HIV and Stigma



What Are HIV and AIDS?

HIV is a virus spread through certain body fluids that attacks the body’s immune system, specifically the CD4 cells, often called T cells. Over time, HIV can destroy so many of these cells that the body can’t fight off infections and disease. These special cells help the immune system fight off infections. Untreated, HIV reduces the number of CD4 cells (T cells) in the body. This damage to the immune system makes it harder and harder for the body to fight off infections and some other diseases. Opportunistic infections or cancers take advantage of a very weak immune system and signal that the person has AIDS. Learn more about the stages of HIV and how to know whether you’re infected.

What Is HIV?
HIV stands for human immunodeficiency virus. It is the virus that can lead to acquired immunodeficiency syndrome, or AIDS, if not treated. Unlike some other viruses, the human body can’t get rid of HIV completely, even with treatment. So once you get HIV, you have it for life.

HIV attacks the body’s immune system, specifically the CD4 cells (T cells), which help the immune system fight off infections. Untreated, HIV reduces the number of CD4 cells (T cells) in the body, making the person more likely to get other infections or infection-related cancers. Over time, HIV can destroy so many of these cells that the body can’t fight off infections and disease. These opportunistic infections or cancers take advantage of a very weak immune system and signal that the person has AIDS, the last stage of HIV infection.

No effective cure currently exists, but with proper medical care, HIV can be controlled. The medicine used to treat HIV is called antiretroviral therapy or ART. If taken the right way, every day, this medicine can dramatically prolong the lives of many people infected with HIV, keep them healthy, and greatly lower their chance of infecting others. Before the introduction of ART in the mid-1990s, people with HIV could progress to AIDS in just a few years. Today, someone diagnosed with HIV and treated before the disease is far advanced can live nearly as long as someone who does not have HIV.

What Is AIDS?
AIDS is the most severe phase of HIV infection. People with AIDS have such badly damaged immune systems that they get an increasing number of severe illnesses, called opportunistic infections.

What Are the Stages of HIV Infection?
Without treatment, HIV advances in stages, overwhelming your immune system and getting worse over time. The three stages of HIV infection are: (1) acute HIV infection, (2) clinical latency, and (3) AIDS (acquired immunodeficiency syndrome).

However, there’s good news: by using HIV medicines (called antiretroviral therapy or ART) consistently, you can prevent HIV from progressing to AIDS. ART helps control the virus so that you can live a longer, healthier life and greatly reduces the risk of transmitting HIV to others.

Acute HIV Infection Stage
Within 2 to 4 weeks after infection, many, but not all, people develop flu-like symptoms, often described as “the worst flu ever.” Symptoms can include fever, swollen glands, sore throat, rash, muscle and joint aches and pains, and headache. This is called “acute retroviral syndrome” (ARS) or “primary HIV infection,” and it’s the body’s natural response to the HIV infection. People who think that they may have been infected recently and are in the acute stage of HIV infection should seek medical care right away. Starting treatment at this stage can have significant benefits to your health.

During this early period of infection, large amounts of virus are being produced in your body. The virus uses CD4 cells to replicate and destroys them in the process. Because of this, your CD4 cells can fall rapidly. Eventually your immune response will begin to bring the level of virus in your body back down to a level called a viral set point, which is a relatively stable level of virus in your body. At this point, your CD4 count begins to increase, but it may not return to pre-infection levels. It may be particularly beneficial to your health to begin ART during this stage.

During the acute HIV infection stage, you are at very high risk of transmitting HIV to your sexual or needle-sharing partners because the levels of HIV in your blood stream are extremely high. For this reason, it is very important to take steps to reduce your risk of transmission.

Clinical Latency Stage
After the acute stage of HIV infection, the disease moves into a stage called the “clinical latency” stage. “Latency” means a period where a virus is living or developing in a person without producing symptoms. During the clinical latency stage, people who are infected with HIV experience no symptoms, or only mild ones. (This stage is sometimes called “asymptomatic HIV infection” or “chronic HIV infection.”)

During the clinical latency stage, the HIV virus continues to reproduce at very low levels, even if it cannot be detected with standard laboratory tests. If you take ART, you may live with clinical latency for decades and never progress to AIDS because treatment helps keep the virus in check. (Read more about HIV treatment.)

People in this symptom-free stage are still able to transmit HIV to others, The risk of transmission is greatly reduced by HIV transmission. In studies looking at the effects of HIV treatment on transmission, no new HIV infections have been linked to someone with very low or undetectable (suppressed) viral load.

For people who are not on ART, the clinical latency stage lasts an average of 10 years, but some people may progress through this stage faster. As the disease progressions, eventually your viral load will begin to rise and your CD4 count will begin to decline. As this happens, you may begin to have constitutional symptoms of HIV as the virus levels increase in your body before you develop AIDS.

AIDS
This is the stage of HIV infection that occurs when your immune system is badly damaged and you become vulnerable to opportunistic infections. When the number of your CD4 cells falls below 200 cells per cubic millimeter of blood (200 cells/mm3), you are considered to have progressed to AIDS. (In someone with a healthy immune system, CD4 counts are between 500 and 1,600 cells/mm3.) You are also considered to have progressed to AIDS if you develop one or more opportunistic illnesses, regardless of your CD4 count.

Without treatment, people who progress to AIDS typically survive about 3 years. Once you have a dangerous opportunistic illness, life-expectancy without treatment falls to about 1 year. ART can be helpful for people who have AIDS when diagnosed and can be lifesaving. Treatment is likely to benefit people with HIV no matter when it is started, but people who start ART soon after they get HIV experience more benefits from treatment than do people who start treatment after they have developed AIDS.

In the United States, most people with HIV do not develop AIDS because effective ART stops disease progression. People with HIV who are diagnosed early can have a life span that is about the same as someone like them who does not HIV.

People living with HIV may progress through these stages at different rates, depending on a variety of factors, including their genetic makeup, how healthy they were before they were infected, how much virus they were exposed to and its genetic characteristics, how soon after infection they are diagnosed and linked to care and treatment, whether they see their healthcare provider regularly and take their HIV medications as directed, and different health-related choices they make, such as decisions to eat a healthful diet, exercise, and not smoke.

Is There a Cure for HIV?
No effective cure currently exists for HIV. But with proper medical care, HIV can be controlled. Treatment for HIV is called antiretroviral therapy or ART. If taken the right way, every day, ART can dramatically prolong the lives of many people infected with HIV, keep them healthy, and greatly lower their chance of infecting others. Before the introduction of ART in the mid-1990s, people with HIV could progress to AIDS (the last stage of HIV infection) in a few years. Today, someone diagnosed with HIV and treated before the disease is far advanced can live nearly as long as someone who does not have HIV.

HIV Among Gay and Bisexual Men

Fast Facts

  • Gay and bisexual men are more severely affected by HIV than any other group in the United States.
  • From 2005 to 2014, HIV diagnoses decreased in the United States by 19% overall, but increased 6% among all gay and bisexual men, driven by increases among African American and Hispanic/Latino gay and bisexual men.
  • Over the past 5 years (2010-2014), the increase in HIV diagnoses among all gay and bisexual men was less than 1%, although progress has been uneven among races/ethnicities.

Gay, bisexual, and other men who have sex with mena made up an estimated 2% of the population but 55% of people living with HIV in the United States in 2013. If current diagnosis rates continue, 1 in 6 gay and bisexual men will be diagnosed with HIV in their lifetime, including 1 in 2 black/African Americanb gay and bisexual men, 1 in 4 Hispanic/Latinoc gay and bisexual men, and 1 in 11 white gay and bisexual men. But these rates are not inevitable. We have more tools to prevent HIV than ever before.

The Numbers
HIV and AIDS Diagnosed In 2014:

  • Gay and bisexual men accounted for 83% (29,418) of the estimated new HIV diagnoses among all males aged 13 and older and 67% of the total estimated new diagnoses in the United States.
  • Gay and bisexual men aged 13 to 24 accounted for an estimated 92% of new HIV diagnoses among all men in their age group and 27% of new diagnoses among all gay and bisexual men.
  • Gay and bisexual men accounted for an estimated 54% (11,277) of people diagnosed with AIDS. Of those men, 39% were African American, 32% were white, and 24% were Hispanic/Latino.

Although HIV diagnoses increased among gay and bisexual men overall from 2005 to 2014—and increased sharply among African American and Hispanic/Latino gay and bisexual men—diagnoses overall have stabilized in more recent years:

From 2010 to 2014, diagnoses increased less than 1% among all gay and bisexual men overall and among African American gay and bisexual men.

  • Diagnoses:
    • Declined 6% among white gay and bisexual men.
    • Increased 13% among Hispanic/Latino gay and bisexual men.
  • From 2010 to 2014, among young (aged 13 to 24) gay and bisexual men, diagnoses:
    • Declined 2% among young African American gay and bisexual men.
    • Declined less than 1% among young white gay and bisexual men.
    • Increased 16% among young Hispanic/Latino gay and bisexual men.

Living With HIV

  • At the end of 2013, 687,800 gay and bisexual men were living with HIV. Of those, 15% were unaware of their infection.
  • Among gay and bisexual men diagnosed with HIV infection in 2014, 84% were linked to medical care within three months of diagnosis.
  • During 2013, 57% of gay and bisexual men who had been living with diagnosed HIV for at least a year were retained in care (receiving continuous HIV medical care) and 58% had a suppressed viral load (a very low level of the virus).

Prevention Challenges

  • Gay and bisexual men continue to experience the greatest burden of HIV compared to any other group in the United States. Therefore gay and bisexual men have an increased chance of being exposed to HIV. A 2016 analysis estimated that there are nearly 4.5 million gay and bisexual men in the United States and that 15% are living with HIV infection (11% diagnosed).
  • Nearly 1 in 7 gay and bisexual men living with HIV are unaware they have it. People who don’t know they have HIV cannot get the medicines they need to stay healthy and reduce the likelihood of transmitting HIV to their partners. Therefore, they may transmit the infection to others without knowing it.
  • Most gay and bisexual men acquire HIV through having anal sex with an HIV-positive person without using a condom or without taking daily medicine to prevent HIV called pre-exposure prophylaxis (PrEP) or without their partner taking medicine to treat HIV called antiretroviral therapy (ART). Anal sex is the riskiest type of sex for getting or transmitting HIV. Receptive anal sex is 13 times as risky for acquiring HIV as insertive anal sex. Using condoms the right way every time and taking medicines to prevent or treat HIV each can reduce the risk of getting or transmitting HIV. Combining 2 or more options provides more protection from HIV and condoms also protect from some sexually transmitted diseases (STDs).
  • Gay and bisexual men are also at increased risk for other STDs, like syphilis, gonorrhea, and chlamydia.
  • Homophobia, stigma, and discrimination may place gay and bisexual men at risk for multiple physical and mental health problems and affect whether they seek and are able to obtain high-quality health services.
What is stigma?

Stigma means different things to different people.

This is one dictionary’s definition: “The shame or disgrace attached to something regarded as socially unacceptable.

There may be a feeling of ‘us and them’. People who are stigmatised are marked out as being different and are blamed for that difference.

HIV is an infection which many people have fears, prejudices or negative attitudes about. Stigma can result in people with HIV being insulted, rejected, gossiped about and excluded from social activities.

Fear of this happening can lead to people with HIV being nervous about telling others that they have HIV or avoiding contact with other people. They may end up suffering in silence instead of getting the help they need.

Stigma can also result in people with HIV believing the things that other people say about HIV. For example, they may think it’s true that HIV is a death sentence or that most people with HIV are immoral or irresponsible.

Stigma is often attached to things people are afraid of. Ever since the first cases of AIDS in the early 1980s, people with HIV have been stigmatised. There are a number of reasons for this:

  • HIV is a serious, life-threatening illness. There is a long history of illnesses being stigmatised – cancer and tuberculosis are two other examples.
  • People who don’t understand how HIV is transmitted may be afraid of ‘catching’ it through social contact.
  • Some people have strong views about sexual behaviour. They may think that there are situations in which sex is wrong or that certain people shouldn’t behave in particular ways.
  • The way people think about HIV depends on the way they think about the social groups that are most affected by HIV. Some people already have negative feelings about women, gay men, immigrants, black people, drug users and others.

Stigma leads to people not being treated with dignity and respect.

HIV stigma divides and fragments gay communities

A review of research studies has identified a growing division within gay communities, in which HIV-negative gay men associate mainly with other HIV-negative men, and HIV-positive men mostly mix with other HIV-positive men. Moreover stigma has negative impacts on the health of both HIV-positive and HIV-negative men, say the authors, writing in the online edition of AIDS Care.

Stigma has been defined as ‘‘a process of devaluation of people either living with, or associated with, HIV and AIDS’’. The majority of the research literature on stigma deals with the attitudes of the general population, but the authors wished to draw attention to and pull together reports concerning the stigmatisation of HIV-positive men within communities of gay men.

They describe this literature as “fragmented and largely anecdotal” – and call for more empirical research – but have identified multiple references to stigma that affects gay and bisexual men.

  • Seven out of ten gay male respondents to a Dutch survey had experienced stigma on the gay scene.
  • HIV-positive men perceive a ‘‘rift’’ based on HIV status within their gay community.
  • Fear of rejection by potential sexual partners is widely reported and causes long-lasting harm to the self-confidence and self-esteem of men with HIV.
  • Older men with HIV feel particularly under-valued, believing that they are at the “lowest rung” of the “gay social hierarchy”, resented for supposedly being dependent on social benefits that are no longer available to younger men with HIV.
  • Body fat changes and other physical manifestations of HIV and its treatment are regarded as unattractive. Men with such symptoms report a loss of intimacy and the avoidance of particular social spaces because they feel self-conscious or fear rejection.
  • In the United States, black gay men are perceived to be at higher risk of having HIV compared to men of other ethnicities, and are sometimes avoided as sexual partners for that reason.
  • Stigma has a considerable impact on mental and emotional well-being, leading to anxiety, loneliness, depression, thoughts of suicide and avoidance strategies such as social withdrawal.
  • Men who only disclose their HIV-status to a limited support network often feel socially isolated.
  • Some gay men with HIV report keeping social and sexual distance from other HIV-positive men, feeling that being associated with HIV-positive sexual spaces (either online or offline) would compound stigma directed against them.
  • HIV-positive men who identify as ‘barebackers’ tend to report greater stigma, gay-related stress, self-blame and substance abuse coping.
  • Men reporting discrimination from sexual partners and breaches of confidentiality are less likely to adhere to their medication.
Seven Important things we can do to reduce Stigma and Discrimination

1. Know the facts.
Educate yourself about HIV/AIDS!

2. Be aware of your attitudes and behaviour
We’ve all grown up with prejudices and judgmental thinking. But we can change the way we think! See people as unique human beings, not as labels or stereotypes. See the person beyond their illness; they have many other personal attributes that do not disappear just because they also have a mental illness.

3. Choose your words carefully
The way we speak can affect the way other people think and speak. Don’t use hurtful or derogatory language.

4. Educate others
Find opportunities to pass on facts and positive attitudes about people with HIV. If your friends, family, co-workers or even the media present information that is not true, challenge their myths and stereotypes. Let them know how their negative words and incorrect descriptions affect people with HIV by keeping alive the false ideas.

5. Focus on the positive
People with HIV make valuable contributions to society. Their health problems are just one part of who they are. We’ve all heard the negative stories. Let’s recognize and applaud the positive ones.

6. Support people
Treat people who have HIV with dignity and respect. Think about how you’d like others to act toward you if you were in the same situation. If you have family members, friends or co-workers with HIV, support their choices and encourage their efforts to get well.

7. Include everyone
Denying people access to things such as jobs, housing and health care, which the rest of us take for granted, violates human rights.

How HIV and Stigma Affect Mental Health

HIV is still a jarring enough diagnosis to plunge a patient into depression. With a chronic condition like HIV, depression can fuel additional problems, such as failure to take life-saving antiretroviral medications.

In a day and age when the disease is manageable, it pains mental health professionals to see HIV-positive patients in the depths of depression. When depression is paired with HIV, the two diseases can feed off of one another.

A 2001 meta-analysis of studies on HIV and depression underscored the severity of the problem. It showed that people with HIV run twice the risk of depression as those who are at-risk for HIV but remain uninfected.

Jeffrey Newman is a New York City man with HIV who runs a website called Positively Jeffrey. The site encourages all people, not only those with HIV, to live life positively. He has seen the impact of HIV and depression and maintains his site and Facebook pages to do his part to beat it back.

Newman remembers learning about his own HIV status. “I chose to embrace it and I refuse to allow it to control my destiny, my happiness, or who I was or would be,” he told Healthline. “Gratitude is such a simple concept, and yet it’s one of the most powerful, inspiring, life-affirming, and mentally healthy things we can do to make our lives better. Dwelling on the negative accomplishes nothing.”

Depression Casts a Wide Net
In Los Angeles, depression and HIV make life hard for young and old alike. On the one hand are young people ravaged by substance abuse who turn up positive. On the other are older adults who have lived longer with HIV than they ever expected to. They have also been sick for many years and may have been unable to save enough money for retirement.

HIV-positive women are the most likely of all to suffer from depression, according to research presented at the 2nd International Workshop on HIV & Women in 2012 in Bethesda, Maryland.

“The new group … who are testing positive … live in rural America and places that aren’t as progressive or accepting and … feel that HIV is still a death sentence. They get diagnosed and slip into a great depression, and start drinking or using substances to ease the pain.” — Jeffrey Newman

There are other HIV-positive groups facing problems with depression too, Newman pointed out.

“The new group of the population who are testing positive, who don’t live in places like New York City or Los Angeles or San Francisco. They live in rural America and places that aren’t as progressive or accepting and don’t have access to information, and feel that HIV is still a death sentence,” he said. “They get diagnosed and slip into a great depression, and start drinking or using substances to ease the pain.”

Shame, Guilt Over Testing Positive
Some people become overwhelmed with shame when they learn they are HIV-positive, said Mike Rizzo, manager of crystal methamphetamine addiction and recovery services at the Los Angeles LGBT Center. “Especially nowadays when we know how to prevent [HIV] and people still are getting infected,” he said. “There is shame, guilt, and remorse.”

Keeping your status a secret isn’t an option for sexually active people because of disclosure laws that vary by state. So learning to come to grips with disclosure is another stress trigger for an HIV-positive person. “I’m also diabetic, but I don’t have to disclose to anyone that I’m diabetic,” said Rizzo. “I’m about to engage in a behavior where I’ve got to tell somebody that I’m HIV-positive, and the rejection that may follow that.”

“In regards to homeless youth, it really is a survival drug,” Rizzo said of crystal meth. “It helps them stay awake all night so they are safer on the streets. It staves off hunger and thirst.”

Some of these young men also get by on so-called “survival sex,” Rizzo explained. The meth helps them stay in a world of denial. “If I’m walking the boulevard I’m not actually living on the boulevard,” he said. “If I don’t curl up under a bush or am not sleeping under an overpass, I’m not actually homeless.”

 

When Taking Medication Doesn’t Seem to Matter
Paradoxically, a second major problem with depression and HIV is that those who are depressed may stop taking their antiretroviral medication to keep HIV under control, according to a 2011 study. This not only affects their personal health but also allows the virus to replicate and be transmitted more easily to others.

In Los Angeles, some drug and alcohol-addicted young men sell their prescription pills for Truvada to prevent HIV infection on the street. Sometimes it’s just medication fatigue, plain and simple, explained Rizzo.

“The simple process of taking the meds on a daily basis becomes a constant reminder of what you’re dealing with. I think without appropriate support that can be very hard on an individual.” — Mike Rizzo, Los Angeles LGBT Center

“Being HIV-positive is not a fun lifestyle,” he said. “The simple process of taking the meds on a daily basis becomes a constant reminder of what you’re dealing with. I think without appropriate support that can be very hard on an individual.”

Facts About HIV: Life Expectancy and Long-Term Outlook »