Comments Subscribe Members

Startingat99cents SignIn

Strict opioids laws hit chronic pain

suerers hard

CRAIGF.WALKER/GLOBESTAFF

TanyaLussierdisplayedhermedicationatherhomeinLowell.

ByFeliceJ.Freyer GLOB E S TAFF J UN E 1 8, 201 6

JonathanRodistakeshishydrocodonepillssparingly,onlywhenthepainbecomes
unbearable.Hedoesntlikethewaythedrugfogshisbrain.Andlately,healso
needstoconservebecausenewfederalrulesmakeithardtogetarefill.

RodishasMarfansyndrome,ageneticconditionthataffectsconnectivetissueand
makeshiswholebodyhurt.Thepillsdullthepainforafewhours.Butnow,instead
1of5freearticles.Subscribenow
Tweet Share 90
ofjustcallinghispharmacywhenheneedsarefill,hehastomakethe30to45

 minutetrekfromWinthropintoBostontoseehisdoctor,amajorundertakingfora
Comments
manwhocanbarelyleavethehouseonbaddays.

IfeelsotrappedwhenIlookatmybottleandseesixpillsleft,saidRodis,whois
57.

ThisistheothersideofAmericaswaronopioids.

Asfederalandstateregulatorsrushtocurtailaccesstodrugsthathaveclaimed
thousandsoflives,therulestheyveenactedfallhardonpeoplewholegitimately
needrelieffrompain.Inanatmosphereofheightenedconcernaboutopioids,
patientsinpainfacereluctantdoctors,warypharmacists,andthefrequentdemand
toprovethattheyarenotaddicts.

Survey: Struggles for US

pain patients
Twothirdsofrespondentsreportgreater
difficultyobtainingopioidmedicationsandsay
theyfaceskepticismfrommedicalprofessionals.

Newrulesonopioidprescribing

TheInstituteofMedicineestimatedin2011that100millionUSadultssufferfrom
painthatneverends,oftentheresultofinjury,disease,ordysfunctionofthe
nervoussystem.Opioidsarenottheironlyoption.Manygetrelieffromother
drugs,suchasanticonvulsantsandantidepressantsdevices,suchasspinal
stimulatorsandregimens,suchasphysicaltherapyandmeditation.Rarelycan
theystopthepain,butinsteadpatientsassembleamosaicofremediestocarryon
withlife.Andforsome,opioidsareacriticalpiece.

TodayinMassachusetts,manypeoplearelosingaccesstothosecrucialdrugs,said
ClaireSampson,cochairwomanoftheMassachusettsPainInitiative,anadvocacy
1of5freearticles.Subscribenow
group.
Tweet Share 90

 Sampson,anurse,seestheevidenceattheWesternMassachusettspainclinic
Comments
wheresheworks,whichshesaidisfacinganinfluxofdesperatepainpatients.

Providersareturningtheirbacksonthem,Sampsonsaid.Theyreafraidof
consequencesfromthegovernment....Theyreafraidofhavingtheirlicenses
pulled.Theyreafraidofscrutiny.

RELATED:SurgeonGeneralvisitsBostoncliniconopioidepidemic
tour

Inmanycases,doctorsaremisinterpretingoroverreactingtonewfederalandstate
guidelinesintendedtoreininopioidprescribing,Sampsonsaid.Onepatientcame
toherwithanotefromherdoctorsayingthatduetostatelawhehadtoreduce
herdosage.Statelawcontainsnosuchrequirement.

Somephysiciansconsiderthenewrulesreasonableandappropriate,inlightofthe
crisisofopioiddeaths.Butcriticssayregulationsoftenfailtoaccountforindividual
differences.

Opioidsabsolutelyharmsomepatients.Buttheyabsolutelyhelpsomepatients,
saidDr.DanielP.Alford,aBostonUniversitySchoolofMedicineaddiction
specialistwhodirectstheschoolsSafeandCompetentOpioidPrescribing
Educationprogram.

Alforddecriedwhathecalledopioidphobiaandblanketregulatorychangesthat
treateverybodythesame.

RELATED|EvanHorowitz:USfacingnotone,buttwoopioid
epidemics

Patientsvarywidelyintheirresponsetothedrugs,andonlyabout1in10isatrisk
ofaddiction,saidDr.DanielB.Carr,apainspecialistatTuftsUniversitySchoolof
MedicinewhoispresidentoftheAmericanAcademyofPainMedicine.Meanwhile,
Carrsaid,globalstudiesshowthatmanymorepeoplesufferfromchronicpainthan
1of5freearticles.Subscribenow
fromaddiction.
Tweet Share 90

 CarrandAlfordsaythatcertainpatients,whofunctionwellonasteadydoseand
Comments
complywithmonitoring,cansafelyuseopioidsforyears.Butlately,manycanno
longergetthemedication,orenoughofit.

TanyaLussierofLowellisstaringdownherlastbottleofPercocet,cuttingpillsin
halftomakethemlast.TakingthePercocet,shesaid,wastheonlythingthat
enabledhertofunctionandtosleep,asshecopeswithburningandthrobbingin
herarmfromaspinalproblem,andchronicshinglespainthatstabsatherhead.

Lussier,a43yearoldmotheroftwowhoworkedasanursebeforebecoming
disabled,saidthepillsdonteliminatethepain,justloweritsintensityforthreeto
fivehours.

ButLussiersaidherdoctorwasconcernedthatopioidswouldactuallyincreaseher
sensitivitytopain,andinformedherthreemonthsagothatshewouldgetonly
threemoremonthlyprescriptionsforthedrug.Thedoctordeclinedtobe
interviewed.

Lussiersaidshehastriedeverythingelseprocedures,injections,other
medicationsbutnoneworked.Imrunningoutofoptions,shesaid.

Anintriguingalthoughasyetunpublishedresearchstudydocumentsthe
effectsoflimitingaccesstoopioids.AngelaKilby,aPhDcandidateatthe
MassachusettsInstituteofTechnology,analyzedadatabaseofmedicalclaimsfor7
millionindividualstofindoutwhathappenswhenopioidprescribingdecreases.
First,shefoundgoodnews:Overdosedeathsdeclined.Butshealsofound
downsides:Peopleinchronicpainhadhighermedicalcostsandworkedfewer
days,suggestingadeclineinhealth.

RELATED:OpioidoverdosedeathsbyMass.townin2015

RobertN.Jamison,chiefpsychologistatthePainManagementCenteratBrigham
andWomensHospital,saidthefervortocutbackonopioidsissendingnew
patientstohisclinic.Weseepeoplethathavebeenonopioidsfor25years,andall
1of5freearticles.Subscribenow
ofasuddentheirprovidersdontwanttowriteanymore,hesaid.
Tweet Share 90

 Comments

CRAIGF.WALKER/GLOBESTAFF

JoathanRodis(left)madeareststopduringawalkinWinthropwithhislongtimefriend,Lloyd
Caplan.RodishasMarfansyndrome,ageneticdisorder.

Sometimes,patientscometoJamisonsclinicbecausetheyhaveheardthebad
publicityaboutopioidsandwanttogetoffthedrugs,hesaid.Andsometimesthis
worksoutwell.Therearesomepeoplethatjustslowlyweanthemselvesoffand
discovertheirpainisntworse,hesaid.Someevenfeelbetter,becausetheydont
havethesideeffects....Thereareothersthatarereallystruggling.

CarolStevensongotaletterfromherdoctorrecently,sayinghewouldabideby
guidelinesfromtheCentersforDiseaseControlandPreventionsettinga
recommendedmaximumdoseforopioids.Totreatintractablepainaftermultiple
backsurgeries,Stevenson,a74yearoldHarwichresident,saidshewastaking180
milligramsofoxycodoneand40milligramsofDilaudideachday,wellabovethe
recommendedmaximum.Butshehadstayedatthatlevelforfourorfiveyears,and
shesaiditworkedforher.

1of5freearticles.Subscribenow
Tweet Share 90

 Herdoctor,whodeclinedaninterviewrequest,tapereddownheropioiddosage
Comments
triggeringahellishweekofwithdrawalandprescribedvariousnonopioid
medications,Stevensonsaid.Butshesaidallthenewdrugsputhertosleep.Shes
nowbackonoxycodoneandDilaudid,butatadosesolow,shesaid,Youmightas
wellthrowthemoutthewindow.

Inpainaroundtheclock,walkingwithacaneforthefirsttime,Stevensonsaid,I
seemyselfheadingtoawheelchair.

RELATED:Fourinnovativeideasforfixingtheopioidcrisis

Butsomephysiciansdoubtthevalueoflongtermopioids,especiallyathigher
amountsthatraisetheriskofoverdose.Therereallyisnogreatevidencethat
chronicopioidsforchronicpainaretrulybeneficial,saidDr.JuliaH.Lindenberg,
aprimarycaredoctoratBethIsraelDeaconessMedicalCenterinBoston.

LindenbergcalledtheCDCguidelinesandothernewregulationsreasonableand
necessary.

Somepainpatientsbristleatrequirementstosigncontracts,havetheirpills
counted,andgiveurinesamplesmeasuresintendedtomakesuretheyretaking
theirdrugsasprescribed.

ButwhenLindenbergspracticesteppedupurinetesting,thedoctorsfoundthata
fewlongstandingpatients,whohadbeenconsideredatlowriskforabuse,infact
weremisusingdrugs.Somehadcocaineorotherdrugsintheirurine,andsome
werenottakingtheprescribedopioids,suggestingtheyweresellingthepills.

Evenso,Lindenbergsaid,Thereisasmallsubsetofpatientsinmypracticewho
arebenefitingfromachronic,stabledoseofopioids.Thesepatientsarent
showingredflagsforabusetheyalsotryothertreatmentstomanagetheirpain.
Still,sheperiodicallytriestotaperdownthedosagesheprescribes.

1of5freearticles.Subscribenow
Tweet Share 90

 Comments

CRAIGF.WALKER/GLOBESTAFF

TanyaLussierposedforaportraitatherhomeinLowell.

Idontknowthatwetotallyunderstandexactlyhowtoapproachpatientswith
chronicpainandwhattherightapproachis,Lindenbergacknowledged.Itdiffers
foreverypatient.Andtreatmentdecisionsarecomplicated:Manypatientssuffer
frombothaddictionandchronicpainmanyalsohavedepressionandanxiety.

Lindenbergsaiddoctorsdofeelundergreaterscrutinyovertheirprescribing,but
added:Ithinkitsappropriate.

ButDr.RobertS.Baratz,aprimarycaredoctorinBraintree,isgalledbythenew
oversight.

Mostofusknowwhatweredoingmostofthetime,hesaid.Butweretreatedas
ifwedontbyeverybody.

Baratzsaidhe,likemostotherprimarycaredoctors,haslongexperiencemanaging
patientswhotakeopioidsforchronicpain.Thesepeople,hesaid,havenopartin
1of5freearticles.Subscribenow
theaddictioncrisis.Hemonitorsthemcloselyandstopsprescribingatthefirsthint
Tweet Share 90

 ofabuse. Comments

Jamison,theBrighampainspecialist,saidhefearsthatsomepatients,suddenly
unabletogetdrugstheyhavereliedon,willturntoheroinorotherstreetdrugsto
treattheirpain.

Andalthoughnoonecoulddocumentit,nearlyeverypainpatientinterviewed
predictedanevenmoredireconsequence:anincreaseinsuicides.Morepeople
aregoingtodie,saidRodis,themanwithMarfansyndrome,whoworksasan
advocateforchronicpainsufferers.Itsgoingtogetworse.

RELATED:Howdidtheopioidepidemicgetsobad?

Feelingtheeffects
Resultsofanationalonlinesurveyofchronicpainpatients.

Withinthepastyear,hasobtainingprescribedopioidmedicationbecome
moredifficult?
Moredifficult
. %

Nochange

.%

Other
. %

Lessdifficult
. %

Whatwastheprimaryobstacle?
Other
. %

Doctorstoppedprescribing

. %

Doctorloweredyourdose

. %

Pharmacistwouldnotdispense
1of5freearticles.Subscribenow
. %
Tweet Share 90

Notapplicable
 Notapplicable
Comments
.%

Doctorleftpractice

. %

Drugpriceswentup
. %

Deductibleorcopaywentup

. %

Lostinsurancecoverage
. %

Howoftenaremedicalprofessionalsskepticalofyourneedforopioidsto
treatpain?
Often
. %

Sometimes
. %

Rarely
. %

Never
. %

May2016surveybytheBostonGlobeandInspire,asocialnetworkof200onlinesupportgroups.
FELI CEFREY ER/G LOBESTAFF

FeliceJ.Freyercanbereachedatfelice.freyer@globe.com.FollowheronTwitter
@felicejfreyer.

GetTodaysHeadlinesfromtheGlobeinyourinbox:

Enteryouremailaddress SIGNUP

PrivacyPolicy

1of5freearticles.Subscribenow
Tweet Share 90