fall-winter 2014 · finding a cure for multiple sclerosis and enabling people affected by ms to...
TRANSCRIPT
Fall-Winter 2014
FEATURE STORY
The Ripple Effect:
MS as a family disease
by Cheryl Hickey
TAKING ACTION ON MSAccess to
treatments
LIVING WELLMindfulness
meditation
for MS
FROM T TO BUnderstanding
immune cells
in MS
O U R M I S S I O N : To be a leader in finding a cure for multiple sclerosis and enabling people affected by MS to enhance their quality of life.
MS Canada, Fall/Winter 2014
Multiple Sclerosis Society of CanadaSuite 500, 250 Dundas St W, Toronto, ON M5T 2Z51-866-922-6065 F: [email protected] mssociety.ca/mscanadaCharitable registration no. 10774 6174 RR0001
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President and chief executive officer: Yves SavoieEditor-in-chief: Tiffany Regaudie
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FSC FPO
Guest contributor:
Cheryl Hickey
Born in Shallow Lake, ON, Cheryl Hickey
graduated from London’s Fanshawe College with a broadcast journalism
degree and has been the host of Entertainment Tonight Canada since the show premiered in 2005. Cheryl is married
with two children, Jaxson and Nyla.
Fall-Winter 2014
FE ATURE
The Ripple Effect:
MS as a family disease
by Cheryl Hickey
4
informRESE ARCH
From T to B: Understanding immune cells in MS
7LIVING WELL
Mindfulness meditation for MS
9
relateMY MS JOURNEY
Reframing a diagnosis: What can be learned from MS
by Nancy Chamberlayne, M.Ed
11PR ACTICAL MAT TERS
Maintenance and safety: Wheelchairs and scooters
13
actMUCK MS CANADA
Fighting dirty for all the right reasons
14
STUDENTSHIP AWARDS
Backing the future: The Lawrason Foundation
15TAKING ACTION ON MS
Access to treatments: From Health Canada approval to Canadians with MS
16
Message from Yves
19
BRITISH COLUMBIA EDITION
MS CANADA Fall-Winter 20144
The Ripple EffectMS as a family diseaseBY CHERYL HICKE Y, host, Entertainment Tonight Canada
I feel like I don’t have the right to be mad
but I am pissed.
I just got off the phone with my mom, who
finished the call with, “Night, night. See you in
the morning, surely will. Dubbers, dubbers, k, k.”
It may sound odd to the outside world, but we’ve
been saying this to each other since I could talk.
They are words that calm us both. But tonight
our call was about her pain and frustration.
It’s been almost four weeks since she lost
most of the feeling in her left leg. The bottom
half of her core is numb, and the pain is moving
into her right leg. This agonizing pain owns her
every movement. We’ve been waiting for an
MRI for months, and we’re not sure when we’ll
get one.
My mom doesn’t have a family doctor;
she can’t secure one where she lives. When
she’s examined at a family teaching unit, it’s
by a dozen resident doctors. They’ve just
diagnosed her with a back issue. In their words,
“It’s not an emergency, so just hold on.”
My mom is — was — the most energetic,
goofy, fun-loving lady you’d ever meet.
She would jump in the lake at night, just
because she could. On cold, snowy evenings
in Owen Sound, ON, she would dress up in
a full one-piece snowsuit and dance. Name
any sport, summer or winter, and she was fully
participating alongside us. And on long road
trips, nothing broke up the silence like her car
dance moves, which still make me smile when
I remember them.
We did everything we could as a family to get answers. My mom’s MS
progressed quickly. Not only was walking difficult, but a whole suite of new
symptoms appeared. I was terrified.
5
In her early 40s, my mom started getting a
lot of headaches. She had dental work because
it was thought to be needed when it wasn’t.
Medication after medication was prescribed
for the headaches. The other symptoms — the
back pain, the throbbing jaw — were thought
to be just in her head. The dentist pulled teeth
to try to fix the problem. Surprise, surprise —
the pain remained, but the teeth didn’t.
Being young at the time, I didn’t think
much of it — but knowing what I know now,
she was amazing at hiding the really bad days.
She eventually gave up trying to get answers
about the cause of the strange tingling, un-
steady walking and slippery hands. That is,
until my wedding shower in August 2008.
It was the most amazing day. My mom,
sister and friends had planned an incredible
shower. The day went off without a hitch, until
the drive home. My mom said her baby toe
was numb and in pain. During the 60-minute
drive, the pain worsened and travelled up her
leg. My family’s life changed in an instant.
We did everything we could as a family to
get answers. After that day, her MS progressed
quickly. Not only was walking difficult, but
a whole suite of new symptoms appeared.
I was terrified. The process of diagnosis felt like
a game of darts. At first it was Lyme disease,
then transverse myelitis, then maybe MS.
One night, our family was so scared,
angry and tired of not being heard that we
rushed my mom to a hospital. She was on
so many medications that she started to
hallucinate — according to one doctor, her
body was shutting down. My dad, once a
pillar of strength for our family, was brought
to his knees watching his wife deteriorate.
Lori and Cheryl Hickey before Lori’s
diagnosis of MS.
MS CANADA Fall-Winter 20146
After months of anxiety, anguish and frustra-
tion, one doctor out of the many we had seen
confirmed that my mother had MS. I was pissed.
Leading up to my wedding, my heart
was filled with excitement that I was marrying
the most amazing man, but it also felt broken
in a million pieces. A day away from marrying
my soul mate, my mother was in crippling pain
and still trying to find the right medication.
My dad was reluctant to leave her side, even
for our father-daughter dance. Now, when
I flip through wedding photos, I can’t look at
photos of my mom because it seems like
she wasn’t really there. Her eyes are dilated,
her smile is fake and her expression is vacant.
It’s obvious how much she was hurting inside.
A year later, I was pregnant with our
first child. My most vivid memory of my mom
during my pregnancy is her head resting on
But my mom is a champion. Unlike me, she’s not pissed — she’s now reached acceptance.
my six-month pregnant belly while she is
getting a spinal tap. Three years after that, baby
number two arrived. My mom is so unsteady,
she couldn’t pick up her own granddaughter
from her crib. MS has robbed us of those
irreplaceable moments we both dreamed about.
I’m pissed.
But my mom is a champion. Unlike me,
she’s not pissed — she’s now reached accep-
tance. She always says, “I don’t have anything to
complain about. Others suffer far more than me.”
Recently, we’ve seen a couple of doctors who
have offered her glimmers of hope and promise
that we carry with us to this day.
Over the last decade, I’ve shared with my
parents every article or story I have ever written —
but I hope she never reads this, because I like to
think I have hidden my fears and anger from her.
If she reads this, I fear . . . she will be pissed.
Early diagnosis of multiple sclerosis is vital to ensuring Canadian families aren’t left in the dark about the often confusing symptoms of MS.
In 2013, the MS Society of Canada approved funding for 18 studies focused on uncovering answers about the first signs of MS, risk factors for developing
MS and the role of genetics in MS.
To read more about these studies and other research funded by the MS Society, visit mssociety.ca/researchsummaries
7
From T to BUnderstanding immune cells in MS
in relapses. This fresh evidence challenges the
conventional knowledge that MS is an exclusively
T cell-driven disease.
Investing in a new way to examine MSLast year, the MS Society of Canada and
MS Scientific Research Foundation funded a
$3.6 million dollar multi-centre, collaborative
study to build on current knowledge about B cells.
Led by world-leading MS experts Dr. Amit Bar-Or
from McGill University, Dr. Jennifer Gommerman
from University of Toronto and Dr. Alexandre
Prat from Université de Montréal, the study aims
to understand how different types of B cells
influence the development of MS, and their role
in progressive MS.
More knowledge about B cells could lead to
treatments for MS, especially progressive MS for
which there are no treatments to date. Here is a
status update on current knowledge about B cells vs.
the answers we need about these immune culprits.
Over the past decade, researchers have
made substantial progress in understanding
how the immune system misbehaves in
multiple sclerosis. Research has uncovered parts
of the immune system that can be controlled by
therapies to improve health, most notably a type
of white blood cell known as the T cell. Recently,
however, researchers have broken new ground in
identifying other immune culprits in MS — which
has led to the study of the B cell.
T cells are known to protect the body
from harmful bacteria and viruses, but in MS
they erroneously attack myelin. While evidence
confirms T cells’ important role in MS, therapies
targeting T cells have been only partially effective,
and sometimes result in dangerous side effects.
Recent clinical trials, however, have revealed
surprising results: when B cells, another type
of white blood cell, are specifically targeted
and removed from the immune system, people
living with MS experience significant reduction
Current knowledge Gaps in knowledge
Therapies that selectively deplete B cells lead to dramatic decreases in new MS relapses
Identification of “good” B cells vs. “bad” B cells is needed to develop therapies that target the correct cells
B cells in people with MS can abnormally produce molecules that promote inflammation
The method by which B cells enter the central nervous system to cause damage to myelin and surrounding tissues
B cells in people with MS can trigger abnormal T cell responses
Clarification on the role of B cells in progressive MS
B cells are sometimes found in inflamed brain tissue of people with progressive MS, which suggests they may contribute to disease progres- sion and subsequent worsening of disability
The details behind B cell and T cell interaction, and how this interaction influences MS
MS CANADA Fall-Winter 20148
From trainee to independent investigator: Dr. Craig Moore
Dr. Craig Moore, who studied under the mentor-
ship of Dr. Amit Bar-Or, is one of several young
researchers who are adding their own expertise
to the collaborative study on B cells.
Dr. Moore, who recently assumed a faculty
position at Memorial University in St. John’s, NL
and opened the first neuroimmunology laboratory
in the province, has gained valuable knowledge
and experience studying the clinical aspects of MS.
Dr. Moore’s involvement with the B cell study
is based on his expertise in understanding how
brain cells and immune cells interact in MS.
Specifically, Dr. Moore has begun to research
how B cells influence the behaviour of brain cells
and vice versa. As a collaborator on the B cell
study, Dr. Moore is helping to investigate those
B cell subtypes that are harmful, and how they
can be controlled to reduce inflammation and
enable recovery.
Early in his career, Dr. Moore’s interest in
MS was strengthened through the MS Society’s
endMS Research and Training Network and the
Scholar Program for Researchers IN Training,
through which he developed lifelong skills in the
lab and in areas like collaboration, networking
and professional development.
“Through SPRINT, I was able to form valuable
relationships with researchers across Canada, many
with whom I exchange ideas today,” Dr. Moore says.
“The network enforced the importance of collab-
oration, which is very helpful when working with
colleagues across Canada on a multi-centre study.”
Dr. Moore says meeting people living with
MS and their families through SPRINT has been
a great reminder of the potential impact of his
work as a researcher. “There’s an unmet need
right now for people with progressive MS,”
he says. “The development of therapies that
can foster myelin repair is critical to treating
this relentless, disabling form of the condition.”
To stay up to date on the study of B cells and more, visit mssociety.ca/research
There’s an unmet need right now for people with progressive
MS. The development of therapies that can foster myelin repair is
critical to treating this relentless, disabling form of the condition.
9
Living WellMindfulness meditation for MS
Mindfulness is the practice of maintaining moment-to-
moment awareness of our experiences, thoughts and
feelings. Through meditation, we may train ourselves to
be mindful by focusing on our breathing and noting our
thoughts without judgment.
Mindfulness facilitates a full sensation of the present and
a diminished tendency to dwell on the past or worry about
the future. While mindfulness has roots in Buddhism, the
practice has grown in North America in recent years as a
secular form of meditation.
For people living with multiple sclerosis, mindfulness
meditation may be helpful in coping with an uncertain
future that often accompanies a diagnosis of MS. If you’re
interested in trying mindfulness as a way to improve quality
of life, here are some tips to get you started. Re
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Practising mindfulness: How to start
STEP #3BRE ATHE NATUR ALLY. Mindfulness medi- tation does not require an alteration of the breath. Let your breath flow naturally, and use this natural breath as an object of focus during your practice. Try to become deeply aware of each inhalation and exhalation as it is happening.
STEP #1G E T COMFORTABLE . As mindfulness meditation requires conscious awareness, it is recommended that you practice in an upright, seated position with a soft, forward gaze. If this is not comfortable, however, you may also practice lying down and/or with your eyes closed.
STEP #2S TART SLOW. In the beginning, mindfulness meditation may feel mentally taxing, especially if you are stressed and preoccupied. Reserve no more than 10 minutes for your practice, either in the morning or before bedtime.
STEP #5KEEP PR AC TISING . Mindfulness is a skill that requires practice. If you are unable to sustain a focus on your breath for an extended period of time, do not think of the practice as a “failure”; the practice is yours alone, and you are not required to achieve full awareness in any set amount of time.
STEP #4FORG IVE YOUR MIND. It is natural for your mind to wander away from the focus on your breath. When this happens, simply acknowledge the thought and gently return your awareness to your breathing.
MS CANADA Fall-Winter 201410
For more information on meditation classes offered in your region, call your local MS Society chapter at 1-800-268-7582 (programs may vary according to location).
What does research say about MS and mindfulness?Anecdotal evidence and a recent study 1 suggest
tangible benefits from mindfulness meditation,
such as anxiety, pain and fatigue management;
however, more research is needed to explore
the benefits of the practice for people with
MS. The most recent comprehensive review
of complementary and alternative medicine
in multiple sclerosis 2 has determined there
is currently insufficient evidence to support
mindfulness-based training as a therapy for
MS one way or another.
Researchers agree, however, that medita-
tion is a relatively safe form of complementary
therapy for people living with MS.
1 Simpson et al. (2014). Mindfulness based interventions in
multiple sclerosis — a systematic review. BMC Neurology,
14, 15. Retrieved from http://www.biomedcentral.com/
1471-2377/14/15
2 Vijayshree Yadav, Christopher Bever, Jr, James Bowen, et al.
(2014). Summary of evidence-based guideline: Complementary
and alternative medicine in multiple sclerosis. Neurology, 82,
1083-1092. Retrieved from http://www.neurology.org/content/
82/12/1083.full.html
Pain management and mindfulness: Melinda“When I was first diagnosed with multiple
sclerosis in 1994, I had been experiencing
a lot of electric-like pain in my arms and legs.
The pain was constant and left me feeling
exhausted and anxious. On top of my MS,
I also have a heart condition that has caused
four heart attacks over 15 years.
As my MS and my heart condition per-
sisted, I felt constantly afraid — afraid to leave
my house, afraid to be far away from a phone,
afraid to live my life. Finally, four years ago,
I accompanied a friend to a yoga class that
incorporated mindfulness meditation into
the practice. Soon after I began attending
a class on mindfulness, and I learned more
than I imagined.
Being mindful means being aware of
your thoughts and actions without judgment.
I use mindfulness to cope with my pain by
learning to acknowledge that the pain is present
without letting it distract me from the task at
hand. I’ll do the dishes, for instance, and focus
on picking up a dish, feeling the water on my
hands, etc. — I’ll fully insert myself into the
present moment rather than into my pain.
Mindfulness meditation is not easy work,
but it has taught me not to fear
an unknown future with MS.”
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My MS JourneyReframing a diagnosis: What can be learned from MSBY NANCY CHA MBERL AYNE , M . ED.
and other issues; and writing for disability
publications on topics like hiking with a
scooter and bladder control. I have chosen
to learn from MS and teach others what
I have learned, rather than let the disease
shut me down.
During a self-help group discussion,
I asked other group members if they had
learned anything from their experience with
MS. They too found it difficult to reframe the
disease as a learning opportunity, but they
revealed that their interpersonal skills had
improved, their expectations had changed and
they had discovered talents they didn’t know
they possessed. Members would then go on
to teach me even more about what can be
learned from MS through their own journeys
with the disease.
Reframing a diagnosis of multiple sclerosis as an
opportunity for learning is a challenging task.
When I was first diagnosed, I struggled to think
I could learn anything from a disease that robbed
me of many physical abilities and my profession
as a counsellor and teacher to adolescents.
Soon after my diagnosis, I learned to
transfer my professional skills to volunteer
activities to achieve fulfillment. I knew I needed
a purpose, to contribute and feel stimulated, to
always feel like I’m learning. Volunteering allows
me to accomplish all these things, but at a pace
that lets me manage my MS.
For the past 22 years in British Columbia,
I’ve been facilitating MS self-help groups that
provide support and education; giving presen-
tations about MS, self-worth, bowel management
I knew I needed a purpose, to contribute and feel stimulated, to always feel like
I’m learning. Volunteering allows me to accomplish all these things, but at a pace that lets me manage my MS.
MS CANADA Fall-Winter 201412
Personal growthPersonal growth can come in many forms. It may
mean becoming more assertive, especially when
advocating for more effective healthcare. Since
being diagnosed with MS, many group members
gained confidence in telling family, friends and
even strangers when they don’t feel heard, when
they need help and when they disagree.
When people discover that others struggle
with the physical and emotional repercussions of
MS, they realize they are not alone. They learn to
walk in each other’s shoes and oftentimes become
more empathetic and thoughtful of others.
Adapting expectations With loss often comes a decision to let go — let go
of old ways of doing things and old expectations.
With MS, physical abilities are often compromised,
but people can learn to adapt to a cane, walker,
wheelchair or scooter to remain active. Adapting
to new situations is a learned skill that requires
acceptance, flexibility and creativity. Learning
to let go has taught me to do things differently,
whether it’s driving with hand controls, exercising
in a chair or hiking with a walker or scooter.
Some of us with MS can’t move quickly,
and it can take a long time to do a simple task.
Learning to slow down and accept that things take
longer is not easy, but patience pays off with less
emotional angst. If it takes longer to get dressed,
cook a meal or leave the house, why fight it? Life
can be more peaceful when we are not rushing.
Discovering hidden talentsMS can also enable the discovery of hidden
talents, especially in the fine arts. One member
of my self-help group started painting in the
hopes it would take her mind off the pain. While
discovering she could indeed “paint through the
pain”, she also discovered that she was skilled
with a paintbrush. Painting is a favourite activity
among several members of our self-help group.
For therapeutic reasons, I wrote about living
with MS. To my surprise, the articles were pub-
lished in publications for people with disabilities.
It can be hard to believe at first, but a
disease that takes so much away can also teach.
After the initial shock of diagnosis, so many of
us have learned new skills and gained new life
experiences because we have been open, aware
and proactive in pursuing them.
We are not victims — we are the scholars
of our lives.
I want to thank all members of the South and Central Vancouver Island Chapter’s Living Well with MS self-help group for their thoughtful and insightful contributions to this article.
Members of the South and Central Vancouver Island Chapter self-help group discovered new skills after they were diagnosed with MS.
1 3
Practical MattersMaintenance and safety: Wheelchairs and scooters
For more practical tips on living well with MS, visit msanswers.ca
As neededWHEELCHAIR FOOTPL ATESIf footplates have loosened or shifted in position from use, follow the equipment manual to reposition to the appropriate placement.
BAT TERIES (P OWER CHAIRS AND SCOOTERS)Follow the battery maintenance schedule according to the equipment manual. It is important to know how to properly charge your batteries and how often you must charge them.
MOIS TURE , SPILL S OR WE ATHERKeep your equipment dry and clean. Moisture can cause rust and bacteria that could potentially compromise your safety or health.
Regular maintenance of mobility aids and other devices used
on a daily basis will help prolong the life of the equipment
and prevent potential safety issues and costly repairs.
Annual servicing of equipment by a qualified technician is
recommended for wheelchairs and scooters, but monthly
and weekly maintenance is also important for comfort and
safety. Here is a breakdown of what you should be checking
and when.
WeeklyTIRESCheck your tire air pressure using an air pressure gauge. Inspect tire treads for any damage or wear and tear.
FR A MEEnsure all hardware (nuts, bolts, wheel bearings, etc.) are tight. Wipe down the frame using a damp cloth. Note: Contact a technician if you find any dents or cracks, as these can weaken the frame and cause a safety issue.
WHEELCHAIR BR AKESUsing an Allen key, screwdriver or wrench, check that brakes are tight and holding wheels in place. Note: Checking brakes is especially important after the tire air pressure has been adjusted.
MonthlyWHEEL SClean wheels to get rid of any buildup of dust, dirt, pet hair and other debris. Wheels should spin freely. Note: Manual wheelchair wheels can be removed for cleaning.
PUSHRIMS (M ANUAL WHEELCHAIR)File or sand any rough edges as necessary. Note: For any other damage to the pushrim, a technician should be consulted.
MS CANADA Fall-Winter 20141 4
While MS has changed Karine’s life, she
laughs at the idea that she slowed down. At
first she began to take part in exercise programs
offered by the MS Society. When she started
breaking personal fitness goals and her disease
didn’t progress the way she had feared it might,
she kept challenging herself to go further and
find ways to give back. She participated in the
MS Walk with her family and was a spokesperson
on behalf of the MS Society, all the while hunting
for events for her thrill-seeking friends.
“When I first heard about Muck MS Canada,
I thought it looked exciting,” Karine says. “I liked
the physical challenge, and it seemed like I would
fit in with the crowd.”
The inaugural event in Quebec City raised
more than $160,000 and generated a tidal wave
of buzz, both online and offline.
As someone who benefitted directly from
the programs offered by her local MS Society
chapter, Karine says she would like to see
proceeds invested in communities. At the same
time, Muck MS Canada will also help finance the
world’s leading MS researchers
to find the cause, better treat-
ments and a cure for MS —
which would allow more
Canadians living with MS
to enjoy life to the same
degree that Karine does.
It was so fun to see all these people really dirty, even the guys dressed like
ballerinas. The energy was great.
For more information, visit MuckMS.ca.
For Karine, rappelling down the wall of a hotel
is a great time. So when she took part in the in-
augural Totale Bouette (or Muck MS Canada, as it
is called this year in English) event in Quebec City
in 2013, she was thrilled to be joining hundreds
of others running through the muddy forest with
friends. She loved the costumes, the obstacles and
the chance to act like a kid again — even though
by the end she was too dirty for her daughter to
want a hug.
When you ask, Karine’s favourite part of
Muck MS Canada is the challenge. “If you commit,
you have to finish the course,” she says. “It was so
fun to see all these people really dirty, even the
guys dressed like ballerinas. The energy was great.”
Before she was diagnosed with multiple
sclerosis at 26 while pregnant with her daughter,
Marilou, Karine got most of her exercise from
her job as a nurse. Now 34, she is an avid cyclist,
runner and ski patroller. Focusing on her health,
she says, is a major way to manage her disease.
Muck MS Canada Fighting dirty for all the right reasons
CHILLIWACK, BCOCTOBER 4
5 KM12 OBSTACLESCONQUERED.
SEE YOU FOR 2015 MUCK MS CANADA!
1 5
Studentship Awards Backing the future: The Lawrason Foundation
One afternoon Jennifer Ahn stared at her
inbox and couldn’t stop smiling. Her research
had been chosen from numerous applicants
as an award recipient of the MS Society of
Canada’s Doctoral Studentship competition.
Across town, members of The Lawrason
Foundation were also smiling, knowing that the
award established in their name was about to
make a difference for Canadians living with MS.
Jennifer works under the mentorship of
Dr. Shannon Dunn at the University of Toronto,
where she studies how obesity increases the
risk of MS. The impacts of obesity on cardio-
vascular and metabolic diseases are well
documented, but there is a gap in knowledge
about the impact of obesity on autoimmune
diseases. Jennifer hopes to change this.
“Right now we can safely say that if some-
one has a family history of MS, they should
watch their weight, live a healthy lifestyle and
be mindful of their diet,” Jennifer says. “But
if we are able to find a molecule that explains
this, perhaps we can develop a preventative
or early treatment.”
When Jennifer began her work, funding
was difficult to obtain. Though the Canadian
MS research community was supportive of her
studies, she could feel the tightening of the
faucet with funding. The Lawrason Foundation
MS Society of Canada Doctoral Studentship
award allowed her to jumpstart her research
and focus on the science.
“Without this award, I wouldn’t be able
to do the experiments I need to get answers,”
Jennifer says. “It allows me to add new compo-
nents to my process so that I can get results
that much faster. I’m hoping that, from the
insights of my research, we can find treatments
that address an early stage of MS.”
Arthur Angus, lawyer and president of
the Foundation, says it was important to know
that all of the money is going to Canadian
MS research. As someone with a close family
connection to MS, he emphasized that The
Lawrason Foundation sees Canadian MS
research as a priority — it is the main driver
behind their funding of Jennifer’s work.
To find out how you can support the next generation of MS researchers through the MS Society’s Studentship Awards program, please contact Lee Nichols at [email protected] or 1-800-268-7582 x3131.
MS CANADA Fall-Winter 201416
Taking Action on MSAccess to treatments: From Health Canada approval to Canadians with MS
When new treatments for multiple sclerosis
are approved by Health Canada as safe and
effective, hope for better quality of life is
generated for the 100,000 Canadians who
live with MS.
Access to financial reimbursement for an ap-
proved therapy, however, can take years — which
can seem like a lifetime when the symptoms of
MS are preventing you from living well.
According to the Listening to People
Affected by MS survey, one in three people living
with multiple sclerosis do not have access to
treatments, programs and services — whether
they can pay for them or not. In response to
the gaps and barriers identified in the survey,
the MS Society of Canada is asking Canada’s
governments to take action on MS.
The Canadian healthcare system is
currently a patchwork of provincial healthcare
systems that each has its own requirements
for granting residents with access to drugs
that have been approved by Health Canada.
We are pressing governments to establish a
pan-Canadian drug strategy, which would
set nationwide access standards for therapies
for MS. Our ultimate goal is to provide all
Canadians with MS with equitable and timely
access to public reimbursement for all
approved treatments.
If you’ve ever been confused about the
process for approving treatments in Canada,
you’re not alone. The following is a snapshot
of the journey a treatment may take from
Health Canada approval into the hands of a
person living with MS.
To find out how you can help advocate for a pan-Canadian drug strategy, visit mssociety.ca/advocacy
I believe an important step forward would be more education about what a person with MS experi ences while
waiting for treatment. It could go a long way to personalizing the process and getting people the help they need.
— DENNIS, DIAGNOSED WITH MS IN 2000
Health Canada assesses scientific evidence about a treatment’s safety, effectiveness and the quality of its manufacturing process.
Common Drug Review’s expert advisory committee assesses a treatment’s cost relative to its effectiveness as compared to other available treatment options, as well as taking into account input from patient groups. The CDR then provides its recommendations to participating federal, provincial and territorial healthcare plans.
Pan-Canadian Pricing Alliance handles pricing negotiations between the treatment manufacturer and participating provinces and territories. One province or territory assumes the lead in negotiations, which work toward a signed letter of intent on pricing and distribution between the manufacturer and the lead province or territory. Each province and territory then makes the final decision on funding the drug on its own drug plan, either using the letter of intent or entering into a jurisdiction-specific product listing agreement with the manufacturer.
Provincial/territorial formulary is each region’s list of treatments they will fund through their own healthcare plans — residents of each region who access public drug plans have access to reimbursement for the treatments on this list.
The MS Society collects and provides input from people living with MS about the potential impact of treatment on quality of life to inform CDR recommendations.We also work to ensure each step is expedited as quickly as possible, advocating for timely access to treatments for people living with MS.
Pan-Canadian Pricing Alliance
bit.ly/1oOFMFx
Common Drug Review(at CADTH)
cadth.ca
Health Canadahc-sc.gc.ca
Provincial/territorial formulary
< 2 YE ARS < 1 YE AR < 2 YE ARS
MS CANADA Fall-Winter 20141 8
Helping Canadians gain access to treatments: Dennis“I’m a veteran of the Canadian Armed Forces
who retired because of my multiple sclerosis.
I was very lucky when I was diagnosed with
MS, because I gained access to the treatment I
needed within six months of my first symptoms.
This isn’t always the case, especially where I live
in Saskatchewan where we don’t have access
to a neurologist who specializes in MS.
In other provinces, people who are
diagnosed by MS neurologists as having
clinically isolated syndrome — a single episode
of MS symptoms before a second attack —
may be prescribed disease-modifying therapies,
whereas in Saskatchewan you need docu-
mented proof of two MS relapses within two
years to gain access to treatment.
To fill a gap in MS-specific advocacy in
the Saskatchewan medical community, I run
a healthcare centre for people living with
MS that focuses on peer support and system
navigation. I inform people about the disease-
modifying therapies available to them so they
decide which treatment is right for them. If a
person chooses a therapy, I help a neurologist
with an application to the Saskatchewan
MS Drug Advisory panel, who then decides
whether or not to cover the treatment.
I believe an important step forward in this
process would be more education for the panel
about what a person with MS experiences while
waiting for treatment. It could go a long way to
personalizing the process and getting people
the help they need.”
For more information on advocacy in Quebec, visit mssociety.ca/qcadvocacy
Focus on Quebec:
Institut national d’excellence en
santé et en services sociaux
In Quebec, the Institut national
d’excellence en santé et en services
sociaux steps in after Health Canada
approval to assess a treatment’s
cost and effectiveness, like the
Common Drug Review does for other
Canadian provinces and territories.
The MS Society provides INESSS with
feedback on treatment experiences
from people living with MS.
The province of Quebec considers
INESSS recommendations when
deciding which treatments to include
on their provincial formulary.
A key difference in the treatment
pricing process in Quebec is that the
manufacturer’s price that is presented
to committees is made public.
The public nature of pricing in
Quebec may set standards for pricing
in other countries; as a result, prices
may be presented as high. There is
also less room for negotiation in
Quebec; if a price for treatment is
presented and rejected by INESSS,
the decision may need to be appealed
and the process begun from scratch.
This process may delay access to
treatment for Quebeckers living
with MS.
19
Message from YvesNew knowledge about the global incidence
of multiple sclerosis reveals that Canada has
the highest prevalence of MS in the world,
with 100,000 Canadians living with the disease.
As we work alongside people affected by MS,
researchers and governments to ensure that
Canada remains a world leader in ending
this devastating disease, we must remember
that MS also affects caregivers, families and
communities.
Cheryl Hickey, featured on the cover of
this issue of MS Canada, reminds us that MS
can trigger confusion and a sense of upheaval
within Canadian families. When Cheryl’s
mother, Lori, was diagnosed with MS in 2008,
the Hickey family were thrust into unknown
territory as Cheryl’s father, John, became
a primary caregiver at a late stage in his life.
Cheryl’s family faced many questions about
Lori’s treatment and prognosis, and their
story highlights the importance of support
for caregivers to those with MS.
As we invest in novel research that breaks
the boundaries of our knowledge about MS,
we are forging a new understanding of the
cellular mechanisms responsible for nerve
damage. A collaborative study funded by the
Multiple Sclerosis Scientific Research Foundation
will tell us more about the role of B cells in the
development of MS. While successful research
in T cells and other immune cells in MS has
generated 10 disease-modifying therapies for
relapsing-remitting MS, the novel study of
B cells is a new direction in research that could
unleash an entirely new generation of vital treat-
ment options for people with progressive MS.
As established researchers work side by side
with researchers who are early in their scientific
and clinical careers, their collaboration repre-
sents an essential investment in a better future
for people experiencing progressive disability
as a result of MS.
As Canadians with MS continue to face
barriers to access to treatments that have been
proven to improve quality of life, we are working
with the Health Charities Coalition of Canada
to affect systemic change for people with
disabilities and chronic illnesses. As a united
front, the coalition is pressing governments
to ensure Canadians have equitable access to
quality health care to help meet their chronic
care needs and to improve their quality of life
based on the best possible health outcomes
rather than the ability to pay.
A note of recognition and gratitude is
extended to Novartis for their support of this
edition of MS Canada through an unrestricted
educational grant. As we take action to provide
Canadians affected by MS with the information
they need to live well, please share this issue
of MS Canada with those in your community,
so that we continue to spread awareness of
the many issues people with MS still face today.
Visit mssociety.ca/mscanada to share the issue with your community today.
CANADA HAS THE HIGHEST RATE OF MS IN THE WORLD.
Thanks to the support of dedicated Canadians, the MS Society
of Canada is a leader in building a world free of MS. With your
support, we can continue to push the boundaries of what’s
possible in research, care and knowledge about the disease.
With your gift we can continue to make a profound difference
in the lives of Canadians affected by MS.
Give today to end MS for all Canadians. mssociety.ca/give