MS 109236 Newsletter ENG - Multiple Sclerosis Society of Canada
MS 109236 Newsletter ENG - Multiple Sclerosis Society of Canada
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 />
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