How We Start Erasing the Stigma Around HIV

A stigma is a negative attitude or prejudice toward people with a distinguishing characteristic, such as a physical or mental health condition. Stigmas can be self-imposed, individual, or institutional and often lead to discrimination against people with that specific characteristic.

Stigmas against people living with HIV began in the 1980s, when the virus initially led to the HIV and AIDS epidemic in the United States. Misinformation about HIV led to common beliefs about people living with the condition — many of which have no scientific basis, but were used to fuel stigma and discrimination.

In 2008, the People Living with HIV (PLHIV) Stigma Index was created to collect evidence on the impact of stigmas and discrimination against people living with HIV. Over 100,000 people in 100 countries who are living with HIV have contributed data to the PLHIV Stigma Index.

Although we’ve come a long way in our knowledge about HIV and AIDS since the 1980s, misguided beliefs still contribute to the stigmas surrounding HIV. Below, we explain some of the most common misconceptions that fuel discrimination against the millions of people around the world living with HIV.

HIV is not as big of a concern as it once was

HIV diagnosis and treatment has greatly improved since the 1980s. However, HIV still affects millions of people around the world. In fact, according to the Centers for Disease Control and Prevention (CDC), even outside of the United States, HIV transmission is a huge public health concern for people living in the Global South and Global North.

HIV only affects certain groups of people

While certain groups of people have a greater chance of contracting HIV, the virus can be transmitted to anyone, regardless of their gender, ethnicity, or sexuality. HIV can also be transmitted outside of sexual contact, such as through sharing needles or drug equipment, or from mother to baby.

HIV is easily transmitted through touch

HIV can only be transmitted via the following means:

• blood
• semen
• pre-seminal fluid
• rectal fluids
• vaginal fluids
• breast milk

The CDC confirms that HIV cannot be transmitted by shaking hands, touching, or being in the same room as someone living with HIV.

HIV is a “death sentence”

HIV treatment options have continued to improve since the introduction of the first FDA-approved HIV drug, azidothymidine, in 1987. Since that time, the development of new antiretroviral drugs has dramatically increased the life expectancy of people living with HIV.

Stigmas can come in many different forms. People living with HIV can be subjected to stigmas that are not only experienced but also internalized or even anticipated. HIV stigmas and discrimination can also be self-imposed, individual, structural, or institutional.

HIV stigmas can negatively affect the physical health, healthcare behaviors, and interpersonal relationships of people living with HIV and can impact many aspects of life, such as:

• Employment. Increased healthcare needs for people living with HIV, such as needing to take time off for medical appointments, can jeopardize employment. In some cases, prejudice and discrimination may also exist in the workplace.
• Housing. Lack of employment due to discrimination can make it difficult to find adequate housing, as can discrimination from landlords. People living with HIV may also experience prejudice or discrimination from the people they live with or their neighbors.
• Healthcare. Feelings of shame from HIV stigma can prevent people living with HIV from seeking the lifesaving treatment they need. In addition, when healthcare professionals are not fully educated on the facts about HIV, it can create more stigma.
• Relationships. Social stigma against people living with HIV can lead to gossip, rejection, bullying, and in some cases, even violence. Harmful HIV myths can also make intimacy a difficult subject for people living with HIV.

Individual and institutional stigmas can also have a huge negative impact on the mental health of people living with HIV. Stigmas can impact many aspects of mental health including:

• self-esteem
• depression and anxiety levels
• avoidance and blame coping behaviors
• medication adherence
• social support
• physician trust

Educating yourself and others on the facts and statistics about HIV is one of the most important steps to combat HIV stigma, so here’s what you need to know about HIV.

According to 2018 data from the CDC, it is estimated that 37.9 million people worldwide are living with HIV, with 1.2 million of those people living in the United States. Roughly 24.5 million people worldwide received antiretroviral therapy (ART) in 2018 to treat HIV.

Although HIV affects people all around the world, sub-Saharan Africa accounts for roughly 61 percent of all new HIV cases. In addition, people in the following regions are also significantly affected by HIV and AIDS:

• Asia and the Pacific
• Latin America and the Caribbean
• Eastern Europe
• Central Asia

In the United States specifically, a high number of HIV cases are found in metropolitan areas with larger populations, with the South having the highest number of people living with HIV.

Although HIV can affect anyone, regardless of gender or sexuality, it disproportionately affects two specific groups of people in the United States:

• people who engage in male-to-male sexual contact
• people who are Black and Latino

There are several factors that may explain the higher prevalence of HIV among historically marginalized communities. These may include:

• Socioeconomic factors. Certain socioeconomic factors can increase barriers to prevention and medical care, which can greatly increase HIV prevalence. These factors include:
  • racial discrimination
  • poverty
  • lack of access to healthcare
  • higher rates of incarceration
• Fear of stigma. A fear of being honest with friends, loved ones, and medical professionals about drug-related or sexual behaviors due to the stigmas they carry can hinder education, prevention, and medical treatment.
• Higher STI prevalence. The rates of overall STI prevalence are higher among People of Color, and having an STI increases the chance of contracting HIV.

The CDC also says that in 2018, about 66 percent of new HIV cases in the United States were contracted from male-to-male sexual contact, versus 23.8 percent from heterosexual contact and 6.6 percent from injected drug misuse.

People who are Black accounted for 42.2 percent of 2018 HIV cases in the United States, followed by people who are Latinos at 27 percent and who are whites at 25.2 percent. People who are Asians, American Indians, Alaska Natives, Native Hawaiians, Pacific Islanders, and of other ethnic groups made up the remaining 5.6 percent of new cases.

We can all take part in standing up to the stigmas and discrimination that people living with HIV experience by changing the way we and others view HIV. If you’re looking for ways to reduce HIV stigma for yourself or the people around you, here are some suggestions to get you started.

Educate yourself and others

Take some time to read up on the facts and statistics about HIV, rather than relying on outdated information about what HIV is and who is affected by it. Seek out experiences from people living with HIV to learn more about how they can be supported, both individually and within their communities.

Consider using more mindful language

When speaking about HIV, be mindful of your language and choose words that can help reduce the stigmas surrounding people with HIV. Instead of using words like, “HIV-infected”, “unsafe”, and “high-risk”, which can carry negative associations, aim to use neutral or inclusive language instead, such as “people living with HIV.”

Stand up against discrimination

Stigmas and discrimination can have a significant impact on the life experiences of people living with HIV, so it’s important that we all speak out against it when we see it. Standing up can look like actively speaking up when someone says something harmful or reporting discrimination to the appropriate people.

Get involved with HIV organizations

National and community-based HIV organizations play an important role in breaking down stigmas by providing education about the facts and statistics of HIV. Volunteering, donating, and bringing awareness to these organizations contributes to the continued advocacy of people all around the world living with HIV.

HIV stigmas, especially those based on harmful myths, can have a profoundly negative impact on people living with HIV. Often, HIV stigma can lead to prejudice and discrimination in many areas of life, including healthcare, employment, housing, relationships, and more.

All of us have a responsibility to dispel the harmful myths surrounding HIV and advocate for people who may be impacted by them. Educating yourself and people around you about the facts surrounding HIV is a great place to start.