2013 North American Education Program
Making Treatment & Lifestyle Decisions:
Thinking About Benefits & Risks
Presenter’s Packet
&
Frequently Asked Questions
August, 2013
Introduction
Welcome to the 2013 North American Education Program (NAEP) — Making
Treatment & Lifestyle Decisions: Thinking About Benefits & Risks. We appreciate
your taking the time to be a part of this important educational opportunity. To
help with any questions that may arise, a list of frequently asked questions (FAQs)
related to the subjects discussed in the DVD and program booklet was developed.
In addition, discussion questions are provided to facilitate conversation with your
group after watching the DVD.
These questions are not all-inclusive. If asked a question that is outside the scope
of the presentation or that you or the presenter does not have an answer to, you
can refer the person to an MS Navigator at 1-800-344-4867 or her or his
healthcare team. If you’re considering bringing in a speaker, we encourage you to
invite a neurologist, MS certified nurse or social worker knowledgeable about MS.
We want to thank Bayer HealthCare; EMD Serono; Genentech; Genzyme, a Sanofi
company; Novartis; Teva Neuroscience and Questcor Pharmaceuticals, Inc. for
providing generous educational grants to make this program possible.
Program Background
The National MS Society, in partnership with the MS Society of Canada, is pleased
to bring you Making Treatment & Lifestyle Decisions: Thinking About Benefits &
Risks. Our program this year focuses on the factors that influence people with MS,
as well as their physicians and family members, as they consider their treatment
and lifestyle options.
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We are pleased to have the following doctors and researchers as the program’s
presenters:
Deborah M. Miller, PhD, LISW
Mellen Center for MS, Cleveland Clinic
Amit Bar-Or, MD, CM, FRCPC
Professor, Neuro-immunology
Director, Experimental Therapeutics Program
Scientific Director, Clinical Research Unit
Montreal Neurologic Institute, McGill University
Robert Fox, MD
Mellen Center for MS, Cleveland Clinic
Marie Namey, APRN
Mellen Center for MS, Cleveland Clinic
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Program Outcome Measurement
Each year the National MS Society strives to provide educational programming
that is relevant and of interest to people living with MS. As a self-help group
leader, your feedback, and that of your group, is vital. We want to know what is
important in your lives and what you consider to be critical programming. Please
provide your feedback on this and future NAEP programming by completing our
short online survey at www.surveymonkey.com/s/GFDXCG7 or completing one of
the surveys we’ve enclosed for participants. Please mail all completed surveys
from group members to:
National MS Society
Heather Webb Jones
Broadway Station
900 S. Broadway, 2nd Floor
Denver, CO 80209
Resources
The National MS Society has an extensive library of resources about MS, including
publications about treatment options, symptom management, and the day to day
challenges of living with the disease. For more information please contact the
National MS Society at 1-800-344-4867 (1-800 FIGHT MS) or visit
nationalMSsociety.org and go to the About MS or Living with MS sections.
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Frequently Asked Questions (FAQs) commitment
How has treating MS changed in the last 20 years?
In the past 20 years, our understanding of multiple sclerosis has expanded
tremendously—and so have our choices. As recently as the early 1990s, we had
no effective treatments for MS. Now, thanks to ongoing research, we know more
about the origins of the disease, its triggering factors, and the wide variations in
symptom type, frequency and intensity. What’s more, we now have many
treatment options to modify disease activity for people with relapsing forms of
MS and better address symptom management.
What factors need to be taken into consideration when making treatment
decisions?
When considering a specific therapy we must decide how much risk we’re
comfortable with. In addition, we must weigh numerous other factors, such as:
our willingness to participate in careful screening and ongoing monitoring of our
health, our ability to tolerate different kinds of side effects, and the convenience
of one treatment method over another
How has the information age impacted medical decision making?
There was a time when we simply relied on doctors to make such decisions for us.
They told us what the best treatment was for our condition, and we accepted that
verdict. Now, many of us expect to take a greater role in our healthcare decisions,
partnering with our medical team and advocating for our needs. We are more
aware about what we want and don’t want out of our care. This dialogue leads to
greater adherence to treatment decisions and that awareness is easier to achieve
because of the vast amount of information now available.
How do emerging therapies differ from more established treatment options?
Because these medications have not been taken by as many people or for as
many years as the earlier therapies, we have less data on them. We don’t know
how people with more complicated health profiles will respond to them, or if very
rare side effects will emerge after a period of time.
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Injectable medications have been available the longest and because of that we
have the most research and the most clinical experience with them. We know
that on the whole, they are very safe, though they are generally thought to be
only partially effective at limiting relapses. All are considered first-line treatments,
meaning that the FDA has approved them for use in MS without requiring or
recommending that other medications be tried first.
What sources of information are usually considered when making medical
decisions?
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Scientific data, including clinical studies
The media, including online blogs and social media
Input from friends and family
Healthcare professionals
How do doctors analyze the benefits and risks of medications with their
patients?
There’s no single “right” amount of risk, and no “right” medication, but it is
important to be comfortable with our decision so that we stick with the
treatment and get the best possible result. Consider your job, family, social life,
hobbies and anything else that’s important to you —and think through the impact
that each risk or benefit would have in each of these realms— now and into the
future.
Our healthcare team can also help you build the skills necessary to wade through
the vast amounts of information, and make confident decisions. They can help us
assess the likelihood of various risks given our individual characteristics, and can
also help us put some risks in perspective.
Because the decision-making process is more complex now, because there are
more medications that we can use to treat MS, and there are certainly concerns
about the risk-benefit ratio, there should be more communication between us
and our healthcare providers.
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How does ones tolerance for risk, and that of their family, affect medical
decisions?
What feels like a safe bet for one person may feel reckless to another. Even
though the choice is ultimately up to us, family members may also bring up
considerations or pressures that might not be top-of-mind for us. By discussing
these concerns, family members can often agree on a plan that feels comfortable
to everyone.
Does a person’s disease condition impact how tolerant they are of risk?
People vary widely in their tolerance for risk. If we’ve experienced active MS that
causes problems we may gravitate toward a treatment that packs a bigger punch
up -front. We may be more willing to take certain risks associated with that
treatment—whether those are side effects or tolerability issues because we
understand the importance of limiting new relapses. If we are doing very well
with our MS overall, and a treatment is suggested that might limit relapses—so
it’s a kind of an investment in your future because we are very, very functional—
we may be less willing to take risks to decrease new injury
How do you weigh the risks of adverse events from a therapy compared to the
risks of not taking a disease modifying therapy?
Sometimes, we get very focused on the potential risk and lose track of the
purpose of a disease modifying therapy—to prevent relapses, progressive
disability, scars and injury to the brain and spinal cord. We get very focused on
the side effects and lose track of the bigger picture.
What should someone with MS think about when considering a switch in
disease modifying therapies (DMT)?
Medical professionals advise us not to change therapies just because a new DMT
becomes available. In certain cases, switching therapies can carry additional risks.
In some instances, physicians will recommend a “washout” period to ensure that
the first medication is out of our system before the new treatment is started; this
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prevents complications that could occur from two therapies being active at the
same time.
What are doctors looking for out of a treatment?
It’s important for us to understand the goals of different therapies. There are
three facets of treating their MS. One is treating active inflammation, typically
with IV steroids.
The second is disease modifying therapies. They aim to prevent relapses, prevent
lesions on the MRI, and prevent progressive disability over time. It’s not
restorative. We’re not going to feel better. It’s not something we’re going to
notice. It’s meant to be preventative. Doctors look at it from a relapse and lesions
on the MRI perspective.
The third is the symptoms.
How does that compare with the expectations someone with MS has about
their chosen treatment option?
While doctors look at disease modifying treatments from a functional point of
view, i.e. relapses and lesions on the MRI, we look at from a quality of life
perspective- Can I go to the soccer game? Can I go to work? Can I do what I want
to do at home? It’s important that both recognize the different views. It’s
important for doctors to recognize that we want to function. It’s important that
we recognize the doctor wants to keep the lesions off of the MRI because that’s
what’s going to keep us functioning over the long term. It needs to be a balance
of those two views.
What treatment options are available for someone with primary progressive
MS?
For those of us who live with progressive MS, the treatment options are much
more limited. Virtually every DMT approved for relapsing-remitting MS has been
tried (or is currently undergoing clinical trial) for progressive MS, but most haven’t
proved effective in people who are not experiencing relapses.
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In the meantime, physicians focus on providing therapies that can improve the
symptoms and day-to-day functioning of people with progressive MS
Why is it taking so long to find an effective disease modifying therapy for people
living with primary progressive MS?
Clinical trials for progressive MS are very challenging. Trials in relapsing-remitting
MS often rely on counting relapses or using MRI scans to detect immune activity.
Because there are no relapses to count, these strategies do not work for
progressive MS. Instead, researchers need to study very large groups of people
over very long periods of time to identify when progression occurs (or when an
experimental therapy halts progression). These are very, very difficult studies to
do. There is no easy way to identify progression. Researchers believe one way to
measure progression is through brain atrophy; worsening of physical disability is
another possible sign. But more definitive answers are needed.
Why is treating symptoms important?
Symptoms are what really affect quality of life over time. Symptom management
can be critical for a person who experiences such symptoms on a daily basis as
fatigue, problems with bladder control, numbness, tingling or a variety of other
symptoms. Symptomatic treatment can be quite effective.
Why is it important to make decisions regarding disease modifying therapies
and complementary/alternative (CAM) therapies with your healthcare team?
Most healthcare providers will not discourage us from pursuing other forms of
CAM—as long as they are not damaging to our health or cost too much.
Healthcare providers do want to know about all treatments we are pursuing so
they can help to balance them with medications. Some CAM treatments may
influence the way that our disease-modifying therapies or other prescriptions
affect us. And it’s important for our clinician to know what steps we’re taking to
really manage our illness. It’s important not to rely on CAM as a replacement for
MS disease-modifying medication. Many of these treatments can feel nourishing
and healthful, but they don’t undergo the same rigorous study of efficacy and
safety as approved medications.
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Are complementary and alternative therapies proven in the same way FDA
approved therapies are?
The data about CAM therapies is not as robust so we don’t have that exact
knowledge about the risks and benefits of some of these interventions. CAM
therapies don’t undergo the same rigorous study of efficacy and safety as FDA
approved medications.
What are basic nutritional guidelines for healthy living with MS?
A healthy diet is important for everyone. We now know that good dietary habits
can prevent heart disease, stroke, diabetes and perhaps some types of cancer.
Just like everyone else, we can be at risk for these other conditions, and should
eat well to minimize these risks.
Healthcare professionals generally recommend a Mediterranean-style diet, with
an abundance of lean protein—found in poultry, fish, beans and soy products—as
well as healthy, unsaturated fats like those in olive oil, and lots of fruits and
vegetables. The fiber in the fruits and vegetables can be especially helpful in
managing constipation, which often occurs with MS. What’s good for the heart is
good for MS.
Why is research on nutritional approaches or diets challenging?
It’s challenging to carry out an organized trial that relates to people’s diet because
people don’t always stick to diets.
What is research showing in terms of Vitamin D?
Researchers in France noted that low levels of vitamin D seem to trigger a similar
disease in mice. Numerous studies have shown a direct association between how
near to the equator people live and their exposure to the sun. That in turn affects
their vitamin D levels, which seems to correlate to their risk of developing MS.
Those with the lowest levels appear more likely to develop the disease.
Additional studies continue to examine the role of vitamin D in MS.
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What should someone with MS do before considering Vitamin D
supplementation?
There’s no consensus yet on whether, or how, this data should inform treatment
decisions. People who are interested in vitamin D supplementation may wish to
ask their healthcare provider for a blood test to find out if their levels are indeed
low. Without a test, it’s difficult to know the proper dosage, especially
considering that sunlight exposure and diet affect vitamin D metabolism and
absorption. Many experts recommend that if you do take vitamin D supplements,
that you take it as D-3, the form most available to the body, and consult your
physician for help in determining the best dosage for you.
What has research shown regarding the effect salt may have on MS?
Three studies conducted in 2012 suggested that excessive salt in the diet may
spur autoimmune activity, although the research is not conclusive. At this point
healthcare professionals are not recommending that people with MS modify their
salt intake, other than following a general low-salt diet, which is a general medical
recommendation.
Is exercise important for people living with MS?
We know that regular exercise contributes to heart health and to maintaining a
healthy weight. For decades, many doctors cautioned us against exercising, with
the concern that it could worsen fatigue and potentially raise the core body
temperature in people who already had a difficult time managing heat.
Now we understand that MS isn’t a reason to sit on the sidelines; in fact, studies
show that exercise is quite beneficial for people with MS.
What has research show in terms of the effect of smoking and second hand
smoke on MS?
Research suggests that people who have smoked at any time in their lives have a
nearly 30 percent higher risk of developing MS than people who have never
smoked. In addition, those who smoked and developed relapsing-remitting MS
had more than three times the risk of it converting to secondary-progressive MS
than those who had relapsing-remitting MS but never smoked. Smokers with MS
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develop more lesions and brain atrophy, and a greater degree of disability in a
shorter period. They are also more likely to die at a younger age.
Suggested group discussion questions:
1. At what point after diagnosis did you consider your treatment options?
2. Were you ever confused about available options or the difference between
disease modifying treatment and symptom management?
3. What type of process did (or do) you go through to decide your course of
treatment? Who was/is included in that decision making process?
4. How much does scientific data, advertising, personal anecdotes or social
media factor into your decisions surrounding disease-management
strategies like treatment and lifestyle?
5. What role would you say your personal tolerance for risk plays in your
decisions? How does the tolerance for risk vary within your family? With
your neurologist?
6. When weighing risks and benefits, do you feel that you, your family
members and your healthcare team have the same goals?
7. Beyond the initial decision about whether to start a disease modifying
therapy and which one, what other lifestyle related decisions were you
faced with?
8. Have you considered any symptom management strategies?
9. Have you tried any CAM therapies? Which have been most successful for
you?
10.What are some of your basic wellness practices or intentions for staying
healthy even with MS?
Additional Resources
PUBLICATIONS
The publications listed below are available at nationalMSsociety.org/brochures
or by calling 1-800-344-4867. In addition to the publications below, the National
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MS Society’s flagship publication, Momentum, offers many articles on treatment
and lifestyle choices. Visit MomentumMagazineOnline.com to explore.
GENERAL INFORMATION
The MS Disease-Modifying Medications
Information on the disease-modifying medications. Includes how each is taken,
potential side effects and benefits. Also includes information on assistance to
alleviate financial difficulties.
Making Comfortable Treatment Decisions: Tips for Thinking Clearly About
Benefits and Risks
Factors that complicate medical decision-making.
STAYING WELL
Clear Thinking about Alternative Therapies
Facts and common misconceptions, plus practical ways to evaluate benefits and
risks of alternative and complementary therapies.
Exercise as Part of Everyday Life
Describes ways to make physical activity a regular part of staying healthy. Includes
tips on handling MS symptoms.
Food for Thought: MS & Nutrition
A guide to healthy eating, which includes managing symptoms, changing eating
habits, and the effects of diet on MS.
Managing MS through Rehabilitation
An overview of what rehabilitation can do for mobility, fatigue, driving, speech,
memory, bowel or bladder problems, sexuality and more.
Stretching for People with MS
An illustrated manual showing range of motion, stretching and balance exercises
for a basic at-home program.
Stretching with a Helper for People with MS
An illustrated manual showing most of the same exercises, but designed for
individuals who need a helper.
Multiple Sclerosis & Your Emotions
How to handle some of the emotional challenges created by MS.
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Preventive Care Recommendations for Adults with MS
A colorful chart detailing the medical tests, vaccinations, and general health and
safety rules recommended for all adults with MS.
Vitamins, Minerals & Herbs in MS: An Introduction
A practical guide to dietary supplements for people with MS. Outlines what is and
is not known, with references for further study.
MANAGING SPECIFIC ISSUES
Depression and Multiple Sclerosis
Discusses the symptoms of depression, the relationship between MS and
depression, available therapies, and where to find help.
Review of Regular Medications & Supplements
A form to help people keep track of their prescription drugs, over-the-counter
remedies, herbals, vitamins or other dietary supplements.
Sleep Disorders & MS: The Basic Facts
Reviews common sleep problems and what can be done about them.
MANAGING MAJOR CHANGES
Managing Progressive MS
An overview of symptom management and coping strategies when progressive
MS makes the road rougher.
So You Have Progressive MS?
An MS veteran of more than a decade S writes frankly about life, family, work,
dating and pursuing your dreams when the diagnosis is progressive MS.
ONLINE
The National MS Society also offers helpful information online about making
treatment and lifestyle choices in the context of MS.
Live Fully, Live Well
nationalMSsociety.org/LiveFullyLiveWell
A comprehensive wellness program from the National MS Society and Can Do MS,
designed for people living with MS and their support partners. Live Fully, Live Well
covers topics affecting the whole family living with MS in order to strengthen
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relationships, increase understanding and promote improved health and quality
of life.
MS Learn Online
nationalMSsociety.org/MSLearnOnline
The Society offers a variety of online educational programs on MS, including MS
basics, symptom management, relationships, employment and research.
Transcripts and podcasts are available for most programs.
Multimedia Library: DVDs
nationalMSsociety.org/DVDs
These videos can help you on your personal journey of living with MS. Learn more
about health and wellness, research, employment, mobility and accessibility,
parenting and more.
Primary-Progressive Multiple Sclerosis: Perspectives on Moving Forward
nationalMSsociety.org/ PPMSmovingforward
A companion DVD to the book Primary Progressive Multiple Sclerosis: What You
Need to Know, this program profiles five people living with primary-progressive
MS, who offer their strategies for managing the disease and moving forward with
their lives.
Online Classes
nationalMSsociety.org/onlineclasses
Online courses provide in-depth information that can be accessed at your
convenience. Course topics are wide-ranging, from intimacy to financial matters.
Of particular note is a four-hour course on “Navigating the Medication Maze,”
which helps learners analyze risks and benefits, and use a decision map to
objectively review information.
PRESCRIPTION ASSISTANCE PROGRAMS
Aubagio®
855-676-6326
MSOnetoOne.com
Avonex®, Tecfidera™ or Tysabri®
800-456-2255
AVONEX.com
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TYSABRI.com
TECFIDERA.COM
Betaseron®
877-836-5724
betaseron.com/betaplus/affordability
Rebif ®
877-44-REBIF (877-447-3243)
mslifelines.com
Extavia®
866-925-2333
extavia.com
Copaxone®
800-887-8100
Gilenya®
877-408-4974
pharma.us.novartis.com/about-us/our-patient-caregiverresources/pafenrollment. shtml
NeedyMeds
needymeds.org
OTHER ORGANIZATIONS
The following organizations can provide additional information about research,
medications and living with MS.
Can Do MS A nonprofit organization that provides lifestyle empowerment
programs for people living with MS and for their support partners.
800-367-3101
mscando.org
The Multiple Sclerosis Coalition A partnership of eight organizations, including
the National MS Society, striving to educate, advocate, collaborate and improve
the efficiency of services for individuals with MS.
800-532-7667 x 112
ms-coalition.org/cms/index.php
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The Emerging Therapies Collaborative A partnership of the Multiple Sclerosis
Coalition, the American Academy of Neurology, the Multiple Sclerosis VA Centers
of Excellence East and West, and the Americas Committee for Treatment and
Research in Multiple Sclerosis (ACTRIMS). The partnership is focused on
promoting optimal, individualized treatment through effective communication
and medical decision-making. The collaborative offers downloadable, evidencebased information.
ms-coalition.org/emergingtherapies
Multiple Sclerosis International Federation (MSIF) This international organization
links the activities of MS societies worldwide, and promotes research and
awareness.
+4 420 7620 1911
msif.org
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