Could my HIV positive test result be a mistake? Maybe I'm not really HIV positive!
Depending on the type of HIV test you had, there is a small chance that it will give what is called a “false positive.” To ensure your results are correct we send you to a doctor for a “confirmatory test” where you will have blood drawn from your arm and sent to a lab to be certain.
If I have HIV, does that automatically mean that my partner(s) also has it?
No. Your partner will still need to be tested to see if they are HIV positive or negative. If they are negative , that doesn’t have to be the end of your relationship; reducing your viral load to undetectable and/or using condoms will protect your HIV negative partner.
When should I start treatment?
Usually, as soon as possible. Your counselor will work with you to get you the earliest appointment available for your initial labs to confirm your positive HIV test, and check your viral load, CD4 count (a measure of how strong your immune system is), and recommend the best treatment regimen for you.
How many of my former sex partners do I have to tell?
It is best to inform everyone you have had sexual contact with since the last time you were tested. If you have never been tested it is best to provide the information for as many people that you have had sex with that you can, so they can get tested as well. Notifying previous sexual partners can be done by you, your counselor , or by the department of health. If your ccounselor ounsellor or the health department does this, they just advise the person they might have been exposed and recommend they get tested, they do not disclose your name.
What if I don't have insurance? Or if I don't have enough insurance?
If you are not insured, nearly every state has a program to pay for medications and lab work, depending on your income. If you don’t have enough insurance, other programs you may qualify for will help ensure you have enough coverage. Your counselor will help link you to care.
Do I need to stop having sex? Will I ever be able to have sex again?
People with HIV can continue to have full, satisfying , and even amazing sex lives. But it is safest if you you stop having sex until it is confirmed that you have reached an undetectable status. If you do have sex before you reach undetectable status, using a condom will protect your partner.
What is HIV and AIDS?
HIV stands for human immunodeficiency virus, a virus that attacks your body’s immune system. Someone is “HIV positive” when they test positive for HIV, meaning they have HIV in their blood and other bodily fluids.
AIDS stands for acquired immunodeficiency syndrome, which is the advanced stage of HIV disease. But because of effective treatments, not many people diagnosed with HIV today will ever progress to AIDS.
If someone doesn’t get tested until they are very sick, the HIV disease might have already progressed to AIDS. But in most cases, treatment can help restore their immune system so they only will have HIV. HIV and AIDS are not the same thing and should not be used interchangeably.
How is HIV transmitted?
The spread of HIV from one person to another is called HIV transmission. HIV is transmitted only by certain body fluids from a person who has untreated HIV. These body fluids include:
- Pre-seminal fluid
- Vaginal fluid
- Rectal fluid
- Breast milk
Is there a cure?
There is not yet a cure for HIV, but most people diagnosed today who are treated effectively will live as long as someone who does not have HIV.
Antiretroviral Therapy, called ART, is recommended for everyone who has HIV. ART prevents HIV from multiplying, which reduces the amount of HIV in your body (called the viral load). The less HIV in your body, the less damage to your immune system, and the less likely you will transmit HIV to your sex partners.
The goal of ART is to reduce the amount of virus in your body to a level where it cannot be detected in your blood, which is called being “undetectable.”
What is undetectable?
An undetectable viral load means that the level of HIV in the blood is too low to be detected by a laboratory. People with HIV who maintain an undetectable viral load do not transmit HIV to their sex partners.
“The test that you took today picked up that there are HIV antibodies present in your bloodstream. Now, we must have lab testing done to fully confirm these results as well as provide you information about your current white blood cell count, viral load and determine the best treatment for the most successful health outcome. You will now speak with your HIV testing counselor about the next steps including setting up your first appointment with a doctor who will work with you and explain your treatment options.”
What will my first Doctor's appointment look like?
The typical first doctor’s appointment will include several things. First, you will be asked to complete paperwork so that they can put you into the system. You will need your driver’s license or state id for this. Once paperwork has been completed you will meet with a nurse. Your nurse will take your regular vitals including a check of your blood pressure, height, weight, as well as your temperature. Next, the nurse will do your initial blood draw. This will require the nurse using a vein from your arm to draw blood. They will fill several tubes which will be sent off to determine your viral load, CD4 count, percentages, phenotype and genotype to help determine what treatments will work best for you. Following your blood draw, you will have your first meeting with your doctor. It is during this appointment that you should come prepared with all of your questions for the doctor written down. It is important in this meeting that you be as truthful as possible with any questions the doctor is asking. There is no need to be embarrassed or feel shamed as the doctor’s goal is to give you the best treatment and advice available. This can only be done if you are giving them the information they need to make a proper assessment. Following the meeting with the doctor, an appointment will be made (usually two weeks) to come back where they will review your labs with you. When going over your labs, if there is anything you don’t understand be sure to ask about it for clarity. It is at this second appointment the doctor will recommend and prescribe the best treatment option available for you.
Advancements over the last 40 years have made HIV not only something you can live with, but also thrive with. Due to advancements in science HIV can now be treated with a one pill a day regimen. The pill suppresses the reproduction of HIV in the body in effort to get you to an undetectable.
There are 40 different medications available giving doctors many options on choosing the best that will work with your diet as well as any other medications you may be on that could have an adverse effect with some of the medications. Some of these treatments require food when you take them so it is important that you are honest with your doctor about your daily habits, other medications or any barriers you may have accessing what you need to take your treatment regularly.
Your ongoing care will be quarterly (every 3 months). You will see your doctor and get your labs done to verify that you are remaining at an undetectable status. Your prescription is usually refilled every 25-27 days to ensure you don’t run out of your 30 day supply. Even if you are not feeling ill, you will need to take your treatment. This is the optimum way to ensure you can reach and remain at an undetectable HIV status. It is during this time you will want to assess if you are comfortable with your care facility by identifying if you feel the staff is culturally competent to address your needs. This starts with a few observations:
- Does the staff look like me?
- Do the materials look representative of my community?
- Does my doctor understand, acknowledge, and respect my sexual orientation and gender expression/identity?
It is important that your care is best suited for your individual needs which may require you to find services at another facility if they are not being adequately met.
Potential Scarcity of Resources
Unfortunately, not all healthcare systems are equal. Services for HIV can vary from state to state drastically. We know that services in the North don’t mirror that of the Southof South where it can be hard to find treatment facilities and navigate an HIV healthcare system that in some areas may be non-existent. This information is not to scare, but make you AWARE. Many have moved to different states because of better healthcare systems available for their HIV treatment. Although this option is hard, there are resources and options available. Speak with your counselor about where services are located. Although services may not be “near”, there are many systems in place to help assist with that. Voucher programs for travel to and from appointments. Delivery of medication in the mail or even some appointments being scheduled through telehealth platforms. Local non-profits are an excellent start for help when resources may be scarce.
When first diagnosed the one common overwhelming fear is others finding out and your requirement to tell future sexual partners. Disclosure is a personal thing. It is not a requirement to have to tell your friends and family immediately. Take your time and be comfortable with living. It is all about building self-efficacy to the point of realizing that HIV doesn’t change who you are. The more comfortable you are with being able to inform those you disclose to, the more at ease they can be in becoming a support to you. One must remember that disclosure is still a necessary part of living with HIV because many states have laws criminalizing the
“risk” of exposing others to HIV. So it is important to disclose when sexually active or sharing needles (if dealing with drug use) even when undetectable to protect yourself and others.
When you are ready, one of the best ways to help yourself is to connect with other People Living with HIV (PLHIV) Support from your family and friends is important, but there’s a unique value in talking to other people who share the experience of living with HIV. This brochure is designed to help you find other PLHIV. We’re here — and we’re ready to talk to you
- Telling the people closest to you about your HIV status may be very hard. Talking to someone who has been through that experience already can help you figure out how best to break the news and how to handle their questions and reactions.
- Most of us living with HIV have faced the fear of rejection, discrimination and shaming at some point. Because we have been there, we can help you get through this. Hearing about how we handled these feelings may help you think about how you could cope with the way you feel.
- The fact that we’re here is proof that life goes on. Sure, you know in your head that PLHIV often live a normal lifespan if they get the care and medications they need. But, in your heart, you may still feel like your life is already over. Just hanging out with PLHIV who are living normal lives may help you develop a realistic view of your own future.
- Local PLHIV can give you practical tips on where to get good medical care in your area, what support services are available, and other useful hints for dealing with your HIV.
We know that “care” to most means treatment with an undetectable viral load. However, there are many other issues that you may be dealing with on top of this diagnosis. There are many programs that can assist with food, shelter, mental health services, and additional circumstances you may need assistance with. Be sure to speak with your counselor if you need additional help in other areas outside of treatment and adherence to medication.
You can get your basic questions answered by your state HIV Hotline. These are listed by state-by-state here. Or, if you are in the US or Canada, you can call a national HIV hotline at 800-448-0440 and they can connect you with your state hotline.
The Counter Narrative Project
The Counter Narrative Project
speaks truth to power. CNP shifts
narratives about Black gay men to change policy and improve lives.
Thrive S.S. works toward achieving
health equity for Black gay men,
particularly those living with HIV,
through direct support, advocacy, and
building collective community power.
SERO works to build and support PLHIV networks and to end inappropriate criminal prosecutions of PLHIV, including for non-disclosure of their HIV status, potential or perceived HIV exposure or HIV transmission.
US PLHIV Caucus
US PLHIV Caucus comprises
organizations, coalitions, networks or
client groups of people living with HIV,
as well as independent advocates living with HIV. The HIV Caucus, a collective, unified voice for people living with HIV in the U.S.