Less than 0.5 percent of adults in the U.S. have HIV (human immunodeficiency virus). But some groups are affected more than others. If you are transgender, you face a far higher risk. More than 9 percent of transgender people have HIV, according to a 2019 report from the Centers for Disease Control and Prevention (CDC). For transgender women, the odds are higher. At least 14 percent have HIV.
However, the true impact of HIV on the transgender community might be even greater. When the CDC took a survey of transgender women in seven major U.S. cities in 2019-2020, they found that 42 percent of those who responded had HIV.
Fortunately, HIV treatment has come a long way over the past few decades. People of all genders who know they have this virus can now take medication to lower it to the point that it’s undetectable in the bloodstream. That means you can lead a long, healthy life with HIV.
How to Protect Yourself
Practice safe sex
If you use condoms correctly every time you have sex, the risk of getting or transmitting HIV drops significantly. Pairing condoms with a prevention method called PrEP is even safer.
If your sex partner is HIV positive, you can still have safe sex. They would need to take their HIV medication as prescribed so that the virus remains undetectable in their bloodstream. That's in addition to condoms and PrEP.
Get tested regularly
Treatment is life-saving, but the first step is knowing that you’re HIV positive. The CDC recommends that anyone at above-average risk – which includes those who are transgender – get tested for HIV at least once a year.
Statistics show that many people in the transgender community already understand the importance of testing. The CDC survey of transgender women in major cities found that 96 percent had been tested for HIV at some point, and 82 percent had been tested within the previous 12 months.
In the past, you had to go to a doctor’s office, clinic, or lab facility to get tested for HIV. But that’s no longer the case. With self-tests, you now have the option to test yourself at home. Home tests, including the rapid ones that use a saliva sample instead of a blood sample, are very accurate if you’ve had HIV for a while. If you got it within the past few weeks or months, however, they might falsely say you don't have it.
PrEP is a type of medication that prevents HIV in people who don’t have it. It stands for pre-exposure prophylaxis.
PrEP might be right for you if:
- You have sex with people whose HIV status is unknown.
- You have sex with people whose HIV is not suppressed with medication.
- You have sex with people using injectable drugs.
- You are trying to get pregnant and have a partner with HIV.
When used as directed, PrEP is 99 percent effective in preventing HIV from sex and at least 74 percent effective in preventing it via injectable drugs. The downsides include having to take a pill every day and being required to see a doctor every 3 months for checkups and HIV testing. And as with any medication, there’s a chance you might have side effects. Possible side effects of PrEP include diarrhea, nausea, headache, fatigue, and stomach pain. Ask your doctor to help you weigh the pros and cons.
If you don’t want to take a daily pill, there is another option. Cabotegravir (Apretude) is an injectable PrEP medicine that only needs to be given by a health care worker every other month. It is approved for people weighing more than 77 pounds (35 kilograms) to lower your chances of getting HIV.
Learn about PEP
Unlike PrEP, which is designed to be taken regularly, PEP (post-exposure prophylaxis) is for emergency use only. If you had an encounter you aren’t sure about and are worried that you might have been exposed to HIV, starting PEP within 72 hours should prevent you from becoming infected.
If you’re HIV positive, start treatment right away.
If you have HIV, you can take a combo of drugs known as antiretroviral therapy (ART). Taking this medication every day should help keep you healthy for many years. The key is to start treatment as soon as possible and stick with it. People who are diagnosed at age 20 and start ART right away now have an average lifespan of 71. But if you’re diagnosed at the same young age and don’t take medication, you might only live to be 32.
Sticking with ART also protects others. As long as your viral load remains undetectable, you have almost no risk of transmitting HIV to a sex partner.
Why HIV Still Matters
While modern HIV treatments are excellent, it’s wise to try to prevent infection and find out as soon as possible if you’ve gotten it. That’s because if you catch it, you will likely need treatment for the rest of your life. If HIV is not caught and properly treated, it can lead to AIDS (acquired immunodeficiency syndrome).
AIDS damages the immune system so that it’s no longer strong enough to fight off other infections. As a result, people with AIDS often get “opportunistic infections,” which can be severe and fatal. People with advanced HIV or AIDS are prone to several kinds of opportunistic infections.
There isn’t much research available on whether receiving gender-affirming surgery or going through hormone therapy changes the risks of getting HIV. But HIV and AIDS can lower your immune system’s ability to fight infections, which could make getting surgery more complicated. However, studies show that if you have surgery while you’re in the early stages of HIV, there is almost no significant increase in risk compared to those who don’t have HIV.
A 2018 survey of transgender youths found if you receive gender-affirming services, you’re more likely to be aware of HIV prevention, suggesting that when medical gender needs are met, education and safety increase.