What Do I Do? A Handbook to Understanding Health & HIV is a new resource by the Human Rights Campaign, in collaboration with AIDS United, designed to provide easy-to-read, up-to-date and actionable information about HIV prevention, treatment and care. Help us dismantle the stigma surrounding HIV, promote safer sex and maintain an open and honest dialogue by reading this handbook and sharing it with your sexual partners, loved ones, friends, family and social networks.[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 or treat HIV. And with the help of a knowledgeable healthcare provider, you can lead a long, healthy life regardless of your HIV status.

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 including HRC’s What Do I Do? A Handbook to Understanding Health & HIV.

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, Stigma Project and Sero Project.

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 say it is because they do not think they are likely to contract HIV. 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?

Keep in mind that all of these activities may increase your chances 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 including HRC’s What Do I Do? A Handbook to Understanding Health & HIV.

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, Stigma Project and Sero Project.

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. But with medical care, interventions exist today that can reduce the risk to below 5 percent.
  • Being pricked with a needle or other sharp object that has been used on someone living with HIV. This is a concern mainly for healthcare workers.

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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 including HRC’s What Do I Do? A Handbook to Understanding Health & HIV.

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, Stigma Project and Sero Project.

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.

Click Here to Learn More

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. Following are the 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 two to four 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. They are also significantly less likely to pass on HIV.
  • 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 including HRC’s What Do I Do? A Handbook to Understanding Health & HIV.

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, Stigma Project and Sero Project.

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 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.

While HIV is now a manageable, long-term 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.

Click Here to Learn More

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 including HRC’s What Do I Do? A Handbook to Understanding Health & HIV.

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, Stigma Project and Sero Project.

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 size and 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 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. Consider dating people living with HIV who are "undetectable." Research shows that people living with HIV who consistently take their medication can reduce the likelihood of passing on HIV by at least 96 percent. Dating people who don't know their HIV status, or who are not connected to care, can mean a much higher likelihood of contracting HIV.
  • 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.
  • Know about 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.
  • Know about PrEP. PrEP is an HIV prevention strategy that can be taken every day to significantly reduce the likelihood of transmission.

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 including HRC’s What Do I Do? A Handbook to Understanding Health & HIV.

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, Stigma Project and Sero Project.

What do I do if the person I like has HIV?

Here are some things you should know…

First, don’t freak out! The fact is, you’re much less likely to contract HIV from someone who is in treatment than someone who doesn’t know their status or isn’t connected to care at all. One of the most effective ways to prevent the spread of HIV is to date people living with HIV who consistently take their medication and have achieved an "undetectable viral load."

There are two kinds of safer sex strategies that can minimize 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 preparing people to deal with situations that may lead to challenging situations. They include:

  • Sexual health education
  • Condom negotiation
  • Risk-reduction counseling
  • Disclosure

Treatment-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 including HRC’s What Do I Do? A Handbook to Understanding Health & HIV.

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, Stigma Project and Sero Project.

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

Here are some things you should know…

PrEP is short for pre-exposure prophylaxis. It is an HIV prevention strategy that currently involves taking a once-daily pill to reduce the risk of acquiring HIV. 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). PrEP does not protect against other sexually transmitted infections or pregnancy. Using a condom provides additional protection in both of these situations.

Click Here to Learn More

Here are some things you can do…

Learn more about PrEP.

There are several resources available online to help you develop a baseline understanding of PrEP and its role in HIV prevention, including HRC’s What Do I Do? A Handbook to Understanding Health & HIV.

Get educated.

There are many resources available online to help you become better informed about HIV prevention, treatment and care including HRC’s What Do I Do? A Handbook to Understanding Health & HIV.

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, Stigma Project and Sero Project.

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.

Click Here to Learn More

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.

Click Here to Learn More

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…

More than 30 states have laws in place that make it illegal to withhold your HIV status from a potential sexual partner. In fact, many laws include references to behaviors that cannot transmit the virus, such as spitting or biting. While originally intended to promote disclosure of a person's HIV status, many community advocates and public health organizations have challenged the efficacy and utility of such laws.

Click Here to Learn More

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 including HRC’s What Do I Do? A Handbook to Understanding Health & HIV.

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 In this handbook, 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/AIDS qualifies as a disability, even if asymptomatic and employers are prohibited from discriminating on that basis. Be sure to contact the nearest Equal Employment Opportunity Commission (EEOC) office (www.eeoc.gov) within 180 days of a discriminatory event.

4 More than 30 states have laws in place that make it illegal to withhold your HIV status from a potential sexual partner. In fact, many laws include references to behaviors that cannot transmit the virus, such as spitting or biting. While originally intended to promote disclosure of a person's HIV status, many community advocates and public health organizations have challenged the efficacy and utility of such laws. That said, you should seek legal counsel immediately if you have been accused of infecting someone with HIV. Visit the Sero Project (www.seroproject.com) or Lambda Legal (www.lambdalegal.org) for more information about HIV criminalization.