Transcript Mastering “The New Normal” - Fibromyalgia Information Foundation

Fibromyalgia Information
Foundation
Fall Conference 2008
F I F
www.myalgia.com
New developments in
fibromyalgia research and
treatment
Robert Bennett MD, FRCP, FACP, MACR
FIF
Some of the FM drug studies that are
underway or completed
ACTIVE STUDIES
COMPLETED STUDIES
Ultracet *
Eszoplicone
Calcitonin
Reboxetine *
Quetiapine
Xyrem *
Etoricoxib
Rotigitone *
Armodafinil
Nabilone
Neurotropin
Fluoxetine
Naltrexone
Amitryptiline
Duloxetine
Milnacipran
Desvenlafaxine
Pregabalin *
Gabapentin
D-ribose
MK-677 *
Ropinirole
Pyridostigmine *
Pramipexole *
Hydrocortisone *
Levitiracetam
Lacosamide
Casopitant
Two drugs currently FDA approved
for fibromyalgia
1. June 21, 2007 - Lyrica (pregabalin)
FDA approved indications:
Partial onset seizures
Post herpetic neuralgia
Fibromyalgia
2. June 16, 2008 - Cymbalta (duloxetine)
FDA approved indications:
Depression
Diabetic neuropathy
Generalized anxiety disorder
Fibromyalgia
Change from baseline in LS mean pain score
Pregabalin - Improvement in weekly
mean pain scores
0
Placebo
Pregabalin 300 mg/d
Pregabalin 450 mg/d
Pregabalin 600 mg/d
-1
-2
-3
1
2
3
4
5
6
7
8
9
10 11 12 13
Treatment Week
Arnold et al. EULAR 2007, Barcelona, Spain, 13-16 June 2007.
EP
Change from baseline in LS mean pain score
Pregabalin - Improvement in weekly
mean pain scores
0
Placebo
response
-1
-2
-3
1
2
3
4
5 6 7 8 9
Treatment Week
10 11 12 13
Arnold et al. EULAR 2007, Barcelona, Spain, 13-16 June 2007.
EP
Pregabalin Adverse Events
Dizziness
Somnolence
Weight gain
Nocebo
response
Headache
Vision blurred
Nausea
Dry mouth
Constipation
PBO
300 mg/d
450 mg/d
600 mg/d
Fatigue
Peripheral edema
Discontinuations*
*Due to all-cause AEs
0%
7
5%
10%
15%
20%
25%
30%
35%
40%
45%
Arnold et al. EULAR 2007, Barcelona, Spain, 13-16 June 2007.
50%
Change from baseline in LS mean pain score
Duloxetine - Improvement in weekly
mean pain scores
0.0
Placebo
Duloxetine 60 mg qd
-0.5
Duloxetine 60 mg bid
-1.0
†
-1.5
†
†
-2.0
†
†
*
†
*
†
-2.5
†
†
†
†
-3.0
†
-3.5
0
2
4
6
8
10
12
Week
Arnold LM et al. (2005), Pain 119(1-3):5-15
Change from baseline in LS mean pain score
Duloxetine - Improvement in weekly
mean pain scores
0.0
-0.5
Placebo
response
-1.0
†
-1.5
†
†
-2.0
†
†
*
†
*
†
-2.5
†
†
†
†
-3.0
†
-3.5
0
2
4
6
8
10
12
Week
Arnold LM et al. (2005), Pain 119(1-3):5-15
% of Patients
Duloxetine: Adverse Events
45
40
35
30
25
20
15
10
5
0
†
Nocebo
response
†
**
Placebo (N=120)
Duloxetine 60 mg qd (N=118)
Duloxetine 60 mg bid (N=116)
†
*
*
†
*
*
*
*
**
*
Arnold LM et al. (2005), Pain 119(1-3):5-15
*
Are the placeobo and
nocebo response for real?
Yes they are for real
Anatomy
of pain
3. Brain
4. Descending
modulation
1. Peripheral tissues
2. Spinal cord
What treatments do FM
patients really use?
NFA internet survey 2005 - Interventions
Effectiveness
(0-10 scale)
Use
Prescription sleep medications
6.5± 2.7
52%
Prescription pain medications
6.3±2.4
66%
Resting
6.3 ±2.5
86%
Heat modalities (warm water, hot packs)
6.3 ±2.3
74%
Prescription antidepressants
6.2±2.8
63%
Massage/reflexology
6.1 ±2.8
43%
Pool therapy
6.0 ±3.0
26%
Stretching
5.4 ±2.6
62%
Non-aerobic exercise (stretching,yoga)
5.1±2.9
24%
Relaxation/meditation
5.1 ±5.5
47%
Chiropractic manipulation
5.1 ±3.0
30%
Aerobic exercise
5.0±3.0
32%
Trigger point injections
5.0 ±3.3
21%
Intervention
Bennett et al BMC Musculoskeletal Diseases 2007, 8:27
NFA internet survey 2005 - Interventions
Effectiveness
(0-10 scale)
Use
Prescription sleep medications
6.5± 2.7
52%
Prescription pain medications
6.3±2.4
66%
Resting
6.3 ±2.5
86%
Heat modalities (warm water, hot packs)
6.3 ±2.3
74%
Prescription antidepressants
6.2±2.8
63%
Massage/reflexology
6.1 ±2.8
43%
Pool therapy
6.0 ±3.0
26%
Stretching
5.4 ±2.6
62%
Non-aerobic exercise (stretching,yoga)
5.1±2.9
24%
Relaxation/meditation
5.1 ±5.5
47%
Chiropractic manipulation
5.1 ±3.0
30%
Aerobic exercise
5.0±3.0
32%
Trigger point injections
5.0 ±3.3
21%
Intervention
Bennett et al BMC Musculoskeletal Diseases 2007, 8:27
NFA internet survey 2005 – Analgesic use
Helpful (%)
Ever used
Use now
Hydrocodone + APAP
75
44
18
Morphine
70
14
2
Oxycodone + APAP
67
32
7
MS Contin
65
5
1
Methadone
58
6
2
Codeine + APAP
55
47
4
Propoxyphene + APAP
54
44
8
Ibuprofen
51
87
36
Tramadol + APAP
50
27
7
Tramadol
44
46
13
Naproxen
39
66
20
Acetaminophen
36
94
35
The most helpful drugs were all “opioids”
Bennett et al BMC Musculoskeletal Diseases 2007, 8:27
PET Scanning
The Journal of Neuroscience, September 12, 2007 • 27(37):10000 –10006
Neurobiology of Disease Decreased
Central-Opioid Receptor Availability in
Fibromyalgia
Richard E. Harris, Daniel J. Clauw, David J. Scott, Samuel A. McLean, Richard H.
Gracely, and Jon-Kar Zubieta
μ-Opioid receptor availability in fibromyalgia
N. acumbens
L. amygdala
Finding:
About 1/3 of FM
patients have
nearly maximal
occupation of
opioid receptors
R. ant. cingulate
Harris et al. The Journal of Neuroscience 27(37):10000 –10006
What does this stuff really mean?
FINDING: Some FM patients have more
endorphins than healthy individuals and their
endorphin receptors are full
CONSEQUENCE: These same patients will
be relatively resistant to medications
containing opioids
Why do doctors prescribe
antidepressants, even when
you’re not depressed?
Linking depression and pain
Depression is associated with low brain levels of monoamines
Serotonin, nor-epinephrine and dopamine
Linking depression and pain
Prefrontal cortex
Limbic system
Amygdala
Hypothalamus
Hippocampus
Nor-epinephrine:
Locus coeruleus
Serotonin:
Raphe nucleus
Sleep center
Spinal cord
ReducedLinking
serotonin
/ norepinephrine
depression
and pain
Depressed Mood
Poor Concentration
Loss of Appetite
Low Sex Drive
Loss of Pleasure
Psychomotor Retardation
and Agitation
Insomnia
Hypersomnia
Increased pain susceptibility
Anatomy
of pain
3. Brain
4. Descending
modulation
1. Peripheral tissues
2. Spinal cord
N Engl J Med 2005;352:1112-20.
The serotonin syndrome is an adverse drug reaction
that results from therapeutic drug use or inadvertent
interactions between drugs
Serotonin syndrome
Cause: excessive stimulation of serotonin receptors
Presentation:
Agitation or restlessness
Nausea, vomiting and diarrhea
Confusion , hallucinations
Poor coordination
Tachycardia
Rapid changes in blood pressure
Sweating
Hyper-reactive reflexes
Fever
Seizures
Coma
Serotonin syndrome – implicated drugs
In some patients combinations of the following
drugs can lead to a serotonin syndrome:
SSRIs: citalopram (Celexa), fluoxetine (Prozac)
SNRIs: duloxetine (Cymbalta), venlafaxine (Effexor)
NDRIs: buproprion (Wellbutrin)
MAOIs: isocarboxazid (Marplan) and phenelzine (Nardil)
Analgesics: tramadol (Ultram), fentanyl (Sublimaze)
Anti-migraine: sumatriptan (Imitrex) and zolmitriptan (Zomig)
Anti-nausea: metoclopramide (Reglan) and ondansetron (Zofran)
Bipolar: lithium (Lithobid)
Cough: dextromethorphan (Robitussin DM)
Herbal supplements: St. John's wort and ginseng
This risk depends on genetic make-up (CYP 450 genes)
What you have always wanted to know
about Cytochrome P450
18 families and 43 variants
Variant
CYP2D6*1
Activity
normal
Nomenclature: CYP1A1, CYP2D6, CYP3A4,
etc.
CYP2D6*3 absent
Function: drug metabolism
Relevance: drug interactions
Variants are genetically determined
CYP2D6*4
absent
CYP2D6*5
absent
CYP2D6*9
low
CYP2D6*10 low
CYP2D6*17 low
About 10% of Caucasians have low CYP2D6 activity
Individualize drug dosing based on
metabolic profiling of CYP variants
2005 - The FDA-approved AmpliChip for analysis of CYP2D6 and
CYP2C19, variants of CYP450
1. Extensive metabolizers. Can be administered drug in "standard“
dosages
2. Intermediate metabolizers. Multiple drug therapy can turn in people
into poor metabolizers.
3. Poor metabolizers. May develop drug accumulation and adverse
reactions
4. Ultrarapid metabolizers. May experience either no effect or lessthan-expected effectiveness from their drug therapy
You don’t have to wait 5 years
Learn about fibromyalgia and help fellow sufferers
Adopt a positive attitude, newer treatments are on the way
Maintain a regimen of gentle stretching and exercise
Learn to be kind to your body
Maximize your “sleep hygiene”
Give medications a chance (many need 3-4 weeks to work)
The “New Normal”:
Thriving in the here and now!
Rebecca Ross RN, PhD
Psychiatric Mental Health Nurse Practitioner
FIF
Identifying YOUR “New Normal”
• Fibromyalgia-related changes occur in many
spheres of life:
–
–
–
–
–
–
Physical Ability,
Energy Level,
Cognitive Ability,
Social Function,
Financial Stability,
Role Expectations (spouse, parent, employee, etc).
“If you cry because the sun has gone out of
your life, your tears will prevent you from
seeing the stars.” -William Shakespeare
Accepting “The New Normal”
“The secret of health for both mind and body is not to
mourn for the past, worry about the future or
anticipate troubles, but to live in the present moment
wisely and earnestly.” -- Buddha
How to shift “paradigms”:
• Identifying negative thoughts/beliefs about your
health.
• Challenging those thoughts/beliefs.
• Adapting thought patterns and behaviors to
more effective ways of thinking / behaving.
Mastering “The New Normal”
Tasks to Master:
• Setting realistic expectations for self and others.
• Learning to set healthy boundaries for self and
others.
• Learning to communicate with difficult friends &
family (and acquaintances who think they are
“helping”).
• Finding and using resources that will help in the
journey ahead.
Mastering “The New Normal”:
Realistic Expectations
• Set realistic expectations with self:
–
–
–
–
Let go of what you use to be able to do.
Set priorities- Self, family, exercise, friends, work, etc.
Educate family/friends about current energy limits.
Enlist them is helping you set realistic goals.
• Set realistic expectations with others:
– You can not be the “fixer” for everyone.
– Discuss priorities with important people and ask them
to help with communicating their expectations.
– Sometimes, you have to JUST SAY NO!
Mastering “The New Normal”: Setting
Healthy Boundaries
• Energy: 100 units of energy for a 1000 unit day!
– Break tasks down. Complete over a few days if
necessary.
– Six 15-minute blocks of time, which limits ante-grade
pain, is better than an hour at a time and pain for the
next two days.
– Ask for help AND THEN LET PEOPLE HELP!
• Pacing: Time-limited versus task completion.
– Let go of perfectionism and unhealthy expectations.
– Stop the “I USE to be able to …” statements.
When flares happen, relax & nurture yourselfDON’T PUSH THROUGH THE PAIN!
Mastering “The New Normal”:
Communication Techniques
• How to communicate with difficult
friends/family/acquaintances (who think they are
“helping”).
– Keep an open mind- it may actually be good
advice.
– If appropriate, let them know you already have a
treatment plan developed with your health care
team.
– If they are overly persistent, be gentle yet firm
with your decline of their “advice”.
Distraction works
Mastering “The New Normal”:
Communication Techniques (cont.)
– For those who just don’t know when to stop:
• Express your feelings- “I feel frustrated/ invalidated/irritated
when you…”
• Be patient if possible. Don’t argue, but redirect the
conversation- “Be that as it may, I feel…”
• Use an easy manner. Manners and humor can sometimes
diffuse tense issues- “Interesting, I will ask my health care
team about that.” Optional: “NOT!” (and don’t forget to flash
that charm school smile!)
– If all else fails, end the conversation• “While I thank you for your concern, my health care team and I
have discussed the best treatment options for me and we are
doing them.” –then firmly change the subject or walk away.
Mastering “The New Normal”:
Resource List
• Resources that may help in the journey ahead:
– Websites:
• The Fibromyalgia Information Foundation: ww.myalgia.com
• The National Fibromyalgia Association: www.fmaware.org
– Books: “The ”Complete” Idiots Guide to Fibromyalgia- Lynne
Matallana
– Magazines: FM AWARE
– FM Support Groups- see flyer
– FM-friendly exercise group
Thank you for your attention!
What is Wrong With My
Exercise Program?
Kim Dupree Jones PhD, FNP
FIF
Ten Things You Should Never Say to
Someone with Fibromyalgia
1.
2.
"Well, hey, look on the bright side… At least you don't have cancer!"
“We all start to ache when we get older. Cardio-combat classes would
rev you back up."
3. “You wouldn't have this if you just lost a few pounds."
4. "Is fibromyalgia a real disease? Maybe if you relaxed more…"
5. “You just need some vitamins."
6. "You should probably leave your husband and see if your fibromyalgia
goes away."
7. "May I have some of your Vicodin? I could really use one right now for
my headache."
8. "You should move. There must be toxins in your house making you
sick."
9. "My neighbor has fibromyalgia and she works everyday. She says it
takes her mind off the pain…“
10. “But you look OK”
Static
Contractions of Infraspinatus Muscle
Control (n=11)
(ISM) FM Patient (n=10)





Standard Doppler evaluation of ISM typically shows no/small vessel perfusion. Administration of
ultrasound contrast media (Levovist) allows visualization of muscle vascularity
No differences in resting vascularity of ISM between FM and control subjects
During static contraction - no detectable vascularity in FM most patients (<0.002)
After dynamic contractions - reduced vascularity in FM patients (<0.001)
Normal vascularity in the non-contracting deltoid muscle of FM patients
Elvin et al. Eur J Pain. 2006;10:137-144.
Exercise in FM Can Either Help or Hurt
• At least 59 FM intervention studies to date have used aerobics, strength
and flexibility training, balneotherapy, most recently balance training
• Earlier studies used higher doses of exercise and resulted in greater fitness
improvements but worsening symptom scores
• Physical functioning, fitness, fatigue, mood, stiffness, sleep and selfefficacy generally improve more than pain
• Exercise maintenance may improve with social support and supervision
• FM symptom relief may precede fitness improvement
• As of last month, we have our 1st exercise intervention in children with FM
Jones 2007, Health Care & QOL: Busch 2008, Cochrane Database Reviews
How to Overcome Postures
that Worsen Pain
•
•
•
•
Evaluate your posture in a mirror
Where are your hands when standing?
Are your shoulders pulled up and forward?
Is your head pulled forward?
Pain Postures
Exercises to Overcome Pain Postures
Stretch Your Anterior Chest
Exercises to Overcome Pain Postures
Strengthen Your Upper Back
Am I Afraid I Will Fall While Exercising?
• This is a realistic fear. People with FM fall 6x more than
people without FM, and balance is challenged.
• However, deconditioning will further your fall risk.
• A new OHSU balance study will be enrolling shortly.
Balance Confidence
103
98
93
Control = 98.28%
88
FM = 76.63%
83
78
p<.001
n=70
73
68
ABC
Jones , in press, 2008, J of Clin Rheum
How to Minimize Your Risk of
Falling During Exercise
• Learn what ‘well balanced’ feels like. FM gives your body
inaccurate information about the location of your center of
gravity.
• Exercise from a chair
• Transition slowly between positions (for example, lift your neck up
last, to minimize dizziness and reduce neck pain)
• Avoid prolonged motionless standing
• Avoid pivot turns
• Stretch your heel cords
• Gain muscle strength, especially in your hips and knees
• Balance and strength DVD from myalgia.com
What is Your Current Activity Level?
• Think of exercise like a medication. If the dose is too low, you will
get little or no benefit. If it is too high, you’ll get side effects.
• A guiding principle for both medication AND exercise: START LOW,
GO SLOW
• To determine your “activity level”, keep a diary for 24 hours. How
much are you seated or in bed? How much are you standing or
moving?
• Try a 30 second chair stand test at home
What is Your Activity Dose is too High?
• Use fatigue management techniques
• Conserve energy in activities of daily living to save your energy for
exercise (sit while showering or brushing your teeth, use timebased pacing, park near entrances)
• Consider a hairstyle that doesn’t require a daily shower, or
prolonged styling time with your arms lifted overhead)
• Stretching and relaxation DVD from myalgia.com
• Rest in neutral postures several times daily
Example of a Neutral Posture
Balancing Activity with Rest
Time-Based Pacing
Activity –> Rest –> Activity –> Rest
Gil et al. In Chronic Pain (France et al. Eds). 1988. American
Psychiatric Press
Is Your Activity Dose Too Low?
Why? Do you need:
• Access to better medications to control your symptoms?
• Access to a bathroom during exercise due to irritable bowel or
irritable bladder?
• Access to an exercise class that is free from fragrance due to multiple
chemical sensitivity or simply enhanced awareness of smells?
• Access to an exercise program that understands your current
limitation, despite how healthy you look?
• In the past have you been more likely to exercise with a group, or
individually? In the water, or on land?
• Gentle aerobics DVD from myalgia.com
Exercisers In Research Classes at OHSU:
Minimize Eccentric Work and Repetition
Is Your Weight Making it Difficult
for you to Exercise?
• FM symptom severity is not clearly correlated with baseline
weight/BMI in multiple studies.
• Still, symptoms do improve with weight loss
• There is no single fibromyalgia diet yet
• Look for a dietary intervention, designed for you individually, to
help treat the following: obesity, celiac disease, IBS, constipation,
GERD, and food allergies
• Consider limiting unbound glutamate and food additives in your
diet
Kindler, Holmes & Jones, in press, 2008, NA Rheum Clinics
Living Foods / Raw Food Diet
Resources
Books:
• Yoga for Fibromyalgia: Move, Breathe, and Relax to Improve Your Quality of Life,
Shoosh Lettick Crotzer, Rodmell Press Yoga Shorts, 2008
• Fibromyalgia: Simple Relief Through Movement, Stacie L. Bigelow, Wiley, 2000
• Fallproof: A Comprehensive Balance and Mobility Training Program, Debra J. Rose,
Human Kinetics Publishers, 2003
• The Pain Survival Guide: How to Reclaim Your Life, Dennis C. Turk, APA Lifetools,
2005
• Healing Fibromyalgia, David H. Trock, Wiley, 2007
• The Complete Idiot’s Guide to Fibromyalgia, Lynne Matallana, Alpha, 2009
• The New Rules of Posture: How to Sit, Stand, and Move in the Modern World, Mary
Bond, Healing Arts Press, 2007
More Resources
Video/DVD:
• Balance & Strength - www.myalgia.com
• Stretching & Relaxation - www.myalgia.com
• Gentle Aerobic Exercise - www.myalgia.com
• Yoga Back Care Basics, Rodney Ye - www.amazon.com
Web Resources:
• A Fibromyalgia Patients Guide to Exercise - www.myalgia.com/exercise
• Everyday Flexibility Moves - www.myalgia.com/exercise
• Functional Fitness - www.myalgia.com/excercise
• NFA - www.fmaware.org (type exercise in the search engine)
• Fibromyalgia Network - www.fmnetnews.com/resources-daily-exercise
• Pain Free Radio with host Pete Egoscue - http://talkradio1370am.com/PainFree-Radio-with-Pete-Egoscue/298761
Ten Ways to
Tame your Fibromyalgia
Lindsay L. Kindler
Clinical nurse specialist
FIF
Self Care
• Make “you” a priority
• Schedule in time for yourself
• Care for yourself as well as you
others
• Give yourself permission
care for
www.selfcareadvocacy.org
Creative Problem Solving
• Modify daily activities
• Make your environment work
for you
• Trade favors
Pace Your Activities
• Alternate physically demanding activities with
more restful activities
• Break large jobs into smaller ones
• Plan, be deliberate
• Start where you are and keep progressing
Managing Your Sleep
• Sleep schedule
• Sleep environment
• Pre-bedtime routine
• Your own sleeping space
www.dreamsoundtracks.com
Tame Your Stress
• What helps you unwind?
• Don’t “should” on yourself
• Investigate your self talk
www.thecomicshop.com
• Practice saying “no”
Relaxation
•
•
•
•
•
Progressive muscle relaxation
Guided imagery
Meditation
Passive disregard for thought
Deep breathing
www.thespiraltree.com
Pain Flares
• Prevention of pain flares
• Develop a flare plan
• Share your flare plan
with others
www.research.unc.edu
Peripheral Pain Generators
• Non-fibromyalgia sources of pain impact your
fibromyalgia
• Peripheral pain generators often respond to
therapies that your FM does not respond to
www.pioneerpandg.com
Manage Fibro Fog
• Work on problems that can worsen fibro fog
–
–
–
–
Sleep
Pain
Depression
Stress
• Use tools to maintain your
sanity
– One calendar for all activities
– Elicit others to help
Sketchedout.files.wordpress.com
How to Get Your Health
Insurance Company to Do
What You Need It To Do
Rae Marie Gleason
Executive Director
National fibromyalgia Association
NFA & Patient Resources
• Founded in 1997 by Lynne Matallana, a
fibromyalgia patient
Our Mission:
To develop and execute programs dedicated to
improving the quality of life for people with
fibromyalgia.
NFA & Patient Resources
• Resources:
– Website: www.FMaware.org
– FAME (Fibromyalgia Awareness Means Everything)
Meetings
– Fibromyalgia AWARE Magazine
NFA’s Access to Care Survey
Early 2008
• NFA sent email requests for
people with FM to share
experiences with their health
insurance providers
• More than 1,000 people
responded most relating
insurance complaints
National Association of Insurance Commissioners
Top 5 reasons why consumers filed formal
complaints against their insurance carriers in
2007:
1. Delay in claims handling
2. Denials of claims
3. Unsatisfactory settlement offers
4. Policy cancellation
5. Premium/insurance rates escalation
“More often than not, claims are
deemed unjustified”
In 2007 of 4,915 complaints
made in Texas, 78% were denied
because actions of the insurance
provider were found to be within
the provisions of the health plan.
What Can Patients Do?
• Realize there is a partnership between you
and your insurance carrier
• Take responsibility for your health care and
communication between you and your carrier
• Know your rights and what resources are
available to help you navigate the insurance
maze
Groundwork for a Successful
Relationship
1. Understanding the Plan
2. Know your Broker
3. Request an Advocate (or case manager)
Before You Need One
4. Find a Medical Mentor/Trusted Advisor
5. Seek out Financial Counseling
1. Understand the Plan
• Choice of provider
• Out-of-pocket costs
• Paperwork you need to
complete to ensure bills are
paid
• Your responsibility to
understand policy
limitations
1. Understand the Plan
• Whether the plan makes
exceptions that you can take
advantage of
• It is your responsibility to
keep up on any changes in
your policy
– Ex: through the plans website,
email/hardcopy
communications received from
your carrier)
2. Know your Broker
• Most employer or group plans have a broker
available to answer questions
• Establish a relationship before your need him
or her
• When you need help, your name may stick out
on a long list of messages to respond to
• Can use to find out if your plan has a preapproved list of services for conditions like FM
3. Request an Advocate (or case
manager) Before You Need One
• Find out your plan’s criteria – some allow
advocate coverage for chronic conditions
• Advocates act as conduits between the plan
and patient
• Can help to facilitate payments for complex or
unique cases
4. Find a Medical Mentor/Trusted Advisor
• Could be a friend, relative or clinician
• To help decipher insurance bills, accompany
you to doctor visits, help make decisions
about your care
• When you live with a chronic pain condition, it
is difficult to make good decisions
• Can make the difference between good care
and the best care possible
5. Seek out Financial Counseling
• You have a legal right to financial counseling
from any healthcare organization where you
may receive care
– Under Health Insurance Portability and
Accountability Act (HIPPA)
• Contact finance or patient accounting
department of any hospital (or manager of
your physician’s office)
5. Seek out Financial Counseling
• They are not responsible by law to provide
you care without payment
• They are responsible by law to provide you
with options for payment of your bill
After Your Provider Recommends Treatment
1.
2.
3.
4.
5.
6.
Validate your care plan, especially for chronic conditions
like fibromyalgia
Run any physician treatment plan by your broker for
approval prior to initiation
Get it in writing!
Communicate any special requirements to your advocate
Make sure your provider has current insurance
information
Always request a copy of your records
1. Validate your care plan - especially for
chronic conditions like fibromyalgia
• Get at least one 2nd opinion to help with
questions about extent or type of treatment
recommended
• Discussion with your PCP about 2nd opinion
should be positive and help strengthen that
important relationship
2. Run any physician treatment plan by
your broker for approval prior to
initiation
3. Get it in writing!
• Get signed agreement to treatment regimen
in writing from the plan representative
• If that fails, then your medical mentor or
broker can use the plan’s written policies to
identify provisions to support payment for
services
4. Communicate any special requirements
to your advocate
• Care you need that can only be provided by
non-covered hospital or physician
• Any special needs you have should qualify you
for an advocate
• Make certain advocate (or medical mentor) is
assigned to your case
5. Make sure your provider has current
insurance information
• Forgetting to notify your HCP about any changes in your
plan can result in denial of bills or major delays in
payment
• You are ultimately responsible for notification of changes
• Inform your HCP office immediately regarding any
changes
• In addition to conversation by phone or in person – email
or mail the information to help you maintain a written
record of the information
6. Always request a copy of your records
• If your insurance company is contemplating
denial of coverage and is having a difficult
time securing your records from your HCP,
… having a copy of your information
will
show you received the services which
will
help your advocate dispute the
denial more easily.
If Your Insurance Plan Isn’t Living Up To Its
Obligation
1.
2.
3.
4.
5.
6.
Turn to your broker - first line of defense
Use your plan relationship - might be someone besides
broker
If you receive a request from your plan, respond to it ASAP
Examine Explanation of Benefits Statement (EOBs)
File an appeal and/or complaint - broker and/or advocate
can assist you
Involve non-profit resource organizations
1. Turn to your broker – first line of
defense
2. Use your plan relationship – might
be someone besides broker
3. If you receive a request from
your plan respond to it ASAP
• Might be used to stall process by plan
• Regardless of legitimacy of request – plan
representative will not proceed until you
respond to request
4. Examine Explanation of Benefits Statement
*** By law you must receive an EOB whenever bill is rejected.
It will include:
–
–
–
–
–
–
–
Provider name, date of service, service provided
Provider’s charge for service
Copayment, amount payable after deductibles
Explanation of denial
Telephone number and address where you may obtain clarification
Information on how to file an appeal of a denial
If any information is inaccurate, report it to the company &
physician
5. File an appeal and/or complaint – broker
and/or advocate can assist you
• Your company has a process for filing complaints
internally
• You can follow the appeal process outlined in your EOB
• Can simultaneously file complaint with your state’s
department of health insurance – either general or
specific that provides detail of your denial
• Can consistently speak to or email to ensure followthrough
5. File an appeal and/or complaint – broker
and/or advocate can assist you
• Most states have hotlines manned by state employees
who are there to help you
• Identify one individual that you can consistently speak
to or email to ensure follow-through
6. Involve non-profit resource organizations
• Patient Advocacy Foundation
– dedicated to “safeguarding patients through
effective medication, assuring access to care,
maintenance of employment and preservation of
their financial stability relative to their diagnosis of
life-threatening OR debilitating diseases
6. Involve non-profit resource organizations
• Offers some free access to case managers and
web-based helpline
• Last resort – contact patient advocate firms
who charge a fee to represent you, but are
usually successful. Many work out settlements
with insurance companies that minimizes or
eliminates any additional costs to the patient
... TO SUM UP!
• Be Proactive! If you don’t have the energy, rely
on your team made up of your PCP, patient
advocate and medical mentor to help you.
Keep good records and build relationships in the
plan with your broker and healthcare team.
Use your pro-activity and organizational skills to
hold others accountable.
Thank you
Thank you for supporting
our research efforts
F I F
www.myalgia.com