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Transgender Health Care Access Barriers
- 1. EMMA ROMBERG 2/23/16 POLICY BRIEF: THE STATE OF TRANSGENDER HEALTH CARE 1 | P a g e Beingtransgenderwasnota common topicfor general conversationuntil Caitlyn Jennerpubliclymade herdebut. Now,itisa hot topic,discussedmore openlythanever before. Thisincrease inawarenessof whatit meansto be transgenderbringsattentionto issuesthataffectthispopulation,andpressure to improve the currentsituation,specifically challengesfoundintransgenderhealthcare. Those whoidentifyastransgenderare people whose “genderidentity,gender expression,orbehavior”doesnotmatchwith whatis commonlyassociatedwiththe sex to whichtheywere assignedatbirth.1 The transgenderpopulationinthe UnitedStatesis estimatedtobe at 0.3% of the general population,orabout1 millionU.S.adults.1 The estimate isbasedona twostate surveythat was averagedandappliedtothe nation’s demographics,and isconsideredtobe an underestimate.2 The transgenderpopulationfacesa higherprevalenceof poorhealthoutcomes whencomparedtothe general population. Theyare at a higherriskfor beingHIV-positive (4 timesas likely),substance abuse problems, and have a dramaticallyhighersuicide attempt rate (40%),all of whichare compounded among transgenderracial minorities.3 Theyhave higher ratesof mental illnessthanthe general populationaswell.4 Theseissuesare amplified due to the risksassociatedwithpoverty. Transgenderindividualshave a14% unemploymentrate,almostdouble the national average.3 Thiscontributestothe higherratesof poverty,andlowerratesof employment-based insurance. Theyare more likelytobe uninsured whencomparedtoboth the general population, and lesbian,gay,andbisexual populations.5 Priorto 2014, manyinsurance policiescould denycoverage toopenlytransgender individualsbasedonbeingtransgender asa pre- existingcondition.1 Evenafterthe Affordable Care Act (ACA) bannedthiscoverage denial, transition-relatedcare,especiallysexual reassignmentsurgery(SRS),canstill be denied and still is,eveninthe VA.1 Evenafterthisban and the expansionof Medicaidbythe ACA, some transgenderindividualsfallintothe “coverage gap” and are unable toaffordhealth insurance.6 One studyconcludedthat50% of transgender participants surveyedhad postponed curative care whenill because of provider discriminationor affordability, more than double the national average (20%).7 The same studyfound that abouta quarterof respondents made less than $20,000 a year, makingthe affordability Defining Transgender Health & Health Care among the Transgender Population Table 1. Transgender Postponement of Care AADAPTED FROM CRUZ, T., 2014 (7) Table 2. Demographics of Transgender Sub-Population BADAPTED FROM CRUZ, T., 2014 (7)
- 2. EMMA ROMBERG 2/23/16 POLICY BRIEF: THE STATE OF TRANSGENDER HEALTH CARE 2 | P a g e of healthcare a strong factorin theirdecisionto seek healthcare.7 In one of the biggestsurveysonthe transgenderpopulation,the National TransgenderDiscriminationSurvey(NTDS),19% of respondentswere uninsured,withthe same percentage beingdeniedcare bytheirprovider due to theirgenderidentity.1 The percentage of those whowere deniedcare ishigheramong transgenderminorities.5 The NTDS foundthat 28% of participantshadexperiencedverbal harassment ina medical settingwhentheydidseekcare.1 Providererrorsincompetentlyaddressing transgenderpatientscaninclude misconduct, verbal abuse,andprejudicedconnotationsas well ascommitmenttobinarysex categoriesin restrooms,EMRs,intake forms,andother areas.8 Thiscan resultindecreasedattendance, assistance seeking, andfailure todisclose transgenderstatuswhichcandecrease overall qualityof care.8 Providerdiscriminationisa majordeterrentfortransgenderpatients seekingcare. Providerinexperience isalsoanissue in transgenderpatientsseekingqualityand competenthealthcare. One studythat surveyedtransgenderpatientsfoundthatin 50% of cases,the patienthadtaught transgendercare to hisor her provider.5 Inthis case,there are manyunnecessaryreferralsto specialistsforroutine healthcare thatcan be done bythe primarycare physician.9 Thisdrives up out-of-pocketcostsfortransgenderpatients because manyinsurance policiesdonotcover transition-relatedcare. Some policiesdocover counselingandhormone therapy,butdeny sexual reassignmentsurgery(SRS) onthe basis that isnot the standard of care. However,SRS has beenshowntoreduce genderdysphoriain transgenderpatientswithhighpercentagesof female andmale transgenderpatients requestingit(75% and 90% respectively).1 Itis alsoendorsedbythe WorldProfessional AssociationforTransgenderHealth(WPATH) in theirStandardsof Care, the AmericanMedical Association,andthe AmericanPsychological Assocation.1 Findingaproviderthatconforms to currentrecommendationsfortransgender healthcare is verydifficult,in2012 onlysix physiciansperformedSRS.1 Thismakes competent,comprehensive,continuous,and affordable care nearlyimpossible. The lack of accessto affordable,quality healthcare has resultedinpoorerpopulation health. Healthcare is oftennottailoredtothe needsof the patient, issuesof sexual healthand potential treatmentoptionssuchashormone therapy,mental healthcounseling,andSRSare oftennotdiscussed. Itisestimatedthat50% of transgenderindividualshave obtainedinjected hormoneseitherillegallyoroutside of a traditional medical setting.6 Thishasobvious risksincludingdisease transmissionthrough sharingneedles,low-qualityandpotentially dangeroushormones,andnomonitoringof co- morbiditiesassociatedwithlong-termuse of hormones.6 Qualityof care iscloselylinkedwiththe providerwillingnesstolistenandacceptance of the patient’sself-identifiedgender.9 Evenif the providerisinexperienced,the humanenessof boththe providerandmedical staff ishighly valuedbytransgenderpatients.10 When combinedwithtechnical competence,high qualitycare contributedtohigherlevelsof patientsatisfactionwhichthenincreased overall healthstatus.10 The emotional andpsychologicalcost on the transgenderpopulationisenormous. What is the cost?
- 3. EMMA ROMBERG 2/23/16 POLICY BRIEF: THE STATE OF TRANSGENDER HEALTH CARE 3 | P a g e Theirattemptedsuicide rate is41%,nearlyforty timesgreaterthanthe general populationat 1.6%.1 Theyface up to fourtimeshigherrates of HIV infectioncomparedtothe general population.3 There isblatantheterosexist beliefsthatare inherenttothe healthcare system. Thisincludesbinarysex categoriesin EMRs, restroomchoices,verbal harassmentof transgenderpatientsbyproviders,anddenialof care to transgenderpatients. All of these and more contribute tocontinuedmarginalization and the stigmafaced by the transgender populationresultinginhigherratesof poor healthoutcomes,decreaseduse of necessary medical services,andoverall patient dissatisfactionwithcare. Providinghealthcare tothe transgenderpopulationisbothaffordableand cost-effective. One studyfoundthatif the U.S. general populationassumedthe cost,each memberwouldhave topayan additional $0.016 per month.11 The same study estimated that providercoverage wouldbe cost-effective in85% of casesusingthe commonthresholdof $100,000 perQALY.11 The AMA has estimated that providinghealthcare to transgender people wouldbe almostcost-saving,withan incremental cost-effectivenessof $500.1 THE HSS & MACY V.DEPARTMENT OF JUSTICE In 2013, the U.S. Departmentof Health and HumanServicesinvalidatedMedicare’s National Coverage Determination140.3which deniedcoverage of transsexual surgerydue to sexual discrimination.12 Thisdecisionwas possible becauseof amajor court appeal in 2012. In Macy v.Departmentof Justice,itwas determinedthat discriminationbecause of identifyingastransgender was discriminationonthe basisof sex and therefore coveredunderTitle VIIof the Civil RightsActof 1964.13 Thishas implicationsforratesof employment-based insurance aswell,andwill hopefullydecreasehiring discrimination. In 2015, the HSS publishedproposedrules for Nondiscriminationin Health-RelatedInsurance and OtherHealthRelated Coverage inSection92.207 to expandthe currentban on discrimination toinclude gender identityandsexual orientation.12 These rules wouldapplytoany issuersof qualifiedhealth insurance plansthroughthe HealthInsurance Marketplacesaswell asthose whoreceived federal financial assistance orassistance throughHSS.12 Figure 1. Implications of Heterosexist Beliefs in LGBT Heath Care FROM ALBUQUERQUE ET AL., 2016 (8). Current Policies, Guidelines, and Rulings
- 4. EMMA ROMBERG 2/23/16 POLICY BRIEF: THE STATE OF TRANSGENDER HEALTH CARE 4 | P a g e These court decisionslaidthe groundworkforthe ACA to ban the denial of coverage basedonbeingtransgenderasa pre- existingcondition. THE ACA, MEDICARE, & MEDICAID In 2014, the ACA banneddenial of coverage basedonbeingtransgenderasa pre- existingcondition.1 Itdoesnotbandenial of transition-relatedcare,however. Lackof transition-relatedcare canresultinhigherrates of illegal andunsafe hormone use,aswell as self-performedsurgeries.4 Asthe transgender populationagesand becomeseligible for Medicare,theygaincoverage forbothroutine care and hormone therapy,butSRSisnot covered.1 The expansionof Medicaidhas increasedaccessaswell butmanytransgender individualsfall intothe “coverage gap,”making too little toaffordprivate healthinsurance plansor payingout-of-pocket,buttoomuchto qualifyforMedicaid.6 Also,the expansionof Medicaidvariesbystate resultinginunequal increasesinaccess. Althoughthisisa goodfirststep in addressinghealthcare coverage issues specific to the transgenderpopulation,more policy workneedstooccur inorderto improve the situation inregardstoaccessingthe adequate care requestedbytransgenderpatients. This includescoverage of routine andpreventative care that isindividualizedtotransgender patients,hormone therapy,counseling,and SRS. GUIDELINES Many prominentorganizations advocatingforqualityhealthcare forall populationshave publishedstandardsof care for transgenderpatients. WPATHhaspublished recommendationsonstandardsof care includinghowtomanage routine care,including hormone therapy,asa primarycare physician.3 The JointCommissionhasalsopublished general recommendationsandafieldguide for physiciansinhow toadministerqualityand competentcare fortransgenderpatients.5 Othermedical andpublichealthassociations have publiclysupportedcertaintreatmentsas effectiveandpotentiallylife-savingfor transgenderpatients. Manyprovidersstill feel uncomfortable inprovidingtransgender-specific healthcare despite havingaccesstothese guidelinesandstandards.5 There isagap in researchon transgenderhealthpromotionand maintenance,withmanypapersfocusingonthe abnormalityof beingtransgenderwiththe accompanyingdiseases.5 At an educational level,physiciansare requiredto attendcultural competencytraining courses. Thistraininghasthe potential tobe effectiveif implementedcorrectlywithan emphasisonsensitivityandunderstanding. However,ithasthe tendencytoreduce culture to a simple,one-dimensional state thatcanbe taught ina seriesof courseswhichcan reinforce stereotypesandassumptions.4 Onthe other hand,it can make providerstooneutral andcan restricthonestdiscussionsbetweenprovider and transgenderpatient. Providersmayfeel that beingneutral towardsgenderidentityis refrainingfromusinganyidentifierswhichcan limitopportunitiesforgenderdisclosure bythe patient.4 Thiscanbe detrimentaltothe health of the patientandlimitthe care the provideris able to give. INCREASE POPULATION-BASEDRESEARCH ON TRANSGENDER POPULATIONS Increasingresearchontransgender healthandhealthcare is vital toimprovingthe Recommendations
- 5. EMMA ROMBERG 2/23/16 POLICY BRIEF: THE STATE OF TRANSGENDER HEALTH CARE 5 | P a g e access to,and the qualityof healthcare they receive. There isalack of researchon promotingtransgenderhealthaswell as general characteristicsof the transgender population. HealthyPeople 2020 iscurrently developingwaystoincrease the numberof population-baseddatasystemsthatmonitor and identifythe transgenderpopulation.14 Many organizationsare pushingfora comprehensive reviewanddevelopmentof more researchinboth demographicsandhealth statusof the transgenderpopulation. Thisis necessaryinorderto informprovider education,andpolicy-makinginregardsto creatinga standardof care. INCREASE PROVIDER EDUCATIONON TRANSGENDER-SPECIFICCARE In manycases,providerinexperience resultedinlossof trustand incompetent care. There isa lackof educationabouttransgender- specifichealthcare. Thisneedstobe implementedinbothmedical school settings and alsoreinforcedthroughoutpracticing providers. Educatingprimarycare physicians aboutcontinuedhormone use among transgenderpatientstoincrease continuityof visitswouldbuildtrustandconfidence between patientandprovider,aswell aseliminate many unnecessaryreferralstospecialists. Also educatingprimarycare physiciansaboutroutine care, suchas the needforpapsmearsamong female tomale patientsthathave not undergone SRS,wouldbe vital toimprove sexual andoverall healthof transgender patients.Thiseducationwouldalsoneedtobe appliedtocertainspecialtiesthatsee ahigher percentage of transgenderpatients,including endocrinologists,urologists,obstetrics, gynecologists,emergencyphysicians,and plasticandreconstructive surgeons.1 Educationfor providerscaninclude manyareas while caringfora patientsuchas, while takingmedicalhistory,askingforthe patient’spreferredname andpronounwhich allowsforan opendialogue aboutgender identity. There are additional questionsfora transgendermedical historyincludingpast hormone use,andtakinga detailedand accurate sexual history.15 Also,askingabout mental healthhistoryisimportanttodetermine readinessforhormones.15 Duringphysical examinations,there are some differencesin how it shouldbe conductedaccordingto transgenderstatus,hormone use,andSRSthat shouldbe takenintoaccount. 15 Educatingprovidersabouttransgender- specifichealthcare wouldresultingreater providerconfidence intreatingtransgender patientsandhopefullyincreaseopendiscussion betweencapable providersandtransgender patients. CREATE A TRANSGENDER FRIENDLY ENVIRONMENTIN PROVIDER SETTINGS Creatinga transgenderfriendly environmentincludesseveral basicchangesto intake forms,EMRs,genderneutral bathrooms, and alteringandaddingsome questionswhen addressingtransgenderpatients. Includinggenderidentityquestionson intake forms,andEMRs will eliminate feelings of discriminationandbiastowardstransgender patientsandincrease theirlevel of comfortin goingto theirlocal healthcare provider. This wouldalso include whenaskingabouta partner,spouse,oranotherparentinthe household. Removingthe labelsof male andfemale bathroomswill assistincreatingamore transgenderfriendlyprovidersetting.
- 6. EMMA ROMBERG 2/23/16 POLICY BRIEF: THE STATE OF TRANSGENDER HEALTH CARE 6 | P a g e Educatingbothprovidersandmedical staff inhow to addresstransgenderpatientsby preferredpronounwill create amore transgenderfriendlysettingandallowfora standardvocabularyincommunicatingwith transgenderpatients. These changescan make itpossible to transgenderpatientstoaccessandreceive qualityandcompetenthealthcare. IMPLEMENT POLICIES FOR TRANSGENDER HEALTH CARE Implementingcertainpoliciesto create a standard of care is importanttodecrease lapsesinqualityof care and ensure competent care. Thiswouldnotonlyaffectprovider-based care but wouldalsoaffectcoverage by insurance policies. Byhavinganaccepted standardof care withaccompanying accepted language,insurance companieswouldnolonger be able to denycertaintherapiesonthe basis that theyare notwidelyaccepted,suchasSRS. It wouldprovide astandardizedvocabularyfor transgenderpatientstoallowforcompetent care and give structure tophysicianswhomay not have a lotof experience withtransgender patients. Itwouldbe mostbeneficial if itwasa nation-widestandardof care. Newpolicieswouldneedtomirroranti- discriminationlawsaswell toprevent harassmentanddiscriminationonthe basisof genderidentityandsexual orientationforboth providersandinsurance companies. These couldinclude furthercurrentprovisions allowingpatientstodecide whocanbe inthe room withthem,andwhotheycan give power of attorney. These couldalsogive insurance companiesstrictguidelinesonwhatcannotbe denied. ItcouldalsomodifyexistingWPATH guidelinesthatallowinsurance companiesto denyroutine care,like papsmearcoverage to female tomale individuals withoutSRS,to patientsbecause of discrepanciesbetweenthe procedure andstatedgenderidentity. 1 Stroumsa D. The State of Transgender HealthCare: Policy, Law, and MedicalFrameworks. Am J Public Health. 2014;104(3):e31-e38. doi:10.2105/ajph.2013.301789. 2 RubinR. Trans health care inthe USA:a longwayto go. The Lancet. 2015;386(9995):727-728. doi:10.1016/s0140-6736(15)61525-2. 3 Roberts T, FantzC. Barriers to qualityhealthcare for the transgender population. Clinical Biochemistry. 2014;47(10-11):983-987. doi:10.1016/j.clinbiochem.2014.02.009. 4 Baker K, BeaganB. MakingAssumptions, Making Space: An Anthropological Critique of Cultural Competency and Its Relevance to Queer Patients. Medical Anthropology Quarterly. 2014;28(4):578-598. doi:10.1111/maq.12129. 5 Lim F, Brown D, Justin Kim S. CE. Addressing healthcare disparities in the lesbian, gay, bisexual, and transgender population:a review ofbest practices. AJN, American Journal of Nursing. 2014;114(6):24-34. doi:10.1097/01.naj.0000450423.89759.36. 6 Daniel H, Butkus R. Lesbian, Gay, Bisexual, and Transgender HealthDisparities:Executive Summary of a PolicyPositionPaper Fromthe American College of Physicians. Annals of Internal Medicine. 2015;163(2):135-148. doi:10.7326/m14-2482. 7 Cruz T. Assessing access to care for transgender and gender nonconformingpeople: A considerationof diversityin combating discrimination. Social Science & Medicine. 2014;110:65-73. doi:10.1016/j.socscimed.2014.03.032. 8 Albuquerque G, de Lima GarciaC, da Silva Quirino G et al. Access to healthservices bylesbian, gay, bisexual, and transgender persons:systematic literature review. BMCInt Health Hum Rights. 2016;16(2):1- 10. doi:10.1186/s12914-015-0072-9. 9 Sperber J, Landers S, Lawrence S. Access to HealthCare for TransgenderedPersons:Results of a Needs Assessment inBoston. International Journal of Transgenderism. 2005;8(2-3):75-91. doi:10.1300/j485v08n02_08. References
- 7. EMMA ROMBERG 2/23/16 POLICY BRIEF: THE STATE OF TRANSGENDER HEALTH CARE 7 | P a g e 10 Bockting W, Robinson B, Benner A, Schletema K. Patient Satisfaction withTransgender HealthServices. Journal of Sex & Marital Therapy. 2004;30(4):277- 294. doi:10.1080/00926230490422467. 11 Padula W, Heru S, Campbell J. Societal Implications of HealthInsurance Coverage for MedicallyNecessary Services inthe U.S. Transgender Population:A Cost- Effectiveness Analysis. Journal of General Internal Medicine. 2015;[Epub aheadof print]:1-8. doi:10.1007/s11606-015-3529-6. 12 Department of HealthandHumanServices. Nondiscrimination In Health Programs And Activities;Proposed Rule. FederalRegister; 2015:54189-54190. 13 U.S. Equal Employment OpportunityCommission. Macy v. Department ofJustice, EEOCAppealNo. 0120120821. 2016. Available at: http://www.eeoc.gov/decisions/0120120821%20M acy%20v%20DOJ%20ATF.txt. AccessedFebruary7, 2016. 14 HealthyPeople.gov. Lesbian, Gay, Bisexual, and Transgender Health| HealthyPeople 2020. 2016. Available at: http://www.healthypeople.gov/2020/topics- objectives/topic/lesbian-gay-bisexual-and- transgender-health. Accessed January 24, 2016. 15 WilliamsonC. Providing Care to Transgender Persons:A Clinical Approachto PrimaryCare, Hormones, and HIV Management. Journal of the Association of Nurses in AIDS Care. 2010;21(3):221-229. doi:10.1016/j.jana.2010.02.004.