To understand the impact of homelessness on youth and HIV, we turned to two New York City experts with hands-on experience. Kate Barnhart is the former Director of Sylvia's Place, an emergency shelter for lesbian, gay, bisexual, and transgender (LGBT) youth, and Carl Siciliano is the Executive Director of the Ali Forney Center, which provides housing and supportive services to homeless LGBT youth.
How widespread is the problem?
Carl: Nationally, a 2002 estimate found close to 1.7 million homeless and runaway youth, most between the ages of 15 and 17. Just about 6% of them identified as LGBT. The New York City Council recently counted over 3,000 homeless youth in the city, and a third of them are LGBT. Homeless youth in general are at greater risk for HIV than their peers, and homeless LGBT youth are at particular risk. The National Coalition for the Homeless estimates that the rate of HIV infection is 3% to 20% higher among the homeless.
Kate: Homeless youth have a higher risk of getting HIV because many turn to "survival sex" at some point. Whether they're having sex for money, drugs, or a place to stay, they're often not in a position to demand a condom. A large number have lived with older sexual partners. Although they may consider these relationships romantic, being dependent on another person for housing makes them vulnerable, especially when it comes to safer sex. We have had several cases of young people who lived with older "boyfriends" who demanded unsafe sex, only to discover the partners' HIV status later, by finding things like medication or ADAP cards.
Carl: Many survive through sex work. Even those who don't do sex work tend to have many sexual partners. Studies show that LGBT homeless youth have higher rates of substance use. They also suffer from higher rates of mental illness, and experience more violence and trauma. These factors create a perfect storm of risk factors. In fact, about 25% of the clients receiving emergency housing and drop-in services at our center are known to have HIV.
Does just being homeless increase their risk of getting HIV?
Carl: Being homeless increases the instability of their lives, and there are fewer than 100 beds available to this population in New York City. So LGBT youth find themselves in a fearful, chaotic situation that makes it very difficult to cope with a positive test result. It seems very clear that the lack of safe emergency housing is the greatest cause of their high rate of HIV. Unstable housing is also the greatest barrier to their learning their HIV status and responding in a healthy manner.
Kate: Homeless young people are also likely to use drugs and alcohol. This increases the risk of getting HIV, whether directly, through shared needles, or indirectly, by removing inhibitions and impairing decision-making skills.
Homeless transgender youth face other risk factors. Since they lack the stability and resources needed to make their gender transition under a doctor's care, they may turn to street sources for hormones and silicone, and may inject them with unclean syringes.
All of these risks can be lowered by using harm reduction methods, but this requires education. Since many homeless adolescents drop out of school, whether because of the homelessness itself, anti-gay/anti-trans harassment, or for other reasons, school-based HIV education may not reach them. Most youth shelters and drop-in centers offer HIV testing and education, but this only reaches those who use these services.
Do we need more HIV testing efforts?
Carl: It would stand to reason that these young people should be tested. But they often view testing with fear and anxiety. I recall a young homeless trans woman who asked for an HIV test. When we did pre-test counseling, she said that if she got a positive test she would kill her boyfriend, who she thought infected her. We didn't test her, but instead offered her mental health counseling. Well, she went to another test site, found out she was HIV positive, and came back to our center and stabbed her boyfriend. Luckily, he was not seriously injured.
Kate: Far from lacking access to HIV testing, homeless youth are, in my opinion, over-tested. According to our intake database, 95% of our clients report that they've been tested recently. Many get tested several times each month, which does not make much sense medically but does makes sense for someone who needs an incentive like a subway fare card.
Incentives bring other problems, too. A young person focused on getting one may not be thinking of the possibility of testing positive. One young man at our shelter took an HIV test to get $5 for lunch money, tested positive, and tried to hang himself in our bathroom that night. This is an example not only of the potential problems of incentives, but also of the lack of follow-up services for those who do test positive.
Carl: Even after pre-test counseling, three of the last ten people to test positive here were hospitalized because of a desire to commit suicide. This is clear evidence of the need to link HIV testing with mental health counseling.
Testing is dangerous without establishing trust, and that means addressing more pressing issues like homelessness first. Providing a sex-positive environment that is accepting and confidential builds a sense of community and trust. For example, one of our clients, A.J., was kicked out of his mother's house because of his sexual orientation. He turned to sex work to support himself and began binge drinking to cope with depression. After bed-hopping for some time, he heard of the Ali Forney Center and came in for an intake.
A.J. was tested for HIV within a month of his arrival and found out he was positive. We were able to provide housing and primary care, along with mental health counseling. But while he had stable housing and access to regular health care, A.J. would fall out of mental health therapy frequently. He was battling depression and still occasionally did sex work. He was not disclosing to family, friends, or sex partners.
After many discussions with us, he restarted mental health therapy, and this time stuck with it. He developed new coping skills for his depression. After time, he also began to accept his HIV diagnosis and was able to start to disclose to important people in his life. Two years after learning his diagnosis, A.J. now has permanent housing, adequate health care, and a job. He still goes to therapy, and discloses to his sex partners.
So testing doesn't help unless young people get the services they need. Are those services available?
Kate: While there are several excellent programs for young people with HIV, connecting our clients with these programs takes work, like convincing them to attend, getting their documents (many homeless youth lack birth certificates, Social Security cards, etc), completing referral paperwork, and escorting them to the first appointment, at least. And while they wait to be accepted, the shelter or drop-in program must do the work of supporting them through the initial crisis, even though these programs often do not receive funding for these services.
There is an urgent need for services that can be obtained quickly, with little or no documentation, on a walk-in basis. Walk-in services are especially needed for mentally ill and substance-using youth, and those involved in sex work. These individuals often have great difficulty keeping appointments due to the chaotic nature of their daily lives and the lack of basic items like watches, appointment books, calendars, or alarm clocks. If you're sleeping on the subway, it can be difficult to know what day it is, never mind what time it is. And homeless young people who are aware that they have an appointment frequently do not have the subway fare to get there. Services for homeless youth are most successful when provided where they gather, or within walking distance.
Is it possible for a homeless young person to get good medical care?
Kate: They do have difficulty obtaining medical care in a consistent manner. They often rely on emergency rooms or see medical providers only haphazardly -- a medical van one week, the doctor at a shelter the next -- depending on what program they are currently attending.
Adherence to medication is also a huge issue for homeless youth. It's hard for a young person in a shelter to take medication confidentially, since residents may be required to give medication to staff for safekeeping or may be seen by peers. Some meds require refrigeration, with often only a shared refrigerator available. Young people living on the street or moving from place to place may have their possessions stolen, including medications that are very difficult to replace.
Carl: Access to emergency housing is critical in getting clients to a place where they can accept a positive test result and stay in care. Housing provides a way to reduce continued harm from sex work and drug use by giving them much more stability in their lives. It's clearly linked with better health outcomes for people with chronic illnesses. It is the bedrock on which access to care, HIV treatment, and entry into the job market are built.
Kate: We recently had a young man disappear from a shelter, leaving behind his medications. By the time he returned (he had been staying with a man he met in a bar), he had missed so many doses that it was necessary to change him to a new regimen. Medication side effects can be especially difficult for homeless kids since they lack easy access to bathrooms and must rely on public restrooms or share a shelter bathroom with many others. Also, most youth shelters require clients to be out of bed by a certain time and are closed during the day, so there is no opportunity for rest if needed.
How do they deal with disclosure?
Carl: Many LGBT youth experience rejection when they come out about their sexuality. They sometimes end up homeless as a result. And those with HIV find it hard to disclose their status, often for the same reasons that kept them from getting tested. It comes as no surprise that many are afraid of yet another layer of rejection. HIV is still heavily stigmatized, and disclosure comes with great risks. For example, family and friends often find it hard to cope with such news, and turn to others for comfort. Too often, news spreads quickly and youth find themselves betrayed and full of shame.
Family and friends often incorrectly expect that simply being LGBT will lead to HIV infection, and HIV is still misunderstood as a death sentence. Young people with HIV often feel like they let themselves and their loved ones down at a time when their spirits need lifting. And these young people not only have to deal with rejection and homelessness, but many are born in low-income neighborhoods with high crime rates. They may already have a fatalistic sense of what the future brings. Testing HIV positive turns an already bleak vision of one's future into "doom."
How does having HIV affect their self-esteem?
Kate: A large majority of our clients experienced childhood sexual abuse or rape. This is a documented risk factor for later HIV infection, since it can reduce personal boundaries and sense of self-worth. Self-worth among homeless youth is also negatively affected by other traumatic experiences, including emotional and physical abuse in childhood, death of caretakers, homophobic and transphobic harassment, violence on the street, and police brutality. Homeless young people are frequently arrested for offenses ranging from sleeping in public places to more serious crimes, and they are at risk for being raped in jail -- particularly transgender women, who are housed in male units.
Carl: As we mature, we tend to gain ego strength and a sense of self that comes from who we know ourselves to be. Teens are less likely than adults to have gained this ego strength. They are more likely to allow their sense of worth to be based on how others view them. As a result, they can be deeply afraid of the stigma of HIV. Homeless LGBT teens already face terrible rejection from their families and communities. They often find much of their self-esteem in their sexual desirability. Being desired sexually is one of the very few areas where they feel wanted and in control.
As a result, many of these young people will refuse to return to a program where the staff or other clients know they have HIV. Often, when a young person is given a positive test result, that's the last time she or he is seen at that program. In addition to providing a barrier to testing, this refusal to be seen by others as HIV positive also creates a barrier to housing designed for people with HIV. They think living there "outs" them in the eyes of others.
What needs to be done to address this problem?
Kate: It's essential that youth with HIV have access to stable housing so that they can consistently participate in health care and support services, eat nutritionally sound meals, get adequate amounts of rest, and avoid the daily stress of trying to find somewhere safe to sleep. The current New York City policy of restricting HIV/AIDS Services Administration (HASA) housing to people with an AIDS diagnosis greatly affects young people, since they are usually recently infected. This policy forces them to remain homeless until factors related to their homelessness interfere with their treatment to such an extent that they develop AIDS and are finally eligible for HASA housing.
Carl: Efforts to provide care for HIV-positive youth work best with a full range of services, so the program is not stigmatized as HIV-specific. Homeless LGBT youth are at such high risk of HIV infection because of the catastrophic merging of risk factors that homelessness adds to their lives. Addressing their homelessness is an important first step toward HIV testing and care. The terrible lack of safe and appropriate emergency housing for homeless LGBT youth is a public health crisis that we must address if we ever hope to stem the spread of HIV.
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