Fibromyalgia Information Foundation Fall Conference 2008

Fibromyalgia Information Foundation Fall Conference 2008
F I F

New developments in fibromyalgia research and treatment
Robert Bennett MD, FRCP, FACP, MACR F I F

Some of the FM drug studies that are underway or completed
ACTIVE STUDIES Ultracet * Eszoplicone Calcitonin Reboxetine * Quetiapine Xyrem * Etoricoxib Rotigitone * Armodafinil Nabilone Neurotropin Fluoxetine Naltrexone Amitryptiline COMPLETED STUDIES 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, Lyrica (pregabalin) FDA approved indications: Partial onset seizures Post herpetic neuralgia Fibromyalgia 2. June 16, Cymbalta (duloxetine) FDA approved indications: Depression Diabetic neuropathy Generalized anxiety disorder Fibromyalgia

Pregabalin - Improvement in weekly mean pain scores
Change from baseline in LS mean pain score Treatment Week Arnold et al. EULAR 2007, Barcelona, Spain, June 2007.

Pregabalin - Improvement in weekly mean pain scores
Placebo response Change from baseline in LS mean pain score Treatment Week Arnold et al. EULAR 2007, Barcelona, Spain, June 2007.

Pregabalin Adverse Events
Nocebo response AEs listed above are 10 most common among all pregabalin-treated patients AEs most commonly leading to DCs, ≥1% of pregabalin-treated patients *Due to all-cause AEs Arnold et al. EULAR 2007, Barcelona, Spain, June 2007. 7

Duloxetine - Improvement in weekly mean pain scores
0.0 * † Placebo Duloxetine 60 mg qd -0.5 Duloxetine 60 mg bid -1.0 -1.5 Change from baseline in LS mean pain score -2.0 -2.5 -3.0 -3.5 2 4 6 8 10 12 Week Arnold LM et al. (2005), Pain 119(1-3):5-15

Duloxetine - Improvement in weekly mean pain scores
0.0 * † -0.5 Placebo response -1.0 -1.5 Change from baseline in LS mean pain score -2.0 -2.5 -3.0 -3.5 2 4 6 8 10 12 Week Arnold LM et al. (2005), Pain 119(1-3):5-15

Duloxetine: Adverse Events
† 45 Nocebo response 40 † 35 Placebo (N=120) 30 Duloxetine 60 mg qd (N=118) % of Patients 25 * Duloxetine 60 mg bid (N=116) * 20 † * 15 * * † 10 * * * * * * * 5 Nausea Diarrhea Anorexia Dry Mouth Constipation Somnolence Hyperhidrosis Feeling Jittery Nervousness Nasopharyngitis Decreased Appetite Arnold LM et al. (2005), Pain 119(1-3):5-15 10

Are the placeobo and nocebo response for real?
Yes they are for real

4. Descending modulation
Anatomy of pain 3. Brain 4. Descending modulation In order to consider the pathophysiology basis of chronic pain will analyze the changes that occur at various levels of the central nervous system; namely the periphery, the spinal cord, the brain and the descending tracks from the midbrain. 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% 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 Codeine + APAP 55 47 4 Propoxyphene + APAP 54 8 Ibuprofen 51 87 36 Tramadol + APAP 50 27 Tramadol 46 13 Naproxen 39 66 20 Acetaminophen 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 R. ant. cingulate Finding: About 1/3 of FM patients have nearly maximal occupation of opioid receptors 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?

Depression is associated with low brain levels of monoamines
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 Hippocampus Hypothalamus Nor-epinephrine: Locus coeruleus Serotonin: Raphe nucleus Sleep center Spinal cord

Linking depression and pain Increased pain susceptibility
Reduced serotonin / norepinephrine Linking 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

4. Descending modulation
Anatomy of pain 3. Brain 4. Descending modulation In order to consider the pathophysiology basis of chronic pain will analyze the changes that occur at various levels of the central nervous system; namely the periphery, the spinal cord, the brain and the descending tracks from the midbrain. 1. Peripheral tissues 2. Spinal cord

N Engl J Med 2005;352: 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 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 CYP2D6*5 CYP2D6*9 low CYP2D6*10 CYP2D6*17 About 10% of Caucasians have low CYP2D6 activity

Individualize drug dosing based on metabolic profiling of CYP variants
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

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 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: 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
"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." “You wouldn't have this if you just lost a few pounds." "Is fibromyalgia a real disease? Maybe if you relaxed more…" “You just need some vitamins." "You should probably leave your husband and see if your fibromyalgia goes away." "May I have some of your Vicodin? I could really use one right now for my headache." "You should move. There must be toxins in your house making you sick." "My neighbor has fibromyalgia and she works everyday. She says it takes her mind off the pain…“ “But you look OK” Fibromyalgia (FM) is a common chronic widespread pain condition.1 Patients with FM may experience hyperalgesia and allodynia. Hyperalgesia is characterized by increased intensity and prolonged duration of pain. Allodynia is pain that results from nonnoxious stimuli2 In addition, Wolfe et al demonstrated that sleep disturbances, fatigue, and morning stiffness are present in >75% of FM patients3 Although the underlying cause of FM has not been established, recent data suggest that alterations of the central nervous system (CNS) may contribute to the chronic, widespread pain2,4,5 References: 1. Burckhardt CS, Goldenberg D, Crofford L et al. Guideline for the Management of Fibromyalgia Syndrome Pain in Adults and Children. APS Clinical Practice Guidelines Series, No.4. Glenview, Ill: American Pain Society; 2005. 2. Henriksson KG. Fibromyalgia – from syndrome to disease. Overview of pathogenetic mechanisms. J Rehabil Med. 2003;(suppl 41):89-94. 3. Wolfe F, Smythe HA, Yunus MB, et al. The American College of Rheumatology 1990 criteria for the classification of fibromyalgia. Report of the Multicenter Criteria Committee. Arthritis Rheum. 1990;33: 4. Staud R, Rodriguez ME. Mechanisms of disease: pain in fibromyalgia syndrome. Nat Clin Pract Rheumatol. 2006;2:90-98. 5. Gracely RH, Petzke F, Wolf JM, Clauw DJ. Functional magnetic resonance imaging evidence of augmented pain processing in fibromyalgia. Arthritis Rheum. 2002;46:

Blood Flow after Dynamic and During Static Contractions of Infraspinatus Muscle (ISM)
Control (n=11) FM Patient (n=10) Contrast doppler ultrasound revealed reduced blood flow to muscles during contraction in FM patients This study aimed to investigate if contrast enhanced ultrasound imaging of muscular blood flow during and following exercise could detect alterations in vascularity in FM patients (N=10) vs controls (N=10). The subjects were seated in a chair with their arms resting in the lap. They were instructed to perform 10 standardized dynamic contractions (outward rotation in the shoulder). This was done with their right elbow in a 90° flexion and their shoulder in a neutral position, the intention being to contract the infraspinatus muscle (ISM) in an isolated fashion. One end of a 1-m REP Band (DeRoyal, Sweden) was firmly attached to a fixed point, and the other end was attached with a loop to the subjects’ right hand. The band was stretched but not elongated in the neutral position. During the dynamic task, the subjects were instructed to perform a 45 outward rotation in their shoulder, thus elongating the band 20–25 cm, corresponding to a maximal load of 0.4–0.5 kg. The REP Band was chosen since it gives a linear relation between force and extension, allowing a smooth progressive increase in resistance. The outward rotations of the arm were performed 10 times, with one rotation every 2s Following the contractions the subjects were asked to rate the highest perceived intensity of pain and degree of exertion during the contraction period on a 100-mm visual analog scale (VAS) anchored by ‘‘no pain/exertion’’ on the left end and ‘‘worst imaginable pain/exertion’’ on the right end Doppler evaluation of ISM during static contraction in healthy control and FM patient typically shows no/small vessel perfusion. Administration of ultrasound contrast media allows visualization of the muscular tissue vascularity. No flow during contraction was detected in the FM patient (5 cases), but the FM patient exhibited normal muscular vascularity in the noncontracting deltoideus muscle in the upper right hand corner 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: References: 1. Elvin A, Siosteen AK, Nilsson A, Kosek E. Decreased muscle blood flow in fibromyalgia patients during standardised muscle exercise: A contrast media enhanced colour doppler study. Eur J Pain. 2006;10: 45

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.

Balance Confidence Balance confidence scale is a 16 item scale that asks for level of confidence that a participant can perform various activities The 6 items that best predicted poor balance were Reaching while on tiptoes Walking up or down stairs Reaching while standing on a chair Walking on a slippery floor Being bumped in a while walking in a crowd Using an escalator without using a handrail Scores less than 68% indicated low mobility p<.001 n=70 Jones , in press, 2008, J of Clin Rheum 52

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

Balancing Activity with Rest
Time-Based Pacing Activity –> Rest –> Activity –> Rest Gil et al. In Chronic Pain (France et al. Eds) American Psychiatric Press 57

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
Living Foods Diet is a raw vegan diet including vegetables roots, fruits, berries, germinated seeds, cereals, sprouts and nuts. It excludes coffee, tea, alcohol or table salt. Concerns: lack of B12, D and Calcium, boredom, difficulty with long term compliance, inability to eat restaurant or prepackaged foods. 61

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 - Gentle Aerobic Exercise - Yoga Back Care Basics, Rodney Ye - Web Resources: A Fibromyalgia Patients Guide to Exercise - Everyday Flexibility Moves - Functional Fitness - NFA - (type exercise in the search engine) Fibromyalgia Network - Pain Free Radio with host Pete Egoscue -

Ten Ways to Tame your Fibromyalgia
Lindsay L. Kindler Clinical 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 permission Acknowledge – self care takes time.

Creative Problem Solving
Modify daily activities Make your environment work for you Trade favors Modify daily activities: TM’s belt and barkdust stories; making the bed while in it Environment: Recliners in yard, sit in shower Trade favors: Trade cooking responsibilities for yardwork

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

Your own sleeping space
Managing Your Sleep Sleep schedule Sleep environment Pre-bedtime routine Your own sleeping space Sleep environment: include sleep positioning Pre-bedtime routine: include pain mgmt strategies

Tame Your Stress What helps you unwind? Don’t “should” on yourself
Investigate your self talk Practice saying “no” Take time at the end of the workday to just rest before you start the evening responsibilities

Relaxation Progressive muscle relaxation Guided imagery Meditation
Passive disregard for thought Deep breathing Relaxation can have significant effects on the physical and stressful components of fibromyalgia. Relaxation strategies such as these help to calm the nervous system, reduce muscle tension, improve blood flow and oxygenation throughout the body, and decrease heart rate and blood pressure.

Pain Flares Prevention of pain flares Develop a flare plan
Share your flare plan with others Prevention: Know the factors that aggravate your pain. Pre-plan for these activities: rest periods, pre-medicate, arrange schedule for activity. Develop the flare plan when you are not in a flare. This will allow you to think clearly about what are your best pain management strategies. Flare strategies might be ones that you don’t use as frequently but work pretty well. Know that the flare will subside.

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 Even if heat, ice, acupuncture, anti-inflammatories, etc. do not seem to directly help your fibromyalgia, they might decrease the pain you experience from arthritis, abdominal pain, or other ailments.

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 Family calendar Explain difficulty to family, ask for requests in writing, have family remind you of important events Decrease chaos/clutter in your environment. Create a calm space where you can settle your mind. 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
Website: FAME (Fibromyalgia Awareness Means Everything) Meetings Fibromyalgia AWARE Magazine

NFA’s Access to Care Survey
Early 2008 NFA sent 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
Understanding the Plan Know your Broker Request an Advocate (or case manager) Before You Need One Find a Medical Mentor/Trusted Advisor 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, /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 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 Treatment
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 – 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
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 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 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

Fibromyalgia Information Foundation Fall Conference 2008

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