Fibromyalgia Information Foundation

Fall Conference 2008

www.myalgia.com

New developments in fibromyalgia research and

treatment

Robert Bennett MD, FRCP, FACP, MACR

F I F

COMPLETED STUDIES

DuloxetineMilnacipranDesvenlafaxinePregabalin *GabapentinD-riboseMK-677 *RopinirolePyridostigmine *Pramipexole *Hydrocortisone *LevitiracetamLacosamideCasopitant

ACTIVE STUDIES

Ultracet *EszopliconeCalcitoninReboxetine *QuetiapineXyrem *EtoricoxibRotigitone *ArmodafinilNabiloneNeurotropinFluoxetineNaltrexoneAmitryptiline

Some of the FM drug studies that are underway or completed

1. June 21, 2007 - Lyrica (pregabalin)

FDA approved indications:Partial onset seizuresPost herpetic neuralgiaFibromyalgia

Two drugs currently FDA approved for fibromyalgia

2. June 16, 2008 - Cymbalta (duloxetine)

FDA approved indications:DepressionDiabetic neuropathyGeneralized anxiety disorderFibromyalgia

-3

-2

-1

0

1 2 3 4 5 6 7 8 9 10 11 12 13 EP

PlaceboPregabalin 300 mg/dPregabalin 450 mg/dPregabalin 600 mg/d

Arnold et al. EULAR 2007, Barcelona, Spain, 13-16 June 2007.

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Pregabalin - Improvement in weekly mean pain scores

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Arnold et al. EULAR 2007, Barcelona, Spain, 13-16 June 2007.

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Pregabalin - Improvement in weekly mean pain scores

Placebo response

Pregabalin Adverse Events

0% 5% 10% 15% 20% 25% 30% 35% 40% 45% 50%

Discontinuations*

Peripheral edema

Fatigue

Constipation

Dry mouth

Nausea

Vision blurred

Headache

Weight gain

Somnolence

Dizziness

PBO 300 mg/d

450 mg/d 600 mg/d

*Due to all-cause AEs

7Arnold et al. EULAR 2007, Barcelona, Spain, 13-16 June 2007.

Nocebo response

Placebo

Duloxetine 60 mg bid

Duloxetine 60 mg qd

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Arnold LM et al. (2005), Pain 119(1-3):5-15

Placebo response

Duloxetine: Adverse Events

Arnold LM et al. (2005), Pain 119(1-3):5-15

Placebo (N=120)

Duloxetine 60 mg bid (N=116)Duloxetine 60 mg qd (N=118)

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Nocebo response

Are the placeobo and nocebo response for real?

Yes they are for real

1. Peripheral tissues 2. Spinal cord

3. Brain

4. Descending modulation

Anatomy Anatomy of painof pain

What treatments do FM patients really use?

InterventionEffectiveness(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%

NFA internet survey 2005 - Interventions

Bennett et al BMC Musculoskeletal Diseases 2007, 8:27

InterventionEffectiveness(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%

NFA internet survey 2005 - Interventions

Bennett et al BMC Musculoskeletal Diseases 2007, 8:27

NFA internet survey 2005 – Analgesic use

Bennett et al BMC Musculoskeletal Diseases 2007, 8:27

The most helpful drugs were all “opioids”

The Journal of Neuroscience, September 12, 2007 • 27(37):10000 –10006

Neurobiology of Disease Decreased Central-Opioid Receptor Availability in FibromyalgiaRichard E. Harris, Daniel J. Clauw, David J. Scott, Samuel A. McLean, Richard H. Gracely, and Jon-Kar Zubieta

PET Scanning

N. acumbens

L. amygdala

R. ant. cingulate

Harris et al. The Journal of Neuroscience 27(37):10000 –10006

μ-Opioid receptor availability in fibromyalgia

Finding:About 1/3 of FM patients have nearly maximal occupation of opioid receptors

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 painLinking depression and pain

Depression is associated with low brain levels of monoaminesSerotonin, nor-epinephrine and dopamine

Prefrontal cortexPrefrontal cortex

HippocampusHippocampus

Limbic systemLimbic system

HypothalamusHypothalamus

Spinal cordSpinal cordSpinal cordSpinal cord

Serotonin:Raphe nucleus

AmygdalaAmygdala

Sleep centerSleep center

Linking depression and painLinking depression and pain

Nor-epinephrine:Locus coeruleus

Increased pain susceptibilityIncreased pain susceptibilityIncreased pain susceptibilityIncreased pain susceptibility

Depressed Mood

Poor Concentration

Psychomotor Retardation

and Agitation

Loss of AppetiteLow Sex DriveLoss of Pleasure

InsomniaHypersomnia

Reduced serotonin / norepinephrineReduced serotonin / norepinephrineLinking depression and painLinking depression and pain

1. Peripheral tissues 2. Spinal cord

3. Brain

4. Descending modulation

Anatomy Anatomy of painof pain

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

Agitation or restlessnessNausea, vomiting and diarrheaConfusion , hallucinationsPoor coordination TachycardiaRapid changes in blood pressure SweatingHyper-reactive reflexesFeverSeizures Coma

Cause: excessive stimulation of serotonin receptors

Serotonin syndrome

Presentation:

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

Serotonin syndrome – implicated drugs

In some patients combinations of the following drugs can lead to a serotonin syndrome:

This risk depends on genetic make-up (CYP 450 genes)

18 families and 43 variants

Nomenclature: CYP1A1, CYP2D6, CYP3A4, etc.

Function: drug metabolism

Relevance: drug interactions

Variants are genetically determined

Variant Activity

CYP2D6*1 normal

CYP2D6*3 absent

CYP2D6*4 absent

CYP2D6*5 absent

CYP2D6*9 low

CYP2D6*10 low

CYP2D6*17 low

What you have always wanted to know about Cytochrome P450

About 10% of Caucasians have low CYP2D6 activity

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 less-than-expected effectiveness from their drug therapy

Individualize drug dosing based on metabolic profiling of CYP variants

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, PhDPsychiatric Mental Health Nurse Practitioner

F I F

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 yourself- DON’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

F I F

Ten Things You Should Never Say to Someone with Fibromyalgia

1. "Well, hey, look on the bright side… At least you don't have cancer!"2. “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”

Blood Flow after Dynamic and During Static

Contractions of Infraspinatus Muscle (ISM)Control (n=11) 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 self-efficacy 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.

68

73

78

83

88

93

98

103

ABC

Control = 98.28%

FM = 76.63%

Balance Confidence

p<.001n=70

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 time-based 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

Gil et al. In Chronic Pain (France et al. Eds). 1988. American Psychiatric Press

Time-Based Pacing

Activity –> Rest –> Activity –> Rest

Balancing Activity with Rest

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

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/Pain-Free-Radio-with-Pete-Egoscue/298761

More Resources

Ten Ways to Tame your Fibromyalgia

Lindsay L. KindlerClinical nurse specialist

F I F

Self Care

• Make “you” a priority

• Schedule in time for yourself

• Care for yourself as well as you care for others

• Give yourself permissionwww.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

• Practice saying “no”www.thecomicshop.com

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 otherswww.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 SurveyEarly 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 handling2. Denials of claims3. Unsatisfactory settlement offers4. Policy cancellation5. 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 Plan2. Know your Broker3. Request an Advocate (or case

manager) Before You Need One4. Find a Medical Mentor/Trusted Advisor5. 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

• 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)

1. Understand the Plan

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 pre-

approved 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 Treatment1. Validate your care plan, especially for chronic conditions

like fibromyalgia2. Run any physician treatment plan by your broker for

approval prior to initiation3. Get it in writing!4. Communicate any special requirements to your advocate5. Make sure your provider has current insurance information6. 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. Turn to your broker - first line of defense2. Use your plan relationship - might be someone besides

broker 3. If you receive a request from your plan, respond to it ASAP4. Examine Explanation of Benefits Statement (EOBs)5. File an appeal and/or complaint - broker and/or advocate

can assist you6. 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 follow-through

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

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