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Living with HIV as a Transgender Woman: How to Protect Yourself and Others

A four-panel collage of Transforming Health photos featuring transgender people. Three panels show individuals speaking with health professionals. One panel shows an individual filling out a form.

Thanks to better treatments, people with HIV are living longer and healthier lives than ever before. The information and tips included here can help to keep you and your partners healthy .

To learn more about how HIV impacts transgender women, visit Transgender Women and HIV.

HIV Treatment: Taking Care of Yourself and Protecting Others

Talking About Sex Can Feel Awkward
Talking about sex with anyone — especially a health care provider — can feel awkward. Here are a few tips to help you feel more comfortable:

  • Remember that the job of a health care provider is to care for your overall health. This includes your sexual health.
  • Most health care providers want to help you, not judge you. If you approach the conversation openly and honestly, chances are they will, too.
  • Whatever you have to say, your health care provider has likely heard it before. And they may have a great suggestion for you.

Once you are diagnosed with HIV, it is important to get into medical care and begin HIV treatment. Getting and staying on treatment will help you manage your HIV. It will also help you make decisions that can keep you healthy for many years.

To protect your health and the health of your sexual partners, your health care provider will prescribe HIV medicines known as antiretroviral therapy (ART). ART usually consists of three or more medicines. These medicines are sometimes combined into one pill. ART is extremely effective. It can reduce the level of HIV in the blood to such a low level that current HIV tests can’t detect it. This is called undetectable viral load. Achieving a very low or undetectable viral load is the goal of HIV medicines.

People who take their HIV medicines as prescribed and have very low or undetectable viral loads still have HIV. But they can stay healthy and live long lives. Having very low levels of HIV also greatly reduces the risk of transmitting HIV to sexual partners.

“Being honest with your health care provider is paramount. It’s like any other relationship, you want honesty and trust so that you both can get the most out of that interaction. Work with them to create the best plan of action for fighting this thing.”
– Jamie, living with HIV since 2015

How To Make Your Viral Load Very Low or Undetectable

Will taking HIV medicines interfere with my hormone therapy?

The drugs most commonly recommended for HIV have no known interactions with hormones. Talk to your health care provider about any concerns you have about taking HIV medicines and hormone therapy at the same time. Your health care provider will work with you to help you stay healthy. They will also help to ensure that your hormone therapy stays on track.

Find a treatment plan that works for you.

Work with your health care provider to develop a treatment plan. A successful treatment plan includes your medical history. It also takes into account whether your HIV is resistant to any medicines. Today, most HIV medicines have few side effects. Most patients can find a treatment plan that is right for them.

“At first, I was worried. Would my HIV medication stop me from getting a more feminized look? My HRT [hormone replacement therapy] provider and my HIV provider assured me that there were no interactions, and I feel better every day.”

– Jamie, living with HIV since 2015

Take your HIV medicines every day.

HIV medicines can keep you healthy for many years. They also greatly reduce your chance of transmitting HIV to sexual partners if taken the right way, every day. Missing doses increases your risk of developing health issues caused by HIV. It also increases your risk of transmitting HIV to others.

Some people may find that taking HIV medicines every day is tough. But many people find a way to fit their HIV medicines into their daily routines. Here are some ways to remember to take your HIV medicine every day:

  • Put your pill bottle next to your toothbrush. This will help you to remember to take your HIV medicine when you brush your teeth in the morning or at night.
  • Set daily reminders or alarms on your phone that prompt you to take your HIV medicine. CDC has a new, easy to use app, Every Dose, Every Day, designed to help people to take their HIV medicines consistently. You can download the app for free on Google Play or the iTunes App Store. To learn more, visit Every Dose, Every Day.
  • Use a pill box with sections for each day of the week. This will allow you to quickly check to see whether you have taken your HIV medicine each day.
  • If you have a good routine for taking your hormones, use the same approach to remember to take your HIV medicines.

If something is keeping you from taking your HIV medicines as prescribed, tell your health care provider. They can help you get past any barriers so you can take your medicines and stay healthy. Working with a health care provider whom you trust is important as you should feel comfortable discussing any issues or questions with them.

“If someone has trouble taking their medication, I would ask them, ‘How important is your health, your life, living in your true identity? If it’s very important, you should take care of yourself, take your medication. Find a routine that works for you!’”

– Jamie, living with HIV since 2015

Take an active role in your medical care.

To get the most out of your HIV treatment, it is important that you take an active role in your medical care. This includes taking your HIV medicine consistently as prescribed. Here are some more tips:

  • Keep all of your medical appointments. There are many tools to help you plan for and remember your appointments. You can mark your appointment days in a calendar or set reminders on your phone. You can even download “reminder apps” if you have a smartphone.
  • Be prepared for your medical appointments. Before an appointment, write down questions or concerns that you want to discuss with your health care provider. You can also write down the answers you receive during your visit. No question is too silly or uninformed. Your health care provider will answer any questions you may have. They may also refer you to a different provider or specialist if any of your questions need a response from another source.
  • Communicate openly and honestly with your health care provider. They need to know what’s going on with you so they can help you manage your care and treatment. Talk with your provider about your sexual health. You can also discuss if you want to take hormones or have surgery. It’s also important to let your health care provider know if you are interested in having children someday.
  • Share any concerns you have about HIV treatment with your health care provider. Some transgender women worry about interactions between hormone therapy and HIV medicines. Your health care provider can make sure you are taking HIV medicines with no known interactions. They can monitor your hormone levels to ensure they stay on target.
  • Pay attention to your emotional and mental health. An HIV diagnosis can be a life-changing event. You may feel many emotions — sadness, hopelessness, and even anger. Work with your health care provider to get the support you need. Good mental health will help you live your life to the fullest. It is also essential for treating HIV successfully.
  • Keep track of your medical services. Your health care team may include many providers. Keep records of your lab results, medical visits, appointment dates and times, medications and medication schedules, and care and treatment plans. You may put this information in a folder and place it somewhere safe. You can also use an app to help keep track of these details.

It may be hard to collect and keep track of this information. This may be especially true if your housing situation is unstable. If you have a case worker, they may be able to help you. Some clinics offer a secure website where you can check lab results, request prescription refills, and view your care plan.

  • If you don’t have a regular provider, you can still get the support you need to take an active role in your medical care. You can visit a community health center. You can also go to a drop-in center near you.
  • If you don’t have health insurance or if you can’t afford your copayment or coinsurance, financial help may be available. You may be able to get assistance from government-funded programs. These include Medicaid, Medicare, or the Ryan White HIV/AIDS Program. Help may also be available from community health centers. For a Ryan White health care provider, visit https://findhivcare.hrsa.gov.

“I asked friends and my support group for recommendations to find a health care provider. I love my doctor; we sit and have great conversations. She talks about different things with me without stigma, without judgment, and that’s very important.”

–Jada, living with HIV since 2015

Consider having less risky forms of sex.

If your partner — whether it’s someone you’re casual with or in a monogamous relationship with—refuses to use a condom for vaginal or anal sex but you still want to have sex, suggest a sexual activity that has a lower risk of spreading infection.

An HIV Diagnosis Can Be a Life-Changing Event

You may feel many emotions like sadness, hopelessness, and even anger. But there are people who can help. Case managers, counselors, and health educators will have the tools to help you. These services and tools may even be available at your health care provider’s office. Many cities also offer support groups to help transgender women after their HIV diagnosis.

You are not alone — HIV treatment works! Watch inspiring stories from Jamie, Jada, Whitney, and Jennifer.

“My advice: Don’t wait until your body has disintegrated. Don’t wait until your immune system is so fragile that someone can sing and break it. Get into care and stay in care. Living well means not waiting, and instead living to the max. I have made it a point to live, and I’m going to rock it out!”
– Jada, living with HIV since 1995

Status Disclosure: Telling Your Partners and Encouraging Them to Get Tested

Risk Reduction Tool

You may find it tough to tell your sexual partners that you are living with HIV. There is no one-size-fits-all approach. You will find that plenty of people will be accepting of your status. You may even find out that your partner(s) is positive, as well. But the reality is, there may be times when a partner is less accepting of your HIV status.

If a partner cannot accept you, or chooses not to be with you, that can be difficult. Many people living with HIV have dealt with this situation and have found their way through it—and you will get through it, too. There are others out there who will respect and accept you.

While disclosing your status is an individual choice, it is important to keep in mind that many states have laws that require you to tell your sexual partners if you are HIV-positive before you have sex (anal, vaginal, or oral) or share drugs or needles to inject drugs. In some states, you can be charged with a crime if you don’t tell your partner your HIV status, even if your partner doesn’t become infected. Learn more about state HIV-specific criminal laws.

Knowing the law is important. At the same time, disclosing your status remains an individual choice that can have several benefits to your relationships, health, and your partner’s health.

Don’t Share Your HIV Medicines With Your Partners To Take as PrEP or PEP

You need each dose of your HIV medicine to stay healthy. Your partners should see a health care provider to figure out whether PrEP or PEP is right for them.

If you think your partners have been exposed to HIV, encourage them to talk with their health care provider or an emergency room doctor about PEP right away. For more information, visit PEP.

Benefits of Telling Your Partners

  • Your partners can get tested for HIV. If they are positive, they can get into medical care.
  • Getting into care and on treatment as soon as possible is important to stay healthy. It also reduces the chances of transmitting HIV.
  • You can help keep your partners from getting HIV if they are HIV-negative.
  • If your partners are HIV-negative, the most important thing you can do to help them stay HIV-negative is to take your HIV medicines and have a very low or undetectable viral load. You can also work with them and a health care provider to make a plan to help them stay that way. Other ways to prevent HIV are using condoms with lubricants and choosing less risky kinds of sex (like oral sex or mutual masturbation). Finally, it is important to encourage your partners to get tested regularly.1
  • Your health care provider may also encourage your HIV-negative partners to use PrEP (pre-exposure prophylaxis). It is a pill that can prevent HIV when taken consistently.
  • If a condom breaks or if you forget to use a condom during sex, your partners can receive PEP (or post-exposure prophylaxis). If started right away (within 72 hours of exposure), PEP can stop HIV.

Learn more about PrEP and PEP for transgender women.

Your partners can provide support and encouragement.

  • Having HIV can be challenging. Having the emotional support of someone close to you can make it easier to live with HIV.
  • If your partners know your status, they can remind you to take your HIV medicines. This will help keep your viral load very low or undetectable. Being very low or undetectable protects your health. It also reduces the chance that you will pass HIV on to others.

Note: If you’re in a situation where you don’t feel comfortable disclosing your HIV status—for instance, you have sex in exchange for money or other services—you can still have safer sex.

Protecting Yourself and Your Partners From Other Sexually Transmitted Diseases

Even if you are taking steps to protect your partners from HIV, you can still get or give other STDs.

STDs — such as syphilis, chlamydia, and gonorrhea — can increase how much HIV virus is in body fluids like vaginal or rectal fluids and semen. This increases your risk of transmitting HIV to your sexual partners. Also, if your HIV-negative partners have an STD, they are more likely to get HIV from you.

How To Avoid Other STDs

Use condoms.

If used the right way every time you have sex, condoms can help protect you and your partners from HIV and other STDs. Sometimes condoms break or slip during sex. To help prevent this, use a water-based or silicone lubricant.

If your sexual partners do not want to use a condom, the following points may help you negotiate condom use with them:

  • Using a condom does not mean that you don’t trust your partner or that you have cheated on your partner. It just means that you want to take good care of your own health — and your partner’s health.
  • A partner may say that they can’t use condoms because they don’t fit or that they are allergic to latex. However, condoms are available to fit penises of any size and shape. Latex-free condoms are also available.
  • You have every right to say no and stop sex if your partner doesn’t want to use a condom.
  • If you don’t want to or are unable to use a condom, you can still have safer sex that lowers the risk of transmitting HIV to your partners. Mutual masturbation or using sex toys are ways to have sex with little or no risk of transmitting HIV. Oral sex is also a less risky type of sex. But you can still get or give some types of STDs, like syphilis, by having oral sex without a condom.

Use a lubricant during sex.

Use lubrication during vaginal and anal sex. If you have had bottom surgery, your vagina may not self-lubricate. Sex can cause small tears in the lining of your vagina or anus. This can increase the risk that you will get an STD. Using a lubricant decreases this risk.

Get tested regularly.

Some STDs may not show symptoms. You may not know you have an STD unless you get screened. Regular testing is important. Many STDs can be treated easily if they are caught early. How often you get tested depends on the type of sex you have had (for example, receptive or insertive oral, anal, vaginal). Be sure to share this information with your health care provider. STDs in neovaginas (bottom surgery) are rare. But you should let your provider know if you have had bottom surgery and have had sex with your vagina.

Footnotes

  1. New York City Department of Health PrEP webpage [Internet]. Available from: http://www1.nyc.gov/nyc-resources/service/4881/preventing-hiv-and-aids-using-prep-and-pep

A Note on Terminology

Transgender is used here as an umbrella term to describe people who have a gender identity that is different from their sex listed on their birth certificate. Gender identity is on a spectrum. It is important to keep in mind that although some transgender people prefer the binary classification of men or women, many reject it. Instead, they may have other identities, such as non-binary, gender expansive, genderqueer, or trans-feminine/trans-masculine. These terms emphasize a broader view of gender and may provide a more nuanced understanding of what it means to be a transgender person.

A note regarding HIV research published in academic journals: An important consideration in research with transgender people is the challenge to accurately classify transgender women for surveillance/research purposes. Not all jurisdictions collect data on gender identity that include transgender people, and some researchers may use older methods that can misclassify transgender women as men who have sex with men. This can also happen as some transgender people may not identify themselves as transgender in health care settings due to fear of discrimination or previous negative experiences. This mix of limitations can result in over- or under-estimating the number of transgender people. As such, it is important to consider methodologies when interpreting data and surveillance findings. As the field is developing newer and more precise ways to identify transgender identity for research and surveillance purposes, it is important to consider methodological approaches, particularly for studies that include both men who have sex with men and transgender women. The most accurate method uses a two-step process, including two questions: “What is your current gender?” AND “What sex were you listed as at birth?” The large majority of studies cited in this document use a two-step process, however one is a meta-analysis and likely includes studies with a one-step process to determine gender identity. For more information about using a two-step process, please refer to the section Collecting Sexual Orientation and Gender Identity.

1 James SE, Herman JL, Rankin S, et al. The report of the 2015 U.S. Transgender Survey. http://www.transequality.org/sites/default/files/docs/USTS-Full-Report-FINAL.PDF. Washington, DC: National Center for Transgender Equality; 2016.
2 Clark H, Babu AS, Wiewel EW, Opoku J, Crepaz N. Diagnosed HIV Infection in Transgender Adults and Adolescents: Results from the National HIV Surveillance System, 2009-2014. AIDS Behav (2017) 21:2774–2783.

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