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COMMUNITY CONSORTIUM CPCRA PRESENTATION'
May 24,'1996 " '
I.
History of the Consortiwn and the Creation of the CPCRA
Donald I. Abrams, :MD, Principal Investigator, Chair, CPCRA IllV
Therapies Subcommittee
II.
CPCRA' Accomplishments
Carol Brosgart, :MD, Community Provider, Co·Chair, CPCRA IllV '
, Complication Subcommittee
'
m. Overview of the Local CPCRA Program
Carroll Child, RN, MS, Project Coordinator, Chair, CPCRA Quality
Improvement Committee
IV.
Recruitment and Retention in the CPCRA '
Becky Perelli, RN, MS, Clinical Research Supervisor, Co-Chair
CPCRA R~search Implementation Committee
V.
The Value of CBCT' s in a Practice
Robert Scott, :MD, Community Provider
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VI. A Patient's Perspective
Thomas Solis, CPCRA Study Partipipant
VII.
Community Input and Perspective
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Orazio Maiorana, CC·Community Advisory Forum Member, CPCRA
Community Constituency Representative
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Claire Rappoport, MA, CC-Community Advisory Forum Member,'
CPCRA Community ConstitUency Representative
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CPCRA: UNIQUE SCIENTIFIC CONTRIBUTIONS
• Answers questions relevant to clinical practice
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• Answers questions important to day-to-day
management of patients with HIV
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Advantages of 'Conducting Research
~in HIV primary Care Settings
• Access to -a large number of patients
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• Enhances long-term fol~ow-up and ascertainment of '
multiple clinical events
• Demogtaphics reflective of the epidemic; increase's
generalizability of results,
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, ,,', • Ability to answer important primary care questions
unlikely to be sponsored by drug companies
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• Ability to answer "strategy" questions, and to promote
coenrollment'in protocols,
C·P·C·R·A
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Frequency Distribution (%) o-f Size of CPCRA Stu-dies
-(28 Studies)
7
7
/
...
c:
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(
CD
(J
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CD
a..
<100
100-299
300-499
.
500-999
1000+
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ActualTTarget Sample Size
C·P·C-R·A
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Frequency Distribution of Duration.of Follow-u'p* .
(15,000 enrollments)·
4,351 .
30
J
....
c
Q)
20
o
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Q)
c..
10
o
3-4 .
2-3
1-2
Years
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Median follow..up
= 22 months·
*as of September 1995; experimental studies or ODS·
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Completeness·.ofFoliow-up
.Major Antiretroviral Studies
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Median' ' " Vital status
:, follow-up (mos.) unknown (%)
, CPCRA ddl/ddC
" , CPCRA NuCombo* '
ACTG 175 '
ACTG,019 (initial report)
, ' 16
30
,33.'
13
' 0.9
3.2 '
" 19.2
6.5
",
ACTG, 019 (follow-up report)
ACTG 019 (CD4+>500)
VA Study
.
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24.5
',58 '
" 34.8',
28
6.2
'Concorae,
40
4.4
EACG 017'
22
, 5.2·
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',* ongoing
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,'CPCRA:'
.Cost.Per Patient
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"'. Budget 1st 5 years: $73,000,000"
" ($15,000,000 each year) ",,"
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• Enrollments*: 15,000
"• Avg.cost per enrollrnent: $5,000 '
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• Median follow-up of e~rollees: 22 month,s,
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", • Cost per patient year of follow-up: '$2,700 '
·*Does not include observational studies except the ODS ... .
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Summary.···
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•. Research in theCPCRA has mat:1y advantages: .
- patient availability
- follow-up
- representativeness; generalizability
- cost efficiency
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-CPCRA has implemented a balanced research
agenda
• CPCRA hasa solid infrastructure/governance
in place· .
.
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• CPCRA has established that large;long~term'
.. trials in AIDS can .
be done·' .
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• CPCRA has been innovative in trial designs and
implementations
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Journol of Acquirtd 1mmunt Deficiency Syndromts ond Human Rttrovirology
12:56-62 " 1996 Lippincott-Raven Pu~lisbers, Phnadelpbia '
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Off-Label Drug Use in Human Immunodeficiency
Virus Disease
*Carol L. Brosgart, tThomas Mitchell, tEdwin Charlebois, t§Rebecca Coleman,
"
tSteven Mehalko, IIJ3:mie Young, and t§Donald I. Abrams
"'East Bay AIDS .Center. Alta Bates Medical Center. Berkeley; fCommunity Consortium. Uni\'usiry of California,
San Francisco AIDS Progra___m at San Francisco General Hospital; tDepartment of Epidemiology alld Biostatistics,
University of California, San Francisco; §University of California. San Francisco AIDS Program, at Siln Francisco
General Hospital; and ~Association of Community Cancer Centers, Columbus. Ohio. U.S.A.
/
Summary: We wished to determine the extent to which drugs used to treat HIV
disease and its cliniCal manifestations are prescribed for conditions other than
those listed on the U.S. Food and Drug Administration's approved drug label.
how such "off-label" use varies by patient characteristics and type of HIV
related medical condition, and the extent to which physicians alter the way
they treat HIV -related conditions because of reimbursement problems associ
ated with off-label drug use. We surveyed 1.530 primary care providers for
people with HIV disease between February and May 1993. A three-pan survey
instrument was used to obtain data on the drugs prescribed for the last three
patients with HIV disease treated by the provider. the preferred choice of
therapy for 32 specific HIV-related conditions, and the extent to which pro
viders faced reimbursement problems regarding the use of drugs for off-label
indications. Three drug compendia were used as cited sources of off-label drug
, uses. In alt 387 (32%) evaluable surveys were returned. yielding ~ata on 1,148
patients. The majority (81%) of patients received at least one drug off-label.
and almost half (40%) of all reponed drug therapy was off-label. Most off-label
drug use was for treatment and prevention of HI V-related opponunistic infec
tions, which frequently repre!iented the ,community standard.of practice (e.g ..
trimethoprimlsulfamethoxazole for prevention of Pneumocystis carinii pneu
monia), or the de facto standard of practice when no licensed therapies were
available (e.g .. drugs for treatment of Mycobacterium (1\'illnl complex. MAC).
More than 75% of off-label usage was cited in at least one of the three author
itative medical compendia. The use of drugs for off-label indications in HIV .
care is common and frequently represents community standards of care. Re
liance on drug compendia for support o( off·label drug use accounts for the
majority of such uses, although many legitimate off-label uses may not be
included because of compendia publication lag. The prevalence of off· label
drug use in routine clinical practiCe and the development of newer and more
costly drugs for treatment of HIV and its medical complications argues for the
articulation of an 'explicit national reimbursement policy for off-label uses of
prescription drugs so that medically appropriate therapies will be available to
those with insurance in a rational, consistent way. Key Words: Off-label
drugs-HIV disease-Insurance reimbursement-Drug compendiaCommunity standard of practice.
.
Address corresponaence and reprint requests to Dr. Carol
Brosgart at Community Consortium. 3180 18th St.. Suile 201,
San Francisco. CA 94110: U.S.A.
Manuscript received June 23, 199.5; accepted January 31. 1996.
.56
W~en it new drug is licensed by the U.S. Food
and Drug Administration (FDA), the indications for
its use are included in the FDA-approved label and
are limited to the medical conditions for which a
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OFF~LABEL DRUG USErN HIV DISEASE'
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manufacturer has provided sufficient clinical 'sup
; port as to the drug's safety and effectiveness (1).
I However, evidence is often available in the medical
literature and authoritative drug compendia on the
efficacy of a drug for other conditions, and drugs
: are frequently prescribed by physicians for such
'i "off-label" uses. Although the FDA has stated that
: off-label drug use is appropriate and rational,in cer
:' tain circumstances (2), many insurers and state pro
:, grams (such as Medicaid) routineiy refuse to reim
! burse for drugs prescribed for off"label indications
; (3-5).
!
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r
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, Due to' the proliferation of anecdotal reports of
•• reimbursement denials for off-label use in oncology,
~,Congress requested the U .S~ General Accounting
,Office (GAO) to assess th'e situation. In Spring
. 1990. the GAO conducted a national survey of on
"cologiststo inform Congress about the prevalence
: of off-label use, the extent of rCimbursement deni
als. and the effect of denials on the treatment of
::cancer patients (6). The GAO study showed that
: off-label use of cancer therapies was common and
widespread; more tha,n one third of anticancer
:'drugs were prescribed for off-label uses, and more.
ithan half (56%) of cancer patients were prescribed
:'at least one drug off-label (6). Most oncologists re
:ported frustration with shifting reimbursement pol
iic;:ies, and some oncologists claimed that these pol
,icies caused them to alter preferred treatments and
;site of care (6).
,
" Anecdotal reports from primary care providers
,who treat people with human immunodeficiency vi
'~us (HIY) disease suggested that the extent of off
label use of prescription drugs for treatment of
, HIY-related medical conditions was similar to off
label drug use in oncology. To assess the extent to
which drugs used to treat HIY disease and its clin
ical manifestations are prescribed for off-label indi
. , ~ations and how off-label use varies by patient char
acteristics and type of HIV -related medical condi-.
tion, we conducted a national study of off-label drug
use in HIY care, mod~led closely on the GAO sur
vey of oncologists:
'
METHODS
,;; We targeted pri!Tlary care providers for people with HIV dis
ease. This group includes internists. family practitioners.
mid!evel practitioners (nurse practitiolJers and ,physician assis
tants). and infectious disease specialists.'To i!Jcrease generaliz
, ability. the sample of HIV health care providers was drawn in
p~oportion to reported AIDS cases by state. Most providers sur
veyed were affiliated with one of the HIV/AIDS community
",57 '
· based clinical trials networks funded by the Terry Beim Com
munity Programs for Clinical Research on AIDS (CPCRAI of the .
National Institute of Allergy and Infectious Diseases (XIAID).
or the Community-based Clinical Trials Network (CBCT:-l) .
funded by the American Foundation (or AIDS Research
(AmFAR). and was supplemented by mailing lists from national
HlV-related medical publications. slate medical societies. and ..
state health department registries.
We adapted the survey instrument developed for the G:\O
study for. use in the setting of HIV disease. The first part of the
survey instrument solicited responses to questions about the last
three patients for whom the provider prescribed HIV-related
therapies. Fqr each patient. the provider was asked to give back:
ground information about the patient (e:g.; sex. age. insurance
coverage), the disease characteristics (e.g., severity of illness.
most recent absolute CD4 count). the drugs prescribed or con
· tinued for the patient at that visit. and the indications for each
prescription from a list of 58 HIV -related c~nditions_ The second
part of the questionnaire asked the providers to respond to ques-'
tions about the drugs they usually prescribed for treatment or
prevention of specific HIY·related medical conditions [e.g .•
Pnl'ullloc),slis carilli; pneumonia (PCP), Mycobacll'rilll1l GI'illm
· complex (MAC). HIV-related medical conditions were .sdected
· to include those for which there are standard treatment regimens
(e.g.. treatment of acute PCP) and conditions for which there is
'no agreement on a standard medical approach (e.g.• wasting syn
drome). Providers were asked to identif... the drue or drul!s that
were prescnbed in their Ii~t and second-lines of t~eatmen~, Pro
viders ~vere also a*ed to il)dicate if the drugs they usuallr pre
scribed for these conditions differed from the drugs they would
like to use and the reasons' for any differences~ The third part of
the questionnaire solid ted responses to questions regarding the
extent to which respondents encountered reimbursement prob
lems, Jor prescriptions with thir4-party payers.
. The FDA-approved (labeled) indications for each drug \\ere
· determined from the package insert information. Three drug
'compendia (AHFS Drug Information published by the American
Society of Hospital Pharmacists. Drug Evaluations published by
the American Medical Association. and USP Dl published by the
.United StatesPharmacopeialCon\'ention) were consulted to de
termine if the indications noted. by respondents for the· pre
scribed drugs were cited. These three compendia were selected
· because inclusion in any of these compendia has been cited in
recent legislation in several states as a criterion for the reim
bursement of drugs used for off-label indications (7).
-We received 690 responses. or 45~ of questionnaires sent out
to the survey sample: 387 of the 690 returned questionnaires
were determined to be evaluable. Most ineligible questionnaires
were from respondents who ~id not provide primary care or who
reported treating fewer than' .three· HIY -infected patients (the
minimum requirement to ~~ considered an HIV primary care
, . provider for purposes of the' survey) or had nondeliver-ble ad·
, dresses. After appropriate apjustment of the sample denomina
tor. the fin~1 response .rate for the survey was 3:!9C.
.
RESULTS .
,
. The results of our study were strikingly similar to
.. the results reported in the GAO study (Fig. I). In
both studies, off-label drug use was common and
widespread; 40% of the nearly 5,000 prescriptions
\'
Journal 0/ Acquired, Immune Dl!jicienq SYIIJromn and Human Rrtrol·irology.
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vOl. 12.1\0. I. 1996
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�C. L. BROSGART ET AL.
58
HIV Disease,
n
Oncology'
=4793
n=>5000
Off·label use
cited in drug
compendia 131 %)
Undetermined
(2'h)
Labeled use
(60%)
Off·label use' ,
not cited in drug
compendia (9%) ,
FIG. 1. Proportion of prescriptions for off·label uses in HIV disease and oncology.
reported in ou~ study were written for off-label in:
other treatment condition groups. Relatively few'
dications, as compared to 35% in the GAO study. '
drugs for treatment of primary HIV infection (1%),
Similarly, off-label usage that was c~ted in 'the drug
symptomatic treatment (11 %), 'and hematologic
compendia accounted for 31 % of the total pre scrip- ,
conditions (14%) were prescribed for an off-label
, indication. A larger proportion of drugs used off
tions reported in our study (slightly more than the
24% reported in the GAO study). and the percent
label was prescribed for treatment' of HIV wasting
age of off-label use for indications that were not
(100%), neurologic conditions (74%). and malig
cited in the drug compendia was 9% in both studies.
nancy treatment (61%).
Unlike in the GAO study, in which slightly more
,Unlike the findings of the GAO study which sug
than half (56%) of the patients received at least one
gested that off-label drug use in oncology was high
drug in their treatment regimen that was prescribed
est when there was no consensus regarding the best
for off-label use, the majority (819f:) of patients re
, therapy, we noted that off-label drug use in HI V
, 'ported in our survey received at least one drug off
disease is frequently the community standard of
"label. ' '
practice for many HIV-related medical conditions.
Like those of the GAO study, our data indicate
Prophylaxis of PCP was typical of the HIV-related
that the extent of off-label drug use varies by stage
condition for whic'h we noted consensus. For PCP
of disease and treatment condition. Of the 1,148
prophylaxis in patients with a CD4 cell count <200/
patients for whom data were reported in our study.
mm), 94% of physician's choice offirst line drug(s)
patients with an AIDS diagnosis received almost
were off-label at·the time of the survey. with 82% of
'preferred regimens, including trimethoprim/sulfa
half (43%) of their drugs for an off-label indication;
symptomatic patients received', approximately, one
methoxazole ,(the labeled indications for tri
third (34%) of their drug's for an off-label indication,
,methoprimlsulfamethoxazole were expanded in'
,and asymptomatic patients received approximately
January 1994 to include prophylaxis for PCP. al
one quarter (26%) oftheir drugs for an off~label in
though this indication was off-label at the time of .
dication (p < 0.0001 Kruskal-Wallis test).
the survey). Of the off-label choices, support for the
To evaluate differences in off-label drug use by " use of these drugs was found in the drug compendia
treatment condition, we categorized the 59, HIV- ' " for 97% of the off-label preferences for PCP pro
related conditions surveyed in the questionnaire
phylaxis. Second-line choices for PCP prophylaxis
into eight treatment condition groups for analysis " favored dapsone (50%), followed by aerosolized
, (Fig. 2). Off-label drug usage varied significantly by
pentamidine (30%). The proportion of second-line
treatment condition group (p < 0.000 I, chi-square).
treatment preferences that were off-label was 68%, '
Among drugs given for treatment of opportunistic
with support found in the compendia for 80% of
second-line, off-label choices.
'
("
infections, 43% were for'off-Iabel indications. A sig
nificantly higher pro'portion of drugs prescribed
The..lreatment of MAC infections, in which pa
(79%) were used for an 'off-label indication for pro
tients typically receive three to five drugs, is an
phylaxis of opportunistic infections as compared
example of a situation in which none of the first or '
with treatment of opportunistic infections and/or
second-lirie treatments reported by respondents
.::::-"""
journal of Acquir~~ Immune' D/!ficit~C)' Syndromes and Human Relrol/ir%gy. Vol. 11. No. I.
1996
. , ...
�OFF-LABEL DR UG USE IN HIV DISEASE·
n ==1577
n" 1106
Opportunistic
Infection
Treatment
Opportunistic
Infection
ProphylaxIs
. n =1084 .
n =584
n=93··
100%"~~~----~------~rr-------rr-------~------~~
,
90%
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I
80%
ctI
10%
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60%
'0)
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,0
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l; ~
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4;
40%
; c.. 30%
20%
10%
Ell
HIV
·T..atment
Off-label Use Noteite<! in Compendia·
. Symptom
Treatment
Hematologic
Condition
Wast.lng
'Syndrome .
I :'·":',·;,1 Off-labeIUseCit~inCompendia
MalignallCy
Treatment
D. U~'ed
Use
. FIG. 2. Off-label drug use by treatm~nt condition and citation in drug compendia
I·
,
were FDA-approved for that condition at the time
· ':treatments are currently approved for HIV-related
of the survey. Of the drugs reported as first-line .
· peripheral neuropathy, and only amitriptyline and
. thoices, four drugs (c1arithromycin, ethambutol,
desipramine were cited in the compendia for this
tlofazimine, and ciprofloxacin) a<:counted for more
use. Capsaicin products, the only treatment cur
than two thirds (67%) of resp·onses·,and support for
re,ntly approved for HI V-related peripheral neurop
their use was found in at least one of the compendia
athy, accounted for 6% of responses .
for all four drugs. Of the second-line treatments ,re
. The extent of reimbursement problerris reported
ported, five drugs (amikacin, ciprofioxacin, azithro
by respondent~ in our survey was also very similar
mycin, clofazimine, and rifampin) accounted for
to the findings of the GAO study. Approximately
two thirds (67%) of responses. Only amikacin and
two thirds :of respondents in both studies reported .
.. ~fampin were not cited in the compendia for treat- .
that they found it difficult to keep up with the pol
ment of MAC.
.
icies of,third-party payers for reimbursement of off
;. The treatment of perjphenil neuropathy is an ex
label drug· use. In addition, approximately half of
~mple of a. situation in which n? clearly effective
the respondents in both studies reported that a .
therapy exists. Consequently, there was less con
· third-party payer had denied reimbursement when a
sensus in the choice of first-line treatment drug .. ., drug was used for an off-label indication. Last,both
Amitriptyline was the most frequen·tly chosen drug,
studies showed that oncologists and providers of
. accounting for 36% of responses. Narcotic usage
HIV -related care frequently changed the setting in
was the second most frequent first-line choice for
which care was provided to avoid restrictive reim
tr¢atmeni of peripheral neuropathy, accounting for
bursement . policies. Sixty-two percent of the re
12%,ofresponses. Nine other 'drugs or treatments
spondents to th~ GAO survey and one third of the .'
accounted for the remaining 52% of responses, in
· respondents to our survey indicated that they had
dhding Vitamin B6 ,Vitamih B 12 , desipramine, fo~
admitted patients to a hospital because a third-party
lates,trazadone, and acupuncture. None of these
payer .would not reimburse outpatient administra- ..
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Journal ofAcquired Immunt DtJkiency Syndromts and Human Rtlrovirology. Vol. 11. No. I. 1996
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C. L. BROSGAR1 E1 AL.
60
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'tion of HIV-relate'd'drugs for off,label uses.,Simi-'tion). Most of the laws (exduding Connecticut,
larly, more than one third (36%) of the respondents
North Carolina', Virginia) also require coverage of
to our survey reported having admitted patients to'"
an off-label use supported by clinical evidence rethe hospital for infusion therapies because a third, ' ported in one or more peer-reviewed medical jourparty payer would not pay for home-infusion drug
nals.
'
administration. Among the providers who had a baHowever, in 14 of 19 states, such legislation has
sis tojudge drug-related reimbursement problems in
been restricted to anticancer drugs. In only five
the prior 12 months, two thirds of respondents in
states (Alabama, California, Maryland. Massachu
our survey reported outpatient drug admJ,nistration
setts, New Jersey) does such legislation specifically,
,as one of the reasons for reimbursement problems.
include AIDSIHIV or apply to all"life~threatening"
illnesses. According to the ACCC, although their
model legislation is broadly written, the legislation
DISCUSSION
that is finally introduced often has been narrowed to
include only anticancer drugs as a result of opposi
tion from insurance companies or attempts by leg
The main findings of our study are that off-label
islators to increase the likelihood of passage by
drug use in HIV disease affected the majority of
streamlining the bill. Part of the argument in favor
. patients whose providers responded to our survey
.and that almost half of the drugs used to treat these
of restricting the sC6pe of these bills was the lack of '
empirical data regarding the amount of off-label us
patients were used for off-label indications. These
age outside the treatment of cancer. Based in part
findings are remarkably similar to the proportions
on data provided by the present study, the Massa
of off-label drug use reported in the GAO study of
chusetts law was recently amende'd to broaden the
oncologists. Because of the striking similarity in
original "cancer only" law to include HIV/AIDS.
findings of these two studies, one might reasonably
Legislation which' would have the same effect' is
conclude that FDA-approved indications for drug
awaiting the governor's signature in Ohio.
use do not include a large' component of medical
, practice and that the'y should not be used as the sole
On the national level. Congress incorporated sim
ilar provisions in the 1993 Omnibus Budget Recon
, or primary criteria on which to base decisions re
ciliation Act (8) that requires Medicare to pay for
garding the reimbursement ofdrugs used in routine
clinical practice.
'
the off-label use of anticancer drugs when they are
used for a "medically accepted indication", but
Recent efforts in the last 5 years on the part of the
does not include drugs used for other conditions.'
Association of Community Cancer Centers (ACCC) ,
The term medically accepted indication closely re
and others to seek legislative remedies to the prob
sembles the requirements found in the state laws in
lem of restricted access by insurers to prescription
that it requires either a citation in one of the three
drugs used for off-label indications has been built on
medical compendia or support of its effectiveness in
the results of the GAO oncology study (6) and the
peer-reviewed medical journals,
,
development of model legislation by the ACCC that
After the passage of the Medicare law, interest at
requires insurers that' provide prescription drug
the state level received a significant boost. Recent
coverage to reimburse for off-label uses C?f FDA
action by the National Association of Insurance
approved drugs under certain conditions. To date,
"Commissioners (NAIC) may spur another round of
19 states (Alabama, Arkansas, California, Connect
icut, Florida, ,Georgia, Illinois, Indiana, Maryland,
bill introductions in the remaining states. After re
ceiving comments from state insurance' regulators
Massachusetts, Michigan, New Jersey, New York,
North Carolina, Ohio, Oklahoma, Rhode Island,
and the general public, including the ACCC and the
American Society of Clinical Oncology (ASCO),
Virginia, Washington) have laws based on this leg
the NAIC adopted model legislation intended to
islation. The core of almost all these laws (exclud
prevent unfair discrimination among insured per:'
ing Michigan) is the requirement to cover the cost of
sons and to prohibit unfair competition among in
a drug prescribed for an off-label use that is sup
surers that include coverage for, drugs as part of
ported by one or more citations in anyone of three
health Q,enefitplans .. The Off-Label Drug Use
authoritative medical :compendia (the American
Hospital Formulary Service-Drug Information, ' , Model Act was recommend~d by the NAIC Exper
imental Treatments Working Group (9). It is very
the American Medical Association Drug Evalua
similar to the ACCC model bill in that it uses the
tions, and the U.S. Pharmacopoeia Drug Informa-
JOl/rnat of A~quired Immllne Deficiency Syndromes and Human Relrovirotogy. Vol. 12. No. I. 1996 , '
�OFF-LABEL DRUG USE IN HIV DISEASE
61
sary expenditures f~r i~patient administration of
three compendia and the peer-reviewed medical lit
drugs that could be administered at far less expense.
, erature in making c,overage determinations. It does
in an outpatient se'tting. Reliance on,drug compen, , not limit applicability to drugs used in the treatinent
'of cancer. In addition, the same working group is
dia for support ,of off-label drug use is likely to' ac
also beg'inni~g work on model legislation regarding
, count for most such uses, although many legitimate
off-label uses may not be included in a timely fash- '
;! insurance coverage for experimental treatments,
io~. Due to publication lag and the constantly
~:also being termed "new health services." Support
"moving target" that characterizes the treatment of
;: by the NAIC is significant in that it represen'ts state
HIV disease and its medical, complications, -10%
legislation that is recommended by the, nation's
of off-label use of prescription drugs wiII not be
state insurance commissioners.
"
~ddressed by such compendia. The prevalence of
, ' The success of these efforts to recognize the need '
; for access, to off-label uses of FDA-approved drugs,
off-label drug use in routine clinical practice and the,
has hinged on data that shows, off~label use, to be
development
newer and more costly drugs for
treatment of cancer and HIV-reJated medical com
~widespread in the treatment of cancer. The addition
plicationsargues for development of uniform fed
"ofdata detailing the importance of off-label drug use
, eral and state legislation that addresses the reim
'; in the treatment of HIV .disease will add to the pub
! lic policy debate on' the need for .assured access to . ' , bur-sement of prescription drugs for off-Iabd uses so
,:these treatments. The Congress, state legislators.
that medically appropriate therapies wjU be avail
,and state' regulatprs have reSponded favorably
'able to those with:insurance in a rational. consistent,"
way.
,;: when presented with the fact that insurance premi
,)lmS did not increase in states that have adopted
_off-label drug legislation and that access to medi
, Acknowledgment: This work was supported by Grant
: cally appropriate treatments for those ,with insur
" No. 1I1042-13-PP from the Public Policy Research Pro
i ance is the reasoQ people have insurance. Experi
gram of the American Foundation for AIDS Research.
We acknowledge Nicole Mandel for assistance in project
I,ence has shown that denials of reimbursement for
coordination and 'producing the survey instrument;
:off-label drug use frequently does not result in sig
George Silberman, M.A .• of the U.S. General Accounting
•nificant cost savings but may exact an immeasur
Office for permission to 'adapt the GAO oncology survey
,'able cost on those with life-threatening illnesses and
instrument for use in this study; Trisha Barrett, B.S.N.,
R.N., C.I.C.,'Krista,Bramble, PharmD, Carroll Child.
, :their families., When faced with such .insurance
i'company practices, many patients wiil be treated , , R.N., M.S.• and Constance Wofsy. M.D., for critical re
view of the manuscnpt and helpful comments; Drs.
,with less effective therapies that will be covered or
, Stephen Follansbee, Shelley Gordon, Kenneth Mills. and
:'they may be treated iri an inpatient setting to gain
Dennis Osmond, for reviewofthe survey results: and the
laccess to their physician's,preferred treatment.
principal investigators and clinicians of the Community
I
I
of
I
"
"
,CONCLUSIONS
:~
,
•
I
Both the GAO SUl:Vey Of oncologists and our surIvey of providers ofHIV~rel~ted care demonstrate
that off-label drug Use is common and widespread.
Whereas off-label drug use in oncology was highest "
'when, there was no consensus on the best therapy,
~efound that off-label drug use in HIV disease'fre
, quently reflects the community standard of care for
many HIV ~related medical conditions. Reported
denials of reimbursement for off-label usage of
drugs to treat cancer, and HIV-related medical con
ditions are also:common, sometimes causing physi
Cians to aIter.tht;!ir preferred trea~ments or to change
the setting in which' care is provided. ,Thus, such
reimbursement practices may result in less than pp- '
limal therapies for 'patients or costly and unneces
Programs for Clinical Research on AIDS of the National
Institute of Allergy and Infectious Diseases, and the
Community~based Clinical Trials Network of the Ameri- '
can Foundation for AIDS Research; and AIDS Clinical
Care, the New Jersey Association of Medicine and the
New York State Department of Health AIDS Institute for
providing mailing lists of primary care providers. Dr. '
Steven Mehalko. one of the authors of this article. died
Janmiry 24~ 1995. '
'
REFERENCES
,I. Nightingale SL. The FDA's role in appropriate drug use. In:
Morgan JP, Kagan DV, eds. Society and med,kation:ron
, flirting signals for prescribers and patients. Lexington. ~IA:
Lexington Books, 1983. '
,
, 2. Use of approved drugs for unlabeled indications. FDA Drug
Buff 1982; 12:4-~:
3. Bailes JS. Payment and coverage issues affecting medical
oncology, Breast-Cancer Res Treat 1993,25:119-26:,
'
4. Rayburn WF. A physician's prerogative to prescribe drugs,
II
it
"
JOllrnal of Acquired Immune Deficiency Syndromes and Human Relrovirology. Vol. 11, No. I. /996 ,
�'.
~.
,',~' ': .. ; . ' .
62
.
. C. L. BROSGART ET.AL.' ':
,
.'}
,
'.
'
",,:
~,
:
for ofHabel uses during pregnancy. Obs/et Gyneco11993;81: .
]052-5.
. ,
5. LaetzT,·Silbennan G. Reimbursement policies constrain the
. practice of oncology. lAMA 1991;266:2996-9.
..
6. US General Accounting Office. Off-label drugs: reimburse
ment policies constrain physicians in their choice of cancer
therapies. Washington, DC: US General Accounting Office;
Publication no. PEMD 91-14, 1991.
,
'.
;.\
,',
, "
.' ..
,,'
'.~
ro,
. 7. Buchan~
Smith SR. Medicaid policies for HIV-related
prescription drugs. Health Care Financing Rev 1994;15:43
61., . .... '. . . . .
. ..'
\,..'
8. 1993 Omruous Budget Reconciliation Act, Section 1861 (s)(2)
of the Social Security Act (42 U.S.C. 1395 (s)(2», as
amended.'
.
.
9. National Association of Insurance Commissioners. Off
.Label Drug Use Model Act, 1995.
'.,
i!
I
I
\
.
Journal 01 Acquir~d Immune D~ficienry Syndromes and Human Relr~"i,ology.
voI.n. N.o. 1.1996
�r",
THE WHITE HOUSE
WASHINGTON
May 17, 1996
MEMORANDlJMFOR CAROL
H~ 'RASCO AND PATRICIA S. FLEMING
FROM:
.' RICHARD SORIAN
Subject:
. Visit to Raflki House/CorPoration' for Supportive Housing
I.
LOGISTICS.
DATE:
TIME:
LOCATION:
CONTACT:
U.
Friday, May 24
'10:30-11':30 am PST
1042 Divisadero Street
Larry S~on, 4151$46':3464
PURPOSE'
.Carol and Patsy are visitingRafiki House, an: award-winning, HUD-funded
transitional housing program for African Americans with HIV1AIDS who are
. recovering from.drug/alcohol dependency and who are homeless. The
program provides 24-bour s:upport to 8 residents, food, income, medical care,
trarisportation, clothIng; money management, substance abuse counseling, and
emotional support.'
.
. .
You will be greeted by Larry Swon, Interim Executive Director, who will
conduct.a hrieftour prior to a meeting with residents.'
.'
..
.
.
PARTICIPANTS1AUDIENCE
You will be joined by Roberta Achtenberg, Senior Advisor to -Secretary
CDC, along with
Cisneros, Joe O'Neill of HRSA, and Helene Gayle
members of the Advisory Council.'
.
III.
of.
, FORMAT'
10:30 '
Arrive Raflki House, Greeted by Larry Saxxon; Begin Tout,
'Complete, Tour, ,Begin Meeting with Residents
'
10:45
11:25
Complete M~ting. with, Residents.
11:30
'Depart Raflki Hou~e
. .
.
IV.
"'
'v.
e·'
,MEDIA
. . Closed Press~
..
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"
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,
�1 7 - 19s:.b 5: 28Pt·j
FROI·' 51025 I 595.:1
SAN FRANCISCO/BAY AREA AIDS PROJECTS
1.
RAFIKI HOUSE
Contact Person:
Larry Saxxon
Interim Executive Director
Black Coalition on AIDS
1042 Divisadero Street
San Francisco, CA 94115
415.346.3464
Project Location:
1638-1640 ~irkwood
San Francisco. CA
Development Funding Sources:
SFRA-HOPWA
CSH
Operating/Service Funding Sources:
Ryan White C.A.RE.
HOPWA
San Francisco Foundation
Donations
Rents
Project Description .
. Rafiki House is an award winning-(including HUD/Special Project of National
Significance (SPINS) designation)- transitional housing program.model. It is currently
located in the Bayview District of San Francisco. The Black Coalition on AIDS win
soon purchase. rehabilitate, and relocate toa larger project site at 1761 Turk Street. in
the Western Addition of San Francisco, to expand its Rafiki House program from 8 to
11 persons. Rafiki House, which' has operated successfully since opening in 1986,
provides culturally competent HIV/AIDS education, advQcacy,and direct services. The
services provided through Rafiki House are targeted to help single African Americans
with HIVIAIDS who are recovering from drug/alcohol abuse and who are homeless.
The program provides support to residents 24-hours a day, with case management
services which focus on meeting basiC needs; permanent· housing, food, income,
appropriate medical care. transportation. clothing. money management. substanse
abuse counseling and emotional support. eCA will own and self manage the expanded
site and provide supportilJe services to the residents. .
..
.
.
The Turk Street site. which was built in 1990. has two large flats With 4 bedrooms. 2
baths each. and a large 3 bedroom. 2 bath top floor flat with a large sunny deck. Rafiki
House renovation work. primarily includes adapting the site for disable access.
Construction. which is scheduled to com~ence in mid to late April. 1996, will include
installation of a three-stop elevator and a fully accessible bathroom.
�,.
:;-1 5~ 1996·· 1 : 20Pf\1
P
FROM 5102515954
?
It' '
• ,t "
CORPORATION FOR SUPPORTIVE HOUSING
1540 SAN PABLO AVENUE, SUITE 600, OAKLAND, CA94612
.
.
HEALTH~ HOUSING AND· INTEGRATED SERVICES 'NElWORK·
.
.MANAGED CAREOEMON$TRAnON PROJECT
,.
The·Corporation for Supportive Housing (CSH) wiUfacilitate the establishment of an·ew,
non-profit, integrated .services system which will provide health care, mental health, and
su.bstance abuse treatment services in conjunction with $ervice-enriched housing .for
approximately 750 single adults in San FranciScO and Alameda County who are homeless·
or "at risk" and have HIV/AIDS, chronic: mental illness, and/or substance abuse disorders.
By developing a formal network of affiliated providers offering health and integrated'
services linked to housing, the projed will provide comprehensive primary and preventive ,
health care, mental health and· substance abuse treatment,· and non-ctinical soCial,
vocational, and community-building 'services that Will allow homeless or Itat·risk" persons
with disabilities to achieve more stable, independent Jiving with better health status, and
. to reduce their ·utilizatiort of costly emergency and inpatieritmedical and psyChiatric
services, jails, and prisons. :Service utilization, cost. and outcome data will be used to
establish capitation rates and risk.sharing agreements .for ongOing managed' care
financing.
.
." . . .
.
The tirg8tpopuJatJon for this . project wit; be single, non~elderlyadults with
.. disabilities induding serious meritSl illness,.· HIV I AIDS. and/or substance abuse
disorders, who are ho~eless or at risk of homelessness. The'project,will target persons
who are high users of hospital emergency rooms, psychiatric . emergency and inpatient
services, or medical I psyChiatric services in jails or prison. Participants win have. a very
high rate of dual or trtpJe··diagnosisand will need multiple support systems. Without
integrated -services linked to supportive housing, these Individuals often use very high
!evels of acute and emergency health care services (including hospital emergency rooms
and -inpatient psychiatric treatment) and have· very limit~d access to' aftercare Or
continuous primary care and preventive services.
. ,.
.. ' Demon&tration Approach. Integrated services teams will provide an array of health
and non-clinical services in 8 to 10 supportive. housing sites in San . Francisco. and
'- Alameda County, starting in late 1995. ,The integrated services teams will be staffed by
a network· Of partiCipating providers.· induding a mobile clinical t~am providing primary
health care and health education. as weJlas on*site,· dient-centered mental health· and
substance abuse treatmenf services, support for community-building and peer support . '
systems, assistante with independent living skills,' and· linkages with non-ctinical
community .resourCes including vocational services. . Fonnal relationships will be
"
...
,
.
�•
5-15-1996 1 :21PM
P.3
FROM 51 02S 15954
e
, . established with other providers for services beyond the scope of the integrated services
teams. including crisis and residential treatment, and hospitals, in order to faCilitate
appropriate access to the array of services needed by program participants, while
establishing "gatekeeping" strategies to control utilization of high-cost services. ServiCes'
teams will include peer staffing - persons who are formerly homeless andlor consumers
of services. These teams will be financed by a combination of Medicaid revenues and
, other publiC and private. sources.
.
,
'
Most housing sites will be Single Room Occupancy (SRO) or studio apartment
residences operated by non-profit housing developers who have acquired and
rehabilitated this critically-needed affordable housing, with a commitment to serving
homeless persons with special needs. There will also be at least one te'am established
to provide integrated services tc? participants living in a cluster of smaller housing sites.
e,
.CSH Role. The Corporation for Supportive Housing (CSH)will provide pOlicy and
planning leadership to establfsha new non-profit managed care entity, coordinate data
collection and the implementation of a uniform MIS system for the program, and
implement strategies to maximize Medicaid and other financing resources for patient care.
CSH will raise the necessary private funds to complement available public support. and
win work with government to dedicate public funds to the project. CSH will faCilitate the
. establishment of an Oversight Committee which will indude housing and service
providers, consumers,and representatives ,of state and IOca! government.' CSH will work
with a research partner to analyze service utilization and cost data and projed outcomes.
The new non-profit managed care entity will be established by the second year Of
the project. and will be a public-private partnership.
new entity will assume
increasing responsibility for integrating grant funds with health care financing 'from state
and local government. With CSH arid research partner support, data collected regarding
~ project participants' service utilization wilt b~ used to negotiate risk-adjusted capitated
funding for health care and mental health services provided to program participants. The
new entity will be responsible for risk management, utUization review, quality assurance,
fiscal management, and MIS.
The
Current status. Primary care services will be provided in each county by the Public
Health Department through the Health 'Care for the Homeless Program, which is entitled
to cost-based Medicaid reimbursement as a Federally Qualified Health Center (FQHC).
Housing Sites that will participate in the project have been identified in San Francisco and
Oakland.
Partnership agreements or ,contracts are being established with those
providers who will offer mental health, substance abuse, and related services in affiliation
with the FQHC fOr the first four teams that will be established during the project's first
year. Staff recruitment and selection, training and team building activities; and other start
up tasks are underway. Four on-site dinics and 'integrated services teams,' serving more
than 350 fOnner1y homeless supportive housing tenants at five· buildings in both San
Frandsco and Alameda County will be operational by the start of 1996. Pfanning is
underway for additional service teams at supportive housing sites that will be ready for
occupancy during the project's second year.
'
, .
�~~15-1996
1 :22PM
FROM 51132515954.
CSH has been engaged in an effort to raise the necessary public and private funds
to support the Health. Housing and Integrated Services Network. The Robert Wood
Johnson Foundation has provided a three-year grant to support the projed through the
Building Health Systems for People with Chronic Illnesses program. The U.S.
Department of Housing and Urban Development (HUD) has provided a grant to support
the project in San Francisco. Additional funding has also been committed by the Blue
Cross of Califomia through its Califomia HeaJthCare Partnerships Program. Project sites
will also receive funding for vocational services through CSH's Employment Initiative,
funded by the Rockefeller Foundation. CSH has worked with. county governments to
inctude the project in budgets for the 1995·96Jiscal year, and has received commitments·
. based. upon anticipated FQHC Medicaid revenues.
QdQber 19&5
rdemo.•,,",
P.4.
�ElAINE LOPES
PlloGAAM DlIlfCTOR
TIlE RAFlKI HOUSIHG PROGRAM
415.641-5641 • FAX 415.641.0483
A PROJECT OF THE SAN FlwicJsco
&ACK CoAuTlON ON AIDS
o
CLINTON L\BRARY PHOTOCOPY
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Rafiki, in Swahili means "Friend."
It also implies a spirit of living
in community a sense of
being bonded to one another.
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As the African American commu
nity moves into its second decade in
the struggle against AIDS and as
African Americans continue to be
disproportionately affected by HIV,
Rafiki has come to mean a concrete
commitment to help a sister or brother
in need.
The Ra!iki Services Project provides
support volunteers for African Ameri
can people with AIDS and HIV-related
illnesses. We will endeavor to match
your needs with the appropriate
volunteer.
FOR MORE INFORMATION CALL
THE RAFIKI SERVICES PROJEa:
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Rafiki is based on the principle that we
care and must help each other in the
struggle against the AIDS virus. We
must begin to say to ourselves that no
one is expendable.
1&1 1&1 •
•
•
All services will be provided confidentially.
Rafiki is about togetherness.
THE RAFIKI SERVICES PROJEa
1042 DIVIS
ADERO STREET
SAN FRANCISCO, CA 9411 S
This program is sponsored by the San Francisco
Black Coalition on AIDS and the California AIDS
Intervention Training Center and funded by the San
Francisco Department of Public Health.
PROUDLY PROVIDING SERVICES FOR
THE AFRICAN AMERICAN COMMUNITY
�The Rafiki Services Project
proudly provides the
following services for
all those affected·
by the AIDS crisis in
the African American com
munity:
•
•
•
•
•
Community education about
AIDS and HIV.
Co
N
You and your .organization can become
a vital part of the support network for
someone who needs a helping
hand.
CD
(I)
Sponsor Dr co-sponsor a Ralik; Volunteer
Support Training.
Practical Support Volunteers provide ser
vices such as assisting with the preparation
of food, shopping for groceries, arranging for
transportation and other household chores.
Culturally-sensitive training
for emotional and practical
support volunteers for
PWAs.
Emotional Support Volunteers ensure that a
Direct placement of volun
teers with people with AIDS.
-
-
«I
Become a practical Dr emotional support
volunteer for someone living with AIDS.
Recruitment and screening
of volunteers for people
living with AIDS (PWAs).
Ongoing support groups for
emotional and practical
support volunteers and
caregivers for people with
AIDS.
"V
person living with AIDS has someone to
share concerns, fears, joys and other feelings
about living with illness. Being an emotional
support volunteer means taking time to listen
and responding appropriately to the needs of
another human being.
Sponsor a Raliki Services staff-person to speak to
your group about AIDS in tire African American
community and tire need for volunteers.
Rafiki Service Staff are trained professionals
who can speak sensitively and sensibly about
the facts regarding AIDS and the opportuni
ties for more involvement on the grassroots
level from the African American community.
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The Rafiki Services staff can arrange a
weekend training for groups of twenty
or more, or your organization may
wish to become a part of a previously
scheduled training.
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�Who WeAre'
The Black Coalition on
AIDS (BCA), fonned
in 1986, is a multi-ser
vice community based
organization with a dual mission of: 1)
stopping the spread of HIV disease in
the African American community
through education, advocacy and em
powennent; 2) taking care of our own, '
ensuring quality care and community
support for Mrican Americans who
have tested positive for the AIDS
virus.
Our'Goals
'" to advocate for HIVIAIDS preven
tion, edllcation, and health service
needs of African Americans to appro
priate governmental and non-govern
AIDS Facts
AIDS, or Acquired Immune Defi
ciency Syndrome, is a disease caused
by the HumanImmunodeficiency Vi
rus (HIV). AIDS is the severest form
of HIV disease. It is a fatal disease for
which there is no known cure.
The AIDS virus is not transmitted
through casual contact. It is passed
from one person to another through the
exchange of blood products or during
sexual contact with the exchange of a
man's semen (cum) or a women's vagi
nal secretions. Unprotected sexual con
tact, including anal and vaginal sex,
and sharing of dirty needles can put
anyone at" risk to becoming infected
with the AIDS virus.
.
_me.Iltctl,agc~;fic:ies; ~
'" to act as a resource for the develop
ment of new strategies for combating
HIVIAIDS among Afriean Americans;
'" to promote networking and collabo
rationamongmvI AIDS agencies serv
ing Mrican Americans;
'" to promote HIVI AIDS awareness
and prevention among Mrican Ameri
cans.
'" ' to provide culturally appropriate
services to African Americans with
mv.
AIDS virus does not discriminate .
People from any race, gender, age,
sexual orientation or socio-eConomic
status can become infected with the
virus. African Americans in California
contract AIDS at three times the rate of
anyotherracialgroup. African Ameri
. cans are 12% ofthe U.S. population,
yet 30% of the over 300,000 cases of
AIDS diagnosed in the
United States since 1981
have been Mrican Ameri
can men, women and chil
dren.
In 1993, 13%, of the people
diagnosed with AIDS in
San Francisco were Afri
can Americans.
The AIDS epidemic is spreading rap
idly in the African American
community. While it is true there is no
cureforHIV/AIDS,forthose who are
already infected with the AIDS virus,
there is life after my. Early medical
treatment is helping many people with
HIV live longer. It is important to
Jearn about AIDS, drug abuse and
safer sex.
B CAP r 0 g ram S
AIDS Prevention Project
TheBCA operates an Information and
Referral Helpline on- weekdays; The
Helpline provides confidential and
anonymous HIV prevention informa
tion and referral for testing, treatment
and support services. For information
or referral, call the BCA at 346-AIDS.
The BCA also sponsors HIVIAIDS
workshops, seminars, conferences and
a Speakers Bureau which provides
knowledgeable people to make pre
sentations at schools, churches and
community gatherings.
BCA staff also works with the media
to insure that accurate and timely in
formation reaches African Americans
and the general public.
Public Policy Advocacy
BCA staff acts as an advocate for the
needs of African Americans to gov
ernmental agencies, elected officials
AIDS service providers, private fund
ing sources and the media. BCA is
engaged in public advocacy at the lo
cal, state, and national levels for pre
vention reforms.
Rafiki Services Project
Rafiki is a Swahili word meaning
friend. The Rafiki Services Project
trains volunteers to provide emotional
and practical support for African
Americans infected with the AIDS
virus. Rafiki offers ongoing support
, groups for volu~teers and .p~acement
of volunteers wIth people IIvmg' with
.HIV..:.For~ore in~ormation about
. Raflkl ServIces ProJect, call (415)
346-5860.
. Rafi/d House/Holly Park
A community-based eight-bed mvI
AIDS transitional housing facility,
RafIki House is the first mvIAIDS
housing in San Francisco's Mrican
American community operated by an
Mriean American agency. Holly Park
is our first permanent housing facility
which includes a one bedroom apart
. ment for a family. For more informa
tion about the program at RafIki House,
call (415) 641-5641.
.
,
Every hour an African American man,
,woman or child dies of AIDS. Help us. The
fight against AIDS must involve all of us !
�Nrune __________ ______________________________________
________________________________________________
~
Ad~ess
City,State, Zip_________________________________________
Telephone _______________________________________
o
I want to make the following tax deductible contribution:
0.$25
o
$50
.0 $100
o
$250
o
$500·
o
Other
Please accept this contribution in the name of _______________________
o
I am interesting in becoming a volunteer for the Black Coalition on AIDS.
Please contact me.
o
Please put me on your mailing Ust for the BCA newsletter and other mailings.
Black People Get AIDS, Too!
Call the San Francisco,Black Coa~ition on AIDS HelpLine (415)346·AIDS.
San Francisco Black Coalition on AIDS
1042 Divisadero Street
San Francisco, California 94115
d
�- -- - -
How is Rafiki House supported?
R
afiki residems pay 25% of their momhly
I . income as rem. There is no minimum.
~Rafiki
House will accept residems who
have no income. However, residems must
apply for all eligible public benefits and
emidemems upon admission.
·
R
afiki House is a program of the San
'{ .~ Francisco Black Coalition on AIDS and
_
is funded by the Ryan White C.A.R.E.
Act (Federal funding), the San Francisco
Foundation, and by the donations of
community businesses, churches, organizations
and individuals.
To make a referral or to learn
more about how you can help
Rafiki House:
w
en
~
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(/\ PQOJECf or ThE 0AN fQANCI6CO
BLACK COMmON ON MD0)
�RAFIK
SE
is a transitional,
group honle for
African-Americans
living with HIV disease.
ur goal is ro provide a stable, safe,
comfortable
and
healthful
environmenr to residenrs while helping
them develop a long-term support system for
living with HIV disease.
r
R
~fiki House is designed
serve low
Income men and women (I8 years or
older) living with HIV disease.
Residents must be able to independently
perform the activities of daily living, such as
bathing, cleaning, cooking, walking, etc. As
Rafiki House is a group home, residents must be
able and willing to live cooperatively.
to
AFIKI "OUS
ocated in the Bayview District of San
Francisco, Rafiki House offers up to six
months of temporary housing and
suppOrt services to residenrs in a clean and sober
envlronmenr.
is a place ofservice
and support
ur case managemenr services focus on
meeting basic needs:
,/ permanent housing,
,/ food,
,/
,/
,/
,/
,/
,/
,/
R
OUSE
is a clean and sober
environment
O
aftki House is a large, three-story faciliry
with eight comfortable, furnished
bedrooms.
While private rooms are
sometimes available, residenrs must be willing
ro share a room with one orner person. There
is a common kitchen and dining area, two
communiry rooms, laundry facilities, a rooftop
deck and a garden. Rafiki House residenrs live
cooperatively, rotating chores such as shopping,
cooking, cleaning and gardening.
AFIKI
R
afiki House residents must have at least
have 72 hours clean and sober at
admission, and remain clean and sober
during their residence.
income,
appropriate medical care,
transportation,
clothing,
money management,
substance abuse counseling and
emotional support.
0
n-site programs include weekly house
meetings, support groups, counseling,
social activities, information sessions,
and volunteer services. Rafiki House provides
support to residents 24-hours a day; at least one
staff member is in the house at all times .
Support services from many community
agencies complement those on-site.
,
fiki House is primarily targeted to meet
the needs of African-Americans.
_
owever, all beds not filled by Mrican
Americans are made available ro anyone without
shelter who is living with HIV disease.
lli
�Black People Get AIDS, Too!
~e AIDS virus does not discriminate.
It can
affect you, your friends and your family. AIDS is
not strictly a gay, white male disease. BLACK
PEOPLE GET AIDS, TOO!
• African Americans in California contract AIDS
at three times the rate of any other racial group.
San Francisco's Black community is the hardest
hit.
• African Americans are 12% of the U.S. popula
tion, yet 26% of the over 200,000 cases of AIDS
diagnosed since 1981 have been Black men,
women and children.
• 60% of all women with AIDS are Black. AIDS
is the #1 killer of young women in New York
and New Jersey.
• 50% of the children with AIDS are Black.
• 85% of the injection drug users with AIDS are
Black men and women.
What Can You Do to Decrease Your Risk of Con
tracting the AIDS Virus? Open up and read on.
~etl
both ways
AIDS virus
AIDS, or
drome, is
nodeficien
one perso
blood pro
a man's se
cretions.
r
The viru
(defense a
is then op
not norma
AIDS is
known cur
and more
longer and
The best
TION.
��SAN
FRANCISCO BLACK COALmON ON AIDS
1042 Oivisadero Street San Francisco. CA 94115'Tel:(415)346-2364'Fax(415)346-6037
AFRICAN AMERICANS AND AIDS: THE FACTS
• While African American. conltitute 12% of the U.S. population, 30% of
all AIDS cue. diagnoud since 1981 are Black. men, women and children.
• AIDS ca.e. occur almo.t three time. more frequently among Black. men
than among Wltite men and 14 time. more frequently among Black.
women than White women.
• Black. children contract AIDS 14.3 time. more frequently than White
children.
• African American teen. are 12% of the U.S. teen population but mak.e up
37% of AIDS CUei among teenager•.
• Approximately 52% of all women with AIDS are Black. and 59% of aU the
caul of pediatric AIDS occur among Black. children.
• In the last 10yeaM(1984 thru 1994) in San Francl.co, while the
incidence of AIDS hu decreued among white. by 22%, it hu increued
among African American. by 1 &5%.
• In 1983 in San Francisco African American. were 7% of the AIDS ca.e.
diagno.ed that year, (22 out of 318). In 1988, the percentage had ri.en to
9.1%(1&0 out of 1749). And in 1994 African American were 14.9% of the
AIDS cue. diagno.ed that year (2&1 out of 1751).
• Black. children are 34.2% of the pediatric cues of AIDS diagno.ed in San
Francl.co sinee 1981 (13 out of 38).
• Black. women are 41% of the women in San Francisco who have been
diagno.ed with AIDS since 1981 (249 out of 599).
• There are more hetero.exual African American injection drug U.eM
(IDUS) who have been diagnoud with AIDS in San Franci.co than there
are White IDUS (575 u compared to 473) or 4&%.
• Projedion. by the California Department of Health Service. indicate that
African American. in California are contracting HIV at a rate three
time. that of any other racial grou.p. DHS abo found that AID~ i.
striking Black San Franci.can. four time. more heavily than that of
Black. in other part. of the state.
• In early 1990, the San Franci.co County AIDS releued a study that
concluded that "a .ignificant proportion (30;&%) of the Black commu.nity
i. a t high ri.k. for AIDS."
Primary Source: AIDS reported cue. (From. 7/81 to 33195) S.F. Dept. of
Health AIDS Office.
HIV/ AIDS Surveillance (U.S. Cue, reported through
December 1994), Center, for Di,ea,e Control.
�~
.
SAN FRANCISCO BLACK COALITION ON AIDS
AGENCY DESCRIPTION
"Black People Get AIDS, Too!" This was the simple, yet revealing slogan that the
Black Coalition .on AIDS adopted at its launching in 1986. It was coined to draw to the
attention of San Francisco's Black community and of private and public funders that
African Americans were at high risk for HIV infection and were not receiving the funding
to develop culturally specific program indigenous to the community. At the time, there
was not a single African American agency funded in San Francisco to provide any
HIVIAIDS services.
.
During those early days, the BCA was a truecoalition of individuals and organizations
led by veteran communj.ty leaders and activists. With initial funding from the annual
AIDS Walk and from Levi Strauss Foundation, BCA began a campaign of community
consciousness-raising and education and public policy advocacy.
"Black People Get AIDS, Too!" became the lead catch phrase on billboards, posters,
brochures and a 30-minute educational video produced by and for the BCA. Community
forums on the AIDS crisis in the African American community were organized by BCA
volunteers. BCA representatives became active on county, state and federal advisory
boards and, together with leaders fruin 'other communities of color, formed the People of
. Color HIV.Advisory Committee to make policy recommendations to the county AIDS
Office.
From these seedling beginnings as a loose alliance, the BCA blossomed into a multi
service agency committed to filling some of the gaping holes in the continuum of
HIV/AIDS services to the African American community. In 1989, the BCA was
incorporated. In the five year period from 1989 to 1994, BCA's annual budget
mushroomed from $60,000 to $1.2 million--a 20-fold increase. Concomitantly, the staff
grew from 1. 7 5 positions to 18 full time and 4 part time employees.
The BCA's mission, too, has undergone extensive development. Today, the organization
is dedicated to stopping the spread of HIV disease in the Aflican Amelican community
through education, empowennent and advocacy and to ensuring quality care and
community support for African Americans who have tested positive for the AIDS virus.
To achieve this lofty mission, the BCA staff and board have formulated five goals: 1) to
advocate for the HIV/AIDS prevention education and health services needs of AfIican
AmeIicans to the appropriate public and pri vate agencies; 2) to act as a resource for the
development of new strategies for combating HIVIAIDS among Aflican Americans; 3)
to promote networking and collaboration among HIVIAIDS agencies serving African
Americans; 4) to promote HIV/AIDS awareness and prevention among African
Americans; 5) to provide culturally appropriate services to African Americans with HIV.
Towards these ends, the BCA has developed the following 5 programs:
BCA Housing Program - The program provide transitional (6 months) and permanent
housing to homeless African Americans with HIV. In addition, clients receive case
management and substance abuse counseling services.
In recognition of its pioneering work, the BCA's Housing Program was awarded a 3-year, •
$718,000 Program of National Significance grant in August, 1994 by the U.S.
Department of Housing and Urban Development.
.
Ramo Services Project - RSP staff train volunteers to provide critical emotional and
practical support to African American with HIV. Drawing upon the traditions of
�extended family and volunteerismin the. Black community, the program trains 200
volunteers a year to "take care of their own". The program recruits volunteers in
churches, housing projects and community organizations .
.
3-Street HIV/AIDS Education and Prevention Project - 3-Street provides HIV
prevention education through street outreach and risk reduction workshops aimed at high
risk African Americans. Community health outreach workers outreach to drug users and
their sexual paitners and provid information on safer sex practices and safe injection drug
use. CHOWs also provide condoms, bleach, dental dams and other materials. HIV
educators organize workshops to teach safer sex negotiation, proper condom usage, the
basics on HIV transmission, needle and syringe hygiene and otherrelevant topics.
,
t
,~
~,
.'
Media Outreach Program - The program staff and consultants develop radio and
television public servic~ announcements, billboards and posters, newspaper ads and
flyers. all promoting safer sex and safe needle use among high risk segments of the
African American community. Through the media, the program also attempts to
influence the community's cultural norms and perceptions about individual and
communitywide risk for HIV infection.
Public Policy Advocacy Program - The program seeks to alter public policy to the.
benefit of the health status of the Black community. In particular, program staff have
successfully advocated for a needle ex;hange program in Alameda County. The staff is
also working with HIVprevention planning councils in San Francisco, Alameda County
and at the state level to ensure the plioritization of funding for prevention education of
African. Americans.
The executive director of BCA has 18 years experience in nonprofit management, 6 of
them as head of the BCA. He holds a Bachelor of Business Administration degree frqm
the University of Wisconsin and completed the 12-week AIDS Management Training
Institute conducted by the Support Center. The 5 BCA program managers combined
have 25+ years experience in the AIDS field. BCA managers and line staff are a
dedicated core who are motivated to utilize their program and administrative skills for the
betterment of the African American community. Some are infected with HIV and all
have been affected by the epidemic that has silenced and stilled many of their lovers,
friends and relatives.
Black Coalition on AIDS/Page 2
��SAN FRANCISCO BLACK COALITION ON AIDS
HOUSING PROGRAM
The Black Coalition on AIDS operates an innovative housing program serving
homeless and indigent African Americans with drug problems and mv disease. The
program also provides technical assistance to other agencies in the San Francisco Bay
Area and in other parts of the country in establishing programs which are effective with
.
similar underserved populations .
BCA offers a unique continuum of care in its housing program, ranging from precare to penn anent housing and long-tenn care. RafIki House is the centerpiece of the
BCA's continuum of care. RafIki House is an eight-bed transitional program for men and
women. Clients must have at least 72 hours of sobriety prior to entering the facility. The
pre-care program for people on the waiting list is integrated with the residential program.
Individuals who are sleeping in
she:~
or zmergency housing may spend their days at
RafIki House and receive services. .
Individual assessments are carned out by the substance abuse counselor and the
case manager. The substance abuse counselor provides referrals to outpatient treatment
programs and one-on-one counseling. The case manager works with clients on their
housing, medical, and social service needs, including benefits. It is not uncommon for
residents and clients to have had their benefits revoked for some reason, and so they work
with the case manager to achieve financial. stability.
WeeklyHIV support group meetings help residents get infonnation and support.
This group is closely linked with a variety of community resources, e.g., The Brothers
Network, a program of the National Task Force on AIDS Prevention, for early
intervention in HIV disease, and nutrition for gay and bisexual men of color; Bayview
Hunters Point Foundation for acupuncture care; Tenderloin AIDS Resource Center for
transgender individuals; and the San Francisco AIDS Foundation. At least once a month,
there are guest speakers who bring special presentations on subjects such as stress
management, meditation, and spiritual needs. The group becomes involved with issues of
death and dying when someone in the group gets sick.
Daily living skills are an important part of recovery -- things such as shopping,
cooking, cleaning. There are weekly house meetings at which these and other kinds of·
daily living issues are discussed and at which residents have a voice in how the program
operates.
When a person relapses in the transitional house, i.e., uses drugs or alcohol, the
substance abuse counselor makes a referral. to a detox facility. If the client is willing to
�BCA Housing Program/Page 2
follow a stronger recovery support regimen, he/she is re-admitted into the house to
resume the recovery process. If a client relapses while in BCA permanent housing, the
service coordinator will assist the client to get into detox and then re-enter Raft.ki House
to regain a foundation for recovery while maintaining the permanent housing.
The transition to permanent housing occurs only after residents have a firm hold
· on their recovery, and their support systems are in place for maintaining their sobriety.
After-care is another hallmark of the BCA's housing program. Residents may continue to
participate in the program for three months after they move to permanent housing. For
residents moving outside of San Francisco, relationships are established with resources in
· the area where they are moving so that there is a support network in place when they
arrive.
There are several parts of BCA's housing program that have exemplary qualities:
1) .
BCA has created a model for a continuum of services that are culturally
sensitive to African American drug .... :,.';fS ':,'to are a rising proponion of the HIV/AIDS
.
.
.
population;
2)
BCA has developed Ii model for working with homeless and indigent drug
addicted people with HIV/AIDS that gives particular attention to the transitional points in
their recovery. Knowing that recovery is a difficult and ongoing process, the Rafrki.
House program is able to accommodate people when they relapse as long as they return
to their recovery. This enables them to not jeopardize their six months documented
sobriety for the purpose of gaining entry to HIV -related permanent housing. This is more
flexible that most substance abuse programs and it has proven to be worthwhile when
used judiciously. By allowing clients to continue to participate in the aftercare program
for up to three months, clients are assured of support for this transition.
3)
BCA gathers and focuses resources and sensibilities of African Americans
to provide help and healing for African Americans, cutting across and through other
· categorizations of men and women; gays, bisexuals; and heterosexuals; individuals and
families.
4)
BCA does not attempt to duplicate the various special services in the
community, e.g., benefits advocacy, alternative medical procedures, hospice care. BCA's
sensitivity and identity with the African American culture makes it possible for BCA to
bridge barriers of communication and emotional response. This ensures that clients have
full access to the range of services available, and they and the mainstream service
providers can achieve some level of comfort in their association.
..
�BCA Housing Program/Page 3
5)
BCA is able to leverage an underused and valuable cross section of
volunteers from African American churches, service clubs, and other associations -
people who ordinarily might not corne forward to assist persons with HIV/AIDS.
Not only can BCA share and assist others in replicating this program model, but
BCA can help others learn the "how's" of bringing such a program to fruition. For
example, BCA can share the following:
1)
The importance of the board of directors -- their role, their needs -- and
how to develop and mobiVze the board to enhance the organization and the program;
2)
Staffing and consultant qualifications and configurations that support the
. development and operation of an enriched housing program for this population;
3)
The kinds of technical assistance and financial resources available and
how to work with consultants to create and expand programs;
4)
The partnerships that are useful for funding and creating housing;
5)
The mistakes, false
SLQ..f~,
and other lessons learned -- including a level of
tolerance fur making mistakes - and ::;uggestions for turning them into opportunities to
move forward.
The BCA model -- although oriented toward, African Americans -- can be
adapted to any group that shares an identity and cultural traditions.
�"
•
•
African Americans
mv
infection and AIDS is growing at, an alarming'rate within the African
American population in San Francisco. Between 1981 and May, 1992, the
number of reported cases of AIDS among Airican Americans in San Francisco
jumped from 3 to 1,046, an increase of 349%.9 In addition, there are several
indications that African Americans are seroconverting at a disproportionate
rates; At least 650 gay and bisexual men are still becoming infected with HIV
each year, with every indication that gay and bisexual men of color, especially
African American men, are comprising a larger proportion of this "second
wave" of the epidemic. A 1991 survey of young men attending gay-identified
bars found, for example, that African American men had almost twice the
seroprevalence rate as that of the group as a whole (22.9 percent compared to
12.0 percent). 10 Almost six times as many African American injection drug
users (IDUs) are HIV-positive than white IDUs,II and HIV infection among
African American women and infants is growing ata particularly accelerated
pace.
Medical and public health services are beginning to adapt to the changing
demographics of the disease by developing ways to enhance the cultural
proficiency, of health and human service agencies so that they are more
accessible to, and utilized more frequently by, African Americans and other
people of color infected with the virus or suffering from AIDS.
In addition to current efforts to improve services currently provided by non
people of color agencies, several community..:.based networks and service
organiza tions have emerged to w~r k directly, on ,HIV / AIDS within' the'
African American community. The Black Coalition on AIDS and the
National Task Force on AIDS Prevention have begun to coordinate the efforts
9 "AIDS Monthly Surveillance Repon. Summary of Cases Meeting the CDC
Surveillance Definition in San Francisco Cases Reponed through May 31.
1992...
10 "HIV Seroprevalence Repon." "HIV Seroprevalence for Panicipants of the
Young Men's ,Survey. by Race/Ethnicity. San Francisco. 1991," p.2.
11 "mv Seroprevalence Repon," "HIY Seroprevalence for Injection Drug
Users Entering Methadone Treatment Programs in San Francisco by
,
Race/Ethnicity" ,(1), 19.
•
Pagel1
�•
of local community-based organizations in order to enhance the quality of.
services they provide to their communities.
The Black Coalition on AIDS analyzed the cultural biases and gaps within
existing services, as· well as the potential for greater activity on the part of
African American CBOs.Key issue~ and. recommendations are outlined
below. It was agreed that, at this point in time, it is critical to improve the
effectiveness of non-people-of-color agencies attempting to serve African
Americans and other ethnic communities, and to support, simultaneously,
the capacity of African American CBOs to meet the very critical needs around
HIV / AIDS health care and social Se.Mces in their communities.
Attitudes and Practices Within Non-African American
Institutions Which Impede Access to Care
• Public awareness messages and outreach through the media are seldom
targeted to African Americans, and they are not presented in ways that cut
through pervasive stigmas and stereotypes. Outreach efforts of this kind have
not been effective at promoting the existing health care services which are
available to the African American community.
• A full spectrum of health services is not physically accessible to the African
American community. They·are not located in Black neighborhoods, -there is .
limited public transportation, and there are extremely long waiting periods
required once people arrive at health services, all of which discourage the use
of these services.
• Health organizations (especially medical service providers) generally have
pO'or follow-up so that even those African Americans who do seek services at·
one tfrne or another tend to fall through the cracks.
•
• Because of the strong association of crime with drug use, many health
practitioners and service providers have negative, stereotyped attitudes about
drug/crack. uSers. This bias makes many of them reluctant to extend care to
African Americans who contracted HlV through drug use. They tend to have
Page 12
�" a "whatever they get they deserve" attitude, which decreases the likelihood
I
that drug users with HIV will seo..k appropriate services.
Many mv/ AIDS counseling and health service organizations were
originally set up by and for a gay wl~ite male population. The service model
is geared toward individuals and does not include services for family'
members of the client who are impact:ed by the disease.
•
o
Attitudes and Values Within the African American
Communitv Which Impede Access to Services
.
.
-There is still a myth or misperception held within the African American
" community that HIV/AIDS "is not our issue," and that it doesn't affect
African Americans.
,: - Due to the long history of racism, there is great suspicion and fear among
I African Americans about the non-African American medical system, doctors
'. and other health care providers. There is very little outreach to break 'down
, this mistrust; consequently, many African Ainericans do not start receiving
: direct services until they are in the very acute stages of HIV / AIDS.
•
-There is a widely held belief within the African American community that
,: services run by African Americans are sub-standard. Internalized racism and .
oppression leads African Americans not to believe in themselves. and to
: assume that African American~run programs will be second-rate. This is
:, complicated by the fact that in some cases the services are second-rate due to
; inadequate funding and resources.
"
.
, - There is a great deal of homophobia in community institutions, including
:' churches and. social service agencies. There is a tremendous reluctance to talk
'about sexuality or sex education in general, much less to have open
,discussions about homosexuality and bisexuality in the community. This
silence coexists with and reinforces the reality of extremely high rates of teen
Fage13
•
�:
•
.:
~
pregnancies and sexually-transmitted diseases among African American
youth.
- There is a widespread denial about the diverse sexual practices of Afr.ican
• Americans, including the common practice of men who identify as
heterosexual but have regular sexual contact with men, and the health
implications of this behavior.
-There is a lack of awareness among women about the risk of HIV infection
associated with sexual practices and a lack of empowerment among them to
take action to change sexual practices so as to minimize risk of infection.
•
'
• Women often are the decision makers in African American families, yet
service providers in the community often fail to rely on women's leadership
roles when designing or implementing HIVI AIDS education efforts.
- Taboos against homosexuality and stigmas associated with HIV/AIDS
severely limit the amount and quality of discussions about the disease and its
impact on the, African American population. 'Confidentiality and anonymity
within services is very important to most African Americans due to the
pervasive stigma around HIV I AIDS and general denial about the disease
within the community.
• The Black com:munity is polarized around class divisions. Middle-class
Blacks tend to see IDV I AIDS as a lower-class problem, which only affects
prostitutes and drug users.
•
• Advocacy and direct service efforts' are impeded by an overall fear of
confronting the church in the African American community. Though
, HIV I AIDS is a growing and immediate problem for members of church
communities, it is rarely confronted or discussed openly within the church,
thereby perpetuating the stigma and denial. Church funeral services for
people w:ho have died of HIVI AIDS, for example, typically do not include any
reference to the disease, often at the request of family members.
Page 14
�• Low reading and education levels among African Americans present a
. barrier to education and outreach programs.
•
Gaps in Services
• There is a lack of medical research on HIV/AIDS which
Americans~ There is a glaring absence of people of color
African Americans in particular, in clinical trials, which is
ways in which these individuals could be brought mto a
health services within San Francisco's Continuum of Care.
1
targets African
in general, and
one of the key
whole array of
• One of the most pressing gaps in existing se.""Vices and programs is the lack
of effective outreach targeting African Americans, including a lack of
confidential testing and referral services in mobile units. Community health
:; outreach focuses more on education and prevention, rather than on bringing
African Americans into testing and services.
; • Difficulties in service provision in African American CBOs are exacerbated
, by the staffing shortages and turnover caused by low salaries. It is very
; difficult to retain African American personnel within these agencies, making
. it dose to impossible to develop continuity and consistency in agency
programs. Once a CBO has invested time and funding in training staff, it
'often loses these individuals to non-African American agencies which are
.. able to offer substantially higher salaries for "trained" service providers.
•
i
• Gay and bisexual Black men generally do not have the same access to
infoIlIlation and resources which are assumed in white gay male culture.
;iOutreach efforts have not taken this into account adequately by adapting or
·.gerierating appropriate publicity t~ques .
I,
.
-There is a lack of support for CBOs serving the African American
,population dealing with HIV / AIDS. . This includes. a general lack of
,adriUnistrative support to develop organizational capacity and enhance
communication between different 'African American service and advocacy
,
.organizations.
i,
PagelS
•
�•
• There has not been adequate coordination of prevention and direct services.
Within the African American community, in particular,· it is inappropriate to
draw a solid line of separation between prevention and the continuum of
direct services. As one Black Coalition member commented, "If we had had
adequate funding for education and prevention in the 1980s, we wouldn't
have half the number of African American HIV / AIDS cases we are struggling
to treat now." Education, prevention, and direct services need to be addressed
simultaneously and in a coordinated manner. This includes rectifying the
current lack of comprehensive services addressing homelessness, substance
abuse, and HIV/AIDS for the African American population.
• As in other communities of color, there is a tremendous shortage of
housing, particularly for persons with HIV / AIDS who are women, children,
youth, active substance abusers, or people on methadone. There is not
enough housing available and what is available is inappropriate and
inadequate. The lack of transitional and emergency housing is such a
tremendous problem that African American CBOs frequently are unable to
refer their clie..Tlts to shelters.
• Dueto a lack of training opportunities, there are very few African American
health practitioners working in the City's health and human service agencies.
This means that there are very few practitioners who can meaningfully
advocate within non-African American health institutions for the _health
needs and concerns of African Americans.
• There is a lack of resources for legal and case management services. Legal
.. assistance is critically needed among African Americans to execute medical
power of attorneys, wills, entitlements, and address discrimination issues.
.
•
• The .current system of care within priso.ns is grossly inadequate. There is a
false assumption that inmates are not having sex or doing drugs while in jail,
and there is very little effort to break down the isolation and segregation in
prisons that perpetuates this behaYior and puts inmates at greater risk of H1V
infection. In addition, there are not enough transitional services from inside
the jails to the streets; people are simply released and expected to fend for
Page 16
�themselves with no support services, decreasing the likelihood that they will
, receive any kind of HIV / AIDS direct services.
e
The-lack of support and s~ces ror people in their homes discourages the
use of direct services among African Americans. The importance of the
extended family in the African American community makes home care all
the more critical to effective, culturally-appropriate direct services.
e
Recommendations
Recommendations
fOT
Improving HN seroices
fOT
African Americans:
• Develop training and education ror African American health and social
service providers and· prison personnel around substance abuse and
HIV/AIDS.
• Increase medical research which is culturally-appropriate, including clinical
trials targeting gay men or color and women.
e
• Increase availability of housing ror African Americans with HIV/AIDS,
particularly women with children. Housing should provide for the needs of
the family, rather than focus on the individual person with HIV.
• Provide more culturally specific and appropriate services to ramily
.
members on how to deal with HIV, including training, emotional support,
and home health care.
\
. • Increase housing and case management services ror young people,
particularly those in their teenage years .
.• Increase support for clean needle exchange programs, both as a prevention
method and a bridge to substance abuse treatment.
Page 17
•
I
i
�•
• Increase the quantity and imprpve the quality and impact of outreach
programs in the African American community in order to bring high risk
individuals into testing and infected individuals into treatment and services.
• Provide more culturally appropriate psychosocial services. There is a
particular need for better referral and networking services in this area.
Recommendations fOT De'l'eZoping the. Capacity
•
I,
of African American CBDs:
The Black Coalition. on AIDS stressed the importance of developing the
ability within the African American community to provide _a comprehensive
network of services and communication. It is impossible to address health
services in isolation; rather, what is needed is a network of health, outreach,
media,· and social services which give increased attention to the family and
distinct cultural practices and customs within the African American
population in San Francisco. Experimentation with different models of care
and intervention needs to be encouraged in order to analyze how effective
the medical and mental health models of case management are, how they can
be augmented, and how alternative, more culturally relevant models might
be implemented.
There, is a pressing need for increased support for the development of African
American CBOs so that they can better serve their community and improve
their own networking and communication.
• Improved collaboration among eXisting organizations will enable them to
avoid duplication of services· and improve referral services for African
American clients. Until recently,· there have been no opportunities for
African American sE!rVice providers to communicate and network with each
other. Consequently, there has been fragmentation within the community
and underutilization of services. FUnding is needed for sustained, organized
dialogue among service providers in the community and for the
development and expansion of a collaborativt! ,
health care network in the
.
African American community.
"
,
•
Page 18
�• Funding should be available for general operational expenses of CBOs, not
only for targeted, discrete programs. Funding for operations is'often seen as
unattractive to funders, but is critical to the survival and performance of
smalt community agencies serving the growing African American
population with HlV/ AIDS.
•
• FUnding should be provided to increase the salaries of service providers
working in African American CBOs in order to develop a more stable group
of employees.
, • Funding and support should be provided for a series of African American
community HIV/AIDS forums. These ongoing community events would
provide an opportunity to increase the visibility of HlV education and
prevention, and to help create a' supportive network within the African·
American community for African Americans with HlV.
• Support should be provided for a broad effort to disseminate information to .
the African American community on health issues and HIV/AIDS. In
. addition to community-specific outreach and public forums, there is a need
for more opportunities for small groups to come together in informal settings
to talk and . learn about risks associated with HIV, and the range of
recommended and/or available direct services appropriate at different stages
of the disease.
I
•
• African American CBOs should be supported in their efforts to do outreach
to local churches and social service organizations serving families.
• Funding should be targeted for increased prevention and direct services for
: African American women and their children, including pennatal care,
:. testing, diagnosis, and counseling.
"
;,
• Funding should be available to support more African American
, community health outreach workers and peer advocates to bring at-~k
. persons within the community into testing and services. This would include
" appropriate training of peer advocacy and outreach workers.
Page 19
•
�The Other Half 'OJ AIDS: Women
by Bruce Occefia
�HIV (Human Immunodeficiency Virus) is a relatively new, supermicroscopic retrovirus that has worked
its way around the world in twelve shon years. It has wormed itself into the vocabulary ofevery human
language on eanh.
It must be named because it kills -- it kills people, destroys families, disrupts
communities, restructures societies. And it has only just begun its work....
It is difficult not to impose some sinister, anthropomorphic quality onto HIV. Yet by itself, it is not even
a life fonn. HIV has no consciousness, no motive, no plan. It merely replicates when the opportunity
allows. The main opportunity is found in human sex, one of our basic and natural activities. Sexual
activity is culturally codified in many different ways, but everywhere .shrouded by a decree of privacy,
secrecy and. often shame. Sex, the personal activity most difficult to monitor, much less legislate, has
now become potentially life threatening with the appearance of mv.
The AIDS crisis which confronts us today is not simply about trying to kill a tiny virus -- it is about
human society at the close of the twentieth century. 1 It is about the fact that our "world" has bec;ome
so small that a sexually transmitted disease can become a pandemic in a few short years. It is about how
divided and unequal we remain: knowing that to be sick in Nairobi is different from being sick in Beverly
Hills; the virus may be the same, but the experience of "sickness" is not. It is about human behavior
- and all the deeper reasons people do what they do: why some seem not to care, while others march and
protest, and still others are deeply effected by something they know little' about. The AIDS crisis is
profoundly about both individual responses and political realities (Bayer, 1992, a.).
The fact is HlV cannot distinguish a man from a woman and has no basis to care one way or the other.
However human society can distinguish and does care -- and that principally frames how women
experience AIDS.
1 By the mid 1980's there was a wide consensus in scientific and medical circles that HIV was the principal
causal factor in the development of AIDS. Throughout this paper HIV infection, HIV disease and AIDS will be
used interchangeably.
Page 1
�,
HIV Worldwide
Since this pandemic began over twelve years ago,· the spread of HIV disease has been halted nowhere
on earth, and continues to increase at geometric proportions. As of 1992 the World Health Organization
.
.
(WHO) estimated 10-12 million people are infected -- over two million cases having progressed to lifethreatening AIDS. Today the worldwide distribution is thought to be roughly symmetrical to population
distribution. For example Third World countries account for 76% of the world's population and 81 %
of all mv infections, while developed countries constitute 24% of total population and 19% of cases.
Women suffer over one-third of the world's mv infections, and children approximately one-tenth. Since
the inception of. this sickness, infections -- on a global scale -- have been fmnly roored in heterosexual
transmission. In Sub-Saharan Africa, ground zero for the epidemic, the male/female infection ratio has
for many years been one to one. This points to the long range trend worldwide (Bury, 1992; Chen,
1991; Hombs, 1992; LaGuardia i991).
Forecasts indicate the disease will continue to escalate among sectors of the world's population with the
least economic means to cope with it, inextricably enmeshing the pandemic in broader socio-political
t
issues of Third World poverty and underdevelopment. By the year 2000, WHO estimates, there could
\
be 40 million cases ofInV infection - 90% in impoverished countries and 70.% among women (Bayer,
1992, c:; Hombs, 1992).
Regarding heterosexual transmission, overwhelming attention has been focused on the role of female
prostitutes, especially in Africa and Asia. Although epidemiologically sound, this nonetheless reinforces
the false image of women as "vectors" responsible for the spread of the virus. However, the opposite
appears to be true; male to female is the more efficient mode of heterosexual transmission. 'l11e principal
path of heterosexual viral spread has four stages: male client to female prostitute, prostitute to subsequent
male clients, male clients to non-prostitute female partners, reproducing females to infants. Clearly, men
and women are playing more or less .equal roles in heterosexual related transmission (plant, 1990).
Yet overall women carry a heavier social burden related to mv infection. Although the social, economic
and political factors vary greatly among regions and cultures, a few generalizations· regarding women's
position relative to men can be safely ventured. First, women universally have a subordinate status in
family and social structures. Consequently, they often cannot negotiate safer sex practices vis-a-vis men,
Page 2
�even when they are aware of the importance of safer sex and have the means available to practice it (i.e.
condoms). For example, thus far very low priority and resources have been devoted to developing vaginal
condoms or spermicides that would be more within women's control (Cohen, 1993, a:; Ndinya-Achola,
1991). Second, women who frnd themselves "outside" established family strucrures, for whatever reason,
face precarious economic and social existence. ,Therefore, many HIV infected women, with 'their capacity
to bear children and engage in socially productive tasks called into question, quickly f'md themselves in
desperate and isolated situations.
And ,currently there are extremely few women-focused centers
providing services and refuge to those
mv positive
women whose families cannot or will not support
them. TIrlrd, women bear the I5ulk of responsibility for rearing children and care giving for the sick and
elderly within families. ,As a result, women living with HIV must confront the prospect of the collapse
of a myriad of social responsibilities far beyond themselves as individuals, particularly if their husbands
and some of their children also have AIDS. Consequently responding to the real needs of HIV infected
women ultimately means responding to a whole family crisis, with crucial services -- like arrangements
for care of surviving children -- extending far beyond the life of the woman herself. 'Today, such a
comprehensive approach to services" for women with AIDS is almost unheard of currently (Bury, 1992;
It
Knesi, 1993). ,
For the vast majority of the world's HIV infected women, however, their despairing situation does not
stem principally from their starus as women, but from the overall conditions of absolute poverty facing
the peoples of Africa, Asia and Latin America. For example, a physically healthy woman can withstand
many potential infections in the course of vaginal intercourse due to the cellular construction of the vagina
walls. However for many women ,in the Third World, conditions of malnutrition and vitamin defrciency ,
can greatly increase the risk of bleeding during vaginal intercourse -- and it is this direct contact with
blood that greatly increases the risk of HIV transmission. Furthermore the lack of the most basic health
care treatment for the majority of women in Africa, Asia and Latin America has contributed to
widespread and chronic existence of sexually transmitted diseases (SID's), even among women not
engaged in the sex industry (Chen, 1991). In tum, the presence of lesions and genital'ulcers associated
with chronic SID's has been,identified as a major cofactor facilitating
:mv
transmission through
heterosexual intercourse, especially in the direction of female to male (NoIT, 1993; Plummer, 1991;
Wasserheit, 1991). In addition, in the majority of "poor" countries the blood supply remains untested
and potentially
:mv
contaminated.
And certainly, once infected" an individual's opportunities for
treatment and services are negligible or non existent. In 1991 wHo estimated that while Africa, Asia
J?age 3
�and'Latin America had roughly 80% of the
mv
infections, they had access to only 6% of worldwide
funds available for AIDS. In the United States the per capita cost of caring for a person with AIDS was
$2.70; for "poor" countries it was about five cents (Bombs, 1992; Norr, 1993).
HIV In the United States
The impact of AIDS on the United States has been tremendous. Someone dies from this illness every
fifteen minutes. As of July 1993 the Centers for Disease Control (CDC) reported 289,320 AIDS cases,
(San Francisco Examiner, Jul~ 14, 1993) The progression of the disease is frightening. While the first
decade (1981 to 1991) of the epidemic counted 144,000 incidences, this number doubled in the next two
years! Approximately 2.5 million Americans are estimated to be HIV infected: roughly. one in every 100
males and one in every 600 females. However, the greatest impact may well be the challenge to our
cherished illusion that modem medicine is invincible and Americans no longer face the fear of life
threatening diseases which cannot be contro lied . (Bayer, 1992, b: ;Hom bs, 1992)
In the mid 1980's, the United States (along with Western Europe and pans of Latin America) was labeled
a "pattern one" country. 2 TIris meant that in the epidemiological profile of homo/bisexual activity and
intravenous drug use (IVDU) were the dominant factors in HIV transmission. Although this is still true,
the net effect was to create the false impression that HIV is a "deviant" male disease of no threat to
"nonnal" non IV drug using heterosexuals. As a result both the risk to, and reality of, women and
mv
remained more or less invisible during most of the 1980' s. (Bury, 1992) More recently the situation has
begun to change. In the early 1990's the CDC announced that women constituted the fastest growing
category of AIDS cases, increasing from 3 % of all incidences in 1982 to approximately 13 % by the end
of 1992 (Cohen, 1993, a:). In the same year, while new cases among men rose 2.5%, among women the
rate was 9.8 %. Also significant was the fact that, for the first time since the epidemic began, more
women developed AIDS because of heterosexual sex (nearly 60 %) than IV drug use, (San Francisco
Chronicle, July 10, 1993) The trend is even clearer when we examine
mv transmission among young
2 In. the mid 1980's the CDC identified three zones characterized by profiles of HIV transmission. Pattern
one is defined as countries where the major transmission was among homosexual males and IDVU's; pattern two
is dermed as countries where the major transmission is among heterosexuals; pattern three is dermed as countries
where the pandemic has not yet emerged sufficiently to determine the major epidemiological profile. However,
increasingly in the 1990's former pattern one zones are being labeled "pattern 11Il" which points to the overall
direction of the epidemiological shift.
Page 4
�people.
It is estimated that one out of five people with AIDS was infected as a teenager; among
teenagers with AIDS 26 % are female. (WORLD Newsletter, June 1993)
Paula Treichler (1988), reminds us that the tennsand metaphors used to "discuss" an illness serve in
many ways to "construct" it -- i.e. how it is perceived and responded to socially. How can it be that a
disease which from its· very beginning in Africa, clearly affected women through heterosexual
transmission would be expected to behave some other way in the Uni,ted States? The "discourse" itself
sets up a series of "them" and "us" dichotomies. In the earliest years, "them" were the mysterious
Africans and Haitians. Who knew what strange sexual behaviors and rituals existed among "them" , thus
accounting for heterosexual transmission? The point being that "us" (civilized Americans) need not
worry. Inside the United States in the early 1980's, it appeared that only "them", the "deviant 4-H club"
(homosexuals, heroin addicts, hemophiliacs and Haitians) had to worry about this new disease. For the
rest of "us" (nonnal, mainstream Americans) there was no danger. The gender of the 4-H'ers was
clearly male; women were coded, in passing, as "others'~ or as possible sex panners of the deviants. By
the second half of the 1980's women could no longer be kept out of the discussion completely; but the
ones talked about were the "them" women (prostitutes, sluts and drug addicts) who were apparently
getting and spreading HIV. The old "typhoid Mary" image was resuscitated as female sex workers were
described as "reservoirs of AIDS virus" infecting their "innocent johns". But the worse thing these "bad
girls" were doing was being "invidious vectors" passing on AIDS to their new born infants. All this
served as a warning to the "us" women that by remaining "good girls" they would not need to worry
about AIDS (Treichler, 1988).
In the 1990's many of the cruder metaphors regarding the "kind ofwomen" who get AIDS have receded
and are being replaced by a more sober appreciation of actual risks to, and trends regarding, women and
my. However, the bad news is that HIV disease is showing every sign of intersecting with the most
stubborn and insidious "them"/"us" dichotomy in United States society -- the color line separating whites
from people of color. Nowhere is this emerging trend more clear than among women and
mv disease.
As of June 1992, African Americans comprised roughly 12 % of the total United States population, but
accounted for 30% of the AIDS cases, and among women with AIDS, black women number 53%.
Latinos constituted about 9 % of our total population, but accounted for 17 % of AIDS cases, and Latina
women account for 21 % of all women with AIDS. A full 80 % of infants born with AIDS are born to
African American or Latina mothers (Cohen, 1993, a:; Hombs, 1992). (In New York City, as early as
Page 5
�1988 one out of every 61 delivering mothers was HIVpositive.) By 1991 AIDS had become the leadina
.
~
cause of death for African American women in New York City between the ages of 20 and 40 (Joseph,
1992).
Stephen Joseph (1992), New York City's Commissioner of Health from 1986 to 1990, presents a
disturbing yet compelling argument. He notes that the fear and concern of the late 1980' s about the
"heterosexual epidemiological shift" in
mv had
subsided substantially by the early 1990's. Why? Not
because such a shift is not currently underway, but rather because it has become color-coded.
All
indicators suggest that by the tarn of the century HIV disease will be endemic (along with poverty and
drug addiction) in minority, inner city neighborhoods throughout the country. The profound political and
socio-economic divisions created by racism in the United States will shape not only the development of
the AIDS crisis during the next ten years, but also how it is perceived, addressed, what resources will
be committed to treatment and services, the distribution of those resources, etc. Undoubtedly, for the
majority of women living with HIV in the United States, issues of race and class will frame their
experience of the disease .as much as those of gender (Joseph, 1992).
Women As Whores and Dope Fiends
When it comes to HIV disease there are really no high risk "groups", there are high risk "behaviors".
All prostitutes, for example, do not necessarily get AIDS -- yet many women who are mv positive may
be engaged in or be coming out of prostitution. This is also true for drug addicts:
mv positive women
may be surrounded by drugs, be using drugs, be "kicking" drugs, or be clean and sober.
Howe~er,
much
of the attention paid to HIV infected women, has been equated to prostitution and drugs. This has served
to moralize the virus, and blur the basic threat of HIV infection for all sexually active women. Yet the
stubborn truth of the matter is that at present the majority of women living with HIV and those at high
risk to contract it are engaged in lifestyles of drugs and prostitution. For this reason, these behaviors
must continue to be addressed and studied carefully (Mann, 1991).
Prostitution is a world unto itself, yet at the same time it is an integral part of the mainstream society.
Prostitution is society's "safety valve" allowing the "normal" and .irespectable" to act out sexually without
paying the price of a complete lifestyle change. From the prostitute's point of view, "it's a dirty job,
but somebody has to do it! The "glamour" range is very broad, stretching from high class "escorts" to
Page 6
�different scales of street hookers to "toss ups" (sex for drugs) -- but the bottom line "service" is ail the
same. In addition, estimates are that nearly 80% of prostitutes are drug users, with IVDU concentrated.
more among street hookers. In a 1987 American study, approximately half of the prostitutes surveyed
reported they shot drugs regularly or occasionally (Plant, 1990).
Early HIV education efforts directed toward prostitutes showed them to be concerned and willing to avoid
high risk behavior in their work. Many prostitutes report they are successful in practicing safer sex with
their clients.
Prostitution (with condoms), is no higher risk an activity than nonprostituting women
. practicing safer sex with muleple partners. Consequently, high risk factors among prostitutes usually
stem from behaviors not inherent in prostitution itself; these include IVDU or alcohol/drug induced
impaired judgment leading to inconsistent practi<;::e of safe sex with clients. Interestingly enough, the
highest risk factor for non-IVDU prostitutes is one they share with all women: the unwillingness or
inability to practice safer sex with their partners! (Bury, 1992; Darrow, 1990; Plant, 1990; Thomas,
1992).
Drug addicts, of course, come in all colors and with all different size pocketbooks. But the kind of drug
induced behavior most associated with HIV transmission is all about poverty, racism and inner city
ghettos.
Sharing HIV contaminated needles is probably the most effective way of transmission. The "shooting
galleries" in poor neighborhoods were set up to do just this -- you bring your own dope and then rent
or share a needle to inject it. In hindsight, the virus probably spread in the early 80's
~e
wildfire
among IVDU's on the East Coast about the same time it was running throughout the gay community
nationwide. It only appeared on the surface like a "second wave" of infection because IVDU's were
mainly poor, colored and' engaged in daily illegal drug activity -- disenfranchised and marginalized. Yet
by 1983 it was estimated that 50% of IVDU's in New York and New Jersey were
mv
infected. It is .
possible that as high as 65 % of AIDS related deaths among IVDU's in New York went unreported in
these early years since they showed up in large numbers to city hospitals and clinics and their eventual
deaths were simply attributed to bronchial pneumonia and bacterial infections of the heart valves (Joseph,
1992).
Women in these communities were involved from the onset. Possibly 25 to 30% of IVDU's are women
Page 7
�and many were infected in these early years along with men .. Other women were involved indirectly;
though they themselves did not shoot drugs, their partners did and they were in turn infected through
sexual transmission. These women comprised the buLk of the first generation of women with AIDS in
the United States.' Of all those diagnosed in the first five years of the epidemic, roughly two-thirds were
. IVDU's and one-third were partners of IVDU's. This proftle has only begun to change in the past few
. years (Cohen, 1993, a:; Joseph, 1992).
Early HIV education efforts among IVDU's, like prostitutes, found them receptive to avoiding high risk
behaviors (especially if they kpew someone who had already died of AIDS). The basic problem of course
is that the addict has an overriding compulsion to use d'rugs, so if the dope is available, but not a clean
needle or means to clean it :-- the temptation to revert to high risk behavior is tremendous. (This reality
underscores the urgency, from a purely public hea1th/hann reduction standpoint, of establishing "needle
exchange" programs, as well as the substantial cost in human lives of the controversies that continue to
stall progress in this direction.) Also, similarto the phenomenon among prostitutes, a recent study of
IVDU's in Florida indiCates that even among those who stop sharing needles, 77% of the men and 69%
of the women report that they are likely to continue to practice unsafe sex habits in their personal lives
(Cohen, 1993, a:).
Minority communities and neighborhoods hit hardest by HIV have witnessed another epidemic over the
past ten years -- crack cocaine -- as well as the horrifying prospect of the two epidemics intersecting.
Although the actual mode of mv transmission in these instances is principally unprotected heterosexual
sex, the activity is completely framed by crack use. In New York City, from 1980 to 1990, c?caine use, .
especially among minority youth, has gone up 2,000 %. It is estimated that the number of crack addicts
now exceeds the number of long term heroin users (Joseph, 1992).
The percentage of women smoking crack cocaine is, greater than those injecting heroin. In many inner
city neighborhoods women can make up as much as 40 % of the hardcore crack addicts. Once hooked,
women fmd themselves extremely vulnerable and quickly left with nothing else to trade for drugs except
sex. In many ways the "crack houses" of the late 80's and early 90's have become the heterosexual
version of the gay bathhouses of the 70's and early 80's. By 1990 in New York City "crack moms" were
four times more likely to have SID's concurrent with their pregnancies. Another study conducted in
1989 among South Bronx crack addicts showed an alarming rate of HIV infection. Of men with SID's,
Page 8
�30%'were also
lesions were
mv infected; the rate among women was 9%;
mv positive (Joseph,
19% of both men and women with genital
1992).
In many ways we've come full circle. The main avenue of heterosexual HIV transmission in the U.S.
(which effects women and in turn children) is framed· by similar social conditions of deadening poverty,
chronic STD's and little or no access to medical care that are found in many parts of Africa, Asia and
Latin America -- with a conspicuous overlay of drug addiction, stemming from the demoralization and
rage of having to tolerate such conditions while locked in the inner cities of the richest country in the
world. The drug addiction, th~ STD's, the demoralization and the rage can not be seriously addressed
without targeting the endemic poverty and racism at it roots.
However, even the "band aid" solutions are grossly inadequate. The minority ghettos of New York City
and other east coast cities are, in many ways, the ground zero for heterosexual HIV transmission. In New
York alone the public health care system has been in various stages of deterioration and collapse for
decades -- even before the advent of AIDS. And there has been no expansion of treatment facilities for
more than twenty years despite a twofold increase in the number of substance abusers, during the same
period. Women in particular face even more difficulty in accessing treatment. Although there has been
slight improvement in recent years, this is dwarfed by the magnitude of the problem (Joseph, 1992;
Springer, 1992; Wilson, 1992).
In short, the overall social context which shapes the problem of women and AIDS in America's inner
cities does not look promising.
HIV and Women's Bodies
Considering the number of women who lived with and died from
mv
disease during the last twelve
years, frightfully little is known about the natural progression of this illness in women, opportunistic
infections particular to women, differential effects of various treatments on women's systems, etc. For
the most part, women with mv continue to be diagnosed later and die sooner than men. It was not until
1992 that the CDC included cervical cancer as. an AIDS defming illness. Chronic pelvic inflammatory
disease and vaginal thrush were also recognized as
mv symptomatic conditions,
Page 9
which by themselves
�do not constitute an AIDS diagnosis unless they are accompanied by· a CD4 count of less than 200. 3
Even this new CDC definition is being contested by those who argue that chronic gynecological infections
continue to cause serious illness"in women whose CD4 counts fluctuate above the 200 mark (Bury, 1992;
. Cohen, 1993, b:; Douard, 1993).
The relationship in a woman's body between sex honnones, reproductive functions and the immune
system is still not very well known. Add to this the impact of a fatal immune suppressant disorder, and
the situation becomes quite urgent.
Yet reports from the most recent Ninth International AIDS
Conference indicate that only a handful of the thousands of scientific papers submitted focused on women
specific manifestations ofHIV disease. And in the United States women continue to be under represented
in clinical treatment trials. Consequently, only an initial sketch of the physical aspects of HIV in women
is available at the present time; much more needs to be done in both research and treatment (Cohen,
1993 , b:; WORLD Newsletter, August 1993).
The immune system's initial response to HIV infection, a latent asymptomatic period, seems similar in
men and women. Also shared are many of the initial symptomatic diseases like chronic swollen lymph
glands and oral thrush, progressing to more life threatening conditions such as a variety of herpes viral
infections, cancers, pneumonias, infections in the central nervous system, tuberculosis, etc. However,
so far the fact is that no comprehensive studies on the comparative progression of HIV in men and
women have been done.
As regards an individual woman's risk factor to anyone of a number of
presenting illnesses, this could be influenced by other conditions not inherently linked to her sex; these
include genetic factors, a history of drug addiction, heavy smoking, etc. (Bury, 1992; Cohen,. 1993, b:).
Not surprisingly, it is gynecological infections in which the particularity of HIV in women comes to the
forefront. Recurring vaginal yeast infections (vaginal candidiasis) will often persist very early in mv
infected women -- even prior to oral thrush .. The same is true of upper genital tract infections (pelvic
Inflammatory Disease - PID), a non specific infection often associated with some concurrent STD. Both
conditions are also fairly common in women who are HIV negative, consequently mVpositive women
3 CD4, commonly referred to as helper T cells, are the principal target of HIV. Because they serve as the
"quarter backs" of the immune system, their incapacitation hastens the collapse of the whole system. For the past
ten years "T celJ counts' have been utilized as a key marker in determining the relative deterioration of the irrunune
system. In 1992 the CDC established a CD4 count of 200 or Jess to be one of the basic factors in determining an
AlDS diagnosis.
.
Page 10
�are often misdiagnosed and not encouraged to test for HIV until the disease has progressed quite far.
For HIV women both these conditions can become relatively chronic and severe (Cohen, 1993, b:).
A wide degree of cervical abnormalities is also fairly.common and thought to be associated with the
presence of human papillomaviruses (HPVs). The range of disorders stretches from benign genital Warts
to precancers (dysplasia andlor neoplasia) to developed cancers (invasive carcinomas). The severity and
. progression appears to be closely linked to a woman's weakening immune system. In order to carefully.
monitor such a condition, HIV positive women should have Pap smears 3 to 4 times. yearly, but again,
at present no clear treatment pl-otocols are in place (Cohen, 1993, b:).
Pregnancy and childbearing for HIV positive women brings up important personal and social issues.
Unfortunately, however, many of the related physical issues have not been studied carefully enough. It
is important to separate two closely related questions: fIrst, what is the possible effect on the health of
the mother? and second, what is the possible effect on the health of the baby? (Bury, 1992; Kurth, 1993;
LaGuardia, 1991).
Pregnancy itself places considerable physical strain upon the woman and actually mimics a state of
.immunosuppression. Therefore, it was originally thought that pregnancy in HIV positive women might
speed up progression of t~eir own disease. Clinical observations and some studies indicate, however,
that women who are asymptomatic or in early symptomatic stages of HIV can complete a pregnancy
without seriously jeopardizing their own health. Despite this good news, predictions on an individual
basis are difficult because there are so many confounding factors such as on going drug. I}se, poor
nutrition, lack of prenatal care, etc. (Bury, 1992; Douard, 1993; Meirik, 1991).
Regarding the health of the baby, some initial controlled studies in the United States indicate that, with
good prenatal care, HIV positive mothers show no higher incidence than
mv
negative mothers for
premature deliveries, low infant birth rates or retardation. Given the immune compromised system of
the mother, however, it is important to monitor the occurrence of infections such as rubella, hepatitis,
etc. since these could seriously affect the fetus (Hepburn, 1992; Kurth, 1993; Meirik, 1991).
Regarding the chances of HIV transmission from mother to baby, much is still unknown.
mv can pass
through the placenta and infect the fetus in utero, but exactly how is not yet known. The baby can also
Page 11
�,
.
be infected by ingesting the mother's blood during the binh process, (It is not clear whether a deUvery
by cesarian section qualitatively limits this possibility.) There is also some evidence that a baby can be
infected through breast feeding, although there is wide agreement that this risk is relatively low. Mothers
at the late stages if
mv
disease appear to have increased chances of transmitting the virus to their
newborns. (And ironically, possibly mothers at the earliest stages of infection before the virus has gone
into its latent stage~) Currently the overall chances of a mother· infant
mv transmission
in the United
States is estimated to be about one in three. (Some European studies place the chances as low as 11.5 %,
some African studies as high as 70 %.) Clearly there are too many confounding social variables to be
able to use the ratio in predicting any individual case (Kurth, 1993; WORLD Newsletter, August 1993;
Berger, 1993).
Conclusion
Living with
mv disease is a profoundly individual experience for men,
women and children. It places
people in touch with their human frailty and mortality. For the woman living with HlV, she is engaged
in various roles and activities that help make up who she is -- a mother to someone, a teacher, a bank
teiler, a wife to someone, or maybe a lover to another woman, a sister to someone else. As with other
life threatening diseases,
what are my options?
mv relentlessly presses questions -- what am I doing with my life? and why?
mv forces individual decisions -- easy ones, hard ones . . . as the disease
progresses, new losses, fewer choices, more decisions.
Yet for women living with HlV their individual choices are profoundly shaped and severely limited by
social factors beyond their immediate control. Their "real" options are effected by their relationship to
men, their role in the family, their status in society -- and in the United States particularly, the color of
their skin and the neighborhoods from which they c'ome.
Increasingly, HlV disease has become recognized as a chronic disease. In the earliest years people died
of AIDS quickly and mysteriously; today we speak of "living with
mv"
for possibly quite a number of
years after infection. As with all chronic diseases, social factors come to the forefront in determining
what medical treatments are available, how one is treated, cared for, provided for, etc. This is certainly
true when we look at women and
mv disease.
The vast majority of women living with this virus found
Page 12
�themselves subordinated, marginalized and poor prior to infection. .And it is these social conditions that
detennine much of how women "experience" HIV disease, how they cope, organize themselves ... and
fight.
Page 13
�THE WHITE HOUSE
,WASH I NGTO N
May 17, 1996
MEMORANDUM FOR CAROL H .. RASCO AND PATRICIA S. FLEMING
FROM:
RICHARD SORIAN
Subject: .
•
San Francisco Regional Briefing
I.
WGIS~ICS
, Friday, May 24
DATE:
TIME:
1:00-3:00
LOCATION: Health Commission, 101 Grov:e Street, Suite.300, 3rd Floor
CONTACT:
II.
PURPOSE
We will conduct an issues briefing for the San Francisco/Oakland community
focusing o.n five topics: research, care, prevention, housing, and drug
approval. A 30-minute plenary session will precede workshops on those
'e'
.
topics.
You will be greeted by Mayor Willie Brown, who will host the forum. He
will open the forum with brief remarks and i'ntroduce Congresswoman Nancy
Pelosi for brief remarks. Congresswoman Pelosi will then introduce Carol
Rasco for boef remarks and Carol will introduce Patsy Fleming for brief
remarks. Jeff Levi will then go over the logistics for the workshops.
Participants will be permitted to choose their workshop and given the
opportunity to move from one to another.
. Carol's remarks should focus on the President's commitment to protecting
Medicaid, to funding the Ryan White CARE Act, and to fighting for resources
for AIDS prevention and housing. Patsy',s remarks will focus on some of our
recent victories and our ongoing fights with the Congress over things like the
Doman Amendment and Medicaid.
There will be no question and answer period during the plenary session.
Each workshop will feature key federal officials and members of the Advisory
Council. The federal officials will make brief presentations and encourage
discussion.
�•
ill.
PARTICIPANTS! AUDIENCE
Mayor Brown, Congresswoman Pelosi, Carol Rasco, Patsy:Fleming, and Jeff
Levi.
Audience members will include health care providers, AIDS service
. organizations, people living with HIV! AIDS, and activists.
IV.
FORMAT
·12:50
1:00
1:10
1:20 .
1:30
1:40
1:50
3:15
v.
MEDIA
Open press.
Arrive Health Commission, Greeted by Mayor Brown
Begin Plenary, Remarks by Mayor Brown
Remarks by Congress~oman Pelosi
Remarks by Carol Rasco
Remarks by Patsy Fleming
Remarks by Jeff Levi
Workshops Begin
Workshops Conclude
�TH E WH ITE HOUS E
WASHINGTON
May 17, 1996
MEMORANDUM FOR CAROL H. RASCO AND PATRICIA S. FLEMING
FROM:
RICHARD SORIAN.
Subject:
. AIDS Office Reception
I.
LOGISTICS
DATE:
May 24, 1996
3:30-4:30 pm PST
LOCATION: San Francisco AIDS Office
25 Van Ness Street
CONTACT:
TIME:
II.'
PURPOSE
Informal meeting with city officials and community members.
m.
PARTICIPANTS/AUDIENCE
All briefing participants.
IV.
FORMAT
Greetings by AIDS Director. Brief remarks by Carol and Patsy.
V.
MEDIA
Closed Press.
�r. u!.
nAY-16-86 THU 08:48
ALAMEDA COUNTY PUBLIC HEALTH DEPARTMENT,
() FFI C~ E () F ,A! D S A. D MIN 1STR/\ T I() N
Information Sheet
OAKLAND ELIGIBLE METROPOLITAN AREA
,
ftlVIAIDS fi'.ltirlics
II
III
II
Over 13,500 individuals have been infected with HIV since early 1980•.
5;745 are r.:urrently diagnosed wi,h AIDS in the EMA.
Thirty five percent of all AIDS cases are in the African Amerir.:an community, which represent only 14% of the EMA
~~~
.
. ,
e A 1994 CDC study shows the Oakland EMA has the highest seropreva/ence among women giving birth: lout of 60 African
American women bearing children is HIV infected.
.
(If thE: fpid('mic and itel.l({U/ IndicatOls
,
Men-witJl..men and women-with-men are at highest risk for HIV infection. '
AIDS is growing fastest among IDU'$ especially those who use crack, cocaine, and heroin resufarly.
HIVIAIOS i~ "pooling' among people who are living below the poverty level, not completing high school, unemploved, and
homele$s. Many reside in the northwest urban corridor from Oakland to Richmond.
Thore are recent increases of acute hepatitis-B, tuberculosis, and teen pregnancy, all ofwhich are surrogate indicators of HIV.
The EMA has some of the highest rates of poverty, homelessness, and de$paii' in the State of california.. Nine percent of the
general popu iation is below poverty level.
There is a 70% increase nationally in incidence and prevalence among adolescents. Anecdotally, service provider5 believe the
same is true of the EMA.
, Tr(>mi~
II
:II
II
II
II
iii
e
•
a
•
II
II
II
•
The Alameda County HIV Prevention Planning Council (HPPC) was formed in 1995 to ej'\sure community input in prevention
planning. The HPPC identified the following:
'
Peer educatiOf) that includes a combination of street outreach, one-to-one and group counseling. on-site reduction education
and coun5eling is essential to access "hard-to-reach* parts of the community, e.g. IOU's.
HIV testing must be conducted in tandem with intensive counseling. .
Prevention casemana~ent is effective with persons who must also cope with issues other than HIV especially substance
abuse, mental disability, homelessness, or a combination thereof.
linkage, to earl}' intervencion as well as repetitive exposure to prevention,messages are essential to slowing the spread of the
virus.
Needle exchange has effectively slowed the spread of HIV among IOU's.
Media campaigns that are tat8eted to specific segments to the communIty are more effcaaive than.8eneric or -borrowed'
messages.
. Community-bulldin, activities especially that include revered indisenous social structures, e.g., families and faith
communitie$, are needed to create alternative social norms that assist slaw tha spread of HIVIAI OS.
• The Title' HIV Health Services Planning Council, which Wa5 formed in 1991, identified three priorities last year ali vital for
survival: p,imaty care, hoUSing, and food. These services are severely deficient in the EMA.
• case management is assessed as a high priority that is essential to ac::te5sing the above vital services. as well as variety of
services that improve the quaUty of life of persons Hving with AIDS.
• The Planning Counc;i1 also identified the need for more coordinated service planning and provision especially betWeen Titles I
and II plannlns bodies, and hOUSing and service providers, respectively.
• Women, children,'adolescents, and families have been histOrically underserved. The HIVFamily Care Network, the Title IV
project, Was created to pn::wide services to these groups. Servic:eSinciude primary care, mental health therapy, case
management, and substance abuse Ereatment. The Prenatal HIV Testing Demonstration Project works with prenatal care
cUnia to improve HIV testing via standardization of education and Counseling.
• Service providers see a need for,more targeted oUtreach to adolescents throughout [he EMA, but especially among urban youth
with hiSh rates of pregnancy and 5""ually transmitted diseases.
Mandatory testing of preanant women will likely ad as barrier to testing and prenatal care.
II SSNSSI benefits are to be denied to HIV..positjve clients with a substance abuse diagnosis. Many EMA clients have such a
dual diagnosis, however.
• There'ls a lack of attention to the incarcerated in both prevention education; and
.and treatment In the EMA. the numbers
of prison inmates with HIV infection is i n c r e a s i n g . '
.
care
- - ..----- ----._---- - - - -
-----~----
----
�MHY
DHH~/tlHRD
.LO·~O
.!Ti'TLE II·PROFILE'REPORT:California---.·.·-
'
e
..
Project Officer~ Anqrew Kru%ich
Project Director: Wayne Sauseda
JNQlNG..HI$T..o.BY
_,.,---B.~ca.IYearJI .~1 _,_, 1992,'
"
__ _1,994_L.19~_5_11·. Tota.l_
j
, . 1993
··'-r-" $12,953,7S3i -S1S.559.i7fi·
$!!.183.3!BI. ,S2S,1.72,762j'
Re9uireifstfite'MatChJr 2.59O,151-j--3.a89J93
T 5.727,1931 .14,086.381
,
Title /I Granr--"
i
I
Total
!I
$15,544,5 04 1
$22,911.171 I
$19,448,964 i
:-."-~.JUn.95·--1
$42,259.1431
$2(~6T::Jr-.~101,736~257
13.925.8691
$41.793.062\1
$40.220.586
$141,956,843
I
I ~...tfrQg~.m Comp~nent:., ._. .II Expendi~.ure1i9.~# Served J BYdgete.~1i9~ Served
Care consoiiia -_. ._-! .,
:15ijf- $1(836.004)
;1
I
I
j
..
-
HIV
Treatment.
Home & Community Based Care
Insurance Continuation
Admini5trationiPIanning
I'·
S8.591.6891-- 21
5.073.3511
unaV4lilablell
I
II
1,718.338 1
23.Q63
7.000
'7,774.482.
3.,34.1
1.200.000 1
600.000
HIV Care Consortia Detail for FY1993
Health Care
Mental Health Services
Home HealthlHospice
Support &Enabling
1.620.0001
1.200,000
2.742.2761 .
62311
i
I
I
3,300
1;100
$1,069,683,-'-' ",-_..
i
CONSORTIA EXPENDITURES
283,310
597.601!
California (FY 1993)
6,641,095 i
I
•
• E,xpenditurea mftY,differ from smounts awarded '1'1 thst
year due to prior yeaf ClJtryOVtlrs and unObligated funds
carried fOfWBrd,
.
/
.............
.---.
(n.3%~/'
I
I
I
iI.
\
:'~ Support
I
•
(7.0%)
....,..
& Enabling
Health Care
a Mental Health Services
aHome Health/Hospice
ifROGRA.M..AC.CQMaJSHMEtfiS/EXAMPLES.:
a
,.
I
j
EXP.EHWIUREJlE..EUND.S1or F..YJD3._1IHlEY 10£
I
i
INC~ED.!:J1l.MBER P..E.P.EOP.I.,UN CASE; The nlJmber of people receiving health care and support services through .
the states 42 consortia which serve aU 56 counties. has grown from an estimated 2.000 people in 1991 to more than 23,000 in
FY 1994. of which approximately 21 percent were women. children and families. Also, the formulary for the AIDS Drug
Program has expanded from '2 to 25 FDA approved medications since 1991. while the number served has increa&ed from 1,050
in 1991 to 7.000 in 1994. More than 3.300 people received caSEI managed home and community based care SBlVices. The stale'
estimates more than $21 million in cost savings as a result Of a 50% reduction in hospitalization attributed largely to the
availability of case managed home and community-based health and support services operated with state and Title II funds.
ADJJEO. ~ S,ERYICE$.: More than 150 low-income persons received medical, dental, prescription. laboratory case
management and suppon services In the first year (1994) of operation of (i cliniC at the Natividad Medical Center in Salinas.
NEW..AC~SJ!I)JNrrJLHEAL:ttt.CARE,nSTEM: Opr-ned a womens clinic through "CARES." an established provider
in Sacramento. which also developed B training program tor physicians and dentists. Developed on outpatient recovery
. 'ogram. United for Life. for people with AIDS with an alcohol/drug dependency in Hayward, CA (1993).
�DHHS/BHRD
I D : 301.:.. 4 4 3'" 814,5
IVI H T
1.
I;)
j ~
.I. .... V v
~:::' v,~
,
,..,..,
KYAN WHITE PROGRAM PROFILE:· California
APPROPRIAIIONSJilST.a.BY
01.Ju
Project Officer: Andrew Kruzlch
ProJect DIrector: Wayne Sauseda
1
HRSAAIDS
~ROGRAMS
--~
Title I
SPNS
lltJe IIIb
Tltle IVlPeds Demo
IN STATE
IL 1991
3
1
L
1992
.4
!~
3
!2
QaDtBl
•I
1994
6
!
10
13
J
14
2
6
2
15
3
' 11
1993
" 5
1995
J
10
:reO
3
8
TaD
TB
··-------r~cauforn~'..
"'I
I'
. Sa_ ROIIIII',I4Iu_
Ukllflr
rn~ m(b) '1"
. ~"'!"'----'
Gutrn~lJU~
Tir-lo-l---""'L tr.rro;ill<bfl~-Titlo W(b)
Title IV .
.
:::...J
SPNS
.,.....-
Tide I
TitiaN
SPNS
~C"'Z
ITitle In(b)
(
VtlJlilnr
ITitle lV,
.1M AIf,'/"
Titlo 1
Titi", m(b)
Tide IV
SPNS
.. ------.
Tille 1
Title m(h)
SwuCapita1
nt1~n
--.,.----
�MRY 16'96
ID:301-443-8143
DHHS/BHRD
lHg
14:07 No.002 P.U4
AIOliLHIV -eplgEMKL.Itu1:IUIAWtwnuiii!viflgu@8 tbroUII~
us AIOS tases:
36',1 S4
.
California Population:
State AIDS cases:
65,94B
State HIV cases·:
' See Footnote
Demographics for 1993 AIDS cases only
Women:
7.5%
Men:
92.5%'
O.3~
Children «13):
Black:
Hklpanie:
~in 1993)
L.,.;l;~";":".;;..I....-:-----";;"';':';';"';"':":';;";:";:""
.
17.7%
18.9tt6
60.8%
White:
----_._--_._--,---,
NEW AIDS CASES'
by Calendar Year
20
.=
tl
fIJ
15
c
-0 ; 10
... _
I/)
"
.8 ~
§ ...
z
5
1988
1989
1990
1991
1992
Calendar Vear
t :::..... ".
I·.'
I••
,
to:-.;!' .
~~:".~~(~::!:~:~.~:~'; '-,':::"
HIV Infection cu•• (not AIDS}. reporr.d in 1993. ThroUQl'lPec.mbM 3J. fHl " . . , . . ~ ~ . ',..,..,.".
reporting by mll1Je 01 .11 pittaM! with confilT/H!Jd HIli Infection. In .ddltion tg , . , . " " tI
. .
AlPS tllflf'Uporls received during
01~ay·95
19~3 refl'Bct thtJ f:ltp.nsion of In. AIDS ~
r.pfffllani HIV.inffJct.d pereom; wit" a.VfIfPI1 comp1f:lmilltJd ItnmUM .~,.".. wIIh
1993 elles 11J5Utted IfWTI the fltdtlfinilion of AIDS by 'h' Cent.", (or
..
m..."
. , . "t?l~fjJ.
t...-_ _ _ _ _ _ _ _ _ _ _ _ ,.---,,.:....--:----~
.
~ult1nfl t:OItflfi.nti.,
�·DHHS/BHRD
14:09 NO.UUL
MAY 16'96
ID:301-4 43-8143
~.U~
----.-
II
TITLE I PROFILE REPORT: San Francisco
1
EMA:
City of Sin Franclaco and 3 other counties
.1.624,203
Project Officer: Sheila McCarthy
Project Olreotor: Valerie OOIT
Total Population
IJ::IE LPCAL EPIDEMIC (cumulatlYI tlgUUtl thru 12131/9.3l
US AIDS eases
' 361,164
State AIDS cases
65.948
EMA AIDS eases
18.149
as a percent of State AIOS caSK
100.00%
EMA AIDS Demographics for 1993:,
18.3%
5.0%
Women
Men
95.0%
27.5"
Children «13)
0.1"
14.3%
10.4%
71.7%
5.0%
Black
Hispanic
Whltl
I
I
I
,
New AIDS cases by calendar year"'
I
.-.f.re~19a8 I .1988 j 1989
1990
1991
1992
1993
Total
_. 3,798
1,708 'I ·'.786
2,111 ..
1,976
I 2,111 14,655
'B.~
- On o.c.ntw 31. fi,Z the Ollit:. 01 M.nllgolmll'Jt lind Budpt IInnounctd new Motropolltlln sr.fjatkt.1 Alii" (M6A) defll'lltJon•• whIM
-r
reflfHJI th."".'n the US popuilltion .1 d.temrlfltld by th. 199D ~MUIi. AIDS t.n.,.ported
In the tlefinltlon 01 MSAa " w.u 118 the eXpIIM(on of the AIDS '!llVellle,," CIIBO rtetlnition.
E.!JbIDING HJw:mY.
..
1994
Fiscal ~dLI===19=9=='=?=:=1=99=2"=::*==1=9;,:;;9",,,3=?=====~=
Formul!..-.
Su
Total
lemental
r-
10.594.76$
$12,113,8)'
EXeENDlllIBE..O.E..EIJW).uo.!..1QD3~
15,754.151
$1U44,229· $27,211,076
det.
""'eot thNe
I
1995 JL
S19.ii58:9601
1S.349,~e.i $".4~+-......;..;.;;.:
$6,393.96&
'6.319.965
I
.It., thlB
$19.126,618
20.153.440
12.&43.235
S:SU10.400
$S1,en,914
Total._
$84•••804
S8566S.556
$130,055.450
.
Health Care
$16.573,489
60.9%
Support Services.
. $8.148,461
29.9%
Other Local Priorities
$','34,292
4.2%
Planning Council Support
No Expend.
N/A
Program Administration
$1,360,854
5.0%
* ExpemJlt..,. m.y differ from IImcunta ,w.rded In th.t ya.,. due
to prior year C,nyoVMI 'I'/et unoblitltttd fund. ,.m" lorwerri.
1993 Expenditures
San Francisco EMA
IOeiPJiOMAM.SS:DllCE fRIORIIIES fgLjJm.4
&1
Primary m8Cfical care
£iJ Housing related SeMC$S
Food bank/home delivered meals
iii Dental sorvices '
Ii?J Mental health services
c;h."QeIJ
(5.11%)
'
m
••_ . _ _ _ _ _ _ _ _(:.:..2IL_ ~;.:..,_ _ _ _ __
.....
.• Health Care .13 Support Srvcs.
• OthlPriorities m Prog. Admin.
es.~~~~s
INCRFASED .NJJMI1.M 0E.1!ED.&l!LCAB.I;;. In the last year, mora than 33.c.oo hours of medical Gare, 54,000 hou~ of
home health care, 120,000 ptescriptions, 25.700 hoLlrs of mental health servicot, and 35,800 hours of $ubl1ance BbU58
treaunent were provided through Ryan White funding to peopfeliving with HIV/AIDS. For 8lC11mple. the number of persons
receiving service. throuQh the Urgent Care Drop-In Program of the Ward 86 Clinic at San Francisco General HOSpital, has
grown from 2OO'people per month in 1991.to more than 400 per month in 1994 (2/3 ofwhorn are undUplicated patitnts), While
the Ward S6 Clinic itself $eNes moll! than 2,500 patients per month, Tha School of Oentistry at ttle University of the Paclflo ,
has quadrupled their hours of dental service and added more than 700 new clients to their client balie in 1993-1&94.
ADDED tJEIt. §Dl}flJ;.£;. In 1994, added HfJlJlth Cent$!' ", a new primary OIIr. site. to the city/count)' health elinic$;
provid~ mQre than' ,000 hours of primary medical care. mental health service&, neuropsyd1iatric testing,
management;
medicine management and health education to
multi-diagno.ed patients in the first YfJlJr (unduplicated patients).
I ~.emtiLTJUlEALTH C1!BE sx.STEM;. Eatabllshed Women'. Pla08. a residential psychiatric and subStance
~~oatm~program 101 women with mulUplo,dlagnosel. providing 4,000 re~ldent days to 70 women in 1994. • .
I
eo
cae
�ID:301-443-8143
DHHS/BHRD
MAY 16'96
14:10 No.002 P.09
San Francisco EMA Title I Project Overview
Progr.m S'IfIIIgth6
..
Comprehensive HIV care-services infrastructure with substantial experience in
providing accessible services to 8 very diverse population.
..
Extensive epidemiological data on HIV populations within the EMA that is used for
, on-going planning and evaluation of services. '
..
..
l,
Strong coordination and linkages between HIV prevention and CARE services
Established Caps on, Costs per Unit of Service for CARE funded services. AU CARE
funded service contracts are based upon standardized capitated rates of
reimbursement.
CriUc1J1 Local 1
••uflS
.
..
Increasing reliance on CARE fUl')ds for provision of health care for AIDS patients due
to proposed cuts and restrictions in MediCal eligibility.
..
e,
..
Within tl:te EMA there are an estimated 33,000 persons living with HIV. ' ,
Approximately one out of every twenty-five persons are inf.ected with HIV.
High prevalence of co-factors associated with spread ofH'IV, such as mental illness •
substance abuse, and poverty.
..
Highly diverse population that requires a vast array of culturally and linguistically
appropriate accessible HIV care services. 42% of general population speak a primary
language other than English, Disproportionately high incidence of AIDS among
African-Americans. which comprise 15 % of the recent report AIDS cases.
..
High rates of homelessness, immigration and poverty produce high rates of
tuberculosis infection in San Francisco, which has the fourth highest TB rate
nationally
I
EXlJmple, of Approache. to Addrss,ing Speclal,NtHldsand Challenges
.,
Expanded and decentralization AIDS Drug Assistance Program (ADAP) services. 71
neighborhood pharmacies now participate in ADAP,"
,.
Development of centralized housing placement and r~ferr~1 system (CHIPS). CHIPS
is a centrally computerized housing information and referral system that will increase
accessibility and reduce waiting times for housing throughout the EMA.
.
Development of centralized case management registration and referral service
(Reggie). The Reggie system will improve coordination of case management services
and standardize referral information across the EMA by linking all CARE funded
agencies into a centralized client registrationsystem.
,
,
Primary Care Services for home-bound clients. Through CARE funding, a physician
service based at the San Francisco General Hospital's AIDS ward is providing
palliative' care for seriously ill and debilitated home~bound clients,
�THE WHITE HOUSE
WASHINGTON
The Office of National AIDS Policy
and
The Presidential Advisory Council on HIV and AIDS
Invite You to
A special luncheon briermg for philanthropic leadership,
following·up on The White House Conference on HIV and AIDS
featuring a conversation with
National AIDS Policy Director Patricia S. Fleming
Thursday, May 23, 1996
12:00 p.m to 1:30 p.m~
The Palace Hotel
French Parlor Room
Second Floor
·2 New Montgomery Street
R.S.V.P. by May 21 to
Diane Bone, (415) 777-2244
This briefing is co-sponsored by FunderS Concerned AboUl AIDS, the
National AIDS Fund, and is made possible, in pari, by a grant from the
Council ofFashion Designers ofAmerica-Vogue lnitio.tivelNewYorlc City
AIDS Fund of The New Yorlc Community T~. California briefings are made possible
in pari by a contribution from the Henry J. Kaiser Family Foundation.
This luncheon is hosted by. the Levi Strauss Foundation
�THE. WHITE HOUSE
WASHINGTON
The
Offi~
of National AIDS Policy
and
The Presidential Advisory Council o'n HIV and AIDS
Invite You to a
Public Issues Briermg
Friday, May 24, 1996
1:00 p.m. to 3:00 p.m.
San Francisco Department of Public Health
Health Commission Chambers
3rd Floor'
101 Grove Street
Featuring
Patricia S. Fleming
, Director
Office of National AIDS Policy
Carol H. Rasco
Assistant to the President for Domestic Policy
Senior government officials and members of the President's Advisory Council will be on-hand to
participate in workshop briefings with members of the San Francisco/Oakland community' on current
actions related to the epidemic. Participants will take part in in-depth discussions of key issues including:
HIV Prevention - Dr. Helene Gayle, Centers for Disease Control & Prevention
HIV1AIDS Research - Drs. Jack w;m.tesc:arver and Mark Feinberg, NUl Office of AIDS Research
AIDS Housing - Roberta Achtenberg, Department of Housing and Urban Development
AIDS Care (Ryan White and Medicaid) - Dr. Joe O'Neill, Health Resources and Services Administration,
and Jeff Levi, White House Office of National AIDS Policy
AIDS Drug Development & Approval- Dr. David Feigal, Food and Drug Administration·
R.S.V.P. with name and phone number to 415/487-3094
This meeting is CO-SPOl1l!Ored by Fundera Concerned About AIDS and the
National AIDS Fund. and is made possible. in part, by a grant from the
Council of Fashion Designera of America-Vogue Initiative/New York City
.
AIDS Fund of The New York Community Trust. Califomia briefings are made possible
in part by a contribution from the Henry 1. Kaiser Family Poundation.
�SENT BY:Xerox Telecopier 7020
5-22-96 ;11:29AM
2026321096"
94562878;# 2
.Consensus Talking Points on needle exchange:
•
We're deeply ~ncemed about the spread of HIV through contaminated needles.
•
The issue of whetner to provide federal funding for needle exchange programs in
complex and difficult.
'
•
As you know, Congress has set standards for funding such programs. However,
we are .fmancing research into such programs.
•
It's also important to note that dozens of locally and privately funded needle
. exchange programs are underway around the country. As research expands our
knowledge about these programs, it's appropriate fot decisions about such
programs to be made at the local level.
Follow-up questions: What are the Congressional restrictions?
There are two: The HHS appropriation requires the Secretary to certify that such programs
reduce the spread of mv and do not en~ourage drug abuse. ('
The second standard, in the Substance Abuse block grant, is even tougher. , It requires
certification that such programs both reduce the spread of mv and t~uCe drug abuse.
�HIV/AIDS
"Our common goal must ultimately be a cure, a cure for all those who are
living with HIV, and a vaccine to protect all the rest of us from the virus. A
cure and a. vaccine, that must be our first and top priority. "
President Bill Clinton
December 6, 1995
In the 15 years since the discovery of IDV/AIDS in the U:S., more than 500,000 Americans
have been diagnosed with AIDS and more than 300,000 men, women and children have died
. from this disease.. AIDS is the leading cause of death among Americans ages 25 to 44.
Today. as many as 1 million Americans are living with IllV and an estimated 100 Americans
become infected every day. The federal government's early response to this epidemic was.
sharply criticized as insufficient. But President Clinton has committed the nation to a loud,
clear, and consistent war on AIDS.
A RECORD OF ACCOMPLISHMENT:'
•
Created the Office of National AIDS Policy at the White House to coordinate and
direct federal AIDS policy.
•
Increased fwiding for AIDS research, prevention and care by 37% in three years and
sought increases.in FY 1997 that would raise funding by 43% over four years.
•
Increased funding for the Ryan White CARE Act, which provides services to people
living with AIDS, by 112%.
•
Revised eligibility rules for Social Security disability benefits to make it easier for
p~ple with HIV/AIDS to qualifY for support.
•
Enacted legislation strengthening the Office of AIDS Research at the National
. Institutes of Health, providing a stronger focus fo~ research planning and coordination.
•
Accelerated A..ri::>s drug approval. Approval of two new protease iIiliibitor drugs was
accomplished in 72 and 41 days, respectively.
•
Called the first·ever White House Conference on IllV and AIDS, hosting more than
300 experts, activists and caregivers at high..:lev:el discussions with Administration
officials.
.
•
Established the Presidential Advisory Council on IllY arid AIDS to advise the
government on issues related to the national response .to the epidemic.
•
Increased funding for direct housing
assis~ce
to people with AIDS by nearly 40%.
�E X E CUT I V E
OFF ICE
o
F
THE
PRE SID E
21-May-1996 01:19pm
TO:
Carol H. Rasco
FROM:
Jeffrey Levi
AIDS Policy Council
CC:
CC:
CC:
Patsy Fleming
Jeremy D. Bertami
Elizabeth E.Drye
SUBJECT:
Same-sex marriage talking points for SF
,The following are talking points on same-sex marriage that Marsha
and her st f have reviewed. These have NOT been cleared by
Harold Ickes (none have), but Eric Fanning tells me that this is
consistent with everything they have been saying.
o I will not mislead you. The President is personally opposed to
same-sex marriage, as he stated in the 1992 campaign.
o Some in Congress are trying to make this a wedge issue in the
political campaign. We hope cooler heads will prevail. Nothing
is gained by introducing highly emotional rhetoric on serious
social issues.
o
o This is a controvers
social issue on which,there is no
national consensus. There is a lot
educating that needs to be
done on this subject.
o What is different about the internal d~scussions now taking
place is that for the first time open~y gay and lesbian
Administration offic
are part of the internal discussions.
o Marriage has always been -- and ought to be - an issue
regulated at the state level. Our federal system is uniquely
designed to allow testing of new approaches to difficult social
issues.
States, cit
, and the private sector are now
experimenting with different approaches regarding the recognition
of same-sex relationships and how to address discrimination faced
by those in such relationships.
It would be best if Congress let
that process evolve without federal interference.
�MAKIl'lG CALIFORNIA A BETTER
. PLACE TO LIVE AND WORK
e----------------------------~------------America Is Moving In the Right Direction Under President Clinton
• . Stronger Economy. The combined rate of unemployment and inflation is at its 10wesUeveisince 1968.
,
• 8.5 Million New Jobs. The economy has created more than 8.5 million new jobs under President Clinton.
Private sector job growth rate nearly 8 times greater than during previous Administration.
•
Renewed' Growth in Key Industries. After a decade of enonnous job losses in construction, manufacturing
and autos, these industries have .made a remarkable recovery nearly one millioll new jobs combined under .
President Clinton.
'.
_a
.
.
• Deficit Cut in Half. The President's economic plan will cut the deficit for four years in a row' for the first
time since Harry Truman Was 'President -.; the largest reduction in history.
• Keeping Guns Away from Criminals. More than 60,000 fugitives and felons'blocked from buying handgw
because President Clinton fought to pass the Brady Bill.
• Safer Communities. The crime rate is down. violent crime fell 4· percent in 1995 .:. the largest decline in
more than a decade, and the number of murders decreased 8 percent -- one of the largest drops in· three
decades.
.
Stronger Families.'. Teen pregnancy is falling, the poverty rate is decreasing, and the numDer of people on
welfare is .declining.
.
..,
California Is. Moving In The Right Direction Under PresIdent Clinton
• Unemployment Rate in California Has Dropped from 9.7%
• 545,300 New J,obs Added in 38 Months - After
~7,900
~o
7.60/0.
Lost During the Previous 4 Years.
• Consumer Confidence is Up 47%, After Falling During the Previous Administration.
• Crime Is Down. In Los Angeles, the nwnber of robberies reported fell by 8% in the first half of 1995. In SOl
Diego, the reported number of murders dropped by 25% iil the first half of 1995.
.
• SIS,OOOof Reduced Federal Debt for Every FamiJy"of Four in California.. The President's economic plan
is reducing the federal debt for each family of four by about $15,000.
• 2,146,915 Working Families Receive a Tax Cut. The President's expanded Earned Income Tax Credit is
helping 2,146,915 working families make ends meet. .
• 6,006 New Police Officers in California. The President's Crime Bill puts 6,006 new police officers on the
street, strengthens drug courts helping keep adult and juvenile offenders from cycling through the legal systen
.
and helps protect women and children from. domestic violence and sexual offenders.
298,000 Workers Protected by Family and Medical Leave. The Family and Medical Leave Act allows
workers to take up to 12 weeks of unpaid leave for the birth of a child or to care for a sick family member.
This law covers about. 297,914 workers in California.
May 17. 19
�
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Carol Rasco - Meetings, Trips, and Events Series
Creator
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Domestic Policy Council
Carol Rasco
Meetings, Trips, and Events Series
Date
A point or period of time associated with an event in the lifecycle of the resource
1993-1996
Is Part Of
A related resource in which the described resource is physically or logically included.
<a href="http://clinton.presidentiallibraries.us/items/show/48176" target="_blank">Collection Finding Aid for boxes 37-59</a>
<a href="http://clinton.presidentiallibraries.us/items/show/36306" target="_blank">Collection Finding Aid for boxes 60-121</a>
<a href="https://catalog.archives.gov/id/647140" target="_blank">National Archives Catalog Description</a>
Description
An account of the resource
Carol Rasco's Meetings, Trips, and Events Series highlights the topics of discussion for scheduled meetings and events, the persons involved, and information on travel required to attend the meetings or events. Topics include health care reform, disability, employment, education, children and families, and communities. The records include memos, letters, reports, schedules, itineraries, meeting notes, flyers and pamphlets. Folders are arranged chronologically from January 1993 through 1996.
Provenance
A statement of any changes in ownership and custody of the resource since its creation that are significant for its authenticity, integrity, and interpretation. The statement may include a description of any changes successive custodians made to the resource.
Clinton Presidential Records: White House Staff and Office Files
Publisher
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Clinton Presidential Library & Museum
Extent
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1388 folders in 121 boxes
Text
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Paper
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Las Vegas May 22-23 - San Francisco May 23-24, 1996: San Francisco May 23-24 AIDS Conference [3]
Creator
An entity primarily responsible for making the resource
Domestic Policy Council
Carol Rasco
Meetings, Trips, Events Series
Is Part Of
A related resource in which the described resource is physically or logically included.
Box 98
<a href="http://clintonlibrary.gov/assets/Documents/Finding-Aids/Systematic/2010-0198-S-meetings.pdf" target="_blank">Collection Finding Aid</a>
<a href="https://catalog.archives.gov/id/647140" target="_blank">National Archives Catalog Description</a>
Provenance
A statement of any changes in ownership and custody of the resource since its creation that are significant for its authenticity, integrity, and interpretation. The statement may include a description of any changes successive custodians made to the resource.
Clinton Presidential Records: White House Staff and Office Files
Format
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Adobe Acrobat Document
Publisher
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Clinton Presidential Library & Museum
Medium
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Reproduction-Reference
Date Created
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10/12/2011
Source
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2010-0198-Sa-las-vegas-may-22-23-san-francisco-may-23-24-1996-san-francisco-may-23-24-aids-conference-3
647140