Introduction
Project Goals
Phase One
(including literature review)
Phase Two
Since
the AIDS epidemic began, injection
drug use (IDU) has directly and
indirectly accounted for more than
one-third of AIDS cases in the United
States. Of the 42,156 new cases
of AIDS reported in 2000, 11,635
(28%) were IDU-associated. Racial/ethnic
minorities in the U.S. are most
heavily affected by IDU-associated
AIDS. In 2000, IDUs accounted for
26 percent of all AIDS cases among
African American and 31 percent
among Hispanic adults and adolescents,
compared with 19 percent of all
cases among white adults and adolescents.
IDU-associated AIDS accounts for
a larger proportion of cases among
women than among men. Fifty-seven
(57) percent of all AIDS cases reported
among women have been attributed
to injection drug use or sex with
partners who inject drugs, compared
with 31 percent of cases among men.
The use of noninjection drugs also
contributes to the spread of HIV.
Users may trade sex for drugs or
money or engage in behaviors that
put them at risk while under the
influence of drugs.
The
Health Resources and Services Administration's
HIV/AIDS Bureau (HRSA/HAB) recognizes
that substance abuse treatment is
an important component of HIV care
for many people living with HIV
(PLWH). CARE Act funds can be used
for substance abuse treatment and
counseling and many grantees also
provide enabling services that help
ensure access to primary health
care for individuals with a history
of substance abuse. However, little
research has been done to identify
effective substance abuse treatment
modalities for PLWH and performance
standards and best practices for
treatment and care of substance
users with HIV have not been developed.
To address this gap, HRSA/HAB, through
the Special Projects of National
Significance (SPNS) Program, provided
funds to the Health and Disability
Working Group (HDWG) at Boston University's
School of Public Health to establish
the Evaluation and Program Support
Center (EPSC) on Innovative Programs
for HIV-Positive Substance Users.
The EPSC is conducting various activities
that will result in the development
of a set of performance standards
for programs serving substance users
with HIV, a description of best
practices based on existing innovative
programs, and a training program.
PROJECT
GOALS
-
Increase knowledge of innovative
interventions for HIV-infected
substance users.
- Increase
understanding of interventions
that assist HIV-infected substance
users in obtaining primary health
care, substance abuse treatment,
and supportive services.
- Develop
a set of guiding principles for
use by HIV medical care, substance
abuse treatment, care coordination
and outreach programs.
- Provide
information about evaluation and
training to assist HRSA/HAB in
planning for future activities.
PHASE
ONE
The
first phase of the project included
the following activities:
- Review
of published and unpublished literature;
- Surveys
of CARE Act-funded grantees and
HIV-infected substance users;
- Site
visits to 12 innovative programs;
and
- Development
of a set of guiding principles.
Literature
Review
The
literature review provides a thorough
examination of existing literature
related to HIV-infected substance
users. Described are:
- HIV/AIDS
epidemiology among substance users
in the United States;
- Historical
evolution of the service delivery
systems for substance abuse and
HIV medical care;
- Performance
standards for HIV/AIDS primary
care, substance abuse treatment,
and support services;
- Barriers
to providing substance abuse treatment
to PLWH; and
- Innovative
programs and interventions that
link substance abuse treatment
and HIV primary care.
The
literature review also discusses
the needs of specific populations
such as people of color, men who
have sex with men, women, homeless
individuals, and people living in
rural areas and a discussion of
abstinence-only and harm reduction
substance abuse programs is included.
Surveys
The
EPSC team surveyed more than 400
CARE Act-funded grantees and 100
providers funded by other sources.
Interviews were conducted with 40
HIV-infected substance users and
50 key informants.
Title
I and Title II. Forty-three Title
I grantees (86%) responded to the
survey. Of these, 88 percent funded
substance abuse treatment at 197
agencies. More than half of the
grantees (60%) use Title I funds
to promote substance abuse treatment
programs that target underserved
populations (African Americans [44%],
women [42%], Latinos [33%], women
and their children [28%], incarcerated
or recently released [28%], gay/lesbian
[26%], homeless [23%], and adolescents
[16%]). For the programs targeting
underserved populations, the largest
service category is outpatient counseling,
followed by detoxification, residential
treatment programs, outreach, support
services, peer support, methadone
maintenance, day treatment, acupuncture
and inpatient treatment.
Forty-seven
Title II grantees (87%) responded.
Of these, 38 percent funded substance
abuse treatment at 29 agencies.
Eight states use Title II funds
to support substance abuse treatment
programs that target underserved
populations. Seven states (15%)
funded programs targeting women
and four states (9%) funded programs
targeting women and children. Incarcerated/recently
released individuals, African Americans,
adolescents, Latinos, other minority
populations, homeless, and the mentally
ill were also targeted as special
populations. The largest service
category among programs for special
populations is outpatient counseling
followed by residential treatment
and detoxification. Other services
provided include outreach, peer
support and methadone maintenance.
Service
Type |
Title
I Grantees Providing Service |
Title
II Grantees Providing Service |
Acupuncture
Detoxification |
12% |
4% |
Acute
Detoxification |
21% |
9% |
Inpatient
Treatment |
14% |
2% |
Methadone
Treatment/LAAM |
28% |
13% |
Outpatient
Counseling |
75% |
21% |
Residential
Treatment |
35% |
9% |
Other
(collateral, support services)
|
19% |
11% |
One
quarter of Title I grantees report
funding some form of harm reduction
and 15 percent of Title II grantees
funded harm reduction activities.
The most commonly reported included
pre-treatment counseling, outreach
and education, and prevention case
management. Some grantees included
methadone maintenance programs in
their description of harm reduction
programs.
The
most common systemic barriers to
care identified by Title I and Title
II grantees are: lack of housing
options; too few residential programs,
too few detoxification programs/beds;
lack of transportation; and the
lack or inadequacy of insurance
coverage for substance abuse treatment.
Programmatic barriers identified
include: women with children are
not supported in programs; harm
reduction/recovery readiness services
are not provided; substance abuse
treatment providers need more HIV
training; HIV-infected substance
users fall through the cracks in
the service system; and the lack
of outreach to bring people into
care.
Common
weaknesses identified by Title II
grantees in the service delivery
system of their state include insufficient
treatment capacity, difficulty obtaining
any services in rural areas, program
siting problems, and the lack of
different options such as residential
care or detoxification. Strengths
include comprehensive systems of
care, integration of HIV medical
care and substance abuse treatment,
and the use of Title II funds to
provide wrap-around services for
HIV-infected substance users.
Title
III, IV and SPNS Grantees. Surveys
were returned by 165 Title III,
Title IV and SPNS grantees, representing
58 percent of the sample. Programs
varied in the percent of their HIV
population that were substance users.
Some programs reported that less
than five percent of clients were
substance users while others reported
substance abuse by more than 75
percent of their clients. Of the
respondents, 49 percent reported
providing substance abuse treatment,
although many of these agencies
reported only providing counseling
services and this often was not
provided by certified or licensed
addictions counselors. All of the
medical programs and almost three
quarters of the other programs provided
services to assist HIV-infected
substance users to access care such
as drop in services, extended hours,
or home/shelter-based services.
In addition, many respondents provided
services designed to engage and
retain people in care, such as street
outreach, mobile vans, peer support
services and harm reduction programs.
Of the programs providing substance
abuse treatment services, 90 percent
took a harm reduction approach to
treatment. Of the programs that
did not provide on-site substance
abuse treatment, 65 percent stated
that they had a formal relationship
with a substance abuse treatment
program that offered a harm reduction
approach. A substantial number of
respondents operated programs that
integrate medical, mental health
and substance abuse treatment services.
Innovative
and/or effective program features
identified by respondents include:
support services such as clothing,
food, childcare and transportation;
money management training; housing
advocacy; adherence support; recreational
activities; complimentary therapies
(acupuncture and massage); strategies
to provide services in rural or
geographically distant areas; domestic
violence education, counseling,
and services; and prison linkages.
Major
barriers to care identified by respondents
include: difficulty retaining people
in substance abuse treatment; lack
of substance abuse treatment slots;
difficulty retaining substance users
in medical care; and lack of housing.
Other barriers identified included:
duration of substance abuse treatment
is too short; lack of treatment
programs for women and children;
medical and substance abuse treatment
programs not co-located; lack of
harm reduction programs, fear of
HIV disclosure in substance abuse
treatment programs; lack of insurance
coverage; limited transportation;
clients get lost between referrals;
lack of primary care provider expertise
in substance abuse; substance abuse
treatment providers lack HIV expertise;
lack of outreach; substance abuse
treatment providers are judgmental;
difficulty recruiting/retaining
bilingual staff; primary care providers
are judgmental toward substance
users; and substance abuse treatment
providers lack cultural sensitivity.
Gaps
in services identified by respondents
include: lack or resources for staff
training in HIV, substance abuse,
and cultural issues; lack of time
for case conferencing; home visits;
administrative and clinical effort
needed to integrate health care
with addiction and mental health
services; services and staff to
support adherence to HIV treatment;
services and staff to assess readiness
for substance abuse treatment; availability
of substance abuse treatment programs
that accept and are responsive to
PLWH; and financial support for
substance abuse treatment integration
with HIV medical care.
Consumers.
Twenty-four (24) HIV-infected
substance users in Boston, Baltimore,
Atlanta and San Francisco were interviewed
in the spring of 2000.
Demographic
Characteristics and Drug Use/Treatment
History
- 15%
male, 8% female, 1 transgender
- Mean
age was 37.2 (range from
27 to 49)
- 17%
African American, 3% Caucasian,
3% Latino/a
- 71%
heterosexual, 13% homosexual,
4% bisexual (13% did not
respond)
- 63%
have some type of health
coverage (Medicaid was the
most common)
- Average
age at first use was 18.6
years old and more than
half began at age 16 or
younger.
- Heroin
was used most frequently
(46%), followed by crack
and alcohol (29% each),
cocaine (21%) and multiple
substances (25%).
- Median
number of times respondents
had been in substance treatment
was 5.5, with a range from
1 to 52 treatment episodes.
- 83%
of respondents were in recovery
at the time of the interview.
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For
their most recent substance abuse
treatment experience, respondents
reported various modalities and
many reported multiple modalities.
The most frequently reported modalities
were self-help groups, detoxification,
group counseling, individual counseling
and residential treatment. Forty-two
(42) percent reported preferring
substance abuse treatment programs
that were specific to their gender,
race/ethnicity, sexual orientation,
or HIV status.
Only
13 percent of respondents reported
being unable to obtain treatment
when they sought it. Barriers included
long waits for treatment, stigma
(negative attitudes about HIV by
substance abuse treatment staff),
comfort and readiness for treatment,
and confidentiality. Respondents
also identified factors that supported
their recovery efforts such as spirituality,
fear of dying young, not wanting
to hurt one's self or others, honesty,
and being in a program where they
felt comfortable.
The
majority of respondents were seeing
a doctor or nurse for HIV care at
the time of the interview and 75
percent reported taking HIV-related
medications. When asked what they
liked about their care, responses
included health care providers that
care about and understand them and
providers that are knowledgeable
about HIV and can explain their
treatment. Seventy-five (75) percent
reported experiencing some type
of barrier to care. Not wanting
people to know their HIV status
was the most frequently reported
barrier, followed by judgmental
attitudes, medical care not being
a priority, not wanting their health
care provider to know about their
substance abuse, long waits for
appointments, and getting lost in
the referral process. Eighty-eight
(88) percent of respondents reported
that they had no need for other
services. Those who did need other
services reported that mental health
services, eye care and housing were
difficult to obtain.
Key
Informants. Fifty (50) key
informants, interviewed between
January and April 2000, provided
information about key components
of program success and barriers
to care.
Components
of program success identified (in
order of importance) include:
- Referral
to support services (including
transportation, childcare, employment
assistance, legal assistance,
food or meals, and housing assistance);
- Cultural
sensitivity/population-specific
services;
- Integrated
service delivery models;
- Staff
skills, sensitivity and attitudes;
- Use
of harm reduction philosophy and
tolerance for relapse;
- Availability
of case management;
- Using
outreach to keep people in care;
- Family-focused
treatment that includes children
along with their mothers;
- Using
ex-addicts as counselors; and
- Being
a client-direct and empowered
model of care.
Barriers
to care identified include:
- Limited
funding (includes lack of insurance
and shortage of treatment slots);
- Staffing
concerns (staff retention, stress,
role definition, training issues,
and negative staff attitudes toward
HIV-infected substance users);
- Lack
of coordination among programs,
particularly those providing HIV
medical care and those providing
substance abuse treatment;
- Client
behavior (manipulation of the
system, difficulties faced when
some members of their peer group
return to active drug use, and
missed appointments);
- Programs
that do not accept the reality
of substance abuse (do not incorporate
harm reduction treatment models
or are not relapse tolerant);
- Stigmas
associated with both HIV and substance
abuse (includes the difficulty
of siting facilities within communities);
- Unique
challenges faced by women and
racial/ethnic minorities;
- Lack
of adequate housing;
- Difficulty
of retaining people in care; and
- Lack
of community-based and street
outreach.
Site
Visits
Based
on the results of the surveys, the
ESPC developed a set of criteria
for defining innovative models of
care and identified over 50 programs
that met the criteria. Twelve programs
were selected, following in-depth
telephone interviews, and site visits
were conducted that explored various
program models, interventions for
different populations, specialized
case management systems, and linkages
between primary medical care, substance
abuse treatment and support services.
Because each program that was visited
was unique, the findings of the
site visits address a broad range
of issues. These include outreach
and engagement, points of entry,
harm reduction approaches, cultural
competence, consumer involvement,
adherence, retention in care, housing
and shelter, working with other
agencies, and quality improvement.
Guiding
Principles
Guiding
principles were developed for primary
HIV care, substance abuse treatment,
outreach services and care coordination.
They were developed with the help
of an advisory committee using the
information gathered in the literature
search, surveys, and case studies.
These principles, which represent
the first comprehensive set of standards
of care for HIV-infected substance
users, are designed to assist funders,
purchasers of service, and service
providers in improving the delivery
of services to this population.
Standards
of Care: Title I Grantees
Fifty-eight
(58) percent of the Title
I grantees responding to the
survey reported that they
have standards of care for
substance abuse treatment.
While 70 percent have standards
of care for HIV medical care,
only 14 percent report that
the HIV medical care standards
address issues specific to
substance abuse. Fourteen
(14) percent of grantees have
case management standards
that address substance abuse
issues and nine percent have
supported housing standards
addressing substance abuse
issues.
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The
guiding principles are based on
three themes:
- Both
substance abuse and HIV disease
are preventable and treatable;
- All
HIV-infected substance users should
receive the same level and high
quality of care as any other individuals
accessing health care and/or substance
abuse treatment; and
- Services
should be provided in a manner
that encourages engagement and
retention in care.
The
principles are organized in general
categories. These include: integrated
services; care coordination; assessment;
referral; staff education and support;
consumer education; quality improvement;
confidentiality; cultural sensitivity
and competence; and consumer involvement.
The document first describes the
general guiding principles applicable
to all facets of care and then discusses
more specific guidelines for primary
care, substance abuse treatment,
care coordination, and outreach.
Key
Informants on Performance
Standards
|
- Confusion
between performance standards,
performance measures, and
outcomes indicate a need
for more information on
the concept of performance
standards in general and
the need to develop standards
specific to HIV-infected
substance users.
- Key
informants familiar with
programs based in outpatient
medical settings were most
likely to identify performance
standards (73 percent).
Only 40 percent of those
familiar with case management
programs and 33 percent
of those familiar with substance
abuse treatment programs
were aware of performance
standards relevant to HIV-infected
substance users.
- Areas
for which performance standards
might be developed include:
how long a person remains
in care; availability of
primary care providers knowledgeable
about HIV; access to or
referral to support services;
linkage to medical services
for HIV for people in substance
abuse treatment programs;
and standards for consistency,
structure, and guided confrontation
in substance abuse treatment.
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PHASE
II
Based on the knowledge gained from
Phase One, the EPSC developed and
pilot tested a training program,
using a train-the-trainer approach,
that includes a training curriculum
for providers of services to HIV-infected
substance users. A national training
program was conducted in January
2003 with nearly 80 doctors, nurses,
psychologists, social workers, therapists,
outreach workers, and substance
abuse professionals from six different
regions. Participants will conduct
additional trainings in their regions
in spring/summer 2003. The curriculum
will be translated into Spanish
and pilot tested in Puerto Rico.
Training
Program Objectives
|
-
Provide training to substance
abuse treatment providers,
HIV medical care providers,
and HIV support service
providers that enhances
their capability to serve
HIV-infected substance
users.
-
Encourage
Title I and II grantees
to collaborate with State
and local agencies responsible
for the funding of substance
abuse treatment services
in order to promote policies
and funding initiatives
that support collaboration
and service integration
at the provider level.
-
Provide
specific assistance to
programs in evaluating
their performance in serving
HIV-infected substance
users, and using this
information to improve
performance.
-
Promote
the capacity to sustain
this level of technical
assistance by engaging
AETCs and local experts
in curriculum development
and a train-the-trainer
program
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