Because Health Care is a Right, Not a Privilege

HIV/AIDS AND HOMELESSNESS:

Recommendations for Clinical Practice and Public Policy - November 1999

This document also available in PDF 264KB.

Index:

  1. Executive Summary

  2. Introduction

  3. HIV Prevention

  4. Access to Care

  5. General HIV Care

  6. Antiretroviral Treatment

  7. Adherence

  8. Research

Go to Table of Contents


HIV/AIDS & HOMELESSNESS

Recommendations for Clinical Practice and Public Policy

Developed for The Bureau of Primary Health Care and The HIV/AIDS Bureau Health Resources and Services Administration

by

John Song, M.D., M.P.H., M.A.T.
November 1999


i

Financial and other support for the development and distribution of this paper were provided by the Bureau of Primary Health Care and the HIV/AIDS Bureau, Health Resources Services Administration, United States Department of Health and Human Services, to the National Health Care for the Homeless Council, Inc., and its subsidiary, the Health Care for the Homeless Clinicians' Network.

 

The views presented in this paper are those of the author and do not necessarily represent those of the United States government or of the National Health Care for the Homeless Council. Nothing in this paper should be construed as providing authoritative guidelines for the practice of medicine or for treatment of medical conditions.

 

This paper may be reproduced in whole or in part with appropriate recognition to the author, John Y. Song, MD, and the publisher, the Health Care for the Homeless Clinicians' Network, National Health Care for the Homeless Council, Inc.

 

Second Printing

February, 2000

 

National Health Care for the Homeless Council

Health Care for the Homeless Clinicians' Network

Post Office Box 60427

Nashville TN 37206-0427

Phone 615/226-2292

Fax 615/226-1656

council@nhchc.org or network@nhchc.org

http://www.nhchc.org

 


ii

PREFACE

 

HIV/AIDS and homelessness are twin plagues that take a staggering toll. Each condition complicates

the other, and lives hang in the balance as health care providers and their patients try to sort through

the complications and assure critical services. This paper is dedicated to the improvement of

HIV/AIDS care for homeless people, and to the end of both of these plagues.

 

In considering HIV/AIDS and homelessness together, this paper explores largely uncharted territory.

Its principle author, Dr. John Y. Song, brought to the task his insight from treating HIV-infected people

as a volunteer with Health Care for the Homeless, Inc., of Maryland, and writing skills honed in

part through his experience as a leader of a homeless writers' group in Baltimore. He also brought a

kind and generous heart. We are grateful that Dr. Song chose to devote part of his dual fellowship in

General Internal Medicine and in Ethics and Public Policy to this project. The Johns Hopkins School

of Medicine and Georgetown University deserve appreciation for the support they provided for his

endeavor.

 

In defining the parameters of the paper, Dr. Song consulted with an HIV/AIDS Advisory Committee

of the Health Care for the Homeless Clinicians' Network, whose members also reviewed various

drafts as the work progressed. Advisory Committee members are listed in Appendix IV. Brenda J.

Proffitt, MHA, ably staffed and guided the Committee in her role as Project Director for the HCH

Clinicians' Network.

 

A Symposium on HIV/AIDS and Homelessness - convened by two agencies of the Health Resources

Services Administration, the Bureau of Primary Health Care and the HIV/AIDS Bureau -

brought together researchers, HIV-infected homeless people, health care providers, HIV/AIDS specialists

and homeless advocates to contribute further advice to the project. Many of the recommendations

in this paper emerged from that very productive Symposium. Participants are listed in

Appendix V.

 

Special thanks is due to Jean L. Hochron, MPH, and Lori S. Marks, BA, of the Bureau of Primary

Health Care's Division of Programs for Special Populations, for understanding the need for this publication

and for guiding its development. Equally valuable were the support and resources provided by

HRSA's HIV/AIDS Bureau staff, particularly Magda L. Barini-Garcia, MD, MPH, and Kim Y. Evans,

MHS. Patricia A. Post, MPA, Communications Manager for the National Health Care for the

Homeless Council, edited this paper into its final form with remarkable skill. Carlos Velez also provided

editorial assistance.

 

Thank you to all who contributed to the work represented here, and to the many others who struggle

against HIV/AIDS and homelessness each day.

 

John N. Lozier, MSSW

Executive Director

National Health Care for the Homeless Council

 


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TABLE OF CONTENTS

I. EXECUTIVE SUMMARY

II. INTRODUCTION

III. HIV PREVENTION

A. Background

1. Substance Abuse Treatment

2. Mental Health Care

3. Targeted Prevention

4. Harm Reduction

B. Recommendations

1. Clinical Recommendations

2. Public Policy Recommendations

IV. ACCESS TO CARE

A. Background

1. Barriers to Health Care

2. HIV Counseling and Testing

3. Continuity of Care

4. Appropriate and Proficient Care

B. Recommendations

1. Clinical Recommendations

2. Public Policy Recommendations

V. GENERAL HIV CARE

A. Background

1. Immunizations and Testing

2. Tuberculosis

3. Homeless Women

4. Rural Areas

B. Recommendations

1. Clinical Recommendations

2. Public Policy Recommendations


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VI. ANTIRETROVIRAL TREATMENT

A. Background

1. Treatment Failure

2. Resistance

3. Combinations without Protease Inhibitors

4. Access

B. Recommendations

1. Clinical Recommendations

2. Public Policy Recommendations

VII. ADHERENCE

A. Background

1. Adherence Assessment

2. Reasons for Non-Adherence

3. Maximizing Adherence

4. Public Health Considerations

B. Recommendations

1. Clinical Recommendations

2. Public Policy Recommendations

VIII. RESEARCH

A. Background

1. Needs Assessment

2. Priorities

B. Recommendations

1. Epidemiology

2. Behavioral Research

3. Clinical Research

4. Policy Research

Appendix I - REFERENCES

Appendix II - CASE HISTORIES

Appendix III - GLOSSARY

Appendix IV - HCH CLINICIANS' NETWORK HIV/AIDS ADVISORY COMMITTEE

Appendix V - SYMPOSIUM ON HIV/AIDS AND HOMELESSNESS PARTICIPANTS


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I. EXECUTIVE SUMMARY

This document is intended for clinicians and other service providers, health care policy makers and

advocates. It was developed by the National Health Care for the Homeless Council in collaboration

with the Bureaus of Primary Health Care and HIV/AIDS, Health Resources and Services Administration,

Department of Health and Human Services, in response to the following concerns:

  • The prevalence of HIV/AIDS is dramatically higher among homeless people than in the general population.

  • Homelessness and HIV/AIDS are widespread and intersecting problems that occur in both urban and rural populations throughout the United States.

  • Conditions associated with homelessness make HIV prevention and control especially difficult.

  • Limited access to medical care severely restricts HIV/AIDS prevention, risk reduction and treatment for homeless persons.

  • Adherence to complex HIV treatment regimens presents special challenges for homeless patients and their caregivers.

Of the 400,000 to 600,000 individuals currently estimated to be living with AIDS in the United

States (CDC), approximately one-third to one-half are either homeless or at imminent risk of

homelessness (Goldfinger, as cited in ACLU). Median prevalence rates of the human immunodeficiency

virus (HIV) that causes AIDS have been found to be at least three times higher -3.4% versus

under 1% - in homeless populations than in the general population (Allen). Even higher

prevalence rates (8.5% - 62%) have been reported in various homeless subpopulations, including

adults with severe mental illness (Zolopa; Paris; Susser; Fournier; Torres).

 

Neither HIV nor homelessness is limited to urban populations. Both problems are widespread, intersecting

in rural and urban areas across the United States. Although the prevalence of HIV is likely

to be highest in large metropolitan areas, there is evidence that the AIDS case rate is increasing

more in non-metropolitan areas (CDC). Among persons known to be at highest risk for HIV infection,

including intravenous drug users and persons engaging in high-risk sexual behaviors, those

without a stable home are even more likely to be HIV-positive, wherever they may live (Wiebel;

Smereck).

 

Although new medications have reduced the number of HIV cases that progress to full-blown

AIDS, antiretroviral therapy is not universally available. Despite their disproportionately high risk

for HIV infection and transmission, homeless individuals have limited access to preventive and

therapeutic HIV/AIDS care. Moreover, their limited access to comprehensive health care delays the

identification of HIV, accelerates the onset of AIDS, and impedes the resolution of behavioral disorders

that interfere with HIV risk reduction and treatment. Restricted access to health care is also

a contributing factor in the increased prevalence of opportunistic infections and other medical conditions,

including tuberculosis, that are more common among homeless people than among other

groups.

 


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To address these critical public health issues, access to health care for homeless individuals must be

increased through expanded health coverage. Better coordination of care must be achieved among

providers of clinical and social services, which must include behavioral health care and housing. In

addition, continuity of care must be improved, especially following admission to and discharge from

inpatient and criminal justice facilities.

 

HIV/AIDS Prevention

 

Preventive measures commonly used in other populations at increased risk for HIV infection are

often unavailable to homeless men and women. Although homeless shelters, food kitchens and

clinics are ideal settings for primary HIV prevention, insufficient resources limit the health education

and risk reduction interventions these organizations can provide.

 

Nor are HIV testing and counseling generally available to homeless individuals, who experience

unique barriers even when these services are available. Travel to clinics for testing or to obtain test

results is often difficult for people experiencing homelessness, and mobile testing is not provided

with sufficient frequency. Homeless persons testing positive for HIV who seek care are often unable

to obtain referrals to HIV/AIDS specialty clinics. Compounding these barriers is the lack of routine

screening of homeless individuals for sexually transmitted disease, psychoactive substance abuse and

mental illness. Early identification and treatment of these conditions would assist in HIV and AIDS

prevention.

 

A number of strategies shown to reduce HIV risks in the homeless population, including substance

abuse treatment, needle exchange programs, safe injection education and the provision of condoms,

are not routinely available. Linkages among primary care, HIV treatment and behavioral health

services, though effective where they exist, are also limited. Similarly, some clinical and social service

providers lack sufficient training to engage homeless clients' active participation in HIV risk reduction.

To address these limitations, policy makers, community planning groups and health care providers

must assure that HIV prevention programs are made available to all homeless individuals, and that

preventive interventions are culturally, developmentally and linguistically appropriate for the individuals

they are intended to influence. In addition, harm reduction initiatives should be adequately

funded to reduce known risks of HIV infection for homeless individuals. Finally, treatment for HIV,

substance abuse and mental illness should be linked to primary care services and coordinated by experienced homeless providers.

 

Access to Comprehensive Health Care

 

Although many Americans have limited access to comprehensive and well-coordinated health care,

individuals who experience homelessness are particularly vulnerable to increased morbidity and

mortality when excluded from integrated medical and behavioral health services. Among the most

significant health care access barriers are lack of health insurance and financial resources, difficulty

managing entitlement processes, lack of transportation, and a limited number of culturally and linguistically

competent caregivers who are willing and able to serve poor and homeless people. Because

subsistence needs take most of their time and energy, most homeless people relegate preventive

and primary health care to a lower priority in their lives. Lack of provider flexibility (e.g., office

hours limited to times when homeless patients are unable to keep appointments) makes needed care

even harder to obtain.

 


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Influenza and other respiratory infections, diabetes, anemia and liver disease are among the conditions

that tend to be more serious and complex for homeless individuals, primarily because they do

not obtain care early. Lack of adequate food and financial resources exacerbates medical problems.

All medical conditions are made more complex by HIV, which disrupts the body's natural response

to disease. Thus it is essential for health care providers to screen and treat homeless clients for a

wide variety of common medical conditions.

 

Access to HIV Care

 

While traditional homeless service providers and other community-based clinics can provide necessary

primary care services, they often lack the resources and expertise to provide sufficient HIV care.

Homeless individuals who receive health care services from safety net providers may have limited

access to HIV testing and specialty care. Restricted access to mental health and addictions treatment

can further delay and compromise the efficacy of HIV therapy.

 

Treatment should be made available for all conditions that impact on HIV care, including other

sexually transmitted diseases, hepatitis, substance abuse and mental illness. Goods and resources

that make care more effective, such as food, shelter and bathroom facilities, should be provided

where necessary as an integral part of HIV care.

 

Prophylactic antibiotic therapy for opportunistic infections (OIs) is relatively inexpensive and can

reduce morbidity and mortality in HIV-infected persons. Treatment of these conditions can also

prepare homeless clients to adhere to more complex treatment regimens. Nevertheless, not all

homeless people who need OI prophylaxis receive it. Whether clinicians are not offering homeless

clients treatment, or whether they are refusing it (or both) is unclear. In any case, clinicians should

be persistent and creative in their efforts to make OI prophylaxis available to homeless clients, and

encourage adherence to antibiotic therapy.

 

Antiretroviral Therapy

 

During the last several years, biomedical research has produced a variety of antiretroviral therapeutic

agents that have proven effective in suppressing HIV in infected persons. Tests used to measure

HIV progression have also improved substantially with the calculation of HIV viral loads in blood

plasma. The level of HIV in the blood can be seen as a predictor of disease progression. Combinations

of various antiretroviral agents, when taken as prescribed, can reduce viral loads to undetectable

levels in relatively short periods of time.

 

To be successful, antiretroviral therapy requires diligent patient adherence to complicated treatment

regimens. Patients may have to take more than twenty pills in several doses daily, following strict

dietary instructions. In addition, some individuals experience severe side effects. Antiretroviral

therapy does not work for everyone, especially for individuals who do not take their medications as

prescribed. They risk treatment failure and the development of drug resistance. When a particular

treatment fails, the patient may not be able to resume it, as the medication may no longer be effective

in suppressing the virus in that individual. In some instances, failure of a particular medication

may mean that other medications are not effective either, due to a phenomenon called crossresistance.

 


4

Prescribing antiretroviral therapy requires a detailed assessment of the individual's health status and

lifestyle to assure that medications can be taken as prescribed, with adjustments in therapy where

possible to maximize adherence. Especially promising for some individuals are simpler proteasesparing

treatment regimens that achieve viral suppression while reducing the risk of drug resistance.

 

An individual's viral load must be monitored closely in case it does not respond to treatment or rebounds

after decreasing initially. If a patient fails a particular drug combination, other combinations

may be prescribed.

 

Because antiretroviral therapy is expensive, it is not always available to individuals who are poor and

homeless. Although antiretroviral medications are becoming more affordable through government

programs and charitable sources, not all homeless individuals have access to them or to clinicians

who are familiar with antiretroviral therapy. Additional steps should be taken to make antiretroviral

therapy more accessible to homeless persons and to provide them and their clinical providers with

the education and resources needed to make treatment successful.

 

Adherence

 

It is generally believed that failure of antiretroviral therapy is most often due to lack of patient adherence

to the prescribed treatment regimen. Prior to prescribing antiretroviral medications, physicians

determine whether a particular individual can or will adhere to the therapy. Many homeless

persons are excluded from treatment because they lack stability, housing, regular access to food,

water and other resources needed to ensure adherence to antiretroviral therapy. In addition, substance

abuse disorders, which affect significant numbers of homeless individuals, are generally considered

to be grounds for withholding antiretroviral therapy because they can undermine patients'

capacity to adhere reliably to any treatment regimen.

 

Nevertheless, there are no absolute contraindications to antiretroviral therapy. While it is important

to prescribe complex treatment regimens, where appropriate, to individuals who can adhere to

them, it is also essential to assist others to obtain the most effective alternative treatment available.

Clinicians and service providers should make an in-depth assessment of the impediments their patients

may face in adhering to therapy. Rather than using the assessment as a basis for denial of

treatment, physicians should respond to identified barriers by working with their patients to overcome

them or prescribe regimens that are easier to follow. Where possible, clinicians should prescribe

medications that can suppress HIV in simple combinations - a rational strategy for all patients,

whether or not they have stable housing.

 

Patient adherence can also be facilitated through co-management of care by clinicians, non-clinical

service providers and other individuals who are in regular contact with homeless individuals. With

the exception of some case managers, non-clinical service providers tend to be poorly informed

about antiretroviral therapy. It is essential, therefore, that all homeless service providers obtain basic

information about antiretroviral therapy, including how it works and how to manage side effects.

In this way, a variety of trained service providers and support personnel can assist homeless patients

in maintaining appropriate adherence to HIV treatment.

 


5

Research

 

The research literature on HIV/AIDS and homelessness, though sparse, clearly identifies barriers to

prevention, health care access and treatment faced by homeless people living with HIV, and points

to a number of areas where more investigation is needed. More targeted studies employing standardized

methodologies are needed to form a scientific basis for the development of successful HIV/AIDS prevention and treatment strategies for people who lack stable housing.

 

Such research is warranted by the preliminary evidence, reported here, that HIV/AIDS has a disproportionate effect on particular homeless subpopulations, and that HIV-infected, housed persons

are at increased risk of becoming homeless. Failure to measure the scope of HIV/AIDS within the

homeless population and to develop effective prevention and treatment strategies is likely to exacerbate

the serious public health problem which the human immunodeficiency virus and its devastating

sequelae already present.

 

Epidemiological studies are needed to better characterize the extent of HIV/AIDS among homeless

people and the extent of homelessness among persons with HIV/AIDS. These include focused

studies on homeless subpopulations for whom HIV prevention and care are known to be especially

problematic -e.g., rural populations, homeless women and transgendered individuals. Behavioral

research is required to develop successful strategies for decreasing HIV transmission among homeless

persons, and to identify individual characteristics that may increase treatment adherence.

 

Clinical research is needed to measure the impact of co-morbidities and nutritional deficiences on

HIV/AIDS progression, to quantify immunization rates and determine outcomes of antiretroviral

therapy in the homeless population. Finally, policy research is needed to document the impact of

health coverage on HIV-infected homeless persons' health and access to care, and to develop strategies

to increase access to comprehensive health care for all homeless people.

 


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II. INTRODUCTION

 

L. T. started antiretroviral medications in 1997, taking them for six months with diligence.

During that time, he was housed in a single residence hotel. When he became

homeless again, however, he told me that he knew that he would not be able to take

his medications as prescribed, and he did not want to take them for fear of resistance.

For the last year, L. T. has been homeless and not taking medication. His CD4 count

fell to 250 and his viral load climbed to over 300,000. He is aware that he may be in

trouble medically.

- Barry Zevin, M.D., San Francisco

 

Between 1981 and 1999, the United States Public Health Service reported 688,200 cases of acquired

immunodeficiency syndrome (AIDS). Currently, 400,000 - 600,000 U.S. residents are estimated

to be living with the human immunodeficiency virus (HIV) that causes AIDS, and about

40,000 new cases of HIV are reported each year (CDC). An estimated one-third to one-half of people

living with AIDS in the United States are either homeless or at imminent risk of homelessness

(Goldfinger, as cited in ACLU).

 

A large, multi-site housing needs assessment survey found that 41% of respondents with HIV/AIDS

had been homeless sometime in their lives (Lieberman), and local needs assessments from Los Angeles

and Philadelphia portray similar housing instability among those with HIV/AIDS (Low;

Aquaviva). Given that homeless people in general are less likely to be counted (Link) and are less

likely to be tested for HIV than housed individuals (Rockwell), these figures probably underestimate

the scope of the problem.

 

The prevalence of HIV infection in homeless populations studied is at least three times higher than

in the general population. A multi-site study tracking the spread of HIV in 16 U.S. cities between

1989 and 1992 reported a median HIV seroprevalence of 3.4% among homeless adults, compared to

less than 1% in the general population (Allen). Local studies conducted during the 1990s in urban

areas with high HIV prevalence rates have reported even higher rates of HIV infection in homeless

subgroups, ranging from 8.5% to 62% (Zolopa; Paris; Susser; Fournier; Torres). Although the range

is broad because of different study protocols, locales, subpopulations and definitions of homelessness,

these figures are significantly higher than the estimated prevalence in the general population.

 

Among persons known to be at highest risk for HIV infection - intravenous drug users and persons

engaging in high-risk sexual behaviors - those who do not have a stable home are even more likely

to be HIV-positive (Wiebel; Smereck). A 1995 study found that 69% of homeless adults surveyed

were at risk for HIV infection from unprotected sex with multiple partners, injection drug use

(IDU), sex with IDU partners, or exchanging unprotected sex for money or drugs (St. Lawrence;

ACLU). Homeless persons with severe mental illness and/or chemical dependencies are especially

vulnerable to the disease because of their impaired capacity to learn and practice risk reduction behaviors

(Susser).

 

Homeless people have alarmingly high HIV infection rates for a variety of reasons, including engagement

in high-risk behaviors and the lack of resources to prevent HIV transmission. For those

already infected, HIV antiretroviral therapy (ART) is often delayed or never begun. Even when initiated,

treatment regimens are so complex that they pose adherence difficulties that may result in

the development of drug-resistant strains of the virus. Lack of health insurance, transportation,

 


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housing and other subsistence needs make health care extremely difficult for homeless individuals to

obtain, resulting in poorer health and diminished capacity to resolve problems that led to their

homelessness in the first place. When these problems are compounded by HIV/AIDS, they are beyond

the capacity of homeless individuals to solve alone.

 

In response to these issues, the National Health Care for the Homeless Council initiated a project in

1998 to gather more detailed information about HIV and homelessness in the United States. Intermediate

goals were to explore problems encountered by clinicians serving homeless people who are

engaged in HIV prevention and treatment, and to derive from their experience recommendations

for clinical practice and public policy. The ultimate goal of this project is to improve HIV prevention

and care for all people who are homeless.

 

John Song, M.D., M.P.H., M.A.T., volunteered to spearhead this effort while completing dual fellowships

in General Internal Medicine at The Johns Hopkins University School of Medicine, Baltimore,

Maryland, and in Ethics and Public Policy at Georgetown University, Washington, DC. Dr.

Song conducted a comprehensive literature review, interviewed HIV specialists and other clinicians

experienced in treating homeless persons with HIV/AIDS, and conducted a survey of homeless

service providers through the Health Care for the Homeless Clinicians' Network. On March 19-20,

1999, the Bureaus of Primary Health Care and HIV/AIDS of the Health Resources and Services

Administration hosted a symposium to discuss HIV/AIDS and Homelessness, involving HIVinfected

homeless people, health care providers, researchers, advocates and policy makers. Dr. Song

summarized these discussions and information gathered from other sources to develop this document,

in collaboration with the National Health Care for the Homeless Council.

 

The document is intended for clinicians and other service providers, policy makers and advocates,

and contains information that should help all of these parties to better understand and address a variety

of issues faced by persons living with HIV. The document explores current practices of clinicians

who provide HIV care to homeless patients, including factors they should take into account

when prescribing highly active antiretroviral therapy (HAART). It also identifies deterrents to

HIV/AIDS prevention and optimal care for homeless individuals, and suggests directions for further

discussions among clinicians and policy makers to help overcome these barriers.

 


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III. HIV PREVENTION

 

S. A. was 21 years old when I met her in March 1997. She was brought to our urgent

care clinic by an outreach worker who told me that S. A. only spoke Spanish and was

recently released from jail for prostitution. She was at the time in one of the city shelters,

where our medical and social services staff had established a satellite clinic. S.A. is

a transgender male to female, who tested HIV-positive a year before. She was rejected

by her family in Mexico and came to the U. S. two years ago with a boyfriend. Shortly

after arriving in the States, S. A. was alone and depending on sex work for an income.

She had multiple sexual encounters without protection, at her clients' requests. She

was smoking methamphetamines and using injectable estrogens as frequently as she

could to keep her feminine characteristics.

- Linette Martinez, M.D., San Francisco

 

A. Background

 

Homeless individuals engage in behaviors that place them at high risk for HIV infection, and do so

at alarming rates. These behaviors include injection drug use (Rekart; Erickson; Lieberman), highrisk

sexual behavior (Johnson; Hudson; Kouzi), needle-sharing (Williams; Rekart; Beardsley; Bluthenthal),

shooting gallery use (Celentano; Beardsley), and exchange of sex for money or drugs

(Schilling; Corby). High-risk behaviors are motivated by the need to subsist on the streets, by cooccurring

mental illness and substance abuse, and by a peer culture that encourages these behaviors.

Data regarding the prevalence of addictive disorders among homeless people are varied. Studies

conducted in the 1980s, from which high prevalence rates are often quoted, over-represented longterm

shelter users and single males, among whom rates of substance abuse are known to be especially

high. Moreover, these studies reported lifetime substance use rather than current addiction

(NCH). It is estimated that the prevalence of drug use among homeless people is 30-40% (Koegel),

although some studies have demonstrated even higher proportions (Susser; Spinner; Robertson).

 

Substance Abuse Treatment

 

Although there are no generally accepted prevalence rates that accurately describe the proportion of

all homeless adults engaging in substance abuse, addictions are generally acknowledged to be more

prevalent in homeless than in domiciled populations. Nevertheless, treatment for substance abuse

and dependence is not usually available to homeless men and women, who are sometimes denied

treatment because they are homeless. Active substance abuse is associated with lack of access to

HIV care and poor adherence to antiretroviral therapy (Samet; Eldred; Ohmit).

 

In a study conducted by the HCH Clinicians' Network, 78% of homeless health care providers surveyed

found it difficult to obtain substance abuse treatment for their HIV/AIDS patients

(HCHCN). Other studies found that less than half of homeless individuals in need of addiction

treatment obtained it (NCH), and that patients were excluded from treatment because they were

homeless (Oakley). Although estimates of the prevalence of alcohol and other drug use among

homeless individuals vary, alcohol use and alcohol use disorder are acknowledged to be more common

among homeless than domiciled individuals (Robertson; Susser; Breakey; Wright).

 


9

Mental Health Care

 

High-risk behaviors are practiced regardless of a co-occurring mental illness (Valencia; Susser;

Goldfinger; Fischer), but mental illness is both an impetus and a consequence of substance abuse in

many homeless people, and can exacerbate high-risk behavior. Mental illness also complicates HIV

prevention and care (Ferrando; Singh; Chesney). Like addiction treatment, mental health services

for homeless people are often inadequate (Oakley). The HCHCN survey found that 69% of providers

had difficulty obtaining mental health services for their homeless patients.

 

Targeted Prevention

 

Homeless men and women engage in the exchange of sex for money or drugs, but lack the resources

to engage in safer sexual or other practices. Homeless women with children may place themselves at

increased risk for HIV transmission in response to the economic pressure of having to provide for

their families with few marketable skills. Individuals identified as homeless are more likely to engage

in high-risk behavior during periods of homelessness compared to periods of relative stability

(Celentano).

 

Few prevention programs are designed for people without stable housing, and studies demonstrate

that existing risk reduction interventions may not be as effective for homeless individuals as for their

domiciled counterparts (Clatts; Abdul-Quader). Nevertheless, successful risk reduction has been

demonstrated in homeless populations as a result of targeted prevention programs (Nyamathi;

Susser; Goulart).

 

Harm Reduction

 

Harm reduction refers to activities that are designed to reduce or minimize the damage caused by

high-risk behaviors such as injection drug use and prostitution (McMurray-Avila), with the ultimate

goal of eliminating these behaviors. Essential to the process of harm reduction is engagement, with

the realization that elimination of high-risk behavior may take time and small steps. Harm reduction

techniques include needle exchange programs, safe injection education (such as sterilizing needles

with bleach), safer sex negotiation, and relapse policies which recognize that treatment success

is often preceded by multiple episodes of failure.

 

B. Recommendations

 

Clinical Recommendations

 

HIV prevention and risk reduction should be an integral part of any program serving homeless people.

To be successful, prevention initiatives should include the following elements:

  • Provider training. All service providers who work with homeless people on a regular basis, both clinical and non-clinical, should be trained in HIV prevention.

  • Engagement. Primary care providers should inquire tactfully but persistently about high-risk behaviors as a routine part of clinical assessments. Clinicians should provide HIV prevention and risk reduction information and resources to their homeless clients, and should actively engage them in preventing risky behaviors.

  • Cultural sensitivity. Information about HIV prevention and risk reduction should be culturally


10

and linguistically appropriate for the people expected to benefit from it. More educational materials targeted to particular homeless populations should be developed and made available.

  • Outreach. Street-based outreach is needed to convey HIV prevention information and resources to unsheltered homeless persons. Targeted outreach to special populations - women, transgendered individuals, persons with chemical dependencies and rural populations - is particularly needed. Prevention strategies should include providing access to condoms and clean needles. Outreach services must be linked to HIV counseling and testing and to primary care services.

  • Multidisciplinary linkages. Because many homeless people have multiple and complex health conditions that heighten their risk for HIV infection, risk reduction interventions should involve clinicians from multiple disciplines. All programs serving homeless individuals should establish linkages with and provide referrals for primary care, substance abuse treatment and mental health services.

  • HIV screening and testing. Access to HIV screening and provision of HIV prevention information in shelters and mobile units are essential parts of risk reduction. Incentives should be provided to encourage patients to return for test results. Testing and treatment for sexually transmitted diseases should also be provided, when necessary.

  • Substance abuse treatment. Substance abuse treatment providers should assess their clients' living conditions prior to beginning and concluding treatment. Homeless individuals should be given priority for in-patient addiction treatment and for referrals to support services including transitional housing following discharge.

  • Harm reduction. Harm reduction should be an integral component of HIV prevention. Health care and other service providers should be trained in introducing and advocating harm reduction techniques. Substance abuse treatment programs should adopt relapse policies that incorporate the concept of harm reduction.

Public Policy Recommendations

Support is needed for the following targeted HIV prevention activities:

  • Housing. Better linkages should be established among housing programs, health departments, HIV prevention programs and health care providers. Housing for homeless people should be funded as a preventive health measure.

  • Community planning groups. State and local HIV Prevention Community Planning Groups should place a high priority on the needs of homeless persons.

  • Harm reduction. Interventions designed to reduce HIV transmission risks for injection drug users, especially needle exchange programs, should be adequately funded to provide clean needles, syringes and substance abuse treatment.

  • Mental and behavioral health care. Funding should be increased to provide more on-demand

  • substance abuse and mental health treatment.


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IV. ACCESS TO CARE

 

Larry is a 52-year-old black man who was first seen in the Homeless Health Care

Center on May 17, 1988. At the time, he was sleeping on the street and in shelters.

During 1988, he had eight clinic visits, mainly to treat multiple episodes of tracheobronchitis

and to monitor his blood pressure. On April 5, 1990, he left the clinic

without being seen. During the next two years, Larry visited intermittently. His use of

alcohol and crack was heavy during this time. On August 2, 1994, he returned to the

clinic with a laceration under his right eye; he also informed the staff that he had been

HIV-positive since May. Labs were ordered, but Larry left without having his blood

drawn. He was referred to a caseworker, but he also left without seeing the caseworker.

In September, he finally came back to have his blood drawn; his CD4 count at the

time was 480. He was not seen until August 1997. He had been receiving care at the

VA, and brought in his medications - AZT, Epivir, Phenergan, and Desipramine.

The prescriptions were filled.

- Ardyce Ridolfo, MSN, FNP, RNC, Chattanooga, TN

 

A. Background

 

Barriers to Health Care

Homeless men and women face a host of barriers to health care, including lack of awareness of

services and resources, suspicion of health care institutions, lack of insurance, competing subsistence

needs, transportation difficulties, lack of comprehensive services and poor provider attitudes

(McMurray-Avila; Gallagher; Gelberg; Woods; Brickner). As a result, many homeless people have

no regular source of health care, and fail to seek or obtain medical attention even for known medical

conditions. Moreover, despite having more serious and complex health conditions than poor

people who are housed, homeless individuals have demonstrably less access to health care.

  • A study of homeless individuals in Los Angeles found that 66% had no medical insurance, 56% had no regular source of care, and study participants had, on average, 2.9 physician contacts in a year. These figures are contrasted to a national poverty sample of housed people which reports 36% without insurance, 24% without a regular source of care, and 6.3 physician contacts a year (Gallagher).

  • Another study from Los Angeles reported that 14% of homeless respondents had never sought medical attention for a known medical condition and only 51% with a known medical condition had sought medical attention in the previous year (Roper). Only 47% of homeless men and 30% of homeless women in Baltimore could name a usual source of care (Breakey). Access barriers are exacerbated for homeless individuals living with HIV/AIDS, which is associated with poorer health care access than other chronic conditions (Cunningham). The HIV Costs and Services Utilization Survey (HCSUS) found that large proportions of people living with HIV who needed medical care did not receive it because of competing subsistence needs such as food, housing, or transportation (Cunningham).


12

  • In one study, HIV-positive individuals who were homeless had fewer ambulatory visits than those who had homes (Arno). In a New York City shelter with a 62% HIV seroprevalence rate, only 10% of homeless clients requested medical help (Torres). Similarly, the Boston Health Study found that homeless people with AIDS had three times more difficulty accessing care than did housed people with AIDS because of unmet needs (Weissman).

  • The Health Care for the Homeless Clinicians' Network (HCHCN) found that primary care clinicians experience difficulty obtaining various kinds of health care for large percentages of their homeless HIV/AIDS patients: general non-HIV/AIDS care (58%), subspecialty care (73%), respite care (57%) and case management (48%).

Several factors affect HIV-infected homeless persons' health and access to health care:

  • Housing. An essential element of successful HIV/AIDS care is housing, which provides a place to store medication and food, a stable water supply, bathroom facilities, a secure place to rest, a dependable contact location, protection from harm, emotional security and hope. The lack of safe and stable housing has a significant negative impact on the health of homeless people with HIV/AIDS (Lieberman; Low; Song). A study from Los Angeles found that 50% of housed individuals with HIV/AIDS felt they were at high risk of becoming homeless (Low). An evaluation in Philadelphia found 44% of persons with HIV/AIDS living in residences they were unable to afford, a significant risk factor for subsequent homelessness (Acquaviva).

  • Health insurance. Lack of health coverage is associated with lower access to HIV/AIDS care (Cunningham; Hecht). The HIV Costs and Services Utilization Survey revealed that only 15.6% of homeless individuals with HIV/AIDS had any kind of medical insurance (Arno). This problem is becoming more acute; homeless clinics nationally reported a 35% increase in the number of clients who were uninsured between 1996 and 1997 (O'Connell).

  • Entitlements. Although homeless individuals with an AIDS diagnosis may obtain Medicaid disability coverage, an HIV diagnosis alone does not trigger either Medicaid eligibility or coverage of HIV care in many states. This distinction between HIV and AIDS impedes early aggressive care, which is essential for treatment success.

  • Transportation. Fragmentation of services is a significant access barrier. Clients must often travel to several different locations to obtain necessary care and services. Many clients do not have financial resources to pay even minimal transportation costs.

  • Racial and ethnic background. Most studies on homeless populations with HIV/AIDS have been conducted predominantly among African-Americans (Zolopa; Fournier; Lebow; Allen) who have been shown to have less access to HIV care than white Americans (Pfeffer; Solomon; Stone; Easterbrook).

  • Confidentiality. HIV/AIDS remains a stigma. Because HIV-infected homeless people are often shunned even by shelter staff and other homeless people, they do not want others to know they are receiving HIV/AIDS care (ACLU). Respecting confidentiality and advocating for patient rights under the Americans with Disabilities Act, if necessary, are essential to an ongoing clinical relationship with these clients.

  • Compassion. Clients often feel isolated and distrustful of institutions. Providers and clinicians are not always compassionate in their care and may not pay attention to the special needs of homeless individuals. Empathy and compassion are necessary for successful engagement and treatment, particularly when caring for a population that has been traditionally marginalized.

  • Incarceration. Many criminal justice facilities provide substandard or inadequate HIV care or


13

none at all. Because inmates cannot use outside care facilities, they may be excluded from HIV

care altogether.

  • Special populations. Women, homeless people in non-metropolitan statistical areas (MSAs), undocumented immigrants and transgendered individuals experience even greater barriers in obtaining health care than do other homeless people with HIV/AIDS. Family responsibilities often prevent women without stable housing from seeking care for themselves. Homeless people in small towns and rural areas have fewer available health facilities, and must travel greater distances to obtain care. Undocumented immigrants experience legal, health coverage and language barriers to health care, and trangendered individuals are less likely to seek services because of fear of discrimination and violence.

HIV Counseling and Testing

 

Homeless people do not have sufficient access to HIV testing. A large study of injection drug users

in New York City found that only 45% of homeless participants had ever been tested for HIV, compared

to 58% of housed participants (Rockwell). A shelter-based study in New York City reporting

an HIV seroprevalence of 62% found that only 18% of participants had ever received an HIV test

(Torres); and in San Francisco, investigators found that only 25% of homeless individuals living

with HIV had ever been tested before the study began (Zolopa). Rates of return to obtain HIV test

results are also poor, with a 66% return rate reported in Atlanta (Paris) and 70% in New York City

(Torres). A study in New Haven, Connecticut, found that only 23% of homeless people ever tested

knew their HIV status (Barry).

 

Eligibility for public assistance, such as Medicaid, is one incentive for homeless individuals to ascertain

their HIV status. Another is learning that chances for successful treatment increase with early

diagnosis. There are, however, legitimate reasons why some patients refuse an HIV test or fail to

return for test results, despite the availability of new treatments - including the debilitating psychological

burden of a positive diagnosis (O'Connell) and fear of discrimination (Gostin; Harvey;

Torres).

 

Continuity of Care

 

Even if available, health care services may not be fully accessible to homeless individuals, many of

whom lack the transportation necessary to travel to various sites where care and services are available.

Care facilities may also lack some of the basic necessities that many individuals take for

granted, such as public bathrooms, accessible food and water, and linkages to housing. Finally,

clinic personnel may not be familiar with the needs of homeless persons. Overworked doctors and

nurses in many public health facilities may not have sufficient time to question homeless patients

about problems they may be having that affect their health care, or to offer these patients the emotional

and logistical support they need. Moreover, some clinicians may not be able to hire adequate

numbers of full-time support staff, depending instead on rotating part-time or voluntary providers.

Not all persons who receive care are able to continue to obtain needed services. Health care may be

discontinued when individuals lose or change health coverage, when they are incarcerated or when

eligibility requirements for public assistance programs change. Disruptions in HIV care can also be

caused by inadequate transportation, competing subsistence needs, lack of institutional capacity,

admittance to and discharge from inpatient facilities and jails, migration, loss of housing and

changes in employment.

 


14

Many homeless people receive primary care at facilities with inadequate links to inpatient care. Providers

may be unaware of changes in patient health, housing or insurance status. Unaware of

HIV/AIDS patients' housing instability or unresponsive to their need for transitional housing, hospitals

may discharge individuals directly onto the street without follow-up care. Unless health care

providers are able to address the many barriers that homeless individuals face in obtaining and

maintaining health care, homeless men and women will not receive the long-term care that is required

for HIV treatment.

 

People without stable housing have less success in keeping referral appointments (Schlossstein),

have poor follow-up for HIV tests (Torres; Barry; Paris) and lack usual sources of care (Gallagher;

Breakey). There is evidence, however, that health care can be successfully provided to HIV-infected

homeless persons. The Boston Health Care for the Homeless Program found that homeless people

with HIV were not presenting to a clinic at significantly later stages of the disease than others, and

that those with a primary care provider made an average of 14.1 visits over a 17 month period (Lebow).

Other encouraging results from an observational study of care in San Francisco revealed that

72% of homeless persons with HIV/AIDS could name their primary care provider and 92% were still

enrolled after two years (Bangsberg).

 

Appropriate and proficient care

 

Patients experience better health outcomes when their health care providers have extensive

HIV/AIDS expertise (Kitahata). Unfortunately, expert HIV care is not generally available to patients

who are homeless. Homeless individuals may have access only to clinicians and other service

providers who are not trained in HIV/AIDS care. Few non-clinical service providers have accurate

knowledge about HIV/AIDS or the special needs of clients who are undergoing treatment for the

disease (ACLU).

 

The effectiveness of care for homeless individuals with HIV is also influenced by their health care

providers' level of proficiency in both HIV/AIDS care and homeless care. Because a significant and

growing number of people are infected with HIV and are either homeless or at risk of homelessness,

providers require dual proficiencies. Cross-training of providers in both HIV/AIDS care and the care

of homeless people is necessary to meet the needs of the expanding homeless and HIV-positive

population.

 

The appropriate training and specialization of providers who practice primary HIV/AIDS care has

been a national concern. Even when homeless people have access to specialty HIV clinics, they

continue to seek care at homeless primary care clinics because of their familiarity and convenience.

Therefore, homeless providers will always need to be proficient in the primary care of HIV-infected

individuals.

 

Homeless people with HIV/AIDS often work with service providers other than clinicians. With the

exception of HIV/AIDS case managers, very few of these personnel have sufficient knowledge of

HIV/AIDS care. Individuals who manage shelters and control access to medications, food and water

often lack basic understanding of antiretroviral therapy, including the timing of medications,

food and water requirements, and the need for strict adherence to treatment regimen.


15

B. Recommendations

 

Clinical Recommendations

 

1. Initial assessment. Intake interviews for homeless men and women should include a housing

assessment. During the initial visit, providers should assess the health care access barriers each

patient may face, including:

  • Knowledge, attitudes and past experiences with health care and health care providers;

  • Financial, employment, housing, and insurance status;

  • Subsistence needs (food, water, shelter, etc.);

  • Transportation requirements;

  • Need for treatment of mental illness and/or active substance abuse; and

  • Caregiver status and family responsibilities.

Providers should be alert to additional access barriers faced by homeless women, racial and ethnic

minorities, undocumented immigrants, migrant farm workers, rural populations, parolees,

homosexuals and transgendered individuals, including fear of violence and discrimination.

 

2. Individualized care plan. Clinicians and case managers should develop individualized care plans

for their patients, addressing the special needs of homeless persons identified during and after

the initial assessment. An example might be making arrangements with local public transportation

authorities to accommodate patients unable to walk to clinic appointments and seeking

funding for travel support, where needed.

 

3. On-site services. All services required by HIV/AIDS patients should optimally be available at

the same location.

 

4. Provider education. To serve the growing population of HIV-infected homeless people, clinicians

must develop dual proficiencies in HIV/AIDS care and homeless care. All service providers

who work with homeless individuals should be educated about basic HIV/AIDS care principles

and practice. These workers include:

  • Physicians, nurses and other medical providers;

  • Mental health and substance abuse counselors;

  • Case workers and managers;

  • Peer counselors and outreach workers; and

  • Shelter and soup kitchen personnel.

Similarly, HIV specialists should be educated about the special access barriers, co-occurring disorders

and non-medical needs of homeless clients.

 

5. Continuity of care. Better discharge planning from hospitals and criminal justice facilities is

badly needed to promote continuity of care for homeless HIV/AIDS patients. Properly designed,

centralized data systems may help to make this possible. Providers should anticipate and attempt

to minimize potential disruptions in patient care caused by:

  • Changes in insurance benefit or eligibility status, including loss of Medicaid;

  • Instability and loss of housing;

  • Fluctuations in subsistence needs and access to transportation;

  • Admittance to and discharge from inpatient facilities;

  • Incarceration and release from criminal justice facilities;

  • Seasonal changes;


16

  • Migration and transience; and

  • Change in caregiver or head of household status.

6. Interdisciplinary and interagency linkages. Health care providers should establish linkages to

non-clinical service providers to prevent disruptions in care. Primary care providers and

HIV/AIDS specialists should develop collaborative relationships to ensure quality of care, including

basic HIV/AIDS care and practice.

 

7. Provider flexibility. HIV/AIDS caregivers should establish flexible hours to accommodate

homeless persons and to facilitate care for shelter dwellers who may have curfews.

 

8. Patient confidentiality. In all health care and service delivery settings, patient confidentiality

should be a priority; patients should be reassured that their privacy is being protected by individuals

and institutions.

 

9. Compassionate care. Providers should empathize with their patients through becoming better

informed about the difficulties they face, and should take steps to remove health care access barriers

and to prevent and address homelessness.

 

10. Homelessness prevention. Linkages to housing assistance programs such as Housing Opportunities

for People with AIDS and eviction prevention education should be an integral part of

HIV/AIDS programs. In addition, better discharge planning from hospitals and criminal justice

facilities is necessary to prevent homelessness from occurring.

 

Public Policy Recommendations

 

1. Outreach and HIV testing. More public and private funding is needed for HIV outreach and

testing programs for homeless people.

 

2. Health coverage. Medicaid coverage should be expanded to include anyone infected with HIV

disease, regardless of the existence of clinical manifestations. Ryan White CARE Act (RWCA)

funding and third-party payers should provide reimbursement for necessary goods and services,

including some not routinely covered (e.g., substance abuse treatment). The AIDS Drug Assistance

Program (ADAP, part of RWCA) coverage should continue during incarceration, migration

or transience.

 

3. SAMHSA block grants. States that receive substance abuse and mental health block grant resources

should demonstrate that they allocate money to the care of homeless people living with

HIV/AIDS.

 

4. Coordination of public housing services. Greater coordination is needed among government

agencies providing housing and HIV/AIDS services, including the Department of Housing and

Urban Development and the Department of Health and Human Services' Health Resources and

Services Administration.

 

5. Local health departments. Because shelters, drop-in facilities and food lines are ideal sites for

health interventions, local health departments should help to fund, maintain and increase their

involvement in these services. Local health departments should employ individuals with expertise

in homeless health care and increase their support of homeless service providers.

 


17

6. Interagency Council on the Homeless. The Interagency Council on the Homeless should direct

more attention to problems associated with HIV/AIDS and enhance necessary linkages

among other agencies.

 

7. Criminal justice. Jails and prisons should ensure that HIV/AIDS care continues uninterrupted

during incarceration, and that appropriate discharge planning is completed for former prisoners

with unstable housing arrangements.

 

8. Support for provider training. The educational activities of the Bureau of Primary Health Care

and the HIV/AIDS Bureau should be expanded to include more HIV/AIDS and homelessness

training for health center providers and staff as well as other service providers.

 


18

V. GENERAL HIV CARE

 

I met Mr. R. in the homeless shelter around 1994. He had been a resident of multiple

homeless shelters in the city as well as up and down the state of California for the past

four years. A non-smoker and non-drinker, Mr. R was generally in good health until

August 1990. At that time, he was residing in the Episcopal Sanctuary Shelter, where

he was treated for a fever and cough for six weeks before being admitted to San Francisco

General Hospital. I was doing outreach at the shelter, and found him in his bed

with a fever of 103°F. I took him to the emergency room and stayed with him until he

was admitted. Mr. R. was hospitalized for two days. He had an unremarkable work-up.

However, his HIV test returned positive. Previously, he had mentioned that he had

had a negative HIV test, but it turned out that he had end-stage AIDS. Perhaps he

was in denial. His initial CD4 count was 8, and his viral load was 300,000. His fever

turned out to be secondary to cryptoccocal meningitis and pneumonia.

- Chuck Marion, M.D., San Francisco

 

D. W. is a 30-year-old female I first met in our urgent care clinic in August 1997. She

insisted that she wanted to start antiretroviral treatment. At that time, she was housed

via the AIDS Foundation and accompanied to the clinic by her HIV-negative boyfriend

T. R., who seemed very supportive. She admitted to crack use, but said that

both she and T. R. had been clean and sober for two weeks. On July 22, her viral load

had been greater than 800,000 and her CD4 count was 187. On this first visit, I did

something I probably would not do now: I wrote a prescription for Zerit, Epivir and Viracept.

 

We discussed the necessity of adherence and possible side effects. For some reason,

I sensed that D. W. was committed to sticking with therapy. .As of October 29,

her viral load was undetectable and her CD4 count 446. During much of 1998, D.W.

received care at BAPAC, the Bay Area clinic for HIV-positive prenatal care. In June

1998, D. W. delivered a healthy HIV-negative baby girl; D. W. and the baby received

peripartum AZT.I did not see D. W. again until September 14, when she came to urgent

care with pharyngitis. She was using crack cocaine again. As of September 30, she

was off ART with a CD4 count of 350 and an HIV viral load of 40,000.

- Alisa Oberschelp, M.D., San Francisco

 

A. Background

 

The treatment of homeless individuals with HIV/AIDS must include vigilant control of associated

medical conditions that may complicate HIV care and cause health to deteriorate. Homeless people

with HIV/AIDS are particularly susceptible to a number of other medical conditions which, untreated,

may exacerbate their illness and even threaten their survival. Crowded, unsanitary living

conditions increase their risk of exposure to communicable diseases and parasites. Limited resources

result in unmet subsistence needs, reducing their natural resistance to disease. Their vulnerability is

compounded by the gradual destruction of their immune system by HIV. Limited access to routine

health care, described in the previous section, may increase the severity of medical conditions

through delayed treatment.

 

Respiratory infections (Weinreb; Brickner) and infestations are especially common (Brickner;

Wright; Gillis). One study found that 14% of homeless adults had suffered from influenza the previous

year (Marwick). The prevalence of tuberculosis is higher among homeless people than in the

 


19

general population (Brickner), and higher still in homeless people whose immune systems are compromised

by HIV/AIDS (Zolopa; Torres; Saez; Gollub; Gordin). Infestations such as scabies and

fleabites tend to be much more florid in people with HIV/AIDS, and some conventional treatments

are ineffective in those with advanced disease (Berger).

 

Other prevalent conditions in the homeless population include diabetes (White), hypercholesteremia

(Gelberg), anemia (Breakey) and chronic gastrointestinal tract illnesses (Weinreb; Wright).

Homeless persons also have high rates of liver disease, most often secondary to viral infection or alcoholism

(Wright). Neurologic disorders are also more frequent; one study revealed that homeless

people were six times more likely than housed persons to suffer from neurologic conditions

(Wright). Less well documented medical conditions include soft tissue infections and peripheral

neuropathies.

 

Poor caloric intake, malnutrition (Gelberg; Weinreb; Wright; Wiecha) and consequent loss of muscle

mass, common among homeless people, are associated with increased AIDS morbidity and mortality

(Schambelen). As little as 5% loss of muscle mass over four months is associated with an increased

risk of opportunistic infections and death (Wheeler).

 

The following studies document conditions that are more common among homeless persons living

with HIV/AIDS:

  • A study from San Francisco reported 8.5 times greater likelihood of infection with Bartonella quintana, the bacterium that causes bacillary angiomatosis-peliosis (Koehler).

  • Researchers in Boston found differences in AIDS-defining diagnoses, including esophageal candidiasis (17% vs. 9%) and disseminated TB (9% vs. 2%) (Lebow).

  • A study from New York found higher rates of bacterial pneumonia in HIV-infected persons (Torres).

  • A study in New York City reported 21% of HIV/AIDS patients with syphilis and 43% having antibodies to hepatitis B (Torres).

  • A study from Baltimore not limited to HIV/AIDS found hepatitis B seroprevalence to be 45% among homeless people (Osher); another revealed that 37% of homeless injection drug users were hepatitis C (HCV)-seropositive (Garfein).

In addition to other concerns about substance abuse, medication interactions and painful HIVrelated

neuropathies may require the prescription of narcotics to HIV-infected individuals with a

history of substance abuse. Homeless persons may sell these prescribed medications on the street,

where there is an active market for over-the-counter and prescription drugs.

 

Immunizations and Testing

 

Immunizations are critical for persons living with HIV/AIDS, whose immune systems lose the capacity

to fight disease. Vaccinations for influenza, pneumococcal infection and hepatitis A are absolutely

essential because of frequent outbreaks of these conditions among shelter dwellers and high

rates of hepatitis C in the homeless population. Homeless people have not demonstrated poorer

rates of completing hepatitis B vaccination regimens and should receive this precautionary measure.

Co-infection with hepatitis C - which occurs in approximately 40% of all HIV-positive individuals

- can hasten full-blown AIDS and death. Although no vaccine is currently available to prevent

hepatitis C, HCV testing and antiviral therapy are recommended by some clinicians, in addition to

hepatitis A and B immunizations, to reduce morbidity and mortality in persons co-infected with

 


20

HIV (Dietrich).

 

In a Boston study, only 56% of homeless patients with HIV/AIDS had received a pneumococcal or

influenza vaccination and only 36% had received testing for syphilis; 46% had received PPD testing

for tuberculosis; 28% had received PAP smears; and 37% had been tested for hepatitis B or C (Lebow).

A study from San Francisco revealed that 25% of homeless persons with HIV/AIDS found to

be PPD positive had never been tested before (Zolopa). Less than 20% of a high-risk subset of

homeless people in New Haven had received a pneumococcal vaccination, and only 27% had received

an influenza vaccination (Barry).

 

Tuberculosis

 

As mentioned, the prevalence of TB is higher among homeless people than in the general population.

Crowding and poor ventilation, common in many homeless facilities, make transmission easier;

poor access to health care prevents treatment of primary TB; and suppression of the immune

function by HIV infection and other conditions common to homeless people makes activation of TB

more likely (NHCHC). Latent TB prevalence is extremely high among homeless persons with

HIV/AIDS, ranging from 32% to 67% in populations studied (Zolopa; Torres). A study in New

York City found 22% of HIV-infected participants with active TB and 4% with extrapulmonary TB

(Torres). Another study of homeless men with HIV/AIDS found a 50% prevalence of active TB

(Saez). These figures are much higher than the 4.7% - 10% prevalence of active TB generally

found among persons with HIV/AIDS (Gollub; Gordin).

 

Homeless people have poor rates of return to have tuberculin skin tests read (Torres; Barry) and

poor rates of adherence (11% - 55%) to TB prophylaxis (Brudney; Pablos-Mendez; CDC). Directly

observed therapy programs have also demonstrated poor adherence to TB treatment regimens

(Nazar-Stewart; Burman), which is associated with high rates (19% - 60%) of drug-resistant tuberculosis

(Pablos-Mendez; Morris; Barry). Nevertheless, successful experiences with TB prophylaxis

and treatment are also reported, by programs that vary dramatically in their approaches to adherence

promotion. Some interventions emphasize cultural sensitivity, using peer advisors and financial

incentives (Pilote); others employ more coercive techniques such as detention (Oscherwitz).

 

Homeless Women

 

As noted in the previous section, homeless women face special barriers to health care. Like housed

mothers, homeless mothers tend to subordinate their own health needs to those of their children;

but the extraordinary demands of raising a family without stable housing are especially disruptive to

regular health care for these women. Stretched thin by multiple roles as childbearer, caregiver and

provider, homeless mothers are often dealing simultaneously with the psychological effects of trauma

and abuse (Bassuk). Competing subsistence needs and caregiver roles have been found to adversely

influence health care access for women living with HIV/AIDS (Shelton, Cunningham).

 

Moreover, the needs of women with children may be overshadowed by those of single men, who

comprise the vast majority of clients served in many homeless health care projects. Nevertheless,

women with families now constitute more than a third of the homeless population (Weinreb). Although

having a family may increase or decrease accessibility to a shelter, depending on the program,

having children usually hinders access to health care for homeless mothers.

 

Single homeless women are more likely to have addiction disorders, suffer from mental illness, and

 


21

trade sex for commodities or housing. They are consequently at increased risk for contracting

HIV/AIDS, but may have difficulty obtaining addictions treatment, mental health services and

screening for STDs, which could lower their risk.

 

Certain conditions that are more prevalent among homeless than domiciled women have been

shown to be directly related to homelessness. Researchers in Worcester, Massachusetts, found that

41% of homeless women had a history of substance abuse or dependence compared to 34.7% of

housed women. Homeless women were less likely to have a regular provider or source of care, and

were more likely to list lack of childcare as a barrier to care (Weinreb). These findings were reproduced

in Los Angeles (Wood) and Philadelphia (Parker). A study in St. Louis showed that 48.6% of

homeless women had a psychiatric disorder, compared with 31.7% of low-income domiciled women

(Smith). Major depression was over twice as prevalent among homeless women surveyed, and the

prevalence rate of posttraumatic stress disorder was more than ten times higher for homeless than

housed women (Smith).

 

Homeless women are more likely to be victims of domestic violence or sexual abuse than are housed

women (Weinreb; Wood). "Homeless women frequently associate with men for protection and end

up being sexually abused; they are four times more likely than domiciled women to be raped"

(Fisher, as cited in ACLU). Women with HIV/AIDS may suffer from greater psychological stressors,

including violence. The National Institutes of Health Women's HIV Interagency Study found that

nearly 50% of women with HIV had suffered sexual abuse in the past, and 60% had experienced

domestic violence (Anderson).

 

Women with HIV are particularly susceptible to a number of conditions including the human papilloma

virus, the most common genital tract infection, which is associated with increased rates of

neoplasia (cervical cancer) and decreased immune function. Because women have often been excluded

from clinical trials due to concerns about pregnancy (Mangino), the effect of HIV medications

on pregnant women is not well understood. Preventing vertical transmission of HIV from infected

mothers to their babies through pregnancy or breast-feeding is an additional concern for these

women and their caregivers.

 

Access to care is related to the quality of care that women receive. Less than half of homeless

women surveyed in a multi-site study from Massachusetts could name "a family doctor or hospital

from which they had received 'helpful' treatment within the previous year" (Bassuk). Investigators

in Philadelphia reported that 19% of homeless mothers could not even identify a place where they

could go for care (Parker). HIV counseling, testing and treatment are among the services which

women have particular difficulty obtaining. A multi-site study found that significantly fewer women

than men received pre- and post-test HIV counseling (Weissman), and women have been found to

have lower CD4 counts and higher HIV viral loads when they enter care (Bartlett). Women are less

likely to be seen by an experienced clinician (Kitahata), and less likely to receive OI prophylaxis or

antiretroviral therapy than men (Bartlett; Odem).

 

Rural Areas1

 

Measuring homelessness is difficult in rural areas, where there are few shelters or places homeless

people congregate (NRHA), and where "doubling up" with friends or family members is more common

than on-the-street homelessness. Nevertheless, rural homelessness is a significant and growing

 


1 Adapted from comments by Martha McKinney, Ph.D., President, Community Health Solutions, Inc.

 


22

problem. Extrapolations from statewide studies in Iowa and Pennsylvania indicate that approximately

11% - 14% of homeless people in America live in rural settings (Foster); two other statewide

studies estimate a proportion of 18% (NRHA).

 

The U.S. Public Health Service measures AIDS case rates according to prevalence in metropolitan

statistical areas (MSAs) or non-MSAs.2 As of December 1997, non-MSA residents accounted for

5.7% of cumulative AIDS cases and 7.2% of new AIDS cases reported in that year (CDC). The

AIDS case rate increased by 60% in non-MSAs between 1991 and 1997 as compared to 43% in

large metropolitan areas (CDC).

 

Homelessness may not be as prevalent among individuals with HIV/AIDS who live in rural areas as

among urban dwellers (McKinney), but studying HIV in rural communities presents additional

challenges. Two studies of HIV patient migration patterns found individuals leaving large cities to

live with their families in rural areas (Cohn; Davis). A third study found rural HIV-infected women

living with family members, husbands, partners or friends (McKinney).

 

Although homelessness manifests itself differently in rural and urban areas, homeless individuals in

both settings have one thing in common - unstable and often inadequate living arrangments.3 Evidence

that many individuals in rural areas live in inadequate housing (McKinney) is substantiated

by the fact that more than half of substandard housing in the United States is located there (Sowell).

Even though literal homelessness may be less frequent in rural areas, individuals living there

with HIV/AIDS, like their urban counterparts, often lack running water or refrigeration - conditions

that complicate HIV care (Berry; Sowell).

 

Persons who live in rural areas without stable and adequate housing face some of the same health

care access barriers encountered by homeless persons in urban areas. These barriers are exacerbated

by scarcity of concentrated resources, greater distances to travel, rugged terrain or severe weather to

overcome in seeking health services, and fewer public modes of transportation (McKinney; Berry).

In rural areas of the Southeast, people with HIV/AIDS often travel as long as two hours to see an

infectious disease specialist in a tertiary care center (McKinney).

 

Provider attitudes can negatively affect care for rural HIV/AIDS patients, who tend to be diagnosed

 


2 The Office of Management and Budget defines a non-metropolitan area (non-MSA) as either a county with a city of less than 50,000 residents or an area that is not part of a county or group of counties with at least 100,000 people.

3 A homeless individual is defined in section 330(h)(4)(A) of the McKinney Act as "an individual who lacks housing (without regard to whether the individual is a member of a family), including an individual whose primary residence during the night is a supervised public or private facility (e.g., shelter) that provides temporary living accommodations, and an individual who is a resident in transitional housing." The Bureau of Primary Health Care has expanded this definition in its description of Health Care for the Homeless program expectations for federal HCH grantees to capture the many faces of homelessness: "A homeless person is an individual without permanent housing who many live on the streets; stay in a shelter, mission, single room occupancy facility, abandoned building or vehicle; or in any other unstable or non-permanent situation. An individual may be considered to be homeless if that person is 'doubled up,' a term that

refers to a situation where individuals are unable to maintain their housing situation and are forced to stay with a series of friends and/or extended family members. In addition, previously homeless individuals who are to be released from a prison or a hospital may be considered homeless if they do not have a stable housing situation to which they can return. A recognition of the instability of an individual's living arrangement is critical to the definition of homelessness." (Principles of Practice for Health Care for the Homeless grantees, Bureau of Primary Health Care/HRSA/DHHS, March 1, 1999)

 


23

later because HIV/AIDS is perceived to be an urban disease and their physicians do not consider

them to be at risk (NRHA; McKinney). The HIV Costs and Services Utilization Survey found that

only 1.4% of rural people living with HIV/AIDS were receiving medical care in the area where they

lived (Cohn, 1994). Even if physicians are available, many rural providers do not have adequate

HIV experience (McKinney).

 

Confidentiality may be more difficult to preserve in rural areas (McKinney). Rural residents with

HIV/AIDS are less likely to have medical insurance (Weslowski). A comparison of urban and rural

responses to AIDS-related questions on the 1991 National Health Interview Study revealed that

urban residents were 1.5 times more likely to have been tested for HIV and 1.4 times more likely to

expect to have an HIV test than people in rural areas (Mainous). Undocumented resident status

and transience, in addition to cultural and linguistic barriers, make general HIV care more difficult

to obtain for migrant farm workers, who have extremely high rates of tuberculosis and infestations.

Even when they are able to obtain care, persons living with HIV in rural communities may not have

access to all of the diagnostic tools and routine treatments that are presupposed by current standards

of care. A study of individuals receiving care in rural areas during the first half of 1996 showed that

only 21% had ever had their HIV viral loads checked (Cohn). The same study found that 63% of

homeless individuals with AIDS were receiving Pneumocystis carinii pneumonia (PCP) prophylaxis,

and only 46% were receiving Mycobacterium avium complex (MAC) prophylaxis (Cohn). Fewer

pharmacies carry front-line medications in rural communities, especially where the demand is extremely

low (McKinney).

 

B. Recommendations

 

Clinical Recommendations

 

1. Standards of care. Service providers should abide by evidence-based standards of care for

HIV/AIDS patients; a lower standard should not be used for people who are homeless.

2. Medical history. HIV/AIDS providers should be particularly thorough in documenting their patients'

medical histories, including results of the following examinations and reports:

  • Oropharynx, focusing on poor dentition, candidal infections, and nutritional deficiencies;

  • Skin and nails, looking for infestations, soft tissue infections, bacillary angiomatosis-peliosis, trauma, liver disease, and syphilis;

  • Neurologic, to assess for neuropathies, nutritional deficiencies, syphilis, dementia, and mental illness;

  • Substance abuse, mental illness and medication histories; and

  • Frequent TB testing, up to once every six months.

3. Shorter prophylaxis. Providers should take advantage of shorter prophylactic regimens and use

interventions that increase adherence to prophylatic TB therapy.

4. Immunizations. Health care providers should administer recommended vaccinations, including

hepatitis B, as soon as possible.

 


24

5. Pharmacist education. Providers should educate local pharmacists about the needs of homeless

persons living with HIV/AIDS.

6. Homeless women. Service providers should address the barriers that homeless mothers face,

including lack of childcare, support services for their families and help in obtaining public assistance.

Additional training is necessary to alert homeless service providers to the importance of

providing linkages and referrals to HIV care for homeless women and their families. The special

profile and risk factors of homeless women that should be addressed include:

  • Caregiver status and motherhood,

  • Mental illness,

  • Domestic or other violence,

  • Substance abuse, and

  • High-risk sexual behavior.

7. Rural concerns. Service providers in rural areas should address patient concerns about confidentiality,

transportation, and lack of providers and pharmacies. Health care providers should

assess the dwellings of rural patients to determine adequacy of shelter, medication storage capacity

and water supply.

 

Public Policy Recommendations

 

To improve general HIV care for homeless persons, more resources should be devoted to the following:

  • Primary care. Increased access to primary care providers, particularly in rural areas;

  • Nutrition and water. Improved availability of proper nutrition and clean water;

  • Dental care. More accessible oral health care;

  • Immunizations. Vaccinations for hepatitis A and B, influenza and pneumococcal infections; and

  • Women's health care. Mental health services, addiction treatment, HIV testing and counseling.

 


25

VI. ANTIRETROVIRAL TREATMENT

 

Samuel is a 32-year-old man who entered our therapeutic community for alcohol abuse

treatment. He had tested positive for HIV two years previously. His blood work was

remarkable for a CD4 count of 410 and a viral load of 130,000. An antiretroviral regimen

of AZT, Epivir, and Viracept was prescribed. It was stressed that Viracept had to

be taken on a full stomach. We saw Samuel two weeks later and-among other

things-reminded him to take Viracept after a full meal. He told us he was doing so,

with the exception of Saturday and Sunday mornings. The shelter in which the therapeutic

community was located served three meals on weekdays, but on weekends

served only two meals a day - brunch (at noon) and dinner (in the evening). So on

Saturdays and Sundays, Samuel took his morning Viracept on an empty stomach.

- Elizabeth Lutas, M.D., New York City

 

Being housed and in a more stable situation - and seeing social and nursing staff on a

regular basis - S. A. successfully recovered from rectal surgery and kept her regular

follow-up appointments with me. In October 1997, almost six months after her initial

visit and frequent subsequent visits, I felt comfortable and eager to begin ART. She

started AZT, 3TC, and Nelfinavir. The regimen caused her only minimal diarrhea, and

after a month her viral load had decreased considerably to 16,000 and her CD4 had

doubled. These results were encouraging, but after three months, her viral load was

again over 300,000. S. A. disclosed to me that she had stopped the Nelfinavir after the

first month because there were too many pills, and that very rarely would she take the

3TC or AZT. A few months later, her CD4 count was 10, but we felt ready to attempt

therapy again. With the assistance of the Bridge Project physician and other staff, we

amplified and reinforced the message of adherence. Since May 1998, her viral load has

been undetectable, and her last CD4 count was 240. I keep frequent visits with her.

.There are still many obstacles, however. Bridge Project housing, for example, is

limited to 18 months.

- Linette Martinez, M.D., San Francisco

 

A. Background

 

In recent years, biomedical research has made significant strides in the development of antiretroviral

agents that can delay the onset of AIDS. Antiretroviral therapy (ART) is directed toward suppressing

the replication of HIV-1 (the most common HIV viral strain) in order to improve HIVrelated

symptomology, preserve and restore immune function, and decrease viral burden. There are

currently 14 approved antiretroviral drugs divided into three classes that are prescribed in recommended

three-to-five drug combination cocktails called highly active antiretroviral therapy

(HAART).

 

HAART has been demonstrated to profoundly suppress viral replication, increase immune function,

and improve quality of life. It can also decrease the incidence of opportunistic infections and other

AIDS-related conditions by as much as 75% - 80% (Pallela; Moore; Hammer). Some anecdotal reports

indicate that HAART has led to long-term remission of CMV retinitis and disseminated MAC

infections (Whitcup; McArthur). It may also lead to the resolution of crytosporidiosis, microsporidiosis

and progressive multifocal leukoencephalopathy - conditions previously thought to be incurable

(Carr; Hoffman). HAART is also associated with a significant decrease in hospitalizations

 


26

for AIDS-related conditions (Torres; Goetz), a significant decrease in mortality (Palella; Hogg;

Chaisson), and an incremental decrease in morbidity and mortality (Palella).

 

HAART requires great diligence, attention and tolerance on the part of the patient, as some regimens

may exceed 20 pills per day and may require two to three doses daily. Timing and dietary requirements,

which must be observed to the letter, are critical to ensure absorption and steady blood

levels.

 

Other concerns about the impact of ART include severe side effects, need for hydration, refrigeration

and storage. The side effects can range from mild to life threatening, and may cause many interactions,

requiring monitoring and evaluation of HIV viral load and CD4 count every three to four

months. These factors may decrease quality of life for patients (Carpenter) and may prompt them to

discontinue therapy.

 

Treatment Failure

 

Drug treatment failure is defined as the confirmed detection of plasma HIV virus after initial suppression

to undetectable levels, a persistent decrease in CD4 count, or clinical deterioration and the

emergence of symptoms. Failure can be caused by primary or cross-viral resistance, development of

secondary viral resistance, poor absorption of medications, altered metabolism, multi-drug pharmacokinetics, and nonadherence (Carpenter). The latter is considered the main reason for drug failure

and subsequent viral resistance (Sande).

 

Resistance

 

Resistance to individual antiretroviral agents is a major concern, as already limited treatment options

may be reduced even more if the patient fails treatment. Resistance can be caused by the selection

and transmission of resistant variants; by poor absorption, altered metabolism, poor potency

and protein binding of antiretroviral medications; or by altered host immune function (Mellors).

Once the virus has become resistant to a particular antiretroviral drug, it may not sustain viral suppression

(Katzenstein).

 

Cross-resistance - the resistance to more than one antiretroviral medications - means that once a

patient fails on a particular agent, the efficacy of others may also be limited in the future (Gallant).

This is the case among the three approved drugs of the non-nucleoside reverse transcriptase inhibitors

(NNRTI) class and, to a certain degree, protease inhibitors (Gallant). Cross-resistance can also

impact the effectiveness of drugs in different classes. One study demonstrated that nonadherence to

Didanosine, used in a triple-combination with Zidovudine (AZT) and Nevirapine, resulted in resistance

to both Zidovudine and Nevirapine (Montaner).

 

Combinations without Protease Inhibitors

 

Due to concerns about resistance, practitioners and patients may occasionally opt to emphasize delay

in the use of protease inhibitors while still seeking viral suppression. Forty-eight week data from

a trial comparing the combination of AZT, 3TC, and Efavirenz to another combination using a

protease inhibitor, demonstrated a pronounced and sustained benefit; Efavirenz appeared to suppress

the viral load better (Manion). Other such regimens include a ddI, d4T, and hydroxyurea

combination and Abacavir with two other nucleoside reverse transcriptase inhibitors (NRTIs).

 

Both combinations have been found to be much more effective and sustainable than dual NRTI

 


27

regimens (Gallant; Montaner). The second combination is especially attractive because it involves

only one 300 mg tablet of Abacavir twice a day plus one Combivir (AZT/3TC) tablet twice a day. A

study of this combination has shown that 71% of those on this regimen had undetectable viral loads

at 48 weeks (Fischl).

 

Other protease-sparing regimens are also attractive because of their simplicity, such as Nevirapine,

ddI and d4T; all of these drugs are taken once a day. This combination was recently tested on eight

treatment-naive individuals with some success at 22 weeks (Pell).

 

Access

 

Because resistance to antiretroviral therapy is such a critical issue, it is essential that individuals begin

therapy and continue treatment once begun. Access to ART is hampered by lack of insurance

(Shapiro; Graham), which limits access to protease inhibitors (Hecht; Celentano; Sorville) and AZT

(Solomon). The attitudes, beliefs and prejudice of some providers toward homeless individuals may

prevent them from prescribing HAART. Research demonstrates that African-Americans are less

likely to receive protease inhibitors (Hecht; Stone; Sorville) or any ART (Moore; Graham; Solomon).

Active illicit drug use (Celentano), lack of enrollment in treatment programs (Strathdee;

Solomon) and lack of continuity of care (Celentano) also influence whether an individual will receive

ART.

 

It is unclear whether homeless persons are refusing ART, whether it is not being offered to them

(Sontag), or whether they are not taking prescribed medications when evaluated.

  • A national survey found that only 17% of homeless individuals were taking ART, compared to 51% of housed individuals (Lieberman).

  • In San Francisco, only 7% of homeless patients were on combination therapy at baseline (Bangsberg).

  • In Baltimore, only 8.8% of homeless injection drug users were taking combination therapy (Celentano).

  • In New York City, only 19% of HIV-infected homeless persons were taking AZT when it was the only drug available (Torres).

  • In Worcester, Massachusetts, only 63% of HIV-positive individuals experiencing homelessness were prescribed AZT (Rapaport).

OI prophylaxis is an inexpensive method of preventing illness and death that can also provide a

means of evaluating and reinforcing patient adherence patterns before prescribing ART. Although it

is not uniformly difficult for homeless patients to obtain OI prophylaxis, access barriers remain for

some patients because not all providers are prescribing these medications as frequently as they

should. For example, a Boston study showed that only 82% of homeless individuals were receiving

PCP prophylaxis (Lebow). Access to PCP prophylaxis is particularly limited for African-Americans

(Solomon; Moore; Easterbrook) and current injection drug users (Solomon).

 

Poor self-esteem and lack of desire for wellness may also impede access to HAART and influence

treatment effectiveness. Some homeless people appear to have lost the capacity to care because of

the systematic stigmatization and rejection they experience. Confidentiality may be hard to maintain

because homeless individuals must spend so much time in public and crowded spaces where it is difficult

to conceal medications and medical appointments.

 


28

B. Recommendations

 

Clinical Recommendations

 

1. Standards of care. Homeless people should be treated with ART according to current guidelines,

which provide for broad discretion but do not warrant denial of medications to individuals

who desire them.

2. Patient education. Before initiating therapy, providers must educate patients on the following

aspects of ART:

  • Objectives and principles of antiretroviral therapy;

  • Difficulties, challenges, side effects, and intrusiveness;

  • Resistance, need for adherence, and the potential to lose treatment options;

  • Harm reduction with nonadherence (e.g., not supplementing therapy with antiretrovirals borrowed or purchased from others, and stopping all medications if the patient wants or needs to stop ART).

3. Access barriers. Providers should explore and address possible barriers to obtaining ART their

patients may face, including:

  • Lack of insurance or ADAP coverage,

  • Lack of financial resources,

  • Subsistence and transportation needs,

  • Caregiver needs,

  • Incarceration,

  • Mistrust of medical institutions or treatment, and

  • Confidentiality concerns.

4. Engagement. Successful HIV/AIDS care requires taking the time to develop a trusting relationship

with patients; fostering a relationship prior to offering ART is necessary for patient acceptance

of treatment.

 

Public Policy Recommendations

 

1. Formulary guidelines. National or state formulary guidelines should be developed to allow for

increased use of antiretroviral therapy by uninsured individuals.

2. Medicaid coverage for persons with asymptomatic HIV infection. In many states, unless a

person with HIV is eligible for welfare or supplemental security income (SSI), or is a pregnant

woman or a child, he or she is not eligible for Medicaid, no matter how low the individual's income

may be. Currently, a person with asymptomatic HIV infection does not meet the SSI standard

of disability, according to which a person must have a manifest symptom of HIV-infection

to qualify for Medicaid coverage (Westmoreland). Low-income homeless persons with HIV infection

who do not fit into another Medicaid eligibility category often have no access to medical

care that could prevent the onset of opportunistic illness or further deterioration of their immune

system. Ironically, such persons become eligible for preventative care only after they have

developed OIs or full-blown AIDS. Such a policy is unwarranted from several points of view -

ethical, financial and epidemiological. Federal Medicaid eligibility criteria should be broadened

to include all persons with HIV infection.

 


29

3. Increased coverage for HIV specialty care. Sufficient public funding should be provided to

make antiretroviral therapy accessible to all persons living with HIV/AIDS, regardless of their

housing or insurance status. There should be state-by-state increases in ADAP coverage for

antiretroviral medications. Additional funding is also needed for specialized programs, such as

Health Care for the Homeless, the Ryan White Care Act, and Special Projects of National Significance,

which promote outreach and multidisciplinary work with HIV-infected homeless persons.

 


30

VII. ADHERENCE

 

Pierre is a 32-year-old man living on the streets, ...referred to our clinic from our mobile

van after requesting an HIV test. He spoke little English, having come from Haiti

three years previously. ... He had had no medical care since his arrival in this country.

...[Because] he often seemed distracted, ... I thought he had psychiatric difficulties.

This belief and his lack of a stable situation - no housing, no support from any friends

or family - made me reluctant to test. ... On examination, he had a growth - 3 - 4

cm. in diameter, irregular, rough, erythematous, with purulence - on the glans of his

penis. I urged him to go to our emergency room, but all he wanted was the HIV test. I

referred him for an evaluation of the growth, which I felt was a cancer that had become

infected. As we awaited the escort, the patient disappeared. I thought we would

not see again.

 

Pierre returned to the shelter one week later. I asked if he had gone to the hospital. He

said he had not. He was afraid because he was undocumented in this country and did

not speak English. He asked again to be tested for HIV. ... I did pre-test counseling,

drew blood and ... asked him to go to the emergency room to take care of the lesion....

I received the HIV test results a week and a half later. He did have antibodies to HIV.

I had second thoughts about what I had done. Two weeks after the blood test, Pierre

came to the clinic and I gave him the results. He said he thought he would be positive.

We spoke at length. ... To my surprise, he showed me a bottle of antibiotics he had

obtained in the emergency room. He had kept his part of our bargain.... Pierre is now

with us in the clinic receiving care.

-Elizabeth Lutas, M.D., New York, NY

 

A. Background

 

One of the most controversial issues to be addressed when providing care for homeless individuals is

patient adherence to prescribed treatment. To avoid building resistance to antiretroviral drugs, it is

essential for persons living with HIV to take their medication exactly as prescribed. Individuals who

take their medications according to instructions are much more likely to control their disease than

those who do not. Because failure to take all medications as prescribed may cause the virus to become

resistent to one or more antiretroviral drugs, it is essential for patients to adhere strictly to

their treatment regimens.

 

An 80% adherence level, considered effective for other conditions, is not sufficient for antiretroviral

therapy (Sackett). Even brief drug holidays can lead to the loss of viral suppression and the development

of resistance (Gallant; Katzenstein). In a recent study, 81% of patients demonstrating

greater than 95% adherence had complete viral suppression, compared to only 64% of those demonstrating

90% - 95% adherence (Paterson). Nonadherence rates of 40% - 50%, reported in studies of

hypertension, asthma, psychiatric and antibiotic therapy, may not bode well for adherence to

antiretroviral HIV/AIDS therapy (Sherer; Lerner; Sackett; Eraker; Stephenson). Studies of nonadherence

have consistently shown that the problem is widespread, regardless of condition or population

examined, and cannot reliably be predicted on the basis of patient characteristics (Lerner).

 

The controversy about whether or not to prescribe antiretroviral therapy to homeless persons reflects

physicians' concerns that homeless individuals may begin treatment and, if unable to carry it

out, will develop resistance to the drugs. This would limit their present and future treatment op-

 


31

tions. Nevertheless, there are no absolute contraindications for ART or justifications to withhold

therapy from those individuals who desire it. The decision about which treatment options to use is

subject to physician and patient discretion. Physicians must assess each individual's likelihood to

adhere to treatment, and based on that assessment, decide what, if any, medications to prescribe.

 

Adherence Assessment

 

Data collection from various sources may be helpful to physicians in assessing patient adherence to

treatment. Measurement may include provider assessment, collateral observation, subject selfassessment

through interviews and monitoring, pill counts, electronic bottle monitors (MEMS caps),

and biological markers (Katzenstein; Blackwell; Levine). Recent reports have demonstrated that

provider assessment alone may be no better than chance (Gilbert), that self-reporting results in

over-estimation of ART adherence compared to more "objective" measures (Bangsberg; Golin), and

that providers may overestimate HAART adherence in their patients (Miller). Use of multiple

measurement techniques to assess adherence may therefore achieve more realistic results.

An observational study from San Francisco showed that 56% of homeless people were adherent to

ART 75% - 85% of the time (Bangsberg). In Boston, 52% of 30 patients on triple therapy were able

to achieve undetectable HIV viral loads (Lebow), and researchers in New York found that 71% of

homeless participants on AZT claimed adherence (Torres). Nevertheless, studies in other populations

report high rates of non-adherence: 64% (Chesney), 64% (Hecht), 67% (Samet), 42.3%

(Muma), 63% (Singh), 62% (Mostashari), and 49% (Eldred).

 

Reasons for Nonadherence

 

Some of the most common reasons given by patients for missing doses of medication are:

  • Forgetting (Chesney; Ohmit);

  • Side effects (Samet; Broers; Ohmit);

  • Sleeping through dose (Chesney);

  • Change in routine (Chesney);

  • Feeling better (Ohmit; Richter); and

  • Fear of medications (Ohmit; Richter).

Other factors that may affect adherence include mental health and depression (Chesney; Singh),

stress (Chesney), the need for psychiatric evaluation (Ferrando), age (Chesney), problems taking

medications (Muma) and skepticism about them (Muma). Race is predictive of non-adherence

(Singh; Muma; Ohmit), but it may be a surrogate for literacy with respect to ART adherence

(Sipler). The most important considerations cited by clinicians in deciding whether to prescribe

ART are active substance abuse (78%), access to regular food and water (70%), side effects (69%),

active mental illness (64%), and housing status (54%) (HCH Clinicians' Network).

 

Maximizing Adherence

 

The following factors have been shown to increase adherence:

  • Close relationship with a provider (Mostashari; Stone),

  • Close peer relationships (Mostashari),

  • Reduced pill frequency (Eldred),

  • Fitting the pill regimen into daily routine (Wenger),


32

  • Knowledge of ART action (Eldred),

  • Perceived ability to take medications (Eldred; Stone),

  • Patient belief that medications are helpful or prolong life (Eldred; Samet),

  • Use of a medication timer (Samet).

The development of a constructive provider-patient relationship is essential to successful antiretroviral

therapy. Cultural competence of service providers is key in improving patient adherence to

treatment. Education of non-medical service providers in the basic principles of ART can also help

to promote adherence. Finally, service linkages and better communication between health care

providers and other community venues where homeless people congregate facilitate patient followup

and assessment of ART aherence.

 

Public Health Considerations

 

The quality of life for homeless people may improve while they are taking ART, regardless of viral or

immunologic response (Castello-Branco). Other health benefits of treating homeless individuals

include the possibility of reducing the risk of HIV-1 transmission by decreasing the amount of virus

transmitted during exposure (Wainberg). Even partially successful therapy can reduce blood and

genital secretion of the virus, at least theoretically resulting in diminished risk of HIV transmission

(Wainberg). Studies have also shown that even drug resistant viral strains may have impaired replication

competency (Goudsmit; Louder) and decreased transmissibility (Wahlberg).

 

The main public health concern is the possible increase of resistant strains of HIV-1 through sexual

intercourse (Imrie; Conlon), injection drug use (de Ronde) and perinatal transmission - to the fetus

in utero or to the infant during breastfeeding (Colgrove). Transmission of HIV-1 variants resistant

to Lamivudine (Conway), Nevirapine (Imrie) and protease inhibitors (Wainberg) has also been

demonstrated. A recent study detected transmission of a viral strain that is resistant to multiple

medications, including protease inhibitors and NRTIs, from one host to another (Hecht).

 

B. Recommendations

 

Clinical Recommendations

 

1. Provider education. All medical and non-medial homeless service providers should be educated

about the basic principles of antiretroviral therapy and adherence promotion, including

cultural sensitivity.

2. Commencement of ART. While it is preferable to maximize stability before initiating ART,

instability is not sufficient cause to deny treatment.

3. Co-management of ART. Medical providers should consider co-management of antiretroviral

therapy with other service providers, including case managers, substance abuse and mental

health counselors, infectious disease specialists, shelter providers and parole officers.

4. Identification of adherence barriers. Providers should aggressively identify barriers to adherence,

listed below, and seek to ameliorate them.

  • Mistrust of health care, including institutions and medications

  • Lack of patient understanding of HIV/AIDS care and ART

  • Unmet subsistence needs including food, water, housing and bathroom facilities

  • Transportation needs

  • Caregiver responsibilities and needs

  • Lack of storage facilities for medications


33

  • Loss or theft of medications

  • Inability to carry medications or limited access to them

  • Confidentiality concerns

  • Lack of peer or family support

  • Lack of fixed, dependable daily routine

  • Dependence on the schedule of others

  • Medication side effects

  • Active substance abuse

  • Mental illness and/or depression

5. Adherence promotion. Providers should facilitate patient adherence to ART through the following:

  • Tailor the treatment regimen to the patient's lifestyle;

  • Plan ahead for changes in routine;

  • Simplify medication regimens and preserve low frequency of dosing (BID);

  • Use organizational aids such as timer watches and pillboxes;

  • Enlist peers to reinforce and support adherence;

  • Recruit family members to lend support;

  • Institute or refer patients to day or night programs, depending on their scheduling needs;

  • Provide on-call service or triage by personnel with a working knowledge of ART;

  • Be available during evening and weekend hours;

  • Develop on-site food pantry, emergency meal or meal voucher programs;

  • Provide water fountain or bottled water on-site;

  • Provide medications on-site and institute on-site medication storage program;

  • Provide childcare at clinics; and

  • Identify housing options.

5. Incentives for treatment. Providers should consider the use of monetary or other incentives to

improve attendance to follow-up visits and ART success.

6. Aggressive outreach. Outreach teams and personnel should be employed to:

  • Increase follow-up visits by providing reminders and transportation;

  • Identify and address barriers to adherence at various locations and facilities;

  • Conduct pill counts and adherence evaluations;

  • Reinforce treatment goals and the need for adherence;

  • Provide medications to individuals who may run out; and

  • Provide food or water.

7. Adherence assessment. Providers should evaluate their patients' history of adherence with

other medications. Once ART is begun, providers should do adherence assessments at every

clinical visit and provide the means to increase adherence.

 

Public Policy Recommendations

 

1. Provider education. Mainstream providers should be educated about identifying homeless patients

and addressing their unique treatment needs.

2. Service linkages. All jurisdictions should encourage linkages among health care facilities, service

providers and correctional institutions.

 


34

VIII. RESEARCH

 

M. A. is a 45-year-old woman with a history of HIV disease, ... depression, hepatitis C, a

long-standing narcotic addiction, amenorrhea, [and] chronic low-back pain ... status postlaminectomy.

...She had applied for SSI, but was declined; she is now appealing. She is a

sex worker and receives general assistance. She has two children, six and seven years old,

who are in foster care. Shortly after she found out that she was HIV positive, M. A. came

to the clinic to establish primary care for her HIV disease. At that time she had no specific

complaints, but was interested in methadone maintenance treatment for her narcotic

addiction. Her viral load was about 46,000, and her initial CD4 count was 576. ... It

quickly became obvious that she was unable to commit to therapy. She seemed distracted

by a number of needs; for example, she needed a letter for her SSI application, and she

needed another letter in order to receive methadone maintenance. She did not have stable

housing, and she had so many other priorities that taking medication on a regular basis

was not one of them. ... When I saw her most recently, however, M. A. expressed interest

in HIV treatment, feeling that if she does not get treatment she will die, and she is

not ready to die. I prescribed Combivir and Nevirapine, hoping to get her started without

using protease inhibitors. I am uncertain that M. A. is able to adhere, so I am retaining

the possibility of using protease inhibitors in the future.

-Karen Bayle, M.D., San Francisco, California

 

A. Background

 

The research literature on HIV/AIDS and homelessness, though sparse, clearly identifies barriers to

prevention, health care access and treatment faced by homeless people living with HIV, and points

to a number of areas where more investigation is needed. More targeted studies employing standardized

methodologies are needed to form a scientific basis for the development of successful

HIV/AIDS prevention and treatment strategies for people who lack stable housing. Such research is

warranted by the preliminary evidence, reported here, that HIV/AIDS has a disproportionate effect

on particular homeless subpopulations, and that HIV-infected, housed persons are at increased risk

of becoming homeless. Failure to measure the scope of HIV/AIDS within the homeless population

and to develop well-tested prevention and treatment strategies is likely to exacerbate the serious

public health problem which the human immunodeficiency virus and its devastating sequelae already

present.

 

Relatively few clinical or epidemiological data exist on HIV prevention and treatment for homeless

individuals, in part because of limited resources to study medical conditions in this population. At

the same time, there is a great need for behavioral and clinical research on particular homeless subgroups,

to form a scientific basis for the development of successful prevention strategies and treatment

protocols. Finally, there is a need for policy research to further document and address system

barriers to HIV prevention and care for homeless people.

 

Needs Assessment

 

The current standard of care for HIV prevention and risk reduction requires a needs assessment of

targeted populations and the tailoring of interventions to the populations' demonstrated needs.

Needs assessments of particular homeless populations should specify barriers to HIV prevention and

services experienced by different cultural and linguistic groups in different geographical areas.

 


35

Priorities

 

Additional research is needed to develop and test strategies to decrease HIV transmission among

homeless persons, and to identify those who are infected for treatment. Research to identify individual

characteristics that may increase adherence to antiretroviral therapy is also essential. Absent

objective data, clinicians must rely on their own subjective perceptions in deciding whether to prescribe

ART. Given their poor track record in predicting patient adherence (Gilbert), there may be

better ways to select patients for and encourage their adherence to treatment.

 

B. Recommendations

 

Epidemiology

  • General. Better characterization of the extent of HIV/AIDS among homeless people, and of the extent of homelessness among persons with HIV/AIDS.

  • Specific. Better characterization of the extent of HIV/AIDS in various subpopulations - e.g., rural populations, homeless women, transgendered individuals, etc. Determine the incidence, prevalence and natural history of HIV/AIDS within these subpopulations.

Behavioral Research

  • Behavioral change. Develop better methodologies to evaluate behavioral change in people without stable homes.

  • HIV prevention. Investigate high-risk behaviors. Develop and implement HIV prevention strategies for homeless men and women in targeted subpopulations.

  • Testing, notification and adherence. Identify barriers for homeless persons to HIV testing and counseling, notification of test results and treatment. Develop and test interventions that improve rates of HIV testing, notification and adherence to treatment.

  • ART. Identify effective ways to reduce barriers to antiretroviral therapy for homeless people and to increase ART utilization.

Clinical Research

  • Co-morbidities and nutritional deficiencies. Measure the impact of co-morbidities and nutritional deficiencies on HIV/AIDS progression.

  • Immunization rates. Quantify immunization rates for homeless people with HIV/AIDS, including completion rates for hepatitis B immunizations. Design and evaluate interventions to increase immunization rates.

  • Outcomes. Determine the outcomes of antiretroviral therapy among homeless people.

Policy Research

  • Impact of health coverage. Determine the effect of Medicaid enrollment on homeless peoples' access to care and health status.

  • Health care access. Describe system barriers to health care access for particular homeless subpopulations.

Based on these data, develop strategies to increase access to comprehensive health

 


36

care for all homeless people.

 

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Appendix II - CASE HISTORIES

 

1.

 

Pierre is a 32-year-old man living on the streets. He was referred to our clinic from our mobile van

after requesting an HIV test. He spoke little English, having come from Haiti three years previously.

Our HIV counselor spoke only English, so he was referred to me because of my fluency in French. He

had had no medical care since his arrival in this country. When speaking with him, he often seemed

distracted, with wandering thoughts. I thought he had psychiatric difficulties. This belief and his lack

of a stable situation - no housing, no support from any friends or family - made me reluctant to test.

When I asked if there were any reasons why he thought he might have HIV, he said he had something

on his penis. On examination, he had a growth - 3 - 4 cm. in diameter, irregular, rough, erythematous,

with purulence - on the glans of his penis. I urged him to go to our emergency room, but

all he wanted was the HIV test. I referred him for an evaluation of the growth, which I felt was a

cancer that had become infected. As we awaited the escort, the patient disappeared. I thought we

would not see again.

 

Pierre returned to the shelter one week later. I asked if he had gone to the hospital. He said he had

not. He was afraid because he was undocumented in this country and did not speak English. He

asked again to be tested for HIV. I felt reassured that he had returned exactly one week after his first

visit, knowing it was the day I was there. We had made a connection. He was coherent, not at all

distracted, and he responded appropriately to questions of what his reaction would be, were he to

have a positive test result. I did pre-test counseling, drew blood and requested that he do something

for me in return. I asked him to go to the emergency room to take care of the lesion on his penis. I

prepared the referral papers and gave them to him.

 

I received the HIV test results a week-and-a-half later. He did have antibodies to HIV. I had second

thoughts about what I had done. Two weeks after the blood test, Pierre came to the clinic and I gave

him the results. He said he thought he would be positive. We spoke at length. He wanted to do the

complete initial work-up, which we did. To my surprise, he showed me a bottle of antibiotics he had

obtained in the emergency room. He had kept his part of our bargain and had gone to the hospital,

received antibiotics and been given an appointment to the urology clinic for a biopsy. Pierre is now

with us in the clinic receiving care.

 

Elizabeth Lutas, M.D.

St. Vincent's Hospital & Medical Center

Department of Community Medicine

New York, NY

November 1998

 

2.

 

Samuel is a 32-year-old man who entered our therapeutic community for alcohol abuse treatment.

He had tested positive for HIV two years previously. He had had no illnesses related to HIV, and he

had received no care for his infection. His initial physical examination was normal except for periph-

 


53

eral generalized lymphadenopathy. Blood work was remarkable for a CD4 count of 410 and a viral

load of 130,000. An antiretroviral regimen of AZT, Epivir and Viracept was prescribed. It was

stressed that Viracept had to be taken on a full stomach.

 

We saw the patient two weeks later and-among other things-reminded him to take Viracept after

a full meal. He told us he was doing so, with the exception of Saturday and Sunday mornings. The

shelter in which the therapeutic community was located served three meals on weekdays, but on

weekends served only two meals a day - brunch (at noon) and dinner (in the evening). So on Saturdays

and Sundays, Samuel took his morning Viracept on an empty stomach.

 

The problem was solved when I spoke to the shelter staff and explained the need for the morning

meal. A list of HIV-positive patients was provided for the kitchen staff and these individuals now are

served breakfast early Saturday and Sunday mornings in addition to the brunch and dinner meals.

 

Elizabeth Lutas, M.D.

St. Vincent's Hospital & Medical Center

Department of Community Medicine

New York, NY

November 1998

 

3.

 

John is a 36-year-old man who has known about his HIV infection for five years. He had had one episode

of pneumocystis carinii pneumonia two years previously. His CD4 count had fallen below 100

one year prior to our meeting him. He had a negative PPD and was anergic several months before.

His physician at that time had begun isoniazid and pyroxidine to prevent active tuberculosis.

He was thus on a complicated medical regimen, receiving Crixivan every eight hours, Zerit twice

daily, Epivir twice daily, as well as Bactrim, Zithromax, Isoniazid, Pyridoxine, folic acid and vitamins.

The policy of the shelter in which John lived was for the shelter to keep the patients' medications.

The patients would come to the shelter to get their medications twice a day, once in the morning and

once in the evening. The times of the medication call varied from day to day. John was thus having

difficulty adhering with his medical regimen, especially the Crixivan. On occasion, John informed us,

the evening medication call was forgotten.

 

When we learned about this situation, I asked to meet with the shelter director. I explained to him

our patients' needs, such as the need to take medications at specific times, the need to take medications

more than twice a day, and so on. The shelter director agreed to allow our patients to keep their

medications so that they could follow their medical regimen as closely as possible.

 

Elizabeth Lutas, M.D.

St. Vincent's Hospital & Medical Center

Department of Community Medicine

New York, NY

November 1998

 


54

4.

 

Michael is a 49-year-old man who had worked as a nurse. He had cared for his partner who had died

from AIDS. Michael was tested and found to be positive for the HIV antibody. As the infection progressed,

Michael suffered from venereal warts, recurrent herpes infections, pneumonia and CMV infection

of his gastrointestinal tract. He became so fatigued and weakened that he was forced to leave

work. He soon became homeless and came to New York City, where he sought shelter at our drop-in

center.

 

Physical examination revealed a thin man, with herpes simplex lesions around his mouth and anus

and venereal warts on his penis. He also had peripheral generalized lymphadenopathy. His CD4

count at this initial encounter was 148, essentially unchanged from his previous reported CD4 count

of 150.

 

He was taking medications which included Norvir, Invirase, Rescriptor, Zovirax, Bactrin and vitamins.

The Invirase was being given in the form of soft gel-caps, which needed to be refrigerated. This

shelter staff dispensed medications to the patients. We created a space in the refrigerator for the Invirase

gel-caps and instructed the staff that this medicine would be kept there. This action led to general

education of the shelter staff about antiretroviral medications - when they should be taken; how

they should be stored; etc.

 

Elizabeth Lutas, M.D.

St. Vincent's Hospital & Medical Center

Department of Community Medicine

New York, NY

November 1998

 

5.

 

S. A. was 21 years old when I met her in March 1997. She was brought to our urgent care clinic by

an outreach worker who told me that S. A. only spoke Spanish and was recently released from jail for

prostitution. She was at the time in one of the city shelters, where our medical and social services

staff had established a satellite clinic. S. A. is a transgender male to female, who tested HIV-positive

a year before. She was rejected by her family in Mexico and came to the U. S. two years ago with a

boyfriend.

 

Shortly after arriving in the States, S. A. was alone and depending on sex work for income. She had

multiple sexual encounters without protection, at her clients' request. She was smoking methamphetamines

and using injectable estrogens as frequently as she could to keep her feminine characteristics.

At the time of her first visit, she was complaining of rectal pain and bleeding. On physical

exam, there was a large condyloma in her rectum needing surgical removal. Our social work team

was able to place her with the Bridge Project, a special grant program that provides housing and ancillary

services to HIV-positive patients with dual diagnosis.

 

Being housed and in a more stable situation -- and seeing social and nursing staff on a regular basis --

S. A. successfully recovered from rectal surgery. She kept her regular follow-up appointments with

 


55

me. Initially, her viral load was 350,000 and her CD4 count 73. I was concerned about when to start

antiretroviral treatment. It took time for me and the clinic staff to educate S. A. about AIDS and the

possible consequences. Fortunately, besides her rectal problem, she had not experienced any opportunistic

infections. I prescribed oral estrogens, so that she did not have to buy unpredictable doses of

IM estrogens. Along with the estrogens, S. A. developed the habit of taking prophylactic medication

and vitamin supplements. She also continued smoking speed, however, assuring me that her use was

limited and that she always remembered to take her medication, even under the influence. She

started to receive general assistance money, but was still doing sex work. I review safe sex practices

during each visit.

 

In October 1997, almost six months after her initial visit and frequent subsequent visits, I felt comfortable

and eager to start ART. S. A. was very young, and, during that six months, her CD4 had

dropped to 23. She started on AZT/3TC and Nelfinavir. The regimen caused her only minimal diarrhea,

and after a month her viral load was 16,000 and her CD4 doubled. These results were encouraging,

but after three months, her viral load was again over 300,000. S. A. disclosed to me that she

had stopped the Nelfinavir after the first month because there were too many pills, and that very

rarely would she take the 3TC or AZT.

 

I told her to not take any of the medications; she was very relieved. She continued taking Septra and

other medications, however. I felt responsible for this failed attempt, thinking my message did not get

through. I had interpreted the patient's agreement to treatment as something that she wanted, not as

something she agreed to do to please me.

 

Her CD4 count continued to decrease. When it reached 10, I wanted to begin therapy again. With

the assistance of the Bridge Project physician and other staff, we amplified the message of the importance

of being on therapy. Since May 1998, her viral load has been undetectable and her last CD4

was 240. I keep frequent visits with her. In the past few months, S. A. has enrolled in an English

class, and she has gained 24 pounds.

 

There are still many obstacles, however. The Bridge Project housing is limited to 18 months, and her

legal status in the country is questionable. S. A. may be able to apply for asylum due to her transgenderism

and possible life-threatening situations in Mexico if she returns, but she may be deported if

the application is not accepted. She cannot apply for SSI, and her educational and vocational alternatives

are almost nonexistent at this moment. Many of S.A.'s circumstances are beyond the abilities

of our clinical team, but she is receiving life-saving treatment and her quality of life has improved

significantly under our care. She is well engaged with our clinic and medically, she is fine.

 

The other day, S. A. told me that she wants to think about herself and work for herself. I asked her if

she could say this a year ago. She answered no - a year ago she did not care about herself. I look at

this young person, who is smiling, growing, and developing self-esteem in spite of the many, very difficult

obstacles in her life. I can only feel the deepest respect for her, and I realize how much this patient

is teaching me. I tell her how great it is to be her physician.

 

Linette Martinez, M.D.

 


56

Tom Waddell Clinic, Community Health Network of San Francisco

San Francisco, CA

December 1998

 

6.

 

D. W. is a 30-year-old female I first met in our urgent care clinic in August 1997. She had been seen

three times in urgent care in 1997 for various issues, but it was not until June 1997 that she was diagnosed

as HIV-positive as part of the REACH project, a University of California-San Francisco study

of HIV among homeless people in San Francisco.

 

On July 31, 1997, D. W. came to our urgent care clinic with a dry cough, fever and oxygen desaturation

to 91% with exertion. She was hospitalized for PCP, and I met her just after she was discharged

from the hospital on August 18. At that time she felt fine, stating that she had completed her full

course of Septra. She insisted that she wanted to start antiretroviral treatment. At that time, she was

housed via the AIDS Foundation and accompanied to the clinic by her HIV-negative boyfriend T.

R., who seemed very supportive. She admitted to crack use, but said that both she and T. R. had

been clean and sober for two weeks. On July 22, her viral load had been greater than 800,000 and

her CD4 count was187. We talked about her boyfriend's seronegative status, and stressed the importance

of using condoms.

 

On this first visit, I did something I probably would not do now: I wrote a prescription for Zerit,

Epivir and Viracept. We discussed the necessity of adherence and possible side effects. For some reason,

I sensed that D. W. was committed to sticking with therapy. I arranged a follow-up visit with me

at the HIV clinic.

 

The next time I heard from D. W., however, she was in the hospital. She had gone to the emergency

room due to a rectal tear and was complaining of sweats. It turned out that she had only received an

eight-day course of Septra for her PCP. She was thus started on a 21-day course and given Acyclovir

for probable rectal HSV. I saw her after her discharge on August 29, and she was again doing fairly

well. By September 17, D. W.'s viral load was 3,286 and her CD4 count 221, which was very good

news for both of us and proof that she was adhering to the antiretroviral regimen. My notes from

October 15, however, state "back on meds" so I know that there was at least one interruption. She

was found to be PPD positive in October, and she started taking INH. By October 29, her viral load

was undetectable and her CD4 count had risen to 446.

 

On December 10, D.W. informed me that she was pregnant. This had been discovered as part of the

Partner's Project, a study of HIV-positive patients and their seronegative partners. D. W. and T. R.

had discussed the issue of having children previously, and they wanted to have a child. I had told

them the risks involved, and I am certain that I conveyed my opinion that it might not be a good

idea. D. W. had had ten prior pregnancies and three prior children. She and T. R. were fairly sure

that they wanted to keep this child. After several appointment reschedulings, D. W. went to

BAPAC, the Bay Area clinic for HIV-positive prenatal care. She had her first appointment January

13, 1998. BAPAC followed her throughout the pregnancy, keeping her on the same antiretroviral

regimen, Septra, and INH. On February 10, she had an undetectable viral load and a CD4 count of

 


57

457. In June 1998, D. W. delivered a healthy HIV-negative baby girl, who is now living with T. R.'s

sister in Oakland. D. W. and the baby received peripartum AZT. D. W. also had a tubal ligation.

I did not see D. W. again until September 14, when she came to urgent care with pharyngitis. She

was using crack again. As of September 30, she was off antiretroviral therapy with a CD4 count of

350 and viral load of 40,000. On November 14, she came to my HIV clinic and wanted to restart triple

therapy, which I agreed to. D. W. and T. R. are still together. T. R. is living in a clean and sober

post-detox residential facility and D. W. is on a waiting list for permanent supportive housing. D. W.

and T. R. visit their daughter several times a week.

 

Alisa Oberschelp, M.D.

Tom Waddell Clinic, Community Health Network of San Francisco

San Francisco, CA

December 1998

 

7.

 

L. T. is an HIV-positive person without a home. He is 43-years-old with a history of long-term

homelessness, and he has been HIV-positive since 1984. He is a Vietnam veteran and carries a diagnosis

of PTSD and schizophrenia. He came to the Tom Waddell Clinic after being banned from

other clinics for exhibiting threatening and violent behavior. L. T. complained of chronic back pain

and had been on opioid analgesis intermittently. He had been seen by a psychiatrist and treated with

antipsychotics and benzodiazepines. His drug of choice is methamphetamine, which he is trying to

stop using.

 

We first started seeing L. T. in 1995. At that time he was coming to our urgent care site; later he engaged

with a primary care physician who began to treat his HIV disease and pain. He saw the psychiatrist

at the clinic, who restarted his antipsychotic medications. For most of that time, L. T. was

homeless and on the street. He received SSI and VA benefits, but the money always seemed to escape

him.

 

L. T. spent his most of his time pushing a cart, recycling. He would search dumpsters, seeking

plumbing supplies or other things to sell. Often, we have the perception that individuals who are

homeless do not work hard. L. T. works harder than most people do. Many of his crises have occurred

after an injury which prevents him from working - prevents him from collecting things, from

walking many miles a day, from pushing around 50 - 100 pounds in his cart.

 

In 1997, L. T. started antiretroviral medications, taking them for about six months. During that time

he was housed in a single residence hotel. When he became homeless again, however, he told me

that he knew that he would not be able to take his medications as prescribed, and he did not want to

take them for fear of resistance. For the last year, L. T. has been homeless and not on therapy. His

CD4 count fell to 250 and his viral load was over 300,000. He is aware that he may be in trouble

medically.

 

Recently, however, he has been engaged in a new project called TLC. TLC has more community

services, and nurses and other health care workers are able to check with patients almost on a daily

 


58

basis. L. T. has been more adherent with his psychiatric medications and his behavior has been more

stable. In the last month, L. T. secured housing with the help of TLC, and it looks that he will be

able to stay in a residential hotel with support services.

 

We will begin talking about highly active antiretroviral treatment (HAART) soon. L. T. knows that

he is medically ready. Taking a long view, L. T. is doing better now than he was two or three years

ago. He is very well engaged in practice. HAART could save L.T.'s life, but I am able to accept the

fact that HAART may or may not be possible.

 

In the two years that I have been caring for L. T. regularly, the one thing I find most characteristic is

his chaotic ups and downs. He would come to the clinic for a month or two, work with a case manager

and get a housing plan; then he would slip into a pattern of being on the verge of physical violence;

and then transition back into a model patient. To most clinicians in medical practice, this scenario

can be incredibly frustrating. A lot of the chaos has to do with substance abuse. I always ask L.

T. about drug use, and his answer is always "two or three months ago." He can only be honest with us

to a point and then he feels that he must hide the fact that he is using drugs.

 

Barry D. Zevin, M.D.,

Medical Director

Tom Waddell Clinic, Community Health Network of San Francisco

San Francisco, CA

December 1998

 

8.

 

Larry is a 52-year-old black man who was first seen in the Homeless Health Care Center on May 17,

1988. At the time, he was sleeping on the street and in shelters. During 1988, he had eight clinic visits,

mainly to treat multiple episodes of tracheobronchitis and to monitor his blood pressure. His last

visit was on April 5, 1990; at that time he left the clinic without being seen. During the next two

years, Larry visited the clinic intermittently. His use of alcohol and crack was heavy during this time.

On August 2, 1994, he returned to the clinic with a laceration under his right eye; he also informed

the staff that he had been HIV-positive since May. Labs were ordered, but Larry left without having

his blood drawn. He was referred to a caseworker, but he also left without seeing the caseworker. In

September, he finally came back to have his blood drawn; his CD4 count at the time was 480. It

wasn't until February 1995 that he returned to the clinic, and he allowed the provider to complete a

complete physical examination and to send appropriate tests. He also received a flu and pneumoccocal

vaccination as well. But it wasn't until September 1995 that Larry was seen again. During that

time, clinic staff had applied for benefits for Larry and had devoted a considerable amount of energy

attempting to locate him. He was treated for otitis externa and then left the clinic. He wasn't seen

again until the end of the year, when Larry appeared, demanding treatment with AZT. He was

started - after a long discussion about treatment - on AZT as well as MVI and given a return appointment

for the following month.

 

He next returned to clinic at the end of May 1996. Again, the provider spent a long time with him

discussing the need for adherence and the importance of the medication. He left without his full ex-

 


59

amination, and was not seen until August 1997. He had been receiving care at the VA, and brought

in his medications - AZT, Epivir, Phenergan, and Desipramine. The prescriptions were filled. He

next returned in February 1998; he was not taking antiretroviral medications. After a long hospitalization

for multiple problems including esophageal candidiasis, Larry returned next in July 1998. He

now weighed 97 pounds and had been given the diagnosis of advanced AIDS and wasting syndrome.

He again became lost to follow-up until the staff saw his obituary in the newspaper on October 10,

1998 - he had died at the local county nursing home.

 

This was a very difficult case due to the inability to follow this patient on a regular basis and because

of his nonadherence to any care plan. Although he had received repeated education on HIV, medications,

safe sex, and so on, he continued to follow his own plan - which was based on alcohol and

drug use. He had received several detoxification treatments. It is notable that when he was the sickest,

he was sexually active with multiple partners (names unavailable - he couldn't remember - he

didn't even mention he was married.) He did not tell his wife about his HIV status, and we had to

test her and tell her that she was infected with HIV.

 

Ardyce Ridolfo, MSN, FNP, RNC

Homeless Health Care Center

Chattanooga, TN

December 1998

 

9.

 

Miguel, a 28-year-old undocumented Mexican national, first became known to the staff at the Albuquerque

Health Care for the Homeless in 1997. He presented as a well-developed, well-nourished

male whose only complaint was that of pain in his left shoulder, which had been on going for three

months following a blow he had taken during a fight. Within a week, Miguel had a positive PPD of

23mm induration and a positive HIV test. Initial recommendations for TB treatment included INH

therapy for one year, but realistic goals were for ten months.

 

Attempts by HCH staff to provide incentives or motivate Miguel with short-term housing in exchange

for his adherence to the medication proved to be successful only for brief periods of time. At

one point, Miguel was given the opportunity to receive free room and board at a local retreat center

in exchange for yard work. All went well for approximately three weeks until Miguel decided to take

his friends out for a short ride using the center's vehicle without permission. When asked what he

had thought he was doing, he responded by saying he thought he had the trust of the center manager.

Miguel was told he had to leave, and we did not see him until one month later.

 

The local men's shelter was sympathetic to Miguel's physical and social circumstances and also tried

to motivate him with room and board for an indeterminate amount of time in exchange for light yard

work. In time, Miguel complained that he felt confined and eventually left.

 

Miguel learned only a few words in English, but nevertheless proved to be extremely resourceful in

finding work. His desire to send money to his family in Mexico seemed to be his strongest reason for

continuing to live in this country. Over one-and-a-half years, he was deported to Mexico four times;

four times he made his way back. Upon each return, he would appear at HCH physically wasted, in

need of nourishment and rest. Each time, the challenge of finding short-term respite for Miguel was

 


60

renewed.

 

Rachel Marzec, RN

Albuquerque Health Care for the Homeless

Albuquerque, N.M.

January 1999

 

10.

 

M. A. is a 45-year-old woman with a history of HIV disease since May 1997.She also has a history of

depression, hepatitis C, a long-standing narcotic addiction, amenorrhea, chronic low-back pain, is

status post-laminectomy. Originally from Phoenix, Arizona, M.A. is divorced. She had applied for

SSI, but was declined; she is now appealing. She is a sex worker and receives general assistance. She

has two children, six and seven years old, who are in foster care.

 

Shortly after she found out that she was HIV positive, M.A. came to the clinic to establish primary

care for her HIV disease. At that time she had no specific complaints, but was interested in methadone

maintenance treatment for her narcotic addiction. Her viral load was about 46,000, and her

initial CD4 count was 576. I explained the significance of these lab values and asked her how she felt

about taking medications regularly on a long-term basis. It quickly became obvious that she was unable

to commit to therapy. She seemed distracted by a number of needs; for example, she needed a

letter for her SSI application, and she needed another letter in order to receive methadone maintenance.

She did not have stable housing, and she had so many other priorities that taking medication

on a regular basis was not one of them.

 

When I first see patients such as M.A. who has numerous psychosocial problems, I prefer that they

demonstrate that they are able to visit the clinic on a regular basis before I handle a complicated prescription.

The initial visit is used to explain treatment benefits. The patient must show up for a follow-

up appointment, demonstrating that they are really interested and able to comply with therapy.

After I first saw M. A., she did not return to the clinic for about six months. At this subsequent visit,

we discussed methadone detoxification, rechecked some laboratory tests, and scheduled a follow-up

in two weeks. Her lab work showed her viral load had increased to almost 100,000 and her T-cell

count had decreased to 186. I referred M.A. to our case manager to help her keep her appointment.

She did not keep the scheduled appointment, but dropped in on another occasion. She had gonorrhea

and was willing to take Septra for PCP proplylaxis, but she was not ready to take antiretroviral

medications. M.A. reported that she has regular clients who are aware of her serostatus, but they

prefer not to use condoms. According to her, the unprotected sex is consensual.

 

Here is a patient who would clearly benefit from therapy, but cannot make it a priority. When I saw

her most recently, however, M.A. expressed interest in HIV treatment, feeling that if she does not

get treatment she will die, and she is not ready to die. I prescribed Combivir and Nevirapine, hoping

to get her started without using protease inhibitors. I am uncertain that M.A. is able to adhere, so I

am retaining the possibility of using protease inhibitors in the future.

 


61

I think M.A. trusts me and in spite of her chaotic lifestyle, she manages to come in fairly regularly.

M.A. remains overwhelmed with other problems and still uses heroin. She wants to get into substance

abuse treatment, but she is unable to take the first step to do so. She is marginally housed,

living in a SRO. Depression also seems to interfere with her ability to act, so I have added Prozac to

her regimen, hoping it will make a difference. She always has a list of things for me to do for her, and

she relies on me for things I feel she could do for herself. I spend time and energy trying to give her

these things, but she often abuses them to get the services she wants.

 

Karen Bayle, M.D.

Tom Waddell Clinic, Community Health Network of San Francisco

San Francisco, CA

February 1999

 

11.

 

I met Mr. R. in the homeless shelter around 1994. He had been a resident of multiple homeless shelters

in the city as well as up and down the state of California for the past four years. A non-smoker

and non-drinker, Mr. R was generally in good health until August 1990. At that time, he was residing

in the Episcopal Sanctuary Shelter, where he was treated for a fever and cough for six weeks before

being admitted to San Francisco General Hospital. I was doing outreach at the shelter, and found

him in his bed with a fever of 103°F. I took him to the emergency room and stayed with him until he

was admitted.

 

Mr. R. was hospitalized for two days. He had an unremarkable work-up. However, his HIV test returned

positive. Previously, he had mentioned that he had had a negative HIV test, but it turned

out that he had end-stage AIDS. Perhaps, he was in denial.

 

His initial CD4 count was 8, and his viral load was 300,000. His fever turned out to be secondary to

cryptoccocal meningitis and pneumonia. He was treated as an inpatient, then transferred to a longterm

care facility, Laguna Honda Hospital to complete his IV antifungal treatment and for psychosocial

evaluation. After being discharged from Laguna Honda to a SRO hotel, he visited the clinic

three days later. He had another fever, so he was again admitted to the hospital.

Following his transferal back to Laguna Honda, he stayed there for six weeks. His social worker found

housing for him at Lelan's House, a long-term living facility for advanced HIV-positive patients. Finally,

he has stable housing. After the cryptococcal infection was stablized, I started him on antiretroviral

therapy and prophylactic medications. He is on 3TC, D4T, Crixivan and Sustiva. His viral

load is less than 50 and he is doing very well.

 

Chuck Marion, M.D.

Tom Waddell Clinic, Community Health Network of San Francisco

San Francisco, CA

February 1999

 


62

Appendix III - GLOSSARY

 

ADAP AIDS Drug Assistance Program, part of RWCA

AIDS Acquired Immune Deficiency Syndrome

ART Antiretroviral Therapy

BPHC Bureau of Primary Health Care, HRSA

CD4 Blood cells destroyed by HIV during replication; a CD4 count has been used as a

surrogate marker for HIV progression but has been replaced by viral load measurement

in recent years.

CDC Centers for Disease Control and Prevention, HHS

CMV Cytomegalovirus, an opportunistic infection

CPG HIV Prevention Community Planning Group; determines priorities at the state level

for the implementation of HIV prevention activities

HIV Human Immunodeficiency Virus

HAB HIV/AIDS Bureau, HRSA

HAART Highly Active Antiretroviral Therapy

HCHCN Health Care for the Homeless Clinicians' Network

HHS US Department of Health and Human Services

HRSA Health Resources and Services Administration, HHS

IDU Injection or Intravenous drug user

MAC Mycobacterium avium complex, an opportunistic infection

MSA Metropolitan Statistical Area

NHCHC National Health Care for the Homeless Council

NRTI Nucleoside Reverse Transcriptase Inhibitor, a class of antiretroviral drug

NNRTI Non-Nucleoside Reverse Transcriptase Inhibitor, a class of antiretroviral drug

OI Opportunistic Infection

PCP Pneumocystis carinii pneumonia, an opportunistic infection

PI Protease Inhibitor, a class of antiretroviral drug

RWCA Ryan White CARE Act, which provides Federal funding for HIV-related services

STD Sexually Transmitted Disease

TB Tuberculosis

 


63

Appendix IV

 

HCH CLINICIANS' NETWORK HIV/AIDS ADVISORY COMMITTEE

 

John Y. Song, MD, MPH, MAT, Chair

Fellow in General Internal Medicine

The Johns Hopkins University

School of Medicine, Baltimore, Maryland

Fellow in Ethics & Public Policy

Georgetown University, Washington, DC

Velinda DeForge, MS, RN, ACRN

Aid Atlanta

Atlanta, Georgia

Joan Lebow, MD

Medical Director, Ambulatory Care

Cambridge Health Alliance

Somerville, Maine

Elizabeth Lutas, MD

Department of Community Medicine

St. Vincent's Hospital & Medical Center

New York, New York

Linette Martinez, MD

Homeless Coordinator, Tom Waddell Clinic

Community Clinic Consortium

San Francisco, California

Bob Reeg, MPA

Health Policy Analyst

National Coalition for the Homeless

Washington, DC

Ardyce S. Ridolfo, MSN, FNP, RNC

Clinical Director

Homeless Health Care Center

Chattanooga, Tennessee

Rachel Rodriguez-Marzec, BSN, RN

HIV Case Manager

Albuquerque Health Care for the Homeless

Albuquerque, New Mexico

Jacqueline P. Tulsky, MD

San Francisco General Hospital, AIDS Division

University of California

San Francisco, California

Brenda J. Proffitt, MHA

Project Director

HCH Clinicians' Network

Albuquerque, New Mexico

 


64

Appendix V

 

SYMPOSIUM ON HIV/AIDS AND HOMELESSNESS

March 19-20, 1999, Washington, DC

 

Participants:

 

David Bangsberg, MD, MPH

EPI-Center Director, Hospital Epidemiologist

Assistant Professor of Medicine

San Francisco General Hospital, UCSF

San Francisco, California

Lawrence Burley

Consumer Advocate

Unity Health Care

Washington, DC

Steven Ciesielski, MD, PhD

Homeless health care provider

Hillsboro, North Carolina

Joe Cofrancesco, MD, MPH

Assistant Professor

Johns Hopkins School of Medicine

Baltimore, Maryland

Lois Eldred, PhD

Assistant Director, Epidemiology & Research

AIDS Administration

Maryland Department of Health

Baltimore, Maryland

Mangeca Fanghaenel, RN

HIV Clinical Coordinator

Somerville Hospital

Central Street Health Center

Somerville,

Barbara Garcia

Director Community Substance Abuse Svcs

San Francisco Department of Public Health

San Francisco, California

Lillian Gelberg, MD

Associate Professor of Family Medicine

UCLA School of Medicine

Los Angeles California

Janelle Goetcheus, MD

Medical Director

Unity Health Care

Washington, DC

Mr. Cristal Holloway

Chattanooga-Hamilton County

Department of Health

Chattanooga, Tennessee

Robert Johnson, MD

Division of Adolescent and

Young Adult Medicine

University of Medicine & Dentistry - NJ

Newark, New Jersey

Joan Lebow, MD

Medical Director

Cambridge Health Alliance

Somerville, Massachusetts

Mr. John Lozier, MSSW

Executive Director

National Health Care for

the Homeless Council

Nashville, Tennessee

Elizabeth Mary Lutas, MD

Department of Community Medicine

St. Vincent's Hospital & Medical Center

New York, New York

 


65

Miguelina MaldoNado, MSW

Director of Govt Relations and Public Policy

National Minority Aids Council

Washington, DC

Marsha Martin, DSW

Special Assistant to the Secretary

Department of Health and Human Services

Washington, DC

Linette Martinez, MD

Homeless Coordinator

Tom Waddell Clinic, San Francisco

Community Clinic Consortium

SanFrancisco,California

Martha McKinney, PhD

President

Community Health Solutions, Inc.

Richmond, Kentucky

Jeff Menzer, RN

(recorder)

Washington, DC

Heidi Nelson, MHSA

Executive Officer

Chicago Health Outreach, Inc.

Darwin Palmer, MD

Professor Emeritus

University of New Mexico

School of Medicine

Albuquerque , New Mexico

Brenda Proffitt, MHA

Project Director

HCH Clinicians' Network

Albuquerque, New Mexico

Stephen Raffanti, MD

Medical Director

Health Management Foundation and

Comprehensive Care Center

Nashville, Tennessee

Bob Reeg

Health Policy Analyst

National Coalition for the Homeless

Washington, DC

Ardyce Ridolfo, MSN, FNP, RNC

Clinical Director

Homeless Health Care Center

Chattanooga, Tennessee

Archie Saunders

Consumer Advocate

Unity Health Care

Washington, DC

Helen Schietinger

(facilitator)

Washington, DC

John Song, MD, MPH, MAT

Division of General Internal Medicine

John Hopkins University

Baltimore, Maryland

Ed Sylvester

Consumer Advocate

Unity Health Care

Washington, DC

Rosie Watson

Consumer Advocate

Unity Health Care

Washington, DC

 


66

Federal Attendees:

 

Magda L. Barini-Garcia, MD, MPH

Chief Medical Officer

HIV Education Branch

Division of Training and Technical Assistance

HIV/AIDS Bureau

Health Resouces and Services Administration

Rockville, Maryland

Kim Y. Evans, MHS

Public Health Analyst

Office of Science and Epidemiology

HIV/AIDS Bureau

Health Resouces and Services Administration

Rockville, Maryland

Jean L. Hochron, MPH

Chief, Health Care for the Homeless Program

Division of Programs for Special Populations

Bureau of Primary Health Care

Health Resources and Services Administration

Bethesda, Maryland

Lori S. Marks, BA

Health Policy Analyst

Health Care for the Homeless Program

Bureau of Primary Health Care

Health Resources and Services Administration

Bethesda, Maryland

 

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