Positively Informed: An HIV/AIDS Roundup

Positively Informed: what you need to know to wise up about HIV and AIDS

What do you really know about HIV and AIDS? How sure are you that what you know is correct or complete, and how much do you think it matters that you know about HIV and AIDS at all?

This article isn't here to scare you: after all, most of you who have been sexually active are much more likely to end up with HPV, Herpes or Chlamydia than you are with HIV. But that doesn't mean it's smart to forget about HIV, or figure it's nothing you've got to know about, especially since unlike other, more common STIs, HIV/AIDS is one of the rare few that has the capacity to cause very serious long-term health problems and can even be fatal.

While it's less common for western teens than other sexually transmitted infections, it also isn't rare: in 2015, about 8,000 youth aged 13-24 were diagnosed with HIV in the United States. That’s one new HIV infection in young Americans for almost every hour of every day.

In the United States alone, about 22% of all new HIV diagnoses are in people of all sexes and orientations between the ages of 13 and 24. The most recent data from the Youth Risk Behavior Surveillance System, which is a nationwide survey of young people, found that only 10% of high school students have ever been tested for HIV. Low rates of HIV testing means there are a lot of young people who don’t know that they’re HIV positive – the CDC estimates that only 56% of HIV positive youth know their status.  Compare that to the United States as a whole – the CDC estimates that around 85% of HIV positive people total do know their status – and you can see that there’s a big gap in HIV testing between adults and youth.

There are many possible reasons why fewer youth are aware of their HIV status. A lack comprehensive sex ed in schools, fear of HIV stigma, and poor access to sexual health services are probably a major part of it. Among gay youth, awareness about HIV and the real risks posed has also been decreasing, and concerns about safer sex have decreased. That may well be in part because the overwhelming bias about gay men and HIV/AIDS was so extreme it had gay men of all ages in a very real state of panic for a long time, or because more focus -- as it should be -- has been put on other populations when it comes to HIV and AIDS, not just on gay men. But it's likely also in part because so many people with HIV seem to be doing just fine thanks to advanced drugs, and more dangerously, because in some gay populations, risking HIV is sometimes seen as a rite of passage, much like risking pregnancy is sometimes viewed among young straight women. But the risks to gay men -- the risks to anyone -- remain very real: around 81% of all new HIV diagnoses in young men are from men sleeping with men. (The same risks do not exist with young gay women: women-to-women HIV transmission is very rare.)

According to the Centers for Disease Control, at the end of 2015, an estimated 1.1 million people in the United States were living with HIV/AIDS. The CDC has estimated that approximately 40,000 persons in the United States become infected with HIV each year.

Latest stats from the CDC report that in 2014, about 70% of new HIV cases were in men who have sex with men, 23% were in heterosexual men and women, and 7% were in people who use injection drugs. The vast majority of HIV infections among all genders arise from sexual contact. So, no matter who we are, who we sleep with, or how safe we think we are, we can say pretty clearly that being ignorant about HIV and AIDS is a clear danger to our health and the health of those around us.

Because for so many years, information about HIV and AIDS was so biased, an unfortunate result of those biases has been that lots of folks have outdated or incorrect information about HIV. Let's debunk some myths and look at the facts.

What about HIV in transgender and non-binary folks? You’ll notice that a lot of the stats mentioned in this article talk about men and women. One of the impacts of transphobia – including transphobia among public health and medical researchers – is that we don’t have a ton of data on HIV among trans and non-binary folks. The CDC usually reports stats on HIV among “men” and “women” and often places trans people in the wrong gender categories. Sometimes data on trans women is reported separately, but data on trans men and non-binary folks is almost non-existent. Know that lack of data is a result of ignorance and stigma and does not mean that trans people are not seriously impacted by HIV – globally, trans people are about 49 times more likely to have HIV than the population as a whole. In the United States, it is estimated that around 20% of trans women and 3% of trans men are HIV positive.

You can spread AIDS through--

Might as well stop right there: you can't spread AIDS to someone else at all. You can only spread HIV person-to-person.

So, what IS HIV? And what is AIDS? Both are acronyms: HIV stands for Human Immunodeficiency Virus; AIDS for Acquired Immune Deficiency Syndrome. HIV is a virus people can and do spread around, and AIDS is a condition which people with HIV often eventually develop: without treatment, HIV often progresses to AIDS, and you can't wind up with AIDS without having contracted HIV first. AIDS is not contagious: HIV is. Neither are currently curable: once you've got HIV or AIDS, you've got them for life.

HIV attacks cells in your body called CD4 cells -- also known as T4 or T-helper cells. CD4 cells are a type of white blood cell that helps your body fight off infection and disease. Over time, HIV infects and kills these CD4 cells, making it harder for the body to fight infection. When a person with HIV loses too many CD4 cells, they are said to be “immunocompromised” or “immune deficient” and are given the diagnosis of AIDS (which is also known as HIV disease). People with AIDS often develop recurring health problems like pneumonia, diarrhea, and yeast infections. People with AIDS can also become seriously ill from infections that are not normally found in healthy people. These infections -- called “opportunistic infections” -- can lead to severe disability and death. Although you might hear of a person dying of HIV, it isn’t the HIV itself that kills people with AIDS – it’s the other infections (like pneumonia) that AIDS makes people vulnerable to.

If you can’t spread AIDS, how do you get HIV?

  • HIV is spread through 6 body fluids: blood, vaginal fluids, semen, pre-cum, rectal fluids, and breastmilk. To get HIV from one of these fluids, there are 4 things that need to happen.
  • HIV has to be present in the fluid. You can only get HIV from someone who is infected with HIV.
  • HIV needs to be present in a large enough quantity to cause an infection. HIV dies outside of the human body, so things like old, dried blood don’t spread HIV. Likewise, if someone is on treatment for their HIV and the amount of virus in their body is very low, they are unlikely to give you HIV.
  • HIV needs to get into your body. This can happen if fluids from someone with HIV get into your blood – like through a needlestick, cut, or open sore – or if fluids come into contact with the inside of your rectum, urethra, or vagina. You cannot get HIV from touching things like blood or semen with unbroken skin.
  • You need to be susceptible to HIV infection. Some things, like taking PrEP to prevent HIV infection, make you less susceptible. Other things, like having an untreated STI, make you more susceptible.

So why those 6 fluids, and why do they need to get into your blood? The cells that HIV attacks (those CD4 cells we mentioned) are a type of white blood cell. Fluids that contain white blood cells (including those 6 fluids) can transmit HIV while fluids that do not contain those cells (like spit and urine) cannot transmit HIV. And when HIV does get into your body, it needs to find some CD4 cells to attack in order to survive and make copies of itself. Those cells are easy to find in your blood, rectum, and genitals and even easier to find if you have an active STI (because white blood cells will be trying to fight off the infection).

So putting this all together: one of those 6 fluids from an HIV positive person needs to get inside of your body for you to get HIV. The vast majority of new HIV infections in the United States (around 91% as of 2016, according to the CDC) are from sexual contact. Sharing supplies for injection drug use is responsible for most the remaining infections. Infection through pregnancy and breastfeeding in Western countries is extremely rare due to modern medical methods of preventing parent-to-child transmission.

Sexual Transmission:

Bottoming for anal sex (having someone’s penis inside of your anus) is one of the most common ways of getting HIV. This is not because anal sex is “wrong” or “unnatural."  Anal sex presents an increased risk because anal and rectal tissue is more delicate than vaginal tissue and more likely to get tiny tears (microtears) or abrasions from sex. These microtears make it easier for HIV to get into the blood. The lining of the rectum also absorbs fluids (like semen) more easily than the lining of the vagina.

However, it’s important to know that vaginal tissue can have small tears as well, especially when we consider how many young people are having sex without lubricant and without responsive and gentle partners. Lubrication and tearing can be an especially big problem for trans men who take testosterone and have vaginal/frontal sex. Testosterone thins the lining of the vaginal/front-hole and can make bleeding and tearing during sex more likely.

For all genders of people, being sexually assaulted also increases the risk of HIV transmission due to lack of control over condoms and likelihood of cuts and tearing (forced or even consensual "rough" sex increases risks of HIV and other STI transmission: sexual violence plays a very big part in the HIV/AIDS pandemic).

Being a receptive partner for either kind of intercourse is considered higher risk than doing the entering because the person whose orifice(s) is being entered is usually exposed to more fluids over a larger area of the body, and because of possible tissue abrasions or tears. However, topping is definitely not risk-free. For a person with a penis who tops (enters via intercourse) an HIV-positive person, transmission happens when vaginal fluids, rectal fluids, and/or blood get inside the urethra during thrusting.

What about oral and manual sex like blowjobs, fisting, and fingering? All of these activities are considered low risk for HIV. Because HIV can’t get through unbroken skin, manual sex (which includes fisting, fingering, and handjobs) is extremely unlikely to transmit HIV. For this to happen, vaginal fluids or semen from one partner would need to be in contact with open sores or cuts on the other partner (and of course, one of these partners would need to be HIV positive).

Oral sex is a little trickier. Receiving oral sex from someone with HIV (that is, having someone with HIV put their mouth on your genitals) has virtually no risk of transmission. Giving oral sex to someone with HIV (putting your mouth on their genitals) has a low risk of transmission. This risk is higher if you have bleeding gums or open sores in your mouth like herpes. If you are not using condoms for oral sex, you are much more likely to transmit STIs like gonorrhea, chlamydia, syphilis, or herpes than you are HIV.

Finally, oral-anal sex like rim jobs (putting your mouth and tongue on someone’s anus or having someone’s mouth and tongue on your anus) has virtually no risk of HIV transmission. You are much more likely to get Hepatitis A or a stomach bug from rimming.

Drug Use:

Although most people with HIV got HIV through sexual contact, this is mostly because there are way more people who have sex than there are people who use injection drugs. Because sharing injection drug supplies – like cookers, syringes, and needles – puts your blood in direct contact with another person’s blood, injection drug use is a very efficient way to spread HIV (and an even more efficient way to spread Hepatitis B and C – read more about them here).

Think no one you know shoots up? Maybe. But maybe they do or have and you just don't know about it. Some studies are showing an increase in heroin use among teens, even though for many using, it's more often snorted or smoked than injected: however, it's typical for users who don't inject at first to inject at some point. And it's pretty normal for teens and young adults to stay quiet about doing drugs that aren't considered socially acceptable by their peer group: in most groups right now, while drinking is often considered acceptable, or use of prescription drugs or weed might be, it's not that common for young adults to be forthcoming about harder drug use. Because attitudes about recreational drugs have been changing, it's pretty normal for people who used to use them a lot in the past to say little to nothing about their past drug history to friends or partners now. Lastly, steroid abuse is also sometimes done intravenously, and needles are sometimes shared when "regular" guys abuse steroids. As is the case with anything else, it's smart not to be too quick to deny or diminish the possibilities.

Ways You Can’t Get HIV:

HIV is not transmitted by casual contact, like shaking hands, hugging, or sharing a water fountain or toilet seat. You can’t get HIV simply by living in the same house, going to the same school, or working in the same place as an HIV-positive person. You cannot get HIV from eating food prepared by an HIV-positive person, or from your doctor’s office or dentist. Although you might spread other germs this way, you cannot get HIV by coughing and sneezing or by sharing things like towels, food, or eating and drinking utensils.

You also cannot get HIV from things like mosquito bites, touching dried blood or semen, spitting, or biting (unless you bit through someone’s skin and your own mouth was full of sores or bleeding gums, which is not a realistic scenario for most people).

Finally, it is important to know that HIV is a fragile virus that dies quickly outside of the human body. Sharing razors or toothbrushes or even getting stuck with an old, dirty needle are not serious HIV risks – these are risks for Hepatitis C, not for HIV.

If you want to learn more about impossible or unlikely ways of transmitting HIV, you can do so here.

You'd have to have sex with a lot of people to get HIV, right?

Nope: all you'd have to do is have unprotected sex with one person who has HIV and who isn't getting effective treatment for their infection. By all means, the greater number of sexual partners you have, the greater chance you've got of winding up with a partner with HIV, so limiting partners is a big help is reducing the risk of HIV. But if you're having unsafe sex with even one partner, you're at risk, so it's a very big deal to never make exceptions when it comes to safe sex, not even just "that once."

Still think mostly gay men get HIV/AIDS? In the early 80's, when HIV/AIDS were first discovered, a majority of those diagnosed with AIDS were gay men. Diagnosed-- that means who were found to have it, that doesn't count all the folks who had it without being diagnosed. But at this point, we know EVERYONE can get HIV and AIDS: in 2014, AIDS was a leading cause of death for black women between the ages of 25 and 34, for instance. Worldwide, more than 90% of HIV infections are due to unprotected heterosexual intercourse (consensual and through rapes), and around half of those living with HIV today worldwide are women. In the United States in 2016, almost a quarter of new HIV diagnoses were in heterosexual people.

Additional things that can put you at a higher risk for acquiring HIV are having another existing sexually transmitted infection (such as one of the more common ones: one reason teen girls are at an increased risk of HIV is because so many have Chlamydia without knowing it or treating it), getting wasted and having sex (primarily since that increases the risk of having unsafe sex), and much more rarely now, blood transfusions and having had a mother who was HIV-positive at the time of your birth. We can also safely say that homophobia increases the risk of HIV and AIDS, because in cultures and communities where men who sleep with men -- exclusively, or as well as with women -- have to be (or feel they have to be) on the down low, HIV rates are higher. Likewise, we can say that racism and xenophobia have increased the risk of HIV and AIDS given how much harder hit people and communities of color have been by HIV and AIDS. And by all means, ignorance, denial and silence increases all of our risks.

Just to give you an idea, here are some scenarios by which you and your friends could wind up transmitting or contracting HIV:

• Your current boyfriend had sex with an ex-girlfriend who was raped by someone HIV-positive, and who was too scared to tell anyone - including her doctor -- she was assaulted. Until she had sex with your now-boyfriend, she didn't choose to be sexually active, so she never got tested. She didn't tell your boyfriend about her assault, so since he thought she didn't have a partner before him, he never got tested either and told you it's okay because his previous partner was a virgin. That's the same reason you thought it was okay to go without condoms, because you're on the pill so figured your biggest risk was covered, but as it turned out, that ex was HIV-positive.

• Your ex-boyfriend was an older guy. His partners before you were also younger women, and he doesn't consider them as STI-risks (or care about putting them at risk), so he's never been tested, and also took advantage of you and them in terms of persuading you to have anal sex without a condom, because he said you couldn't get pregnant that way, so there was nothing to worry about. You didn't insist on condom use because you felt like he'd think you were being a baby. But he'd contracted HIV a few partners before you from another young woman who got it from another equally careless guy.

• You started seeing someone a few months back, and things were great at first, but after a couple months -- before you had time to really get to know their whole history -- and after once or twice with unprotected sex, you found out that they had some serious drug problems. They told you it was mostly just weed and beer, but didn't mention that they'd also shot heroin a couple times. Because they thought of themselves as safe since they weren't a regular user, they'd never even been tested to know they had HIV, which they exposed you to.

• You were at a party once and hooked up with a friend of a friend. You were wasted, and just didn't have it together enough to ask about condoms: in fact, you couldn't even remember the next morning if one was used or not. But that person you slept with (unbenownst to you), contracted HIV from another person at a party last year. You just hooked up with someone at a party recently again, and transmitted HIV to them, too.

In any of those scenarios, you can see how easy it can be -- in certain conditions -- to acquire HIV. You can likely also see how easy it is for it to spread among many people: add just a partner or two to those situations, and you've possibly got one or two more people with HIV from the same person. Add a partner or two to those people, and then a partner or two to all of those people...well, you can see how much easier it can be for an awful lot of people to get sick from what originally might have seemed like a safe situation to any given person.

How do you know if you have HIV?

HIV is diagnosed with a blood test that involves either having a tube of blood taken from a vein or having a drop of blood taken from a fingerstick (a lot like when people with diabetes check their blood sugar). There are several different types of HIV tests and understanding the differences between them can be a bit confusing, but here’s a breakdown:

Rapid vs. Lab Tests: 

Rapid HIV tests produce a test result right away – usually in about 15 minutes. These tests usually require a single drop of blood and are often given in HIV test centers, outreach events, and mobile testing vans. Lab-based HIV tests involve having a tube of blood drawn and sent to a special lab where the test is run. Depending on the lab and the types of tests you get, you might get your results the next day or a week later.

To understand the advantages and disadvantages of rapid vs. lab-based tests, it’s important to understand a concept called the window period. The window period is the time from when someone is infected with HIV to when someone actually shows up positive on an HIV test. Most rapid HIV tests look for antibodies that your body makes in response to HIV infection. Around 97% of people with HIV will have these antibodies within 1 month of infection, but some folks take up to 3 months to make these antibodies. Making antibodies to HIV is known as seroconversion. A person who is infected with HIV but who has not yet seroconverted will test negative on an antibody test.

When you get a rapid antibody test for HIV, you might be told the test has a 3 month window period. The window period is the amount of time it takes from when you get infected with HIV to when you’d actually test positive on a test. Since most people with HIV take 1-3 months to seroconvert, antibody tests have a 3-month window period. If you get this type of test, you’ll be encouraged to test again when 3 months have passed to be sure of your HIV status.

Antigen and RNA Tests:

If you are feeling especially anxious about HIV, or if you think you’re at high risk and want to catch an infection early, 3 months can feel like too long to wait to get tested. Lab-based HIV testing has a much shorter window period and is a better choice for a person with recent HIV risk. Lab-based tests, including antigen and RNA tests, look for HIV itself rather than your body’s response to HIV infection.

There are also lab-based tests that look for the virus AND the antibody. These tests are called 4th generation tests or combination antibody/antigen tests. 4th generation tests have a window period of about 2 weeks and RNA tests have a window period of about 10 days. All of these tests are becoming more widely available because they help to catch HIV infection early. Because these tests require having your blood drawn, you usually need to go to a sexual health or general medical clinic to get them.

How do you know if someone else has HIV or AIDS?

The only way you can know if someone is HIV positive is if they tell you. A person with HIV/AIDS won’t necessarily have symptoms or any outward signs that you could see, and even people with AIDS don’t always look sick. This doesn’t mean that HIV/AIDS doesn’t cause any symptoms, however. HIV infection has 3 stages, and they look a bit different in terms of the symptoms someone may or may not have.

Stage 1 HIV, also called acute HIV, occurs about 2-4 weeks after a person is infected with HIV. A person with acute HIV might experience symptoms like a fever, swollen glands, body aches, fatigue, and other vague symptoms that are easily mistaken for the flu or another bug. Other people have no symptoms at all.

In the acute phase, HIV is rapidly making copies of itself and a person will have a very large amount of virus in their body. This is called having a high viral load. When someone’s viral load is high, it is very easy for them to give HIV to other people. A person in the acute phase of HIV infection will not test positive on HIV antibody tests and might not know that they are positive. HIV antigen and RNA tests can catch HIV infection in the acute phase, however.

Stage 2 HIV is also called the latent period. A person with latent HIV infection will not have any symptoms. At this point, the person has seroconverted (made antibodies to HIV) and will test positive on antibody tests. Their immune system is trying its best to fight off the HIV and their viral load will go down a little (but still be high enough to spread to other people). The latent period can last 10 years or more. If untreated, HIV will slowly damage the person’s immune system. Their CD4 cells (the cells HIV infects and kills) will drop and their viral load will get higher.

When a person with HIV has a CD4 count that’s too low, they have Stage 3 HIV infection, also known as AIDS or HIV disease. This is the point where people with HIV start to get sick and sometimes start to look sick. AIDS often causes symptoms that won’t go away like diarrhea, fevers, swollen glands, weight loss, yeast infections (especially in the mouth and throat), and frequent respiratory infections (like pneumonia). Without treatment, people with AIDS eventually develop opportunistic infections that can be fatal.

Although it might sound like all people with AIDS would look really sick, this isn’t true – even a person with an AIDS diagnosis can return to health with proper treatment. Many people who were near death in the early years of the AIDS epidemic became healthy again when better medications came out.

Speaking of which, you’ve probably heard the phrase “full-blown AIDS” before. This phrase is sometimes used to describe a person with AIDS who looks really sick, or to make AIDS sound extra scary. The reality is that a person with HIV might or might not have AIDS, but “full-blown AIDS” is not a real diagnosis.

HIV isn't as big of a deal as it used to be, because there are good drugs for it now. In fact, isn't there a cure for AIDS now?

There is currently still no cure for HIV. Once you have an HIV infection, you have it for life. Similarly, once you have an AIDS diagnosis, you have that diagnosis for life (even if you get healthy again). However, although HIV/AIDS is not curable, it is treatable.

Many people believe that HIV is a death sentence. From the first AIDS cases in 1981 up through the mid-1990s, this was basically true. Until the mid-1990s, the medications used to treat HIV (known as antiretroviral medications or ART for short) were not very effective or easy to take. Treatment involved taking many pills a day and the medications often took a serious toll on people’s bodies. Some people were unable to tolerate the side effects, and people who did stay on treatment often found that the drugs became less effective over time. Many HIV patients developed AIDS and died despite being on medication.

In the Western world, this changed drastically in 1996, when new medications called protease inhibitors were developed. Instead of taking only one or two drugs, people began taking drug regimens known as “triple therapy” or “drug cocktails” where they would take 3 or 4 drugs at the same time. These newer drug regimens prevented HIV from becoming resistant to the medications and made it possible for people with HIV to live long, healthy lives. Modern HIV treatment usually involves taking a once-daily pill that contains 3 or 4 medications. These modern regimens work better and have far fewer side effects than older medications.

However, managing HIV also relies on two very important factors: finding HIV early and being able to take HIV medications consistently and correctly.

In Western countries like the United States, Canada, and most countries in Europe, HIV medication is covered by health insurance and there are safety net programs to help people without coverage afford treatment. However, most people with HIV live in low-income countries and do not have access to medications. One big reason why people of color worldwide are harder hit by HIV and AIDS has to do with racism and class differences. Globally, the people with access to healthcare and the money to pay for it are mostly white people. People in regions like sub-Saharan Africa, Eastern Europe, and Southeast Asia have less access to HIV treatment and early HIV testing – and so people are still dying of AIDS at alarming rates in these parts of the world.

In Western countries, many people still lack access to treatment. Reasons for this include living in an area without quality medical care (especially sexual health care), not having access to resources to get care like money, health insurance, and transportation, and because social stigma and fear makes it hard to get good sexual healthcare. In the United States for example, the impact of HIV/AIDS is most seriously felt among marginalized groups of people. For example, Black people make up about 13% of the U.S. population but 44% of all new HIV diagnoses. In general, people of color, trans people of all genders, people in low-income areas, and youth are especially impacted by HIV/AIDS. For people who don’t have access to healthcare or regular STI/HIV testing, living in a country with modern HIV testing and treatment tools can be of limited use.

Even when good healthcare and treatment for HIV can be accessed, HIV is a chronic health condition and managing it is a major responsibility. Since there is no cure, HIV is something you must manage for the rest of your life. Living with HIV means making a lifelong commitment to regular medical visits and daily medication. For many young people, living with HIV is the first time they’ve ever had to make regular healthcare appointments or take a pill every day. For youth who are struggling with other problems in their life – like homelessness, abusive relationships, mental illness, or substance use – keeping on top of their HIV care can be a real challenge that requires extra support.

Managing HIV doesn’t just mean taking responsibility for your own health – it means taking responsibility for the health of your partners. When a person with HIV takes their medication consistently and correctly, the amount of virus in their body is reduced to the point where it cannot be measured in blood tests. This is called being undetectable. A person who is undetectable has not been cured of their HIV, but the amount of virus in their body is low enough that they cannot transmit HIV to their sex partners. HIV treatment makes it possible to stay healthy while having a safe and fulfilling sex life.

Because of earlier detection and advances in medicines, fewer young people with HIV will develop AIDS. Even people who do have AIDS are living longer than ever before. But it's important to remember that diagnosing HIV before it progresses to AIDS drastically improves your chance of living a long, healthy life and preventing HIV altogether is still better than living with a chronic medical condition.

So, since we have modern treatment, HIV/AIDS is only a real problem in Africa.

HIV and AIDS are a real problem all over the map. Certainly, Africa has been hit very hard by HIV and AIDS, largely because of a lack of education about them both (which is also a problem in other continents, including this one), as well as because of cultural issues and lack of good healthcare and treatment. But the World Health Organization has made clear that rates are also strongly rising in China, India, Indonesia and Russia, and rates of HIV have not been decreasing here in the western world. Some of why is because HIV information and treatment is not reaching critical populations at risk, and teens and young adults worldwide are one of those critical populations.

But you don't even have to ask for HIV tests anymore: your doctor usually does them at regular checkups.

While many general practitioners and clinics have upped their efforts to make HIV screenings more routine, it's never smart to assume you've been tested without finding out for sure. Too, a lot of doctors report that because of the cultural climate in terms of teens and sex, they are nervous to ask teens about their sexual activity and STI testing. It's often estimated that less than 20% of of teens and young adults in the U.S. with HIV have been tested and are aware that they have it.

Be proactive and double check with your healthcare provider that you have been tested for HIV. If you have been sexually active and don't want to tell your doctor (something we wouldn't advise keeping to yourself from healthcare pros, but still), you don't have to disclose that: you can ask for a test without discussing your sexual history at all. If your doctor asks why you're asking for testing, all you need to say is because you want to be sure you don't have HIV.

I can't get tested, because when you do, the doctor or clinic has to notify everyone you know.

That's a reasonable fear -- there's so much stigma around HIV, and with young people who usually acquire HIV through drug use or sex, people knowing you've got HIV often also means people knowing (or guessing about) what you did to wind up with HIV. But that's a fear which isn't grounded in the reality of HIV testing right now.

You can get a test for HIV -- an oral swab and/or a blood test -- at your regular, general doctor's office or general health clinic, at a hospital, via student health services or through your gynecologist, urologist or sexual health/family planning clinic. There are also clinics which specifically deal with HIV testing and treatment, too. But ALL of those places are legally obligated to protect your privacy. Your HIV status is not given to your partners, your parents, your landlord, your employer, your school, or anyone but YOU. Test counselors can’t even tell your doctor without your permission.

If you're a minor, you can get HIV testing in most locations worldwide without parental permission or notification. If you choose to use a doctor where your family insurance will cover your visit, then your test may show up on the statement sent to your family, but with so many options for HIV testing in most places -- many of which are low-cost or even free -- there's no need to go through that channel unless you want to. Most HIV results are not sent in the mail, or given to someone else, but given to you, one-on-one, by the person who tested you. If you have any concerns about this when you get tested – just ask! HIV test counselors are happy to talk to you about what would happen if your result came back positive. It is completely reasonable to want to make sure that your information will be kept private and only given to you.

If a person is positive, then that new case will be reported to public health agencies (that's really important to help with prevention efforts as well as with developing treatments), but not with a name made public: a code is used instead. If you test positive, you might be offered something called “partner services”. This is when a health worker talks to you about your current and previous partners and offers to help you disclose your HIV status. No one will ever notify your partners of your HIV status without your consent – they’ll either help you make a plan to disclose on your own, or offer to disclose for you (without using your name or telling your partners how they might have been exposed). Partner services are voluntary, so while we definitely urge you to talk to your partners about your status, no one will ever force you to. .

We all get that testing can be really scary. (Not to sound like your granny, but back in the day when I first got screenings for HIV, we had to wait weeks and weeks for results, and this is before we had antiretrovirals, when being HIV-positive really was a real death sentence, and we still weren't sure, as we are now, about how it was even transmitted. That wait was absolute torture.) But in so many ways, putting off testing is like letting a pile of unopened bills sit on your desk: the bills aren't going to go away, and the longer you wait to deal with them, the worse things are going to get if you owe. Believe it or not, finally going and getting tested -- and getting in the habit of doing it -- is much more of a relief than it is a burden. If you're feeling really messed up about getting tested, ask your clinic for some extra emotional support before, during and after your tests: they can help and they want to help.

For more on current HIV testing, click here.

I don't want to even go INTO an HIV or AIDS clinic to get tested, because if I don't have it already, I might get it there.

Not anything close to likely. Again, HIV is spread through blood contact, sex, childbirth, and breastfeeding, and if you're not having unprotected sex with anyone in the clinic, sharing needles with anyone in the clinic (and clinicians are beyond impeccable about using clean needles for testing), or breastfeeding from someone in the clinic, you're not going to wind up with HIV. You can't get HIV through casual contact -- like sitting on the same chair or sharing a toilet -- and you also can't get it from even pretty close contact with someone who is HIV positive: close contact like closed-mouth kissing, hugging, handshaking, even sharing glasses or cups don't present HIV risks.

How can you protect yourself?

If you are not having vaginal sex, anal sex, or using injection drug equipment, your risk of getting HIV is essentially zero. 

If you are having intrcourse, latex condoms have been shown, time and time again, over a considerable amount of time, to reduce the risk of HIV transmission by as much as 99%, and by 80% on average, with typical (rather than perfect) condom use. To give you an idea of what sort of risk protection 80 - 99% is, anyone with ears has heard again and again how much seatbelts help save lives. Seatbelts prevent death in car accidents by around 40% according to most sources. In other words, using latex condoms for ALL the genital sex you have, always, provides more than twice as much protection for you against HIV than seatbelts provide protection against death in a car. That's a whole lot of protection for something so easy to afford, obtain and use.

If you're going to be sexually active, it's essential to use latex barriers -- outside or inside condoms -- during sex, to prevent the spread of HIV, as well as other infections and diseases, and it's crucially important that condoms are ALWAYS used, not just sometimes, not most of the time, but every single time.

It's also really important to use condoms correctly: if you or your friends are having condoms break often, you can be sure you're not using them correctly, since rates of breakage shown with correct use are usually less than 2%.

Correct condom use means:

  • Having a condom on for ALL direct genital contact,
  • Opening the package carefully to avoid tearing or puncturing the condom,
  • Always leaving room in the tip of the condom for ejaculate,
  • Using EXTRA latex-safe lubricant with your condoms, every time, and adding more as needed,
  • Being sure to hold the base before withdrawing after sex,
  • and using condoms which are of good quality and have been stored properly before use.

For more detailed instructions on proper condom use, click here.

While latex barrier use all by itself is really critical, getting regularly tested isn't a footnote, either. Regular HIV and STI screenings for EVERYONE who is or has been sexually active (has had any sort of oral or genital sex with another person) are hugely important. Getting tests for ALL STIs, at least once every year, is critical to protect yourself and others.

As you know by now, having other, more commonly transmitted STIs left undiagnosed and untreated not only puts your general and reproductive health in danger -- and that of any sexual partners -- it also puts you at a higher risk of contracting more infections, including HIV. And with HIV in particular, the earlier it is diagnosed, the earlier you can take measures -- such as lifestyle changes and medications -- to start taking care of yourself and to avoid developing AIDS.

One other important way to protect yourself, while ALSO using latex barriers for any partnered sex AND getting regular testing, is just to alter some of your behavior, or live in a way that helps protect you from the start. There's a whole lot of reasons to avoid injection drug use, obviously, but HIV prevention is one of those reasons. Too, avoiding or seriously limiting drug and alcohol use is another big help: it's been shown time and time again that drugs and alcohol influence people's sexual behavior, and usually in ways that create extra physical and emotional health risks, including STI risks.

If you already use injection drugs, telling you to cut back or stop is probably not helpful. However, there are still some very real ways you can protect yourself from HIV even if you continue to shoot up. Many cities have syringe exchange programs that distribute sterile injection drug use equipment – like needles, syringes, cookers, and cotton filters – for free. These programs also give you a safe, anonymous, and free way to dispose of dirty needles and can often get you access to other services, like HIV testing, wound care, and rehab (if you want it). If you don’t live in an area with a syringe exchange program, you can reduce your risk of contracting HIV (and other infections like Hepatitis B and C, cotton fever, and wound abscesses) by never sharing your own equipment (even if you reuse it). You can learn more about safer injection drug use from the Harm Reduction Coalition here.

Limiting sexual partners, particularly those for any kind of unprotected sex, can also help reduce your risk for HIV. Sometimes, it can be hard to imagine you even have to when you're younger, because every relationship feels like it's going to last forever. But the reality is that very few do, and for teens and young adults, most relationships are really pretty short-lived. That doesn't mean you have to pick one person to date for all of high school and college if that doesn't feel right to you, nor does it mean you have to be celibate if you don't want to. What it does mean is that it's smart and safer to give extra thought to who you'll take as a sexual partner, and to go slow with sexual partnership. There are plenty of ways to test the waters that don't put you at big risks at all, even without use of latex barriers -- things like kissing, petting, frottage, manual sex (handjobs and fingering, so long as hands are clean) and mutual masturbation are all very safe sexual activities when it comes to HIV and other STI risks. One other good rule of thumb is to hold off on any sexual activity until you've known someone long enough to feel comfortable talking very openly about the parts of sex that are a drag, like how to have sex safely and responsibly, like sexual history and STI testing history. If you don't feel okay asking for the last dates someone got screened and their results, it's a smart move to wait for any genital sex at all until you do.

Remember, too: it can be easy to feel like we trust someone when they're new to us and we've got no sound reason not to. But not knowing them well IS sound reason not to. To boot, trust doesn't make anything safer when it comes to STIs like HIV. Someone being trustworthy doesn't mean they haven't been at risk, nor does it negate the need for safer sex like latex barriers and STI testing. Want an example of very real trust? Going to the clinic to get tested together and trusting that no matter each of your results, the other person will be kind, understanding and willing to work anything through that needs working through.

Managing barriers, testing and lifestyle issues can seem daunting if you're not in the habit of doing it, but just like getting into any other habit is -- such as exercising daily, getting to work on time or creating a study routine in college -- once you get used to doing all of these things, they really are a breeze.

Much like the morning-after pill to help prevent pregnancy once we've already had a risk, there is also similar "morning-after" treatment for those who have been exposed to HIV, called Post-Exposure Prophylaxis (PEP for short). PEP consists of a 28-day course of HIV medication (similar to the medications used to treat HIV infection). Studies show PEP has reduced the risk of HIV infection by 99% in individuals with high-risk sexual exposures. PEP must be started within 72 hours of exposure – but the sooner, the better. PEP can be accessed at most emergency rooms, although some sexual health clinics provide PEP as well.

Similarly, people at higher risk of HIV infection can take a once-daily medication called PrEP (pre-exposure prophylaxis) to prevent HIV infection. When taken daily (and this is key – PrEP only works well if you take it correctly, which means every single day), PrEP reduces the risk of HIV infection by up to 99%. If you are at greater risk for HIV: if, for example, you have sex with multiple partners, don’t always use condoms, have an HIV-positive partner, or use injection drugs, PrEP is a great way to protect yourself against HIV. PrEP does not prevent other STIs, so ideally PrEP is something you use to backup your protection from condoms, rather than as a replacement for condoms. Learn more about PEP and PrEP here.

What if I get a test and find out I'm positive? No one is going to play Pollyanna and say that getting a positive result is going to be your best day ever. That's tremendously tough news for anyone, and there's little to soften that blow.

But the sooner you find out, the better off you are, and the sooner you can get started on taking care of yourself as best you can. Again, being positive really, truly, is not a death sentence anymore, nor does it mean your whole life is over. People who are HIV-positive now and who get good treatment and take good care of themselves and those around them can have excellent relationships -- including sexual relationships -- get pregnant and have kids, keep their jobs, and achieve the goals they aspire to. That's not to say all of that is always easy as pie -- it's often not -- but it is doable, and all the more so when you face things head-on, and don't delay in getting diagnosed and treated.

There is also more and more support out there for HIV-positive folks, so it's not something most people will have to go alone. Having HIV is in many ways no different than having any other sort of serious disease: people with diabetes or cancers can find ways to survive and manage their diseases, and the same is true for those who have HIV.

There's just no good reason to avoid getting tested regularly. If you find out you don't have HIV, that's one less thing for you to have to worry about. If you find out you do, the sooner you know, the better off you and everyone around you will be, and the better your chances for getting through it and being able to continue the life you're just starting in the healthiest way possible.

Sources & Resources

Want to find out about other STIs?

Substantial edits, additions and updates have been made to this piece in 2018 with the help of Finn Black. 

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