Breast Cancer Resource Guide for Minority Women

36 Pages·2000·1.6 MB·English

Cancer
Breast
Resouro
Guid

Breast Cancer
Resource
Guide
for
Minority
Women
April 2000
Developed by
THEOFFICEOFMINORITYHEALTH
RESOURCECENTER
^4SERVICE
X
OfficeofMinorityHealth
OfficeofPublicHealthandScience
DEPARTMENTOF
U.S.
HEALTH&HUMANSERVICES
Roclcville,Maryland
OMH
The ResourceCenterprovidesfreeinformationresources
onavarietyofminorityhealthtopics. Callourtollfreenumber
at: 1-800-444-6472, orvisitourhomepageontheInternet
at:http://www.omhrc.gov.

Table of Contents
Introduction 4
NationalOrganizationsandPrograms 5
RiskFactors 9
CommunityOrganizationsandPrograms 10
MammogramInformation 14
EducationalMaterials 15
JournalandMagazineArticles
AfricanAmericans 22
AmericanIndians/AlaskaNatives 24
AsianAmericans 26
Hispanics 28
PacificIslanders 30
InternetResources 31
Introduction
TheOfficeofMinorityHealthResourceCenter(OMH-RC)hascompiledthefollowingResourceGuidefor
thoseinterestedinbreastcancerresources. Thelistsoforganizations,documents,journalarticles, andother
resourcesarerelevanttopersonswithbreastcancer,students,healthcareprofessionals, andresearchers.
OMH-RC
hasnotevaluatedthematerialsinthisresourceguide. Itistheresponsibilityofthereadertoreview
thematerialstodeterminetheirappropriatenessfortheintendedaudience. Inclusiondoesnotimplyendorse-
mentbytheOMH-RC,theOfficeofMinorityHealth,theOfficeofPublicHealthandScience, ortheU.S.
DepartmentofHealthandHumanServices. Organizationsincludedinthislistingshouldbecontacteddirectly
todeterminethecostandavailabilityofpublications,documents,etc.
OMH-RC
iscontinuallyseekinghealthinformationresourcesforU.S.minoritypopulations.
Ifyouareawareofsourcesofhealthmaterialsthathavenotbeenincluded,pleasesharetheinformationwith
OMH-RCbycalling 1-800-444-6472.
National Organizations and Programs
AfricanAmericanBreastCancerAlliance granthealthcentersthrough implementingabreastandcervi-
MN
P.O. Box 8981, Minneapolis, 55435; 612-825-3675 or calcancerreplicationpackagethatsupportscommunityhealth
612-925-2772. centers in collaboratingwith local community organizations,
TheAfricanAmericanBreastCancerAlliance(AABCA)was mediaandtheBreastandCervicalCancerEarlyDetectionPro-
founded by Black women who have had breast cancer. grams.
AABCA is a member-supported advocacy group forwomen
with breast cancer, their families, and the African American TheCelebratingLifeFoundation
community. AABCAhasformedcoalitionswith avarietyof P.O.Box224076,Dallas,TX75222-4076;800-207-0992;
groupsworkingtowardincreasingthesurvivalratesofwomen http://www.celebratinglife org/home
.
affected by breast cancer. AABCA's efforts extend beyond The Celebrating Life Foundation was established on May 3,
Minnesota to include regional and national networks. Some 1995. It is one of the leading foundations in the nation that
activitiesinclude: coalitionbuilding,co-sponsorshipofama- promote breast cancer awareness specifically targetingAfri-
jor local cultural health fair, and participation in numerous canAmericanwomenandwomenofcolor. Theprimarypur-
community events and focus groups. pose isthe promotion ofcharitable endeavors that encourage
the advancement ofknowledge and awareness ofbreast can-
AmericanCancerSociety(ACS) cer risk and prevention in the African American community
1599CliftonRoad,NE, Atlanta,GA30329;800-227-2345; andforwomenofcolor. TheCelebratingLifeFoundationhas
http://www.cancer.org initiated and participated in seminars, workshops, forums,
Foundedin 1913,ACSisanationwidecommunity-basedvol- healthfairs,andotherprogramsandactivitiesrelatedtobreast
untaryorganizationdedicatedtoeliminatingcancerasamajor cancer awareness and education both locally and nationally.
health problem by preventing cancer, saving lives from can-
cer, anddiminishing suffering from cancerthrough research, CircleofLife
education, and service. ACS has conducted activities aimed Formoreinformation,contactyourlocalAmericanCancerSo-
specificallyatminoritypopulations,includingsponsoringcon- cietyorthenationalofficeat800-ACS-2345(800-227-2345).
ferences and publishing reports. ACS has developed preven- http://www.cancer.org
tion,detectionandservice-relatededucationmaterialsinclud- CircleforLifespecificallytargetsandinformsNativeAmeri-
ing pamphlets, posters, handbooks, and audiovisuals that are can women about the importance ofearly detection ofbreast
ethnically sensitive. In addition, Spanish language materials cancer.Theprogrambeganin 1991 andhasreceivedpositive
have been prepared on topics such as smoking, prostate can- feedbackandreceptionby areasacrossthecountry thatare in
cer,breastself-examination,andskincancer.Requestsforma- need of educating this traditionally underserved population.
terialsshouldbemadethroughlocalACSchapters. Thereare The name ofthe educational program denotes the beliefthat
57ACS State (Division)offices andover3,400local offices. "allwomen shouldbe able to complete thefull circle oftheir
Bulkquantitiesofpublications are availableforafee. lives."Theprogramincludesatrainingkitwithguides, infor-
mation, andavideo.
AmericanSocietyofPlasticandReconstructiveSurgeons
444 East Algonquin Road, Arlington Heights, IL 60005; ENCOREplusBreastandCervicalCancerProgramofthe
YWCA
847-228-9900; 800-635-0635; http://www.plasticsurgery.org
This nonprofit organization provides information on breast ContactEncorePlusat800-95EPLUS(800-953-7587)or con-
YWCA
reconstruction options and a network of volunteer physi- tact your local for programs and resources in your
cians who are available to participate in panel, debate, and area. TheENCOREplusBreastandCervicalCancerProgram
YWCA
educational forums. ofthe is a program designed to meet the needs ofall
women, in particular women ofcolor, women of limited in-
BreastandCervicalHealthEducationandIntervention come,andolderwomenwhodonotutilizetheproperpreven-
Initiative tive health services. The program includes two basic compo-
NationalAssociationofCommunityHealthCenters,Inc., 1330 nents: breast and cervical health education and referral to
New Hampshire Avenue, NW, Suite 122, Washington, DC screening; and post diagnosis and peer group support.
20036; 202-659-8008;Fax[phone]; http://www.nachc.com
The Breast and Cervical Health Education and Intervention
InitiativeisacooperativeagreementwiththeCDCtoincrease
the utilization rates of mammography and Pap tests among
Hispanic/Latino women age 50 and over. The program will
accomplishthisby increasingthe capacityofcommunity/mi-
InterculturalCancerCouncil NationalActionPlanonBreastCancer(NAPBC)
1720Dryden,SuiteC,Houston,TX77030; 713-798-4617; Office of Public Health and Science's Office on Women's
http://icc.bcm.tmc.edu Health, Room 718F, 200 Independence Avenue, SW, Wash-
TheInterculturalCancerCouncil(ICC)iscomprisedofanum- ington,DC20201; 202-401-9587; Fax[phone]. http://
berofnationalminority andnon-minority organizations.The www.napbc.org
mission of the ICC is to develop and promote policies and NAPBC was initiated in 1993 in response to the 2.6 million
programs to address the high incidence ofcancer and lower signature petition calling for a coordinated national strategy
survival ratesprevalent in the minority community. The ICC to combat breast cancer through public and private partner-
willworkto reduce the higherincidence, sufferinganddeath ships. The mission ofthe NAPBC is to serve as a catalyst to
from cancer among minorities, culturally diverse and medi- ensure rapid progress in areas of breast cancer knowledge,
cally underserved populations. research, policy, and services.
TheMayors'CampaignAgainstBreastCancer NationalAllianceofBreastCancerOrganizations
U.S. ConferenceofMayors(USCM). 1620Eye Street, NW; 9East37thStreet, 10thFloor,NewYork,NY10016; 888-80-
3rdFloor;Washington,DC 20006; 202-861-6753; Fax202- NABCO (888-806-2226); Fax [phone]; http://
887-0652or202-293-2352. www.nabco.org
Started in 1997 by the United States Conference of Mayors The National Alliance of Breast Cancer Organizations
(USCM),theMayorsCampaignAgainstBreastCancerisdedi- (NABCO)istheleadingnon-profitcentralresourceforinfor-
catedto savinglivesthroughearlydetectionofbreastcancer. mation and education about breast cancer and a network of
USCM has taken the lead on this issue because mayors be- more than 400 organizations providing detection, treatment,
lievebreastcanceris amajorpublichealthproblemthatthey andcaretoAmericanwomen. Foundedin 1986,NABCOof-
can help to address. To date, more than 260 mayors have fersinformation,assistance,andreferraltoanyonewithques-
joinedtheCampaignAgainstBreastCancertoincreaseaware- tions about breast cancer, educates the public about the dis-
nessandscreeningintheircommunities. Informationexchange ease, links underserved women to medical services, and acts
forms the core of the USCM campaign so that mayors may as a voice for the interests and concerns of breast cancer
takeadvantageofeachother'sexperienceinpromotingbreast survivors and women at risk. Publications include the quar-
cancer awareness. While mayors are free to select theirown terlyNABCONews, whichupdatesprofessionalsandthepub-
local activities, each year the Mayors' Campaign Against licaboutdevelopmentsinresearch,programs,andpolicy,and
BreastCancerhas,withintheoverallgoalofencouragingmore the annual Breast Cancer Resource List, which compiles
womentoseekscreening,aspecificnationalfocus. TheBreast books, brochures, hotlines, andvideo resources useful to pa-
Cancer Resource Committee is advising USCM on the cam- tients and professionals.
paign,particularlyinthedevelopmentofactivitiestoincrease
screeningamongprioritypopulations. TheAmericanCancer NationalAsianWomen'sHealthOrganization(NAWHO)
SocietyandtheZenecaHealthCareFoundationsupportvari- 250MontgomeryStreet,Suite1500, SanFrancisco,CA94104;
ouscampaignactivities. USCMalsocollaborateswiththeIn- 415-989-9747; Fax[phone]; http://www.nawho.org
NAWHO
tercultural Cancer Council to increase breast cancer aware- is a non-profit, community-based health advocacy
ness among priority populations. organizationcommittedtoimprovingthehealthstatusofAsian
women and girls. NAWHO addresses factors that impact
physical, emotional, social, and spiritual well-being. Major
programsatNAWHOincludetheAsianWomen'sReproduc-
tiveandSexualHealthEmpowermentProgram;theSoutheast
CancerNet, a service ofthe NationalCan- Asian Women's Health Project, and the Asian American
Women's Breast Cancer Project. The Asian American
cerInstitute (NCI), has compileda listof Women's Breast Cancer Project seeks to increase awareness
nationaladvocacyandvoluntaryorganizations. andknowledgeofbreasthealthandbreastcancerissueswithin
Asian American communities and access to early detection
andtreatmentservicesforAsianAmericanwomen.Theproject
To obtain this list, "National Organizations utilizes amultilevel approach: providingresourcesandinfor-
mation, conductingtrainingsforhealthcare providers in cul-
that OfferServices to People with Cancerand turalsensitivityandcompetence,andaffectingnationalpolicy
TheirFamilies,"aswellasotherresources, visit regardingAsianwomen andbreastcancer. NAWHO hases-
tablishedanational toll-free information and referralnumber
CancerNet at http://cancernet.nci.nih.gov/ to provide Asian American women with breast and cervical
supportjesources/support cancerinformationinEnglishandfourAsianlanguages:Lao-
tian,Korean,Vietnamese,andCantonese.Asianlanguageca-
pabilityhas longbeenmissingfromhealthinformation lines,
makingNAWHO'shotline"1-888-NAWHO-18"thefirstna-
tional service ofitskind. The hotline allowsAsianwomento NationalBreastCancerCoalition
leaveamessageinoneofthefivelanguagesfortrainedhealth 1707 L Street, NW, Suite 1060, Washington, DC 20036;
translators, requesting a local screening provider in one of 202-296-7477; Fax[phone]; http://www.nbcc.org
our eight partner states or health education brochures. The TheNationalBreastCancerCoalition(NBCC)isagrassroots
translatorswillcallthembackwiththerequestedinformation advocacy organization dedicated to eradicating breast can-
and answer any other questions that the clients may have cer. Formedin 1991, morethan500organizationsand60,000
about the diseases. individuals strong, the National Breast Cancer Coalition has
brought aboutfundamental change, increasingfederal appro-
NationalBlackWomen'sHealthProject priations for breast cancer research sixfold, precipitating an
600 Pennsylvania Avenue, SE, Suite 310, Washington, DC unprecedented breast cancer research program administered
20003; 202-543-9311; Fax [phone]; http:// by the DepartmentoftheArmy andbringingaboutand over-
www.nbwhp.org seeing the National Action Plan on Breast Cancer (a public/
The National Black Women's Health Project (NBWHP), a private partnership). The NBCC focuses on three goals: re-
health advocacy organization, was established by Byllye search, access, and influence.
Averyin 1981,andopeneditsfirstofficesinAtlanta,Georgia,
in1984.NBWHPwasfoundedonthepremisethatBlackwomen NationalCancerInstitute
needed to address how negative socioeconomic factors ag- NCIPublicInquiriesOffice,Building31,Room10A03,31Cen-
gravate their health problems by causing extreme stresses. terDrive,MSC2580,Bethesda,MD20892-2580;
RunbyBlackwomenforBlackwomen,NBWHPiscommitted 301-435-3848;http://www.nci.nih.gov
to improving the health status ofBlackwomen through self- The National Cancer Institute (NCI) is the Nation's primary
helpandempowerment. In 1996,NBWHPmoveditsnational agency for conducting and coordinating federally sponsored
headquarterstoWashington, DC, tobringtheorganizationto research on the diagnosis, treatment, and prevention ofcan-
thecenterofthepublicpolicyarenawhilemaintainingitscom- cer. NCI has established a cancercontrol effort that empha-
NBWHP
munitybase. isorganizedaroundacoreprogramof sizessmokingpreventionandcessation, dietary modification
services that is offered to our members, ourconstituents and toprevent cancer, early detectionofcancerthrougheffective
the general public: Self-Help Group, Walking for Wellness, screening, and widespread application ofthe latest achieve-
Substance Abuse Prevention, Public Policy and Education, ments in treatment research. Two ofthe services NCI offers
SisterReach,andVitalSigns,NBWHP'snewsmagazine. are listed below: the Cancer Information Service and
CancerNet™.
NationalBreastandCervicalCancer
EarlyDetectionProgram •CancerInformationService
Centers for Disease Control and Prevention (CDC); 4770 Building31,Room 10A-16,9000RockvillePike,Bethesda,
BufordHighway,NE,MailstopK-64,Atlanta,GA30341-3724; MD20892. 800-4-CANCER(800-422-6237).
770-488-4751; http://www.cdc.gov/cancer/nbccedp/index.htm http://cis.nci.nih.gov
The Breast and Cervical Cancer Mortality PreventionAct of TheNationalCancerInstituteofferstheCancerInformation
1990authorizedtheCDCtoimplementcriticalbreastandcer- Service(CIS),anationalinformationandeducationnetwork.
vical cancer screening services to underserved women, in- The CIS is the source for the latest, most accurate cancer
cludingolderwomen,womenwithlowincomes, andwomen information forpatients, their families, the general public,
ofracialandethnicminoritygroups. Thisisdonethroughthe andhealthprofessionals. Consumermaterials,inbothSpan-
NationalBreastandCervicalCancerEarlyDetectionProgram ish and English, are available on the causesofcancer, can-
(NBCCEDP), using partnerships with State health agencies cerprevention, the immune system, and research progress
and other national organizations. NBCCEDPbuilt the infra- on various types ofcancer. Patient education materials are
structure forearly detection of breast and cervical cancerby availableonthemanydifferenttypesofcancer,cancertreat-
supporting public and provider education, quality assurance, ment and cancer diagnosis. The CIS also responds to calls
surveillance, and evaluationofactivitiescritical to achieving in English and Spanish.
maximumutilizationofthescreening,diagnostic,andcaseman-
agementservices.Fundedcomprehensiveearlydetectionpro- • CancerNet™ Website
gramsprovide: breast andcervical cancerscreeningservices http://cancernet.nci.nih.gov
towomenwhoarelowincomeand/orracial/ethnicminorities; The National Cancer Institute (NCI) also maintains the
appropriate referrals and diagnostic follow-up, case manage- CancerNet™ Web site, afree gateway to reliable informa-
ment and assurances for medical treatment; public informa- tion about cancer for patients, health professionals, and
tion and education programs to increase the use ofscreening peopleatriskforcancer.Thesiteoffersprepackagedpages
services; education to health professionals to improve the onspecifictypesofcancerwith informationonprevention,
screening process; mechanisms to monitor the quality ofthe detection, treatment, statistics, coping, and clinical trials.
screening process; and appropriate surveillance and epide- CancerNet™ alsoprovidesNCIfactsheets,clinical trial in-
miologicalsystems. formation, the CancerGeneticsServices Directory ofpro-
fessionals who provide cancer genetics risk assessment,
counseling,andrelatedservices,aswellasanexpandedlist ReachtoRecoveryProgram
oflinks to other, non-NCI cancerWeb sites. ContactyourlocalAmericanCancerSociety(ACS)orcontact
the national ACS for information at 800-227-2345; http://
NationalCoalitionforCancerSurvivorship(NCCS) www.cancer.org
MD
1010 Wayne Avenue, Suite 505, Silver Spring, 20910; TheReachtoRecoveryProgramisavolunteervisitationpro-
301-562-2761; 877-622-7937(tollfree); Fax[phone]; gram.Ithelpsabreastcancerpatientmeettheemotional,physi-
http://www.cansearch.org cal, and cosmetic needs related to her disease and its treat-
NCCS identifies and addresses issues that affect the quality ment.Theprogramisonewomanreachingouttoshareexpe-
oflife for cancer survivors. It offers information, advocacy, riencesandgivesupporttoanotherinatimeofneed.Reachto
conferences, publications, a speakers' bureau, and technical Recoveryalsoprovidesinformationandsupportfortheloved
assistance for individualswhowant to start self-help groups. ones of breast cancer patients.
NationalWomen'sHealthNetwork Sisters Network
514-10thStreet,NW,Suite400,Washington,DC20004;202- 8787 Woodway Drive, Suite 4206, Houston, TX 77063;
347-1140;Fax[phone]; Fax[phone];
http//:www.womenshealthnetwork.org http://www.sistersnetworkinc.org
Foundedin1975,theNationalWomen'sHealthNetworkisan SistersNetworkisanationalAfricanAmericanbreastcancer
independent, member-supported organization dedicated to survivors supportgroup. The organizationwasestablishedin
safeguardingthehealthrightsandinterestsofallwomen. The 1994 by several African American breast cancer survivors.
Network advocates for better women's health policies and The primary services are to provide emotional and psycho-
provideswomenwith accurate, unbiasedinformation andre- logicalsupport,toserveasaresourceformedicalresearch,to
sources to assistthem in makingbetterhealth care decisions. implement community cancer education and awareness pro-
TheNetworkacceptsnomoneyfrompharmaceuticalcompa- grams, to maintain a speakers bureau, and to publish a na-
nies, medical device manufacturers, ortobacco companies. tionalnewsletter.ThenetworkhaschaptersinHouston, Lake
Jackson,andDallas,TX;LosAngeles,CA;LongIsland,NY;
NationalWomen'sHealthInformationCenter(NWHIC) andSeale,AL. Formoreinformation,calltheNationalHead-
8550 Arlington Boulevard, Suite 300, Fairfax, VA, 22031; quarters.
800-994-WOMAN(800-994-9662); Fax[phone]; http://
www.4woman.gov SusanG.KomenBreastCancerFoundation
TheNationalWomen'sHealthInformationCenter(NWHIC) OccidentalTower,5005 LBJFreeway, Suite370, Dallas,TX
is a service ofthe Office on Women's Health, U.S. Depart- 75244; 972-855-1600;Fax[phone];http://www.komen.org
ment of Health and Human Services. The Center provides The Susan G. KomenFoundationwasestablishedin 1982by
information to help advance women's health research, ser- Nancy Brinker to honor the memory ofher sister, who died
vices,andpublicandhealthprofessionaleducation. Provides from breast cancer. The Foundation has become a national
information on breast cancer in minority women, as well as organization with a network ofvolunteers working through-
other health topics and Spanish language materials. out 32 states and the District ofColumbia, fighting to eradi-
cate breast cancer as a life-threatening disease by advancing
NativeAmericanWomen'sHealthEducation research, education, screening, and treatment. The Founda-
ResourceCenter tion distributes two Hispanic breast health videos and fact
NativeAmericanCommunityBoard,P.O.Box572,LakeAndes, sheets on Hispanic Women and Breast Cancer and African
SD57356; 605-487-7072; Fax[phone]. AmericanWomenandBreastCancer.
The Native American Women's Health Education Resource
Centeroffershealtheducationinformationandactivities.The Y-MENationalBreastCancerOrganization
ResourceCenterprovidesafacilityinwhichwomencanorga- 212WestVanBuren,5thFloor,Chicago,IL60607-3908; Chi-
nize around issues ofconcern and social change. Education cagoAreaHotline 24hours: 312-986-8228; NationalHotline
and information on thefollowing subjects areprovided: fetal 9am-5pm weekdays: 800-221-2141; Latina Breast Cancer
alcohol syndrome; family planning; AIDS awareness; sexu- Hotline:[phone];Fax[phone];http://www.y-me.org
ally transmitted diseases; nutrition; child development; do- Foundedin 1978,Y-MEisanon-profitconsumer-orientedor-
mesticviolence;andselfhelp.TheResourceCenterpublishes ganizationthatprovidesinformation,referrals, andemotional
brochures and posters on AIDS and breast cancer. In Octo- support to individuals concerned about or diagnosed with
ber1994,afteralonglegalbattle,theResourceCenteropened breastcancer.Itsnationaltoll-freeHotlineisoperatedbytrained
ashelterforbatteredwomen afewblocks awayfromthe Re- staff and volunteers who have experienced breast cancer.
sourceCenter,aspartofitsDomesticViolenceprogram. The Y-MEpromotesbreastcancerawarenessthrougheducational
shelter is in a modern, spacious, four bedroom home and is workshopsanditsbimonthly,award-winningnewsletter,Y-ME
able toprovidewomen andtheirchildrenwith a safe place to HOTLINE. Awigandprosthesisbankisavailableforthosein
escape domestic violence and sexual assault. need. Atwelve-minutevideodescribingtheY-MEprogramis
alsoavailable.