At any given time, one out of four people living with HIV in New York City is homeless or marginally housed. This is a recent finding of the Community Health Advisory Information Network (CHAIN) at Columbia University's School of Public Health. CHAIN studied patterns of housing instability in people living with HIV. Studies focusing on national homeless populations offer further data for these overlapping communities. Few homeless individuals are aware of their HIV status. Only a handful are informed about HIV treatment options, and even fewer are able to access such care. Depending on who's counting and where, HIV infection rates in homeless communities run from 8.5% to as high as 19.5% in the United States.
It is no secret that HIV in the United States is increasingly becoming a disease of poor and traditionally marginalized urban communities, with disproportionate rates of infection in homeless people, injection drug users, and people of color. Though community activists have long demanded that more attention be paid to homeless populations at risk of infection, research efforts have only recently begun to focus on documenting how much and in what ways the disease impacts homeless communities. Also under investigation is the usefulness of traditional treatment education and delivery approaches in communities with so many structural barriers to accessing and receiving care.
Just as it is impossible to generalize about a group as diverse as all persons living with HIV, it is similarly useless to discuss "the homeless" without being more specific. Homelessness is not an identity. Nor is its meaning universal. The word is often used to refer to people who live on the street. While this definition reflects the reality of some individuals who are marginally housed, it does not begin to describe the full range of living situations of those who might not live on the street but who are without homes. Often left out of "homeless" but nonetheless crucial to its definition are individuals staying in shelters, treatment facilities, welfare and boarding houses, single room hotels, and other person's homes. We need to be clear about who and what we mean when discussing "homeless communities" and HIV "treatment issues."
A Medical Provider's PerspectiveBy Mary Jane Nealon, RN
As a nurse who has worked for twenty-five years, more than half that time in AIDS care, I admit to some prejudices of my own. I always imagined I would be able to recognize someone who was homeless. Somehow I would know. After three years of working with the homeless, I now understand that they are completely unidentifiable. People who are homeless must be resourceful to survive. Most know where to get food, where to shower, and how to get clothes. In the medical clinic they most likely present with an address.
So now I ask details. How long have you lived there, how many other people live there, is your name on the lease, have you ever been homeless? I've learned that people who are homeless may have full-time jobs, spouses, children or partners. When discussing treatment options, knowing the answers to these questions is crucial in anticipating the needs individuals may have and the obstacles they may face in treatment adherence.
There are some obvious problems connected to homelessness and medication adherence. If someone has no refrigerator and a medication needs to be kept in one, that medication is obviously a poor choice. While most people know how to get some food, they may not have regular meals. Even programs that serve three meals per day often serve the last meal in the afternoon. Medication that must be taken three times a day with food can be problematic. So is medication that must be taken on an empty stomach. It is dangerous to assume that a patient can anticipate when she will be offered food or that she can access water.
Adherence is complicated by fear of disclosure. Thousands of people utilize homeless shelters, but very few of the homeless men and women I've met sleep in them. Violence is rampant and conditions generally poor, but more importantly, most homeless HIV-infected individuals report an increased risk of victimization if there is a perception that someone has AIDS.
Theft of belongings poses another obstacle to treatment adherence. When homeless men and women fall asleep in shelters or on the street, their chances of being victimized increase. Replacing stolen medication is often complicated by the loss of all identification that generally accompanies such thefts. The huge emotional toll of starting over in the system may lead the client to give up on the treatment regimen.
Medication side effects can also impact adherence. Due to the recent policing of homeless persons in New York City, many people who live on the streets and fear the shelter system walk all night and sleep in day programs. Peripheral neuropathy, nerve damage in the feet and, sometimes, the hands, may impact a person's ability to stay on his feet, exposing him to possible arrest. Neuropathy might also make someone vulnerable to injury in extreme temperatures.
As a nurse, I frequently discussed comfort measures with clients who experienced nausea after starting a regimen. “Some people find it helpful to munch on pretzel sticks or crackers, keep a cool wet cloth on the back of your neck,” I'd offer. Of course I never thought to ask, “Do you have any way to get a few crackers? Do you have access to running water, or a cloth?” Usually, side effects like nausea will go away after a few weeks. However, people who go through those weeks with no comfort measures are less likely to continue treatment.
Lack of access to restrooms is a problem for homeless people who experience treatment-related diarrhea. Our impulse as health care providers is often to recommend dietary changes, but that suggestion is meaningless to someone who gets all his meals from food vans or soup kitchens. Even homeless clients with temporary addresses in flophouse hotels rarely have cooking facilities. Treatment-related fatigue in the absence of a safe resting place is another serious obstacle. Other side effects, such as headache, anemia and sleep disturbances, are also complicated by homelessness.
Homeless clients often have multiple social service needs. There are many reasons clients are homeless, and unless the health care provider understands what those reasons are, and how to assist the client, treatment of their HIV infection may be impossible. Once you understand some of the reasons why an individual is homeless, you can institute a treatment plan. Complicating factors include substance use, mental health issues, domestic violence, illiteracy, unemployment, immigration, histories of arrest and incarceration, and co-infection with other sexually transmitted diseases, tuberculosis, and hepatitis. Methadone maintenance can affect medication levels and vice versa. All of these concerns must be addressed prior to instituting treatment.
I've had someone who was homeless say to me: you're the first person to talk to me, the first person to actually look me in the eye in three weeks. The social isolation implicit in this comment means that clinic staff and physicians are the sole support systems for many HIV-infected homeless clients.
In order to treat clients successfully, health care workers must suspend judgement and treat within an individual's existing frame-work. Many health care providers assume that homeless individuals will not adhere to treatment regimens. I've found the opposite. Once the obstacles to treatment are addressed and individuals receive education and support, they are committed to therapy. Unlike many other people with HIV we serve, the homeless client has already had to confront a number of obstacles to get to the clinic in the first place. We need to recognize these challenges and understand that homeless clients need education, advocacy, referral to services, and on-going support in their struggle to live with their disease.
Mary Jane Nealon is a nurse, poet, and freelance medical writer. She works in the Ryan White Program at the Institute for Urban Family Health in New York City.
Barriers to treatment
Recent community-based health studies throughout the country suggest that homeless people continue to be the anonymous faces of the HIV epidemic. The marginalization of HIV positive homeless people has created one of the most persistent barriers to treatment education and delivery. A 1993 abstract from a two-year study of 1001 homeless people in San Francisco found that 33% of those testing positive for HIV were unaware of their status and had never been tested before. Similarly high rates of unknown HIV status were reported in 1999 for shelter dwellers and soup kitchen frequenters who tested positive in New York, Miami, New Orleans and Denver. This high incidence of unknown status for HIV positive people studied suggests that many homeless men and women with HIV are likely to be overlooked by treatment educators, service providers and medical practitioners.
|"Recent data reveal that many homeless people living with HIV continue to be unaware that antiviral treatment for HIV exists."|
Lack of information about antiviral therapy, lack of access to routine preventive care, and competing life priorities for homeless people are frequently cited as barriers to HIV treatment in these communities. Recent data reveal that many homeless people living with HIV continue to be unaware that antiviral treatment for HIV exists. In one San Francisco based study of homeless drug injectors, a research group examined access to antiviral therapy for HIV in a group of homeless persons with histories of substance use. Among the participants testing positive for HIV, more than half of those who had never received antiviral therapy had never heard of such therapies. A similar San Francisco study looking at access to protease inhibitors by HIV positive homeless persons found that only 7% of the people studied had previous access to protease inhibitors, compared to 50-70% reported in standard clinical settings.
Such severely restricted access to antiviral therapy in homeless populations might indicate a lack of information about treatment options, or it might also point to larger questions of access to the medical system, or even discrimination within that system itself. Access to care is certainly an issue in homeless communities. In 1998, one of the first surveys of homeless people using mental health self-help agencies provided valuable insight into this group's health care utilization. The study demonstrated that an overwhelming majority of homeless individuals were accessing health care only in the form of emergency services at hospitals and clinics. Less than ten percent had access to primary or preventive care. 22% had not received care of any kind for more than a year.
Health Conditions Common in this Population
Homeless people often face numerous and overlapping health challenges. Despite this reality, we know very little about the relative physical health of homeless people compared to other groups in the nation. The information we do have suggests that homeless men and women have higher rates of a number of health conditions, many of which can affect HIV and vice versa.
Tuberculosis infection is a serious health threat to homeless people living with HIV. As early as 1994, a now famous research project on HIV and TB infection in San Francisco's home less adults reported a TB prevalence rate of 32% in a large representative sample of homeless individuals in San Francisco. 17% of those testing positive for TB were co-infected with HIV. Since then, TB infection rates have been on the rise for people living in boarding homes, hotels, residential treatment programs and jails. In New York City, rates of co-infection with active TB and HIV ran as high as 20% for homeless individuals at public hospital clinics in 1999. These numbers support multiple research findings that time spent homeless -- specifically in low-income hotels, shelters, prisons and boarding houses -- is itself a risk factor for tuberculosis infection.
Because HIV can hasten the progression to active TB, this frequency of co-infection in homeless communities is particularly alarming. The current standard of care for individuals at risk for developing active TB is isoniazid (INH), or isoniazid in combination with other antituberculotic agents such as rifampin, rifabutin, or clarithromycin. Treatment can last from six months to a year. This regimen presents multiple challenges to HIV positive homeless people. INH comes with its own set of side effects including nausea, diarrhea, peripheral neuritis and liver dysfunction. Peripheral neuritis, the most common adverse effect of INH, occurs most frequently in malnourished patients, thus posing a particular threat to many homeless people. Liver dysfunction is equally hazardous. For people with pre-existing liver disease resulting from alcohol abuse, substance use, or viral hepatitis, further INH-induced stress to the liver can be very dangerous.
To complicate matters, rifampin, the most common antituberculotic agent, cannot be used with several anti-HIV drugs, including indinavir (Crixivan), saquinavir (Invirase or Fortovase), nelfinavir (Viracept), nevirapine (Viramune), and delavirdine (Rescriptor). Rifampin can lower blood levels of other anti-HIV drugs -- ritonavir (Norvir) and amprenavir (Agenerase) -- thus altering their effectiveness and potentially allowing for drug resistant HIV to develop. These treatment challenges are so overwhelming that co-infected homeless persons must frequently choose between treating their TB or HIV, or have that decision made for them and enforced by public “health” officials. In the case of the latter, TB always wins out.
Arthritis, asthma, diabetes and elevated blood pressure also seem to be more common in homeless populations. Two of the few physical health surveys ever done of homeless people suggest that all of these conditions were reported twice as often by homeless 18-44 year olds than by the population at large. One set of surveys found significantly higher morbidity rates for asthma in homeless individuals of all age groups. The group surveying only homeless persons using mental health self-help agencies reported that 70% of those surveyed had dual diagnoses of drug and alcohol dependence. Anemia, frequent cough, headaches, bowel/urination trouble, heart trouble, joint and muscle ache, and teeth/gum problems were the most frequently reported conditions.
With so little information, it is impossible to draw conclusions about why these conditions are so prevalent in homeless communities. We would expect that environmental factors, such as inadequate ventilation, poor nutrition and crowded living conditions might contribute to an increased incidence of certain types of diabetes, asthma, and even joint/muscle pain. Without specifics, we simply can not make this jump. The surveys do tell us that homeless people are at least more likely to report poor health due to asthma, arthritis, heart trouble and diabetes. HIV infection can present treatment obstacles for any of these conditions. We do not know exactly how these confounding health factors are affected by a compromised immune system. This is an area in desperate need of further clinical research. So is hepatitis C infection in homeless communities. Due to the relative frequency of injection drug use in certain homeless populations, it's likely that HCV rates would also be high among HIV positive homeless persons who were infected through injection drug use. Hepatitis C and HIV co-infection can be enormously complicated to treat, especially for homeless people with multiple social service needs.
Real and perceived adherence barriers Homeless people are frequently denied combination therapy by healthcare providers who presume them to be bad adherents. The assumption -- homeless people are too unstable to follow the complex and demanding regimens for HIV antiretroviral therapy. In a gross example of this reasoning, a nurse, rehearsing this argument in the Journal of the American Medical Association in 1998, conflated homelessness with chemical addiction and mental illness and, on these grounds, rejected the suggestion that antiviral therapy be made accessible to homeless people. This misguided reasoning positions homeless individuals opposite the "public health," disregards real treatment needs and falsely suggests that adherence to antiviral therapy is only a problem in homeless communities.
The more attention we give to these communities, the clearer it becomes that not all homeless people are unstable, without health care, and unable to stick to complex regimens. Though access to primary care is a serious problem, most homeless people do maintain some contact with the health care system and are committed to improving their health. Lack of access, not lack of desire, continues to be the number one problem in HIV care for homeless people. Current studies of adherence to combination therapy in homeless populations support this idea. At least five research groups in the last four years concluded that once treatment needs are addressed, homeless people have high levels of adherence, reduced HIV viral load, and low levels of viral mutations. Where clear information about medications, flexible physicians, and accessible clinics, pharmacies and services exist, homeless people consistently show dramatic health benefits from anti-HIV therapy.
Jen Curry is a treatment educator at CRIA.