Tonight we discuss the issue of HIV stigma. I am not an expert on this area. In fact, this is a bit removed from my area of research. However, I've spent the last few days researching the issue of HIV stigma, pulling from the psychological literature, polling data, and statistics from HIV/AIDS organizations. I will attempt to provide you with an overview of what HIV stigma is, its psychological antecedents, and the consequences of stigma.
Throughout the diary, I'm going to use the acronym PLWHA to denote "persons living with HIV/AIDS".
What is HIV Stigma?
In one of the seminal works on HIV stigma in the psychology literature, Herek (1999) defines AIDS-related stigma as
a term that refers to prejudice, discounting, discrediting, and discrimination directed at people perceived to have AIDS or HIV, and the individuals, groups, and communities with which they are associated.
I think this PSA from the British Red Cross illustrates it quite well:
When psychologists study HIV stigma, they usually conceptualize it as assignment of negative stereotypes, attributions of guilt to PLWHA, social-distancing from PLWHA, and endorsing restrictive political measures aimed at PLWHA.
There are a few different theories about the antecedents of HIV stigma. There is evidence for a stigma of disease, in general. Feldman (1986) found that cancer patients and even their caregivers have experienced dismissal and ostracisim from others. But the very nature of HIV/AIDs lends itself to great stigma--it is a diseased that passed through "immoral means". In a series of experiments, Young, Nussbaum, and Monin (2007) showed that participants felt that somebody who contracted a hypothetical STD was less moral than somebody who contracted the same hypothetical disease through non-stigmatized means. This was true even when the researchers depicted the STD as something contracted through sex 5% of the time and non-stigmatized means 95% of the time. They also found that participants understated their risk of getting the disease and were less willing to be tested for it, if the disease was depicted as one transmitted via unsafe sexual practices.
Herek (1999) argues that HIV/AIDS has four characteristics that make it likely to evoke stigma. First, a disease is more likely to be stigmatized if the person with the disease is perceived as having caused it to happen (see also: obesity). Second, stigmas are more likely to be attached to diseases that are "unalterable or degenerative" (see also: cancer). Third, a disease that is contagious and/or perceived as threatening the health of others is likely to be stigmatized. And finally, a disease that is not concealable is likely to evoke a stigma.
Compound upon this research which shows that people strongly associate AIDS with an already stigmatized sexual behavior--homosexuality. This relationship is driven, in part, by sexual prejudice. People who are high in homophobia are more likely to associate HIV/AIDS with homosexuality than those low in homophobia. They are also more likely to blame gay PLWHA for their disease than heteorosexual PLWHA.
But this isn't just about homophobia. von Collani, Grumm, and Streicher (2011) have shown that negative attitudes toward PLWHA are also fueled by false beliefs about transmission of HIV and personality. They found that right-wing authoritarians (RWA), people who endorse submission to authority, and people who are high in social dominance orientation, those who see and endorse society as a place with natural hierarchies of "superior" and "inferior", have more negative attitudes toward PLWHA. And these negative attitudes are fueled by their ignorance about how HIV is transmitted and homophobia.
Herek (2002) analyzed data from a large national survey and identified the five main predictors of HIV stigma.
The predictors in order of their relative contribution to the variation in stigma scores are as follows: false beliefs about casual contact, negative attitudes toward gay men, authoritarianism, age, and personal contact with people with AIDS.
What I had trouble nailing down was how pervasive HIV stigma is. The best I could find was a national poll conducted in 2006 (PDF) on HIV (described below in greater detail). When asked how much prejudice and discrimination PLWHA face, 45% of respondents said "A lot" and 36% said "Some".
Legal Protections for HIV+ Americans
The Americans with Disabilities Act
The Americans with Disabilities Act (ADA) is the most important federal protection from employment discrimination for HIV+ people. This law states that employers with at least 15 employees cannot fire, demote, or refuse to hire a person on account of his or her disability or the perception that he or she has a disability. Under the law, HIV+ persons are considered disabled. In 2008, the ADA was amended to broaden its scope and protections, making it easier for people with HIV to show that they are disabled. In addition, employers can no longer take mitigating measures (e.g., the positive effects of medication) into consideration in determining whether someone is disabled; in other words, your ability to cope with HIV-related symptoms does not affect your status as disabled within the ADA.
Protections Against Health Care Discrimination
The ADA protects HIV+ people from health care discrimination. State and local laws may also protect HIV+ people from health care discrimination. Under the laws, your doctor or dentist cannot refuse to treat you because you have HIV. Additionally, you do not have to disclose your HIV status to your doctor or dentist, however, in many instances it may be in your best interest to do so in order to maximize the effectiveness of your care and treatment. For instance, it is important for your doctor to know about any HIV medications you may be taking to avoid harmful interactions with other medications.
HIV+ people are protected from housing discrimination by the Fair Housing Act and by state and local laws. These laws say that landlords cannot discriminate against people with disabilities, including HIV+ people. Under the housing laws:
- A landlord cannot refuse to rent to someone because he or she is HIV+
- A landlord cannot try to evict a tenant because he or she is HIV+
- A landlord cannot harass or mistreat a tenant because he or she is HIV+
- A landlord may only evict an HIV+ person for legitimate reasons such as nonpayment of rent or breaking the terms of the lease
The Consequences of Stigma
Unfortunately, HIV stigma doesn't just manifest itself in forms that can be addressed by the legal reforms listed above. A recent report by the World Health Organization (WHO) indicates that HIV stigma actually deters people from getting tested. This means that at-risk individuals because they are embarrassed not only delay getting critical treatment, but they risk unknowingly infecting others. This is consistent with research in the psychological literature which shows that HIV stigma has deleterious effects on both testing and treatment (Chesney & Smith, 1999). HIV stigma deters at-risk individuals from getting tested, and if tested positive, can lead to/exacerbate emotional distress (depression, anxiety, suicide ideation). A study (PDF) completed by the Kaiser Family Foundation in 2009 showed that 16% of respondents expected to be stigmatized if they tested positive and that they were less likely than those who did not expect to be stigmatized to get tested.
Once PLWHA have tested positive, they have to decide when, how, and to whom to disclose their status. Although the research I've read is more than ten years old (Chesney & Smith, 1999), a news story by NY1 shows that PLWHA were keeping their status a secret, even from family members. And once they test positive, there evidence that suggests that PLWHA sometimes employ avoidant coping strategies, delaying treatment because of stigma.
But even in treatment, stigma and the disruptions to a social support network it causes, can effect health behaviors and outcomes. A recently published study shows that racial/ethnic minorities are more vulnerable than whites. Over a six month period, instances of HIV stigma, racism, and homophobia each predicted less adherence to the HIV treatment regimen.
This stigma may also feeding ignorance about HIV. The most recent large-scale poll of HIV knowledge (PDF) I could find was done five years ago--on the 25th anniversary of HIV (the 30th anniversary fell on Sunday). Only 29% of Americans were very or somewhat concerned about contracting HIV--the rates were higher among Blacks (51%) and Latinos (50%) than Whites (22%). The number of Americans who are ignorant about how infections occurs is stunning. 29% of believe that a person can be infected with HIV by kissing. Another 16% believe infection is possible by sharing a drinking glass and 10% believe that infection is possible by touching a toilet seat. A large-scale study recently conducted in the UK revealed the one in five Britons did not know that HIV could be spread during unprotected heterosexual sex. When provided with a list of possible routes to HIV transmission, only 30% of the sample was able to accurately identify all of the HIV transmission routes. Although an HIV positive woman has 99% chance of producing a healthy baby if certain precautions are taken, 47% of Britons said that there was no way to prevent HIV from spreading from mother to child in utero. And sadly, 19% of the respondents indicated that their relationship with a family member would be damaged if they tested positive.
This problem is even greater in poor communities. The HIV Law Project has found (PDF) that race, poverty, and HIV are inextricably linked. Across racial/ethnic groups, the likelihood of contractive HIV/AIDS increases as socio-economic status (SES) decreases. Given that poverty is higher among people of color, exposure to HIV is higher among Black Americans than White Americans. The HIV Law Project argues that poverty is actually driving the transmission of HIV.
These include: limited access to high-quality health care; the exchange of sex for money, drugs, or to meet other needs; higher levels of substance use; and higher rates of incarceration, particularly of Black men. Women are made further vulnerable as they may experience financial or other pressures that keep them tied to an abusive partner and unable to implement safe practices in their sexual relationships.
These are the consequences of HIV stigma -- delayed testing, emotional distress, impaired treatment, and ignorance. This only means more infections and more suffering, especially among those who are already most vulnerable in our society.
Erase the hate.
Erase the discrimination.
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