Stigma of HIV and representations in the media

40 years into the HIV pandemic, the medical advances in HIV prevention and treatment are dramatic and live-saving. Unfortunately, these advances are not paralleled by changes in attitude, and HIV stigma and discrimination remain embedded in our culture. The media plays a central role in shaping dangerous narratives, often representing people living with HIV as irresponsible and unhealthy.

HIV stigma

"HIV (human immunodeficiency virus) remains one of the most stigmatised of all medical conditions," says Matthew Hodson, executive director of NAM aidsmap.

"The ignorance and fear that clings to this virus means that for many people living with HIV, it is the stigma we face that now provides the greatest challenge. Attitudes towards people living with HIV have not progressed as rapidly or as positively as our medical treatment has."

HIV stigma describes the negative attitudes toward people living with HIV. Historically, HIV stigma has been associated with poorly understood and untreatable conditions, the victims of which are discredited and discriminated against.

"HIV stigma usually stems from lack of information about the virus, or moral judgements about how someone has contracted HIV," explains Ian Green, CEO of Terrence Higgins Trust (THT). "Stigma manifests in different ways, it could be the rejection of a partner if you find out they're living with HIV, the mental health impact of living with HIV, or being afraid to take an HIV test."

While HIV may now be treatable and relatively easy to manage in richer countries, HIV stigma has stuck around, invoking negative reactions in the public and affecting the mental health of many people living with HIV.

HIV stigma and discrimination in the media

"Representations of HIV in the media matter - those who lived through the 1980s will never forget the headlines, and the health campaigns designed to instil fear in the general public," says Green. "The effects of these negative representations are still felt today."

Research has found that the discursive power of the media "has the potential to 'other' people living with HIV and generate stigma by invoking a dynamic of blame and shame".

Sadly, ignorance and misinformation around HIV in the media contributes to HIV stigma. It would appear that the advances in HIV prevention and treatment haven't achieved the widespread press they deserve.

According to a recent survey of 3,000 people:

  • Only 16% were aware that effective HIV treatment stops HIV from being transmitted.
  • Only 25% knew there is medication available to prevent someone from acquiring HIV (known as PrEP, or pre-exposure prophylaxis).

The link between HIV stigma and sexual stigma also plays a huge role, particularly in key vulnerable groups, such as men who have sex with men and transgender people.

Worryingly, the survey found that the majority of participants held negative attitudes toward people with HIV:

  • Only a third fully agreed they have sympathy for all people living with HIV, regardless of how they acquired it.
  • Only a third said it would definitely not negatively impact their relationship with a family member if the person said they were living with HIV.

In the worst scenarios, negative attitudes caused by HIV stigma can incite bullying and violence. A 2018 survey of women living with HIV in the UK found more than half had experienced violence due to their HIV status. Even when enacted HIV stigma isn't taken this far, culturally embedded stigma as represented in mainstream media can have a hugely negative impact on a person's mental health.

Risk-taking and recklessness

Many narratives in the media imply that people who contract HIV are in some way to blame because they participate in high-risk activities. A study of 103 Irish newspapers from 2006-2016 found almost half made some reference to risk, and that "people living with or affected by HIV were frequently positioned as somatically and morally deficient via discourses of risk and responsibility".

In reality, the risk is now significantly reduced and there are many ways for key vulnerable groups to avoid high-risk activities. Regarding sexual encounters, as well as standard safer sex methods such as condoms, PrEP - a daily course of antiretroviral drugs - can protect HIV-negative people from HIV.

Despite the effectiveness of PrEP in preventing the spread of the virus, PrEP stigma is prevalent in the media. Research shows that many people believe PrEP causes people to have more 'risky sex' because they don't have to pick their sexual partners as carefully. In a 2019 study of the Canadian media, uncertainty regarding PrEP and negative attitudes toward sexual responsibility were found to be prevalent.

Associating PrEP with sexual irresponsibility is contradictory. As it is illogical, experts argue that PrEP stigma is, at its core, sexual stigma: "A conscious or unconscious discomfort with the idea of sexual expression unfettered by the threat of HIV infection."

An unhealthy and fatal condition

The Irish media study also found that people living with HIV were often characterised as the 'unhealthy other', regardless of their actual health status. In addition, many descriptions were outdated and inaccurate, not taking into account the medical advances that have drastically changed what it means to have an HIV-positive diagnosis since the 1980s' AIDS era.

"When people consider HIV, the images that come to mind still are often outdated ones of sickness and dying," says Hodson. "The fear-based campaigns of the eighties cast a long shadow. They still persist even among those who were not around at that time. The association of HIV with AIDS and death prevails despite the fact we have been able to treat and control and prevent this virus from being passed on with medication since 1996."

These HIV treatment medicines, known as antiretroviral drugs, now allow people to live long and healthy lives. With effective treatment, very few people go on to develop AIDS, and death rates from AIDS has reduced dramatically.

The impact of shame

As a result of HIV stigma, many people living with HIV experience shame and suffer from serious mental health conditions. In fact, according to THT, depression is twice as common among people who are HIV positive.

Shame can have a hugely negative impact on people's lives and relationships. One 2016 survey found that 35% of people living with HIV feared rejection by a sexual partner and 33% had avoided sexual encounters in the last 12 months.

"Many people with HIV haven't told their families, their work colleagues and some, still, find themselves unable to be open with the people they have sex with," adds Hodson.

Experts have identified 5 ways in which shame can negatively impact upon attempts to fight the HIV pandemic:

  1. Shame can prevent a person from disclosing their sexual history to the clinician.
  2. Shame can cause a person living with HIV to not engage with healthcare.
  3. Shame can prevent a person from seeking STI and HIV testing.
  4. Shame can prevent a person from disclosing their HIV (or STI) status to new sexual partners.
  5. Shame can cause psychological damage and make living with HIV a far more negative experience than it needs to be.

HIV stigma and healthcare

The effects of HIV stigma can't be underestimated. Many experts believe that HIV stigma persists within healthcare settings, and that stigmatising practices include:

  • The use of excessive personal protective equipment (PPE).
  • Delays in care provision.
  • Unnecessary referral of people living with HIV to specialist services in order to access care.

Not only can these experiences affect the quality of care, but HIV stigma also deters people from seeking diagnoses and treatment. 31% of women with HIV status admitted to avoiding or delaying attending healthcare because they feared discrimination.

"HIV stigma itself creates barriers to HIV testing, and these tests are vital to ensure that people can access treatment which not only saves lives but prevents transmission to our sexual partners," explains Hodson.

How do you deal with HIV stigma?

While HIV remains stigmatised, in the UK people living with HIV can access mental health support. Many clinics have dedicated sexual health psychologists who can give people tools to deal with stigma and overcome feelings of shame.

Green argues that to overcome HIV stigma in the media: "Positive representations in the media are are incredibly influential. That's why at Terrence Higgins Trust, we work tirelessly to amplify the voices of people living with HIV, to show how much the virus has changed.

"We all can play our part in the fight against HIV by shouting about the progress we've made since the early days of the epidemic," he adds.

Hodson also believes that, "the more of us who are open about living with HIV, who are willing to answer questions, address concerns, and challenge myths, prejudice and outdated information, the better it will be for all people living with HIV.

"By being open, shameless, brazen even, about HIV, we can tackle much of the ignorance and fear that lead to stigma. People with HIV aren't frightening or different when you know us."

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