What You Need to Know

The Accuracy of the Test

The HIV blood test detects and measures the antibodies to HIV (human immunodeficiency virus, sometimes called the AIDS virus). This test, like all tests in medicine, is subject to human and laboratory error.

Occasionally people can’t believe a positive blood test and want a second test. This makes sense especially if a person has had no high-risk behaviors. Despite the test having essentially no false positives—results that are positive in people who do not have HIV infection—mistakes from human error or mistakes in labeling or reporting are occasionally made.

Further information about the tests and their results is provided in Appendix B, “Understanding Tests for HIV.”

The Prognosis

A standard blood test showing the presence of antibodies to HIV means that HIV itself is also in the blood. Unlike antibodies for other infections, the antibodies for HIV cannot kill the virus. This means that once HIV is in the body, it stays in the body.

There have been occasional reports of individuals with positive tests that subsequently became negative—that is, that the virus was once present and then was somehow eliminated. So far, these reports have nearly always turned out to be wrong: further tests show that once the test is positive, it stays positive.

HIV infection, if left untreated, causes the body’s immune system to gradually weaken. This process takes years or even decades. For years, the person with HIV infection usually feels entirely well and has no symptoms of infection. We measure the progress of HIV infection by pe­riodically counting the immune system cells that HIV infects, called CD4 cells. The normal CD4 count is usually 500 to 1,500. The count gradu­ally declines, and when it reaches less than 200, people are prone to cer­tain complications or opportunistic infections—infections that a healthy person doesn’t get because they are fought off by the immune system. The person is now said to be in the symptomatic stage, or to have AIDS. Studies done before the development of the new drugs indicated that about half the people with positive blood tests for HIV developed AIDS within eight to ten years after being infected, and that after AIDS, peo­ple lived a year or longer. This finding was based on studies of people who became infected with HIV in San Francisco as early as 1978.

By 1996, however, changes in treatments were having a revolution­ary impact on the prognosis. The most important thing to understand is this: we now know that the disease’s progression can be stopped in most people who are getting the right treatment.

The revolution in treatment resulted from three nearly simultane­ous developments in 1995 and 1996. The first development was a series of studies on the virus and how it reproduces. These studies showed that, if untreated, HIV produces billions of new viruses every day in most peo­ple throughout the course of infection. The studies made it clear that in most people, the infection is always active. The studies also made it clear that what was needed was to quell the virus.

The second development was the “viral load” test, a test developed in 1996 to measure the amount of virus in the blood. The test is used to determine a person’s response to the treatments. Within one day of beginning the new treatments, people had eliminated half the total HIV population in their bodies; and by one month, most people had eliminated 99 percent of the virus. So the test is not only a good indi­cator of a person’s response to treatment, it also suggests that person’s prognosis: the larger the amount of virus, the faster the disease pro­gresses.

The third development was the introduction of new drugs. AZT, which has been used since 1987, was the first drug for HIV infection. Between 1991 and 1999, five other HIV drugs in the same class as AZT (ddI, ddC, d4T, 3TC, and ABC) were developed. In late 1995, a second class of drugs, called protease inhibitors or PIs (saquinavir, ritonavir, indinavir, nelfinavir, fosamprenavir, atazanavir, tipranavir, and lopinavir/ ritonavir), was developed, followed by a third class called nonnucleo­side reverse transcriptase inhibitors (or NNRTIs: nevirapine, delavir- dine, and efavirenz). These second and third classes of drugs were more powerful than AZT and its relatives, but they had to be taken in vari­ous combinations to inhibit HIV effectively and prevent HIV from be­coming resistant to them.

How to Avoid Transmitting the Virus

A positive HIV blood test means that the virus is present and may be transmitted to others. Once infected, people remain infectious to others for the rest of their lives.

In most cases, HIV is transmitted to others by sexual contact or by injection drug use. The blood supply has been screened ever since 1985, so the risk of infection from transfusions is now very low. Ex­tensive studies since then of people who knew how they became in­fected show that sex, injection drug use, or transmission from mother to fetus have accounted for 99.8 percent of all cases. Some of the re­maining 0.2 percent of cases (2 in every 1,000 infected people) are health care workers who had needlestick injuries, people who received organ transplants before routine screening of donors, and the rare peo­ple who received infected blood transfusions despite the routine screen­ing of blood.

The point is, it is important for you to know that this virus is not transmitted to others by casual contact—by shaking hands, sharing a toilet, sharing eating utensils, sneezing on others, and the like. Some things about this virus remain mysterious, but the mechanisms of its transmission are now very clear.

The best way to avoid sexual transmission is to abstain from sex. The next best way is to use “safer sex,” that is, use condoms for all genital contact, or have the kind of sexual contact that does not in­volve transferring semen, vaginal fluids, or blood (including menstrual blood) from one person’s body into another’s. Women with HIV should think carefully through the issues of getting pregnant because of the risk of transmitting the virus to the fetus.

To be extra cautious, avoid sharing toothbrushes and razors. It is also necessary to avoid donating blood, body organs, semen, or other body tissue or fluids. Anyone with HIV infection who has a universal donor card for organ transplantation should destroy this card.

Preventing transmission of HIV is discussed more thoroughly in chapter 2.

Whom to Notify

People with HIV infection have an ethical and, in many places, a legal requirement to notify people whom they may have exposed to HIV. The point of notification is to get these people tested so they can be coun­seled to prevent further transmission and so they can get the health care that is now life-saving.

Notification can be done directly—you tell the person yourself—or by the contact services of some state or local health departments that no­tify the person at risk without identifying the source of exposure.

People with HIV infection should notify anyone with whom they have had nonsafe sex (that is, sex without a condom, or sex that involved exchange of semen, vaginal fluids, or blood, including menstrual blood) and with whom they have shared needles or works. This applies to past as well as present and future relationships.

For past relationships, the major problem is knowing how far back in time to go. Most people with HIV do not know when they became in­fected. Since the infection may be silent for a long time, they may con­ceivably have been placing others at risk for several years. For practical purposes, most authorities recommend notifying anyone with whom you’ve had a sexual relationship for the past one or two years.

People who may have been exposed might also want to ask a physi­cian about the probability of infection, the necessity for medical evalu­ation beyond simple testing for HIV, and the desirability of subsequent testing (see Appendix B, “Understanding Tests for HIV”). It may be re­assuring to know that the virus is not easily transmitted. We know the probabilities of transmission from surveys of discordant couples, cou­ples in which one is infected with HIV and the other is not. The risk of infection without use of condoms is actually less than 1 in 100 for a sin­gle sexual contact. The same studies show that even for those who have had regular sexual contact for five years, the risk of infection is less than 50 percent. This includes wives of men with hemophilia, who have in­fection rates of 10 to 30 percent, despite having had unprotected sex for years. Similar studies have not yet been done for gay men; the risks are probably higher.

In some states, notification of HIV infection is required by law. In New York State, for example, physicians are required to identify the con­tacts of their patients with newly detected HIV infection; state authori­ties will then notify the contacts that they have been placed at risk, with­out disclosing the source of the risk. Authorities will not notify contacts when such notification is likely to cause domestic violence. This New York law obviously requires the patient to cooperate in identifying con­tacts. In most states, the role of the physician in notifying people placed at risk by an infected patient is less clear.

There is debate about all this. On the one hand, the patient-physician relationship is privileged, or private. On the other, the physician has an obligation to society. A legal precedent was established with the case of Tarasoff v. Regents of the University of California, in which a psychol­ogist who learned of a patient’s intent to murder a young woman was held liable for not taking appropriate steps to protect her. This decision established that the physician has what is called a “duty to warn” un­suspecting people whose behavior puts them at risk. As a result, the physician will usually advise a patient to notify people who have been and continue to be placed at risk of infection. If the patient is unwilling to do this, the physician may have the authority and even the responsi­bility to do it, either directly or through public health authorities.

Abiding by these obligations and notifying others of the possibility of HIV infection is extremely difficult. People who simply cannot do it are advised to discuss their concerns with their physicians. They might also benefit from consulting a psychiatrist or a psychologist, or by par­ticipating in support groups, or by talking to friends and relatives. One option is to use a third party, a mutual friend, or a physician (see “Telling about the Diagnosis” in this chapter).

Deciding Whom Else to Tell

Beyond those you must inform, deciding whom to tell and whom not to tell is difficult. For someone who is newly diagnosed, the first advice is to limit the number of people. Tell those who need to know: physicians, dentists, and anyone who has been or will be exposed by sexual contact or shared needles. If you are a health care worker, you should follow lo­cal and organizational guidelines about notifying a superior or a med­ical adviser where you work.

No one else needs to know. Almost all the people who had HIV in­fection in the early 1980s could recount a seemingly endless array of war stories about how their medical care, employment, and relationships with friends and relatives changed when their diagnoses became known. Since then, society’s attitude has become more informed and the war sto­ries have accordingly become less frequent. The stories are, however, by no means gone. So until you have sorted out your own reactions to the diagnosis, and have thought through which people you want to tell and what you want to tell them, you are probably better off not saying any­thing. Put it off for a while. Limit those you tell.

Finding a Stable and Congenial Source of Medical Care

Everyone with HIV infection requires regular medical care. Medicine cannot yet cure HIV infection, but it can treat it. And the treatments can allow you a nearly normal life for a very long time. (Chapter 6 discusses each complication by symptom; chapter 7 advises how to choose physi­cians.) Select a physician or a group of physicians or a clinic that you find congenial, that you will continue to visit, and that you can trust. HIV infection is the most rapidly moving field in medicine and requires a physician with experience in and commitment to treating HIV infec­tion.

The best way to find that good HIV physician is through referral by other physicians. Most physicians don’t do HIV care; in fact, about 3,000 of the 600,000 physicians in the United States (0.5 percent) pro­vide the care for 80 percent of the people treated for HIV infection. Good HIV physicians follow the journals reporting HIV studies, know the most recent guidelines, go to at least one national conference each year, and have at least fifty patients with HIV infection. So before choosing an HIV physician, ask how many patients with HIV infection the physi­cian has, and whether he or she attends the national HIV conferences. Other physicians in the community usually know who the HIV physi­cians are. Other patients might be helpful, but be careful, because pa­tients’ perceptions of competence are often driven by personality com­patibilities. Be leery of advertised medical services and of anyone who claims cures.

The Decision to Become Pregnant

Women who have HIV and then become pregnant can transmit this virus to their babies. Women who become infected with HIV while they are pregnant can also transmit the virus to their babies. Without treatment, the risk of transmission is around 20 percent to 35 percent, meaning that about one-quarter of the babies born to mothers with HIV will also have the virus. A woman who becomes infected with HIV after she has had a baby has less to worry about. Any woman with HIV infection, regard­less of when she became infected, must not breast-feed her baby.

HIV infection is different in children than in adults. In children, the disease, unless treated, progresses more rapidly. Most children with HIV infection will have medical problems by age 4 or 5 years, although some children with HIV remain well until they are 10 or 12 years old. Babies and children with HIV infection clearly benefit from treatment, though no one knows much about whether the new drugs, such as protease in­hibitors, will also benefit them.

We once thought that women with HIV infection should not become pregnant because the baby had a high risk of being infected, of living for only a few years, or of losing its mother to AIDS. We don’t think that any more. Current statistics are much different: the risk of the baby be­coming infected is only 2 to 5 percent, and even if the baby is infected, his or her prognosis is much better; and the mother’s prognosis, though hard to predict in the long run, is quite good.

For the woman who has HIV infection, the decision to become preg­nant should be based on your viral load, how far along you are in the disease, and how willing or able you are to take medications. Women who respond well to treatment have a good long-term prognosis and are unlikely to transmit HIV to their babies. The key issue here is how well the virus is being controlled. If your viral load is low or undetectable, meaning less than 50, the risk of transmission to the baby is nil. If the viral load is less than 1,000, the risk of transmission is still low, less than 2 percent. If the viral load is higher than 1,000, delivering the baby by cesarean section will decrease the risk of transmission to about 2 per­cent. All these numbers assume that you do not breast-feed.

For the woman who does not have HIV infection but whose sex partner does, the issue of pregnancy is difficult. Getting pregnant re­quires having unprotected sex, which of course risks transmitting HIV. Artificial insemination is a solution but only if the sperm donor is an­other, uninfected man. Sperm-washing infected sperm has been done in some countries with reported success, but the process really isn’t ade­quately tested. It appears to be effective, but the services must be done on-site, the procedure is very expensive, and generally the infected man must have no detectable virus. Those interested in sperm-washing should obtain data from clinics where it is done; such data is especially reliable in the United States because of the legal requirements for the consent process.

If a woman has already given birth without prior testing and subse­quently learns she has HIV, she should have all her children of preschool age tested. We now know of some older children with HIV infection who have been relatively healthy for up to ten years. So it may be appropri­ate to have the reassurance of a negative blood test.