HIV/AIDS: What You Need to Know

In the U.S., there's a good chance you could go a long time without hearing anything about HIV. Many schools aren't required to teach sexual education -- and of those that do, they're not required to teach accurate information. As a result, any knowledge you have about HIV might be solely from television or Google, both of which can unfortunately lead to you believing incorrect, and even harmful, information.

The reality is that HIV is a complex illness. It's a biological disease (a virus), but it has social and cultural causes -- as well as social and cultural impacts. When people talk about HIV, it's hard to talk about any one of these aspects without bringing up all of them. Here's a primer on all these different aspects of HIV and how they all fit together.

OK, What Exactly Is HIV?

HIV stands for human immunodeficiency virus. HIV only has one job: to make more HIV. When it enters a person's bloodstream, it hunts down a person's immune cells, injects its own genetic code into them, and hijacks the cells, forcing them to make more copies of the virus.

While these HIV-infected immune cells are busy making more copies of the virus, they can't do their previous job, which is helping defend your body from illnesses. That's why, in the early days of the epidemic, so many people with HIV succumbed to illnesses that a fully functioning immune system can usually fight.

How Do You Get HIV?

In order for HIV to go from one person to another, two things need to come into contact with each other:

1. a port of entry on a person's body
2. a fluid that contains live HIV

If a person who is living with HIV is taking HIV medications and their regimen is working well, they can't transmit the virus, because successful HIV treatment eliminates the virus in their fluids.

Common "ports of entry" include:

• an opening in the skin, like a bleeding cut or a puncture wound
• a mucous membrane, like the vagina or anus

These body fluids can potentially contain an infectious amount of HIV:

• Blood
• Breast milk
• Presemen
• Rectal fluid
• Semen
• Vaginal fluid

This means you can potentially get HIV through:

• Anal sex
• Injecting drugs with shared needles or works
• Vaginal sex

Infectious levels of HIV are not found in these fluids:

• Saliva
• Tears
• Urine

This means you cannot get HIV from:

• Kissing
• Mosquitoes
• Skin-to-skin contact, including a massage
• Sharing food or water
• Toilet seats

What's the Difference Between HIV (Human Immunodeficiency Virus) and AIDS (Acquired Immunodeficiency Syndrome)?

People often use HIV and AIDS interchangeably. But they are two different things!

• HIV is the name of a virus. When you are diagnosed as HIV positive, it means that there are copies of the virus in your bloodstream, indicating that HIV has taken control of some of your immune cells.
• AIDS is the name of a health condition. A person is diagnosed with AIDS if HIV goes untreated for too long in their body.
• HIV is the only cause of AIDS.
• It usually takes many years of living with HIV and not taking HIV medications to develop AIDS.

In the early years of the HIV epidemic, most people living with HIV eventually developed AIDS -- and AIDS was often considered a death sentence. Today, once a person receives an AIDS diagnosis, they can take medication and get better, but because of how medical definitions work, the official diagnosis remains.

The term AIDS -- which is short for acquired immunodeficiency syndrome -- has a very specific medical definition. To be considered as having AIDS, one of these two things must be true:

1. Your CD4 count is below 200 cells/mm3. CD4 cells are part of the body's immune system. They're a type of immune cell called a T cell, and they're responsible for fighting off infections in your bloodstream. A CD4 count is a test that looks at the number of CD4 cells in your blood.
2. You develop an "AIDS-defining condition," one of about two dozen specific illnesses (including several cancers and bacterial, fungal, or viral infections) that can be fatal for people with a weakened immune system.

During the 1980s and 1990s, when HIV/AIDS first became a huge health scare, AIDS was considered the final or end stage of HIV infection. But that was during a time when effective HIV treatment was still being developed. These days, HIV medications can -- and often do -- raise even some of the lowest CD4 counts back above 200, and can help the body fight off AIDS-defining conditions.

Who Gets HIV?

Anyone can get HIV. A friend, a cousin, a colleague, or a partner. Regardless of a person's physical characteristics or identity, to transmit HIV, there only needs to be a fluid that contains HIV and a port of entry.

In the U.S., HIV is still often thought of as an illness that mostly or only affects gay people. And it's true that most new infections are occurring among gay men. But HIV isn't a "gay disease"; instead, the virus tends to thrive wherever discrimination and poverty are at their highest -- and access to safe housing and good health care is at its lowest.

In the U.S., the groups most heavily impacted by HIV are:

1. Transgender women
2. Gay men
3. Black people
4. Latinx people
5. Other people of color, including Native American/indigenous people
6. People living with disabilities
7. People living in southeastern states

Racism and other inequalities put people of color, especially black people living in the southeastern U.S., at a much higher-than-average risk for HIV. While it's easy to say that a person's health is their own responsibility, there are often many factors at play. In fact, a person's risk for various illnesses -- including HIV -- is based in part simply on whether they're born in an impoverished zip code.

Worldwide, if you want to find the highest rates of HIV, look in areas that are struggling to deal with legacies of colonialism, racism, and other societal instability. Some of the highest HIV rates in the world are among people living in countries that were once colonized and are still underdeveloped, including much of Africa and South Asia.

Your race, sexuality, country of origin, and any other personal identity or characteristic do not carry an inherent risk for one day living with HIV. However, anyone with a marginalized identity is put at increased risk for HIV infection, given the many unfair health care biases in our world.

What Are the Symptoms of HIV?

There's no single, reliable sign or symptom of HIV infection. This is why the only trustworthy way to know whether you have HIV is to get an HIV test.

The symptoms a person with HIV might experience depend on how long they've been living with the virus, and whether or not they're on treatment. There are three major stages of HIV infection:

• acute infection (a.k.a. primary infection)
• chronic infection
• advanced HIV disease (AIDS)

Acute Infection

Also called primary infection, this phase typically lasts between a few days and a few weeks after a person gets HIV.

Symptoms of acute HIV infection are common -- but they're not a guarantee, and they can be hard to tell apart from a cold or the flu. They might include any of the following:

• Achy muscles
• Chills
• Fever
• Mouth sores
• Night sweats
• Skin rashes
• Sore throat
• Swollen lymph nodes
• Tiredness

If a person feels any symptoms from acute HIV infection, they usually go away by themselves within a few days or weeks -- about the same amount of time it takes to get over a cold or the flu.

Chronic Infection

This phase begins after the acute infection period ends. Chronic infection can last up to a decade or more if a person doesn't begin HIV treatment, and indefinitely if they are taking HIV medications.

There are usually no symptoms of chronic HIV infection. This is because HIV harms the immune system slowly, degrading it over a span of many years. If left untreated, the virus will continue to take over CD4 cells, turning them into HIV factories. But when a person begins HIV treatment, the medications stop HIV from taking over any more CD4 cells. This usually allows a person's immune system to recover -- or, if they begin treatment early enough after infection, to avoid most of the damage HIV can cause.

If they're on successful treatment, a person living with HIV can remain in the chronic stage indefinitely. In fact, many people living with HIV now live a normal lifespan thanks to HIV medications.

Advanced HIV Disease

When people living with HIV go a long time without HIV treatment -- usually 10 years or more -- they'll usually enter the advanced infection phase, which is life-threatening. This is the stage when a person is diagnosed with AIDS.

Symptoms of advanced HIV disease vary widely, because HIV itself isn't usually what causes the symptoms. Instead, those symptoms are caused by some other infection or disease that has taken root in the body because the immune system can no longer protect it.

If you've watched older movies, documentaries, or TV shows about HIV, late-stage HIV is often the stage you'll see depicted, because it's the most dramatic. During the worst years of the AIDS epidemic in the U.S. (in the 1980s and first half of the 1990s), there were a few symptoms that were most commonly seen in people with advanced HIV disease:

• Extremely gaunt appearance (caused by wasting syndrome, a metabolic disorder)
• Dark spots on the skin (caused by Kaposi sarcoma, a type of cancer)
• Extensive white lesions in the mouth (caused by candidiasis, a fungal infection)

These depictions of AIDS may make it feel like HIV is a fatal illness that deteriorates the body. But with modern HIV treatment, that's not the case.

Where Did HIV Come From?

We tend to think of HIV and AIDS as things that have only existed since the 1980s. But the truth is that they've existed much longer than that. There's a lot about the origins of HIV that scientists are still trying to determine, but here's what we know right now.

The global HIV pandemic appears to have started in the 1920s in central Africa. The original center of the pandemic was probably Kinshasa, which today is the capital city of the Democratic Republic of the Congo (DRC).

HIV didn't just suddenly blink into existence in Kinshasa. It evolved from another virus that's been in apes for thousands of years, if not longer: SIV (the S is short for "simian"). SIV most likely mutated into HIV through a common practice at the time: chimpanzee hunting. Humans hunted chimps for their meat -- and since hunting involved the use of knives and swords, SIV-infected blood may have gotten into an open human wound.

Kinshasa was a major hub for goods and services in the mid-1900s, so after many years as a local (and invisible) epidemic, HIV eventually spread to other parts of the world -- including Haiti in the 1960s, when many Haitians worked in the DRC. From Haiti, HIV came to the U.S.

HIV has probably been in the U.S. since the 1970s, but the first documented case was in 1981.

How Can I Prevent HIV?

If you are HIV negative and want to know how to prevent HIV acquisition, know that you have quite a few options.

The first thing you should know is that if you are having sex with someone living with HIV who is on medication and has an undetectable viral load, there is no risk of you acquiring the virus. There are two commonly used terms for this: "undetectable equals untransmittable" (or U=U for short) and "treatment as prevention."

Aside from relying on treatment, HIV-negative people have an array of options that can empower them to stay HIV negative. Since HIV needs a port of entry and a fluid containing the virus in order for infection to occur, most methods of protection aim at one or the other.

These options break down into three categories:

• barrier protection
• biomedical prevention
• syringe exchange (or harm reduction)

Barrier Protection

Barrier protection puts a physical barrier between a person and a fluid containing HIV. The most popular methods include insertive condoms and receptive condoms.

• Insertive condoms are worn by insertive partners -- for example, a person who puts their penis into another person's anus or vagina.
• Receptive partners can wear receptive condoms in their anus or vagina.

Biomedical Prevention

While barriers make sure people don't come into contact with fluid containing HIV, biomedical prevention stops HIV-containing fluid from gaining a foothold in a person's body. There are two types of biomedical intervention: PrEP and PEP.

• PrEP, short for pre-exposure prophylaxis, is prescription medication a person takes before a sexual encounter. It can be taken daily or in an "on-demand" schedule.
• PEP, short for post-exposure prophylaxis, is a month-long course of prescription HIV medications meant to prevent infection. If you think you have been exposed to HIV through sex, for example, you can begin PEP within 72 hours after the act.

Syringe Exchange

If you inject drugs, several states in the U.S. have programs where you can exchange used needles and syringes for fresh ones to reduce the risk of HIV transmission.

How Does HIV Testing Work?

The only way to learn for sure whether you're HIV positive or HIV negative is by getting an HIV test. In most of the U.S., it's about as easy to get an HIV test as it is to get a pregnancy test.

HIV testing is recommended as a routine part of health care for everyone in the U.S. between age 13 and age 64. More frequent testing (at least once a year, if not more) is recommended for people who are sexually active (regardless of whether it's anal or vaginal sex, or whether you're giving or receiving), especially if it's with multiple partners. Ditto for people who share injection drug equipment with anyone else.

There are three main types of HIV tests:

• At-home HIV tests. These are kits you can order online or pick up at a local pharmacy. Using a tiny sample of saliva or blood, they'll give you a preliminary test result -- if it's positive, you'll want to follow up with a health care provider for a confirmatory test.
• Rapid HIV tests. These are saliva or blood tests that a health care provider can give you; they provide a preliminary result in less than half an hour. If a rapid test comes up positive, your care provider will take a blood sample for a more thorough confirmatory test.
• Confirmatory HIV tests. All HIV tests are accurate, but confirmatory tests do the best job at rooting out "false positives," which can happen rarely with at-home and rapid tests. A health care provider will take a sample of your blood and send it to a lab for in-depth testing; results can take up to a couple of weeks to come back.

If you were very recently exposed to HIV -- as in, within the past couple of weeks -- an HIV test may not be able to spot your infection. That's because it takes several days for the virus to make its way through your immune system and begin to create new copies of itself -- and weeks or months for your body to begin developing its own antibodies to fight off the HIV. (Some HIV tests work by detecting the virus itself, while others work by detecting the HIV antibodies your body creates.)

This is why, if you're concerned that a specific event happened to put you at risk for HIV, experts recommend that you:

• Talk to a health care provider immediately -- within 72 hours, if possible! -- about the possibility of starting PEP, or post-exposure prophylaxis. PEP can prevent an HIV exposure from becoming an infection.
• Wait to get tested for HIV until it's been more than two weeks since the risky event.
• Talk to a health care provider about whether an HIV prevention prescription -- also known as PrEP, or pre-exposure prophylaxis -- might be right for you.

Is There a Cure for HIV?

No, there is no cure. But thanks to science, people who are living with HIV often live long, healthy lives.

There is an extremely small number of cases where a person with HIV was cured of their infection with a type of stem-cell transplant. But these cases can't be replicated on a large scale: The transplants are extremely difficult to do, and they're potentially deadly. Since HIV treatment works incredibly well, there's no need for a life-threatening, risky procedure to try curing it.

Meanwhile, researchers across the world are exploring a number of different potential ways to cure HIV more safely and reliably. But we're probably still many years away from having a cure.

Many HIV activists also feel that, even if there is a cure, there may be unequal access to it -- as there currently is with the cure for hepatitis C.

Will HIV Affect How I Live My Daily Life?

An HIV infection does have consequences for your body, but those can be taken care of by taking medication prescribed by a health care professional daily. But what about your mental health and well-being?

While the medical community has worked hard to make HIV a manageable, chronic illness, our society still has a long way to go in eradicating HIV stigma and making the lives of people living with HIV easier.

HIV stigma is a term that refers to the negative and unfounded ideas about HIV that people have due to myths, misinformation, and outdated attitudes associated with the illness. Here are some examples of stigma:

• Treating someone with HIV differently than you would treat someone who is HIV negative.
• Using the word "clean" to denote being HIV negative.
• Believing all gay people have HIV.
• Believing that having HIV makes you less worthy or desirable than another person.

When a person adopts these ideas, they can in turn create shame and fear for people living with HIV, or what we might call internalized HIV stigma. HIV stigma can have terrible consequences. It can deter people from getting tested in the first place. It can lead people to avoid health care or to receive worse health care than they deserve, resulting in poorer physical and mental health. People with HIV also face disproportionate levels of intimate partner violence because of their status.

When a person acts out their stigma against someone living with HIV, it can lead to discrimination. In the U.S., there are laws relating to HIV -- some that help with discrimination, but some that hurt.

Helpful: HIV is a protected health status, and an employer cannot fire someone for living with HIV.

Hurtful: As of 2018, 26 states have laws that make HIV exposure a crime. While there have been legislative victories in some states, including Iowa and Colorado, the reality is that many states still prosecute people with HIV, even in cases where there was no HIV transmission.

Beyond these issues, people living with HIV have a lot to manage in order to stay healthy and happy. But with a clear plan, access to good health care, successful HIV treatment, and a strong support network, the virus can become just another fact of life -- a life that doesn't have to be one day shorter because of their HIV status.