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
ii
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 Administra-
tion, 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
iv
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 peo-
ple 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 Re-
sources 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 spe-
cialists and homeless advocates to contribute further advice to the project. Many of the recommen-
dations 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 publi-
cation 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 Home-
less 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
vi
TABLE OF CONTENTS
I.
EXECUTIVE SUMMARY
1 5
II. INTRODUCTION
7 8
III. HIV PREVENTION
9 11
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
13 19
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
21 27
A. Background
1. Immunizations and Testing
2. Tuberculosis
3. Homeless Women
4. Rural Areas
B. Recommendations
1. Clinical Recommendations
2. Public Policy Recommendations
vii
VI. ANTIRETROVIRAL TREATMENT
29 33
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
35 38
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
39 40
A. Background
1. Needs Assessment
2. Priorities
B. Recommendations
1. Epidemiology
2. Behavioral Research
3. Clinical Research
4. Policy Research
Appendix I - REFERENCES
43 58
Appendix II - CASE HISTORIES
59 68
Appendix III - GLOSSARY
69
Appendix IV - HCH CLINICIANS' NETWORK HIV/AIDS ADVISORY COMMITTEE
71
Appendix V - SYMPOSIUM ON HIV/AIDS AND HOMELESSNESS PARTICIPANTS
73 75
1
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 Admini-
stration, Department of Health and Human Services, in response to the following concerns:
n
The prevalence of HIV/AIDS is dramatically higher among homeless people
than in the general population.
n
Homelessness and HIV/AIDS are widespread and intersecting problems that
occur in both urban and rural populations throughout the United States.
n
Conditions associated with homelessness make HIV prevention and control
especially difficult.
n
Limited access to medical care severely restricts HIV/AIDS prevention, risk
reduction and treatment for homeless persons.
n
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 home-
lessness (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 un-
der 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, inter-
secting 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 infec-
tion, 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 dis-
orders 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 con-
ditions, including tuberculosis, that are more common among homeless people than among other
groups.
2
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 of-
ten 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 ser-
vice 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 indi-
viduals 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 ex-
perienced 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 lin-
guistically competent caregivers who are willing and able to serve poor and homeless people. Be-
cause subsistence needs take most of their time and energy, most homeless people relegate preven-
tive 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.
3
Influenza and other respiratory infections, diabetes, anemia and liver disease are among the condi-
tions 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 neces-
sary 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 treat-
ment 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 therapeu-
tic 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. Combina-
tions of various antiretroviral agents, when taken as prescribed, can reduce viral loads to undetect-
able 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 effec-
tive 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 cross-
resistance.
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 protease-
sparing 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 re-
bounds 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 ad-
herence to the prescribed treatment regimen. Prior to prescribing antiretroviral medications, physi-
cians 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, wa-
ter 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 impor-
tant 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 pa-
tients 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 over-
come them or prescribe regimens that are easier to follow. Where possible, clinicians should pre-
scribe medications that can suppress HIV in simple combinations a rational strategy for all pa-
tients, 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 ba-
sic 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 standard-
ized 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 dis-
proportionate 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 exacer-
bate 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 stud-
ies on homeless subpopulations for whom HIV prevention and care are known to be especially prob-
lematic e.g., rural populations, homeless women and transgendered individuals. Behavioral re-
search 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 strate-
gies to increase access to comprehensive health care for all homeless people.
7
II.
INTRODUCTION
L. T. started antiretroviral medications in 1997, taking them for six months with dili-
gence. 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.