the changing of history to edit out the parts that don't sit well with you. In their article, Conceptualizing Stigma, Bruce G. Link and Jo C Phelan define stigma as "the co-occurrence of its components - labeling, stereotyping, status loss, and discrimination" - and further indicate that for stigmatization to occur, power must be exercised.
What is HIV/AIDS related Stigma?
HIV/AIDS-related stigma is a complex concept that refers to prejudice, discounting, discrediting and discrimination directed at persons perceived to have AIDS or HIV, as well as their partners, friends, families and communities.
Why does the Stigma surrounding HIV exist?
Sexuality has historically been associated with one’s moral character. Stigma is a proxy for moral judgment. Thus, some believe that one's character is infected if he/she has HIV; there is much more culpability surrounding a sexually transmitted disease than a non-sexually transmitted disease. Drivers of HIV-related stigma usually have misperceptions regarding casual transmission of HIV and pre-existing prejudices against certain populations, behaviors, sex, drug use, illness and death. Additionally, the stigma can be institutionalized through laws, policies and practices that unjustly affect marginalized groups.
How do drug-related and sexual stigma contribute to HIV/AIDS-related stigma?
Because HIV is associated with drugs and sex, drug-related and sexual stigma also have effects on the overall stigmatization of HIV-positive individuals. Drug-related stigma refers to the criminalization of a health-related issue, viewing drug use or addiction as a moral or personal failing, fearing individuals who use drugs, and isolating individuals who use drugs. Sexual stigma is stigma surrounding with who we have sex, how we have sex, and the quality of this sex. Society has decided that sex is something dangerous and to be feared, leading to increased stigmatization of sex and a lack of proper education on sex.
How is Stigma harmful?
The stigma surrounding HIV leads to…
Increased isolation from community, family or friends
Decisions to not disclose HIV status to friends, family and sexual partners
Undermining one’s ability to access and adhere to treatment
Undermining of prevention efforts such as using condoms and not sharing syringes
Loss of house
Loss of jobs
To vulnerable populations, stigma or the fear of being stigmatized discourages individuals from seeking information and programs for fear that others will think they have HIV, are promiscuous or unfaithful, or are members of populations associated with HIV such as people who inject drugs, sex workers, and gay men/MSM. As a result, less people are willing to get tested for HIV, use condoms, ask their partners about their status, use clean needles and injection equipment, or access biomedical prevention options such as male circumcision and pre-exposure prophylaxis (PReP).
Stigmatization of Sex Workers
A 2012 study by the Open Society Foundation in Kenya, Namibia, Russia, South Africa, USA, and Zimbabwe found evidence in all six countries of police harassing and physically and sexually abusing sex workers who carry condoms, or using the threat of arrest on the grounds of condom possession to extort and exploit them.
- Sex Worker in South Africa: “We try to use condoms to protect ourselves from HIV/AIDS, but they don’t allow us to carry them, so how can we protect ourselves?”
- Ndeye Astou Diop, Aboya (an organization that works with HIV positive women in Senegal): “Sex workers have told us when they ask a client to use a condom, he offers
double the price to have sex without the condom. These women are trying to provide for their children and families, so they take the offer.”
Peer-led- drop in healthcare centers in Myanmar.
Myanmar’s Target Outreach project began in 2004 and has been implemented in 18 cities across the country, which reaches 62,000 sex workers a year. The project establishes drop-in centers where sex workers can access free healthcare without stigma. Additionally, the project provides technical and financial support needed to open new centers.
Community-led interventions in India.
Ashodaya Samithi (Dawn of Hope) began in 2005 as a collaboration between researchers and sex workers to offer basic health services in Karnataka, India. There are now more than 4,000 sex worker members. The intervention led to increased condom use and education for the sex workers on how to protect themselves.
“Testing for HIV and STIs is impossible. In Kazakhstan, the law states that a person under 18 cannot be tested for HIV without an accompanying parent or guardian. As a rule, parents do not know that their daughter sells sex. Therefore, girls are afraid of disclosure and do not get tested for HIV or STIs.”
– a sex worker in Kazakhstan
Stigmatization of Sex Workers, specifically in Louisiana
Human Rights Watch: “Louisiana state laws and practices that prohibit access to sterile syringes and criminalize sex work contribute to an uncontrolled HIV epidemic and an extremely high AIDS death rate that is double the US average.”
The Issue: Sex Workers, drug users, and transgender women are neglected, punished, and stigmatized by state laws and policies that endanger their safety, health, and lives. There are many laws that perpetuate the stigma surrounding HIV, such as:
“Crimes Against Nature” Law: defined as the solicitation of oral or anal sex, functions as state-sponsored homophobia. The statute is a vehicle for state-sponsored discrimination against lesbian, gay, bisexual, transgender communities, and women of color.
Criminalization of “Loitering for Prostitution:” this is an offense that is so vague and broadly drawn that it permits police to consider a wide range of behavior to be grounds for arrest, including where people are, what they are wearing, and what they may have done in the past.
Law Enforcement Harassment: In addition to having laws that contribute to the stigmatization of HIV, law enforcement officers have been known to perpetuate the issue. Law enforcement officers are known to harass sex workers and criminalize them based on the possession of condoms. Criminalization based on the possession of condoms leads sex workers to be unable to protect themselves properly when having sex, greatly increasing the risk of contracting HIV.
Syringe Access: Louisiana state law prohibits syringe distribution outside of prescribed medical usage, driving syringe distribution programs underground and keeping clean needles out of the hands of those who need them most. Additionally, the one public syringe exchange in New Orleans receives no government funding and is open for only two hours a week.
Prisons in Louisiana: Louisiana’s nine state prisons offer access to HIV testing, treatment and a strong federally funded program for connecting inmates to medical care upon release, yet state prisoners housed in local jails lack access to these programs.
Solution: Louisiana needs to focus on public health instead of criminalization. Until Louisiana substitutes a public health approach for punitive and discriminatory policies and invests in housing, healthcare, and other basic human needs, HIV will continue to endanger the lives of the state’s most vulnerable residents.
Stigma and the Workplace
Disclosure to Employers: Fear around disclosing HIV status to employer: “It is always in the back of your mind, if I get a job, should I tell my employer about my HIV status? There is a fear of how they will react to it. It may cost you your job, it may make you so uncomfortable it changes relationships. Yet you would want to be able to explain about why you were absent, and going to the doctors.” – HIV-positive woman, UK
“Employers are better off retaining the employees who are already part of their value systems. In my view, testing and identifying people who have chronic illnesses, including HIV, and intervening only adds to the eventual bottom line of the employers…HIV and other chronic illnesses cost employers money, and they need to take it seriously and invest in not just testing, but also in disease management and follow-up, and through reducing absenteeism and increasing the number of days people are at work, they can increase productivity. Stay committed to the health and wellness of your employees.”
Stigma and Black Women
Statistics of Black Women with HIV:
¼ of people diagnosed with HIV are women.
61% of women diagnosed with HIV are African American
African American and Latino women represent 30% of all women in the US but they account for approximately 80% of HIV cases among women
Why the Stigma?
The stigmatization of HIV-positive black women is because African American sexuality has been misconstrued for decades. The stigma for Black women is "coupled with historical negative images of African American women as sexually loose and can further complicate HIV-related stigma for black women." These historically negative images of African American women were developed during slavery; “plantocracy was an industry that capitalized on the sexual misuse of the Black body, while at the same time naming the Black body as culpable. In this way, stereotypes (such as enslaved women welcomed all sexual advances) were used to highlight difference so that it would appear factual instead of bigoted, and these myths helped to formulate societal perceptions that benefited the status quo." Thus, the image that African American stereotypically signals an image of a wild, excessive sexual appetite that cannot be contained remains one of the images reproduced in the HIV/AIDS narrative.
Health Care Discrimination due to Stigma
It is known that some health providers minimize contact with, or care of, patients living with HIV. They also may delay treatment, deny treatment, demand additional payment for services, and isolate HIV-positive patients.
Case Study in Thailand: The Ministry of Public Health found that over 80% of healthcare workers had at least one negative attitude to HIV, while 20% knew colleagues who were unwilling to provide services to people living with HIV. Additionally, ¼ of HIV positive people avoided seeking healthcare for the fear of disclosure.
Stigmatization of Men who have Sex with Men (MSM)
CDC 2018 Stats:
"In 2018, gay, bisexual, and other men who have sex with men accounted for 69% of all new HIV diagnoses in the United States and 6 dependent areas. Of those men, 25% were African American, 20% were Hispanic/Latino, and 17% were white."
"Young gay and bisexual men accounted for 83% of all new HIV diagnoses in people aged 13 to 24 in 2018."
Machismo Culture: This leads to violence if you are a gay man. The disproportionate impact that the disease has on Latin American immigrants is in part perpetuated by cultural belief systems that prevent open conversations on sexual behavior such as forbidding speaking about sex at home or lack of exposure to sexual education as children. Cultural and religious ideologies promote traditional gender roles in which women are expected to be submissive to their husbands and not question their sexual practices.
Mental and Physical Affects of Stigma
HIV stigma refers to irrational or negative attitudes, behaviors, and judgments towards people living with or at risk of HIV. It can negatively affect the health and well-being of people living with HIV by discouraging some individuals from learning their HIV status, accessing treatment, or staying in care. HIV stigma can also affect those at risk of HIV by discouraging them from seeking HIV prevention tools and testing, and from talking openly with their sex partners about safer sex options.
Populations disproportionately affected by HIV are also often affected by stigma due to, among other things, their gender, sexual orientation, gender identity, race/ethnicity, drug use, or sex work.
HIV stigma drives acts of discrimination in all sectors of society, including health care, education, the work place, the justice system, families, and communities.
Breaking down HIV stigma is a critical part of ending the HIV epidemic.
Internalized stigma is when a person with HIV experiences negative feelings or thoughts about themselves due to their HIV status. Almost 8 in 10 adults with HIV receiving HIV medical care in the United States report feeling internalized HIV-related stigma, according to a CDC study. Internalized stigma can lead to depression, isolation, and feelings of shame, and can affect individuals’ ability to stay adherent to their HIV medication.
HIV stigma and discrimination affect the emotional well-being and mental health of people living with HIV. People living with HIV often internalize the stigma they experience and begin to develop a negative self-image. They may fear they will be discriminated against or judged negatively if their HIV status is revealed.
“Internalized stigma” or “self-stigma” happens when a person takes in the negative ideas and stereotypes about people living with HIV and start to apply them to themselves. HIV internalized stigma can lead to feelings of shame, fear of disclosure, isolation, and despair. These feelings can keep people from getting tested and treated for HIV.
HIV stigma is rooted in a fear of HIV. Many of our ideas about HIV come from the HIV images that first appeared in the early 1980s. There are still misconceptions about how HIV is transmitted and what it means to live with HIV today.
The lack of information and awareness combined with outdated beliefs lead people to fear getting HIV. Additionally, many people think of HIV as a disease that only certain groups get. This leads to negative value judgements about people who are living with HIV.
It is true that HIV is no longer a death sentence, but fear, misinformation, and shame surrounding the disease remain and make the epidemic harder to contain. Stigma makes it harder to educate people about the disease, and stops people from seeking crucial treatment that saves lives and prevents its spread.
Americans are still seriously misinformed about HIV. The GLAAD and Gilead Science's 'State of HIV Stigma' Survey found that the public's knowledge of HIV is dangerously inaccurate and that they hold significant feelings of stigma towards people living with the disease. According to their study, only 60 percent of Americans believe that "HIV is a medical condition that can be treated," despite the fact that drugs treating HIV have been on the market for over a decade. Even more troubling, nearly 6 in 10 Americans wrongfully believe that "it is important to be careful around people living with HIV to avoid catching it."
Scientists have proven that HIV cannot be passed through healthy, unbroken skin, and people with HIV who take HIV medicine as prescribed and keep an undetectable viral load have virtually no risk of sexually transmitting HIV to their HIV-negative partners. Yet, this is not widely understood by the public and contributes to more people unnecessarily contracting the disease.
Efforts like the Gilead COMPASS Initiative and partnership with GLAAD are building grassroots support, but the media needs to do more. People have more access to information than ever before. It's on us to get it right.
We need better laws, better representation, and better conversations. Only by ending the stigma around HIV will we ever be able to truly end the epidemic.
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All graphics by Jaclyn Saik