HRSACare

PROVIDING HIV/AIDS CARE IN A CHANGING ENVIRONMENT

HEALTH RESOURCES & SERVICES ADMINISTRATION HIV/AIDS BUREAU

IN THIS

ISSUE

ClinicalCareofWomenLivingwithHIVDisease 4

Four PerspectivesFromWomen Serving Women 8

IOMPanelRecommendsRoutineHIVTestsforPregnantWomen 12

Insert:CalendarofEvents

December 1998

Women and HIV/AIDS

ContinuedonPage 2

Introduction

CircumstancesThatDetermineNeed

Between 120,000 and 160,000 womenarelivingwithHIV

disease intheUnitedStatestoday(1). More than one-half

donotknowtheirownserostatusorthatoftheirpartner(2).

Many will not be tested for HIV until they seek prenatal

care, give birth, develop an AIDSrelated illness or until their partner

developsanAIDS-relatedillness(3,

4).

The health status of HIV-positive

women in care compares poorly to

thatofHIV-positivemen.Theyhave

higher viral load counts and lower

CD4 countswhentheyentercare(3,

5). They are less likely to be seen

regularly by an experienced

clinician, less likely to be on

antiretroviral therapy, less likely to

beonathree-drugcombination, and

less likely to be taking a protease

inhibitor(5,6,7,8).

The incidence of HIV is increasing

among women. In 25 States with

integrated HIV reporting systems,

new infections among women

increased15.7percent in1997 over

1996 (9,10). While women

represent 17 percent of AIDS

diagnoses from January 1994 through June 1997, they

represent28percentofHIVdiagnosesin the same period

(9, 11). AlthoughAfricanAmericanandHispanicwomen

accountforonly25percentoftheU.S.femalepopulation,

they represent approximately 80 percent of new AIDS

casesamongwomen(9).

The needsofapproximately

62 percentofHIV-positivewomenintheUnitedStatesare

fundamentally differentiated from those of others by a

single fact, according to the CDC:

theyaremothersofatleastone child

underage20.

The first priority of these women is

their children. To grasp the circumstances of HIV-positive mothers—many of whom are also caring

for a partner—one expert has

suggested that individuals first

imagine any mother. Then,superimpose on her life and the life of her

family the impact of HIV: social

stigmatization and isolation, increasingly frequent illnesses, debilitation,

poverty, intensifying anxiety about

the happiness and the health of her

childrenandpartnerwhomayalsobe

HIV-positive, guilt and depression

aboutleavingchildrenandlovedones

behind,andfearofprematuredeath.

Parenthood andcare-giving

Lack of awareness of risk and

serostatus Women often do not

know the serostatus of their HIVinfectedpartner(4,12).

By Gender

New AIDS Cases

in the U.S. (1997)
One-half of all womenwhoarealreadyHIV-positive donotknow their serostatus.

Many of these womendonotevensuspect thatthey are at-risk andneitherdotheir

healthcareproviders. Inonestudyatalarge,urbanmedicalcenter,“...iftestinghad

been restricted to women with recognized high-risk factors, only 57 percent of the

HIV-positivepregnantwomenwouldhavebeenidentified”(12).

AllpersonslivingwithHIVdiseaselivewiththethreatofdiscriminationbecause

HIV/AIDSamongwomenintheUnitedStatesis,toalargedegree,relatedto

an epidemic of poverty and its associated problems. Mostwomen with HIV were

poorbeforebecominginfectedandwillbecomepoorerastheirdiseaseprogresses(8,

15).AMary-landMedicaidstudyshowedthat75percentoftheHIV-positivewomen

whoreceiveMedicaiddidsobeforetheywerediagnosedwithHIV(16). A studyin

one EMA indicated that “. . .

among women and minorities, HIV infection is

associated with preexisting

economic distress” (15). A

study of women from four

urbanareas in the Northeast

indicatedthat72percenthad

incomes of less than $1,000

per month (13). Forwomen

inseverepoverty,HIVisnot

always the most important

stressorandtheyarelikelyto

devote their energies to

addressing immediate needs

offoodandhousingfortheir

familyovermedicalcarefor

themselves, particularly if

theyareasymptomatic.

Poverty may be increasing

among some HIV-positive

women. SomeCAREAct-fundedprovidershavereportedanincreaseindemandfor

uncompensated care associated with changes in public assistance laws and the

movementtowardMedicaidmanagedcare. Few HIV-positive women intheUnited

States are privately insured; historically, the majority have been eligible

Discrimination

Poverty

oftheirHIVstatus. The80percentofwomenlivingwithHIVdisease

who areminorityalsolivewithracialdiscrimination. Discriminationreduces access

topreventionmessagesandhealthcare,whichisreflectedinHIVincidenceratesand

health indicatorsamongminority women: African American andHispanic women

are less likely than caucasionwomen tohave had an outpatient visitinthepastsix

months, or to receive prophylaxis for opportunistic infections (7, 13). African

Americanwomenages16to21haveanHIVprevalencerateseventimeshigherthan

caucasianwomenandeighttimeshigherthanHispanicwomeninthesameagegroup

(14). Theeffectofraceandethnicityonaccesstopreventionmessages,theincidence

ofco-morbiditiesandriskfactorsforHIV,andonbarrierstocaremustbeaddressedin

any initiatives for reducingHIVinfection among womenandimproving the health

statusofthosealreadylivingwiththedisease.

Ryan White

CARE Act

Clients

By Gender, 1996

AIDS Among Females

in the U.S.

Cases Reported in 1997, by

Race/Ethnicity

Title I

Title II

Title III

Title IV

ADAP

69.7%

74.5%

73.0%

65.7%

82.1%

Males Females

25.5%

27.0%

34.3%

17.9%

30.3%

Continued from Page1.. . WOMEN AND HIV/AIDS

2

Source,HIV/AIDSBureau
3

forMedicaid.

Among

HIV-positive women, psychologicaldistress is a barrier to coping. In one study, 31

percent ofwomenwhotestedpositiveforHIVdelayedcareforthreemonthsorlonger

because of fear, depression, and anxiety about their serostatus (3). Psychological

distressamongwomeniscompoundedbyhighincidencesofpoverty,discrimination,

care-giving responsibilities,addiction,andviolence (18).Of2,000womenenrolledin

the NationalInstitutesofHealthWomen’sInteragencyHIVStudy, nearly50percent

reportahistoryofsexualabuseand60percenthavebeenvictims ofdomesticviolence

(16).

Substance abuse remains a

prominent problem among

women with HIV disease and

those atrisk,andmerits attention outside the scope of thisarticle(See

,“HIV/AIDSandSubstanceAbuse,”April1998).

In the mid-1990s,injectiondrugusedroppedtothesecondleadingrisk

factorforwomendiagnosedwithAIDS. Yet, 32percentofnewAIDS

cases in1997 were transmitted through IDU and the majorityofcases

transmitted to women through heterosexual contact involved a sexual

partnerwhocontractedHIVthroughIDU. Theuseofbothinjectedand

non-injected substances leads to lower health care utilization and the

effectofsubstanceuseonadherenceiscurrentlybeingdebated.

Despiteincreased attentioninrecentyears,HIV-positivewomenincare

arelesslikelythanmentoreceivethecurrentstandardofcare(5,7,17).

They are less likely to know their viral load or CD4 count, and their

medica l

chartsarelesslikelytocontainthisinformation(17). Womenincareare

less likely than men to have had a primary careconsultin the past six

months, and are less likely than men to receive prophylaxis and

antiretroviraltherapy.

Women tend to receive care from less experienced providers—a critical problem, since provider expertise and experience

directly affect quality of care and disease progression (5, 8). It is clear that efforts to communicate

However, todayonlypregnantwomeninpovertyautomaticallyqualify

forMedicaid,althoughsomeStatesaddprovisionsforwomenwhoarenotpregnant.

For an HIV-positive woman who is Medicaid-eligible, Medicaid managed care

sometimes can force a difficult choice. Should she seek care through a Medicaid

managed care system that does not include providers experienced in treating HIVpositive women? Or, should she turn to an AIDS service organization outside the

Medicaid managed care system that she cannot pay, but which has the necessary

expertise to provide the care she and her family need? (See ,

“ManagedCareandHIV/AIDS,”June1998).

AidforFamilieswithDependentChildren(AFDC),anentitlement,hasbeenreplaced

with Temporary AssistanceforNeedyFamilies(TANF),ablockgrantprogram. Asa

result, some poor HIV-positive women will lose financial support because TANF

benefits are time limited, because they may not meet the State’s qualifications, or

becausetheycannotcomplywiththeTANFworkrequirements(16).

HRSA Care ACTION

Psychological Distress, Violence, Substance Abuse, and Other Factors

HRSACare ACTION

DeliveringQualityCaretoHIV-PositiveWomen

Titles I, II, and III oftheCARE

Act target all those living with

HIV/AIDS who lack accessto

care, and Title IV funds additional services especially for

women, infants, children, youth,

and families. Title IV, whose

clients are predominantly of

color, funds 48 grants in 26

States, the District of Columbia

and Puerto Rico. Grantees

provide clinical carethrough a

family-oriented approach that

addresses the effect of HIV on

families and increasesthe

likelihood that clients will stay

in treatment.

African Americans

and Hispanics

Percent of Total CARE Act

Clients (1996)

Title I TitleII TitleIII Title IV ADAP

Hispanic AfricanAmerican

Continued onPage4

Source,HIV/AIDSBureau

Clinical and Support

Services for Women
thosewithproviders whodonotknowthatHIV-positiveindividuals

shouldbetreatedbyspecialistsmustbeenhanced.

Researchandexperience

indicate a set of conditions which facilitate HIV care for women

(Seeboxatleft).

Among the most fortunate, all of these conditions are met through

theindividual’sownresources. Inothercases,thepatientmayneed

assistanceinonlyonearea.However,manywomenlivingwithHIV

disease cope with a combinationofcircumstances thattheycannot

manage ontheirown. These womenrequire assistance on several

fronts. The RyanWhiteCAREActexiststomitigatethesecircumstancesandthentodeliverthebestclinicalcareavailable.

The circumstances and unique characteristics of HIV-positive

women have not always been clearly differentiated. Increasing

understanding ofthesedifferencesandenhancingresponsestothem

willimproveaccess,utilization,andqualityofcareformanywomen

overtime. Today,genderisapredictoroftherateofincreaseinHIV

incidence, access tocare,andhealthstatus. Therefore, muchwork

isyettobedoneonbehalfofwomenlivingwithHIVdiseaseand

thoseatrisk.

ConditionsNecessaryforReceivingCare

References for this article are available on the HIV/AIDS Bureau web site

<http://www.hrsa.dhhs.gov/hab>.

The risk forHIVmustbeperceived.

HIV status must be known and the need formedical

careunderstood.

Care-giving responsibilitiesmustbemet.

Basic life needs forfood,shelter, and community

mustbemet.

Treatmentforotherproblems including substance

abuse and mentalhealthdisordersmustbeongoing.

Transportation to appointments must be available.

Child care must be available.

Financial means topayforcaremustbeavailable.

Thepatientmustencountermedical personnel

qualified to treat HIV infection inwomen.

Thepatientmustencountercarethatis“familycentered”—care that addresses the impactofHIV

and barriers to care for the family.

Thepatientmustencountercarethatis“coordinated”

to reduce the logistical problems of accessing care

for an entire family.

All prescribedmedicationsmustbeavailable.

Informational, psychological, and emotionalsupport

from peers and careprovidersmustbeongoing.

Conditions for Retaining

Women in Care

CLINICAL

CARE OFWOMEN

RECENT DEVELOPMENTS

By Jean R. Anderson, M.D.

Adaptedfrom“ReportfromGeneva:WomenandHIV,” , July1998.

Referenced abstractswerepresentedtotheXIIWorldAIDSConferenceinGeneva.

TheHopkins HIV Report

Continued from Page3.. . WOMEN AND HIV/AIDS

PerinatalTransmission

Increasingevidence indicates thatAZTiseffectivein

reducing transmissionbetweenmother and infant. Reports

from several countries using the Pediatric AIDS Clinical

Trials Group (ACTG) 076 regimen, in which women are

treated with AZT antenatally and intravenously during

labor, followed by 6 weeks of treatment to the neonate,

generallydemonstrate reductions in transmission to 0 to 5

percent [Galvaao, Abstract 12155; Rakusan, Abstract

12157;Ciria,Abstract23314;Fiscus,Abstract33162].

Many emerging reports concern transmission following

planned or unplanned digressions from the full 076

regimen. While the full regimen appears to be the most

effective, maternal treatment seems to be the most important. Fiscus reported a 3.7 percent transmission rate in

North Carolina with any maternal antiretroviral therapy

(ART)ascomparedto30.5percent withnomaternalART

(n=653). Giving AZT only to the infantwasnotparticularlyeffective(transmissionrate26.7percent),butnumbers

inthiscategoryweresmall[Abstract33162].

AZT

4
Intrapartum and neonatal treatment only (without maternal antenatal treatment) were

moresuccessful,resultinginatransmissionrateofapproximately11percent.

A growing body of data links viral burden to maternal-fetal transmission. Lambert

examined factors associated with perinatal transmission in 459 women enrolled in

PACTG 185 (comparing efficacy of HIVIG+AZTvs.IVIG+AZT)[Abstract23265].

Inamultivariateanalysis,onlyviralload wasassociatedwithtransmission. Important

factors not associated with transmission included mode of delivery, prior AZT use,

gestationalage,anddurationofrupturedmembranes.Transmissionwas0percent(0/48)

whenHIVRNAwas<500copies/ml.

Thereissomereassurancethatwomenforwhomtherapywouldbeconsideredoptional

(low viral load and high CD4 count) may be treated safely with transient AZT

monotherapyduringpregnancy[Bardeguez,Abstract12233].

Followup of 226 PACTG 076 participants revealed no difference between AZT and

placeborecipientsinprogressiontoAIDSordeath,withameanfollowupof2.4years.

Incorporation of prenatal AZT into clinical practice has had dramatic benefits, as

evidenced by two large observational studies. The North Carolina study [Fiscus,

Abstract 33162]reportedadeclineintransmissionfrom25percentin1993to3percent

in1997,andCDCdatafrom29StatesmonitoringpediatricHIVinfectiondemonstrated

that overallrates of perinatally acquiredAIDS decreased by 44 percent from 1992 to

1995 [Lindegren, Abstract 23306]. A number of missed opportunities for using this

therapy were identified. The CDC reported that, for children with perinatal HIV

infectionbornin1995and1996,only88percentofmothersweretestedbeforedelivery

andonly62percentofcaseshadreceivedAZT[Lindegren,Abstract23306].Inadequate

counseling/testing,poorornoprenatalcare,andsubstanceabuseappeartobethemajor

problems.Knowledgeoftheresultsofthe076studycorrelateswithwillingnesstotake

AZT[Reiter,Abstract60272].

Hankins and colleagues, in the Canadian Women's Study, found that the advent of

perinataltransmissionprophylaxishasnotresultedinanincreaseinpregnancyrates,but

elective abortionshavedeclinedasmoreHIV-infectedwomenchoosetocontinuetheir

pregnancies[Abstract24199].

Surprisingly few reports at the WorldAIDS

Conference dealt with combination antiretroviral therapy in pregnancy, and none had

resultstoreportfromanyoftheclinicaltrialsofthesecombinationsnowinprogress.A

surveyofPACTGsitesfoundthatonly6.1percentofpregnantwomenreceivedprotease

inhibitorsoverthepastyear[Bartlett,Abstract32444].Smallcaseseriesofhighlyactive

antiretroviral therapy (HAART) in pregnancy generally reported reductions in

HIVRNA to low or undetectable levels. The drugswere well tolerated, but adherence

may be a special problem in the first trimester [Beckerman, Abstract 12151; Kramer,

Abstract12152;Morris,Abstract32419].Onamorecautionarynote,aSwissreviewof

37 pregnancies with combination antiretroviral exposure noted adverse events occurring in 21/37 women and 17/30 babies; many of these were mild or of questionable

relationship to the medications. Of possible concern, however, was a high rate of

prematurebirth(11/30infants)[Lorenzi,Abstract32453].

Antiretroviral Therapy and Pregnancy

Clients may now participate in

research even iftheydonot

receive care at an AIDS

Clinical Trials Group (ACTG)

research site. Until recently,

participation was possible

only for those linked to the

ACTG locations. NIH is

providing funds and Title IV

grantees are providing support

services that further improve

access forthosewhowishto

participate in research.

Continued on Page 6

5

Access to Research

for Women,

Infants, Children,

and Youth
Cesarean Section and Vertical Transmission

Other Risk Factors For Vertical Transmission

NaturalHistory:GenderandViralLoad

Much

publicized findings regarding perinatal transmission have

come fromseveral studiesshowing furtherreducedriskof

perinatal transmission(inaddition toAZT) with Cesarean

section performed before the onset of labor or rupture of

membranes. Mandelbrot found that, among 902 mothers

receivingAZT,electiveC-sectionwasassociatedwithless

transmission than emergent C-section or vaginal delivery

(0.8 percent, 11.4 percent, and 6.6 percent, respectively)

[Abstracts 23272; JAMA 1198;280:55]. By multi-variate

analysis, the adjusted odds ratio was 0.2 (95 percent CI

0.0,0.9) for elective C-section. Semprini, reporting on

results from an international clinical trial of planned Csection at 38 weeks vs. planned vaginal delivery, found 3

percent transmission in those delivered by C-section vs.

10.3percentdeliveredvaginally[Abstract23599].Finally,

ameta-analysisusingindividualpatientdatafromprospectiveEuropeanandNorthAmericanstudieswithatleast100

mother-infantpairs(n=8533)foundthatelectiveC-section

significantly reduced perinatal transmission rates independent of antiretroviral treatment (OR 0.4) [Read,

Abstract23603].

As impressive as these results sound, and contrary to the

apparent"takehome"messagefrommanynewsreports,itis

prematur e t o recommen d routin e

C-section for HIV-infectedwomen.Innone of the studies

were women treated with antiretrovirals other than AZT,

and viral load measurements were not reported.

Furthermore, maternalmortality is increased fivefoldwith

C-section;postoperativecomplicationshavebeenreported

in 31 percent of HIV-infected women, three times more

than in HIV-negative controls. The widespreaduseofthis

strategy in developing countries raises further concerns. It

seems very possible, however, that a subgroup of women

who are unable to achieve appropriate reductions in viral

burden may reasonably consider the option of operative

delivery. Morestudyisneeded.

There is new evidence that breastfeeding

should be avoided when the mother is HIV infected. A

Malawian study followed 1,012 HIV-uninfected infants

(98% were breastfeeding) for a median of 32 months and

reportedacumulativehazardofinfectionof9.6percentby

18 months of life, remaining constant over that time

[Abstract 23270]. New projections of the globalburden of

perinatal transmission suggest that breastfeeding could

account for up to one-half of newly infected children in

1998[Nieburg,Abstract13591].

Two reports [Philpott, Abstract 21107;

Salvatori, Abstract 60834] suggest a role for the CCR5

receptorinperinataltransmission,withdecreasedtransmissioninthepresenceofadefectiveCCR5allele;athirdstudy

byPrincipifoundnosuchassociation[Abstract12161].

Inalargecohortofpregnantwomenin

Malawi,theprevalenceofbacterialvaginosis(BV)was29

percent, and only 11percent hadnormalvaginalflora.BV

wasassociated withHIVseroconversionduringpregnancy

(adj OR 3.7), and perinatal transmission increased from 4

percent with normal vaginal flora to 28 percent with BV

[Taha, Abstract 23347]. Despite the enormous progress in

reducing perinatal transmission, the global burden of this

problemremainsstaggering.Itisestimatedthatasmanyas

816,000 vertically infected infants will be born in 1998

[Nieburg,Abstract13591].Theoverwhelmingmajorityof

these are born in developing countries where there is

limited access to all of the therapies suggested above.

Bridgingthisgapremainsonlyadream.

Severalintriguingstudieshavereportedgenderdifferences

in viral load that could have implications for starting

antiretroviraltherapy. In a study from the ALIVEcohort,

Sterlingetal.lookedatthenaturalhistoryofHIVinfection

after seroconversion in women versus men [Abstract

13379]. When controlled for age and length of followup,

women had consistently lower HIV RNA levels after

seroconversion, and this difference persisted throughout

followup.Initialmedianviralloadafterseroconversionwas

approximately 69,000 in men and 15,000 in women.

Differencespersistedinasubgroupofrapidprogressors.In

a second analysis from the ALIVE study, Farzadegan

performed a cross-sectional comparison of viral load at

baseline and a follow-up visit 4.6 years later [Abstract

13384]. Median viral load in women was approximately

one-half thatinmen.AthirdstudyfromOntarioexamined

viralloaddifferencesbygenderin5,826individuals;when

adjustedforantiretroviraltreatment,asignificantdifference

in viral loads remained [Brabazon, Abstract 42474].

Womenhadalowermedianviralloadandweremorelikely

to have viral burden below detectable levels. With most

studies showing no difference in pathogenesis or rate of

progressionbygender,thesestudiesmaypromptreconsiderationofguidelinesforinitiationofantiretroviraltherapy.

Breastfeeding.

Chemokines.

BacterialVaginosis.

6

Continued from Page5.. . CLINICAL CARE OF WOMEN LIVING WITHHIVDISEASE
GenitalTractHIV

A number of studiespresented at the XII WorldAIDS Conference examined genital

tract HIV and added to the growing body of data indicating that the genital tract

represents a distinctreservoirofinfection. There maybemore heterogeneity of viral

sequences in the genital tract as compared toplasma[Philpott, Abstract 11169; Fang,

Abstract32279].Differencesingenotypes,quasi-species,drugresistantmutations,and

viral loadssuggestthatselectedHIVvariantsareactivelyproducedinthegenitaltract

[Ellerbrock, Abstract 23442]. In two patients from the WIHS cohort, viral load was

moreeffectively reducedandevolutionofresistantmutantsmorelimitedinthegenital

tract as compared to plasma, and it is possible that there are different antiretroviral

pharmacokineticsanddifferentreplication dynamics in the two sites[Fang,Abstract

32279]. InasymptomaticwomenfromtheHERSstudy(n=89),genitaltractshedding

wasassociatedwithlowerCD4countsandgenitaltractinflammation,independentof

thepresenceofSTDs[Mayer,Abstract[23450].Thesefindingshaveimplicationsfor

treatment,aswellasforpreventionofsexualandperinataltransmission.

The most common genital tract

infectioninHIV-infectedwomenishumanpapillomavirus(HPV).Numerousstudies

have documented increased rates of lower genital tract neoplasia correlated with

evolving immunosuppression in these women. Several reports in Geneva focusedon

the effects of viral load and antiretroviral therapy on HPV infections and cervical

dysplasia. A small Italian study (n=40) examined the impact of HAART on genital

warts[Giovanna,Abstract22192].Aftercompletesurgicaltreatment,relapseoccurred

in0percent,10percent,and75percentinpatientstreatedwith3drugs,2drugs,andno

antiretroviraltherapy,respectively(p<0.01).Therewasasignificantdifferenceinviral

load between patients with and without relapse. A French study of 85 women with

advanced HIV disease who were started on triple combination therapy (including a

protease inhibitor) and who were examined both cytologically and colposcopically,

noted a decrease in SIL (cervical dysplasia) from 66 percent to 49 percent after a

mediandurationof5monthsoftherapy[Schmitz,Abstract22312].Theprevalenceof

HPV didnotchange.IntheWIHScohort (n=1483) cervicovaginalHPVinfectionby

PCRwascommonatalllevelsofHIVviralloadandCD4count.Theprevalencewas

highest in womenwithCD4counts <200/mm3 regardless of viral load butwas also

uniformly highwhenviralloadwas>100,000copies/ml. ThissuggeststhatlowCD4

countsandhighviralloadsmaybothbeimportantintheactivationofHPVreplication

[Palefsky,Abstract22313].AsimilarassociationbetweenviralloadandHPV,aswell

ascervicaldysplasia,wasreportedbyShahfrom the HERS cohort[Abstract22317].

Finally, alsofromHERS, a small group of women who initiated HAART was compared with an equal number of women with similar baseline CD4 count and HPV

infection status who did not take HAART [Duerr, Abstract 60289]. There was no

difference in the twogroupswithrespect topapsmearresults,acquisitionofHPV, or

persistence of HPV present at baseline, changes in the number of HPV types, or

changes in theamountofHPVpresentafter 6-12 monthsoffollowup.These studies

suggestthatHIV-infectedwomenshouldcontinuetobefollowedcloselyforevidence

oflowergenitaltractneoplasiaregardlessofARVtherapyorHIVRNAlevels.

Human Papilloma Virus/Cervical Dysplasia

Seven Special Projects

of National Significance

grants are funding

implementation of

innovative models of

care for women living

with HIV/AIDS.

Integration and

coordination of care,

care for substance

abusers, client

education, and

counseling and testing

are principal elements.

New Models of

Care for Women
Dorothy Mann

Most of the HIV-positive womenweseearemothers.They

are,by-and-large,poorwomenofcolorwhogotthisdisease

primarily throughIDUorsexwithanIDU. These women

need hot water, pest control, heat, refrigerators, funeral

expenses the things that the rest of America takes for

granted. I remember a woman and child, now in our

housing program, who had been relegated to a basement

becausetheywereHIVpositive.

What do you mean by “primary care”? Clinical care [for

HIV] is not just basic primary care. If you have HIV, you

needaspecialist.

To get women the care they need, we recognize them as

patients in their own right and as mothers. We help them

helpthemselves,andrespecttheircultures.Wesupporttheir

role in the family and, simultaneously, we work to keep

women in, especially for gynecological care. Most

infectious disease doctors don’t know how to do a pelvic

exam. You have a double whammy here with HIV and

OB/GYN issues. Think about the reproductive health

needs of HIV-positive women! How do they deal with

decisions around having another child? How is their

contraceptivebehavioraffected?

Our organization has put “assistant case managers” in

place—women from the community trained to work with

familiesintheirhomes. Assistantcase

is Executive Director of

the Family Planning Council in

Philadelphia,which facilitatesdeliveryofa

broad range of services to women and

families through a network of hospitals,

clinics, and community-based organizations. The Family Planning Council is

funded through a variety of sources,

includingTitleIVoftheRyanWhiteCAREAct.

Describeyourpatientpopulation.

Howdoyougetwomentheprimarycaretheyneed?

—

managershavebeen

trained to provide support on basic things: how to take a

temperature, when to call the doctor, what some signs of

illnessare,howtorecognize and describe symptoms. By

training andemployingwomenwhomourclientsperceive

as“justlikethem,”ourclientshavebecomemoresophisticated in dealing with their own personal health and the

health care system. In our evaluation, women with this

supportwenttotheemergencyroomandtothehospitalless.

Basically,theywerehealthier.

Ifyoudonothingmorethansay“dothis,”youarewasting

your breath, so we continually “rehearse” and reinforce.

The“rehearsing”hastobeindividualizedandrepeatedover

andoveragain. Inthe generalpopulation, patients tend to

tell providers whattheywanttohear,andeverybodyknows

that the vast majority of people who agree to finish their

antibiotics don’t. An enormous amount of time and

individualized attention are required to work through the

importanceof takingmedicines,especiallywhenmorethan

onepersoninthehouseholdisonmedications.

Today,moreofourclientsareuninsured. Also,moreofour

family planning clients agree to testing, since we supplemented our confidential testing with anonymous testing.

This illustrateshowsensitivewomenaretoconfidentiality.

Inthe past 18 months,chlamydiahasincreasedandweare

testing more for it. IDU

hasnotchanged, but the

need for mental health

serviceshasincreased.

How do you help your clients adhere to treatment

regimens?

Whatchangesinyourclient base have you seenduring

thelasttwoyears?

8

By training and employing women whom our

clients perceive as “just

like them,” our clients

have become more

sophisticated in dealing

with their own personal

health and the health care

system. In our evaluation, women with this

support went to the

emergency room less and

to the hospital less.

Basically, they were

healthier.

Dorothy Mann

FOUR PERSPECTIVES FROM

WOMEN SERVING WOMEN
Spending decisions for

more than 60 percent of

allCARE Act dollars are

made byTitle I Planning

Councils and Title II

Consortia. The

HIV/AIDS Bureau is

cooperating with the

AIDS Policy Centerto

respond to theskills needs

of women involved in

local planning by

developing a training

curriculum that assures

their full participation in

the planning process.

9

ContinuedonPage 10

Women and

Local Planning

What is wrong with the way we have traditionally

addressedtheneedsofHIV-positivewomen?

Barbara Aranda-Naranjo

DoestheCenterserveprimarilyHispanic

families?

Whyiscareforthe“affected”soimportant?

You are suggesting

a very low awarenesslevelofHIV.

Doyourclientshaveaccesstoantiretroviraltherapy?

Our society tends to worry about women when they are

pregnant, and not when they are not. The reason is that

what we are really concerned about is the child. Our

women know this. The structures put in place both in

prevention and carewere,foralongtime,puttherebymen

for men, and women are nowhere near caught up. When

youcomeinsecond you are treated in a secondclassway.

Thereisnoquestionthatwehavedonemuchmoreprevention work among teens and gay men than among women.

For a very long time,mostsubstanceabusepreventionand

treatment responded to the needs of men. Recently, our

emphasis has been on pregnant women. So women as

womengetlostasecondtime.

Title IV has done a great job—and, yes, my organization

getsaTitleIVgrant—ofcreatingfamily-centeredcare,with

the childastheindex. The purpose has been toeliminate

the need to go all over town for core services. But as a

society, we have got to recognize HIV-positive women as

mothers with a lot of basic needs including reproductive

healthneeds.

Yes,inmostcases,we’reprovidingcaretoasingle,female

head of household between 18 and 35, and her children.

TheyallhaveatleastoneHIV-infectedchild.

Our clients are American citizens or legal residents, but

mostspeaklittleEnglishandtheircultureismoreMexican

thanAmerican. Notoneofthemreceivedregularprimary

care before testing positive. The primary transmission

categoryhasalwaysbeenheterosexualcontact.

Our families are very poor, and we are seeing more and

morewhoarecompletelydestitute. With thechangeinthe

laws,theyhavetoworktogetwelfare,butmostaretoosick

to work and not sick enough to get SSI. In Texas,

applications to receive SSI are denied at least five times,

anyway. Illiteracy is high. These families are completely

dependentoncharity.

These women see themselvesastheprimarycaregiverfor

their families. They don’t see their children as separate

fromthem.Theparentwouldfeelguiltyiftheyweregetting

care, but their uninfected children

were not. The parent

wouldfeelangryand

hurtiftheyweretold

they could get care,

but their child could

not. They would be

completely offended

if you referred their

non-infected child to

anotherprovider.

Most of our clients

are livingwith HIVpositive significant

others who refuse to

getcare. Theyknow

absolutely nothing

about medical care

or HIV. We have to

dea l wit h this

because, in the

Hispanic culture,

women turn to their

significant others to

makedecisions.

Yes, and these individuals live with fear of everything,

regardless of HIV, becauseofignorance.Thepeoplelivein

unincorporatedneighborhoods. WeareusingTitleIVand

SPNSmoneytopromotehealthinthese“Colonias,”where

therearenostreetsigns,noaddresses,no water, no lights.

Our “promotores” go into these communities, develop

trust,andthentalkaboutbasichealthandpreventionissues.

We also collaborate with community-based organizations

in these neighborhoodstoreinforcewhat we say whenwe

aren’tthere.

For the moment, clientswhochoose to be on combination

therapyareabletogetdrugsthroughADAP.

is Senior Research Nurse,

University of Texas Health Sciences Center San Antonio.

She is Assistant Director, South Terrace

AIDS Center for Children and Families,

which receives grants from Title IV, SPNS,

andtheStateofTexas.
10

Continued from Page9... FOUR PERSPECTIVES ONWOMEN SERVING WOMEN

However,therearerumorsthattheTexasADAPwillgotoa

lotterysystembecauseofawaitinglistfordrugs.

Adherence is a huge problem.

These individuals don’t

understand resistance or the

need to see a doctor,partlyfor

cultural reasons. In Mexico,

individuals get drugs from

pharmacists without ever

seeing a physician. And inour

area, they are accustomed to

going to the emergency room

for drugs “when they

feel bad.” The idea of taking

medications when they feel

OKisforeign.

These individuals are proud.

You don’t talk about your

disease! YouNEVER, in their

culture, talk about anything

where someone will lose face.

So they want to keep their

health issuesveryquiet.Itisverydifficultforthesewomen

to be honestwiththeirphysician.Theythinkitissaferifno

onefindsouttheyaresick.

BeatrizGrinsztejn is currentlystudyingacohortof500

HIV patients, of whom about 200arewomen

attheOswaldoCruz Foundation Hospital in

Rio deJaneiro,Brazil. The Foundation is the

largest organization of its kind in Latin

America. ItincludesBrazil’slargestresearch

institute, a hospital, a public health school,

andseveralclinics.

Is the epidemic among women in Brazil

relevant to what we face in the United

States?

WhatpreventswomenfromgettingcareinBrazil?

IstestingreadilyavailableinBrazil?

How?

Dowomenhavelessaccesstocarethanmen?

Whathelpskeepthemincare?

Actually, the similarities are striking. There are about

120,000 persons living with AIDS in Brazil but, as in the

United States, HIV is not reportable. AIDS is growing

amongwomenandamongthepoor,andintheSouth,where

it is growing among injection drug users. Most cases are

locatedinthebigcities—Rio,SanPaulo,Brasilia.

The ratio of infections is 2:1 (men to women); in 1984, it

was 32:1. Most are really poor. About 30 percent suffer

domestic violence. Addiction isaproblemincertaincities,

but heterosexual transmission is the risk factor for most

women in Rio. Most have significant others and children

who are infected but, since 1996, we have really reduced

transmissionthroughAZTduringpregnancyandlabor.

The biggest problem is finding out who is HIV positive.

Then there’s the problem that OB/GYN specialists don’t

wanttotreatthesepoor,HIV-positivewomen,sotheywon’t

learnhow. The qualityofprenatalcareislow. Physicians

arenoteducatedtotalkaboutSTDs.

Yes.We havemanyanonymouscounselingandtestingsites

but they’re underutilized. Women don’t know they are at

risk. Teaching women about HIV is difficult. Their

educational level is low. Peer counseling and community

workarenotatraditioninBrazilandarejustbeginning. We

usethemedia,butthechurchfightscondomuseandmakes

itverydifficulttotalkaboutsexuality. So,wearetryingto

educatethephysiciansfirst.

Brazil is using a loan from the World Bank to fund basic

HIV care training and to support a national training on

vertical transmission. Insomecases,thereisagreatdealof

pressure from local authorities togettraining, and in others

thereisnot. Participationisnevermandatory.

OB/GYN physicians are much less interested in training

than primarycare physicians. Theyareafraid they’llhave

to treatanHIV-positivepatient. Theyareactinglikemany

primary care doctors acted 15 years ago. This is a huge

problem.

I don’t believe that they have less access to care, but they

have moredifficultycontinuing care. Womenalwayshave

other responsibilities—children, in particular. From my

point of view—and this is completely observational—women have more problems with adherence,

dealingwithside-effects and staying in care, because they

arealwaystakingcareofsomeoneelse.

In my hospital we give them a bag of basic foods once a

month. Theyhave tocometothehospitaltogetitandthen

we see them. We also provide formula, milk, etc.

In our community,

people still believe you

can get HIV from

mosquitoes or going

into a swimming pool.

One woman thought

being HIV positive was

a good thing, so didn’t

come back for care

until she became

symptomatic.

Barbara ArandaNaranjo
11

Continued on Page 12

Areantiretroviralsavailable?

Judith Walker

Describe the five countyareawhereyou

coordinated case management for

peoplelivingwithHIV.

HowmanyHIV-positiveindividualsdoyouserve?

CanHIV-positivewomengetcompetentcarelocally?

Wheredopeoplegoforcare?

Yes.Thegovernmentprovidesdrugs,freeofcharge. South

American countries collaborate to get bulk purchase

discounts. Only efavirense, nevirapine, and delavirdine

aren’t available and the

Ministry of Health is in the

processofbuyingthem. There

are about 300 distribution

points for AIDS drugs

nationwide,andallofthemare

within primary care provider

sites.

Most of the women are on

antiretroviral therapy. We

begin antiretroviral therapy

when the CD4 count is <500,

or viral load is over 10,000.

MostHIVpatients are onPCP

prophylaxis. Incidentally, the

mostsignificant opportunisitic

infection in Brazil is

Tuberculosis.

Compliance is very bad. In

Brazil, care is physiciancentered. We don’t have social workers to help with

adherence. I am a specialist andspend40-45minuteswith

each patient, but many do not do this. If the physician is

committed,itreallyhelps. Ifnot,it’sabigproblem.

The population of all five counties combined is less than100,000. Unemployment

is high. Most of our factories have closed. Our people

dependonlow-payingservicejobs to makeends meet and

lotsofpeoplehavetoworktwoorthreejobs.

Atanygiventimewemightbeservingatotal of20individuals in all five counties. About a third are women who

almost always contract HIV through heterosexual contact

with men who have workedandtraveledoutside our area.

These women are typically young, low-skilled, and in

relationships with people who are also HIV positive.

Almostallhavechildren.

Women in ourregiontypicallybecomeawareoftheirHIV

statusafter they or their partner begin to show symptoms.

Most do not have health insurance, so they don’t go to a

doctorunlesstheyarereallyverysickoruntiltheyareinthe

second trimester of pregnancy. Women who do get care

more regularly usually see physicians who never imagine

thatHIVcouldbeanissue,sotheydon’ttest.

Notthekindofcaretheyneed. Noneofthelocalphysicians

has had the case loads that generate broad experience in

treating people withHIV. Some reallybadmistakes have

occurred here because of this. Many local physicians

wouldprefernottodealwithHIV-positivepatients. When

we have offered training in the past, mostofthem haven’t

beeninterested.

The majority travel to Duluth, Minnesota to get care from

infectious disease specialists. Depending on where they

liveinourregion,thiscanbe300miles,roundtrip. I think,

though,thatevenifqualifiedcarewasavailablehereinour

area, a lot of people would continue to go to Duluth,

because they don’t want anyone to know they are HIV

positive.

is Director of the Douglas County Health

Departmentinrural,northern Wisconsin. Previously, as

educationandcasemanagementcoordinator,sheservedas

the only HIV/AIDS case manager for

Douglasandfoursurroundingcounties.

So,theissueisqualitycareandconfidentiality?

Yes. Ifyougotoalocaldoctororemergencyroom,people

knowit,andtheyknowwhy. Thereisalotoffearhere,and

thecommunitydoesnotunderstandHIVatall.Justrentinga

houseorapartment in thisareaisreallyhardif the landlord

know s y o u a r e H I V

From my point of

view—and this is

completely observational—women have

more problems with

adherence, dealing

with side-effects and

staying in care,

because they are

always taking care of

someone else.

Beatriz Grinsztejn

Just renting a

house or apartment in this area is

really hard if the

landlord knows

you are HIV

postive.

Judith Walker
ispublishedbytheHealthResourcesand

ServicesAdministration,DepartmentofHealth

andHumanServices.Allinformationcontained

hereinisinthepublicdomain.

Pleaseforwardcomments,lettersandquestionsto:

OfficeofCommunications

HIV/AIDSBureau,HRSA

5600FishersLane,Room7-46

Rockville, MD20857

Phone:301-443-6652

Fax: 301-443-0791

orbyE-mailto:koneill@hrsa.dhhs.gov

HRSACareACTION

HRSACare

12

A panelconvenedbytheInstituteofMedicine(IOM)ofthe

National Academy of Sciences recommends HIV testing

and notification of resultsforallpregnantwomenaspartof

thebatteryofstandardprenataltests. UndercurrentFederal

guidelines,doctorsareencouragedtoprovideHIVcounselingandsuggestanHIVtest. The IOMpanelrecommends

that pretest counseling be reduced to diminish the burden

onprovidersandthatwomenbeinformedthattheywillbe

testedunlesstheyspecificallyobject.

The IOM provided its recommendations in fulfillment of

statutory requirements. The Ryan White CARE Act

Amendmentof1996,PL104-446section2626(d),requires

thattheSecretaryoftheDepartmentofHealthandHuman

Services determine whether a set of interventions has

become standard. Section 2628 requires the Secretary to

request a reportfrom the IOMbefore making the determination.

After reviewing the report, the Secretary must determine

whether it has become routine practice in the provisionof

health care in the United States to(1)testinfantsforHIV

whose mothers were not tested during pregnancy; (2)

adhere to statutory requirements for the disclosure of the

infant’sHIVtestresulttospecificpersons;(3)provideHIV

counseling to persons receiving aninfant’s test result;and

(4) provide results to pregnant women who have received

prenatalHIVtesting.

The IOM panel recommendation is controversial. Some

experts favor testing of only those at highest risk. Others

are concerned about the implications on the privacy of

prospective mothers and the reduction of pretest counseling. At the time of publication, it was not known what

determination the Secretary would make nor how the

Congresswouldrespond.

Routine HIV Tests for Pregnant Women

— Secretary’sDetermination Expected in December

Continued from Page 11... FOUR PERSPECTIVES FROM WOMEN SERVING WOMEN

positive. Most of the patients I’ve dealt with over

theyearshaveorderedmedicationsthroughthemailtoavoid

gossipatthelocalpharmacy,andIdon’tblamethem.

They live from one crisis to another, and their biggest

problem is thattheyhavetoomanyroles. Theyareparents,

care givers for their significant other, and often they are

helpingtheirparents.

Theyhavetodealwithpregnancy,gettingkickedoutoftheir

apartment, problems with their children. Andother things

are constantly coming up. Dental problems, for instance.

Even if we manage to come up with the money to pay for

their dentalcare,mostofthedentistsinthisareawon’ttouch

them.

Casemanagementhaschangedagreatdeal,sincepeopleare

living longer. Instead of teaching people how to live with

severeillnessandcopewithdying,wegetthemtheservices

that they need to manage their daily lives. We help them

make decisionsaroundissues likepregnancy, birth control,

andmentalhealth.

Adherence,beingsuchamajorproblem,receivesalotofour

attention. We provide ongoing monitoring, and we work

with ourpatientstoorganizetheirlivesinawaythatmakes

adherencefeasible. Thisissomeofthemostimportantwork

wedo.

Howdobarriersimpactqualityoflifeforthesewomen?

Whatistheroleofcasemanagementinyourareatoday?

IOM Panel Recommends