Table of Contents
- A Look at the Numbers
- Is HIV Different for Men and Women?
- HIV Treatment in Women
- Gynecological Issues in Women Living with HIV
- Pregnancy and HIV
- In Conclusion
More than 40 years have passed since the first diagnosis of AIDS (Acquired Immune Deficiency Syndrome) in the US. While there were a handful of women among the first cases, AIDS was thought to mostly affect gay men. However, as the years passed, women (The Well Project serves women across the gender spectrum. (More about gender identity)) have emerged as another group hard hit by the HIV epidemic.
Globally, women living with HIV account for half of all people living with HIV. In many countries, women living with HIV outnumber men living with HIV. Across the globe, transgender women (trans women; women of trans experience) are affected by HIV to a much greater degree than other groups. The proportion of transgender people living with HIV is estimated to be 49 times higher than that of people living with HIV in the general adult population.
In the US
While the number of new HIV cases among women in the US has declined since 2010, almost one in five new HIV diagnoses in 2018 were among women. African-American women are especially affected. African-American adolescent and adult women made up only 13 percent of the US female population and accounted for almost six of every ten new HIV cases among women in 2018. Latinas made up roughly 18 percent of the US female population and accounted for 18 percent of all new HIV cases among women. For African-American women, the rate of HIV diagnosis was 14 times that of white women in the US. For Latinas, it was three times that of white women.
Though not often talked about, US indigenous (American Indian/Alaskan Native) communities experience high rates of HIV. And while Asian/Pacific Islander communities may not be as heavily impacted by HIV, cultural factors may leave women in these communities vulnerable to acquiring HIV – or make it harder for them to connect to HIV care. For more information on these factors, see our fact sheet on HIV among US women of different races or ethnicities.
HIV affects both younger and older women. In fact, the rate of HIV diagnoses in older women has been rising recently; in 2018, women aged 45 and older accounted for 36 percent of new HIV diagnoses – more than twice the proportion of young women 13 to 24 years old (14 percent).
The World Health Organization (WHO) estimates that more than 18 million women were living with HIV in 2018. Although women account for approximately half of all people living with HIV worldwide, the percentage of women who are living with HIV varies widely among countries. Estimates suggest that one in three people living with HIV in the United Kingdom are women; almost four out of ten people living with HIV in India are women; and almost six in ten people living with HIV in sub-Saharan Africa are women. The Joint United Nations Programme on HIV/AIDS (UNAIDS) reports that only 21 percent of teen girls (ages 15 to 19) worldwide know enough about HIV to help them stay HIV-negative.
Transgender women: Across the globe, women of trans experience are affected by HIV to a much greater degree than other groups. This is true whether trans women are living in low-, middle-, or high-resource countries. For more information, see our fact sheet on Trans Women Living with HIV.
Older women: The number of older women living with HIV has been rising, not only because the rate of older women who have newly acquired HIV has increased, but because more women living with HIV are living longer, healthier lives and are aging with HIV. Older women deal with two stigmas – that of living with HIV, a disease spread through sexual contact or drug use; and that of being older. As a result, many older women are first diagnosed with HIV at a later stage of infection, when their immune systems are quite weakened.
Vaginal-penile sex (sex in which a person puts their penis in another person’s vagina) is the most common way of getting HIV (or mode of transmission) among women in the US. During vaginal-penile sex (often known as heterosexual sex), HIV is passed almost twice as easily from a person with a penis to someone with a vagina as the other way around. More than eight out of every ten women living with HIV in the US acquire HIV through sex with a man living with HIV who has a penis. Heterosexual sex is also the main source of HIV transmission for women in many other countries.
Sharing syringes for injecting drugs is another common mode of transmission.
Until recently, little research had been done on women and HIV. While many questions remain unanswered, and not all reasons for these differences are known, available information shows that HIV affects men and women differently in some ways:
- When women are first diagnosed, they tend to have lower viral loads (amount of HIV in the blood) compared to men who are newly diagnosed
- Women generally have lower CD4 cell counts than men with similar viral loads
- Women are most often diagnosed when pregnant, considering becoming pregnant, or hospitalized with acute (initial) illness
- Women are more likely than men to develop bacterial pneumonia
- Women have higher rates of herpes infection than men
- Women get thrush (a yeast infection) in their throats more often than men
- Men are much more likely than women to develop Kaposi's sarcoma or KS (a cancer-like disease caused by a herpes virus)
Women tend to be diagnosed with HIV later in their disease than men and fewer women than men are getting HIV treatment. Women may delay getting medical care and treatment and choose not to disclose their HIV status for several reasons, including:
- Limited access to health care due to lack of insurance and/or transportation
- Unstable housing
- Fear of violence in the home (intimate partner violence)
- Other responsibilities, such as childcare or caring for a sick family member
- The stigma associated with HIV
- Problems with substance abuse or addiction
- Lack of financial resources and/or social support
- Mistrust of health care providers and/or the medical system
- Taking care of everyone but themselves and not putting themselves first
Numerous studies have shown that, if a person living with HIV is taking HIV drugs and their viral load has reached undetectable levels (not enough HIV in their bloodstream for a test to measure), that person cannot transmit HIV to a sexual partner who is HIV-negative. This is true for men as well as women of all gender identities, but there is still more research needed into how this exciting development affects women in particular – especially when it comes to breastfeeding children, or the often unfair power dynamics women experience in their relationships. For more information, please see our fact sheet Undetectable Equals Untransmittable: Building Hope and Ending HIV Stigma.
HIV treatment studies (clinical trials) have traditionally included very few women. As a result, most information on the effectiveness and safety of HIV drugs comes from research done in men. This under-representation of women in studies is slowly beginning to change. For more information on how The Well Project is working to improve research for women living with HIV, please visit our page on the Women's Research Initiative on HIV/AIDS.
Research has found little difference in the effectiveness of HIV treatment for women and men. Women living with HIV who begin treatment as recommended do as well as men living with HIV. Although treatment seems to work as well in women as in men, the side effects may differ:
Rashes: Women living with HIV are more likely than men to experience skin rashes from HIV drugs.
Liver problems: Women are more likely to experience liver problems as a side effect of certain HIV drugs. In fact, women with a CD4 count above 250 are warned against starting a drug combination with Viramune (nevirapine) because of the risk of dangerous liver problems. (This medicine is rarely used anymore in the US.)
Body shape changes: Some studies have found that women living with HIV experience different types of body shape changes than men. Women may experience more fat gain in their breasts and waists.
Weak bones: It is known that women in general are at increased risk of developing osteoporosis (weak bones) after menopause, but studies have also shown that living with HIV increases a person’s risk of weaker bones. This means both men and women living with HIV are at higher risk of osteoporosis.
Differences in side effects between men and women may be due to interactions between HIV treatment and certain hormones. They may also be the result of women's smaller physical size. Standard doses of drugs are usually based on research in men.
Women living with HIV do need to be careful about drug interactions. Certain HIV drugs can affect the levels of other drugs in the body. For example, several HIV drugs can affect the levels of contraceptive pills and change how effective those pills are at preventing pregnancy.
It is important for women living with HIV to be treated by health care providers who have experience in treating women living with HIV. Tell your health care provider about all your medical conditions and any medications you are taking. If you experience side effects from your HIV drugs, be sure to ask your health care provider for help.
Certain gynecological (GYN) conditions are more common, more serious, and/or more difficult to treat in women living with HIV than in HIV-negative women:
- Some vaginal infections and inflammation, including yeast infections and bacterial vaginosis
- Common sexually transmitted infections or diseases (STIs or STDs), such as gonorrhea, chlamydia, and trichomoniasis
- Genital herpes
- Pelvic inflammatory disease (PID)
Although little conclusive research is available on HIV and menstruation (periods), many women living with HIV report abnormal menstrual periods. Some bleed much more than usual while others stop menstruating altogether.
Human papillomavirus (HPV) is a sexually transmitted infection that causes 99 percent of cervical cancer and can also cause genital warts. Women living with HIV are more likely to have HPV than women who are not living with HIV. Women living with HIV are also less likely to clear HPV (have their body get rid of the virus by itself) than HIV-negative women.
Women living with HIV, especially those with advanced HIV disease (lower CD4 counts), are more likely to develop dysplasia as a result of HPV. Dysplasia means abnormal cells on the cervix (opening of the womb). It is often more severe and difficult to treat in women living with HIV who have a cervix than in HIV-negative women. Untreated dysplasia can lead to cervical cancer, a life-threatening illness.
It is important to find HPV early and get treatment to prevent health problems. Regular cervical screening tests (Pap smears) are a good way to check for HPV. An abnormal cervical screening test can indicate inflammation, infection, dysplasia, or cancer in the cervix. There are also effective HPV vaccines. For more information, see our fact sheets on HPV and Gynecologic Care and HIV.
With the advances in HIV care and treatment, many women are living longer, healthier lives with HIV. As they think about the future, some of them are deciding to have the babies they always wanted. Women living with HIV who are able to become pregnant and want to do so can discuss their plans with a health care provider who is very experienced in treating women with HIV. For more information, see our fact sheet on Getting Pregnant.
The good news is that advances in HIV treatment have also greatly reduced the chances that a mother will pass HIV on to her child (vertical transmission, also called mother-to-child transmission). If the mother takes appropriate medical precautions, the rate of transmission can be reduced to less than 1 percent of births. In addition, studies in the US have shown that being pregnant will not make HIV progress faster in the mother. For more information, see our fact sheet on Pregnancy, Birth, and HIV.
The number of women living with HIV is growing. If you are not living with HIV, it is important that you get tested regularly and do your best to be aware of your risk for acquiring HIV. In many countries, including the US, testing for HIV is part of routine health screening and preventive care.
If you test negative, you can take steps to stay that way. If you test positive, you can take steps to stay healthy and prevent passing the virus on to others, including during pregnancy. And while there is no cure yet, many women are living longer and stronger lives with HIV thanks to effective care and treatment.
More research is needed to determine how HIV progresses in women and how HIV drugs affect women’s bodies. However, it does seem that HIV drugs benefit women as much as men. By taking advantage of good health care and treatment as soon as you can, you greatly increase your chances of living a longer and healthier life for you and your loved ones.