AIDS is a medical diagnosis by a physician of a set of symptoms or conditions based on specific criteria established by the Centers for Disease Control and Prevention (CDC). These criteria include infection with human immunodeficiency virus (HIV) and either the presence of one or more defined AIDS indicator diseases or other indicators of a suppressed immune system based on certain blood tests (CD4 counts). The “opportunistic” diseases associated with AIDS occur following the depression of an individual’s immune system, allowing susceptibility to unusual infections or malignancies.
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AIDS, the end stage of HIV disease, is caused by the infection and spread of HIV within the body. A positive HIV test result alone does not mean that a person has AIDS, only that HIV infection has occurred. HIV destroys CD4 T blood cells that are crucial to the normal function of the human immune system. Most HIV-infected people carry the virus for years before the immune system is damaged enough for AIDS to develop. There is a direct correlation between the amount of HIV in the blood, the decline in CD4 T cell numbers, and the onset of AIDS.
Progression from initial HIV infection to AIDS may take 10 years or more, but varies greatly depending on many factors, includinga person’s health status and their health-related behaviors. Reducing the amount of virus in the body with anti-HIV drugs can slow down the rate at which HIV weakens and destroys the immune system.The natural history of HIV infection in adults is well documented in the medical literature. The impact of gender on the outcome of HIV infection is still being investigated. HIV appears to progress more rapidly inwomen than men and to present with a different array of opportunistic conditions. These factors may also be compounded by the tendency of women to receive less care and to present with more advanced disease.
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HIV TRANSMISSION
HIV can be transmitted through blood, semen (including pre-seminal fluid or “pre-cum”), vaginal fluid, or breast milk. The most common modes are: sexual intercourse (anal, vaginal, or oral sex) with an HIV-infected person; sharing needles, syringes, or injection equipment with an injecting drug user (IDU) infected with HIV; and from HIV-infected women to babies before or during birth, or through breast-feeding after birth. HIV can also be transmitted through transfusionsof infected blood or blood clotting factors, but routine screening of all donated blood since 1985 has made this risk extremely low. Some health care workers have become infected after being stuck with needles containing HIV-infected blood.
Transmission of HIV can be influenced by several factors, including characteristics of the HIV-infectedhost, the recipient, and the quantity and infectivity of the virus. Having a sexually transmitted disease (STD) can increase a person’s risk of becoming infected with HIV. In addition, if an HIV-infected person is also infected with another STD, that person is 3–5 times more likely to transmit HIV through sexual contact. HIV cannot be transmitted from casual (i.e., hugging or shaking hands) or surface (i.e., toilet seats) contact or from insect bites. Intact, healthy skin is an excellent barrier against HIV and other viruses and bacteria. In the United States in 2001, CDC estimated that 66% of adult/adolescent women reported with AIDS were infected through heterosexual exposure to HIV; of these, 24% were infected through sex with an IDU. Direct risks associated with drug injection (sharing needles) accounted for 32% of all cases among women. Additionally, women who use noninjection drugs (e.g., “crack” cocaine, methamphetamines) are at greater risk of acquiring HIV sexually, especially if they trade sex for drugs or money.
HIV TESTING
The only way to determine for sure whether someone is infected is to be tested for HIV infection. Many people who are infected with HIV do not have any symptoms for many years. The tests commonly used detect antibodies produced by the body to fight HIV. Most people will develop detectable antibodies within 3 months after infection, with the average being 25 days; in rare cases, it can take up to 6 months. Many women in care are not routinely screened for HIV. Since women of color are less likely to receive regular health care, they are also even less likely to be tested for HIV.
HIV testing and counseling provides an opportunity for women to find out whether they are infected and gain access to medical treatment that may help to delay disease progression. For infected pregnant women, it may provide a viable opportunity to access treatment to prevent transmission of HIV to their child. For women who are not infected, HIV counseling offers an opportunity to learn important prevention information.
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STATE OF THE HIV/AIDS EPIDEMIC
Worldwide, the World Health Organization estimates that the number of people living with HIV/AIDS is rapidly approaching 50 million, of whom almost 50%are women. In several regions of the world, the proportion of women exceeds 50%. The United Nations AIDS (UNAIDS) program estimates that 5 million new HIV infections occurred in 2001, or approximately 4,000 new cases per day. An estimated 3 million adults and children died of HIV/AIDS in 2001.
In the United States, the CDC estimates that approximately 800,000–900,000 people are living with HIV or AIDS, of whom 30% are women. Approximately 40,000 new HIV infections occur in the United States every year. Of the 240,000–270,000 women living with HIV disease in the United States, more than one half do not know their serostatus, meaning whether they are HIV-positive or HIV-negative, or that of their partner. Many will not be tested for HIV until they seek prenatal care, give birth, develop an AIDS-related illness, or until their partner develops an AIDS-related illness.
Through December 2001, 816,149 U.S. cases of AIDS had been reported to the CDC. Since 1985, the proportion of all AIDS cases reported each year among adult and adolescent women has more than tripled, from 7% in 1985 to 26% in 2001. The epidemic has continued to increase most dramatically among women of color. African American and Hispanic women together represent less than one fourth of all U.S. women, yet account for more than three fourths (78%) of AIDS cases reported to date among women. In 2001 alone, African American and Hispanic women represented an even greater proportion (80%) of cases reported in women.
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During the mid-to-late 1990s, advances in HIV treatment led to dramatic declines in AIDS deaths andslowed the progression from HIV to AIDS in the United States. As a result, more people are now living with AIDS in the United States than ever before. This growing population represents an increasing need for continued HIV prevention, care, and treatment services. Even as HIV/AIDS-related deaths among women continued to decrease in 1999, largely as a result of recent advances in HIV treatment, HIV/AIDS was the fifth leading cause of death among U.S. women aged 25–44, and the third leading cause of death among African American women in this same age group. HIV/AIDS-related deaths among women of color also have declined less rapidly than their white/Caucasian counterparts.
Despite the dramatic advances made in understanding the natural history of HIV disease and the developmentof effective antiretroviral therapies, the AIDS epidemic continues to grow with some disturbing trends. HIV/AIDS morbidity and mortality increasingly impact the poor, the disenfranchised, and the young, groups in which women are traditionally overrepresented.
PREVENTING HIV TRANSMISSION
Abstaining from engagement in any behavior that carries risk of acquiring HIV (e.g., sexual intercourse orusing and injecting drugs) is the most effective way to avoid HIV, but not always the most realistic. To minimize risk for those who choose to be sexually active, the CDC recommends the following: engage in sex that does not involve vaginal, anal, or oral sex; have intercourse with only one uninfected partner; and/or use latex condoms every time you have sex. For IDUs whocannot or will not stop injecting drugs, the following steps are recommended to reduce risk: never reuse or “share” syringes, water, or drug preparation equipment;only use syringes obtained from a reliable source (such as pharmacies or needle exchange programs); use a new, sterile syringe to prepare and inject drugs; if possible, use sterile water to prepare drugs; otherwise, use clean water from a reliable source (such as fresh tap water); use a new or disinfected container (“cooker”) and a new filter (“cotton”) to prepare drugs; clean the injection site prior to injection with a new alcohol swab; safely dispose of syringes after one use. If new, sterile syringes and other drug preparation and injection equipment are not available, then previously used equipment should be boiled in water or disinfected with bleach before reuse.
Medical therapy (ZDV—zidovudine, also known as AZT or Retrovir) is available to effectively reduce the hance of an HIV-infected pregnant woman passing HIV to her infant before, during, or after birth. In 1998, the U.S. Public Health Services released updated recommendations for offering antiretroviral therapy to HIV- positive pregnant women.
Programs focusing on reducing the transmission of HIV among women should include an increased emphasis on prevention and treatment services for young women and women of color; address the intersection of drug use and sexual HIV transmission; develop and widely disseminate effective female-controlled prevention methods; and better integrate prevention andtreatment services for women across the board, including the prevention and treatment of other STDs and substance abuse and access to antiretroviral therapy. More options are urgently needed for women who are unwilling or unable to negotiate condom use with a male partner.
CARE AND TREATMENT
Early medical treatment and a healthy lifestyle can help an individual with HIV stay well. Prompt medical care may delay the onset of AIDS and prevent some life-threatening conditions. A person who has learned that he/she is HIV-positive should see a doctor, even if he/she does not feel sick. Drugs are now available to treat HIV infection and to assist in maintaining health. Because they are often diagnosed later and generally have poorer access to care and medications, women tend to have higher viral loads and lower CD4 counts upon entering care. Even in care, the health status of HIV-positive women continues to compare poorly to that of their male counterparts.
Despite increased attention in recent years, HIV-positive women in care are less likely than men to receive the current standard of care, including regular visits with an experienced clinician, antiretroviral therapy, combination therapy, and/or a protease inhibitor(s). Receipt of care from a less experienced provider is a critical problem, since provider expertise and experience directly affect quality of care and disease progression. Women are less likely to know their viral load or CD4 count, and their medical charts are less likely to contain this information. All of these factors are further exacerbated for poor women and women of color.
Research and experience indicate the following set of conditions to facilitate HIV care for women. (a) Therisk for HIV must be perceived. (b) HIV status must be known and the need for and promise of medical care understood. (c) Caregiving responsibilities to children and family members must be met. (d) Basic life needs for food, shelter, and community must be met. (e) Treatment for other problems including substance abuse and mental health disorders must be ongoing. (f ) Transportationto appointments must be available. (g) Childcare must be available. (h) Financial means to pay for health care and medications must be available. (i) The patient must encounter medical personnel qualified to treat HIV infection in women. (j) HIV-positive mothers must encounter care that is “family-centered” and coordinated—care that addresses the impact of HIV and barriers to care for the family. (k) All prescribed medications must be available. (l) Informational, psychological, and emotional support from peers and care providers must be ongoing. At present, the approach to management of HIVdisease is the same for both women and men. The clinical course of HIV infection in women does not seem to differ significantly from that in men, with the exception of the associated gynecologic and obstetric conditions and issues.
Women may have lower HIV viral loads than men with an equivalent degree of immunosuppression,but do not tend to differ in overall survival or complication-free survival. As both women and men live longer with HIV disease and AIDS, general preventive strategies and health maintenance have become part of routine care. These include smoking cessation, control of hypertension, minimizing cardiovascular risk factors, and routine screening for malignancy (cervical, breast, colon).
SOCIAL/PSYCHOSOCIAL CHALLENGES
AND NEEDS
Many social/psychosocial issues, including homosexuality, drug use, mental illness, racism, homelessness, and poverty, are linked inextricably to the context of HIV/AIDS by association with the communities that it has heavily impacted, in addition to the clinical challenges of the disease itself and its toll on the health and well-being of those infected. For many women with HIV/AIDS, specific challenges and needs impact their ability to protect themselves from HIV and/or access care.
These are: (a) parenthood and caregiving, with approximately 62% of all HIV-positive women taking care of at least one child under age 20, with their first priority to their children; (b) lack of awareness of risk and serostatus; (c) discrimination due to HIV status, and racial discrimination for women of color; (d) poverty, with most HIV-positive women already poor before becoming infected and becoming poorer as their disease progresses; (e) psychological distress, including fear, depression, and anxiety about their serostatus, compounded by high incidences of poverty, discrimination, caregiving responsibilities, addiction, sexual abuse, and domestic violence; (f ) substance abuse of both injected and noninjected substances, a prominent problem among women at risk and with HIV disease, impacting health care utilization and outcomes; (g) comorbidities, with women of colorin particular having less exposure to health information, preventive health services, and primary care than men, and subsequently suffering higher rates of certain cancers, cardiovascular disease, hypertension, obesity, tuberculosis, and diabetes, further complicating HIV care; (h) STDs, with women of color, particularly African American women, having higher rates of chlamydia, syphilis, and gonorrhea than white women.