What Do I Do? A Handbook to Understanding Health & HIV is an online and print resource by the Human Rights Campaign, in collaboration with AIDS United, designed to provide easy-to-read, up-to-date and actionable information about the current realities of HIV. Help us end the epidemic by reading this handbook and sharing what you learn with your friends, partners, family members, and loved ones.[1]

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What do I do if I don't know anything about HIV?

Here are some things you should know…

Let's start with the basics. HIV is a virus. HIV works by attacking your body's immune system, which is crucial to fighting off infections and diseases. If ignored, HIV can lead to an AIDS diagnosis.

HIV can hide in your body without producing recognizable symptoms. However, that doesn't mean the virus isn't damaging your health. The only way to know if you have HIV is to get tested.

Your body cannot get rid of HIV by itself. Fortunately, there are now several ways to prevent and treat HIV. And with the help of a knowledgeable healthcare provider, you can lead a long, healthy life regardless of your HIV status.

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Here are some things you can do…

Get educated.

There are many resources available online to help you become better informed about HIV prevention, treatment and care.

Get tested.

There are many free and low cost HIV testing sites around the country where you or your partner(s) can get tested and/or treated for HIV and other STIs. Consider getting tested early and often!

Find a knowledgeable healthcare provider.

Your provider will be able to answer your questions and address any concerns you may have.

Consider prevention strategies.

Consider one or more prevention strategies – including PrEP – that will enable you to have a long and healthy life while minimizing the spread of HIV and other STIs.

Get involved.

There are many great organizations that you can follow online to keep up with the current realities of HIV, including the Centers for Disease Control and Prevention, AIDS.gov.

What do I do if I don't know whether I'm likely to contract HIV?

Here are some things you should know…

The majority of adults in the United States who never get tested for HIV say it is because they do not think they are likely to contract it. However, consider the following scenarios.

Have you ever…

  • Had condomless vaginal, anal or oral sex?
  • Had condomless vaginal, anal or oral sex with someone you just met - for example, in a bar, on the Internet or through a mobile-based app such as Grindr?
  • Had condomless vaginal, anal or oral sex with someone whose HIV status you didn't know?
  • Exchanged sex for food, drugs, money or housing?
  • Tested positive for an STI, hepatitis or tuberculosis?
  • Shared needles or injection equipment with other people?
  • Had condomless vaginal, anal or oral sex with people who may have engaged in any of the behaviors listed above?

If you answered yes to any of those questions, then you may be at an increased risk for contracting HIV.

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Here are some things you can do…

Get educated.

There are many resources available online to help you become better informed about HIV prevention, treatment and care.

Get tested.

There are many free and low cost HIV testing sites around the country where you or your partner(s) can get tested and/or treated for HIV and other STIs. Consider getting tested early and often!

Find a knowledgeable healthcare provider.

Your provider will be able to answer your questions and address any concerns you may have.

Consider prevention strategies.

Consider one or more prevention strategies – including PrEP – that will help you lead a long and healthy life while minimizing the spread of HIV and other STIs.

Get involved.

There are many great organizations that you can follow online to keep up with the current realities of HIV, including the Centers for Disease Control and Prevention, AIDS.gov.

What do I do if I think I've recently been exposed to HIV?

Here are some things to know…

HIV is transmitted through the following bodily fluids:

  • Blood
  • Semen (i.e., cum)
  • Pre-seminal fluid (i.e., pre-cum)
  • Vaginal fluid
  • Rectal fluid
  • Breast milk

It's important to know that you cannot get HIV from kissing, hugging, or other types of non-sexual physical contact.

Most commonly, HIV is transmitted through condomless [2] anal or vaginal sex.

In general:

  • Condomless anal sex (e.g., barebacking) is considered the highest-risk sexual activity followed closely by condomless vaginal sex.
  • Receptive partners (e.g., bottoms) are more susceptible to contracting HIV than insertive partners (e.g., tops).
  • While condomless oral sex is considered a low-risk sexual activity, transmission can occur. Also, keep in mind that oral sex includes any activity that involves using the mouth on the penis, vagina or anus (i.e., rimming). And the risks increase after flossing, brushing or anything that could irritate the gums.

You can also get HIV from sharing needles and syringes for drug use, hormone injections or steroid injections. Non-injection drug users are also particularly susceptible to contracting HIV.

Less commonly, HIV may be transmitted by:

  • Being born to a mother with HIV. HIV can be passed from mother to child during pregnancy, birth or breastfeeding.
  • Being pricked by a needle or other sharp object that has been used on or by someone living with HIV.

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Here are some things you can do…

If you think you’ve been exposed to HIV within the last 72 hours, go to the nearest medical facility or emergency room and ask about Post-Exposure Prophylaxis (PEP).

  • PEP is an HIV prevention strategy that involves taking HIV medications immediately after a single high-risk event, such as condomless sex without the use of PrEP.
  • PEP must be started as soon as possible to be effective, but no more than 72 hours after you may have been exposed to HIV.

Get educated.

There are many resources available online to help you become better informed about HIV prevention, treatment and care.

Get tested.

There are many free and low cost HIV testing sites around the country where you or your partner(s) can get tested and/or treated for HIV and other STIs. Consider getting tested early and often!

Find a knowledgeable healthcare provider.

Your provider will be able to answer your questions and address any concerns you may have.

Consider prevention strategies.

Consider one or more prevention strategies – including PrEP – that will help you lead a long and healthy life while minimizing the spread of HIV and other STIs.

Get involved.

There are many great organizations that you can follow online to keep up with the current realities of HIV, including the Centers for Disease Control and Prevention, AIDS.gov.

What do I do if I think I've been discriminated against because I have HIV?

Here are some things you should know…

Americans living with HIV or AIDS may face discrimination because of their HIV status in many areas of life, including employment. Federal and state laws protect against this type of discrimination. Under the Americans with Disabilities Act (ADA), HIV and AIDS qualify as "disabilities" even if asymptomatic.

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Here are some things you can do…

What do I do if I think I have HIV?

Here are some things you should know…

HIV is a virus. HIV works by attacking your body's immune system, which is crucial to fighting off infections and diseases. If ignored, HIV can lead to an AIDS diagnosis, which is the most serious stage of HIV. Here are the four stages of HIV:

Stage One: Exposure

  • HIV enters the body.

Stage Two: Primary/Acute

  • Some people, but not all people, experience flu-like symptoms.
  • If symptoms do occur, they usually start within 2-4 weeks of HIV entering the body.
  • These flu-like symptoms are the body's natural response to HIV. However, it's important to keep in mind that many illnesses can cause flu-like symptoms.
  • The only way to know if you've been exposed to HIV is to get tested.

Stage Three: Latent

  • People in this stage may not have any noticeable symptoms even though the virus is slowly making copies of itself.
  • People in this stage who know their HIV status and consistently take their medication can live symptom-free for a long time. It is also virtually impossible for them to transmit the virus to someone else once they've maintained an undetectable viral loads for at least six months.
  • People in this stage who don't know their HIV status, or who don't take their medication consistently, will likely stay in this stage for a period of time before moving onto the most serious stage of HIV.

Stage Four: AIDS

  • People living with HIV who don't consistently take their medication will likely advance to this stage. At this stage, the body isn't as able to fight off diseases.
  • Because HIV severely weakens the body's immune system, other illnesses may soon appear. Even something like a common cold can cause serious problems in this stage. These types of illnesses are called "opportunistic infections," which affect individuals with weakened immune systems more seriously and frequently than others.
  • Fortunately, people living with HIV can avoid getting to this stage if they know their status, see a knowledgeable healthcare provider and consistently take their medication.

Click Here to Learn More

Here are some things you can do…

Get tested.

There are many free and low cost HIV testing sites around the country where you or your partner(s) can get tested and/or treated for HIV and other STIs. Consider getting tested early and often!

Find a knowledgeable healthcare provider.

Your provider will be able to answer your questions and address any concerns you may have.

Get educated.

There are many resources available online to help you become better informed about HIV prevention, treatment and care.

Get involved.

There are many great organizations that you can follow online to keep up with the current realities of HIV, including the Centers for Disease Control and Prevention, AIDS.gov.

Consider prevention strategies.

Consider one or more prevention strategies – including PrEP – that will enable you to have a long and healthy life while minimizing the spread of HIV and other STIs.

What do I do if I've recently tested positive for HIV?

Here are some things you should know…

A positive test result should always be followed by a confirmatory test. If this second test is also positive, it means HIV is in your body.

Many people don't get tested for HIV just to avoid the possibility of receiving this news. But you took the first step, which is hugely important and gives you the opportunity to get connected to care sooner rather than later so you can benefit from early treatment.

Even though HIV is now a treatable, long-term medical condition, many people who receive an HIV-positive diagnosis report feeling confused, isolated and scared. These are natural responses and can be difficult to manage. But remember, HIV is not a death sentence. Nor is it something to be ashamed of! Many people with HIV are able to lead long, healthy lives with proper medical care and the support of loved ones. In fact, there are more than 1 million people in the United states living with HIV.

By consistently taking their medication, people living with HIV can lower the amount of HIV in their bodies to undetectable levels. While undetectable, a person living with HIV remains in good health and cannot transmit the virus to someone else. Prevention options (e.g., condoms, Pre-Exposure Prophylaxis) exist for those in relationships where one partner may not yet be undetectable.

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Here are some things to keep in mind…

Time.

It's OK to take some time to deal with the diagnosis and to sift through your emotions. An HIV-positive test result is not always an easy thing to accept. You should feel free to take a few days for yourself if it will help you respond more effectively.

Doctor.

Find a doctor or licensed healthcare provider in your area who has experience treating people living with HIV. You should schedule a medical visit with that person within two weeks of your HIV-positive test result. The person who tested you should be able to provide you with a list of referrals. You can also use the Internet. If you don't like the provider referred to you, that’s OK—you may be able to switch in the future. However, you should take any opportunity to see someone right away.

Insurance.

If you are uninsured, underinsured or undocumented, tell that to the person who tested you. There are programs that will provide free or subsidized health insurance for people living with HIV, regardless of their immigration status.

Information.

The more you know about HIV, the easier it will be to manage your diagnosis. Read books and brochures, talk to HIV counselors and health educators, follow treatment news and updates and connect to organizations promoting HIV awareness on social media such as Greater Than AIDS or AIDSMap.

Check-ups.

Monitor your body. Your doctor will order periodic lab work to check how your immune system is doing and to see if it’s keeping the virus in check. Get familiar with the meaning of your lab results and do not miss regular check-ups.

Support.

Find support from trustworthy friends, family members and loved ones. Ask the person who tested you to provide you with referrals to therapists, social workers, case managers and support groups for people living with HIV. There are plenty of resources out there. Again, consider using the Internet to help you make these important connections.

Drugs.

If you believe drugs were a factor that may have led to your HIV diagnosis, tell that to the person who tested you or your case manager. That person can likely connect you to social support services that will help you address the issue if you’re ready. Keep in mind that addressing substance abuse issues will only lead to better health outcomes in the long run.

What do I do if I recently tested negative for HIV?

Here's what you should know…

A negative test result means that the test did not find signs of HIV in your body. If it has been at least three to six months since you last engaged in high-risk behaviors, then you probably do not have HIV. Now that you know your status, it's important to remain HIV-negative and consider additional prevention strategies.

Click Here to Learn More

Here are some things you can do…

Get educated.

There are many resources available online to help you become better informed about HIV prevention, treatment and care.

Get tested.

There are many free and low cost HIV testing sites around the country where you or your partner(s) can get tested and/or treated for HIV and other STIs. Consider getting tested early and often!

Find a knowledgeable healthcare provider.

Your provider will be able to answer your questions and address any concerns you may have.

Consider prevention strategies.

Consider one or more prevention strategies – including PrEP – that will help you lead a long and healthy life while minimizing the spread of HIV and other STIs.

Get involved.

There are many great organizations that you can follow online to keep up with the current realities of HIV, including the Centers for Disease Control and Prevention, AIDS.gov.

What do I do if I want to reduce my chances of contracting HIV?

Here are some things you should know…

There are many steps you can take to reduce your chances of contracting HIV. For example, you can…

  • Use Condoms. Find the right size and choose a type of condom you like.
  • Use Lube. Use water-based or silicone-based lubricant – particularly for anal or vaginal sex – to prevent tears in the skin and to keep condoms from breaking.
  • Get Tested. It’s the only way to know if you or a partner has HIV.
  • Test and Treat STIs. Having an active STI, or even a history of certain STIs, can make it easier to acquire or transmit HIV.
  • Talk to Your Partners. Ask sexual partners about the last time they got tested for HIV and other STIs. Consider getting tested together.
  • Date Undetectable. By consistently taking their medication, people living with HIV can lower the amount of HIV in their bodies to undetectable levels. While undetectable, a person living with HIV remains in good health and cannot transmit the virus to someone else. Prevention options (e.g., condoms, Pre-Exposure Prophylaxis) exist for those in relationships where one partner may not yet be undetectable.
  • Be mindful of drug and alcohol use. Substance use can increase your chances of acquiring HIV directly and indirectly, depending on the circumstances.
  • Change Syringes. If you inject hormones, drugs or steroids, use a new, clean syringe and other injection equipment every time.
  • Consider PEP. PEP is an HIV prevention strategy that can be used in emergency situations, such as condomless sex with someone whose HIV status you do not know.
  • Consider PrEP. PrEP is an HIV prevention strategy that can be taken every day to significantly reduce the likelihood of acquiring HIV.

Click Here to Learn More

Here are some things you can do…

Get educated.

There are many resources available online to help you become better informed about HIV prevention, treatment and care.

Get tested.

There are many free and low cost HIV testing sites around the country where you or your partner(s) can get tested and/or treated for HIV and other STIs. Consider getting tested early and often!

Find a knowledgeable healthcare provider.

Your provider will be able to answer your questions and address any concerns you may have.

Consider prevention strategies.

Consider one or more prevention strategies – including PrEP – that will help you lead a long and healthy life while minimizing the spread of HIV and other STIs.

Get involved.

There are many great organizations that you can follow online to keep up with the current realities of HIV, including the Centers for Disease Control and Prevention, AIDS.gov.

What do I do if the person I want to have sex with has HIV?

Here are some things you should know…

First, don’t freak out! There are two kinds of safer sex strategies that can minimize or virtually eliminate the spread of HIV and other sexually transmitted infections.

Behavior-based prevention strategies.

These safer sex strategies are meant to lower the risk of getting or transmitting HIV by equipping people with the motivation and skills they need to modify their behaviors. They include:

  • Sexual health education
  • Condom negotiation
  • Risk-reduction counseling
  • Disclosure of one's HIV/STI status

Medication-based prevention strategies.

These safer sex strategies involve taking HIV medications before or after exposure to reduce the risk of getting or transmitting HIV. They include:

  • Post-exposure prophylaxis (i.e., PEP)
  • Pre-exposure prophylaxis (i.e., PrEP)
  • Treatment as prevention (i.e., "dating undetectable")

Click Here to Learn More

Here are some things you can do…

Get educated.

There are many resources available online to help you become better informed about HIV prevention, treatment and care.

Get tested.

There are many free and low cost HIV testing sites around the country where you or your partner(s) can get tested and/or treated for HIV and other STIs. Consider getting tested early and often!

Find a knowledgeable healthcare provider.

Your provider will be able to answer your questions and address any concerns you may have.

Consider prevention strategies.

Consider one or more prevention strategies – including PrEP – that will help you lead a long and healthy life while minimizing the spread of HIV and other STIs.

Get involved.

There are many great organizations that you can follow online to keep up with the current realities of HIV, including the Centers for Disease Control and Prevention, AIDS.gov.

What do I do if I want to get on PrEP?

Here are some things you should know…

PrEP stands for pre-exposure prophylaxis. It is a once-daily pill regimen that can help you stay HIV-negative. As of publication, the only pill that is FDA-approved for PrEP is a prescription medication sold under the brand name Truvada®. People who use PrEP must commit to taking the drug every day and seeing their healthcare provider for follow-up and additional testing every three months.

PrEP is intended for HIV-negative individuals who are more likely to encounter HIV, including anyone who is in an ongoing relationship with a partner living with HIV, does not consistently use a condom when having sex or shares injection drug or hormone equipment.

When taken as prescribed by a knowledgeable healthcare provider, PrEP is highly effective at preventing transmission of HIV (i.e. upwards of 90 percent). While PrEP does not protect against other sexually transmitted infections or unwanted pregnancy, it can be paired with condoms and other STI prevention strategies for additional protection. It's also important to remember that STIs remain relatively easy to treat or cure in the United States.

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Here are some things you can do…

Learn more about PrEP.

There are several resources available online to help you develop a better understanding of PrEP and its role in HIV prevention.

Get educated.

There are many resources available online to help you become better informed about HIV prevention, treatment and care.

Get tested.

There are many free and low cost HIV testing sites around the country where you or your partner(s) can get tested and/or treated for HIV and other STIs. Consider getting tested early and often!

Find a knowledgeable healthcare provider.

Your provider will be able to answer your questions and address any concerns you may have.

Consider prevention strategies.

Consider one or more prevention strategies – including PrEP – that will help you lead a long and healthy life while minimizing the spread of HIV and other STIs.

Get involved.

There are many great organizations that you can follow online to keep up with the current realities of HIV, including the Centers for Disease Control and Prevention, AIDS.gov.

What do I do if I can't afford Truvada® for PrEP?

Here are some things you should know…

Truvada® for PrEP is covered by many private health insurance plans and state Medicaid programs. In some areas, there are programs that can help you access Truvada for PrEP even if you are uninsured or are undocumented. That said, Truvada for PrEP can be very expensive depending on the type of insurance coverage you have.

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Here are some to things you can do…

What do I do if I need help disclosing my HIV status?

Here are some things to know…

Open, safe and honest communication about your HIV status, whether positive, negative or unknown, is crucial to maintaining personal and community health. Disclosure-the act of telling someone about your HIV status-often promotes intimacy as well as safety.

While a lot of great things can happen by disclosing your HIV status, the lingering stigma that surrounds HIV can lead to problematic situations, especially if you live in a state where HIV disclosure is mandated by law. [3][4] Deciding whom to disclose your HIV status to (and when) is a very personal decision and part of an ongoing process that develops over time.

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Here are some things to consider…

Who.

Think about the different kinds of relationships you have with people before deciding whom to tell. Consider what good would come from disclosing your HIV status to that particular person. Generally, it is recommended that you disclose to people who are close to you and can provide you with love, support and understanding.

When.

Avoid disclosing in the "heat of the moment"-for example, when you are angry, upset, or if you are not feeling well. Disclosure is a personal journey that sometimes may include roadblocks. It's best to approach disclosing your HIV status with a carefully mapped out plan.

Where.

Be mindful of your surroundings. In general, it's best to disclose in a calm, intimate space that allows you to express your feelings and show your emotions. However, if you fear someone may react violently, you may want to go to a public place.

How.

There isn't one best practice for telling someone about your HIV status. Someone on your medical team should be able to connect you to support groups that can help you learn communication skills for this precise task. You also may be able to practice with your doctor or with a friend who already knows your status.

Why.

There are several reasons why it might be worthwhile to disclose your HIV status to someone:

  • To give previous and current sexual partners the chance to get tested
  • To reduce the risk of transmission
  • To obtain support
  • To access medical care
  • To obey laws
  • To fight stigma

What do I do if someone has accused me of "infecting them with HIV?"

Here are some things you should know…

In more than 30 states, people living with HIV can be tried and imprisoned simply because a partner accuses them of hiding their HIV status. While originally thought to promote disclosure of one's HIV status, there's no proof these laws work. And they run counter to public health by discouraging HIV testing and treatment and perpetuating stigma. That said, you should seek legal counsel immediately if you have been accused of "infecting someone with HIV."

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Here are some things you can do…

Seek legal counsel immediately.

Get educated. There are many resources available online to help you become better informed about HIV prevention, treatment and care.

Get connected to organizations advocating on behalf of HIV decriminalization, including but not limited to:

What do I do if I don't see my question listed here?

Contact HRC

Email foundation@hrc.org, and we'll work to address it.

Footnotes

1 This resource is not a substitute for sound medical advice - and the examples throughout it don't cover every situation! We encourage you to seek out additional resources from other community advocates and, most importantly, talk to a knowledgeable healthcare provider before making any medical decisions.

2 Throughout this resource, the term "condomless sex" refers to sex without condoms or the daily use of HIV medications prior to exposure (i.e., PrEP).

3 Under the Americans with Disabilities Act (ADA), HIV and AIDS qualify as disabilities, even if asymptomatic, and employers are prohibited from discriminating on either basis. Be sure to contact the nearest Equal Employment Opportunity Commission (EEOC) office (www.eeoc.gov) within 180 days of a discriminatory event.

4 In more than 30 states, people living with HIV can be tried and imprisoned simply because a partner accuses them of withholding their HIV status. There’s no proof these laws work, and they run counter to public health by perpetuating stigma and subsequently deterring people from getting tested or treated for HIV. That said, you should seek legal counsel immediately if you have been accused of “infecting” someone with HIV.