FAQs About HIV and Pregnancy



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Medically reviewed by Emily Barr, PhD, RN, CPNP-PC, CNM, ACRN, FACNM, FAAN

It might feel overwhelming if you’re living with
human immunodeficiency virus (HIV) and want to get pregnant. You might wonder if you could pass on the virus to your baby, or if you can keep taking your HIV medications while pregnant. These concerns are valid.

But many women
living with HIV can and do go on to deliver a healthy baby. Every year, 3,500 people living with HIV in the United States give birth.

We’re here to provide some answers that may ease your mind and help you have a conversation with your healthcare provider.

Can I get pregnant if I have HIV?

Yes, you can. But it’s ideal to talk with your HIV specialist before you get pregnant. This can help make sure you’re at your healthiest before getting pregnant, allow for any medication adjustments, and help keep you from transmitting HIV to your baby.

Of course, surprise pregnancies can happen, so if you find out you’re pregnant, let your healthcare provider know as soon as possible.

As long as you are on medications for HIV and your viral load remains undetectable, your chances of transmitting HIV to your baby can be less than 1%. An undetectable viral load means the amount of HIV virus in your blood is so low that a lab test can’t pick up the virus.

Being pregnant at age 35 or older (called advanced maternal age or geriatric pregnancy) comes with certain health risks compared to people under age 35 regardless of your HIV status, including:

The research is limited on those who are living with HIV and are pregnant over age 35, but it is possible that there may be higher risks.

Can I continue HIV medications while pregnant?

Yes, you can and, in fact, you should. It’s important to take HIV medications while pregnant to help protect both your health and the health of your baby. This can greatly reduce the chances of transmitting HIV to your baby.

Don’t skip doses and take your medications at the same time every day to keep your viral load as low as possible.

Many of the medications for HIV are thought to be safe to take when you’re pregnant. But, depending on what you take and how far along you are in your pregnancy, your healthcare provider might suggest you change up some of the HIV medications you’re currently taking if you do become pregnant. It’s important to talk to your healthcare provider to find out what the pros and cons of the possible medications are.

What are the risks to the baby if I’m living with HIV?

Most babies who get HIV, get the virus during delivery. If you’re having a vaginal birth, your healthcare provider may give you medications through an IV (intravenous) line that can lower the chances of transmitting the virus to your baby. If your viral load is high, you might have a cesarean section and get IV medication. This can help decrease the risk of transmission.

HIV can also pass through the placenta and infect the baby in utero. But, if you continue to take your HIV medications as directed throughout your pregnancy, labor and delivery, and give your baby HIV medications for two to six weeks after they’re born, your baby has less than a 1% chance of getting HIV.

Studies have shown that women who are living with HIV are up to two to three times more likely to have pregnancy complications than HIV-negative women. These complications can happen even if the HIV-positive women are taking antiretroviral therapy (ART). Possible complications include:

  • Miscarriage or stillbirth
  • Having a baby who is born with a low birth weight
  • Preterm, or very early, delivery

Can I breastfeed if I have HIV?

You can choose to feed your baby your milk through breastfeeding, chestfeeding or pumping with a greater than 99% chance of not transmitting HIV if you are on HIV medications and your viral load is undetectable. The pros and cons should be discussed with your key family members and your HIV specialist to make the best decision for you and your baby.

If you are on ART, the World Health Organization guidance for breastfeeding is the same as for people who are not living with HIV.

Can I take PrEP while pregnant or breastfeeding?

It is safe to take PrEP (pre-exposure prophylaxis) while you’re pregnant or breastfeeding to prevent HIV transmission. PrEP is safest when taken as a daily pill because PrEP injections aren’t approved in pregnancy.

PrEP is taken by people who don’t have HIV but are at high risk. You might want to take PrEP if you have a partner who is living with HIV, have or have had unprotected sex, or share or have shared needles during injected drug use.

If your partner has HIV, it’s also a good idea to test often because the risk of transmitting the virus to your baby is highest if you get the virus during pregnancy or while breastfeeding.

Will I be considered a high-risk pregnancy and need more doctor appointments?

Yes, your pregnancy will be considered high risk because living with HIV can put you at an increased chance of pregnancy complications, such as miscarriage, stillbirth and low birth weight. And you will have more appointments because you will need to see your HIV team as well as your OB team. Your healthcare team, including your HIV specialists and your OB or midwife, will want to monitor you more closely in order to plan for a healthy birth and avoid complications. They will check routine prenatal labs like your kidney and liver health, iron levels, blood sugar and also how well the HIV medications are working.

You also might be offered certain vaccinations such as influenza, Tdap, RSV, Covid-19, pneumococcal and hepatitis A and B if needed.

We’ve come a long way, and it’s not only possible but likely that your baby will be born without HIV. Talk with your healthcare team about how you can have the healthiest pregnancy possible while living with HIV.

This educational resource was created with support from Merck.

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Preguntas frecuentes sobre el VIH y el embarazo



English

Emily Barr, PhD, RN, CPNP-PC, CNM, ACRN, FACNM, FAAN, hizo la revisión médica de este documento

Podría ser abrumador vivir con el
virus de inmunodeficiencia humana (VIH) y desear embarazarse. Podrías preguntarte si transmitirás el virus a tu bebé o si puedes seguir tomando tus medicamentos contra el VIH mientras estás embarazada. Estas preocupaciones son válidas.

Pero muchas mujeres que
viven con el VIH pueden hacerlo y tienen bebés saludables. Cada año, 3,500 personas que viven con el VIH en Estados Unidos tienen partos.

Aquí encontrarás algunas respuestas que pueden tranquilizarte y que serán útiles para que mantengas conversaciones con tu proveedor de atención médica.

¿Puedo embarazarme si tengo el VIH?

Sí, puedes hacerlo. Pero es ideal hablar con tu especialista del VIH antes de que te embaraces. Esto puede ser útil para que estés lo más saludable posible antes de que te embaraces, para permitir ajustes de los medicamentos y para evitar que transmitas el VIH a tu bebé.

Desde luego, pueden ocurrir embarazos sorpresa, así que si descubres que estás embarazada, avisa a tu proveedor de atención médica lo antes posible.

Mientras estés tomando medicamentos contra el VIH y tu carga viral esté a niveles indetectables, las probabilidades de que transmitas el VIH a tu bebé pueden ser menos que el 1%. Una carga viral indetectable indica que el nivel del virus del VIH en tu sangre es tan bajo que no se puede detectar.

Estar embarazada a los 35 años o más (también conocida como edad materna avanzada o embarazo geriátrico) viene con algunos riesgos médicos en comparación con personas que todavía no tienen 35 años, independientemente de tu condición de VIH, incluyendo:

  • Mayores tasas de abortos espontáneos
  • Mayor riesgo de trastornos genéticos
  • Complicaciones durante el embarazo, tales como presión arterial alta o diabetes

Las investigaciones son limitadas para personas que viven con el VIH y tienen embarazos después de los 35 años, pero es posible que hayan más riesgos.

¿Puedo seguir tomando medicamentos contra el VIH durante el embarazo?

Sí, puedes y, de hecho, deberías hacerlo. Es importante que tomes los medicamentos contra el VIH durante el embarazo porque eso será útil para proteger tu salud y la de tu bebé. Eso puede reducir de manera importante las probabilidades de transmitir el VIH a tu bebé.

No omitas dosis y toma tus medicamentos todos los días a la misma hora para que tu carga viral sea lo más baja posible.

Se considera que muchos medicamentos contra el VIH pueden tomarse en forma segura durante el embarazo. Pero, dependiendo de lo que tomes y en qué etapa estés de tu embarazo, tu proveedor de atención médica podría sugerir que cambies algunos de los medicamentos contra el VIH. Es importante que hables con tu proveedor de atención médica para identificar cuáles son las ventajas y desventajas de los posibles medicamentos.

¿Cuáles son los riesgos para el bebé si vivo con VIH?

La mayoría de bebés que se contagian de VIH, contraen el virus durante el parto. Si tienes un parto vaginal, tu proveedor de atención médica podría proporcionarte medicamentos mediante una línea IV (intravenosa) que puede reducir las probabilidades de que transmitas el virus a tu bebé. Si tu carga viral es alta, podrías verte obligada a tener una cesárea y a recibir medicamentos IV. Esto puede ser útil para reducir el riesgo de una transmisión.

El VIH puede pasar a través de la placenta e infectar al bebé en el útero. Pero, si sigues tomando tus medicamentos contra el VIH tal como se indicó durante tu embarazo, alumbramiento y parto, y proporcionas a tu bebé medicamentos contra el VIH durante dos a seis semanas después del nacimiento, tu bebé tendrá menos de 1% de probabilidades de contraer el VIH.

Estudios han demostrado que mujeres que viven con el VIH tienen dos a tres veces más probabilidades de tener complicaciones durante el embarazo que mujeres que no tienen el VIH. Estas complicaciones pueden ocurrir incluso si mujeres que tienen el VIH están sometiéndose a terapias antirretrovirales (TAR). Las posibles complicaciones incluyen:

  • Aborto espontáneo o parto de un feto muerto
  • Tener un bebé que nace con peso bajo al nacimiento
  • Parto pretérmino o prematuro

¿Puedo amamantar si tengo el VIH?

Puedes optar por alimentar a tu bebé con tu leche mediante lactancia materna o natural o extrayéndola con una bomba con una probabilidad de más del 99% de no transmitir el VIH a tu bebé si estás tomando medicamentos contra el VIH y tu carga viral no puede detectarse. Deberían discutirse las ventajas y desventajas con tus familiares importantes y tu especialista del VIH para que tomes la mejor decisión para ti y tu bebé.

Si te estás sometiendo a una TAR, la pauta de lactancia de la Organización mundial de la salud es la misma que para personas que no viven con el VIH.

¿Puedo tomar PPrE durante el embarazo o la lactancia?

Puedes tomar PPrE (profilaxis previa a la exposición) en forma segura durante el embarazo o la lactancia para prevenir la transmisión del VIH. Lo más seguro es tomar la PPrE como pastillas diarias porque las inyecciones PPrE no están aprobadas durante el embarazo.

La PPrE la toman personas que no tienen el VIH pero que tienen un alto riesgo. Podría ser conveniente que tomes la PPrE si tienes una pareja que vive con el VIH, si tiene o ha tenido sexo sin protección o si comparte o ha compartido jeringas para consumir drogas mediante inyecciones.

Si tu pareja tiene el VIH, también es conveniente que te sometas a pruebas frecuentemente porque el riesgo de transmitir el virus a tu bebé es mayor si contraes el virus durante el embarazo o la lactancia.

¿Se considerará que mi embarazo es de alto riesgo y deberé tener más consultas médicas?

Sí, se considerará que tu embarazo es de alto riesgo porque vivir con el VIH puede incrementar las posibilidades de complicaciones durante el embarazo, tales como abortos espontáneos, partos de fetos muertos y bebés de bajo peso. Y tendrás más consultas porque deberás visitar a tu equipo del VIH y a tu equipo obstétrico. Tu equipo de atención médica, incluyendo tus especialistas del VIH y tu ginecólogo o partera, desearán monitorearte más cuidadosamente para planificar un nacimiento saludable y para evitar complicaciones. Realizarán pruebas prenatales rutinarias de laboratorio de tus riñones, salud hepática, niveles de hierro, niveles de azúcar en la sangre y también de la efectividad de los medicamentos contra el VIH.

Es posible que también te ofrezcan algunas vacunas tales como la de la influenza, del Tdap, del VRS, del Covid-19, neumocócicas y de la hepatitis A y B, si fuese necesario.

Hemos progresado mucho y es probable y muy posible que tu bebé nazca sin el VIH. Habla con tu equipo de atención médica para ver cómo puedes procurar al máximo la salud de tu embarazo si vives con el VIH.

Este recurso educativo se preparó con el apoyo de Merck.

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Lack of Access to PrEP



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When HIV, the virus that causes AIDS, was first identified in the 1980s, it almost certainly a death sentence.
More than 100,000 Americans died from the new disease in that decade. The idea that one day there might be medicines to prevent infection was a fantasy.

Today, these medicines, called pre-exposure prophylaxis (PrEP), do exist, but most people who could benefit don’t take them. The policies that govern these medicines — and the enforcement of those policies — are largely to blame.

PrEP is wildly effective. PrEP reduces the risk of getting HIV from sex by
99%, and from injection drug use by nearly 75%, when taken as prescribed.

Read: PrEP and PEP: Prevention for HIV >>

An estimated
1.2 million people in the United States could benefit from PrEP. These are people who test negative for HIV, are sexually active and either have a sexual partner with HIV, have not used or do not use a condom consistently, and/or have been diagnosed with a sexually transmitted infection in the past six months. PrEP can also benefit people who inject drugs and share needles or have an injection partner with HIV.

But
less than 4 out of 10 people who could benefit were prescribed PrEP in 2022. That’s up from 2 out of 10 in 2019 — but we’re still a long way from accessing its full potential.

Use of PrEP is uneven. Among people who could benefit, 94% of white people have been prescribed PrEP, compared with just 24% of Hispanic/Latino people and 13% of Black people. These statistics are particularly troubling since Black and Hispanic people make up
70% of new HIV cases each year.

The gender split is also stark: In 2022, 41% of men who could benefit from PrEP received a prescription, compared to just 15% of women.

Barriers to PrEP access

One of the biggest barriers to PrEP is cost and insurance coverage. A 2022 report from the HIV+Hepatitis Policy Institute estimates that 55% of people taking PrEP are privately insured and 20% are uninsured. Without insurance, the cost of the drug can be more than $20,000 per year, not including required lab tests, which can be another $15,000.

But cost should not be a barrier. People without insurance can often get PrEP through copayment assistance programs or community-based clinics. Nationwide, 85,000 people get PrEP at community health centers.

Most people with insurance should be fully covered for PrEP medications plus the clinic visits and lab tests needed to get and keep the prescription. The Affordable Care Act requires most insurers to cover preventive care, including PrEP, without copayments. A 2019 U.S. Preventive Services Task Force (USPSTF) recommendation reinforced that PrEP should be covered without consumer costs, and in 2021, the U.S. Department of Labor clarified how the rules about free preventive care apply specifically to PrEP. Many states have also passed laws that ensure PrEP is available without costs to consumers.

Even with clear rules, many patients are still being charged for PrEP, according to Carl Schmid, executive director of the HIV+Hepatitis Policy Institute.

“One of the big pluses is that we now have coverage and $0 cost-sharing,” Schmid said. “The problem is it’s not always implemented. The insurers are still charging lots of people.”

A report commissioned by consumer representatives to the National Association of Insurance Commissioners (NAIC) showed that health plans often provide incomplete information about coverage of preventive services, including PrEP. Among six health plans evaluated, half did not list PrEP as a preventive service available without cost-sharing, and only one provided a comprehensive explanation of coverage for all aspects of PrEP.

Even as advocates fight for enforcement of the rules, the rules themselves may be in jeopardy. A 2020 lawsuit filed by a religiously affiliated business in Texas argued that the requirement to cover PrEP without cost-sharing violated its constitutional rights to religious freedom. In 2022, a federal judge agreed and questioned the validity of using USPSTF recommendations as the basis for the requirements.

While no changes to the rules are in effect yet, the case may go to the U.S. Supreme Court for an ultimate decision. Depending on that decision, insurers and employers may no longer be required to cover PrEP, though they could choose to.

Even today, insurers who adhere to the no-cost-sharing rules for PrEP often put up other barriers, such as prior authorization requirements. Requiring consumers to get insurance approval before the plan will pay for PrEP may be legal, but it violates the spirit of widely accessible preventive care.

Schmid explained that, as part of prior authorization processes, insurers may want to assess the consumer’s risk for HIV. But, he said, that’s between the patient and their healthcare provider, not the business of the insurance company.

“Our goal is to get PrEP to people who need it as easily as possible,” Schmid said. “If you want to be on PrEP, there’s a reason, and you should get it without all these insurance barriers.”

Ironically, he said that he frequently hears that it can be easier to get PrEP for people without insurance than with insurance because of those barriers.

The federal budget for fiscal year 2024 included nearly $600 million in funding for a comprehensive initiative called Ending the HIV Epidemic (EHE). Funds cover HIV prevention and testing, as well as treatment. Spread across hundreds of clinics throughout the country, it’s not a huge amount.

The HIV+Hepatitis Policy Institute report suggested that properly expanding outreach and navigation would cost more than $6 billion over 10 years, and would prevent nearly 75,000 person years of HIV and more than $2 billion in HIV treatment costs.

Instead of expanding funding, though, some members of the U.S. Congress are trying to eliminate the budget for EHE altogether — an initiative that advocates are fighting.

In addition to more funds, Schmid supports better enforcement of existing rules and expanded requirements for PrEP access regardless of insurance type, including Medicare. Other ways to improve access include analyzing claims to quantify (and reduce) health insurance barriers, requiring health plans to clearly communicate what consumers are entitled to and encouraging state-level rules and enforcement. Streamlined medical billing would also make it easier for healthcare providers to prescribe PrEP.

“PrEP is a commitment,” Schmid said. “You are taking a drug for something that you’re not sick [from].”

There’s a lot of room for federal and state policymakers to match that commitment.

Resources

Ready, Set, PrEP

This educational resource was created with support from Merck.

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Protecting Yourself or Your Partner from HIV



Slide 1

Protecting Yourself or Your Partner from HIV

How to talk to intimate partners about HIV

Slide 2

Major changes in midlife

Despite what people may think, many women over age 50 are interested in having sex. And midlife may mean new relationships and intimate partners. That means you need to protect yourself — and your sexual partners — from HIV.

1 out 3 women ages 50–64 are not in a committed relationship.

Slide 3

Recognizing the risks for HIV

It’s important to note that you can get an STI, including HIV, at any age.

Women over 50 are one of the fastest-growing groups with new HIV infections. Protecting yourself is essential.

Slide 4

Start with sharing

Before physical intimacy with a new partner, share your expectations.

Ask:

What are your safe-sex practices?

Have you been tested for STIs?

Treat previous partners or on-again, off-again partners like they’re new to you, too. Don’t let familiarity get in the way of safety.

Slide 5

Tips for talking

Explain your approach.

For example: “I get tested regularly, and I always use a condom.”

Being open about your safe-sex practices can help your partner feel connected instead of accused and encourage them to be open as well.

Slides 6/7

Defusing defensiveness

Conversations about safe sex or STIs may make your partner defensive. Some ways to make them feel comfortable:

  • Provide facts
  • Answer questions
  • Offer to visit a clinic together for STI testing
  • Get tested yourself

If the conversation is not going well, you can pause, walk away and follow up later — and think about whether this connection is worth keeping.

Slide 8

Safe sex is self-care

Use barrier methods like condoms and dental dams

Consider taking PrEP, a medicine that can prevent HIV infection

Ask about PEP if you have unprotected sex

Slide 9

Disclosing your status if you’re living with HIV

If you’re a woman living with HIV, conversations about sex can be challenging. Set your own timeline and practice what you’ll say.

In some states, the law requires that you disclose your HIV status before sexual encounters.

Slide 10

Satisfying and safe sexuality

Midlife can be full of new experiences and great connections. There might be awkward moments when discussing HIV, but they’re worth it for a satisfying and safe sex life now and in the years ahead.

This educational resource was created with support from Merck.



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Why Transgender Women Are at Higher Risk for HIV



When it comes to HIV, there’s positive news: Infection rates have been declining since 2017, and there’s hope for the development of an HIV vaccine. But there’s still much progress to be made in the transgender community, which is heavily affected by the disease.

A study done by the Centers for Disease Control and Prevention (CDC) highlights the unequal impact of HIV on the transgender community in the United States. HIV prevalence among transgender women is 14.1%, 3.2% for transgender men, and 9.2% for transgender people overall. In comparison, it’s estimated that the HIV rate for U.S. adults overall is less than 0.5%.

Worldwide, the numbers are even more startling: One analysis across 15 countries found that transgender women are 49 times more likely to have HIV compared to the general population.

Factors that increase the risk of HIV for transgender women

Why is the risk so high for transgender women?

“When we think about risk factors, we often think about individual-level risk,” said Asa Radix, M.D., Ph.D., MPH, senior director of research and education at Callen-Lorde Community Health Center in New York City, clinical professor at NYU Langone and a clinical ambassador for the CDC. “I think it’s really important to reframe that a little bit when we’re talking about HIV because this is often related to structural issues, not only individual-level issues.”

Structural inequalities are when policies keep certain groups of people from having equal access to resources. The statistics are overwhelming when it comes to the results of these inequalities for the transgender community in the U.S.:

  • Almost 3 out of 10 trans women live in poverty, making less than $14,000 a year
  • 3 out of 10 trans people say they have experienced homelessness in their lifetime
  • Almost half of transgender people have been sexually assaulted, according to the National Sexual Violence Resouce Center.
  • More than 1 in 4 trans people have lost a job due to bias, according to the National Center for Transgender Equality, and 3 out of 4 say they have experienced workplace discrimination.

The impact of these structural issues are even greater on Black and Hispanic people. One CDC study of seven U.S. cities found that 62% of Black trans women and 35% of Hispanic/Latina trans women surveyed had HIV—compared to 17% of white trans women.

“If you think about all of these social determinants of health, it’s very clear that if you are homeless without an education, without a possibility of employment or a house to live in, your risk for HIV is going to increase,” Radix said.

Read: Social Determinants of Health, Health Disparities and Health Equity >>

With fewer options for jobs, Radix explained, trans women may turn to sex work to make ends meet, skyrocketing their risk of HIV exposure. One study published in 2023 found that 41.8% of trans women reported having engaged in sex work, saying they were motivated to do so for “better pay” and being unable to “get a job due to gender discrimination.”

On top of structural inequalities, transgender women often experience high levels of family rejection, stigma and discrimination, which can lead to high levels of anxiety and depression. Radix explained that people may try to alleviate their anxiety and depression by engaging in risky behaviors, such as injection drug use or sharing needles. All of these challenges can result in poorer health outcomes by themselves, and when individual-level and structural inequalities are combined, the negative effects are compounded.

Access to healthcare is key to preventing HIV

With these higher risk factors, access to healthcare is extremely important. But 24 states currently restrict gender-affirming care in some way, lawmakers in at least 10 states are proposing to restrict transgender access to public services, and it’s legal in several states for healthcare providers to refuse to treat LGBTQ patients. All of this makes it difficult for trans people to find healthcare providers (HCPs) they can have open and honest dialogue with — or even disclose that they are trans in the first place.

The 2022 U.S. Trans Survey found that almost 1 in 4 respondents from the trans community did not see a doctor when they needed to in the year prior to the survey because they feared being mistreated. And of those who did see doctors, almost half reported having a bad experience because they were transgender, including being refused healthcare, being misgendered, or having a provider be verbally or physically abusive.

Read: What’s Sexual Orientation Got to Do With It? LGBTQ People Face Discrimination in Healthcare >>

Pre-exposure prophylaxis, also called PrEP, is medication that reduces the risk of getting HIV from sex by 99%. And it reduces HIV from needle exposure by 74%. But in order to be effective, it must be taken consistently. PrEP is only available with a prescription from an HCP. In a yet-to-be-published study Radix is working on, preliminary findings show that less than 15% of trans women are currently on PrEP. For trans men, the number drops to less than 6%.

“Lack of access to healthcare — which can be lack of insurance because they didn’t have a job, or feeling uncomfortable walking into a provider’s office — means that you don’t get that access to PrEP,” Radix said. “We know that PrEP is probably the most important intervention to reduce HIV, but we are not at a place right now where you can just walk into a store and get PrEP off the shelf.”

Even when transgender people do go to their healthcare provider, the burden may be on them to ask about PrEP rather than their provider initiating the conversation, which can be another roadblock.

Watch: No HIV for Me: Protect Yourself from HIV with PrEP and PEP >>

“Some providers get very uncomfortable asking trans people about their sexual health because they don’t often know what words to use, or they make many assumptions about who people’s sexual partners are,” Radix said. “We see that a lot with transmasculine folk. People just assume that their partners are going to be cisgender women [people whose gender identity matches their sex assigned at birth]. They don’t think to ask them if they are having sex with someone who has a penis, which would put them at higher risk [of HIV].”

While there have been a wealth of studies looking overall at the LGBTQ community and HIV, they often present an incomplete picture because of missing data or misconceptions about gender, sex and identity.

At their clinic, for example, Radix says they found an HIV prevalence of 2.8% among transmasculine people. But when they looked specifically at transgender men who have sex with cisgender men, the HIV infection rate jumped to 11%.

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