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Innovative Programs for HIV Positive Substance Users

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Background  

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.

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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.ice Type 

Service TypeTitle I Grantees Providing ServiceService Title II Grantees Providing Service
Acupuncture Detoxification12%4%
Acute Detoxification21%9%
Inpatient Treatment14%2%
Methadone Treatment/LAAM28%13%
Outpatient Counseling75%21%
Residential Treatment35%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, child care 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.

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, child care, 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.

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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Part F - SPNS Resources

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The SPNS program began with some of the first Federal grants to target adolescents and women living with HIV, and over the years, initiatives have been developed to reflect the evolution of the epidemic and the health care arena.



Part F - SPNS Products and Publications

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