Introduction: About This Book

• Medical issues you need to understand first

• Psychological and social issues

• How we know what we know about HIV infection

• About this book

HIV infection puts extraordinary stresses on people’s lives.

This book will cover the parts of people’s lives that HIV infection affects: their physical health, their emotional health and social difficul­ties, and their financial and legal problems. Sometimes these issues will be kept separate—one chapter is only about medical care, one only about financial and legal problems. Sometimes the issues will be merged — the chapter on what to do when first diagnosed covers both medical and emotional issues.

Medical Issues You Need to Understand First

A few things you need to know right away. Some of these things may not be uppermost in your mind, but you need to know them to protect yourself and others. All these things are discussed in more detail in chap­ter 1; we include them in this introduction to alert you to their necessity.

1. What HIV infection and AIDS are: AIDS stands for acquired im­mune deficiency syndrome. Acquired means that AIDS is not inher­ited (many diseases of immune deficiency are inherited) but acquired from some substance or microbe outside the body. Immune defi­ciency means that the immune system has been weakened. A syn­drome is not so much a disease as it is a collection of symptoms. In the case of AIDS, the syndrome is evidence of infection by the AIDS virus and either a complication that results from immune deficiency or a test of immune function that indicates susceptibility to such conditions.

AIDS is often used incorrectly as a catch-all term for infection with the AIDS virus. The name of the AIDS virus is HIV, the human immunodeficiency virus, so called because HIV infects the immune system and weakens it.

AIDS is only one stage of a whole series of stages in HIV infec­tion. People with HIV infection do not necessarily have AIDS, and if they are taking drugs against HIV, they may possibly never get it.

When people are first infected with HIV, they show no obvious symptoms for a long period called the asymptomatic period. If they are not taking drugs against HIV, they will eventually show symp­toms of a weakened immune system, and then are said to be in the symptomatic period. When the immune system is weakened se­verely, people begin having certain specific infections and tumors called opportunists or AIDS-defining diagnoses (see chapter 6). In this book, we simply call them complications. Though AIDS was once defined by the presence of certain complications, it is now de­fined as HIV infection plus these complications, or HIV infection plus a CD4 count of 200 or less. The CD4 count is a measure of the robustness of the immune system. A count of 200 or less means the body is more susceptible to a complication.

2. What the prognosis is: As far as we know, it’s good. It’s certainly drastically better than it was ten years ago. Old studies showed that without any treatment whatsoever, half of those with HIV infection would develop AIDS within eight to ten years after becoming in­fected, and most of the rest would have laboratory evidence of weakened immune systems. The same studies showed that people lived about three and a half years after they were diagnosed with AIDS. These studies were done before any treatment was available.

We now know that with treatment, the whole course of the dis­ease can be slowed down or stopped, and that the statistics from these early studies do not mean much. We also know that new drugs and new treatments are being developed so fast that it is not possi­ble to predict the average time between infection with HIV and the development of AIDS; we know only that the time is longer and may be indefinitely long.

Most people with HIV infection, if untreated, will eventually de­velop AIDS. Some people progress more quickly to the AIDS stage; others take longer; and some take even longer. This latter group is sometimes called “long-term survivors” or “chronic non- progressors.” Medical studies now show that about 2 percent of people with HIV infection will have no symptoms for at least twenty years, even without treatment.

With treatment, that percentage goes much higher; many people seem likely to have good health indefinitely. Although we still have no proof, many (and maybe most) people with HIV infection who are treated aggressively should have a chronic and manageable dis­ease, managed the way diabetes and hypertension are. As of 2005, medical researchers estimated that people currently being treated would live, on average, fifteen more years. We assume that contin­ued progress in research will add substantially to this number.

3. What HAART is: Highly active antiretroviral therapy (HAART) is the term used for the cocktail of drugs you take to treat HIV in­fection. Because these drugs inhibit the growth of HIV, which is a retrovirus, they are also called antiretroviral agents. HAART is good news and bad news: good news because the drugs are so powerful, killing 90 percent of all HIV in the body within one week and 99 percent within one month; bad news because they cause side effects and require close adherence to what can be a demanding treatment schedule. These drugs are also unforgiving: if you miss doses of a drug, you risk having your HIV become resistant to that drug, and once HIV becomes resistant to a drug or class of drugs, it stays re­sistant forever.

4. When you can transmit the virus to others: You must consider yourself infectious to others from the time you are infected. Once HIV is in a person’s body, it is impossible to become “uninfected.” It is possible but unlikely that new drugs not yet available will even­tually eliminate the virus. But with the drugs currently available, such cures haven’t happened.

5. How to avoid transmitting the virus (see chapter 2):

• Have no sex, or have safe sex or safer sex. Safe sex means sex with no exchange of semen, vaginal fluids, or blood, including menstrual blood; safer sex means intercourse (oral, vaginal, or anal) with a condom.

• If you inject drugs, try to stop. If you cannot, stop sharing needles and works (spoons, cotton, syringes). Some authorities suggest rins­ing the needles and works with chlorine bleach after every use, but we don’t know whether this helps.

• Do not donate blood, body organs, semen, or other body tissue or fluids.

• To be extra cautious about transmitting HIV through blood, avoid sharing toothbrushes and razors.

• Casual contact—shaking hands, sharing a toilet, living with someone, playing contact sports, sharing eating utensils, sneezing on others—does not transmit the virus.

6. Whom you should notify: You should notify anyone you may have exposed to the virus. That includes anyone with whom you have had unprotected sex (meaning sex without condoms) or with whom you have shared needles or works. If you know when you were infected, tell anyone you may have exposed since then. If you do not know (though no one knows absolutely how far back in time you should go), the common recommendation is to notify anyone you may have exposed in the last one or two years. One reason to do this is that people you may have infected need to be counseled so that they don’t themselves unknowingly transmit the virus to oth­ers. Another reason is that people you may have infected need health care. If you don’t wish to tell them directly, most city and state health departments will tell for you; they will notify the person that he or she may have been exposed and should be tested, but they will not identify you as the source.

You should also tell your physician and dentist of the diagnosis. Important: Other than sex or needle-sharing partners, and your physician and dentist, you need not tell anyone else. An exception: health care workers who do invasive procedures like surgery may need to notify their supervisors or employers according to local pol­icy, which varies in different institutions.

7. Whether to get medical help: Everyone with HIV infection re­quires regular medical evaluation. In 1987, when the introduction of AZT offered extended life, medical help was important. In early 1996, with the introduction of protease inhibitors, it became criti­cal. Statistics in the United States indicate that about one-third of people with HIV infection do not know they have it, or they know it and never seek care. This is tragic, because treatment offers health.

Psychological and Social Issues

People affected by HIV infection face greater emotional strain than most people ever do. Furthermore, many face it at an unconscionably young age. Those affected by the disease are shocked or angry or depressed or afraid or guilty or confused or have any number of these emotions at once. They worry about revealing the diagnosis, about expressing sexu­ality, about relations with the people they love. They worry about the increasingly complicated schedules for taking medication, about the medications’ side effects, and about the consequences of missing doses. They worry about the uncertainty of the future. And they worry about the philosophical question common to everyone alive: What is the pur­pose of my life? The rest of society, not directly affected by the disease, still reacts with fear, prejudice, and pity, making those affected by the disease also feel like outcasts, isolated and lonely.

With time, people come to deal with these worries and emotions, us­ing the same strategies that have worked for them in all their previous periods of difficulty. Their strategies for dealing with their problems are usually effective and usually different.

Mental health professionals who deal with people affected by HIV infection recommend a few additional guidelines. The first is to protect your physical health. That includes eating healthful foods, cutting al­cohol and smoking down or out, and exercising. Before 1996, when HIV infection still progressed inevitably downhill, these changes in lifestyle were not crucial. Now they are. With the treatments, many peo­ple with HIV infection have few or no problems with the virus but suf­fer instead from the consequences of smoking, hypertension, diabetes, and heart disease—all problems affected by behavior, exercise, and diet. In addition, protect the health of others: practice safer sex; don’t share needles; avoid passing blood, semen, or vaginal fluids to another person.

The second guideline is to cultivate emotional health. Take care of yourself and be around people who like you. Try to see accurately who you are and what you feel. Find what’s necessary to maintain your emo­tional equilibrium. Enlist your sources of support and try to communi­cate with them truthfully and thoughtfully. Many people find solace in a support group. If a problem seems too severe or does not go away, or if you are seriously considering suicide, or if you simply want someone to whom you can talk freely, see a mental health professional. Therapy may concentrate on the overwhelming problems people must face and feel they cannot solve: How can I face rejection? How can I deal with my anger? Can I come to feel less guilt? Are there ways to have sex with­out hurting myself or anyone else? Why me? Why now? What will hap­pen next? What will happen to my kids? My parents? The people I love? Am I a good person?

The third guideline is to take control of your life. In spite of much that is unavoidable or unchangeable, the decisions about your life are yours to make. Consider and accept the consequences of your actions. Once that is done, you know what’s best for you. You are in charge.

Satisfy these and any other principles you hold yourself to. Then trust yourself and live the way you feel you must. People affected by HIV infection say the same thing this way: be kind to yourself and others, come to terms with yourself, trust yourself.

How We Know What We Know

about HIV Infection

People whose lives are so drastically affected by HIV infection naturally have questions about the disease. But because it is a new disease, med­ical scientists still have much to learn about its effects on the body and how to treat those effects. What medical scientists know depends on what kinds of studies they have done.

One kind of study examines virology, or the virus itself: what genes make it up, how it reproduces, how it attaches to cells, what effect it has on the cell. These studies will ultimately suggest new drugs for control­ling or destroying the virus. Another kind of study, called a clinical trial, tests drugs to see whether they are effective both against HIV and against the infections that accompany a weakened immune system.

The third kind of study is epidemiological; that is, it charts the course of HIV infection through whole populations. In the early 1980s, epidemiological studies were responsible for identifying and defining the disease and for finding out how the disease was transmitted, even before the virus was discovered. Currently, a federal agency, the Centers for Dis­ease Control and Prevention, or CDC, does epidemiological studies that keep track of the spread of the infection. From those studies, we now know the number of cases of AIDS, the populations that are affected, the way the virus is transmitted, the average course of the disease, the most common complications, and the average life expectancy.

To further help epidemiologists keep track of it, AIDS was made a “reportable disease,” meaning that health care providers are required to report, by name, all people with AIDS to their state’s department of health. (HIV infection is reportable by name in some states but not in others.) Ultimately, the states report these cases to the CDC, but not by name. As a consequence, the CDC has excellent information on AIDS. Information on other stages of HIV infection, however, is much more fragmented and incomplete. Only about half the states report everyone with HIV infection, but even these states’ reports are incomplete because most of those infected have never been tested.

In short, the answers to questions about HIV infection are limited by how far medical science has progressed in its studies. Knowledge of how the virus operates in the body depends on the progress made in the virological studies. Knowledge of what drugs are most effective depends on the progress made in the clinical trials. Knowledge of the natural course of the disease in the body depends on the progress made in epi­demiological studies. Information coming out of these studies is dis­cussed throughout this book.

As a result, some questions people have about HIV infection can be answered completely and substantially. Other questions will have an­swers that are, for the present anyway, closer to educated guesses.

About This Book

This book is meant as a reference and a companion. It is unfortunately not a complete guide to living with HIV infection. One subject left out is home nursing care—you can get specific details about this subject from nurses or home health care workers. Another subject omitted is the care of children with AIDS. Both of these topics warrant books of their own. Any other information omitted or dealt with only sketchily is ac­companied by a referral to a reliable source for the information.

This book was not written to be read from start to finish. Read the book in whatever order you please: read one chapter at a time, one sec­tion at a time; read about whatever problems you face now, or about whatever questions you currently want answered; skip chapters or sec­tions and go back to them when you’re ready, or don’t go back to them at all. Each chapter is intended more or less to be read as though it stands alone. As a result, some information gets repeated in several chapters. If the repetition is annoying, please forgive us.

The book discusses emotional and social issues in human voices, that is, in the words of the people affected by the infection. The reason is that many of the ways of dealing with those issues come not only from mental health professionals but also from the people affected by HIV. In some of the following chapters are the voices of eight people: their names are Dean Lombard, June Monroe, Steven Charles, Helen Parks, Alan Madison, Rebecca Wolfe, Edward Carroll, and Lisa Pratt. Together, these people are meant to represent the population of people affected by HIV. They are men and women, have different financial resources, are different ages, have different jobs. Those with HIV have become infected a number of different ways. Some are newly infected; some have lived with the virus a long time. Some are doing well on the drugs, some less well. Though their names and certain characteristics are fictional, what they say is not. In every case, the words are quotes of real people affected by HIV; the quotes are nearly verbatim.

This book is full of medical terms, some of them familiar, some com­plicated and unfamiliar. We explain these terms as they appear. But we also know the reader will not remember every new word or every aspect of its meaning. So at the end of the book is a glossary of all these words, and the reader can refer to it as needed. The glossary includes, among other words, the names of the conditions associated with HIV infection, the tests to diagnose them, and the drugs used to treat them. The drugs usually have two names, the chemical name and (in parentheses) the trade name given by the drug company that discovered it.

And finally, we avoid, where possible, addressing separate groups of readers in separate sections. For the same reason that we avoid separate sections for people with HIV infection and their caregivers, we also avoid having separate sections for women, gay men, or injection drug users. The reason is that most of the issues and problems faced by all these people are the same. Women, gay men, people with hemophilia, transfusion recipients, and injection drug users are surely all concerned about their children. Everyone worries about the legal rights of an un­married partner. Everyone is made unhappy by social isolation. Con­doms should be used during sex regardless of who the partners are. Everyone has an equal chance of responding to treatment, and faces the same challenges of taking the medicines regularly. The prognosis, the laboratory tests, and the complications of the treatments are all the same for everyone.

Some issues, however, are truly unique to one group. Women have medical problems men do not; and they can transmit the virus, through pregnancy and breast-feeding, in ways men cannot. Gay men can face problems because revealing their HIV status can mean also revealing homosexuality; transfusion recipients do not necessarily face a similar problem. Our policy is to discuss issues unique to one group in the sec­tion devoted to those issues. So gynecological problems are in the chap­ter on medical problems; pregnancy and breast-feeding are in the chap­ter on transmitting HIV; problems of talking about homosexuality are in the section on problems with talking about HIV status.

We also avoid separate sections for people with differing levels of virus. For many people, the new combinations of drugs have boosted their immune systems and reduced the numbers of the virus; for other people, the new drugs are less successful; and for still others, the new drugs are, for various reasons, unusable or unavailable. These groups of people have some concerns that differ, and we try to address the differ­ences. But most concerns of most people are similar. Nearly everyone has bouts of anger and times of depression, frets over the future, and wor­ries about the effect of the infection on people they love.

In short, we’re all in this together.