HIV/AIDS
Course Objectives
By completing this course the healthcare professional will be able to:
1. Identify the psychosocial and cultural considerations necessary when working with HIV positive patients.
2. Describe the stigma associated with the HIV virus.
3. Describe counseling techniques that can be used before and after HIV testing.
4. Identify the treatment protocol most often used with HIV/AIDS patients.
6. Describe the tests most often used to detect the HIV virus.
7. Describe the risks and benefits of drug treatment for pregnant women.
Definition of HIV
HIV stands for Human Immunodeficiency Virus.
The immune system is responsible for fighting off viruses in the body. White blood cells protect the body from the germs such as viruses, parasites, fungi and bacteria. The HIV disease is a deterioration of the body’s immune function.
Definition of AIDS
The term AIDS stands for Acquired Immune Deficiency Syndrome.
A positive HIV test result means that the person has been infected with HIV (Human Immunodeficiency Virus), the virus that causes AIDS (Acquired Immune Deficiency Syndrome). HIV disease progresses to AIDS when the CD4+ T cell count drops below 200 cells/mm, and/or you develop an AIDS-defining condition. CD4+ T cells are a type of white blood cell that fights infections. When HIV enters a person’s CD4+ T cell, it uses the cell to make copies of itself. This process destroys the CD4+ T cells, weakening the immune system and making it harder for the body to fight infections.
AIDS Infection
AIDS is caused by infection with a virus called human immunodeficiency virus (HIV). This virus is passed from one person to another through blood-to-blood and sexual contact. In addition, infected pregnant women can pass HIV to their babies during pregnancy or delivery, as well as through breast feeding.
White blood cells of the immune system provide a first line of defense against viruses and cancers. White blood cells affected with the HIV virus resist treatment by disguising themselves as protease inhibitors. Other cells of the immune system that get infected with AIDS are CD4-possitive T-cells, which orchestrate the immune response, and monocyte macrophage cells, which collect infected cells.
Body fluids that pass the Virus:
- blood
- semen
- vaginal fluid
- breast milk
- other body fluids containing blood
These are additional body fluids that may transmit the virus that health care workers may come into contact with:
- cerebrospinal fluid surrounding the brain and the spinal cord
- synovial fluid surrounding bone joints
- amniotic fluid surrounding a fetus
HIV Causes AIDS
HIV destroys a certain kind of blood cell--CD4+ T cells (helper cells)--which are crucial to the normal function of the human immune system. Most people infected with HIV carry the virus for years before enough damage is done to the immune system for AIDS to develop.
HIV and Its Transmission
Research has revealed a great deal of valuable medical, scientific, and public health information about the human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS). The ways in which HIV can be transmitted have been clearly identified.
HIV is spread by sexual contact with an infected person, by sharing needles and/or syringes (primarily for drug injection) with someone who is infected through transfusions of infected blood or blood clotting factors. Babies born to HIV-infected women may become infected before or during birth or through breast-feeding after birth.
In the health care setting, workers have been infected with HIV after being stuck with needles containing HIV-infected blood or, less frequently, after infected blood gets into a worker’s open cut or a mucous membrane (for example, the eyes or inside of the nose).
Kissing
Casual contact through closed-mouth or "social" kissing is not a risk for transmission of HIV. Because of the potential for contact with blood during "French" or open-mouth kissing, the Center for Disease Control recommends against engaging in open mouth kissing with a person that has been infected with the virus. The risk of acquiring HIV during open-mouth kissing is believed to be very low.
Saliva, Tears, and Sweat
HIV has been found in saliva and tears in very low quantities from some AIDS patients. It is important to understand that finding a small amount of HIV in a body fluid does not necessarily mean that HIV can be transmitted by that body fluid. HIV has not been recovered from the sweat of HIV-infected persons. Contact with saliva, tears, or sweat has never been shown to result in transmission of HIV.
Needles
At the start of every intravenous injection, blood is introduced into needles and syringes. HIV can be found in the blood of a person infected with the virus. The reuse of a blood-contaminated needle or syringe by another drug carries a high risk of HIV transmission. Infected blood can be introduced into drug solutions by:
- using blood-contaminated syringes to prepare drugs;
- reusing water;
- reusing bottle caps, spoons, or other containers ("spoons" and "cookers") used to dissolve drugs in water and to heat drug solutions; or Reusing small pieces of cotton or cigarette filters ("cottons") used to filter out particles that could block the needle.
"Street sellers" of syringes may repackage used syringes and sell them as sterile syringes. For this reason, people who continue to inject drugs should obtain syringes from reliable sources of sterile syringes, such as pharmacies.
HIV/AIDS and Stigma
HIV-related stigma refers to all unfavorable attitudes, beliefs, and policies directed toward people perceived to have HIV/AIDS as well as toward their significant others and loved ones, close associates, social groups, and communities. Patterns of prejudice, which include devaluing, discounting, discrediting, and discriminating against these groups of people, play into and strengthen existing social inequalities—especially those of gender, sexuality, and race—that are at the root of HIV-related stigma.
Erving Goffman is widely credited for conceptualizing and creating a framework for the study of stigma. His work was seminal in creating an environment for ongoing academic research on the topic. In his landmark book Stigma: Notes on the Management of Spoiled Identity (1963), Goffman described stigma as “an attribute that is deeply discrediting within a particular social interaction” (p. 3). His explanation of stigma focuses on the public’s attitude toward a person who possesses an attribute that that falls short of societal expectations. The person with the attribute is “reduced in our minds from a whole and usual person to a tainted, discounted one” (p. 3). Goffman further explained that stigma falls into three categories:
1. Abominations of the body—various physical deformities.
2. Blemishes of individual character—weak will, domineering or unnatural passions, treacherous and rigid beliefs, or dishonesty. Blemishes of character are inferred from, for example, mental disorder, imprisonment, addiction, alcoholism, homosexuality, unemployment, suicidal attempts, or radical political behavior.
3. Tribal stigma of race, nation, and religion—beliefs that are transmitted through lineages and equally contaminate all members of a family (Goffman, 1963).
The stigma concept has been applied to myriad circumstances (Link and Phelan, 2001). Goffman’s ideas are a common thread in much of the published research and provide the theoretical underpinnings for much of the literature on stigma and stereotyping.
According to Goffman and other researchers, diseases associated with the highest degree of stigma share common attributes:
- The person with the disease is seen as responsible for having the illness
- The disease is progressive and incurable
- The disease is not well understood among the public
- The symptoms cannot be concealed.
HIV infection fits the profile of a condition that carries a high level of stigmatization (Goffman, 1963; Herek, 1999; Jones et al., 1988). First, people infected with HIV are often blamed for their condition and many people believe HIV could be avoided if individuals made better moral decisions. Second, although HIV is treatable, it is nevertheless a progressive, incurable disease (Herek, 1999; Stoddard, 1994). Third, HIV transmission is poorly understood by some people in the general population, causing them to feel threatened by the mere presence of the disease. Finally, although asymptomatic HIV infection can often be concealed, the symptoms of HIV-related illness cannot. HIV-related symptoms may be considered repulsive, ugly, and disruptive to social interaction (Herek, 1999).
The discrimination and devaluation of identity associated with HIV-related stigma do not occur naturally. Rather, they are created by individuals and communities who, for the most part, generate the stigma as a response to their own fears. HIV-related stigma manifests itself in various ways. HIV-positive individuals, their loved ones, and even their caregivers are often subjected to rejection by their social circles and communities when they need support the most. They may be forced out of their homes, lose their jobs, or be subjected to violent assault. For these reasons, HIV-related stigma must be recognized and addressed as a life-altering phenomenon.
HIV-related stigma has been further divided into the following categories:
- Instrumental HIV-related stigma—a reflection of the fear and apprehension that are likely to be associated with any deadly and transmissible illness (Herek, 1999)
- Symbolic HIV-related stigma—the use of HIV/AIDS to express attitudes toward the social groups or “lifestyles” perceived to be associated with the disease (Herek, 1999)
- Courtesy HIV-related stigma—stigmatization of people connected to the issue of HIV/AIDS or HIV- positive people (Snyder, 1999, based on Goffman, 1963).
Stigma and Access to Care
The literature devoted to stigma and access to care falls roughly into three categories. Most of the literature deals with barriers to care that HIV-positive individuals encounter across the continuum from HIV diagnosis to end of life. The next largest category of studies documents the reluctance of health care providers to treat individuals with HIV infection. Finally, a few studies cover the stigma experienced by providers of ancillary and support services to people living with HIV/AIDS.
Individuals
HIV/AIDS-related stigma affects issues related to HIV testing including delays in testing, the effect of delay on further transmission of HIV, and individuals’ responses to testing positive (Chesney and Smith, 1999). Early detection of HIV infection is important. Knowledge of one’s HIV seropositivity can lead to earlier treatment and improved outcomes (Herek, 1990). Knowledge of seropositivity also can lead to changes in risk behaviors that can reduce or eliminate the risk of HIV transmission. A Kaiser Health Poll report (2000) suggested that fear of being stigmatized by HIV/AIDS has some relationship to people’s decisions about getting tested for HIV. One-third of survey respondents said that if they were tested for HIV, they would be “very” or “somewhat” concerned that people would think less of them if they discovered that they had been tested. In addition, 8 percent of people who had never been tested for HIV said that worries about confidentiality played a part in their decision not to have the test.
Studies provide evidence that stigma is associated with delays in HIV testing among individuals who are at high risk of being infected with HIV (Myers et al., 1993; Stall et al., 1996). In a study of gay and bisexual men who were unaware of their HIV status, two-thirds of the participants expressed a fear of discrimination against people with HIV and said it was a reason for not getting tested (Stall et al., 1996). Earlier in the epidemic, HIV stigmatization was shown to influence the way in which at-risk populations approached HIV testing. People at risk for HIV infection were more likely to seek testing that was offered anonymously (i.e., no names were recorded) than testing that was offered confidentially (i.e., names were kept in confidential files) (Fehrs et al., 1988; Johnson et al., 1988).
HIV/AIDS-related stigma also influences individuals’ responses to testing positive: It aggravates the psychological burden of receiving a positive HIV test (Chesney and Smith, 1999). Earlier in the epidemic, there were reports of severe psychological responses to notification, including denial, anxiety, depression, and suicidal ideation (Coates et al., 1987; Ostrow et al., 1989). Over time, studies have shown a decrease in severe reactions to being notified of positive test results; however, research continues to show that notification is associated with high distress. Distress is greatest immediately after notification and typically declines within 2 to 10 weeks (Ironson et al., 1990; Perry et al., 1990). Stigma also affects the care of HIV-positive individuals. After a person tests positive, he or she faces decisions that include how to enter and adhere to care and whether to disclose HIV seropositivity to partners, friends, family, colleagues, employers, and health care providers (Chesney and Smith, 1999). At each level, a decision to disclose seropositivity may either enhance access to support and care or expose the individual to stigmatization and potential discrimination.
HEALTH CARE PROVIDERS
Accessing health care can be a challenge for people who are HIV positive, because the health care system itself is often a source of stigma. Health care professionals, particularly those who infrequently encounter HIV-positive people, can be insensitive to their patients’ concerns about stigma. In addition, health care professionals are not always knowledgeable about appropriate procedures for maintaining patient confidentiality (Herek et al., 1998).
The literature on caregiving reveals that stigmatization is evident among health care providers. Fear of contagion and fear of death have clear negative effects on health care providers’ attitudes toward and treatment of HIV-positive patients (Gerbert et al., 1991; Weinberger et al., 1992). Health care providers also may fear stigmatization themselves because of their work with HIV-positive patients (Durham, 1994). Caregivers, whether professionals or volunteers, risk what Goffman called “courtesy stigma,” in which they are stigmatized as a result of their association with HIV/AIDS and people living with HIV disease. That stigma may influence their willingness to work with people with HIV or may make their work more difficult (Snyder et al., 1999).
Statistics
United States: Through December 2001, a total of 816,149 cases of AIDS had been reported to the CDC.
Worldwide: Based on estimates from the United Nations AIDS program (UNAIDS), approximately 65 million people have been infected with HIV since the start of the global epidemic. At the end of 2002, an estimated 42 million people were living with HIV infection or AIDS.
UNAIDS estimates 5.0 million new HIV infections occurred in 2002. This represents about 14,000 new cases per day. An estimated 3.1 million adults and children died of HIV/AIDS in 2002.
United States Statistics
HIV ranks 5th among the leading causes of death for all persons between the ages of 35 and 44, but 2nd among Hispanic males of that age group and 1st among African-American males of that age.
HIV/AIDS was the 5th leading cause of death for U.S. women aged 25-44. Among African American women in this same age group, HIV/AIDS was the third leading cause of death in 1999.
Areas Reporting Most Cases
State/Territory |
# of Cumulative AIDS Cases |
New York |
149,341 |
California |
123,819 |
Florida |
85,324 |
Texas |
56,730 |
New Jersey |
43,824 |
Pennsylvania |
26,369 |
Illinois |
26,319 |
Puerto Rico |
26,119 |
Georgia |
24,559 |
Maryland |
23,537 |
Men Who Have Sex with Men
In the United States, HIV-related illness and death historically have had a tremendous impact on men who have sex with men. Even with the increase among drug users, men having sex with men continues to account for the largest number of people reported with AIDS each year.
Impact of HIV Infection on African Americans
In the early 1980s, HIV/AIDS was primarily considered a gay white disease in the U.S. Today, however, the epidemic has expanded and the disease is also a major health problem in the African-American community.
The HIV/AIDS epidemic continues to be a major health crisis facing the African-American community. Although African Americans make up about 12 percent of the U.S. population, they accounted for half of the new HIV cases reported in the United States in 2001. African-American women accounted for nearly 64 percent of HIV cases reported among women in 2001.
Overall, it is estimated that half of new HIV infections occur among teenagers and young adults aged 25 years and younger.
Hispanic Population and Aids
The Hispanic population accounts for 19% of the number of new U.S. AIDS cases reported each year. 81% of the Hispanic population infected with the AIDS virus is male. In 1993, 18% of those estimated to be living with AIDS were Hispanic, while in 1999, 20% were Hispanic. In comparison, non-Hispanic whites represented 46% of people estimated to be living with AIDS in 1993, but only 38% in 1999. . Sixty percent of Hispanics reported with AIDS in 2000 were born in the U.S. 47% of the Hispanic AIDS cases are linked to heterosexual sex.
Tuberculosis and HIV
Tuberculosis (TB) is a disease that is spread from person-to-person through the air, and it is particularly dangerous for people infected with HIV. Worldwide, TB is the leading cause of death among people infected with HIV. However, the risk of developing TB disease is much greater for those infected with HIV and living with AIDS.
Because HIV infection so severely weakens the immune system, people dually infected with HIV and TB has a 100 times greater risk of developing active TB disease and becoming infectious compared to people not infected with HIV. CDC estimates that 10 to 15 percent of all TB cases and nearly 30 percent of cases among people ages 25 to 44 are occurring in HIV-infected individuals.
Prevention:
The essential elements of comprehensive prevention programs are based on several key principles and include a number of essential activities. These are highlighted below.
- A community planning process to ensure efforts are directed to communities at greatest risk
- Epidemiologic and behavioral surveillance to effectively guide prevention efforts
- Voluntary HIV counseling, testing, referral, and partner counseling to provide a pathway to needed prevention and treatment services
- Health education and risk-reduction activities, including individual-, group-, and community-level programs to provide the skills and support necessary for reducing risks
- Accessible diagnosis and treatment of other sexually transmitted diseases to decrease risk of HIV transmission
- School-based prevention efforts for youth to provide young people the skills and support they need to keep from initiating risky behaviors and to adopt healthy ones
- Public information programs to ensure that knowledge and awareness of how to prevent HIV remain high
- Training and quality assurance to provide those implementing programs needed skills
- Laboratory support to keep pace with diagnostic and testing services and related research efforts
- HIV prevention capacity-building activities to support organizations in expanding their abilities to implement effective programs
- An HIV prevention technical assistance assessment and plan to ensure that programs keep pace with prevention technologies
- Evaluation of major program activities, interventions, and services to ensure efforts are effective
HIV Testing
The tests commonly used to detect HIV infection actually look for antibodies produced by the body to fight HIV. Most people will develop detectable antibodies within 3 months after infection, the average being 25 days. In rare cases, it can take up to 6 months.
Many places provide testing for HIV infection. Common testing locations include local health departments, offices of private doctors, hospitals, and sites specifically set up to provide HIV testing.
It is important to seek testing at a place that also provides counseling about HIV and AIDS. Counselors can answer any questions the person might have about risky behavior and ways they can protect themselves and others in the future. In addition, they can help you understand the meaning of the test results and describe what AIDS-related resources are available in the local area.
Only the Home Access test is approved by the Food and Drug Administration. The Home Access test kit can be found at most local drug stores. The testing procedure involves pricking your finger with a special device, placing drops of blood on a specially treated card, and then mailing the card in to be tested at a licensed laboratory. Customers are given an identification number to use when phoning for the test results. Callers may speak to a counselor before taking the test, while waiting for the test result, and when getting the result.
A rapid test for detecting antibody to human immunodeficiency virus (HIV) is a screening test that produces very quick results, in 30 minutes or less. In comparison, results from the commonly used HIV antibody screening test, the enzyme immunoassay (EIA), are not available for 1-2 weeks.
OraQuick is a test that can detect antibodies to HIV in finger-stick whole-blood specimens and provide results in as little as 20 minutes.
The viral load is to be tested 2–8 weeks after the start of treatment. If the drugs are working, the viral load should decrease. It should continue to decrease as they continue to take the medication.
Throughout HIV treatment, the viral load should be tested every 3–4 months to make sure the drugs are still working. If the viral load is still detectable within 4–6 months after starting treatment, they should talk to the doctor about possibly changing the HIV drugs.
Anonymous HIV testing should be available to increase options for individuals seeking to learn their HIV status. In this age of effective treatment, it is increasingly important for people to know their HIV status. Recent studies show that eliminating the availability of anonymous HIV testing services has a deterrent effect on some people's willingness to come forward for testing. People with legitimate concerns about discrimination or people who are unfamiliar with or distrust the public health system are able to gain access to the system through anonymous testing and subsequently receive referrals for needed treatment, care, or prevention services. Partner counseling also can be provided following anonymous testing, if requested.
Voluntary, confidential notification of potentially exposed partners is to be an essential component of a comprehensive HIV prevention program. Partner counseling is a primary prevention service with the following objectives:
- To provide prevention information to people who are at very high risk of becoming HIV infected, but who may be unaware of or misunderstand their risks
- To assist these individuals in obtaining HIV prevention counseling and voluntary testing, and referral
- To provide access to partners who are already infected to prevention and treatment services that can improve their health and quality of life
Health Care Workers
Physicians and many other health-related workers, such as nurses, physicians' assistants, phlebotomists, emergency first responders, and funeral services providers, are involved with procedures that might expose them to HIV. Some procedures are higher risk than others, but there is a theoretical risk of transmission whenever there is the potential for infected blood to come into contact with another person's blood or mucous membranes.
Use of Universal Precautions
Current recommendations for protecting health care workers and their patients from these exposures use "universal precautions," as recommended by CDC's Hospital Infection Control Practices Advisory Committee. Under universal precautions, blood and body fluids (except sweat) of all patients are considered to pose a potential infectious hazard, and appropriate precautions are recommended for all health care personnel (not just physicians) to prevent contact with these fluids.
Safer Medical Devices:
In addition, safer medical devices have been developed that will further reduce the risk of exposure to HIV and other infectious agents. Needle-less IV systems and "safety" needles are helping to further reduce transmission risks, and safer disposal containers are now available to prevent needle sticks or cuts when disposing of used medical devices.
Post exposure Therapy:
While the best protection clearly is to prevent HIV exposure, studies have found that administering antiretroviral therapy immediately following an exposure may reduce the risk of the worker developing HIV infection. CDC recently issued guidelines for the management of health care worker exposures to HIV and recommendations for postexposure therapy (PET). These guidelines outline a number of considerations in determining whether a health care worker should undergo PET and, if so, which regimen.
Effectiveness of Condoms
Condoms are classified as medical devices and are regulated by the Food and Drug Administration (FDA). Condom manufacturers in the United States test each latex condom for defects, including holes, before it is packaged. The proper and consistent use of latex or polyurethane (a type of plastic) condoms when engaging in sexual intercourse--vaginal, anal, or oral--can greatly reduce a person’s risk of acquiring or transmitting sexually transmitted diseases, including HIV infection.
There are many different types and brands of condoms available--however, only latex or polyurethane condoms provide a highly effective mechanical barrier to HIV. In laboratories, viruses occasionally have been shown to pass through natural membrane ("skin" or lambskin) condoms, which may contain natural pores and are therefore not recommended for disease prevention (they are documented to be effective for contraception). Women may wish to consider using the female condom when a male condom cannot be used.
For condoms to provide maximum protection, they must be used consistently (every time) and correctly. Several studies of correct and consistent condom use clearly show that latex condom breakage rates in this country are less than 2 percent. Even when condoms do break, one study showed that more than half of such breaks occurred prior to ejaculation.
Healthcare Professional Guidelines
Preventing Occupational HIV Transmission to Healthcare Personnel
As of December 2001, occupational exposure to HIV has resulted in 57 documented cases of HIV seroconversion among healthcare personnel (HCP) in the United States. To prevent transmission of HIV to healthcare personnel in the workplace, the Centers for Disease Control and Prevention (CDC) offer the following recommendations.
Preventive Strategies
Healthcare personnel should assume that the blood and other body fluids from all patients are potentially infectious. They should therefore follow infection control precautions at all times.
These precautions include:
- the routine use of barriers (such as gloves and/or goggles) when anticipating contact with blood or body fluids
- washing hands and other skin surfaces immediately after contact with blood or body fluids, and
- the careful handling and disposing of sharp instruments during and after use.
Safety devices have been developed to help prevent needle-stick injuries. If used properly, these types of devices may reduce the risk of exposure to HIV. Many percutaneous injuries are related to sharps disposal. Strategies for safer disposal, including safer design of disposal containers and placement of containers, are being developed.
Although the most important strategy for reducing the risk of occupational HIV transmission is to prevent occupational exposures, plans for postexposure management of health care personnel should be in place. CDC has issued guidelines for the management of HCP exposures to HIV and recommendations for postexposure prophylaxis (PEP).
These guidelines outline a number of considerations in determining whether or not healthcare personnel should receive PEP and in choosing the type of PEP regimen.
- For most HIV exposures that warrant PEP, a basic 4-week, two-drug (there are several options) regimen is recommended.
- For HIV exposures that pose an increased risk of transmission (based on the infection status of the source and the type of exposure), a three-drug regimen may be recommended.
Special circumstances such as a delayed exposure report, unknown source person, pregnancy in the exposed person, resistance of the source virus to antiviral agents, and toxicity of PEP regimens are also discussed in the guidelines.
Occupational exposures should be considered urgent medical concerns.
Building Better Prevention Programs for Health Care Workers
Continued work in the following areas is needed to reduce the risk of occupational HIV transmission to healthcare personnel:
Administrative efforts. All healthcare organizations should train HCP in infection control procedures and on the importance of reporting occupational exposures. They should develop a system to monitor reporting and management of occupational exposures.
Develop and promote the use of safety devices. Effective and competitively priced devices engineered to prevent sharps injuries are needed for HCP who frequently come into contact with potentially HIV-infected blood and other body fluids. Proper and consistent use of such safety devices should be evaluated.
Monitor the effects of PEP. More data are needed on the safety and acceptability of different regimens of PEP, particularly those regimens that include new antiretroviral agents. Furthermore, improved communication prior to treatment about possible side effects and close follow-up of HCP receiving treatment are needed to increase compliance with the PEP.
Preventive Therapy for Non-Occupational Exposures to HIV
In recent years, the Public Health Service (PHS) has recommended the use of antiretroviral drugs to reduce the risk of occupational HIV transmission following workplace exposures (e.g., health care workers exposed through accidental needle-sticks). Scientific studies have shown the drugs to be both safe and effective for this use. While this type of therapy is not 100% effective, it has been found to significantly reduce the risk of HIV infection among health care workers following percutaneous (through the skin) exposures.
Questions have arisen about whether similar therapy should be offered to people with unanticipated sexual or drug injection-related exposures to HIV. However, researchers do not know if findings among health care workers are applicable in other settings where therapy may not be initiated as quickly, where the HIV status of the source may not be known, where the regimen cannot be closely monitored, and where repeated exposures may occur. To consider these questions, PHS convened scientific experts from across the nation to review all available data.
PHS has concluded that there are no conclusive data on the effectiveness of antiretroviral therapy in preventing HIV transmission after non-occupational exposures. It is therefore not possible to make definitive recommendations regarding its use. Because the therapy remains unproven and can pose risks, physicians should consider its use only in individual circumstances when the probability of HIV infection is high, the therapy can be initiated promptly, and adherence to the regimen is likely. It should not be used routinely and should never be considered a form of primary prevention.
Decisions regarding use should be made by physicians, in consultation with their patients and, as needed, an expert in the use of antiretroviral drugs. To help guide these discussions, the PHS report provides physicians a summary of available data and outlines factors that should be considered before prescribing therapy. The following factors should be evaluated in considering the potential benefit of therapy:
- Is there convincing evidence that the reported source of exposure is infected? Is the HIV-status of the source known?
- Is there a high risk of transmission from the exposure reported? This depends on the specifics of the risk event (e.g. no condom, torn condom, type of sex, receptive or insertive partner, injection before or after others, number of people sharing injection equipment) and the presence or absence of factors that would modify risk (e.g. vaginal or anal tears, bleeding, visible genital ulcers or other evidence of an active STD, bleach treatment of injection equipment).
- How much time has elapsed between exposure and presentation for medical care? While the interval during which post-exposure antiretroviral therapy for non-occupational exposure can be beneficial in humans is unknown, animal studies suggest that the therapy is most effective when started with 1-2 hours of exposure and is probably not effective when started later than 24-36 hours after exposure.
- What is the frequency of this type of exposure? Antiretroviral treatment should not be used for repeated exposures.
Potential benefits must be weighed against the risks of drug toxicity, the difficulty of compliance with the regimen, and the potential for individuals at risk to abandon more effective prevention strategies. Because post-exposure is an experimental therapy of unproven efficacy, it should only be prescribed with the informed consent of the patient, after explanation of the potential benefits and risks. Antiretroviral therapy should never be used routinely and should not be used when there is a low risk of transmission or when people seek care too late to anticipate an interruption in transmission.
The report also requests that physicians notify CDC of all cases in which post-exposure therapy is prescribed for nonoccupational exposures. Data collected through the CDC reporting system on the utilization, effectiveness, and toxicity of this therapy may provide the information needed to refine future recommendations.
Treatment
Treatment of HIV Infection
When AIDS was first recognized in 1981, patients with the disease were unlikely to live longer than a year or two. Since then, scientists have developed an effective arsenal of drugs that can help many people infected with HIV(human immunodeficiency virus) live longer and healthier lives.
Drugs for Treating HIV
As of 2003, antiretroviral drugs have been approved for treating HIV infection. They are called antiretroviral because they attack HIV, which is a retrovirus. Once inside the cell, HIV uses specific enzymes to survive. Antiretroviral drugs work by interfering with the virus' ability to use these enzymes.
- Reverse transcriptase inhibitors interfere with an enzyme called reverse transcriptase or RT that HIV needs to make copies of itself. There are two main types of RT inhibitors and they each work differently
- Nucleoside/nucleotide drugs provide faulty DNA building blocks, halting the DNA chain that the virus uses to make copies of itself.
- Non-nucleoside RT inhibitors bind RT so the virus cannot carry out its copying function.
- Protease inhibitors interfere with the protease enzyme that HIV uses to produce infectious viral particles.
Drugs Approved for HIV Infection
|
Nucleoside/Nucleotide
RT Inhibitors
- abacavir (Ziagen)
- ddC (Hivid)
- ddI (Videx)
- d4T (Zent)
- AZT (retrovir)
- 3TC (Epivir)
- combivir
- trizivir
- tenofovir
|
Non-nucleoside
RT Inhibitors
- delavirdine
- nevirapine
- efavirenz
|
Protease
Inhibitors
- ritonavir
- saquinavir
- indinavir
- amprenavir
- nelfinavir
- lopinavir
- atazanavir
|
FDA Approves First Drug in New Class of HIV Treatments
In March 2003, the Food and Drug Administration (FDA) announced the accelerated approval of Fuzeon (enfuvirtide) for use in combination with other anti-HIV medications to treat advanced HIV-1 infection in adults and children ages 6 years and older. FDA’s accelerated approval of Fuzeon makes it the first product in a new class of medications called fusion inhibitors to receive marketing approval anywhere in the world. Drugs in this class interfere with the entry of HIV-1 into cells by inhibiting the fusion of viral and cellular membranes. This inhibition blocks the virus’ ability to infect certain components of the immune system.
The approved labeling for Fuzeon warns physicians to carefully monitor patients for signs and symptoms of pneumonia. Patients receiving Fuzeon are advised to seek medical evaluation immediately if they develop signs or symptoms suggestive of pneumonia such as cough with fever, rapid breathing and shortness of breath. In addition, Fuzeon can cause both serious systemic allergic reactions and local skin reactions at the site of injection. Symptoms of a serious systemic allergic reaction with Fuzeon can include: trouble breathing, fever and skin rash, chills, vomiting and low blood pressure. Patients taking Fuzeon should contact their healthcare provider right away if they get any of these symptoms.
People with HIV must take complicated treatment regimens, often taking several drugs on a daily basis. Patients may forget to take their medicine, find the food restrictions difficult to deal with, and may experience unpleasant side effects. Aside from the complicated dosing regimens, antiretroviral drugs themselves may cause serious medical problems. Metabolic changes are occurring in people with chronic HIV infection Osteonecrosis, or weakened bones, is another condition that is being seen more frequently in persons with HIV infection that may be a side effect of anti-HIV drugs. Researchers have found garlic supplements can cause a potentially harmful side effect when combined with a type of medication used to treat HIV/AIDS. Investigators from the National Institutes of Health (NIH) observed that garlic supplements sharply reduced blood levels of the anti-HIV drug saquinavir.
New Drugs
The Pharmaceutical Research and Manufacturers Association list nearly two dozen new anti-HIV drugs now in development. They include new protease inhibitors and more potent, less toxic RT inhibitors, as well as drugs that interfere with entirely different steps in the virus' lifecycle. These new categories of drugs include:
- Fusion inhibitors -- drugs that interfere with HIV's ability to enter a cell
- Integrase inhibitors -- drugs that interfere with HIV's ability to insert its genes into a cell's normal DNA.
Psychopharmacology
Vitiello, Burnam, Bing, Beckman, and Shapiro (2003) conducted additional evaluation on a group of 1,489 individuals within a nationally representative sample of 2,864 adults receiving HIV medical care in 1996 and estimated that 27.2% of people receiving HIV care at that time took psychotropic medication; antidepressants (20.9%), anxiolytics (16.7%), antipsychotics (4.7%), and psychostimulants (3.0%) were the most frequently prescribed psychotropics. Among those with a diagnosed mood disorder (i.e., major depression or dysthymia), 43.2% were prescribed antidepressants and 34.3% anxiolytics.
General use of psychotropics, and particular use of antidepressants, was lower among African Americans when compared with whites or Latinos. And so, while psychotropic use is common among HIV-positive individuals engaged in medical care, more than half of those diagnosed with mood disorders may not be receiving antidepressants, and African Americans are less likely than other racial/ethnic groups to utilize medications for mental disorders (although this may be balanced by greater use of psychosocial interventions).
HIV and Pregnancy
For those who are pregnant or want to become pregnant, they must consider the general risks and benefits of drug treatment to both themselves and the child. Some of the drugs (such as efavirenz and hydroxyurea) should be avoided, because they may cause birth defects if taken early in pregnancy.
Most women with HIV/AIDS in the United States reside in the Northeast and the South. The highest numbers of cases were first observed in the Northeast, but the South has reported the greatest increases in recent years. African-American and Hispanic women are disproportionately affected by the epidemic and account for 80% of AIDS cases reported in U.S. women in 1999. Over time, the proportion of cases in women attributable to injection-drug use has declined, whereas the proportion of cases from heterosexual contact has increased, particularly among young women. Worldwide, approximately 600,000 infants each year become infected through mother-to-child transmission of the HIV virus. In the United States, widespread implementation of the PHS guidelines for universal counseling and testing and perinatal use of ZDV has sharply reduced transmission risk and the number of perinatally acquired HIV infections.
Despite the declines, cases of perinatal HIV transmission continue to occur, largely because of missed opportunities for prevention, particularly among women who lack prenatal care or who are not being offered voluntary HIV counseling and testing during pregnancy. The estimated 280–370 infants born with HIV infection each year represent populations in which prevention efforts are impeded by lack of timely HIV testing and treatment of pregnant women.
Dynamics of Perinatal HIV Transmission
Perinatal transmission can occur during pregnancy (intrauterine), during labor and delivery (intrapartum), or after delivery through breast-feeding (postpartum). In the absence of breast-feeding, intrauterine transmission accounts for 25%–40% of infection, and 60%–75% of transmission occurs during labor and delivery. Among women who breast-feed, approximately 20%–25% of perinatal infections are believed to be associated with intrauterine transmission, 60%–70% with intrapartum transmission or very early breast-feeding, and 10%–15% with later postpartum transmission through breast-feeding. In a randomized trial of formula feeding versus breast-feeding, approximately 44% of HIV infection was attributed to breast-feeding. In breastfeeding populations, a shift toward an increasing proportion of transmission related to breast-feeding is likely to occur as a consequence of successful preventive interventions directed at late prenatal and intrapartum transmission.
Intrapartum transmission can occur during labor through maternal-fetal exchange of blood or during delivery by contact of the infant’s skin or mucous membranes with infected blood or other maternal secretions. Several studies have indicated that most infections transmitted through breast-feeding probably occurred during the first few weeks to months of life. Risk factors during breast-feeding include viral load in breast milk, subclinical or clinical mastitis, breast abscesses and maternal seroconversion during the lactation period.
Several risk factors are associated with perinatal HIV transmission. Clinical factors that increase the likelihood of transmission include immunologically or clinically advanced HIV disease in the mother, high plasma viral load, maternal injection-drug use during pregnancy, preterm delivery, nonreceipt of the PACTG 076 regimen, and breastfeeding. No link has been established between perinatal HIV transmission and maternal age, race/ethnicity, or history of having a previously infected child.
Obstetric factors also influence HIV transmission risk. The risk for perinatal transmission increases per hour duration of membrane rupture after controlling for other risk factors. Delivery >4 hours after the rupture of the fetal membranes can double the risk for HIV transmission. Maternal infection with another sexually transmitted disease (STD) during pregnancy and certain obstetrical procedures can also increase risk. Chorioamnionitis (i.e., uterine infection) has been associated with an increased risk for HIV transmission.
Most of these risk factors were identified before the recommended use of ZDV to prevent perinatal HIV transmission. Their effects are unknown now that most pregnant women infected with HIV are receiving ZDV chemoprophylaxis to prevent mother-to child transmission, as well as combination therapy for their own health. Because of the sharp reductions in perinatal HIV transmission associated with effective antiretroviral interventions, factors that interfere with women or their infants receiving ZDV treatment (e.g., barriers to prenatal care, lack of HIV testing for some pregnant women) are increasingly important.
Prevention of Perinatal Transmission
The birth of every perinatally HIV-infected infant is a sentinel health event signaling either a missed prevention opportunity or, more rarely, a failure of prophylaxis. An opportunity is missed whenever a woman of childbearing age is unaware of her HIV status or her risk for HIV or when an HIV-infected pregnant woman a) does not receive prenatal care, b) is not offered HIV testing, c) is unable to obtain HIV testing, d) is not offered chemoprophylaxis, e) is unable to obtain chemoprophylaxis, or f) does not complete the chemoprophylaxis regimen. Prophylaxis failures occur when an infant becomes infected despite chemoprophylaxis and other preventive interventions. Each of these missed opportunities or failures deserves attention from service providers and prevention programs.
Early Prenatal Care
Maximum reduction of perinatal transmission depends on preventing HIV infection in women or identifying HIV infection before pregnancy or as early as possible during pregnancy. Diagnosis allows a woman to receive effective antiretroviral therapies for her own health and preventive drugs (e.g., ZDV) to improve the chances that her infant will be born free of infection. Early knowledge of maternal HIV status is also important for decisions regarding obstetrical management. Achieving these goals requires increased access to and use of prenatal care.
Please read the following: See HIV in Action
HIV Treatment Adherence
Adherence is a major issue in HIV treatment for two reasons.
- First, adherence affects how well the HIV drugs decrease viral load. When patients skip medication doses even once, the virus has the opportunity to make copies of itself more rapidly. This makes it difficult for the drugs to be effective. Other factors that may affect treatment effectiveness include the baseline viral load and CD4+ T cell count, whether they have any AIDS-related illnesses, and whether you they used HIV drugs before.
- Second, adherence to HIV treatment is very important to prevent drug resistance. Studies have shown that when the patient skips doses, they may develop strains of HIV that are drug-resistant. This may leave them with fewer treatment options if the viral load does not decrease. Because drug-resistant strains can be transmitted to others, it has serious consequences for anyone with whom they engage in risky behavior.
There are several reasons why many patients have difficulty adhering to an HIV treatment plan.
- One reason is that HIV treatment plans are very complicated. Studies have shown that many people may have difficulty adhering to even simple treatment plans. Yet HIV treatment may involve taking 25 or more pills each day. In addition, some HIV drugs must be taken on an empty stomach, while others must be taken with meals. This can be difficult for many people, especially those who are sick or experiencing HIV symptoms. Also, HIV-infected patients may need to continue their treatment regimens for a long time, perhaps for their entire lives.
- HIV-infected patients have reported other reasons for poor adherence, including unpleasant side effects (like nausea), sleeping through doses, traveling away from home, being too busy, feeling sick or depressed, or simply forgetting to take their medications.
AIDS Wasting
AIDS wasting is the involuntary loss of more than 10% of body weight, plus more than 30 days of either diarrhea, or weakness and fever. Wasting is linked to disease progression and death. Losing just 5% of body weight can have the same negative effects. Wasting is still a problem for people with AIDS.
Part of the weight lost during wasting is fat. More important is the loss of muscle mass. This is also called "lean body mass," or "body cell mass." Lean body mass can be measured by bioelectrical impedance analysis (BIA). This is a simple, painless office procedure.
AIDS wasting and lipodystrophy both can cause some body shape changes. Wasting is the loss of muscle. Lipodystrophy is a loss of fat. They are not the same thing. However, wasting in women can start with a loss of fat.
Several factors contribute to AIDS wasting:
- Low food intake: Low appetite is common with HIV. Also, some AIDS drugs have to be taken with an empty stomach, or with a meal. It can be difficult for some people with AIDS to eat when they're hungry. Drug side effects such as nausea, changes in the sense of taste, or tingling around the mouth also decrease appetite. Opportunistic infections in the mouth or throat can make it painful to eat. Infections in the gut can make people feel full after eating just a little food. Finally, lack of money or energy may make it difficult to shop for food or prepare meals.
- Poor nutrient absorption: Healthy people absorb nutrients through the small intestine. In HIV disease, several infections (including parasites) can interfere with this process. HIV may directly affect the intestinal lining and reduce nutrient absorption. Diarrhea causes loss of calories and nutrients.
- Altered metabolism: Food processing and protein building are affected by HIV disease. Even before any symptoms show up, you need more energy. This might be caused by the increased activity of the immune system. People with HIV need more calories just to maintain their body weight.
Hormone levels can affect the metabolism. HIV seems to change some hormone levels. Also, cytokines play a role in wasting. Cytokines are proteins that produce inflammation to help the body fight infections. People with HIV have very high levels of cytokines. This makes the body produce more fats and sugars, but less protein.
Unfortunately, these factors can work together to create a "downward spiral." For example, infections may increase the body's energy requirements. At the same time, they can interfere with nutrient absorption and cause fatigue. This can reduce appetite and make people less able to shop for or cook their meals. They eat less, which accelerates the process.
Wasting Treatment
The best prevention for AIDS Wasting is a baseline nutrition assessment by a Registered Dietitian, with general healthy eating nutrition counseling at diagnosis of HIV. As weight loss occurs, or with the development of symptomatology that interfere with maintaining an adequate intake, follow-up visits to the Dietitian can allow an evaluation with a detailed individualized plan of treatment. Once weight is lost, it is difficult to return to pre-illness weight with similar body composition.
Nutrition Guidelines for People with HIV
Good nutrition means getting enough macronutrients and micronutrients. Macronutrients contain calories (energy): proteins, carbohydrates, and fats. They help maintain body weight. Micronutrients include vitamins and minerals. They keep cells working properly, but will not prevent weight loss.
Good nutrition can be a problem for many people with HIV. When the body fights any infection, it uses more energy and the patient needs to eat more than normal. But when one feels sick, they eat less than normal. Some medications can upset the stomach, and some opportunistic infections can affect the mouth or throat. This makes it difficult to eat. Also, some medications and infections cause diarrhea. With diarrhea, the body actually uses less of what you eat.
With weight lose, they might be losing fat, or they might be losing lean body weight like muscle. If they lose too much lean weight, the body chemistry changes. This condition is called wasting syndrome or cachexia. Wasting can kill. If the patient loses more than 5% of their body weight, it could be a sign of wasting. A moderate exercise program will help the body turn food into muscle. Take it easy, and work exercise into daily activities. Drinking enough liquids is very important when the person has HIV. Extra water can reduce the side effects of medications. It can help avoid a dry mouth and constipation. Be aware that drinking tea, coffee, colas, chocolate, or alcohol can actually make you lose body liquid.
Important Nutrients
There has not been a lot of research on specific nutrients and HIV disease. Also, many nutrients interact with each other. Most nutritionists believe in designing an overall program of supplements.
- People with HIV may benefit from taking supplements of the following vitamins and minerals:
- B Vitamins: Vitamin B-1 (Thiamine), Vitamin B2 (Riboflavin), Vitamin B6 (Pyridoxine), Vitamin B12 (Cobalamin), and Folate (Folic Acid).
- Antioxidants, including beta-carotene (the body breaks down beta-carotene to make Vitamin A), selenium, Vitamin E (Tocopherol), and Vitamin C.
STARTING TREATMENT EARLY DELAYING TREATMENT
Benefits Risks
• Undetectable viral load easier to achieve and maintain• Delay or prevention of immune system damage
• Lower risk of drug resistance with undetectable viral load
• Possible lower risk of HIV transmission• Reduce quality of life due to drugs(short-term side effects and toxicities)
• Greater drug-related adverse events over time (long term side effects toxicities)
• Earlier development of drug resistance if viral load doesn't stay undetectable
• Limited future treatment options
• Avoid negative effects on quality of life
• Avoid drug-related side effects and toxicities
• Delay the development of drug resistant virus
• Have more drug options later on, when the risk of illness is higher
• Possible risk of irreversible immune system damage
• Possible greater difficulty getting viral load to undetectable levels
• Possible increased risk of HIV transmission
Developed by Community Research Initiative on AIDS, 2001, and reproduced with permission.
Living with AIDS
People can live productively with HIV for many years if they are given treatment, social support and better nutrition. Successful long-term care for the infected requires full co-operation and open communication, on all sides – not just between patients and health personnel, but also among family and friends, colleagues and community
Considering the impact of culture is very important in managing HIV disease. Today, as earlier in the epidemic, a diagnosis of HIV infection or AIDS is universally feared. The consequences of HIV are well known and they are usually associated with increasing debilitation and suffering as the disease progresses. In addition, HIV often has psychosocial consequences for the patient and can lead to subtle or overt discrimination, abandonment by family and peers, loss of employment and other negative consequences.
In spite of the advances in medical management of HIV, it remains an incurable condition. Often, the diagnosis brings to the forefront issues such as homosexuality or substance abuse, which many patients have concealed from their loved ones. How patients confront these issues is affected by their culture. Therefore, if we are to provide appropriate and effective palliative care for persons with HIV/AIDS it is important that we have an understanding of the cultural context within which such care will be provided.
All clients who are recommended or who request HIV testing should receive the following information, even if the test is declined:
- Information regarding the HIV test and its benefits and consequences.
- Risks for transmission and how HIV can be prevented.
- The importance of obtaining test results and explicit procedures for doing so.
- The meaning of the test results in explicit, understandable language.
- Where to obtain further information or, if applicable, HIV prevention counseling.
- Where to obtain other services
In certain settings where HIV testing is offered, other useful information includes
- a) descriptions or demonstrations of how to use condoms correctly;
- b) information regarding risk-free and safer sex options;
- c) information regarding other sexually transmitted and bloodborne diseases;
- d) descriptions regarding the effectiveness of using clean needles, syringes, cotton, water, and other drug paraphernalia;
- e) information regarding drug treatment; and
- f) information regarding the possible effect of HIV vaccines on test results for persons participating in HIV vaccine trials.
For efficiency, information can be provided in a pamphlet, brochure, or video rather than a face-to-face encounter with a counselor. This approach allows the provider to focus face-to-face interactions on prevention counseling approaches proven effective with persons at increased risk for HIV infection. Information should be provided in a manner appropriate to the client's culture, language, sex, sexual orientation, age, and developmental level.
HIV prevention counseling should focus on the client's own unique circumstances and risk and should help the client set and reach an explicit behavior-change goal to reduce the chance of acquiring or transmitting HIV. HIV prevention counseling is usually, but not always, conducted in the context of HIV testing.
Client-Centered HIV Prevention Counseling
Since 1993, CDC has recommended one interactive counseling model, called client-centered HIV prevention counseling, which involves two face-to-face sessions with a provider or counselor. This model has traditionally used a two-step HIV testing approach in which clients are physically present at a setting for the HIV test (initial session) and then return for HIV test results (follow-up session).
Each session might require 15--20 minutes (including testing and referral) for clients at increased risk for HIV, but could take only a few minutes for those at lower risk. In the first session, a personalized risk assessment encourages clients to identify, understand, and acknowledge the behaviors and circumstances that put them at increased risk for acquiring HIV. The session explores previous attempts to reduce risk and identifies successes and challenges in these efforts.
This in-depth exploration of risk allows the counselor to help the client consider ways to reduce personal risk and commit to a single, explicit step to do so. In the second session, when HIV test results are provided, the counselor discusses the test results, asks the client to describe the risk-reduction step attempted (and acknowledges positive steps made), helps the client identify and commit to additional behavioral steps, and provides appropriate referrals.
The following components should be part of all HIV prevention counseling sessions:
Keep the session focused on HIV risk reduction. Each counseling session should be tailored to address the personal HIV risk of the client rather than providing a predetermined set of information.
Include an in-depth, personalized risk assessment. This assessment allows the counselor and client to identify, acknowledge, and understand the details and context of the client's HIV risk. Keeping the assessment personal, instead of global, will help the client identify concrete, acceptable protective measures to reduce personal HIV risk.
Acknowledge and provide support for positive steps already made. Exploring previous risk-reduction efforts is essential for understanding the strengths and challenges faced by the client in reducing risk.
Clarify critical rather than general misconceptions. In most situations, counselors should focus on reducing the client's current risk and avoid discussions regarding HIV transmission modes and the meaning of HIV test results. However, when clients believe they have minimal HIV risk but describe more substantial risk, the counselor should discuss the HIV transmission risk associated with specific behaviors or activities the clients describe and then discuss lower-risk alternatives.
Negotiate a concrete, achievable behavior-change steps that will reduce HIV risk. Although the optimal goal might be to eliminate HIV risk behaviors, small behavior changes can reduce the probability of acquiring or transmitting HIV. Behavioral risk-reduction steps should be acceptable to the client and appropriate to the client's situation
Seek flexibility in the prevention approach and counseling process. Behaviors that are safe for one person might be risky for another.
Use explicit language when providing test results. Test results should be provided at the beginning of the follow-up session. Counselors should never ask the client to guess the test results. Technical information regarding the test can be provided through a brochure or other means so the session can focus on personal HIV risk reduction for clients with negative tests and other considerations for clients with positive or indeterminate test results.
Ensure that the client returns to the same counselor. Consistency of the client and counselor relationship helps the client feel secure, reduces misunderstanding, and promotes the likelihood of effective risk reduction.
Additional Counseling Considerations
Clients with newly identified HIV infection have immediate and long-term needs. Some clients might be better prepared to receive positive test results than others. The emotional impact of hearing an HIV-positive test result might prevent clients from clearly understanding information during the session in which they receive their results. Providers should provide appropriate referrals and, when necessary, additional sessions.
When a client receives the test result, the provider should ensure that the client understands it. As part of HIV prevention counseling, providers should explicitly discuss and clarify any misconceptions regarding HIV transmission risk to partners associated with specific sexual or needle-sharing activities. Clients should be advised to refrain from donating blood, plasma, or organs. For sexually active clients who are not in mutually monogamous partnerships, providers should also address strategies to prevent other sexually transmitted or bloodborne infections (e.g, gonorrhea, syphilis, chlamydia, herpes simplex virus, human herpes virus type 8, hepatitis B virus, hepatitis C virus, and cytomegalovirus).
The first few months after persons learn they are HIV infected are important for accessing medical and other support services to help them obtain treatment and establish and maintain behavior changes that reduce the likelihood of transmitting the virus to others. For example, persons with ongoing risks might be referred for prevention counseling to prevent transmission to others or for prevention case management. For all newly identified clients, a follow-up appointment 3--6 months after diagnosis is recommended.
Story of Anguish
It was Saturday night, two weeks ago. My husband and children were downstairs watching a movie while I was upstairs on the computer. I was watching a conversation on the screen in front of me. I casually looked down the list to see if there were any of the regular people there. I did not see any I recognized and was about to click off that room and go to another one, when a name on the list seemed to jump out and grab my hand as if to stop me from leaving.
Since I do not speak to anyone on line unless they have a profile, I first checked to see if there might be any information on the Friends Profile for this person. I was not prepared for what I saw. It was the picture of a man in his early thirties, dark eyes a piercing brown, looking at me as if he could actually see me, through me. There was no smile on his face and there was a quality of deep sadness and pain about him. His haunting stare sent a shiver through me. It was nothing that I could put my finger on, just so hurt, so lost and so very much alone. Helplessly, I sat there staring at this man child on my screen, drawn ever deeper into the whirlpool of his sad eyes. His pain was tangible. I could see it, taste it, touch it. I felt a compelling need to envelop him in my arms, to hold him, to comfort him. He was a man, yes...but he was also a boy.
Although I had never sent a chat invitation before, I knew I was going to now. Even if I had tried to stop myself, it would have been an effort in futility. I was not controlling this situation anymore. A power stronger than I had ever known before, easily overrode any bit of sensibility Iso desperately clung to. I had fallen into the web he unknowingly was spinning around my heart. Without weighing the costs or even caring what they might be, I surrendered to him. If I had thought that I could provide him with the benefits of my life‚s lesson, I was badly mistaken. If I had thought that there were some pearls of wisdom that I could impart to him, that could help and teach him, lead and guide him, I could not have been more wrong.
His name was Peter and he told me his life‚s story. He spoke as a child, simply, sometimes in broken English and was easily confused trying to express himself. He repeated statements and constantly asked the same questions, like it was the first time he was asking them. He spoke about his birth, childhood years, being a teenager, becoming a man. He told me his secrets, his dreams, his heart‚s desires. We spoke long into the night never aware of the minutes slipping by one into the next. We had entered into another dimension where time had no hold on us. I was wrapped in his stories, telling him mine. As I listened to him, I began to realize one very horrible truth. He was a man...but far more a boy than I could have ever imagined.
He told me of his sorrows and pain. Revealing to me things that are so unimaginably wicked and cruel. He spoke of his own childhood experiences of sexual molestation at the hands of a relative. The gruesome and degrading things he was forced to endure only because he tryed to tell someone, anyone, what was happening to him. But it was all for nothing. No one believed that this relative would ever do something so hideous. He suffered alone with this pain and torment for many years. No one believed him...no one protected him. He told me that twelve years ago he was diagnosed with HIV/AIDS. Without hesitation, he calmly told me he was very aware that his life would be cut tragically short because of this awful disease. It came to light that he had contracted this deadly disease from his molester during the course of his abuse.
His is a death sentence, handed down to him by a most vile and evil man. He told me how he was forced, by his own family, in his own home, to eat off paper plates with plastic utensils drinking from paper cups, while everyone else used fine china and sterling silver. He told me of how his own parents abandoned him when he needed them the most. He shared his secret that he had never been intimately involved with a woman, embarrassed to admit that at thirty two, he was still a virgin. He spoke of his short lived marriage. How his wife cringed every time he tried to embrace her and eventually demanded that he stop touching her all together.
He told of how some of his best friends now crossed the street to avoid him. He told me about not being allowed to hug any of the children within his extended family for fear that he would infect them. I would have never thought myself capable of feeling the anger and rage that I felt, and the overwhelming pain and anguish that tightened its grip upon my heart. Then very simply, with the innocense of that child within his spirit, he taught me the greatest lesson that I have ever learned. In doing so, he gave to me, the most precious gift I will ever receive. As I sat transfixed in front of the computer screen his questions took shape, and appeared before me. "Would you let me hug your children? Would you be afraid to hug me? What does it feel like to be hugged tightly, held close, loved? What does it feel like to hug your children. I have never been allowed to do that. Please, can you describe the joy of that experience to me?"
Psychological Impact of AIDS
Communicating with children and extended family members can be very difficult for parents with HIV infection. Many parents appropriately choose to defer discussing their illness during the early stages of infection when health problems are minimal or nonexistent. As the disease progresses, parents may feel increased pressure to talk about the illness with children and family members, especially during times when parental functioning is disrupted (e.g., during hospitalizations or when the illness becomes debilitating).
Because parents may feel guilt or shame about behaviors associated with HIV infection (e.g., drug use, choice of partner), they may have difficulty communicating with their children and families about the disease. In addition, many adults believe that not telling children painful facts will somehow reduce the impact. Ultimately, children cannot be protected from the realities of parental illness and loss. Children need their parents to acknowledge the illness and to indicate, particularly as parents’ health worsens, that the children’s needs will continue to be met. Emphasis is usually placed on parents simply disclosing their HIV status to their children; however, children need ongoing communication concerning parents’ health status and prognosis. Such communication could play an important role in decreasing children’s anxiety and increasing their ability to adapt to parental illness.
Nevertheless, health care providers should respect the wishes of parents who are either unwilling or unable to explain the nature of their illness to their children. Parents should be encouraged to discuss the more general issues surrounding illness and prognosis with their children. If, however, during the late stages of HIV disease, parents are still unable to discuss the situation with family members, primary care practitioners should consider referring patients to mental health or social services. Often the complex mental health and psychosocial issues holding parents back from revealing the truth about their illness require ongoing mental health intervention before parents can open up to their children or families.
Depression:
Clinical depression is the most commonly observed psychiatric disorder among patients with HIV infection and affects up to 20% of such patients. Multiple risk factors for depression exist in this group. The diagnosis of HIV infection itself may lead to sadness and fears of stigmatization. People with HIV infection who are members of stigmatized minorities may find it difficult to avoid internalizing negative self-images; moreover, HIV infection may result in wasting, weakness, pain, confusion, and disfigurement, which add to patients’ negative feelings. Although sadness and grief are normal responses to these factors, clinical depression, which causes substantial morbidity and may increase mortality, is not.
Practitioners should screen for depression on a yearly basis and more often when symptoms suggest. If the practitioner’s evaluation indicates depression, even though the patient denies that he or she is depressed, the diagnosis should be made and treatment should be strongly recommended. For diagnosis of depression, practitioners should be familiar with and use the diagnostic criteria established in the Diagnostic and Statistical Manual of Mental Disorder-IV (DSM-IV).
Practitioners should be aware of potential side effects of all medications patients are taking. Specifically, efavirenz for HIV/AIDS and interferon-[1] for HCV are associated with episodes of depression varying in intensity. These medications may need to be discontinued or used with antidepressant therapy. Should these medications be continued, the primary care practitioner should work closely with a psychiatrist.
Because weight loss, irritability, restlessness, disturbed sleep, fatigue, anorexia, lethargy, or diminished interest in sex (all symptoms commonly observed in HIV-infected persons) may indicate depression, it is important for primary care practitioners to determine if patients are experiencing the effects of HIV, side effects of medications, or clinical depression.
HIV infection can lead to a confluence of severe medical, psychological, and social stresses that can result in alienation from family and friends, loss of job and income, and chronic physical pain. While many people who are infected with HIV think of suicide at some time, only a small minority of HIV-infected persons commit suicide. A great many people with HIV infection lead fulfilling lives (sometimes even more fulfilling after the HIV diagnosis); nevertheless, the potential for suicide in this population should be recognized.
Suicide
Prevalence studies of suicidality in patients infected with HIV have yielded varied results. One early retrospective study of medical examiner reports indicated a 36-fold greater prevalence of suicide in persons with HIV infection than in age-matched persons without HIV. A more recent study by the same investigators found only a small increase in the rate of suicide compared to other populations. In the general population, approximately 70% of suicides are committed by those who are depressed. Because anyone with HIV infection is likely to experience periods of intense sadness, thoughts of suicide are not uncommon. However, such factors as improved social support and prognosis can decrease the depth of true clinical depression and, therefore, the potential for suicide. The risk of suicide today may be less than that during earlier years of the epidemic when patients had fewer treatment options and a greater sense of isolation.
Anxiety Disorders
Anxiety is a common symptom in patients with HIV infection. When anxiety is severe or persistent, patients may have an anxiety disorder. These disorders include adjustment disorder, obsessive compulsive disorder (OCD), panic disorder, post-traumatic stress disorder (PTSD), and generalized anxiety disorder. Primary care practitioners need to be aware of the differences among the specific disorders in order to appropriately treat or refer patients and to help them receive optimal care. People with histories of anxiety disorders or major depression and those with limited social support are particularly susceptible, although anyone can experience severe anxiety during the course of HIV infection. As HIV disease progresses, anxiety may increase.
PTSD (Post Traumatic Stress Disorder)
Although PTSD has a lifetime prevalence rate of approximately 1.3% to 7.8% in the general population, the rates of PTSD in the HIV-infected population are much higher. Although chronic illness can sometimes in itself be a traumatic experience leading to PTSD, more often a history of physical or psychological trauma (and diagnosis of PTSD) co-occurs with an individual’s HIV status.
Trauma can affect both psychological and physical functioning. Some research has suggested that the physical effects of trauma have been related to significant health problems such as diminished functioning of the immune system and increased susceptibility to infections. The psychological effects of PTSD may manifest themselves in increased risk-taking behavior, such as substance use, poor eating habits, or unsafe sexual activity. In addition, patients with PTSD may suffer from depression, self-isolation, impairments in trust and attachments, and feelings of anger. Patients with HIV/AIDS may also be affected by past trauma to the point that it manifests in disease-management problems such as disrupted or negative interactions with medical personnel and/or medication non-adherence.