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AMERICAN ACADEMY OF NEUROLOCY
THE ETHICAL ROLE OF NEUROLOGTSTS IN THE A.IDS EPIDEMIC
Report of thc Ethics rod HuEanillcs Subcommittee
Nirctccn hundrcd ai.octy-oac was Bot o!.ly thc cod of thc fust ycar of thc Dccadc of thc Braio, but thc
cod of tbc hrst dccadc of thc acquircd inmuaodcficicncy syndrooc (ArDS) cpidcmic. Aftcr l0 ycars
markcd by a growiag uodcrstardiag of the buman inouaodeficicocy vnus (HIV) and thc diseascs it
causcs, thc AAN fccls that this is an appropriatc tine for ncurologists to rcflcct on t-be magnitudc of
lhc cpidcmic ald its ioplicadons for cacb of us in our practiccs and tcaching aod scicntific carecrs.
As qcurologisls and neuroscienciss, wc oow apprcciate lhai HMircctly invadcs the DervousJAlcrD
catly in tbc coursc of infccrior, producing virus-rclatcd discasc that may be guirc indcpcndcnt of thc
dcA:cc of imnuoc supprcssion, just as it rcsults ia CNS tumors and opportunistic iafeitions rhat arc
rmportan! latc oarkcrs of imounological cbargc. Thus, HIV infcctiou produces ncurologiql discasc
tbrougbout its coursc, and ncurologiss bavc an impona.at contriburioo to makc to thc gn'derstaadiag of
the discasc, to tbe carc of i.ofcctcd paticnts, to socicqy's rcspoDsc to thc occds of thosc iovolvcd. and
ultiraatcly to T hatcvcr succcss we *ill harc cootrolliog thc epidcmic oationally ard throughouthc world.
In 1990 tbc cusulative death roll from AIDS rcacbcd loo,'m i! thc Uqitcd Statcs, with 30,196 dcaths
in that ycar alonc. Thc cu.oulativc casc totsr for adurts and adoresccnts rcacbcd r52,23r, In 19g9, thc
ccnrcrs.for Discasc courror (cDc) prcdictcd 365,000 diagDosed cascs of AIDS by LD2 witb 28,060
cuoulativc dcatbs. If thcsc prcdictions arc accuratc, o,c Jhourd scc learly 2u,00{i ncwly diagnosid
cascs of AIDS in thc rcx h^,o ycars wit-h pcrhaps as uEDy as l65,mo delhs __ a ocar Liptig of tlc
ctrrlent rate.
AIDS i! 1989 was thc sccoqd lca.liqg cat(c of dcath a.oong youag Amcricar meu (agcd }.44). It
t9E8' it was rhc cighth lcarring causc of death a.moog comp.auty agco womcn but is -by now surcly rn
tbe top fivc. As imprcssive as thcsc qumbers are, it is stiil tloughr &at AfDS surveillarcc idcntifics
only 70 ' 90vo of ases, so cvcr tlcsc rumbers arc undcrcstimatJs of thc problcm il this country
AIDS_ is also ircreasi'gly a discasc of thc poor and uadcrprivilcged- This is oor mercry bccausc thc
coEbirario! of acquircd disabirity aad the nccd for etpcnsive -Jdi""r ""r" inpovcrishes -;y ;"i.",
but bccause sprcad of thc d.iscase has bcco disproponiolar" a-ong thc racial aad cthaic miroriry
groups that coDstitutc tic bulk of Aacrica's urban ulderclass.
l! is cstiEarcd that rhcrc arc rwo million Hrv-bJectcd pcoplc i.o all of ahc Amcricas and morc dran
thrcc million infected in A-frica - pcrhaps six millioo worldwidc. Furtbcrmore, urdcr-rcponing is a
Steat ProblcE ia thc Third World wirh perhaps oaly 6Vo or 1Vo of ao cstioarcd 600,00d casci of alDS
rcponed ia Africa.
The AIDS cpidemic prcscnts a challcogc to &urologists to cxaEilc thc nost iEportalt mcdical, cthid
aad socia.l issues of our tinc. Wc arc proEptcd to thirt abod the prevcntability of tbc discasc ald
what wc ca.s do individually aad collcctiraly g6 dinirich ia cnormity. Wc must ipprcciatc thc tcr6ilal
oa[urs of thc illacss ard dctcraioc bov rrc cao bclp paticus copc with thc iDcvitati[ty of carly dcath.
Thus, we nccd to undcrstaad the lcgal ard cthic.l ralidiry of advancc dircctincs - whcthcr tbey be
liviag wills or durablc powcrs of anorDcy for hcalti care - ard pronotc thcir usc. wc must Lelp ro
iocrcasc awarcncss of AIDS as a dcncating ilncss, wlich rcquires us to colhont both the problcns of
obtaining inforucd coaseot from patients who may bc incapablc of undcrstaoding thc rcquirimcnts of
lbcir carc aad the problcms sf siffiglding or withdrawing erc from palic s when pcnincnt advalcc
dircctivcs arc lacking. Thc AIDS cpidcoic also hiehlights thc problems of thc oaldistributioo of carc rs
Ancrica atrd the lack of adcquatc health carc insurancc for a largc and ucedy scgpcot of our
population.
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