If you’re a sexually active cisgender or transgender woman, you’ve probably thought about the need to protect yourself from sexually transmitted infections (STIs). But have you ever specifically talked with a doctor about your HIV risk?
If the answer is no, you aren’t alone. A Kaiser Family Foundation survey published in 2021 showed that only 1 in 10 women reported talking about HIV-prevention medication with their doctor.
While HIV is more common in cisgender men, women can get it too, and transgender women are particularly at risk.
HIV used to be considered a death sentence, but it no longer is. With treatment, it is possible to prevent HIV from becoming AIDS, and people can live long, healthy lives with HIV.
What is HIV and who is most at risk?
HIV, which stands for human immunodeficiency virus, is a virus that weakens the immune system. If left untreated, it often develops into a disease known as AIDS (acquired immune deficiency syndrome). HIV is most often spread through unprotected sex or sharing needles.
Only four people have reportedly been cured of HIV: two via bone marrow transplant (an expensive and dangerous procedure) to treat blood cancer, and two whose immune systems seem to have eradicated the virus. For most people, there is no cure for HIV — though the infection can be treated and the virus suppressed so it is barely detectible in the body, does not cause symptoms and cannot be spread to others.
While men who have sex with men are most affected by HIV in the U.S., women can get it, too. According to the Centers for Disease Control and Prevention (CDC), more than 7,000 women were diagnosed with HIV in 2018, with Black women and other women of color, as well as transgender women, being disproportionately affected.
“In Seattle and King County the majority of people with HIV are men, but women are not an insignificant portion of people living with HIV,” says Dr. Shireesha Dhanireddy, medical director of UW Medicine’s Infectious Diseases Clinic and Madison Clinic at Harborview Medical Center, which provides HIV and AIDS care.
Women, especially cisgender women, are less at risk for HIV because of the types of sex they are more (and less) likely to engage in. Having anal sex without protection makes it easier for HIV to spread because the rectum has a thin lining that the virus can move through easily. While HIV can still be transmitted during vaginal sex, it is slightly less likely, and it is extremely rare for HIV to be transmitted during oral sex.
HIV can also be transmitted from needle sharing during injection drug use and from mother to baby during pregnancy or birth.
Is it possible to prevent HIV infection?
Like most STIs, HIV can be prevented by using external and internal condoms. It can also be prevented with medication.
Pre-exposure prophylaxis, called PrEP, is a medication that helps prevent HIV infection during sex and during injection drug use. It is very effective and well-tolerated, though some people experience mild side effects such as nausea, headache or fatigue.
PrEP is something you should take before potential HIV exposure. There is another medication, called post-exposure prophylaxis or PEP, that can be taken on an as-needed, emergency basis shortly after potential exposure, though it shouldn’t be used regularly.
One problem? Many women don’t know that PrEP and PEP exist.
“One issue is women are not often a group that’s targeted for prevention. There’s this idea of who gets HIV and that it’s not women, but that’s not true,” Dhanireddy explains.
There are additional barriers that keep people who need it from accessing PrEP and PEP (such as stigma around HIV), lack of medical insurance or other issues with accessing care, warranted distrust of the healthcare system (especially for trans women and women of color) and more.
Plus, if someone is struggling to get by, doesn’t have regular housing, is dealing with substance use or has other health concerns, PrEP or PEP may be low on their list of reasons to go to the doctor.
Part of increasing use of PrEP and PEP is making them work for each person’s individual needs, Dhanireddy says. For people who are at higher risk, taking a daily PrEP pill may be the best option, but for others at moderate or low risk, it’s possible to take the medication as needed before and after sex only.
Other future options, such as a long-acting injection and a vaginal ring, are in the works but not yet FDA-approved, Dhanireddy says.
“We will have more strategies and more options for people in the near future and specifically targeted around women,” she adds.
What does HIV testing involve? What if I test positive?
If you’re concerned about HIV or think you may be at risk, it’s important to talk with your doctor about it (and you may want to talk about it even if you don’t think you’re at risk, as the research we referenced earlier suggests).
It’s also important to talk with your doctor if you could have been exposed to HIV and have symptoms of infection, such as swollen lymph nodes, fever, rash and fatigue. But note that it’s also possible to get HIV and have no symptoms.
Getting tested for HIV is a simple process. There are rapid tests available that require only a finger prick and give you results within a few minutes.
If someone has been very recently exposed and there hasn’t been time for antibodies to HIV to build up in the blood, they may need a standard blood test in order to get an accurate result.
When someone tests positive for HIV, Dhanireddy likes to have a conversation with them to see what their understanding of HIV is and what questions and concerns they have. With women, this often involves talking about their concerns around transmitting the virus to a partner or to children in the future.
Knowing you have HIV can be overwhelming, but the good news is that it is treatable.
Can transmission be prevented? What about AIDS?
Decades ago, being diagnosed with HIV was considered a death sentence, with people having no way of stopping HIV from progressing to AIDS. Thanks to advocacy and medical advancements, that is no longer the case. Now, people with HIV can live long, fulfilling lives.
“By taking medications you keep the virus under control, keep your immune system strong and stay healthy,” Dhanireddy says.
These medications, which are called antiretroviral medications, not only prevent HIV from progressing to AIDS, but they also help prevent the infection from being transmitted to others — which means it’s totally doable to have HIV and have a normal life, including a normal romantic life.
Medications also make a safe pregnancy and birth possible for women and people assigned female at birth who want to have children. There are a few precautions to take before, during and after birth, though, such as sticking to your medication schedule, planning for a C-section, using formula instead of breastfeeding and possibly giving antiretroviral medications to your baby if your doctor recommends it.
It is also important to take medication so HIV infection doesn’t progress to AIDS. If that happens, the immune system gets badly damaged. Antiretrovirals can still help people whose HIV has turned into AIDS, but it’s better to start medication before that happens so one can stay healthy.
HIV medications need to be taken regularly in order to work properly, and they can cause side effects in some people. Sometimes, you may need to work with your doctor to find the medication that works best for you.
Antiretrovirals are so powerful, however, that they can all but put someone into remission — meaning that the amount of virus in someone’s blood isn’t high enough to be detected during a blood test.
Getting an HIV diagnosis isn’t easy, but it also isn’t the end of the world. Dhanireddy likes to put things in context.
“There are other chronic diseases that are not curable, like diabetes and high blood pressure, that you have to live with and manage. With diabetes you may have to take injections and monitor your blood sugar, and with HIV you take one to two pills a day,” she says.