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To Combat HIV, We Need to Start with Stigma

By Xiomara Ayala, LCSW and Zachary Fried, LMSW

“At least you don’t have HIV.” “My HIV test came back. I’m clean!” “Whatever you do, don’t get HIV.”

HIV is a serious yet manageable chronic condition. But the way we talk about it often doesn’t reflect that. Instead, our language is driven by stigma.

Stigma refers to the negative and often misinformed beliefs that society holds about a group of people. HIV stigma comes from the intense fear of HIV and AIDS in the 1980s and 90s. When the HIV/AIDS epidemic hit, being diagnosed with HIV was a death sentence, and there was a lot of confusion about exactly how the virus was spread. This created panic.

Today, however, we know exactly how the virus is spread and have created antiretroviral drug therapies that can reduce people’s viral loads to undetectable levels (meaning the level of HIV in the blood is so low that the test cannot detect it). HIV is still a serious diagnosis, but if people become diagnosed early and stick with their treatment regimen, they often live long and healthy lives. Unfortunately, the confusion and fear surrounding people diagnosed with HIV has not gone away. Myths (e.g. getting HIV from sharing a toilet seat) still persist. HIV stigma is compounded by stigma against the LGBT community, sex, drug use, and sex work.

This stigma has a major, concrete effect on the health and well-being of young people living with HIV. As social workers at Mount Sinai Adolescent Health Center, we work with HIV+ youth as part of Project IMPACT*. Every day, we witness the effect that stigma has on our patients.

Stigma is the biggest public health issue involving HIV. Here’s why.

Stigma prevents HIV testing.

Sex education in the United States frequently uses scare tactics to try to keep teenagers from having sex. Teachers may make it seem like your life is over if you become HIV+. These scare tactics create a deep fear of HIV and AIDS in young people. Sometimes, this fear is paralyzing. Some young people would rather not know their status than find out that they have HIV.

Youth aged 13-24 make up more than 1 in 5 new HIV diagnoses, and in 2012 44% of 18-24 year olds with HIV did not know they were HIV+. If they don’t get tested, youth put their own health at risk and are more likely to transmit the virus.

Stigma has a major impact on mental health.

Stigma against HIV creates the idea that being diagnosed with HIV says something about a person’s character. Because of intense shame about having HIV, people often feel dirty and unworthy of care and love. This takes a serious toll on the mental health of young people living with HIV. It can lead to depression, anxiety and isolation.

Stigma isolates.

Because of stigma, many of our patients choose to not tell their parents, friends or loved ones that they have HIV. This means that many young people diagnosed with HIV are isolated from their support networks. These are the people who would usually remind them about refills, help them get to medical appointments, and talk to them about their personal issues. This isolation makes living with HIV more stressful, and staying healthy more difficult.

Stigma prevents people from getting treatment.

Many of our patients come in for their medical appointments inconsistently, which puts their health at risk. This is partly because many are terrified that someone will find out that they have HIV. This means that normal parts of treatment for any health issue become a struggle. Will someone find their pill bottle? Or wonder why they have doctor’s appointments so often?

Patients may also avoid getting treatment because of the shame. For many people dealing with stigma, every time they take medication or go to a medical appointment they are reminded of their HIV status, and feel the accompanying shame and anxiety. One way to cope with these feelings is to avoid the triggers—in this case, the medication and health care necessary to stay healthy.

Stigma spreads HIV.

If someone with HIV has an undetectable viral load, HIV is very unlikely to be transmitted. This means sticking with treatment is one of the best methods to prevent the spread of HIV. But, as we’ve discussed, stigma makes it less likely that young people will get tested and treated.

Stigma also affects the use of Truvada as PrEP (Pre-Exposure Prophylaxis). PrEP is a very effective tool in preventing the spread of HIV. However, some medical providers hesitate to prescribe it because they think it encourages risky behavior. But we don’t have this attitude toward other preventative medicine. A medical provider won’t hesitate to prescribe anti-malaria tablets to someone traveling to Kenya, even though traveling to an area with malaria can be a “risky behavior.”

We can end stigma.

Stigma is a complicated and powerful force, but we can fight it. We need to educate young people about how HIV is and is not spread. We need to talk openly about ALL of the prevention methods available. We need to challenge language and behaviors that further stigmatize HIV. This includes everything from writing “only negs” on your dating profile to saying that you’re “clean” when you’re HIV negative.

If you’re 10-22 years old and live near NYC, Mount Sinai Adolescent Health Center provides free, confidential, judgment-free STI testing. We also provide free, comprehensive healthcare to HIV+ youth aged 13-24 years old through Project IMPACT. You can call Project IMPACT for an appointment at 212-731-7688.

*Please note: Both Xiomara and Zachary also see patients who are NOT a part of Project IMPACT.

Xiomara Ayala, LCSW, graduated with her MSW from NYU Silver School of Social Work in 2005. Since then, she has focused on therapeutic work with adolescents and young adults in a variety of settings, including home-based substance use treatment for juvenile justice-involved youth and mental health and crisis services at a community health clinic. She has been with Mount Sinai Adolescent Health Center for a little over five years, working with both the mental health clinic and Project IMPACT.

Zachary Fried, LMSW graduated with his MSW from the Silberman School of Social Work at Hunter College in 2014 and works at Mount Sinai Adolescent Health Center for the Project IMPACT, Primary Care Social Work, and Mental Health programs.  Zachary has worked at Mount Sinai Hospital since 2014, when he began working with Medicare recipients to reduce hospital readmissions. Zachary has experience in HIV testing, prevention and research, and is particularly interested in the intersections between physical and mental health.

The Mount Sinai Adolescent Health Center is located in New York City. It provides comprehensive, confidential, judgment free health care at no charge to over 10,000 young people every year. This column is not intended to provide medical advice, professional diagnosis, opinion, treatment or services to you or to any other individual, only general information for education purposes only.

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