Understanding Adherence to Oral Cancer Therapy
Multiple Myeloma | Cancer of the Bone Marrow
12650 Riverside Drive, Suite 206
North Hollywood, CA 91607 USA
(USA & Canada)
© 2015, International Myeloma Foundation, North Hollywood, California (u-adher_g3_15)
to Oral Cancer Therapy
A publication of the International Myeloma Foundation
Improving Lives Finding the Cure®
Improving Lives Finding the Cure®
Table of Contents
About the International Myeloma Foundation
Founded in 1990, the International Myeloma Foundation (IMF) is the
oldest and largest myeloma-specific charity in the world. With more than
350,000 members in 140 countries, the IMF serves myeloma patients, family
members, and the medical community. The IMF provides a wide range of
programs in the areas of Research, Education, Support, and Advocacy:
RESEARCH The IMF is the leader in globally collaborative myeloma research.
The IMF supports lab-based research and has awarded over 100 grants to top
junior and senior researchers since 1995. In addition, the IMF brings together
the world’s leading experts in the most successful and unique way through
the International Myeloma Working Group (IMWG), which is publishing in
prestigious medical journals, charting the course to a cure, mentoring the next
generation of innovative investigators, and improving lives through better care.
EDUCATION The IMF’s educational Patient & Family Seminars, Medical
Center Workshops, and Regional Community Workshops are held around the
world. These meetings provide up-to-date information presented by leading
myeloma specialists and researchers directly to myeloma patients and their
families. Our library of more than 100 publications, for patients and caregivers
as well as for healthcare professionals, is updated annually and available free
of charge. Publications are available in more than 20 languages.
SUPPORT Our toll-free InfoLine at 800-452-CURE (2873) is staffed by
coordinators who answer questions and provide support and information
via phone and email to thousands of families each year. The IMF sustains a
network of more than 150 support groups and offers training for the hundreds
of dedicated patients, caregivers, and nurses who volunteer to lead these
groups in their communities.
ADVOCACY The IMF Advocacy program trains and supports concerned
individuals to advocate on health issues that affect the myeloma community.
Working both at the state and federal level, the IMF leads two coalitions to
advocate for parity in insurance coverage. Thousands of IMF-trained advocates
make a positive impact each year on issues critical to the myeloma community.
Learn more about the way the IMF is helping to improve the quality of life
of myeloma patients while working toward prevention and a cure.
Contact us at 800-452- CURE (2873) or visit myeloma.org.
Improving Lives Finding the Cure®
What is adherence?
What can lead to poor adherence?
The most common obstacles to adherence
Patient-to-patient variations in adherence
Myths about adherence
Strategies for achieving successful adherence
Available resources 9
Understanding Adherence to Oral Cancer
Therapy is intended to help myeloma
patients and their healthcare providers
work together to overcome any and all
obstacles to adherence to safe and effective oral cancer therapy. This booklet is
designed chiefly to provide support to
patients and caregivers, and thus is part
of Step 4, Supportive Care, in the IMF’s
10 Steps to Better Care® platform.
The IMF hopes that this booklet will help
you to understand and then overcome
potential obstacles to complying with
your doctor’s treatment plan. The IMF
is here not only to help find a cure for
myeloma, but to help you live longer and
better as a myeloma survivor. Call the IMF
at 800-452-CURE (2873) in the US and
Canada, or 818-487-7455 worldwide, or
email us at [email protected]. We are
here to help you.
What is adherence?
“Adherence” to an oral therapy means that
in order to achieve the best results:
You take the correct medicine.
You take the correct dose.
You take your medication in the
You take your medication for the
prescribed length of time.
No doses are taken in the wrong
No doses are taken at the wrong time.
No doses are missed.
No extra doses are taken.
currently in clinical trials. Oral therapy now
plays, and will continue to play, an important role in treating myeloma. Adhering to
the doctor’s treatment plan – and seeking
help for any possible problems that could
cause deviation from that plan – are crucial to achieving the best possible treatment outcome.
A major benefit of oral cancer therapy
is that it is easier, faster, and more painless to swallow a pill than to have an
intravenous infusion or an injection, the
customary ways that chemotherapy has
been administered. Another benefit of
oral agents to treat cancer is their convenience, since they do not require a trip to
the doctor’s office for each dose. Quality
of life improves when patients have the
flexibility to carry out their daily activities
(whether on the job or at home) and plan
travel without having to factor in visits
to the clinic or doctor’s office at frequent
intervals. Because myeloma is a chronic
disease – one that cannot usually be cured
but can be controlled over a long period of
time – the best treatment model for many
patients is ongoing, long-term therapy
with an oral drug that gives them the ability to have good quality of life with more
control over their time. Long-term followup on use of an oral therapy for myeloma
for greater than 10 months indicated that
In the case of myeloma, there are currently
three US Food and Drug Association (FDA)
approved treatments available to myeloma
patients that are taken orally: Thalomid®
(thalidomide), Revlimid® (lenalidomide),
and Pomalyst® (pomalidomide). Several
other oral therapies for myeloma are
there was significantly improved overall survival (OS), especially when careful
dose adjustment was done to prevent
Despite its obvious benefits to patients,
however, oral cancer therapy requires
a shift in responsibilities that can be
challenging. Whereas intravenous (IV)
or subcutaneous (SQ) chemotherapy
is administered and monitored by the
healthcare team, oral chemotherapy
requires that the patient (or caregiver, in
some cases) assume these responsibilities.
Patients and their caregivers must be up to
the task of understanding and complying
with the treatment plan, and finding help
to remove obstacles that stand in the way
of adherence. With oral cancer therapy, the
success or failure of treatment can hinge
on a patient’s ability to acquire a drug,
take it according to the doctor’s orders,
and communicate quickly and accurately
with the healthcare team if any problems
or side effects occur.
What can lead
to poor adherence?
A number of issues pose obstacles for
patients. Here are some common problems patients experience:
ifficulty getting to an appointment
If a patient misses a doctor’s appointment, he or she may not get the needed
prescription for that month, delaying
access to treatment.
ack of adequate insurance
Some patients have no insurance and
others have inadequate coverage. These
patients need help finding out how to
initiate an application process with the
assistance team of the pharmaceutical
firm that makes the therapy, or a nonprofit foundation that subsidizes cancer
therapy, to supply the drug at low or
omplicated insurance plans
Some patients who do have health
insurance coverage might have complicated insurance plans. It is important to
find out if the insurer pays for the drug
in part or in full, and if approval from the
insurance company is necessary before
eed for co-pay or co-insurance
Many patients need co-pay or co-insurance assistance, and are not aware that
non-profit foundations are available to
ltimately, cost is still too high
Many patients find that their share of the
cost burden for treatment is still overwhelming, and they either “stretch” their
treatment supply to last longer than the
prescribed period, or forego treatments
A number of adherence issues stem from
poor communication between doctors
and their patients. For example:
he patient might be too ill to focus
on correct prescription therapy
When discussing oral therapy at a doctor visit or when being discharged from
the hospital, patients may be feeling ill
or may be suffering from stress or from
some level of cognitive impairment that
is a barrier to understanding the treatment, the means of accessing it, and the
schedule for taking it.
he patient might forget or
intentionally skip doses
Some patients who feel well and have
good quality of life while on oral chemotherapy either forget to take their
treatment or believe that they can skip
days or go off treatment altogether
without impairing their prognosis.
Patients may not understand the nature
of a chronic disease or the need for
he patient might not adhere to
prescribed therapy due to side effects
Some of those who may be experiencing
side effects, or fear they will experience
side effects of treatment, skip doses
without consulting the doctor in the
hope that the side effect will either not
occur or improve.
he patient might be hesitant to
discuss questions and concerns.
Patients may be afraid to contact their
doctors to clarify treatment issues or to
complain of side effects because they
don’t want to be perceived as troublesome. Others may have given up on
communicating with an overburdened
healthcare team that has a poor track
record on returning calls.
The most common obstacles
Factors that are obstacles to adherence
can be social, economic, disease-related,
therapy-related, or related to problems in
the healthcare system. A survey among
the nurses of the IMF Nurse Leadership
Board (NLB) ranked the top five barriers, in
order of frequency, as 1) cost and income,
2) treatment complexity, 3) medication
side effects, 4) difficulty in getting prescriptions filled, and 5) disease symptoms.
A survey of 20,000 patients with chronic
diseases published in the journal Health
Expectancy in September 2010, listed
1) financial hardship, 2) side effects,
3) concerns about medications, and 4) lack
of perceived need as the four key reason
Many patients need help and support in
the following areas:
Learning about resources that help
patients access and pay for their
Receiving good instructions and follow-
up support on taking their medications
in the proper way, at the proper time;
Having information at hand on what
side effects to expect and when and
how to reach the doctor or a nurse at the
office, in the evening, and on a weekend
Having support at home and/or through
a social worker or nurse to help manage
treatment when a patient is feeling too
ill to manage on their own.
Not only are there variations in adherence between different patients, but
individuals themselves may vary in adherence depending on where they are in the
course of treatment and how they are
feeling physically and emotionally at that
time. Patients make and change decisions
about their medications based on their
beliefs about their treatment, disease, and
Myths about adherence
Myth #1: Forgetfulness is the primary reason for poor adherence.
Forgetfulness occurs randomly, causing
occasional slips and lapses in taking medications, but long-term adherence involves
a conscious decision-making process
that each patient makes based on beliefs
and experiences. Only 12% of the 20,000
patients in the Health Expectancy survey
responded that problems remembering to
take medication were an obstacle to longterm adherence.
Myth #2: Healthcare providers
satisfy patient medication
Patients often complain that not enough
information is provided to them about
their oral prescription medications.
Patients need and want information about
the benefits as well as the side effects of
treatment. Multiple studies have demonstrated that patients receive variable
information on the purpose, frequency,
timing, dose, and strength of their treatments, and poor information about side
effects, risks, costs, efficacy, duration,
and barriers to the use of their medications. Doctors may have limited time to
discuss these issues or may believe that
the information will “frighten” patients
and make them less adherent. The facts
indicate that patients want to be empowered with information, and that the better
informed they are about their treatments,
the more likely they are to discuss benefits and side effects with their healthcare
providers, address problems early, and
Myth #3: Providers and patients
routinely discuss adherence.
Doctors mistakenly assume that their
patients are adherent, but the majority
of patients do not communicate with
their doctors when they do not want to
take a drug at all or decide to take it less
Myth #5: Simplifying instructions/
regimens solves the problem
In fact, reviews show that simplifying regimens or using calendar/reminder packaging only marginally improves adherence
to oral therapy. The real issue is how well
the treatment fits in with the individual
patient’s routine, expectations, and beliefs.
Myth #6: Side effects
automatically reduce adherence.
A common misconception is that patients
who suffer side effects of a particular
treatment are those who are most likely
to stop taking it. On the contrary, patients
who suffer side effects and report those
problems to the healthcare team are most
likely to have adjustments made in the
dose and/or schedule of their medications.
Once the adjustments have been made
and the most tolerable and effective dose
has been established, these patients are
most likely to adhere to, and benefit from,
Myth #4: There is a typical
non-adherent patient type.
Surprisingly, adherence to prescription
medications has been proven to be unrelated to a patient’s level of self-care and
lifestyle. Trained athletes such as swimmers and marathon runners, or those
who religiously follow healthy diets and
exercise routines, may not adhere to oral
medication prescriptions, while those who
are overweight, who regularly smoke and
drink, and who rarely exercise may completely adhere to their oral therapy.
Strategies for achieving
What are the costs?
Myeloma is a chronic illness which, for
many patients, can be well-controlled in
the long term with careful, continuous
therapy. The keys to successful adherence
are based in part on excellent communication between healthcare providers
and their patients. Doctors, nurses, and
patients can work together to overcome
obstacles to adherence. Here are some
suggestions that may be helpful:
What is the timing? (i.e., in the morning?
Talk to your healthcare team!
How can uninsured patients access
Bring a caregiver, spouse, or friend to
your doctor visits.
Make sure you understand why
and how you should be taking your
Make sure you understand your insurance coverage, and any co-pay issues.
Every member of the healthcare team
should be able to discuss and answer the
What is the dose?
with meals? at bedtime?)
What is the schedule? (i.e., every day?
every other day? days 1-14?)
What is the time to response?
What is the duration of a particular
treatment through insurance assistance
How can underinsured patients (those
who cannot afford their co-payments)
access treatment through co-pay assistance programs?
Is there help for patients who need
transportation or other assistance to
get their medication?
What are the benefits of therapy?
What are the side effects?
What other important resources are
What are the potential side effects and
how are they managed?
available to patients, such as pharmacies, nutritionists, social workers,
information specialists, and support
What are treatment safety recommendations, including which baseline
and follow-up tests to use to monitor
potential side effects such as fatigue, low
white count, gastrointestinal problems,
and blood clots?
Rapid start to therapy
How can patients receive their therapy
as quickly as possible and enroll in any
required safety programs as quickly
It is critically important that healthcare
providers and patients communicate with
each other effectively. Doctors must be
able to discuss all aspects of treatment
thoroughly. In turn, patients and caregivers must be encouraged to discuss their
fears, concerns, financial issues, and any
other obstacles to adherence at the time
a drug is prescribed and throughout treatment. Patients must rapidly and effectively describe any and all side effects to
the healthcare team so that measures can
be taken to ensure that they can continue
therapy safely and effectively.
A well-informed, proactive patient is best
armed to overcome obstacles to successful and safe treatment. Patients must not
be reluctant to tell their doctors that they
have taken themselves off medication or
regularly skip doses. Doctors can’t fix what
they don’t know is broken. Patients who
do not or cannot take the steps to access
treatment, or decide not to take it for any
reason, cannot expect to benefit from it.
As former Surgeon General of the United
States C. Everett Coop famously said,
“Drugs don’t work in patients who don’t
The IMF’s 10 Steps to Better Care, a stepby-step guide to your care from diagnosis through the latest clinical trials, is
available on our website myeloma.org,
complete with publications that can be
viewed or downloaded. The IMF InfoLine
team is here to help you with information
about treatments, side effects, and the
resources available to you as a patient or
caregiver. We can be reached by calling
800-452-CURE (2873), toll-free in the US
and Canada, or 818-487-7455 from other
parts of the world, or by writing to us at
[email protected]. We are here to
help, and we look forward to hearing
International Myeloma Foundation
myeloma.org, 800-452-CURE (2873),
publications, support groups (including an on-line group), InfoLine information specialists, advocacy for oral parity
legislation (making sure that each state
passes a law to ensure that oral cancer
treatments are covered by insurance at
the same level as injectable treatments)
IMF Nurse Leadership Board (NLB)
Publications from the Clinical Journal of
Oncology Nursing on Survivorship Care
Plan for Multiple Myeloma, Side Effects
Fact Sheets, Guidelines for Management
of Side Effects of Novel Therapies, available at myeloma.org
IMF International Myeloma Working
Group (IMWG) Guidelines
Capsule summaries of IMWG publications on a wide range of treatment- and
side effect-related topic, available at
American Cancer Society
cancer.org, 800-227-2345, rides to
treatment, lodging, patient navigator
Association of Cancer Online Resources
acor.org, a network of online communities, including one for myeloma
cancercare.org, 800-813-4673, individual counseling, patient education, insurance information, financial assistance,
Cancer Legal Resource Center
866-843-2572, legal information and
resources for cancer patients
Cancer Support Community
of The Wellness Community and Gilda’s
Club), provides support helpline, emotional support, referral to counseling,
online support, distress screening,
referrals to local Cancer Support Communities around the US and among
Celgene Patient Support
Center for Medicare Advocacy
medicareadvocacy.org, helps older
adults with Medicare and health insurance choices
Chronic Disease Fund
cdfund.org, 877-968-7233, financial
assistance for oral myeloma treatments
clinicaltrials.gov, the most comprehensive search program for clinical trials around the globe, provided by the
National Cancer Institute (NCI); clinical
trials provide experimental drugs at no
cost to patients
Diplomat Specialty Pharmacy
the nation’s largest privately owned specialty pharmacy, they help patients with
chronic and serious diseases, including
myeloma, to quickly and seamlessly
access their prescription medications;
also help patients who are in need of copay assistance by working with foundations to secure funding for them
Leukemia & Lymphoma Society
Co-Pay Assistance Program
Meals to Heal
meals-to-heal.com, registered oncology
dietician, referrals to nutrition professionals, nutrition information, nutritious
meals customized and delivered to
Medicare Consumer Guide
medicareconsumerguide.com, unbiased educational materials pertaining
to Medicare and related insurance
millennium.com, 866-835-2233, Velcade
Reimbursement Assistance Program can
help with understanding health insurance, Medicare, and Medicaid
My Medicare Matters
mymedicarematters.org, sponsored by
the National Council on the Aging, helps
Medicare enrollees choose a Part D
978-865-4115, financial assistance,
onyx.com, 855-669-9360, a comprehensive patient and caregiver support and
Partnership for Prescription
Patient Access Network Foundation
866-316-7263, financial assistance
Patient Advocate Foundation
Patient Services, Inc. (PSI)
patientservicesinc.org, bone disease
from myeloma is included in the list of
areas covered for co-pay assistance
R x Assist Patient Assistance Program
rxassist.org, list of free drug programs for
patients in need that is run by pharmaceutical companies
State Health Insurance Assistance
800-633-4227, resource for health insurance questions, particularly Medicare
The printing of this patient education booklet was supported by a grant from Celgene Corporation.
10 STEPS TO BETTER CARE®
A UNIQUE TOOL FOR DIAGNOSTIC
AND TREATMENT INFORMATION
One of the most daunting aspects of being diagnosed with multiple myeloma
(MM) is learning about – and understanding – an unfamiliar disease that is quite
complicated. From diagnosis to long-term survival, the 10 Steps to Better Care®
will guide you through the MM journey:
1. Know what you’re dealing with. Get the correct diagnosis.
2. Tests you really need.
3. Initial treatment options.
4. Supportive care and how to get it.
5. Transplant: Do you need one?
6. Response Assessment: Is treatment working?
7. Consolidation and/or maintenance.
8. Keeping Track of the Myeloma: Monitoring without mystery.
9. Relapse: Do you need a change in treatment?
10. New Trials: How to find them.
Visit 10steps.myeloma.org to gain a better understanding of the disease and
diagnosis, and proceed through the steps to learn the best tests, treatments,
supportive care, and clinical trials currently available.
As always, the International Myeloma Foundation (IMF) urges you to discuss
all medical issues thoroughly with your doctor. The IMF is here to equip you
with the tools to understand and better manage your MM. Visit the IMF website
myeloma.org or call the IMF InfoLine at 800-452-CURE (2873), which is staffed
by trained information specialists, with your questions or concerns. The IMF is
here to help.