Presentation on theme: "Fibromyalgia Information Foundation Fall Conference 2008"— Presentation transcript:
1 Fibromyalgia Information Foundation Fall Conference 2008 F I F
2 New developments in fibromyalgia research and treatment Robert Bennett MD, FRCP, FACP, MACRF I F
3 Some of the FM drug studies that are underway or completed ACTIVE STUDIESUltracet *EszopliconeCalcitoninReboxetine *QuetiapineXyrem *EtoricoxibRotigitone *ArmodafinilNabiloneNeurotropinFluoxetineNaltrexoneAmitryptilineCOMPLETED STUDIESDuloxetineMilnacipranDesvenlafaxinePregabalin *GabapentinD-riboseMK-677 *RopinirolePyridostigmine *Pramipexole *Hydrocortisone *LevitiracetamLacosamideCasopitant
4 Two drugs currently FDA approved for fibromyalgia 1. June 21, Lyrica (pregabalin)FDA approved indications:Partial onset seizuresPost herpetic neuralgiaFibromyalgia2. June 16, Cymbalta (duloxetine)FDA approved indications:DepressionDiabetic neuropathy Generalized anxiety disorderFibromyalgia
5 Pregabalin - Improvement in weekly mean pain scores Change from baseline in LS mean pain scoreTreatment WeekArnold et al. EULAR 2007, Barcelona, Spain, June 2007.
6 Pregabalin - Improvement in weekly mean pain scores Placebo responseChange from baseline in LS mean pain scoreTreatment WeekArnold et al. EULAR 2007, Barcelona, Spain, June 2007.
7 Pregabalin Adverse Events Nocebo responseAEs listed above are 10 most common among all pregabalin-treated patientsAEs most commonly leading to DCs, ≥1% of pregabalin-treated patients*Due to all-cause AEsArnold et al. EULAR 2007, Barcelona, Spain, June 2007.7
8 Duloxetine - Improvement in weekly mean pain scores 0.0*†PlaceboDuloxetine 60 mg qd-0.5Duloxetine 60 mg bid-1.0-1.5Change from baseline in LS mean pain score-2.0-2.5-3.0-3.524681012WeekArnold LM et al. (2005), Pain 119(1-3):5-15
9 Duloxetine - Improvement in weekly mean pain scores 0.0*†-0.5Placebo response-1.0-1.5Change from baseline in LS mean pain score-2.0-2.5-3.0-3.524681012WeekArnold LM et al. (2005), Pain 119(1-3):5-15
11 Are the placeobo and nocebo response for real? Yes they are for real
12 4. Descending modulation Anatomy of pain3. Brain4. Descending modulationIn 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 tissues2. Spinal cord
14 NFA internet survey 2005 - Interventions Effectiveness(0-10 scale)UsePrescription sleep medications6.5± 2.752%Prescription pain medications6.3±2.466%Resting6.3 ±2.586%Heat modalities (warm water, hot packs)6.3 ±2.374%Prescription antidepressants6.2±2.863%Massage/reflexology6.1 ±2.843%Pool therapy6.0 ±3.026%Stretching5.4 ±2.662%Non-aerobic exercise (stretching,yoga)5.1±2.924%Relaxation/meditation5.1 ±5.547%Chiropractic manipulation5.1 ±3.030%Aerobic exercise5.0±3.032%Trigger point injections5.0 ±3.321%Bennett et al BMC Musculoskeletal Diseases 2007, 8:27
15 NFA internet survey 2005 - Interventions Effectiveness(0-10 scale)UsePrescription sleep medications6.5± 2.752%Prescription pain medications6.3±2.466%Resting6.3 ±2.586%Heat modalities (warm water, hot packs)6.3 ±2.374%Prescription antidepressants6.2±2.863%Massage/reflexology6.1 ±2.843%Pool therapy6.0 ±3.026%Stretching5.4 ±2.662%Non-aerobic exercise (stretching,yoga)5.1±2.924%Relaxation/meditation5.1 ±5.547%Chiropractic manipulation5.1 ±3.030%Aerobic exercise5.0±3.032%Trigger point injections5.0 ±3.321%Bennett et al BMC Musculoskeletal Diseases 2007, 8:27
16 NFA internet survey 2005 – Analgesic use Helpful (%)Ever usedUse nowHydrocodone + APAP754418Morphine70142Oxycodone + APAP67327MS Contin6551Methadone586Codeine + APAP55474Propoxyphene + APAP548Ibuprofen518736Tramadol + APAP5027Tramadol4613Naproxen396620Acetaminophen9435The most helpful drugs were all “opioids”Bennett et al BMC Musculoskeletal Diseases 2007, 8:27
17 PET ScanningThe Journal of Neuroscience, September 12, 2007 • 27(37):10000 –10006Neurobiology 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
18 μ-Opioid receptor availability in fibromyalgia N. acumbensL. amygdalaR. ant. cingulateFinding:About 1/3 of FM patients have nearly maximal occupation of opioid receptorsHarris et al. The Journal of Neuroscience 27(37):10000 –10006
19 What does this stuff really mean? FINDING: Some FM patients have more endorphins than healthy individuals and their endorphin receptors are fullCONSEQUENCE: These same patients will be relatively resistant to medications containing opioids
20 Why do doctors prescribe antidepressants, even when you’re not depressed?
21 Depression is associated with low brain levels of monoamines Linking depression and painDepression is associated with low brain levels of monoaminesSerotonin, nor-epinephrine and dopamine
22 Linking depression and pain Prefrontal cortexLimbic systemAmygdalaHippocampusHypothalamusNor-epinephrine: Locus coeruleusSerotonin: Raphe nucleusSleep centerSpinal cord
23 Linking depression and pain Increased pain susceptibility Reduced serotonin / norepinephrineLinking depression and painDepressed MoodPoor ConcentrationLoss of Appetite Low Sex Drive Loss of PleasurePsychomotor Retardation and AgitationInsomnia HypersomniaIncreased pain susceptibility
24 4. Descending modulation Anatomy of pain3. Brain4. Descending modulationIn 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 tissues2. Spinal cord
25 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
26 Serotonin syndrome Cause: excessive stimulation of serotonin receptors Presentation:Agitation or restlessnessNausea, vomiting and diarrheaConfusion , hallucinationsPoor coordinationTachycardiaRapid changes in blood pressureSweatingHyper-reactive reflexesFeverSeizuresComa
27 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 ginsengThis risk depends on genetic make-up (CYP 450 genes)
28 What you have always wanted to know about Cytochrome P450 18 families and 43 variantsNomenclature: CYP1A1, CYP2D6, CYP3A4, etc.Function: drug metabolismRelevance: drug interactionsVariants are genetically determinedVariantActivityCYP2D6*1normalCYP2D6*3absentCYP2D6*4CYP2D6*5CYP2D6*9lowCYP2D6*10CYP2D6*17About 10% of Caucasians have low CYP2D6 activity
29 Individualize drug dosing based on metabolic profiling of CYP variants The FDA-approved AmpliChip for analysis of CYP2D6 and CYP2C19, variants of CYP4501. 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 reactions4. Ultrarapid metabolizers. May experience either no effect or less-than-expected effectiveness from their drug therapy
30 You don’t have to wait 5 years Learn about fibromyalgia and help fellow sufferersAdopt a positive attitude, newer treatments are on the wayMaintain a regimen of gentle stretching and exerciseLearn to be kind to your bodyMaximize your “sleep hygiene”Give medications a chance (many need 3-4 weeks to work)
31 The “New Normal”: Thriving in the here and now! Rebecca Ross RN, PhDPsychiatric Mental Health Nurse PractitionerF I F
32 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
33 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.” -- BuddhaHow 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.
34 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.
35 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!
36 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.
37 When flares happen, relax & nurture yourself- DON’T PUSH THROUGH THE PAIN!
38 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”.
40 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.
41 Mastering “The New Normal”: Resource List Resources that may help in the journey ahead:Websites:The Fibromyalgia Information Foundation: ww.myalgia.comThe National Fibromyalgia Association:Books: “The ”Complete” Idiots Guide to Fibromyalgia- Lynne MatallanaMagazines: FM AWAREFM Support Groups- see flyerFM-friendly exercise group
43 What is Wrong With My Exercise Program? Kim Dupree Jones PhD, FNPF I F
44 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 ittakes her mind off the pain…““But you look OK”Fibromyalgia (FM) is a common chronic widespread pain condition.1Patients 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 stimuli2In addition, Wolfe et al demonstrated that sleep disturbances, fatigue, and morning stiffness are present in >75% of FM patients3Although 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 pain2,4,5References: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:
45 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 patientsThis 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 2sFollowing 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 endDoppler 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 cornerStandard Doppler evaluation of ISM typically shows no/small vessel perfusion. Administration of ultrasound contrast media (Levovist) allows visualization of muscle vascularityNo differences in resting vascularity of ISM between FM and control subjectsDuring 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 patientsElvin 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
46 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 trainingEarlier studies used higher doses of exercise and resulted in greater fitness improvements but worsening symptom scoresPhysical functioning, fitness, fatigue, mood, stiffness, sleep and self-efficacy generally improve more than painExercise maintenance may improve with social support and supervisionFM symptom relief may precede fitness improvementAs of last month, we have our 1st exercise intervention in children with FMJones 2007, Health Care & QOL: Busch 2008, Cochrane Database Reviews
47 How to Overcome Postures that Worsen Pain Evaluate your posture in a mirrorWhere are your hands when standing?Are your shoulders pulled up and forward?Is your head pulled forward?
49 Exercises to Overcome Pain Postures Stretch Your Anterior Chest
50 Exercises to Overcome Pain Postures Strengthen Your Upper Back
51 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.
52 Balance ConfidenceBalance confidence scale is a 16 item scale that asks for level of confidence that a participant can perform various activitiesThe 6 items that best predicted poor balance wereReaching while on tiptoesWalking up or down stairsReaching while standing on a chairWalking on a slippery floorBeing bumped in a while walking in a crowdUsing an escalator without using a handrailScores less than 68% indicated low mobilityp<.001n=70Jones , in press, 2008, J of Clin Rheum52
53 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 chairTransition slowly between positions (for example, lift your neck up last, to minimize dizziness and reduce neck pain)Avoid prolonged motionless standingAvoid pivot turnsStretch your heel cordsGain muscle strength, especially in your hips and kneesBalance and strength DVD from myalgia.com
54 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 SLOWTo 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
55 What is Your Activity Dose is too High? Use fatigue management techniquesConserve 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.comRest in neutral postures several times daily
57 Balancing Activity with Rest Time-Based PacingActivity –> Rest –> Activity –> RestGil et al. In Chronic Pain (France et al. Eds) American Psychiatric Press57
58 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
59 Exercisers In Research Classes at OHSU: Minimize Eccentric Work and Repetition
60 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 lossThere is no single fibromyalgia diet yetLook for a dietary intervention, designed for you individually, to help treat the following: obesity, celiac disease, IBS, constipation, GERD, and food allergiesConsider limiting unbound glutamate and food additives in your dietKindler, Holmes & Jones, in press, 2008, NA Rheum Clinics
61 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
62 ResourcesBooks:Yoga for Fibromyalgia: Move, Breathe, and Relax to Improve Your Quality of Life, Shoosh Lettick Crotzer, Rodmell Press Yoga Shorts, 2008Fibromyalgia: Simple Relief Through Movement, Stacie L. Bigelow, Wiley, 2000Fallproof: A Comprehensive Balance and Mobility Training Program, Debra J. Rose, Human Kinetics Publishers, 2003The Pain Survival Guide: How to Reclaim Your Life, Dennis C. Turk, APA Lifetools, 2005Healing Fibromyalgia, David H. Trock, Wiley, 2007The Complete Idiot’s Guide to Fibromyalgia, Lynne Matallana, Alpha, 2009The New Rules of Posture: How to Sit, Stand, and Move in the Modern World, Mary Bond, Healing Arts Press, 2007
63 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 -
64 Ten Ways to Tame your Fibromyalgia Lindsay L. KindlerClinical nurse specialistF I F
65 Self Care Make “you” a priority Schedule in time for yourself Care for yourself as well as you care for othersGive yourself permissionAcknowledge – self care takes time.
66 Creative Problem Solving Modify daily activitiesMake your environment workfor youTrade favorsModify daily activities: TM’s belt and barkdust stories; making the bed while in itEnvironment: Recliners in yard, sit in showerTrade favors: Trade cooking responsibilities for yardwork
67 Pace Your ActivitiesAlternate physically demanding activities with more restful activitiesBreak large jobs into smaller onesPlan, be deliberateStart where you are and keep progressing
68 Your own sleeping space Managing Your SleepSleep scheduleSleep environmentPre-bedtime routineYour own sleeping spaceSleep environment: include sleep positioningPre-bedtime routine: include pain mgmt strategies
69 Tame Your Stress What helps you unwind? Don’t “should” on yourself Investigate your self talkPractice saying “no”Take time at the end of the workday to just rest before you start the evening responsibilities
70 Relaxation Progressive muscle relaxation Guided imagery Meditation Passive disregard for thoughtDeep breathingRelaxation 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.
71 Pain Flares Prevention of pain flares Develop a flare plan Share your flare planwith othersPrevention: 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.
72 Peripheral Pain Generators Non-fibromyalgia sources of pain impact your fibromyalgiaPeripheral pain generators often respond to therapies that your FM does not respond toEven 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.
73 Manage Fibro Fog Work on problems that can worsen fibro fog SleepPainDepressionStressUse tools to maintain yoursanityOne calendar for all activitiesElicit others to helpFamily calendarExplain difficulty to family, ask for requests in writing, have family remind you of important eventsDecrease chaos/clutter in your environment. Create a calm space where you can settle your mind.Sketchedout.files.wordpress.com
74 How to Get Your Health Insurance Company to Do What You Need It To Do Rae Marie GleasonExecutive DirectorNational fibromyalgia Association
75 NFA & Patient Resources Founded in 1997 by Lynne Matallana, a fibromyalgia patientOur Mission:To develop and execute programs dedicated to improving the quality of life for people with fibromyalgia.
77 NFA’s Access to Care Survey Early 2008NFA sent requests for people with FM to share experiences with their health insurance providersMore than 1,000 people responded most relating insurance complaints
78 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
79 “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.
80 What Can Patients Do?Realize there is a partnership between you and your insurance carrierTake responsibility for your health care and communication between you and your carrierKnow your rights and what resources are available to help you navigate the insurance maze
81 Groundwork for a Successful Relationship Understanding the PlanKnow your BrokerRequest an Advocate (or case manager) Before You Need OneFind a Medical Mentor/Trusted AdvisorSeek out Financial Counseling
82 1. Understand the Plan Choice of provider Out-of-pocket costs Paperwork you need to complete to ensure bills are paidYour responsibility to understand policy limitations
83 1. Understand the PlanWhether the plan makes exceptions that you can take advantage ofIt is your responsibility to keep up on any changes in your policyEx: through the plans website, /hardcopy communications received from your carrier)
84 2. Know your BrokerMost employer or group plans have a broker available to answer questionsEstablish a relationship before your need him or herWhen you need help, your name may stick out on a long list of messages to respond toCan use to find out if your plan has a pre-approved list of services for conditions like FM
85 3. Request an Advocate (or case manager) Before You Need One Find out your plan’s criteria – some allow advocate coverage for chronic conditionsAdvocates act as conduits between the plan and patientCan help to facilitate payments for complex or unique cases
86 4. Find a Medical Mentor/Trusted Advisor Could be a friend, relative or clinicianTo help decipher insurance bills, accompany you to doctor visits, help make decisions about your careWhen you live with a chronic pain condition, it is difficult to make good decisionsCan make the difference between good care and the best care possible
87 5. Seek out Financial Counseling You have a legal right to financial counseling from any healthcare organization where you may receive careUnder Health Insurance Portability and Accountability Act (HIPPA)Contact finance or patient accounting department of any hospital (or manager of your physician’s office)
88 5. Seek out Financial Counseling They are not responsible by law to provide you care without paymentThey are responsible by law to provide you with options for payment of your bill
89 After Your Provider Recommends Treatment Validate your care plan, especially for chronic conditions like fibromyalgiaRun any physician treatment plan by your broker for approval prior to initiationGet it in writing!Communicate any special requirements to your advocateMake sure your provider has current insurance informationAlways request a copy of your records
90 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 recommendedDiscussion with your PCP about 2nd opinion should be positive and help strengthen that important relationship
91 2. Run any physician treatment plan by your broker for approval prior to initiation
92 3. Get it in writing!Get signed agreement to treatment regimen in writing from the plan representativeIf that fails, then your medical mentor or broker can use the plan’s written policies to identify provisions to support payment for services
93 4. Communicate any special requirements to your advocate Care you need that can only be provided by non-covered hospital or physicianAny special needs you have should qualify you for an advocateMake certain advocate (or medical mentor) is assigned to your case
94 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 paymentYou are ultimately responsible for notification of changesInform your HCP office immediately regarding any changesIn addition to conversation by phone or in person – or mail the information to help you maintain a written record of the information
95 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.
96 If Your Insurance Plan Isn’t Living Up To Its Obligation Turn to your broker - first line of defenseUse your plan relationship - might be someone besides brokerIf you receive a request from your plan, respond to it ASAPExamine Explanation of Benefits Statement (EOBs)File an appeal and/or complaint - broker and/or advocate can assist youInvolve non-profit resource organizations
98 2. Use your plan relationship – might be someone besides broker
99 3. If you receive a request from your plan respond to it ASAP Might be used to stall process by planRegardless of legitimacy of request – plan representative will not proceed until you respond to request
100 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 providedProvider’s charge for serviceCopayment, amount payable after deductiblesExplanation of denialTelephone number and address where you may obtain clarificationInformation on how to file an appeal of a denialIf any information is inaccurate, report it to the company & physician
101 5. File an appeal and/or complaint – broker and/or advocate can assist you Your company has a process for filing complaints internallyYou can follow the appeal process outlined in your EOBCan simultaneously file complaint with your state’s department of health insurance – either general or specific that provides detail of your denialCan consistently speak to or to ensure follow-through
102 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 youIdentify one individual that you can consistently speak to or to ensure follow-through
103 6. Involve non-profit resource organizations Patient Advocacy Foundationdedicated 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
104 6. Involve non-profit resource organizations Offers some free access to case managers and web-based helplineLast 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
105 ... 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.