In Spanish (En Español)
Updated May 2012
Over 25 years have passed since the first diagnosis of AIDS (Acquired Immune Deficiency Syndrome) in America. While there were a handful of women among the first cases, AIDS was thought primarily to affect gay men. However, as the years passed, women have emerged as another group hard hit by the AIDS epidemic. In many countries, women living with HIV (HIV+) outnumber HIV+ men.
The proportion of HIV/AIDS cases among women in the US has more than tripled from seven percent in 1985 to an alarming 24 percent in 2009. That means that about one in four Americans living with HIV is a woman.
HIV affects both younger and older women. In fact, the rate of HIV diagnoses in older women has been rising recently; in 2009, people aged 45 and older accounted for 32 percent of new HIV diagnoses.
In 2010, 82 percent of all HIV+ women in the United States were women of color. Among women of color, African-American women are especially affected. Although African-American adolescent and adult women made up only 12 percent of the US female population, they accounted for 64 percent of all women living with HIV. Latinas made up 14 percent of the population and accounted for 16 percent of all HIV+ women. For African-American women, the rate of HIV diagnosis was almost 20 times as high as the rate for whites. For Latinas, it was almost five times as high as the rate for white women.
Heterosexual sex (sex between a male and female) is the most common way of getting HIV (or mode of transmission) among women in the US. During heterosexual sex, HIV is passed almost twice as easily from men to women as from women to men. Nearly three quarters of HIV+ women get the virus through sex with an HIV+ man. Heterosexual sex is also the main source of HIV transmission for women in many other countries in Africa, South America, and Western Europe. Sharing HIV-contaminated syringes for injecting drugs is another common mode of transmission.
Until recent years, little research had been done on women and HIV. While many questions remain unanswered, 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 more likely than men to develop bacterial pneumonia
- Women have higher rates of herpes infections than men
- Women get thrush (a yeast infection) in their throats more often than men
- Men are eight times more likely than women to develop
Kaposi's sarcoma or KS (a cancer-like disease caused by a herpes
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 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 ( domestic violence)
- Other responsibilities such as child care or caring for a sick partner
- The stigma associated with HIV
- Active substance abuse
- Lack of financial resources and/or social supports
- Mistrust of health care providers and/or the medical system
HIV treatment studies ( clinical trials) have traditionally included very small numbers of 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 trials has only recently begun to change. [For more information on how The Well Project is working to advance and improve research for HIV+ women, please visit our site on the Women's Research Initiative on HIV/AIDS (WRI).]
The good news is that the existing research has found little difference in terms of the effectiveness of HIV treatment for women and men. HIV+ women who begin treatment as recommended have been found to do as well as HIV+ men. Although treatment seems to work as well in women, in some cases, the side effects may differ:
- Rashes: Researchers say that HIV+ women are more likely than men to experience skin rashes from HIV medications.
- Liver problems: Women are more likely to experience liver problems as a medication side effect. 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.
- Body shape changes: Some studies have found that HIV+ women 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 HIV infection increases a person’s risk of weakening bones. This places both HIV+ men and women at increased risk of osteoporosis. However, HIV+ women’s risk for bone weakness is three times higher than HIV+ men’s.
Differences in side effects between men and women may be due to interactions between HIV therapy and female hormones. It may also be the result of women's smaller physical size. Standard doses of drugs are usually based upon research done mostly in men. However, there are some drugs for which weight-based dosing is recommended.
HIV+ women 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 impact the levels of birth control pills and change how effective those pills are at preventing pregnancy.
It is important for HIV+ women to be treated by health care providers with experience treating women 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 HIV+ women than HIV-negative women:
- Some vaginal infections, including yeast infections and bacterial vaginosis
- Common sexually transmitted diseases (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 HIV+ women report abnormal menstrual periods. Some have excessive bleeding while others stop menstruating altogether.
Human papillomavirus (HPV) is an STD that causes 99 percent of cervical cancer and can also cause genital warts. HIV+ women are more likely to be infected with HPV than HIV-negative women. HIV+ women, especially women with advanced HIV disease, are also more likely to develop dysplasia (abnormal cervical cells) as a result of HPV.
Dysplasia is a condition of abnormal cells on the cervix (the opening of the
womb). It is often more severe and difficult to treat in HIV+ women than in
HIV-negative women. Untreated dysplasia can lead to
cervical cancer, a life-threatening illness.
It is very important for HIV+ women to have regular Pap smears. A Pap smear is a screening test your health care provider does to check for changes in the cervix. An abnormal Pap smear can indicate inflammation, infection, dysplasia, or cancer.
HIV+ women are ten times more likely to have abnormal Pap smears than HIV-negative women. These abnormal Pap smears are usually linked to low CD4 cell counts and HPV. Girls and women who are 12 - 26 years old should talk to their health care providers about whether they should get the HPV vaccine.
The Centers for Disease Control and Prevention (CDC) recommends that:
- HIV+ women have a complete gynecological examination, including a Pap smear, when they are first diagnosed and when they first seek prenatal care
- HIV+ women have another Pap six months later
- If both tests are normal (negative), yearly screening is recommended
- Women who have had dysplasia should receive a Pap smear more often and may return to getting annual Pap smears if they have had two normal exams in a row
For more information, see TWP’s Caring for a Woman’s Body: What Every Woman Should Know about the Care and Prevention of GYN Problems.
With the advances in HIV care and treatment, many HIV+ women are living
longer, healthier lives. As they think about the future, some of these women
are deciding to have the babies they always wanted. HIV+ women who want to be
come pregnant should discuss their plans with a health care provider who
is very experienced in treating women with HIV. For more information, see our
Getting Pregnant info sheet.
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 (mother-to-child transmission). If the mother takes appropriate medical precautions, the rate of transmission can be reduced from 25 percent to below 2 percent. In addition, studies done in the US have shown that being pregnant will not make HIV progress faster in the mother. For more information on pregnancy and HIV, click here.
The numbers of HIV+ women are growing. This means that all women should be aware of the risk and be tested if there is any possible reason to think they may have been exposed to HIV. If you test negative, you can take steps to stay that way.
If you test positive, you can take steps to prevent passing the virus on to others, including during pregnancy. And while there is no cure yet, many HIV+ women are living longer and stronger lives 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 the HIV drugs can 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.