DARRELL E. WARD

The AmFAR AIDS Handbook

The Complete Guide to Understanding HIV and AIDS
Introduction by Mathilde Krim, Ph.D.

An Excerpt

Chapter 1

DIAGNOSIS OF HIV INFECTION AND INITIAL PHYSICIAN CARE

When a person learns that he or she tested positive for the human immunodeficiency virus (HIV), the world is turned on end. But today, a person infected with HIV has more cause for hope than ever before. "It's important for people diagnosed with HIV not to beat up on themselves," said Michael Para, M.D., an AIDS specialist at Ohio State University Hospitals. "With the help of their physician, they stand a good chance of striking back at the virus and of buying themselves time and a better quality of life. But they have to want to do it; they have to believe that something can be done."

And something truly can be done for people with HIV infection. By finding an experienced physician, working with that physician, taking care of themselves through rest, exercise, and a nutritious diet, most HIV-positive people remain relatively healthy for an average of ten years or more after the infection is diagnosed. And this incubation period is growing longer with the help of new treatments and preventive therapies. People with HIV infection and AIDS remain well longer than was possible just a few years ago. They are enjoying their families and friends, continuing in their careers, and leading fulfilling lives in spite of HIV.

This success is due to research that has delivered a growing understanding of HIV itself and how it causes disease. This new understanding continues to lead to the development of new drugs that target specific stages of the virus's life cycle. Research on HIV led, for example, to the development of several classes of anti-HIV drugs, including protease inhibitors. The use of protease inhibitors in combination with previously approved anti-HIV drugs has given rise to the theory that it might be possible to cure HIV infection in at least some people: It might become possible to eliminate the virus from people who are asymptomatic and who still have a strong and intact immune system and a relatively small number of HIV particles in their body. Newer drugs now under development may bring further improvements in treatment.

Whether current therapy will truly cure the disease in some people remains to be determined, but scientists have recently learned that early diagnosis and early multidrug treatment enable many people with HIV infection to survive significantly longer. It is therefore essential that all people who might have been exposed to HIV have themselves tested so that if infected they can seek early treatment. In addition, people who know they are infected are less likely to transmit the infection to others.

Tests for HIV have also evolved dramatically. Individuals can even collect their own blood sample and be tested with complete anonymity using kits designed for home use. Physicians can better determine when to begin or change anti-HIV treatments in patients using tests that measure the amount of HIV in the bloodstream.

DIAGNOSIS OF HIV INFECTION

HIV infection is usually diagnosed using a screening test that detects the presence of antibodies to HIV in blood serum. HIV testing is available in a variety of settings, including neighborhood clinics, health-department clinics, physician's offices, and hospitals. Home blood-collection kits involve placing a sample of blood on an absorbent material and mailing the sample to a laboratory for analysis. The results are given over the telephone using an identification number that comes with each kit, thereby providing the user complete anonymity. The test result of a person who is HIV positive is given over the telephone by a trained counselor.

Proper Use of the HIV Antibody Test

Pretest and Post-test Counseling

Every person who makes the decision to be tested for HIV should receive counseling as part of an HIV test. Pretest counseling is given before the test is done, post-test counseling after the results are disclosed. In some situations, however, little or no counseling may be provided. A person who is tested may simply be told that he or she is HIV positive, with little else said about the meaning or implications of the finding, and the person may not know what to do next. Anyone in this position should read about post-test counseling below, followed by "What to Do after Receiving a Positive HIV Test Result."

Pretest Counseling
Pretest counseling is important because it provides information about HIV disease, about its transmission and prevention, and about the prevention of all sexually transmitted diseases. It is also an opportunity for the counselor to assess how a person is likely to respond to a positive or negative test result, and it makes it more likely that the person being tested will return to learn the test's result. When pretest counseling is completed, and the counseled person wants to proceed with the test, a sample of blood, saliva, or urine (depending on the type of test used) is collected and sent to a laboratory for analysis. The person being tested is then asked to return within a few days, a week, or sometimes longer, to learn the result.

Post-test Counseling
Post-test counseling is extremely important. The counselor typically comes to the point without delay: "Your test result is back. You are HIV positive." Or: "Your test result is negative." Post-test counseling immediately follows.

Post-test Counseling for Negative Test Result
Post-test counseling for a negative test result involves talking with the person about the importance of safer sex and of avoiding other risky behaviors, and reminding the person that people at high risk should not donate blood. The counselor may also explain the window period for HIV infection and recommend that the person return for retesting in the near future.

Post-test Counseling for an HIV-Positive Test Result
Post-test counseling is critical for the person who is HIV positive. It can determine whether a person will seek -follow-up care or whether they will deny their diagnosis and delay seeking care. (Instead, they may seek escape through alcohol or drug abuse; see "The Psychological Stress of a Positive HIV Test Result".) Unfortunately, individuals who deny their positive HIV status are also denying themselves the benefits of early antiHIV therapies, preventive treatment of opportunistic infections, and early emotional and psychological support, all of which will improve their quality of life and chances of prolonged survival. They may also transmit the infection to others.

For these reasons, it is important for post-test counseling to emphasize that much can be done to help the person with HIV infection. It should also accomplish the following:

Help the person work through his or her feelings about the positive test result and maintain rapport with the counselor.
Provide the names of physicians with experience in treating people infected with HIV.
Discuss whom should be told about the person's HIV-positive status (see "Disclosing One's HIV Status").
Provide written information on personal care, HIV disease, and preventing transmission of the virus to others.
Refer the person to a health-department social worker, case manager, or local AIDS service organization to help in locating needed resources, social and emotional support, and other help.

What to Do after Receiving a Positive HIV Test Result

When the results of an HIV test come back positive, what then? Post-test counseling, if done well, will help answer that question. But when little or no counseling is provided, what should a person do? Under these circumstances, there are several things the person who is newly diagnosed with HIV infection should realize:

Being HIV positive does not mean one has AIDS. AIDS is one of several stages of HIV disease. HIV disease begins when a person becomes infected with the virus. On average, ten or more years pass from the time of a person's infection until signs of clinical AIDS appear. With proper care, this long "incubation period" can be prolonged.
Some people have signs of AIDS when they first learn of their HIV-positive status, but advances in medical research and care are now allowing many people with AIDS to lead comfortable and productive lives.
Anyone who is HIV positive can transmit his or her infection to others through unsafe sex or needle sharing, or any activity that results in the exchange of body fluids (including the sharing of shaving razors, ear or body piercing, blood-brother rituals)-- even though the person may feel healthy and show no outward sign of HIV disease. People who are HIV positive must practice safer sex or abstain from sexual activity; injection drug users should never share needles.
HIV-positive individuals should not donate blood and should not be listed as organ donors on their driver's license.

There are three steps that a person with HIV should take to ensure that he or she receives the best care possible: identifying where to go for help and dependable advice, seeking care from a physician experienced in the treatment of HIV disease, and determining whom to tell about one's positive HIV status.

Where to Find Help
There are three invaluable sources of help for the person with HIV infection who does not know where to turn:

The National AIDS Hotline, operated by the Centers for Disease Control and Prevention (CDC), is an important source of a variety of HIV information. The toll-free number is 1-800-342-2437.
Your state's HIV/AIDS hotline; obtain the number from the National AIDS Hotline. Calls to the state HIV/AIDS hotline are toll free.
The nearest AIDS service organization or AIDS task force; obtain the name and phone number through the state HIV/AIDS hotline. Local AIDS service organizations have information on local support groups; financial, legal, and social services; and state HIV drug assistance programs. They can also provide the names of local physicians experienced in treating people with HIV disease.

Obtain Care from an Experienced Physician
The treatment of HIV infection is becoming increasingly complex. Successful treatment depends on a thorough understanding of how HIV causes disease and on how to use the growing number of potent drugs available. Used incorrectly, these drugs not only will be less effective, but also can reduce the effectiveness of other drugs that may be needed in the future. For these reasons, the single most important step in living with HIV is to seek medical care from a physician who has experience with HIV disease. Research reported at the Third Annual Conference on Retroviruses and Opportunistic Infections in 1996 found that people with AIDS whose primary-care physician had no previous experience with HIV disease died more than a year sooner than did patients whose primary-care physician had cared for at least five other HIV-positive patients. Individuals who were treated by these more experienced physicians tended to have the status of their immune system monitored more regularly through CD4 lymphocyte counts (see below), received timely and appropriate prophylaxis for Pneumocystis carinii pneumonia (PCP), and received antiretroviral drugs more frequently. Physicians in the study who were experienced with HIV disease also tended to consult more often with specialists.

A good physician is a person's partner in medical care. He or she will be familiar with the latest studies in antiHIV therapy. Individuals being treated for HIV disease almost always have options. A good physician will describe the treatment options, explain their advantages and disadvantages, make recommendations based on his or her experience and the patient's circumstances, and answer a patient's questions.

The final say as to which treatment option is used, however, belongs to the patient. This is important. The patient must make the decision as to what treatment is pursued because HIV treatments are often complex and adherence may be difficult. For success, the patient must be committed to his or her therapy.

The patient should never be afraid to ask his or her doctor questions. So that nothing is forgotten, the patient should write down questions and concerns as they arise at home and take the list to the next checkup. Also the patient should write down any side effects or other problems that he or she experiences with medication(s), even things that the patient perhaps believes "come with the territory" and that he or she should simply tolerate. These may include such things as difficulty in taking a medication, the need for better pain control, trouble sleeping, or feelings of anxiety or depression. The physician can often help solve these problems. The patient can ask questions of nurses, too. An experienced nurse can often be easier to talk to and provide information in a less hurried manner than a physician. If the doctor doesn't mind the presence of a tape recorder, it can be helpful to record what the doctor says so his or her recommendations can be listened to again at home.

The Initial Physical Exam
The first visit to a physician following the HIV test involves a thorough physical examination that includes a number of laboratory tests. It should also include a discussion of how HIV is transmitted, and how to prevent transmission. The initial exam should include the following:

A detailed medical and drug-use history (a sexual history is also important, but some physicians postpone it until a bond of trust is developed with the patient).
Weight of the person. This baseline measure is important in HIV-positive patients because unexplained weight loss is an indication of infection or wasting (cachexia), a common occurrence in HIV disease.
Oral exam. Examination of the mouth should be done during every physical exam. The earliest signs of HIV disease, disease progression, and onset of AIDS often occur in the mouth. Conditions that can be present include the following:
Candidiasis, a yeast infection.
Kaposi's sarcoma, a type of cancer.
Hairy leukoplakia, a viral infection.
Herpes simplex virus.
Oral warts, a viral infection.
HIV-associated gingivitis and HIV-associated periodontitis, both of which are bacterial infections.
Eye exam. This includes a detailed history of visual disturbances and careful examination of the retina, the light-sensitive tissue that lines the inside of the eye. The physician looks in particular for signs of cytomegalovirus (CMV) infection of the eye, or CMV retinitis. It is one of the most common opportunistic infections associated with HIV, and it must be treated promptly to prevent or slow vision loss. It is more common during advanced disease.
Genital-urinary exam for the presence of sexually transmitted diseases, which enhance the transmission of HIV.

LABORATORY TESTS. A number of laboratory tests are usually ordered during the initial examination of a person who is HIV positive. The tests are done on a blood sample to help determine the health of the person's immune system, the level of activity of HIV in the person, the presence of certain infections, and the risk that certain opportunistic infections might occur. These tests include the following:

CD4 lymphocyte counts. CD4 lymphocytes, also known as helper T lymphocytes, are essential for initiating and coordinating immune responses. A decline in the number of CD4 lymphocytes occurs during the course of HIV disease, and as their numbers drop, the risk of certain opportunistic infections increases (although some individuals can have very low CD4 cell numbers and show few other signs of serious illness). For this reason, CD4 cell counts, which are usually given as the number of CD4 cells per cubic millimeter of blood (cells per mm³), are often used as a measure of the health of an HIV-infected person's immune system. CD4 cell counts are also used to determine when preventive treatments for PCP and certain other opportunistic infections should begin. Percentages of CD4 lymphocytes (i.e., CD4 lymphocytes as a percentage of total lymphocytes) are used by some physicians to monitor the progression of HIV disease. For the association between helper T-cell numbers and ratios and HIV disease, see Chapter 4 and Appendix 2; for a brief description of how CD4 tests are done, see the box in Chapter 16, "Why They Call It 'CD4': Telling Immune Cells Apart."
Viral-load testing. Viral load is a measure of the amount of free HIV particles present in a person's blood. Viral load is the best predictor of HIV disease progression, and it is used to determine whether antiretroviral therapy is working or should be changed. Changes in viral load occur relatively quickly compared to changes in CD4 lymphocyte counts. For this reason, a physician might orderviral-load testing within two to four weeks after the patient begins antiretroviral therapy, and as often as every three or four months thereafter.
Tuberculin skin test. This test, which is also known as the PPD test, is done to diagnose the presence of tuberculosis (TB). Those who test positive harbor the TB bacterium, Mycobacterium tuberculosis. Those with a positive test result but who do not have active disease (i.e., the disease is not transmissible to others) should begin prophylactic treatment; those with active TB should be isolated and receive treatment.
Syphilis test. Syphilis is often present as a coinfection with HIV, and the two are linked epidemiologically. Treatment is begun in those who have the disease.
Some physicians also order tests to determine whether the person has been exposed to CMV, toxoplasmosis, or hepatitis. If tests show that a latent infection is present, the physician can be prepared to begin prophylaxis or treatment if needed.

Evaluation of HIV Disease in Women
The evaluation of HIV disease in women should also include the following:

A Pap test, because women who are HIV positive have an increased risk of cervical cancer.
Rectal-vaginal exams for candidiasis and other infections.
Pregnancy counseling. This should include the latest information on preventing transmission of HIV from mother to infant during pregnancy and childbirth. HIV-positive pregnant women should be warned againstbreast-feeding.

The Follow-up Visit
Evaluation of a person who is HIV positive is determined by three measures: viral load, CD4 lymphocyte counts, and the physical findings of the initial examination. These indicators, together with the individual's medical history, provide an overall assessment of the person's health status.

This overall evaluation is conducted during a follow-up medical visit that occurs after laboratory test results have been received. The overall medical and laboratory findings might reveal that the patient is generally in good health (i.e., that treatment need only be discussed for the time being); that antiHIV therapy is indicated, either alone or concomitant with preventive treatment for opportunistic infections; or that some other intervention is needed.

If the subject was not discussed during the initial examination, the follow-up visit should also include a session with, or referral to, a social worker or case manager (a person who coordinates the various kinds of assistance and resources that can be needed by someone with HIV disease). The physician's office might also direct the person with HIV disease to needed assistance programs. The state HIV/AIDS hotline and the local AIDS service organization can also provide this information.

Disclosing One's HIV Status
One of the first questions that comes to mind after receiving a diagnosis of HIV infection is who should be told about it? One's seropositive status is highly personal information. Deciding whom to tell is often not easy.

Reporting Laws
AIDS is a reportable illness in all 50 states. That is, doctors must report every case of AIDS they diagnose to the state health department, along with the patient's name and address. This information is kept confidential; by law, it cannot be made available to insurance companies, employers, or any others. This policy of confidentiality has been widely respected and rarely breached. And while state health departments report case statistics to the CDC, names, addresses, and other personal identifiers of people infected with HIV are not sent to the CDC. State health departments and the CDC use the statistical information to monitor changes in the AIDS epidemic.

As of late 1996, more than half of the 50 states had laws or regulations requiring similar confidential reporting by name of all persons with HIV infection, not just AIDS cases.

Partner and Spousal Notification
The federal government also requires all states to have a partner and spousal notification system in place. If a person tests HIV positive, that person's spouse, sexual partner(s), and needle-sharing partner(s) should be notified that they have been exposed to HIV, that they might have become infected, and that they should be tested. Partner notification is usually discussed during post-test counseling with all people who are HIV positive. Notification itself can be carried out by the HIV-positive individual, the physician, the social worker, or personnel of the state health department. If a person has been tested at ahealth-department clinic, the counselor will ask who will inform those to be notified. The counselor may also suggest how disclosure can be made. If the HIV-positive individual declines to contact his or her partner(s), the counselor will ask for their names, contact the appropriate parties, and inform them that they may have been exposed to HIV, might have become infected, and should be tested. If one is tested through the services of a private physician, either the patient or the physician can perform the notification; if neither wishes to, the health department is responsible for contacting the partner(s).

This notification process is similar to that followed for other sexually transmitted infections (e.g., syphilis and gonorrhea) and has effectively limited their spread. It is important to note that while anyone who is HIV positive deserves the best available medical care, he or she also has a personal responsibility to protect the health of current and previous partners and to cooperate with medical and public-health personnel in helping to control the HIV epidemic. An important aspect of this cooperation is helping them carry out the partner notification procedure.

Determining Whom Else to Tell
Disclosing one's HIV status carries significant risks. They can include rejection by one's partner, spouse, family, friends, neighbors, or employer. It can result in loss of child custody, and discrimination in housing, insurance, and employment.

But disclosing one's HIV status to the right people is also often the first step toward a healthy acceptance of the reality of one's HIV-positive status. In addition, it is the first step in developing a firm emotional support system that is important for maintaining psychological well-being in the face of HIV disease. The people who are a part of such a support system are a needed outlet for one's feelings, fears, and anxieties. If the support system includes others who are HIV positive, the latter can affirm that they share the same feelings and fears. They can be a source of encouragement and of ideas on how better to cope with HIV-associated problems, and how to maintain control of one's life. Studies have shown that people who have a strong support system tend to experience a higher quality of life and to do better in the course of their disease.

Meeting other HIV-positive people can be done with the help of one's physician or social worker, or by joining an HIV support group. There also exist buddy programs that team a recently diagnosed person with an HIV-positive person who is more experienced in dealing with the issues that come from learning one's HIV-positive status.

People to turn to for support other than (or in addition to) family and friends include the following:

Social workers

Professional counselors and therapists

Volunteers serving as buddies in programs run by AIDS service organizations