Table of Contents
A Look at the Numbers
Over 35 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 primarily to affect gay men. However, as the years passed, women have emerged as another group hard hit by the HIV/AIDS epidemic. Globally, women living with HIV (HIV+) account for half of all people living with HIV, and in many countries, HIV+ women outnumber HIV+ men.
In the US: The proportion of HIV/AIDS cases among women in the US more than tripled from seven percent in 1985 to 22 percent in 2011. That means that about one in four Americans living with HIV is a woman. The good news is that, from 2008 to 2010, women represented a noticeably smaller percentage of new HIV infections (21 percent decrease) after more than ten years of steadily increasing numbers. Women currently account for one in five new HIV infections in the US.
HIV affects both younger and older women. In fact, the rate of HIV diagnoses in older women has been rising recently; in 2013, women aged 45 and older accounted for 37 percent of new HIV diagnoses -- more than twice the proportion of younger women 13 to 24 years old (14 percent).
In 2013, more than eight out of ten women living with HIV in the US were women of color. Among women of color, African-American women are especially affected. Although African-American adolescent and adult women made up only 13 percent of the US female population, they accounted for almost two-thirds of all new HIV infections among women. Latinas made up 17 percent of the US female population and accounted for 15 percent of all new HIV infections among women. For African-American women, the rate of HIV diagnosis was almost 20 times as high as the rate for white women in the US. For Latinas, it was almost four times as high as the rate for white women.
Globally: The World Health Organization (WHO) estimates that almost 18 million adults living with HIV are women. 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, in 26 of 31 countries with generalized epidemics of HIV/AIDS, fewer than half of young women in these countries have correct and thorough knowledge about HIV.
Transmission: 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. More than eight out of every ten women living with HIV in the US get the virus through sex with a man living with HIV. 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.
Is HIV Different for Men and Women?
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 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 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 family member
- The stigma associated with HIV
- Problems with substance abuse or addiction
- Lack of financial resources and/or social supports
- Mistrust of health care providers and/or the medical system
Treatment in Women Living With HIV: Effectiveness, Side Effects, and Drug Interactions
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 studies is now changing. For more information on how The Well Project is working to advance and improve research for women living with HIV, please visit our page on the Women's Research Initiative on HIV/AIDS.
The good news is that the existing research has found little difference in terms of the effectiveness of HIV treatment for women and men. Women living with HIV who begin treatment as recommended have been found to do as well as men living with HIV. Although treatment seems to work as well in women, in some cases, the side effects may differ:
Rashes: Researchers say that 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.
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 HIV infection increases a person's risk of weakening bones. This places both men and women living with HIV at increased risk of osteoporosis. However, the risk for bone weakness in women living with HIV is three times higher than it is for men living with HIV.
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.
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 impact the levels of birth control 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 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.
Gynecological Issues in Women Living With HIV
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 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 women living with HIV 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. Women living with HIV are more likely to be infected with HPV than HIV-negative women. Women living with HIV are also less likely to clear, or get rid of HPV, than HIV-negative women. Women living with HIV, especially those with advanced HIV disease (lower CD4 counts), are 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 women living with HIV 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 are a good way to check for HPV. An abnormal cervical screening test can indicate inflammation, infection, dysplasia, or cancer in the cervix.
The US Centers for Disease Control and Prevention (CDC) recommends that:
- women living with HIV have a complete gynecological examination, including a cervical screening test, when they are first diagnosed and when they first seek prenatal care
- women living with HIV have another cervical screening test six months later
- If both tests are normal (negative), yearly screening is recommended
- Women who have had dysplasia should receive a cervical screening test more often
For more information, see The Well Project's article, Caring for a Woman's Body: What Every Woman Should Know about the Care and Prevention of GYN Problems.
There are also three effective HPV vaccines. Since the introduction of the HPV vaccines in the US four years ago, the number of 14 to 19 year old girls infected with HPV has dropped by more than half. It is important for young people to get vaccinated before they have sex (before they have been exposed to HPV), since people who are already infected with HPV are not protected by the vaccines. For more information, see our article on HPV.
Pregnancy and HIV
With the advances in HIV care and treatment, many women living with HIV are living longer, healthier lives. As they think about the future, some of these women are deciding to have the babies they always wanted. Women living with HIV 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 The Well Project's article 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 (mother-to-child transmission). If the mother takes appropriate medical precautions, the rate of transmission can be reduced to fewer than five in 100 births. 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 women living with HIV are growing. It is important that you be aware of your risk for HIV and get tested if there is any possible reason to think you may have been exposed to 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 living with HIV 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 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.