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PrEP, PEP and Transgender Women: What Do You Need to Know?

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.

Transgender women who want to prevent HIV may benefit from taking PrEP. PrEP is a pill that can prevent HIV when taken consistently.

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

PrEP Basics

PrEP is for people who

  • Are HIV-negative
  • Have a high chance of being exposed to HIV through sex or drug injection
  • Are able to take a pill daily1

PrEP stands for pre-exposure prophylaxis. Prophylaxis means to prevent the spread of an infection or disease.

  • PrEP can help keep you from getting HIV if you are exposed to the virus.
  • PrEP requires taking one pill every day.

PrEP is different from PEP (post-exposure prophylaxis).

How Does PrEP Work?

  • If you are exposed to HIV while taking PrEP, the medicines in PrEP can stop the virus from spreading throughout your body. The medicines in PrEP are called tenofovir disoproxil fumarate and emtricitabine (also known as Truvada®).
  • PrEP works best when taken every day.
  • Do not skip a dose. PrEP is not an emergency pill or a morning-after pill. If you need an emergency option, learn more about PEP.
  • While the effectiveness of PrEP specifically for transgender women has not yet been proven in trials,2 PrEP has been shown to reduce the risk of getting HIV during sex.3 Because of this, it may be considered in all persons at risk of acquiring HIV sexually.
  • PrEP can cause mild side effects. These include stomach pain, weight loss, and headaches, especially when you first start taking PrEP. Nausea is one of the most common side effects of PrEP. However, it is often mild and usually goes away within 1 month.2
  • PrEP may not be right for everyone. You can talk with your health care provider to learn whether PrEP is right for you.

What Do I Do If I Miss a Dose of PrEP?

  • Talk to your healthcare provider about how to take PrEP. PrEP works best when taken consistently. If taken every day, PrEP delivers enough medicine to stop HIV from spreading throughout your body. But there may be times when you forget to take PrEP every day.
  • If you miss a dose of PrEP, do not take two doses the next day. Instead, keep taking your PrEP as you would had you not missed a dose. If you miss more than one dose of PrEP, you should talk to your health care provider about how to get back on track.

Will PrEP Interfere With Hormone Therapy?

  • More studies are needed on this topic. But there are no known drug conflicts or interactions between the medicines used in PrEP and hormone therapy. There is no known scientific reason why the drugs cannot be taken at the same time.5
  • If you are worried that PrEP will affect your hormone therapy, ask your health care provider to check your hormone levels.
  • People who use PrEP should see their health care provider every 3 months for follow up, HIV tests, and to have their prescriptions refilled. This visit could be combined with your hormone therapy appointments.

Deciding Whether PrEP Is Right for You

I am thinking about taking PrEP to prevent HIV. What now?

 

Questions to ask your health care provider:

  • Is PrEP a good choice for me?
  • Will PrEP have a negative effect on my hormone therapy?
  • Will my hormone therapy make PrEP less effective?
  • How much will PrEP help me to avoid HIV?
  • What else can I do to avoid HIV?
  • How much will PrEP care cost me? Can I get help paying for it?
  • Does PrEP have any side effects that I should be worried about? How long do they usually last?
  • What types of medical tests will I need to get PrEP? How often will I need to get these tests?
  • Will you prescribe PrEP for me? If not, can you tell me why? Can you tell me where I can go to get PrEP?

Getting PrEP

How can I get started with PrEP?

Step 1—Talk with your health care provider about whether PrEP is right for you.
Step 2—If you and your health care provider agree that PrEP might help you to avoid getting HIV, they will test you for HIV to be sure you are negative and for other sexually transmitted diseases that may need to be treated. They will also test to see whether your kidneys are working well before you start PrEP. However, PrEP rarely affects kidneys.
Step 3—If PrEP is a good option for you, your health care provider will prescribe it for you, or refer you to another provider who can prescribe it.

How Do I Pay for PrEP?

  • REMEMBER!
    Take your pill every day. Do not skip a dose!

    • Take it every day. Pair it with activities you do every day, like eating breakfast or exercising.
    • If you take hormones, use the same reminders and approaches to remember to take PrEP.
    • If you have trouble remembering to take your pill or want to stop PrEP, talk with your health care provider.

    If you have insurance, check to see if PrEP is covered. Many public and private insurance plans pay for PrEP.

  • If you have limited insurance or no insurance, medication assistance programs may help make PrEP affordable. However, some of these programs won’t cover the cost of health care provider appointments or lab tests associated with taking PrEP.

Once You Get On PrEP

Follow your health care provider’s advice about how to take PrEP. PrEP can only prevent HIV if you take it consistently.

PEP for Emergency Help —What Do I Do If I Think I’ve Been Exposed to HIV?

You can get or transmit HIV only through specific activities. The most common ways that people get or transmit HIV are through sexual activities and sharing needles or syringes. Only certain body fluids can transmit HIV. These include blood, semen (cum), preseminal fluid (pre-cum), rectal fluids, vaginal fluids, and breast milk. If you think you were exposed to HIV in the past 72 hours—for example, if you had sex without a condom with someone who is HIV-positive—PEP may be able to keep you from getting HIV.

What is PEP?

  • PEP stands for post-exposure prophylaxis. It is an emergency medicine to prevent HIV. As soon as you start taking PEP, these medicines stop HIV from multiplying. PEP should be taken for a full 28 days. During this time, the cells with HIV die, and the virus stops spreading to the rest of your body. Since PEP is not 100% effective, you should continue to use condoms with sex partners and use safe injection practices while taking PEP.

When do I take PEP?

  • PEP works best when started right away. You should start taking it within 72 hours after you have been exposed to HIV.

Where do I get PEP?

  • You can get PEP at an emergency room (ER), urgent care clinic or an HIV clinic. Go as soon as you have realized you may have been exposed. If an ER says they don’t provide it then go to an HIV clinic.

How do I get started with PEP?

  • Talk to your health care provider about PEP. Your health care provider will test you for HIV before prescribing PEP to make sure you do not already have HIV. Your health care provider may test you for up to 6 months after you begin taking PEP to make sure you stay HIV-negative.
  • PEP is not 100% effective. You should use condoms and practice safe injection strategies while taking PEP. These strategies can help keep you from being exposed to HIV again. They also reduce the chances of transmitting HIV to others if you do become infected.

How do I pay for PEP?

  • Paying for PEP. In many states, PEP is covered by insurance, including Medicaid. If you are not covered under insurance, there are assistance programs run by various companies. Ask your health care provider to apply for free PEP through a medication assistance program. If you’re prescribed PEP after a sexual assault, you may qualify for partial or total reimbursement for medicines and clinical care costs through the Office for Victims of Crime, funded by the US Department of Justice (see the contact information for each state).

If you think you were exposed to HIV, go immediately to an emergency room, urgent care clinic or an HIV clinic and ask for PEP. You can get PEP at any licensed prescriber.

Footnotes

  1. New York City Department of Health PrEP
  2. Thigpen MC, Kebaabetswe PM, Paxton LA, Smith DK, Rose CE, Segolodi TM, Henderson FL, Pathak SR, Soud FA, Chillag KL, Mutanhaurwa R, Chirwa LI, Kasonde M, Abebe D, Buliva E, Gvetadze RJ, Johnson S, Sukalac T, Thomas VT, Hart C, Johnson JA, Malotte CK, Hendrix CW, Brooks JT; TDF2 Study Group. Antiretroviral preexposure prophylaxis for heterosexual HIV transmission in Botswana. N Engl J Med. 2012;367(5):423‐34.
  3. Information is lacking on how surgeries that includes vaginoplasty may increase or decrease HIV transmission risk.

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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