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Florida: HIV/AIDS, 2 Units

Nancy Evans, BS

This course meets the HIV/AIDS continuing education requirement for healthcare workers in the state of Florida.

The annual incidence rate of HIV/AIDS in Florida is more than twice the national average. In 2004 Florida reported 5,816 cases of AIDS (Florida Department of Health, 2004). AIDS is increasing among Florida's minority heterosexual populations, particularly in immigrant and rural underserved communities, where poverty, cultural differences, and language barriers combine to hinder prevention efforts.

Blacks account for more than half of Florida's HIV-positive population and nearly half of the AIDS cases, even though they comprise only 14 percent of the state's population. AIDS is the leading cause of death for black men and women between the ages of 25 and 44. In 2004 blacks accounted for 78 percent of HIV/AIDS deaths in Florida (Florida Department of Health, 2006).

The incidence of pediatric AIDS in Florida has decreased steadily since 1994, when zidovudine (ZDV) treatment of HIV-infected pregnant women began. However, the percentage of new AIDS cases in children ages 6 to 12 and older has increased since 1990, which may be the result of antiretroviral therapies that delay the onset of AIDS.

The Targeted Outreach for Pregnant Women Act (TOPWA), established in 1998 by Florida statute 381.0045, requires that healthcare providers counsel and offer HIV testing to all pregnant women on their initial prenatal visit and again at 28 to 32 weeks' gestation. The TOPWA program increased poor women's access to prenatal care, including HIV testing and antiviral therapy, reducing the number of babies born with HIV infection. Nevertheless, the black population is disproportionately affected, accounting for 80% of pediatric AIDS cases diagnosed through 2003 (Florida Department of Health, 2006).

Seniors (age 50 and older) comprise one of the fastest growing segments of the HIV/AIDS population in Florida. Almost two-thirds of all Florida senior AIDS cases reported in 2004 came from just three counties: Miami-Dade, Broward, and Palm Beach. Misperceptions and stereotypes about aging and about HIV/AIDS have put seniors at risk for transmission.

Many seniors are sexually active well into their seventies and eighties, a fact sometimes overlooked by physicians and other health professionals. This oversight means healthcare workers may fail to ask patients about possible high-risk behaviors such as unprotected sex, or to offer voluntary HIV testing.

Because pregnancy is no longer a concern, most sexually active older couples do not use condoms. Unless the couple is monogamous, this increases the risk of infection with HIV or other sexually transmitted diseases from multiple sexual partners. Heterosexual black and Hispanic women over 60 comprise one of the fastest growing risk groups for HIV in South Florida.

Since the marketing launch of Viagra and other drugs for erectile dysfunction in the late 1990s, rates of HIV/AIDS and gonorrhea have increased more rapidly in middle-aged and older heterosexual adults than in people under age 40. Nearly 85 percent of the cases were male (Karlovsky et al., 2004).

Unprotected sexual activity is not the only risk factor among seniors. To control the rising costs of medications, such as insulin, some seniors share needles for insulin and other prescription drugs.

Seniors themselves may consider HIV/AIDS a young person's disease, and thus misinterpret the early symptoms of HIV (eg, fatigue, weight loss, forgetfulness) as just part of the aging process. As a result, many seniors are diagnosed only in late stages of the disease—or not at all.

To stem the tide of HIV/AIDS among seniors in South Florida, Seniors HIV Intervention Project (SHIP) recruits and trains older adults to present educational workshops to peers and community groups about the risks and symptoms of HIV infection. Working in Broward, Palm Beach, and Miami-Dade counties, SHIP links HIV-positive seniors to care and treatment services.

WHAT CAUSES HIV INFECTION?

AIDS is caused by the human immunodeficiency virus (HIV). By attacking the immune system, HIV makes the body vulnerable to a number of opportunistic infections caused by viruses, bacteria, and yeasts that would pose no threat to a person with a normal immune system. With a weakened immune system, however, these infections are life-threatening.

Varying levels and concentrations of HIV have been found in most bodily fluids of infected persons, including blood, semen, saliva, tears, breast milk, and vaginal and cervical secretions. However, only blood, semen, breast milk, and vaginal and cervical secretions have been proven to transmit HIV infection.

Although the mechanisms of HIV and the way it affects the immune system are not fully understood, the primary event is the entrance of HIV into the body's CD4+ cells, a type of white blood cell that initiates immune responses to various infections. Once inside the CD4+ cell, the virus replicates and spreads to other CD4+ cells, which, in turn, begin to replicate.

As the virus spreads to other white blood cells, it steadily deactivates the immune system, leading to dysfunction of various organ systems, including the endocrine, gastrointestinal, and nervous systems.

CO-EXISTING INFECTIONS IN THE HIV POPULATION

People who are HIV-positive often have other sexually transmitted diseases (STDs) such as syphilis, gonorrhea, herpes, and chlamydia. Research indicates that other STDs increase the risk of HIV transmission, and the immune suppression caused by HIV facilitates infection with other STDs, creating a destructive synergy.

Genital herpes (HSV-2) appears to be a major risk factor for acquiring HIV infection, increasing the risk more than three-fold. According to the CDC, most persons with HSV-2 have not been diagnosed. Many of them have mild or unrecognized infections but shed virus intermittently in the genital tract. These are the persons most likely to transmit the infection.

The most common and most deadly infection for HIV-positive individuals is tuberculosis (TB). According to the CDC, TB is the cause of death for 1 of every 3 people with AIDS worldwide. The spread of HIV has helped fuel the TB epidemic. According to UN AIDS, one-third of the increase in TB cases over the past five years can be attributed to the HIV epidemic (UN AIDS, 2005). The CDC recommends that all people infected with HIV be tested for TB, and, if infected, complete preventive tuberculosis therapy as soon as possible.

People who are HIV-positive may also be infected with hepatitis C (HCV), one of the leading causes of chronic liver disease in the United States. The CDC estimates that approximately one-quarter of HIV-positive people in the United States are also infected with HCV.

The CDC recommends that individuals co-infected with HIV and HCV be advised to avoid drinking alcohol heavily, and if possible avoid alcohol altogether because of the potential for liver damage. Co-infected clients should also consult with their health professional before taking any new medications—including over-the-counter (OTC), alternative/complementary, or herbal medicines—because of their possible effects on the liver. Those receiving HAART may also be at risk for HAART-associated liver toxicity and should be carefully monitored.

HIV TESTING

Until 2002, testing for HIV antibodies relied on an enzyme-linked immunosorbent assay (ELISA) of blood. Now, however, four rapid HIV tests have been approved by the FDA, all of which are interpreted visually. Two of the tests are approved for use at in care settings outside a clinical laboratory.

1. OraQuick Rapid HIV-1/HIV-2 Antibody Test, which detects HIV-antibodies in blood in only 20 minutes. A newer version, OraQuick Advance, approved in 2004, detects both HIV-1 and HIV-2 in oral fluid.
2. Uni-Gold Recombigen HIV Test, which detects HIV-1 antibodies in whole blood, serum and plasma, and results take from 10 to 12 minutes.
3. Reveal G2 Rapid HIV-1 Antibody Test, which detects HIV antibodies in serum or plasma. Although the test takes only 3 minutes to run, it is categorized as a moderately complex test and is usually done in a clinical laboratory.
4. Multispot HIV-1/HIV2 Rapid Test, uses fresh or frozen serum and plasma to detect HIV-1 and HIV-2, and distinguish one from the other. Results are available in 20 minutes. Also a moderately complex test, it is usually done in a clinical laboratory. (Greenwald et al., 2006)

Until these rapid tests became available, many people being tested in public clinics did not return to get their test results. Making results available during the testing appointment means that people can take precautions immediately to prevent transmission to their sexual partners. In addition, the oral fluid test offers another option for those people who may fear a blood test. All positive rapid HIV tests require repeat testing for confirmation.

Miami-Dade County has the highest number of HIV/AIDS cases in Florida. In an effort to slow the spread of this disease, in April 2006 South Florida's Jackson Memorial Hospital began offering routine voluntary rapid HIV testing to emergency room patients. This special program aims to identify people with the virus so they can be treated and so they can take steps to protect their spouse or partner. The program is staffed by full-time HIV counselors.

HIV Antibody Test Results

HIV test results can be one of three types: negative, positive, or indeterminate. A person may test negative for HIV antibodies even though recently infected. As stated earlier, newly infected persons may have high levels of the virus in their blood, making them highly infectious even though test results are negative.

NEGATIVE TEST RESULTS

If the test result is negative, it means either (1) the person is not infected with the virus, or (2) the person became infected recently and antibodies have not yet appeared. A person who tests negative for HIV but remains concerned about a possible recent infection should test again in 3 to 6 months and practice safer behaviors in the meantime. If risky behavior continues, infection may still occur.

POSITIVE TEST RESULTS

A positive test result shows the presence of HIV antibodies, which means that:

• The person is infected with HIV
• The person can transmit the virus to others through unsafe sexual practices, sharing contaminated injection equipment, and/or breastfeeding
• The person is infected for life

INCONCLUSIVE TEST RESULTS

Occasionally a rapid test or an enzyme immunoassay (EIA) test will show an "indeterminate" or "inconclusive" test result. This may mean that the person is recently infected and is developing antibodies. Indeterminate test results can also be caused by other factors, including but not limited to pregnancy, autoimmune diseases, blood transfusions, recent influenza vaccinations, or organ transplants.

People receiving indeterminate HIV test results should retest, using a blood specimen collected four weeks after the initial test. Retesting is recommended even if HIV infection is extremely unlikely. Research has shown that only about 20 percent of people with indeterminate test results go on to become positive. Only rarely do people remain indeterminate throughout their lives.

Home Testing Kits

Tests are now available for self-testing of HIV serostatus. However, Home Access Express HIV-1 Test System is the only FDA-approved home test kit currently on the market, although a number of unapproved kits are marketed on the Internet. This product is really an in-home sample collection system rather than a test with readily visible results. The person who wants to test at home pricks a finger and collects blood spots on special paper. The paper is mailed to a certified clinical laboratory with a confidential and anonymous personal identification number (PIN), using a standard ELISA process.

If the ELISA test is positive, the results must be confirmed by a Western blot test. The person tested obtains the results by calling a toll-free telephone and using an assigned PIN. Post-test counseling is available by telephone for everyone tested, whether the results are positive or negative.

Home testing is controversial, primarily because of the need for counseling. The FDA has expressed concern that people who have not been appropriately counseled by experienced staff in a culturally competent way before they receive the news that they are HIV-positive may commit suicide. Counseling needs to help reduce anxiety and risk-taking behavior as well as link individuals to services.

AIDS DIAGNOSIS

The path between infection with HIV and the development of full-blown AIDS can be steep or gradual and may take as long as a decade or more. The advent of more effective antiretroviral drugs for treating HIV has decreased the number of people with infection, malignancy, or a low enough CD4 count to classify them as having AIDS. Thus the Social Security Administration and most social service agencies determine eligibility for AIDS benefits based on functional assessment of the individual.

MODES OF TRANSMISSION

Transmission of HIV occurs primarily through sexual contact with an infected person. This includes anal, oral, and vaginal contact. The risk of transmission depends on sexual practices and whether latex condoms are used. Receptive anal contact without a latex condom carries the greatest risk.

Transmission also occurs through injection drug use with contaminated needles or syringes, and through transfusions of infected blood or blood clotting factors. Transmission through transfusion is much less common today in the United States and other countries where blood is screened for HIV antibodies.

Healthcare workers may be infected with HIV through needle sticks or direct contact with HIV-infected blood—for example, through a break in the skin or through the eyes or the mucosal lining of the nose. Of all adults reported with AIDS in the United States through December 2002, only 5.1% were healthcare workers, according to CDC.

Myths and misinformation abound about HIV/AIDS transmission. According to CDC, however, HIV is not transmitted by casual contact. This includes hugging, other nonsexual touching, and the shared handling of objects. Insects do not carry HIV, nor is the virus transmitted through air or water. Once outside the human body, HIV has a very short lifespan, which makes most medical procedures and caregiving activities safe if standard infection control procedures are followed.

INFECTION CONTROL PROCEDURES

Healthcare workers can prevent transmission of HIV/AIDS by meticulous adherence to the Standard Precautions recommended by CDC for the care of all patients and mandated by the Occupational Safety and Health Administration (OSHA). Both Standard Precautions and Universal Precautions are widely available to healthcare workers through their agencies and through the Internet.

PREVENTION

HIV/AIDS is preventable. For example, screening of blood and blood products for the HIV virus has reduced the risk of HIV transmission with transfusion to 1:1,000,000. Mother-to-baby transmission has dropped by two-thirds (CDC, 2006). Following Universal Precautions in healthcare has unquestionably prevented thousands, if not millions, of cases of HIV/AIDS in the United States. But, because the virus is transmitted through behaviors that many people find pleasurable—sexual activity and injection-drug use—prevention is difficult. Despite prevention strategies, the annual number of new infections in the United States has held steady at 40,000 since the early 1990s.

In early 2006, CDC announced new prevention initiatives with the overarching goal to "reduce the number of new HIV infections in the U.S. from an estimated 40,000 to 20,000 per year, focusing particularly on eliminating racial and ethnic disparities in new HIV infections."

Strategies to reach that goal include:

1. Make voluntary testing a routine part of medical care for all U.S. residents between the ages of 13 and 64.
2. Implement new models for diagnosing HIV infection, including rapid testing in high-HIV prevalence areas such as correctional facilities.
3. Prevent new infections by working with persons diagnosed with HIV, screening for risk behaviors, communicating prevention messages, discussing sexual and drug-use behaviors, and offering positive reinforcement for changes to safer behaviors.
4. Further decreasing perinatal HIV transmission by promoting voluntary prenatal testing, rapid testing during labor, delivery and postpartum for women with unknown HIV status and ensuring appropriate antiretroviral treatment and follow-up for HIV-positive women and their infants.

Prevention of HIV begins with education and counseling about sexual practices and injection-drug use. People unable to "just say no" need basic, practical, how-to information.

Safer sex practices include:

• Abstinence from sexual contact
• Mutual monogamy
• Correct use of latex condoms for all sexual intercourse (anal, oral, and vaginal)

Both women and men may need instruction in the correct use of condoms:

• Use a new latex condom for each act of intercourse.
• Leave space at the tip of the condom as a receptacle for semen and to decrease the risk of condom breakage.
• Hold on to the base of the condom to prevent slippage when withdrawing the penis after ejaculation.
• Do not attempt intercourse with a condom if the penis is only partly erect.

Prevention of HIV/AIDS should be part of a general program of sexually transmitted disease (STD) prevention because other preventable STDs, most of which are curable, have also reached epidemic proportions, particularly among sexually active young people. For example, the number of syphilis cases in Chicago climbed 41% from 2004 to 2005. Nearly three-fourths of the cases were men who have sex with men (MSM) (Chicago Department of Public Health, 2006).

Oral sex and anal sex appear to be increasing among teens, perhaps due to a misperception that the practices are safer than vaginal intercourse. However, both oral and anal sex can result in the transmission of gonorrhea and chlamydia as well as HIV (Johnson, Ghanem & Erbelding, 2006). Gonorrhea, syphilis, chlamydia, genital herpes (HSV-2) and human papillomavirus (HPV-16) increase susceptibility to HIV infection and actually make HIV more infectious by increasing viral shedding.

A rare and virulent strain of chlamydia appears to be spreading in the U.S., primarily among MSM. More common to Africa and Southeast Asia, the strain is called lymphogranuloma venereum chlamydia (LGV), and it can cause genital ulcers, swollen lymph glands in the groin, flu-like symptoms, and gastrointestinal distress. Rectal symptoms among MSM, including bleeding of the rectum and colon, likely result from unprotected anal intercourse. These lesions increase the risk of transmitting or contracting HIV or other bloodborne diseases (Kaiser Daily HIV/AIDS Report, 2006).

Screening and treatment for STDs helps reduce HIV transmission by decreasing viral shedding and reducing the concentration of the virus. Ultimately, STD treatment reduces the spread of HIV within communities. The CDC's Division of Sexually Transmitted Diseases (http://www.cdc.gov/std) has a variety of initiatives for prevention.

Researchers in San Francisco (Morin, 2002), concerned with a new rise in HIV incidence over each successive quarter of 2000, held focus groups to explore the reasons for this trend. These researchers identified the following factors as contributing to HIV transmission:

• Denial of risk, especially among adolescents
• Sense of inevitability about getting HIV infection
• Commodification of HIV (opportunity to get social services, housing assistance), especially among the poor
• Loneliness and low self-esteem
• Drug use, including methamphetamines

These factors had not changed markedly for several years. However, several phenomena that had changed in recent years and might be contributing to the increased incidence of HIV:

• Decreased perception of HIV as a health threat among the uninfected population
• Decreased communication, either with friends or through the media, about HIV
• A gradual shift in community norms about sex, including peer pressure to be unsafe, and a celebration of "barebacking"

The focus groups endorsed advertisements that emphasized friends talking with friends about safer sex, provided facts on the rising rates of HIV in San Francisco, and explained that HIV still had extremely negative health consequences.

Women who have sex with women (WSW) need to take precautions during oral sex, even though female-to-female transmission appears to be rare. According to the CDC, "vaginal secretions and menstrual blood are potentially infectious and mucous-membrane exposure (eg, oral, vaginal) exposure to these secretions have the potential to lead to HIV infection" (CDC, 2003). Precautionary measures include:

• Using condoms consistently and correctly each and every time for sexual contact with men or when using sex toys. Sex toys should not be shared.
• Using natural-rubber latex sheets, dental dams, cut-open condoms, or plastic wrap during oral sex. However, no barrier methods for use during oral sex have been shown to be effective by the FDA.
• Knowing your own and your partner's HIV status. This can help uninfected women reduce their risk of becoming infected and assist those who are infected to get early treatment and avoid transmitting the virus to others.

Injection-drug users who refuse treatment or who have no treatment programs available to them need instructions about precautions: Do not exchange needles or other paraphernalia. If sterile needles are not available, use bleach to clean needles. If you have sexual intercourse, use a latex condom to prevent infecting others. Anyone who knowingly exposes others to HIV/AIDS endangers the public health and may be taken into custody, tested for HIV without consent, hospitalized, and isolated.

The availability of more effective therapies for HIV/AIDS is no reason for complacency among healthcare providers or the public. Without aggressive widespread prevention efforts, the tragedy of AIDS will continue to spread. Every healthcare professional has a role in identifying people at high risk, offering education and counseling, encouraging testing, and linking HIV-positive patients with treatment and social services. This is the most cost-effective and humane way to halt the devastation of this disease.

FLORIDA OMNIBUS AIDS ACT

Florida's Omnibus AIDS Act of 1988 and its 1998 update are essential for doctors, nurses, and other healthcare providers to understand. This legislation corresponds closely with federal guidelines and accepted medical practice. Violations are heavily penalized and good-faith efforts at compliance do not ensure anyone against legal difficulties.

Overview

The principal methods for dealing with the HIV/AIDS epidemic as stipulated in the Florida Omnibus Aids Act are education and testing that is informed, voluntary, and confidential.

Florida legislation stipulates four reasons for deviations from traditional educational and testing methods:

• It is assumed that involuntary and nonconfidential testing may drive HIV-infected individuals underground.
• The government cannot constitutionally investigate or regulate much of the private behavior that permits the transmission of HIV.
• Because there is no effective cure for AIDS, there is less incentive to enforce mandatory testing and notification of individuals who have been exposed.
• "The excessively anxious and sometimes intensely hostile public reaction" to people with this illness requires the protection afforded by anonymity.

HIV/AIDS infection not only carries the stigma of a sexually transmitted disease but also the association with homosexuality and injection drug use. Workplace, housing, and insurance discrimination have been (and, in some areas, continue to be) barriers to disclosure of HIV status and seeking treatment. Children with AIDS have sometimes been barred from attending classes and, in at least one instance, a Florida family's home was burned after a family member developed AIDS.

Testing and Informed Consent

Before anyone can be tested for HIV in Florida, they must explicitly consent to be tested. Testing without informed consent can result in disciplinary action by a healthcare provider's licensing board, fines, suspension or revocation of license, and civil liability for negligence and invasion of privacy.

Anonymous and confidential HIV tests are available at county health departments and other registered testing sites. County health departments must obtain written informed consent from the test subject. The legal requirements for counseling and testing are different for public- and private-sector facilities. County health departments and registered testing sites are required to provide private pre-test and post-test counseling for all persons tested.

Confidential HIV tests are increasingly available in private-sector doctors' offices and hospitals. Registered testing sites and private-sector facilities are not required to obtain written consent, provided that the medical record includes documentation that the test was explained and consent was obtained. Written consent is preferable, nonetheless, because it ensures the testing agency or facility and the healthcare worker against litigation.

A general consent to draw a patient's blood and run unspecified tests does not meet the criteria of informed consent for HIV testing. The healthcare provider must explain the HIV test in a manner appropriate to the age, mental capacity, and language skill of the subject. The explanation should include basic information about the test, including data about the disease, its modes of transmission, the meaning of negative or positive test results, HIV infection reporting, and availability of anonymous testing sites.

HIV-positive results are reported to local health departments, who inform the CDC. All test results, positive or negative, are superconfidential, which means that the information is only made available to healthcare personnel on a need-to-know basis. Providers, in turn, must sign a legal document not to divulge this information except on a need-to-know basis.

A separate statute, designed to eliminate "unnecessary diagnostic testing" may make an HIV test illegal even when informed consent is granted. The law forbids diagnostic tests "which are not reasonably calculated to assist the healthcare provider in arriving at a diagnosis and treatment of a patient's condition." It is also forbidden to test for evidence of HIV infection "solely for the purpose of protecting healthcare workers."

MINORS

Children under 18 are considered adults for the purpose of consenting to, or refusing, an HIV test. Parental permission is not required for a child judged by the healthcare provider to be sufficiently mature to consent or refuse an HIV test.

PREGNANCY

A 1998 amendment to the Florida Omnibus AIDS Act requires the physician or midwife attending a woman for a condition related to pregnancy to offer HIV testing in conjunction with her required blood tests. Any pregnant woman who has positive test results should be referred to medical and support services related to HIV/AIDS as well as the Healthy Start Care Coordination System (see Family Health Line in Resources).

Testing Without Informed Consent

HIV testing without informed consent may occur in the following circumstances:

• Bona fide medical emergencies in which treatment is indicated by HIV status
• When there has been significant exposure by medical personnel to a person's blood and the source will not voluntarily submit to HIV testing and a blood sample is not available (court order required)
• In the event of a significant exposure to medical or nonmedical personnel providing help in an emergency and the victim has expired during treatment for the emergency
• When a person is charged with sexual offenses (court order required)
• When donating blood, sperm, or tissue to specialty banks
• For infants whose parents cannot be located after reasonable attempts (court order required, and attempts to locate the parents must be documented)
• Florida law permits HIV testing of prostitutes without informed consent
• When performing HIV testing to monitor the clinical progress of a patient previously diagnosed as HIV-positive or repeated HIV testing conducted to monitor possible conversion from a significant exposure
• Certain medical examiner cases, including court-ordered autopsies
• When a child is deemed too young to make an informed decision (however, parental consent is required; the law does not specify what age is too young to make an informed decision

Confidentiality

Medical records are, by law, confidential. The Omnibus Aids Act designates information about HIV testing as superconfidential if the tests can be traced to an identifiable individual. However, the law uses a narrow definition of "HIV test result."

The superconfidentiality standard applies only to the part of a person's medical record that documents an HIV test and the results, negative or positive, of that test. If the documented HIV status was based on a health department anonymous test or a home testing kit, this does not constitute "HIV test results" and is not covered by the superconfidentiality standard.

Providers' clinical assessments of any medical conditions associated with AIDS are also exempt from the superconfidentiality standard because they do not constitute "HIV test results" unless they include laboratory reports or medical-record notes of an HIV test. For example, a patient's chart documenting symptoms of AIDS and including the word AIDS throughout the chart, but without an HIV test result or report, is not considered superconfidential.

Disclosure of HIV test results is limited to the following:

• The test subject and his or her representative
• Healthcare providers consulting among themselves regarding diagnosis and treatment of AIDS
• The department of health
• Healthcare providers exposed to the subject's body fluids
• Authorized medical or epidemiologic researchers; repeated tests may be given to monitor clinical progress without seeking renewed consent
• Hospital staff, administrators, and healthcare workers who provide aid and care to the subject, on a need-to-know basis; this is especially important in cases of significant exposure to body fluids by healthcare workers

An exposed healthcare worker has the right to subpoena the medical records of the patient and demand that HIV status be determined.

Breaches of Confidentiality

The 1998 amendment to Florida's Omnibus AIDS Act increased the penalty for breaches of confidentiality. Anyone who maliciously, or for monetary gain, breaches the confidentiality of sexually transmitted disease information commits a third-degree felony.

Notification Responsibilities

The healthcare provider ordering an HIV test must make all reasonable efforts to notify the person tested of the results. If the HIV-negative person fails to obtain the results, either by missing a scheduled visit or not calling in, the provider has met the "all reasonable efforts" standard.

However, if the test results show the person to be HIV-positive, the provider must exhaust all available means to contact the patient. If all efforts fail, the responsibility for notification can be transferred to the county health department through HIV infection–reporting requirements.

PSYCHOSOCIAL ISSUES

In the last twenty-five years, HIV/AIDS has proved to be a moving target, spreading beyond gay white men in cities to women, children, and seniors in various communities and populations. As more effective drugs delay the onset of AIDS and extend the lives of those infected, needs for healthcare services are changing. Depending on their personal support system and other resources, some people may require the assistance of a case manager to link them with various care services.

Living with HIV/AIDS

People with HIV/AIDS face a host of personal challenges: unpredictable cycles of illness and wellness; feelings of loss, grief, anger and depression; expensive, complicated, sometimes disfiguring treatments; and, finally, deteriorating health and premature death. The fortunate ones have families and friends who share the experience and offer support as needed. For those without a support system, the challenges can seem insurmountable.

HIV-infected individuals may live for ten or more years before symptoms develop. For those who have been tested and know their HIV status, a decade of uncertainty can be unsettling, even overwhelming.

Although antiretroviral drugs are helping people with AIDS live longer, most still die prematurely. Ninety percent of all adults with AIDS are in the prime of life, which makes it all the more difficult to deal with the diagnosis of a fatal disease. Feelings of rejection, depression, loss, and grief are normal reactions to being diagnosed with HIV/AIDS.

Depression

Depression can be immobilizing and interfere with adherence to the treatment regimen. Thus depression can contribute indirectly to drug resistance and poor management of the disease. Symptoms of depression include:

• Feeling sad, anxious, or "empty" most of the day, almost every day
• Lack of interest or pleasure in almost all activities, including sex
• Changes in appetite and/or weight
• Altered sleep patterns
• Changes in physical activity—ranging from slowing down to agitation or hyperactivity
• Feelings of worthlessness or excessive guilt
• Inability to concentrate or make decisions
• Recurrent thoughts of death or suicide, or suicide attempts

Depression can be treated successfully, both with antidepressant medications and psychotherapy. Recognizing the symptoms of depression in people with HIV/AIDS and referring them for appropriate treatment may greatly improve their quality of life.

Rejection

In many areas of the United States, homosexuality and use of illegal drugs carry an indelible stigma and lead to social and employment discrimination. A diagnosis of HIV/AIDS adds another layer of social pressure and stress for men who have sex with men and injection-drug users, intensifying feelings of rejection. Failure of family, friends, or coworkers to accept and support the person with HIV/AIDS can evoke painful guilt about the disease, about past behaviors, or about the possibility of having infected someone else. The need to practice safer sex can also affect self-esteem and self-image.

Altered Body Image

Over time, HIV/AIDS causes dramatic changes in a person's appearance. The disease itself is associated with severe weight loss and a wasted appearance. Concurrent infections and malignancies, as well as some of the treatments, can cause major alterations in body image. For example, antiretroviral drugs can lead to lipodystrophy, the redistribution of body fat. There are two types of lipodystrophy: fat wasting and fat accumulation. A person with fat wasting (also called lipoatrophy), loses fat from particular areas of the body, especially the arms, legs, face, and buttocks. Someone with fat accumulation (also called hyperadiposity), experiences fat build-up, especially in the belly, breasts, and back of the neck.

Anger

People with HIV/AIDS may feel angry at themselves for contracting the disease, as well as anger at the person who transmitted it. Their once-normal lives are transformed, now organized around detailed medication schedules, medical appointments, and dealing with side effects such as intractable diarrhea and nausea. Expensive HIV/AIDS medications can create financial hardship, even for those who have health insurance. The prospect of impending death is ever-present, but more intrusive when medications fail or cause toxic side effects or when opportunistic infections strike.

Loss and Grief

Living with HIV/AIDS involves loss of many kinds, including:

• Loss of physical strength and abilities, sometimes even loss of vision
• Loss of mental acuity (confusion/dementia)
• Loss of income and savings
• Loss of health insurance
• Loss of employment
• Loss of housing, personal possessions (including pets)
• Loss of emotional support from family, friends, colleagues, religious and social institutions
• Loss of self-sufficiency and privacy
• Loss of social contacts/roles
• Loss of self-esteem

Multiple losses often leave too little time and emotional energy to grieve those losses, and lead to feelings of guilt, helplessness, hopelessness, withdrawal, isolation, rage, and emotional numbness. Physical weakness and/or pain can also impair the ability to handle psychological stresses.

Grief is universal, individual, and unpredictable. Although Elizabeth Kübler-Ross and others have described stages of grief, each person experiences these stages in a different order and at a different pace, depending on their values, cultural norms, and circumstances.

In uncomplicated grief, an individual is able to move through the stages and emerge from the process ready to move on with life. In complicated grief (also called chronic grief), the normal process of grieving is prolonged. This often results from multiple losses that make it difficult to reintegrate and move on.

People who live or work with the HIV/AIDS community for several years may themselves experience chronic grief from the seemingly endless repetition of deaths, funerals, and lost friends. Chronic grief is not peculiar to people with HIV/AIDS. Survivors of the Holocaust, survivors of natural disasters such as earthquakes or tornados, and military veterans have experienced similar emotions.

SPECIAL POPULATIONS

HIV/AIDS takes a heavy toll on people of all ethnicities, genders, ages, and income levels. However, some populations have been uniquely affected by the epidemic. These populations include MSM, injection-drug users, people with hemophilia, women, children, seniors, and people of color.

Men Who Have Sex with Men (MSM)

Twenty-five years ago, America's HIV/AIDS epidemic emerged as a mysterious and deadly "gay disease" affecting men who have sex with men, deepening the nation's longstanding prejudice toward homosexuals. Conservative religious groups saw the epidemic as divine retribution for "unacceptable" and "unnatural" behavior. Despite these obstacles, the gay community's extraordinary advocacy focused attention and research funding on the disease, ultimately helping to extend the lives of people with HIV/AIDS.

Society's prejudice against gays continues to exacerbate the pain of the HIV/AIDS experience, although in many parts of the United States attitudes are slowly changing. Grief and loss are not always validated by the community when relationships are judged unacceptable. Some church congregations, particularly in black communities, fail to offer support to those living with HIV/AIDS or their families because of the stigma attached to homosexuality. The Balm in Gilead is one organization working to build the capacity of faith communities to offer AIDS education and support networks for all people living with and affected by the disease (see Resources).

Health professionals need to be aware that attitudes within affected groups vary as well. HIV-negative MSM sometimes resent educational messages about safer sex and the attention, resources, and services devoted to HIV-positive MSM. Another troubling attitude is that some young men feel HIV infection is inevitable and continue to engage in unprotected sex with multiple partners.

Bisexual men (who have sex with both men and women and may not self-identify as gay) are not the major target for HIV prevention messages. Although they are also at high risk of HIV-infection, bisexual men may not have the same access to social and community resources as MSM. Because of cultural prejudice about homosexuality, bisexual men hide their sexual activities with men (called sex "on the down low") and may unknowingly infect their female partner(s).

Injection-Drug Users

Mainstream America disapproves of illegal drug use and those who become addicted. The methamphetamine epidemic has increased injection-drug use, because the drug is so cheap, and thereby increased the risk of HIV transmission. Successful efforts to prevent the spread of HIV/AIDS, HBV, and HCV among injection-drug users (eg, syringe exchange programs) remain controversial because they are equated with approval of drug use.

Injection-drug use (IDU) often coexists with poverty, low self-esteem, anxiety, depression, and mental illness. While drugs offer temporary relief from the realities of harsh living conditions, they create a tangled web of problems, including risk-taking behaviors that can lead to HIV infection. Drug users who would like to stop using often lack access to inpatient treatment facilities. Long waits for treatment may mean that, by the time a place is available, the individual may be lost to follow-up.

Those drug users who do seek treatment for HIV may find the cost of the drugs prohibitive or the complex multidrug regimens beyond their ability to manage. In addition, street drugs may have dangerous interactions with AIDS medications.

People with Hemophilia

Hemophilia is an inherited disease that prevents blood from clotting. Without injectable clotting-factor concentrates, people with severe hemophilia can bleed to death from a minor cut or bruise. Clotting factor concentrates are made from pooled, donated blood, and before blood testing for HIV was developed these products were contaminated with the virus.

During the 1980s, 90 percent of people with severe hemophilia were infected by HIV and/or HCV through use of clotting factor concentrates. This angered the affected community because manufacturers knew the dangers of contamination but still continued to distribute the concentrates.

Although considered by some to be innocent victims of HIV/AIDS, people with hemophilia did not escape discrimination. The Ryan White Care Act, which funds HIV/AIDS services, and the Ricky Ray Act, which provides compensation to hemophiliacs infected with HIV, were named for HIV-positive boys with hemophilia who suffered serious discrimination in their home towns. Ricky Ray lived in Sarasota, Florida, and was barred from school in 1986 because he was HIV-positive. In 1987, an arsonist burned his family's home. Both Ryan White and Ricky Ray died of AIDS.

Women

Women make up the fastest growing population of people with HIV/AIDS in the United States and around the world. Three-fourths of the women and girls living with AIDS in the United States are African American and Hispanic, even though these populations account for only one-fourth of the females in this country. Most women are infected through heterosexual contact with an infected male partner (often their only partner), or through injection-drug use. But women are also at risk because they are often economically, culturally, and physically less powerful than men.

According to the CDC, female adolescents and young women under the age of 25 are at higher risk for HIV/AIDS and other STDs than older women. Having sex with multiple partners, engaging in risky behaviors such as alcohol and drug use, and/or being unable to negotiate safer sex practices with partners all contribute to this heightened risk of contracting HIV/AIDS.

Studies indicate that U.S. women with HIV receive fewer healthcare services and HIV medications compared to men with HIV, not only because of lack of health insurance but also because of lack of awareness and testing. Taking care of others' needs—children or other family members—often prevents women with HIV/AIDS from taking care of themselves. Postponing medications or missing medical appointments may also be due to financial or transportation problems.

Women may fear disclosure of their HIV status due to concerns about employment, housing, or other discrimination issues. Single mothers are especially vulnerable because they lack adequate financial and emotional support.

Infection with HIV/AIDS may not seem to a woman to be her most serious problem. Income, housing, access to healthcare, possible abusive relationships, and concerns about her children seem more urgent and important, especially when HIV/AIDS symptoms are mild and manageable.

Older women with HIV/AIDS face complex challenges in addition to the common chronic health problems of this group—osteoporosis, high cholesterol, high blood pressure, obesity, and heart disease. Many of the antiretroviral drugs can exacerbate these conditions.

WORLD, an information and advocacy organization publishes an online newsletter for women with HIV/AIDS. This publication offers women important tools to make HIV treatment decisions and discusses prevention and treatment of opportunistic infections, gynecologic health, and more. It also discusses current research and public policy issues that may affect women with HIV/AIDS (http://www.womenhiv.org).

People of Color

African Americans and Hispanics of both sexes have disproportionately higher rates of HIV/AIDS in the United States. There are no biologic reasons for these disparities and there is no single reason why these disparities exist. However, there are a number of contributing factors, including:

• Health disparities, linked to socioeconomic conditions
• Distrust of the healthcare system, based on historical abuses of people of color
• Difficulty communicating health education in culturally appropriate ways to diverse communities
• Denial about HIV risk due to stigma about the disease and its connection to homosexuality and drug use

Prevention messages need to be culturally appropriate and relevant and they must be delivered through channels appropriate to individual communities. These channels may include religious institutions or respected elders in the community. The Office of Minority Health Resource Center is a national resource and referral center on HIV/AIDS and other health topics. This site includes access to publications, databases, events, conferences, and funding resources (http://www.omhrc.gov).

Posted March 30, 2007

Expires August 1, 2008

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