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WHEN FIRST DIAGNOSED: UNDERSTANDING AND COMMUNICATING ABOUT
HIV-REACTING TO THE DIAGNOSIS
Most people react to learning of their diagnosis of HIV infection with acute confusion, shock, and disbelief. Steven Charles is twenty-five years old, and infected by HIV but asymptomatic. He is a gay man who lives alone in an apartment. Steven talks openly about his first reaction: “I got the diagnosis the day after my birthday. I went for the test, hoping to confirm I was negative. When the doctor told me, I ran out of the office and stood in the hall. I didn’t know whether to cry or not. I couldn’t believe it. I didn’t know what my priorities should be. Do you start gearing yourself up to leave the world, or to live?”
Lisa Pratt’s husband, Glen, a sixty-year-old man who had received an infected blood transfusion, would not believe the test results. Like Steven Charles, Lisa’s husband reacted to the diagnosis of HIV infection with shock and disbelief: “He kept saying, ‘Those idiots don’t know what they’re doing.’ He made them test him again and again,” Lisa said later. Some people, because they are gay or use drugs intravenously, have anticipated the diagnosis. In either case, the diagnosis confronts people, usually for the first time, with the possibility of getting sick and dying.
This possibility has no normal place in our lives. No one is ready to hear this news, or to assimilate it all at once: “What do you do with that kind of information,” said Steven Charles, “that you have this kind of disease?” It assaults our plans for the future, the principles by which we make decisions, who we think we are. As a result, people go into shock. Some people continue their lives almost unthinkingly: “For a few days after my diagnosis,” Steven said, “if it wasn’t automatic, it wasn’t getting done.” Others say they “freeze up” or “go on hold”: Lisa said that for a while, “Glen simply quit getting out of bed, quit eating.”
Shock and disbelief are the normal reactions to this diagnosis. So are problems with eating and sleeping. Alan Madison is thirty-five years old, also infected with HIV, is gay, and lives in a condominium with a long-time partner. “I didn’t sleep at first,” said Alan. “It was a lot of emotions for one thirty-six-hour period.”
With shock and trouble eating and sleeping comes an assortment of related reactions. People blame themselves and lose their good opinion of themselves. They are agitated and anxious and entirely preoccupied with the diagnosis. They are depressed, sad, unable to enjoy or take pleasure in things. They isolate themselves: “At first,” said Alan, “I unplugged the phone and said no visitors. I put up roadblocks on purpose.” When people first hear the diagnosis, they lose hope for the future and think about suicide. They are also furious: “My husband stood in our living room, swearing,” said Lisa Pratt. “He yelled, ‘Damn it, damn it, how did I hit odds that small?’”
When they first hear of their diagnosis, people with HIV are frightened by the prospect of sickness and death. Most are confused and don’t know what to expect or how to make plans: Will I be alive in ten years? Will I be alive for my next birthday? Can I eat in a restaurant? Will my partner leave me? Should I stay in my job? Will I live to see a cure? Will I run out of money? How should I behave? What should I feel? How am I different? People close to the person who is newly diagnosed may also be confused: “I didn’t understand what it meant,” said Lisa. “I thought he’d die in six months”.
Though these feelings are terrible, and though they will recur, their acuteness is shortlived. They last from a few weeks to a few months?typically around six weeks. People deal with these feelings the way they have dealt with all other crises in their lives. They use the same skills, the same strategies they always have. “My husband cried when he told me about it,” said Lisa. “I told my husband, ‘Don’t be sorry. I love you. We’ll handle this the way we handle everything else.”
*12/191/2*

Videx (Didanosine)

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WHEN FIRST DIAGNOSED: UNDERSTANDING AND COMMUNICATING ABOUT
HIV-WHAT YOU NEED TO KNOW: WHAT’S AT STAKE IN BECOMING 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. The risk of transmission is around 30 percent to 35 percent, meaning that about one-third 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. Because researchers have been reluctant to do clinical trials (drug studies) with children, physicians know less about treating children. And in children, the disease progresses more rapidly. Most children with HIV infection will have medical problems by age four or five years, although rare children with HIV remain well until they reach eight, nine, or ten years of age.
Because the chances of transmitting HIV to a fetus are high, and because children with HIV have little hope of cure, women with HIV are usually advised to avoid pregnancy. They are counseled to use effective methods of birth control: not only condoms, but also additional kinds of contraception, like the pill. The same applies to women who are having sex with infected men. Nonsafe sex with an infected man can make you pregnant and can expose you to the virus at the same time. The pill will help prevent pregnancy, but will not prevent the transmission of HIV. Condoms are not as fail-safe as the pill for preventing pregnancy, but are a pretty good barrier to the transmission of HIV.
For women who are already pregnant, the consequences of delivering the baby and the option of abortion should be thought out carefully. Women with HIV infection often say that since the chances that the baby will not be infected with HIV are 65 percent or better, they should not consider abortion. But even a healthy baby can be devastated by HIV infection if the mother or father or brother or sister is infected. You must think carefully about who will care for your baby if your own health should worsen. These things are best considered during the first three months of pregnancy; if you want an abortion, this is the time when abortion is safest.
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. Older children who have remained healthy and developed normally are unlikely to have HIV infection, but some mothers will still want the reassurance of a negative blood test.
*11/191/2*

Sustiva (Efavirenz)

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WHEN FIRST DIAGNOSED: UNDERSTANDING AND COMMUNICATING ABOUT
HIV-WHAT YOU NEED TO KNOW: DECIDING WHO ELSE TO TELL AND FINDING A STABLE AND CONGENIAL SOURCE OF MEDICAL CARE
Beyond those you must inform, deciding who and who not to tell is difficult. For someone who is newly diagnosed, the first advice is to limit the number of people. Tell those you must: physicians, dentists, and anyone who has been or will be exposed by sexual contact or shared needle use. If you are a health care worker, you should notify a superior or a medical adviser in the institution where you work.
No one else need know. Almost all the people who had AIDS 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. 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. Early treatments slow the infection down, and people do not get sick as fast. Later treatments ease troublesome symptoms and stop each opportunistic infection. Find a physician or a group of
physicians or a clinic which you find congenial, in which you have trust, and which you will continue to visit.
*10/191/2*

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WHEN FIRST DIAGNOSED: UNDERSTANDING AND COMMUNICATING ABOUT
HIV-WHAT YOU NEED TO KNOW: 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 intravenous drug use. 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.
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 and spermicides for all genital contact, or have the kind of sexual contact that does not involve transferring semen, vaginal fluids, menstrual blood, or blood from one person’s body into another’s. Women with HIV should avoid getting pregnant because of the risk of transmitting the virus to the fetus. The best way for intravenous drug users to avoid transmission is to stop using drugs. If this is impossible, intravenous drug users must absolutely stop sharing needles and works, or must use chlorine bleach to clean the needles and works after every use.
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.
*8/191/2*

Epivir (Lamivudine)

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WHEN FIRST DIAGNOSED: UNDERSTANDING AND COMMUNICATING ABOUT
HIV-WHAT YOU NEED TO KNOW: WHO TO NOTIFY
People with HIV infection have an ethical and, in many places, a legal requirement to notify people they may have exposed to HIV. Those with HIV infection must also tell people with whom they are having the kind of contact that might transmit HIV. These are two of the hardest things someone with HIV infection has to do.
People with HIV infection are obliged to notify anyone they have exposed to the virus. This means anyone with whom they have had non-safe sex (that is, sex without a condom, or sex that involved exchange of body fluids) 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 acquired the infection. 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 all contacts for the past one or two years. This is the absolute minimum.
People who have been exposed should be notified and advised to take the test to find out if they are infected. They 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. It may be at least somewhat reassuring to know that the virus is not easily transmitted. Studies of heterosexual couples show that the risk of infection is estimated to be less than 1 in 100 for a single sexual contact. The same studies show that, even for those who have had regular sexual contact over extended periods, the risk of infection is less than 50 percent. Similar studies have not yet been done for gay men; the risks are probably somewhat higher.
There are two reasons for notifying people you may have exposed to HIV. One is so they can obtain health care and counseling themselves; they will also need to take precautions not to spread the infection further. This is the only way, right now, that the epidemic can be controlled. The other reason for notification is that doing so is probably a legal requirement; depending on where you live, notification may be the law. Though legal requirements vary from state to state, most states now have laws that mandate notification.
Moreover, physicians may be obliged to notify anyone you do not notify. There is debate about 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 Tarasoffv. 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 who are engaged in behavior that 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 appears to have the authority and even the responsibility to do it, either directly or through public health authorities.
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.
Those who remain unable to tell others directly might do it indirectly, through another individual such as a physician. An alternative is for the person or the physician to notify public health authorities, who will then make the necessary notification. Neither physicians nor public health authorities have to identify the source of their information. The person who may be exposed is simply told of the possibility of exposure without ever being told the specific source. Any of these alternatives is acceptable. The important thing is for the person exposed to be notified, tested, and counseled?and as soon as possible.
*9/191/2*

Combivir (Lamivudine, Zidovudine)

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WHEN FIRST DIAGNOSED: UNDERSTANDING AND COMMUNICATING ABOUT
HIV-WHAT YOU NEED TO KNOW: THE PROGNOSIS
A blood test that shows 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 blood, it will always be in the blood.
There have been occasional reports of individuals with positive tests that subsequently became negative?in other words, reports indicate that the virus was once present and then was somehow eliminated. So far, these reports have nearly always turned out to be the result of errors in the test. We are aware of possibly three cases of a person who was once infected becoming uninfected. This is disappointing, but it should be faced. People with positive tests should consider themselves infectious to others for the indefinite future.
HIV infection causes the gradual weakening of the body’s immune system. This process takes years or even decades. The person with HIV infection usually feels entirely well and has no symptoms of infection for years. When symptoms of a weakened immune system begin to occur, the person is sometimes said to have AIDS-related complex, or ARC. When the immune system becomes even weaker, certain opportunistic infections?common infections usually fought off by the immune system?appear, and the person is said to have AIDS. HIV infection, ARC, and AIDS.
Current studies indicate that about half the people with positive blood tests for HIV will develop AIDS within eight to ten years after infection takes place, and that people diagnosed with AIDS live a year or longer. This is an estimate based on studies of people who became
infected with HIV in San Francisco as early as 1978. Some of these people who were studied have weakened immune systems but remain well ten or twelve years later. So no one knows how long any individual person with HIV will take to develop AIDS; the upper limit is clearly well over ten years.
The most important thing to understand is this: what we know about the progression of the whole course of HIV infection comes from those studies, and those studies were done when no one knew much about the benefits of therapy.
We do not understand all the factors that govern how fast HIV infection progresses or how fast the immune system weakens or how fast AIDS itself progresses. But paying attention to wellness?good nutrition, exercise, regular medical check-ups?apparently helps to slow down the progression of the course of HIV infection through the body.
We do know that people with AIDS live substantially longer than they once did, and that current treatments delay the average time between initial infection with HIV and the development of AIDS. We think medical treatment will eventually prevent HIV infection from leading almost inevitably to AIDS. We think HIV infection will become a chronic and manageable disease. Like diabetes, HIV infection will be a persistent medical problem that will always need attention, but it will not drastically interfere with quality or length of life. With early detection and new treatments, we believe, many people will be able to count on an indefinite period of good health.
*7/191/2*