics,” says Dr. Sadovnick, “It<br />

was Evelyn Opal who said to me<br />

‘writers are always told to write<br />

about what they know, so why<br />

don’t you study what you know –<br />

multiple sclerosis’. I took that<br />

advice and began my work on the<br />

genetics <strong>of</strong> <strong>MS</strong>.”<br />

National Award <strong>of</strong> Merit, Non-<br />

Member – CanWest Global (4)<br />

Global’s national news anchor,<br />

Kevin Newman (left) accepts this<br />

year’s National Award <strong>of</strong> Merit from<br />

media relations manager Stewart<br />

Wong. In 15 years, Global’s support<br />

has grown from regional partnerships<br />

in the early 90s to national<br />

sponsor <strong>of</strong> the Super Cities WALK<br />

in 2006. Kevin Newman has been a<br />

strong advocate for the <strong>MS</strong> cause<br />

and the <strong>MS</strong> <strong>Society</strong> <strong>of</strong> <strong>Canada</strong> is<br />

proud to have him as key supporter.<br />

John Alexander Media Award<br />

The Toronto Sun’s Jason Paul (left)<br />

received the print media award for A<br />

Noble Cause, a poignant story <strong>of</strong> an<br />

Ontario woman with <strong>MS</strong> who overcomes<br />

some <strong>of</strong> her mobility challenges<br />

with the help <strong>of</strong> her dog,<br />

Noble. CTV’s medical/health correspondent<br />

Avis Favaro and W-Five<br />

producer Brett Mitchell accepted the<br />

broadcast journalism award for The<br />

Pioneers, a W-Five segment documenting<br />

the journey <strong>of</strong> Dyan Dixon<br />

who underwent a ground-breaking<br />

but risky procedure involving bone<br />

marrow transplant in the hopes <strong>of</strong><br />

arresting progress <strong>of</strong> <strong>MS</strong>.<br />

<strong>MS</strong> <strong>Canada</strong>, Spring 2007, p. 3


Government<br />

Relations<br />

Closing in on income<br />

support gap<br />

One <strong>of</strong> the <strong>MS</strong> <strong>Society</strong>’s priority<br />

disability income issues was featured<br />

on the front page <strong>of</strong> The<br />

Globe and Mail in late December.<br />

The article broke the news that<br />

the federal government is possibly<br />

looking at ways to close an<br />

income support gap faced by<br />

many people with moderate or<br />

episodic disabilities and illness.<br />

The article also featured <strong>MS</strong><br />

<strong>Society</strong> member Cheryl Elliott <strong>of</strong><br />

Ottawa, who described her dilemma<br />

<strong>of</strong> not being disabled enough to<br />

qualify for <strong>Canada</strong> Pension Plan<br />

disability benefits once her 15<br />

weeks <strong>of</strong> Employment Insurance<br />

(EI) was finished.<br />

This is a situation experienced<br />

by many people with <strong>MS</strong>, whose<br />

symptoms come and go, as well as<br />

others with arthritis, lupus, AIDS<br />

and some types <strong>of</strong> cancer. The <strong>MS</strong><br />

<strong>Society</strong> is recommending to government<br />

that both EI and CPP disability<br />

benefits be more flexible<br />

so people can work part-time and<br />

receive benefits part-time.<br />

The Globe and Mail said the<br />

study by University <strong>of</strong> Victoria<br />

pr<strong>of</strong>essor Michael Prince suggests<br />

extending EI benefits, introducing<br />

a CPP program to cover partial<br />

disabilities or creating a new program<br />

for people with episodic disabilities.<br />

The <strong>MS</strong> <strong>Society</strong> will continue to<br />

work on moving this important<br />

issue forward.<br />

<strong>MS</strong> <strong>Canada</strong>, Spring 2007, p. 4<br />

<strong>MS</strong> <strong>Society</strong> calls for <strong>MS</strong> drug<br />

coverage in 2007<br />

Across the country, provincial funding<br />

<strong>of</strong> the disease modifying therapies<br />

(DMTs) are based on two sets<br />

<strong>of</strong> criteria: medical and financial. In<br />

Newfoundland and Labrador, the<br />

medical eligibility criteria may be<br />

consistent with most other<br />

provinces but the financial eligibility<br />

criteria are not.<br />

While the provincial government<br />

covers drug costs for people on<br />

social assistance, low-income seniors<br />

and those in long-term care, the<br />

<strong>MS</strong> <strong>Society</strong> in Atlantic <strong>Canada</strong> estimates<br />

that over 600 people with<br />

<strong>MS</strong> in the province do not have<br />

access to needed therapies because<br />

they do not meet the government’s<br />

eligibility criteria. Many others<br />

with <strong>MS</strong> have been forced to quit<br />

their jobs and go on social assistance<br />

to qualify for drug coverage.<br />

“You essentially have to be living<br />

in poverty in order to get any kind<br />

<strong>of</strong> assistance,” says Sean Kirby,<br />

chair <strong>of</strong> the Atlantic Division gov-<br />

Information for people with disabilities<br />

on the <strong>Canada</strong> Revenue<br />

Agency (CRA) website (www.craarc.gc.ca)<br />

has been expanded. As<br />

well, a new publication by Service<br />

<strong>Canada</strong> called Services for People<br />

with Disabilities provides an<br />

overview <strong>of</strong> Government <strong>of</strong> <strong>Canada</strong><br />

ernment relations committee and<br />

vice chair <strong>of</strong> the board. “So we’re<br />

seeing moms and dads getting<br />

divorced and young couples holding<br />

<strong>of</strong>f on having children or saving<br />

for retirement just so they can get<br />

the drugs they need to manage their<br />

disease and slow its progression.<br />

It’s disgraceful.”<br />

The Atlantic Division has developed<br />

an intense government and<br />

public relations strategy that is<br />

generating significant media coverage.<br />

“We’re mobilizing our<br />

grassroots volunteers to write letters<br />

to the Premier, book meetings<br />

with their Members <strong>of</strong> the House<br />

<strong>of</strong> Assembly, call into talk radio<br />

shows and write letters to the editor,”<br />

says Kirby. “The response<br />

from provincial and local media<br />

has been tremendous.”<br />

And, by working closely with the<br />

opposition parties and involving<br />

community leaders and health care<br />

pr<strong>of</strong>essionals, the <strong>MS</strong> <strong>Society</strong><br />

intends to keep up the momentum<br />

and pressure on the government<br />

The right tax information can<br />

save you money<br />

services and programs for people<br />

with disabilities. It is available at<br />

www.pwd-online.ca or by calling 1-<br />

800-622-6232. And an article on tax<br />

tips for people with <strong>MS</strong>, their caregivers<br />

and families is on the <strong>MS</strong><br />

<strong>Society</strong> website at www.mssociety.ca<br />

[keyword: tax tips].


COMBINATION THERAPY:<br />

A new treatment strategy for <strong>MS</strong>?<br />

Are two (or more)<br />

drugs better than<br />

one? This is the<br />

concept at the core<br />

<strong>of</strong> researchers’ current<br />

interest in<br />

exploring combination<br />

therapy as a<br />

new strategy for<br />

treating and managingrelapsingremitting<br />

<strong>MS</strong>. The<br />

Dr. Jock Murray<br />

approach, which<br />

has had success in epilepsy and some cancers,<br />

is now being investigated in connection<br />

with <strong>MS</strong>.<br />

“Many lymphomas and leukemias can<br />

now be cured but there’s never been a<br />

magic bullet for these disorders,” says Dr.<br />

Jock Murray, pr<strong>of</strong>essor <strong>of</strong> neurology at<br />

Dalhousie University in Halifax and one <strong>of</strong><br />

the founding fathers <strong>of</strong> <strong>MS</strong> clinics in<br />

<strong>Canada</strong>. “Instead, it has been a long<br />

process <strong>of</strong> developing combinations <strong>of</strong> different<br />

therapies.”<br />

The question <strong>of</strong> whether multiple treatments<br />

working together will prove more<br />

beneficial than one treatment working alone<br />

is particularly crucial in <strong>MS</strong> since current<br />

treatments are only partially effective.<br />

Current <strong>MS</strong> therapies are designed to<br />

reduce inflammation in the hope that this<br />

will reduce the amount <strong>of</strong> degeneration<br />

and ultimately affect progression <strong>of</strong> the<br />

disease.<br />

The medications work by different<br />

mechanisms:<br />

• The interferons – Avonex, Betaseron<br />

and Rebif – by reducing the T-cells’ ability<br />

to enter the central nervous system;<br />

also, inducing anti-inflammatory chemicals<br />

to occur;<br />

• Glatiramer acetate (Copaxone), by inducing<br />

the T-cells to behave as anti-inflammatory<br />

cells, which can then enter the<br />

central nervous system and reduce<br />

inflammatory activity;<br />

• And now, natalizumab (Tysabri), by blocking<br />

T-cells from binding to the blood-brain<br />

barrier, thus preventing them from migrating<br />

from the bloodstream into the brain.<br />

These current therapies provide a handy<br />

starting point for combination studies in the<br />

lab and in clinical trials.<br />

Dr. Amit Bar-Or, a neurologist and neuroimmunologist<br />

at the Montreal<br />

Neurological Institute explains: “Most <strong>of</strong> the<br />

therapies that have been approved to date,<br />

based on the clinical trial data, have shown<br />

in their Phase 3 clinical studies that the<br />

drugs, be it one <strong>of</strong> the interferons or<br />

Copaxone, will decrease new MRI activity<br />

by certain parameters such as relapse rate<br />

by about 30-40% on average. Having treatments<br />

is better than no treatment but the<br />

question is, can we do more than 30-40%?<br />

Can we get 60, 70, 80% or more?”<br />

The concept <strong>of</strong> combination therapy for <strong>MS</strong><br />

strives to achieve this 60% to 80% efficacy by<br />

combining medicines that target <strong>MS</strong> by differ-<br />

<strong>MS</strong> <strong>Canada</strong>, Spring 2007, p. 5


ent but complementary<br />

mechanisms <strong>of</strong><br />

action, hopefully<br />

without significantly<br />

increasing complications<br />

or side-effects.<br />

That is the ideal.<br />

In <strong>MS</strong>, it is<br />

believed that the<br />

immune system’s<br />

immune cells,<br />

including T-cells,<br />

Dr. Amit Bar-Or<br />

cross the blood<br />

brain barrier, enter the central nervous system<br />

– the brain and spinal cord – and attack<br />

components <strong>of</strong> myelin, the insulation that<br />

protects nerves, as well as the nerves themselves.<br />

This causes inflammation and<br />

destruction <strong>of</strong> myelin and axons.<br />

If the trials prove positive, combinations<br />

made up <strong>of</strong> current <strong>MS</strong> treatments could<br />

likely be among the first available. Also on<br />

the horizon are regimens possibly combining<br />

one <strong>of</strong> the injectable therapies with one<br />

or more <strong>of</strong> the oral therapies being studied<br />

for use in <strong>MS</strong>, or even combining two different<br />

oral medications.<br />

Some combinations under investigation<br />

Avonex and Copaxone<br />

The first large-scale clinical trial testing the<br />

combined use <strong>of</strong> Avonex and Copaxone for<br />

relapsing-remitting <strong>MS</strong> is underway in 80<br />

medical centres across North America,<br />

including <strong>MS</strong> clinics in Calgary, Ottawa and<br />

Toronto. Known as the CombiRx trial, it<br />

seeks to determine whether treating a person<br />

with Avonex and Copaxone together is<br />

<strong>MS</strong> <strong>Canada</strong>, Spring 2007, p. 6<br />

more effective in reducing relapse rates<br />

than treatment with either drug alone. The<br />

trial is also investigating the safety and tolerability<br />

<strong>of</strong> this combination. The study is<br />

following 1000 people for 3 years. Results<br />

are expected in late 2009.<br />

This trial typifies some <strong>of</strong> the challenges<br />

<strong>of</strong> clinical trials for combination therapies: a<br />

large number <strong>of</strong> patients must be recruited<br />

and studied, and followed over a long time,<br />

which increases the cost <strong>of</strong> the trial and,<br />

ultimately, the cost <strong>of</strong> the drug.<br />

The CombiRx trial has no placebo-only<br />

group, reflecting current thinking that, in a<br />

serious disease like <strong>MS</strong>, it is ethically difficult<br />

to put a patient on a placebo for three<br />

years when therapy is available.<br />

Tysabri and Avonex<br />

Tysabri has been studied in combination<br />

with Avonex, however, in a major <strong>MS</strong> study,<br />

two people developed a severe brain infection<br />

caused by a virus in a rare but <strong>of</strong>ten<br />

fatal disease called progressive multifocal<br />

leukoencephalopathy (PML). The affected<br />

patients had been taking Tysabri for more<br />

than two years in combination with Avonex.<br />

Another patient with Crohn’s disease (not<br />

taking Avonex, but with prior treatment with<br />

other immune therapies) also has a similar<br />

complication. This led to the drug companies’<br />

voluntary removal <strong>of</strong> Tysabri from the<br />

market, a halting <strong>of</strong> all clinical trials involving<br />

Tysabri, and a delay in Tysabri’s<br />

release in <strong>Canada</strong> as a treatment for <strong>MS</strong>.<br />

Tysabri was eventually approved by Health<br />

<strong>Canada</strong> in 2006 but as monotherapy – to<br />

be used on its own. Additional research is<br />

needed to clarify the risks and benefits <strong>of</strong>


“For us to use combination<br />

therapy, the effectiveness <strong>of</strong><br />

the combination would have<br />

to be significantly better than<br />

a single therapy.”<br />

the Tysabri/Avonex combination.<br />

The Tysabri experience highlights another<br />

<strong>of</strong> the challenges <strong>of</strong> combining therapies: in<br />

pursuing a greater effect, you may also be<br />

increasing the risks. It has had a sobering<br />

effect on some <strong>of</strong> the excitement surrounding<br />

combination studies in <strong>MS</strong>.<br />

Mitoxantrone and Copaxone<br />

Mitoxantrone (Novantrone) is an immune suppressant<br />

used in cancer treatment. It is<br />

approved in the United States and Europe for<br />

certain patients with <strong>MS</strong>. Though not<br />

approved in <strong>Canada</strong> for <strong>MS</strong> (it was never submitted<br />

for approval), it is sometimes prescribed<br />

for worsening cases <strong>of</strong> relapsingremitting<br />

<strong>MS</strong> or to treat active secondary-progressive<br />

<strong>MS</strong>. Researchers are looking into<br />

combining mitoxantrone with Copaxone, in<br />

sequence. “The idea is to see if first suppressing<br />

the inflammatory immune response <strong>of</strong> the<br />

<strong>MS</strong> patient with a short course <strong>of</strong> mitoxantrone<br />

would give Copaxone a better chance<br />

to act,” says Dr. Bar-Or. “Would this be more<br />

effective than just taking Copaxone alone?”<br />

A small study with 27 patients showed that<br />

this combination reduced relapse rate by<br />

90%. Larger studies are in progress, including<br />

a 15-month study, headed by Dr. Tim<br />

Vollmer <strong>of</strong> the Barrow Neurological Institute<br />

in Arizona, in which participants are divided<br />

into two groups: one group taking Copaxone<br />

for 15 months; the other group taking three<br />

doses <strong>of</strong> mitoxantrone instead <strong>of</strong> the usual<br />

12 doses, then Copaxone for the remaining<br />

months. Early results showed the combination<br />

had positive effects on MRI disease<br />

activity. Results from the extension phase <strong>of</strong><br />

the study (24- and 36-month follow-up data)<br />

are expected to be available in 2007.<br />

Mitoxantrone can be toxic to the heart in<br />

high doses so in combination studies it is<br />

used at a lower level, underscoring some <strong>of</strong><br />

the difficulties <strong>of</strong> designing combination studies<br />

– what therapies are you going to combine,<br />

in what dosage and in what sequence?<br />

Minocycline, Statins<br />

Researchers are investigating combining the<br />

injectable <strong>MS</strong> therapies with some <strong>of</strong> the oral<br />

medications currently being studied for use in<br />

<strong>MS</strong>, such as minocycline, an antibiotic used<br />

to treat acne, and statins, which are used to<br />

lower cholesterol levels. Basic research,<br />

research using animal models, and now, different<br />

levels <strong>of</strong> clinical trials suggest these<br />

oral medications may have benefit in the <strong>MS</strong><br />

disease process. As well, minocycline is<br />

inexpensive and not toxic with long-term use.<br />

And, the statins are generally well tolerated.<br />

Dr. Caroline Geenen, a community neurologist<br />

at the Markham-Stouffville Hospital<br />

in Markham, Ontario, relishes the prospect<br />

<strong>of</strong> having more therapeutic strategies to<br />

<strong>of</strong>fer her patients. “We’re very hopeful that<br />

there will be a better drug, perhaps an oral<br />

drug, and definitely a cure. The current<br />

medications have certainly improved the<br />

<strong>MS</strong> <strong>Canada</strong>, Spring 2007, p. 7


quality <strong>of</strong> life <strong>of</strong> patients with relapsingremitting<br />

<strong>MS</strong>, but they’re not cures. They<br />

still don’t keep people, at times, from progressing<br />

their <strong>MS</strong>, so we’re always on the<br />

lookout for better, easier-to-use and less<br />

expensive drugs.”<br />

She cautions, “For us to use combination<br />

therapy, the effectiveness <strong>of</strong> the combination<br />

would have to be significantly better<br />

than a single therapy.”<br />

One reason is cost. Avonex, Betaseron,<br />

Rebif and Copaxone each cost $16,000 -<br />

$17,000 per year. Tysabri rings in at $33,000.<br />

Combine any two and you have doubled or<br />

tripled the current annual costs. With many <strong>of</strong><br />

her patients enrolled in the Ontario government’s<br />

Trillium Drug Program for people with<br />

high prescription drug costs, Dr. Geenen says,<br />

“Either the government or private insurance will<br />

have to be pretty heartily convinced that there<br />

is major benefit to combining drugs over using<br />

single drugs, simply because <strong>of</strong> the cost.”<br />

Another issue is injection. The original four<br />

<strong>MS</strong> treatments are injected at different fre-<br />

<strong>MS</strong> <strong>Canada</strong>, Spring 2007, p. 8<br />

quencies – daily, every other day, three<br />

times a week, weekly – and in different<br />

locations – into the muscle, under the skin.<br />

Doubling injections or taking them one and<br />

a half times as <strong>of</strong>ten may prove difficult for<br />

some patients. Tysabri is given by infusion,<br />

once a month, which means having to go to<br />

an <strong>MS</strong> clinic, hospital or infusion centre, to<br />

receive the medication intravenously.<br />

Then there are the possible side-effects<br />

from combining two or more types <strong>of</strong> medications.<br />

Despite these potential barriers, Dr. Jock<br />

Murray is confident that combination therapy<br />

will bring better treatments for all forms<br />

<strong>of</strong> <strong>MS</strong>. “I believe that effective pharmacotherapy<br />

for <strong>MS</strong> will come from understanding<br />

how to use different medications<br />

in different sequences at different times for<br />

different types <strong>of</strong> <strong>MS</strong>. And it likely won’t be<br />

a magic bullet, where people find one therapy<br />

that suddenly eliminates the disease. It<br />

will be by learning how to use combinations<br />

with different approaches.”


Research in Brief<br />

Moving closer to a cure every day<br />

Tysabri available<br />

on prescription<br />

Health <strong>Canada</strong> approved Tysabri<br />

(natalizumab), the new treatment<br />

for relapsing–remitting <strong>MS</strong>, as a<br />

therapy for people with relapsingremitting<br />

in late September 2006,<br />

and people are beginning to<br />

receive their monthly infusions at<br />

infusion clinics.<br />

The general prescribing indication<br />

for Tysabri is for people with <strong>MS</strong><br />

who have had an inadequate response<br />

to other disease modifying therapies<br />

or are unable to tolerate them.<br />

The base price <strong>of</strong> Tysabri from<br />

Biogen Idec <strong>Canada</strong> is $2,809.18<br />

per vial (the monthly treatment<br />

dose). The annual base price is<br />

$33,710.16. Generally, there is an<br />

additional mark up at the retail level.<br />

At this time, reimbursement for<br />

the cost <strong>of</strong> the treatment is available<br />

only from private health<br />

insurers. None <strong>of</strong> the provincial<br />

governments are, as yet, reimbursing<br />

the cost <strong>of</strong> Tysabri. Most<br />

are waiting for the recommendation<br />

from the Common Drug<br />

Review (CDR) process. CDR is<br />

the joint federal/ provincial/ territorial<br />

process that examines<br />

whether drugs are cost effective<br />

and if they should be covered by<br />

public drug programs.<br />

The <strong>MS</strong> <strong>Society</strong> is closely monitoring<br />

developments with CDR and<br />

provincial governments to determine<br />

the need for future advocacy efforts.<br />

For more details, go to<br />

www.mssociety.ca and enter key<br />

search word “Tysabri”.<br />

<strong>MS</strong> later in life not<br />

necessarily bad<br />

Developing <strong>MS</strong> as an older adult (50<br />

plus years old) does not necessarily<br />

mean more disability, according to<br />

researchers at the University <strong>of</strong><br />

British Columbia. The study by<br />

Helen Tremlett, Ph.D., and Virginia<br />

Devonshire, M.D., October 2006<br />

Neurology, suggest that treatment for<br />

late-onset <strong>MS</strong> should not be different<br />

than the usual treatment approach<br />

once the disease course is determined.<br />

Dr. Tremlett is the recipient <strong>of</strong><br />

an <strong>MS</strong> <strong>Society</strong> <strong>of</strong> <strong>Canada</strong> Dr. Donald<br />

Paty Career Development Award.<br />

While <strong>MS</strong> is usually diagnosed in<br />

people aged 15 to 40 years old, it<br />

can also develop in children and in<br />

adults aged 50 years and older.<br />

Previously, the development <strong>of</strong> <strong>MS</strong><br />

at an older age, especially in men,<br />

was believed to lead to a worse outcome,<br />

which might call for immediately<br />

beginning aggressive therapy.<br />

For more details, go to<br />

www.mssociety.ca and enter key<br />

search words “late-onset <strong>MS</strong>”.<br />

Sex hormone study<br />

underway in US<br />

The first large-scale trial <strong>of</strong> a sex<br />

hormone for the treatment <strong>of</strong> <strong>MS</strong> is<br />

underway at seven research centres<br />

in the United States. One hundred<br />

thirty women newly diagnosed with<br />

relapsing-remitting <strong>MS</strong> will receive<br />

the hormone estriol in combination<br />

with Copaxone or a non-active<br />

placebo for two years.<br />

If successful, this clinical trial will<br />

lay the groundwork for a larger, definitive<br />

trial that could lead to a new<br />

treatment option for women with <strong>MS</strong>.<br />

Its results may also have implications<br />

for women with other autoimmune<br />

diseases, such as rheumatoid arthritis.<br />

In <strong>Canada</strong>, research has found<br />

that <strong>MS</strong> affects women three times<br />

as <strong>of</strong>ten as men. Other researchers<br />

have observed for a number <strong>of</strong> years<br />

that <strong>MS</strong> attacks decline during pregnancy,<br />

leading to the speculation<br />

that estriol, which rises significantly<br />

during pregnancy, may be responsible<br />

for this easing <strong>of</strong> symptoms.<br />

For more details, go to<br />

www.mssociety.ca and enter key<br />

search word “estriol”.<br />

Many with <strong>MS</strong> have abnormal<br />

liver test results<br />

Researchers at the University <strong>of</strong><br />

British Columbia report people<br />

with <strong>MS</strong> who were in the placebo<br />

(non-treated) groups <strong>of</strong> clinical trials<br />

have greater than expected<br />

abnormal liver test results. Lead<br />

investigator Dr. Helen Tremlett<br />

advises people with <strong>MS</strong> and their<br />

physicians need to take extra care<br />

with medications that might affect<br />

the liver and to consider routine liver<br />

testing with some medications.<br />

The study was reported in the<br />

October 2006 Neurology and used data<br />

from the Sylvia Lawry <strong>MS</strong> Research<br />

Centre in Munich, Germany. Dr.<br />

Tremlett is funded by the <strong>MS</strong> <strong>Society</strong><br />

<strong>of</strong> <strong>Canada</strong> through a Dr. Donald Paty<br />

Career Development Award.<br />

The researchers found by year one<br />

nearly 20 per cent <strong>of</strong> the 813 people<br />

had certain abnormal liver test<br />

results. By year two this had<br />

increased to more than 25 per cent.<br />

<strong>MS</strong> <strong>Canada</strong>, Spring 2007, p. 9


continued from previous page<br />

Over the two-year period, there was<br />

an over three-fold increased risk <strong>of</strong> a<br />

person with <strong>MS</strong> having an elevated<br />

liver test result compared to expectations.<br />

However, overall the risk <strong>of</strong><br />

severe liver test abnormalities was<br />

low. Risk factors for having an abnor-<br />

A chat with Dr. Owens<br />

Dr. Trevor Owens<br />

<strong>MS</strong> <strong>Canada</strong> recently talked with Dr.<br />

Trevor Owens, chair <strong>of</strong> the <strong>MS</strong><br />

<strong>Society</strong>’s Biomedical Research<br />

Review Committee. In this role, he is<br />

in the unique position <strong>of</strong> seeing all<br />

research funding proposals submitted<br />

to the <strong>MS</strong> <strong>Society</strong>. .<br />

Part I focuses on the research<br />

application process and Dr. Owens’<br />

own research. The next issue <strong>of</strong> <strong>MS</strong><br />

<strong>Canada</strong> will feature Dr. Owens’ discussion<br />

on stem cells, progressive <strong>MS</strong><br />

and <strong>Canada</strong>’s role in the <strong>MS</strong> world.<br />

Q: How and why did you come to<br />

serve as chair <strong>of</strong> the Biomedical<br />

Research Review Committee?<br />

I enjoyed working with the <strong>MS</strong><br />

<strong>Society</strong> biomedical review committee<br />

(as a member) because the level<br />

<strong>of</strong> involvement is very high. All <strong>of</strong><br />

my colleagues who have served on<br />

it have made the same observation.<br />

<strong>MS</strong> <strong>Canada</strong>, Spring 2007, p. 10<br />

mal liver test were male gender and<br />

higher body mass index.<br />

In an earlier study also funded by<br />

the <strong>MS</strong> <strong>Society</strong> <strong>of</strong> <strong>Canada</strong>, Dr.<br />

Tremlett and Dr. Joël Oger (also <strong>of</strong><br />

the University <strong>of</strong> B.C.) found beta<br />

interferons, prescribed to modify<br />

It is very rewarding for a scientist<br />

when there is a sense <strong>of</strong> commitment<br />

and purpose. Each application<br />

receives a very thorough review. It<br />

sounds a little contradictory to say<br />

that we have to work harder and we<br />

enjoy it, but as scientists we enjoy<br />

reading and discussing science.<br />

Q: How much time would you<br />

estimate that you spend reviewing<br />

applications?<br />

In December, I will receive the full<br />

applications and I will read all <strong>of</strong><br />

them and write reviews on some <strong>of</strong><br />

them. So December through<br />

January I will give each grant a<br />

couple <strong>of</strong> hours on average. Written<br />

reviews take about a day…it all<br />

adds up to a number <strong>of</strong> days work,<br />

which is spread out over a six-week<br />

period. The committee will come<br />

together at the end <strong>of</strong> January with<br />

our full one or two page reviews.<br />

We will each have read all <strong>of</strong> the<br />

applications. We then sit for two<br />

days in committee to deliberate and<br />

make recommendations.<br />

Q: Speaking to some <strong>of</strong> your own<br />

research, you’ve been investigating<br />

how immune cells can cross<br />

the blood-brain-barrier. Can you<br />

tell us a little more about that and<br />

what you hope to achieve with<br />

your research?<br />

the course <strong>of</strong> <strong>MS</strong>, can also increase<br />

the risk <strong>of</strong> an elevated liver tes. The<br />

current study did not include people<br />

on beta interferon therapy.<br />

For more details, go to www.mssociety.ca<br />

and enter key search words<br />

“liver test”.<br />

We know that there is an immune<br />

process that happens in the brain.<br />

We can see the immune cells there.<br />

They are not normally there, so that<br />

looks like something that is wrong<br />

and should be fixed. Some <strong>of</strong> the<br />

current <strong>MS</strong> therapies, that are beneficial,<br />

are directed against that<br />

inflammatory process. My research<br />

is to try and understand what that<br />

inflammatory process is doing in the<br />

brain and how we would stop it, to<br />

the benefit <strong>of</strong> the patient.<br />

On that last point, there is a growing<br />

sense that the immune response<br />

is not just a villain. Our immune<br />

system is able to get into our brain,<br />

likely not only because something<br />

terrible has gone wrong in the brain,<br />

but also because it should be able to<br />

get there, to deal with infections for<br />

instance, or to repair damage. The<br />

mechanisms underlying some <strong>of</strong><br />

these processes are not well understood<br />

yet. So the idea that we<br />

should plain and simple prevent<br />

entry <strong>of</strong> the immune system to the<br />

brain is probably a little simplistic.<br />

We would like to understand under<br />

what circumstances we should<br />

allow it and under what circumstances<br />

we should prevent it.<br />

Join us next issue for part II <strong>of</strong> this<br />

interview.


2005/2006 Review<br />

The <strong>MS</strong> <strong>Society</strong> <strong>of</strong><br />

<strong>Canada</strong> had a banner<br />

year in 2006<br />

with $30 million<br />

in revenue raised<br />

through <strong>MS</strong> <strong>Society</strong><br />

events to<br />

support research and<br />

services for people with <strong>MS</strong>. This<br />

represented an increase <strong>of</strong> 11 per cent<br />

over funds raised in 2005. “The<br />

record results this year are an incredible<br />

testament to the passion and<br />

commitment <strong>of</strong> our volunteers, supporters<br />

and staff,” says Ken Mayhew,<br />

national vice-president <strong>of</strong> fundraising.<br />

The <strong>MS</strong> <strong>Society</strong>’s main events,<br />

including the Super Cities Walk for<br />

<strong>MS</strong> and RONA <strong>MS</strong> Bike Tour, contributed<br />

more than $23 million.<br />

Corporate dinners, golf tournaments<br />

and other community fundraisers<br />

brought in $6.9 million nationwide.<br />

For more financial highlights,<br />

please see our 2005/2006 Annual<br />

Report online at www.mssociety.ca<br />

under About Us. You can also call<br />

1-866-922-6065, ext 2217 to<br />

request a printed copy.<br />

STATEMENT OF REVENUE AND EXPENDITURE<br />

For the year ended August 31, 2006 (in thousands <strong>of</strong> dollars) 2006 2005<br />

$ $<br />

Revenue<br />

Donations and special fundraising projects –<br />

net <strong>of</strong> related expenses 25,459 22,204<br />

Grants 2,415 2,26<br />

Allocations from United Way 1,205 1,000<br />

Investment income 904 1,01<br />

Memberships 90 96<br />

30,073 26,581<br />

Expenditure<br />

Program Services<br />

Research 9,004 6,604<br />

<strong>MS</strong> Clinics 908 904<br />

Client services 9,794 9,285<br />

Public education 2,501 2,210<br />

Chapter development 1,623 1,406<br />

Government relations 978 956<br />

24,808 21,365<br />

Support services<br />

Administration 3,214 3,253<br />

Fundraising 1,479 1,413<br />

4,693 4,666<br />

29,501 26,031<br />

Excess <strong>of</strong> revenue over expenditure for the year 572 550<br />

This issue <strong>of</strong> <strong>MS</strong> <strong>Canada</strong> is supported through an<br />

unrestricted eductional grant from Teva Neuroscience<br />

and Shared Solutions ®<br />

<strong>MS</strong> <strong>Canada</strong>, Spring 2007, p. 11


New publications<br />

for youth<br />

We are very pleased to introduce two supportive<br />

publications for children and<br />

youth with parents who have <strong>MS</strong>. Our<br />

thanks to RBC Foundation and J.P.<br />

Bickell Foundation for their support <strong>of</strong><br />

Keep S’Myelin and to TD Bank Financial<br />

Group for Keep Your Balance. “It can be<br />

easy to overlook the impact <strong>of</strong> a parent's<br />

multiple sclerosis on a child," says<br />

Stephen Voisin, Executive Director with<br />

RBC Foundation. "Keep S'Myelin is a<br />

valuable resource that will help them<br />

understand the changes in their family<br />

lives because <strong>of</strong> their parent's <strong>MS</strong>.<br />

Information brings comfort, and RBC<br />

Foundation is proud to support this publication<br />

as it brings comfort to those children<br />

and families who need it most.”<br />

Your subscription<br />

to <strong>MS</strong> <strong>Canada</strong><br />

To update your mailing<br />

address or subscription<br />

preferences, please contact<br />

your division <strong>of</strong>fice.<br />

Division contact information<br />

can be found at:<br />

www.mssociety.ca,<br />

or you can call<br />

1-800-268-7582<br />

or email:<br />

info@mssociety.ca<br />

<strong>MS</strong> <strong>Canada</strong>, Spring 2007, p. 12<br />

RETURN UNDELIVERABLE<br />

CANADIAN ADDRESSES TO:<br />

<strong>Multiple</strong> <strong>Sclerosis</strong> <strong>Society</strong> <strong>of</strong> <strong>Canada</strong><br />

700 – 175 Bloor St. E.<br />

Toronto, ON M4W 3R8<br />

Publications<br />

Mail Agreement<br />

# 40063383

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