Overview: Pathology and Treatment
As a syndrome rather than a single distinct disease, AIDS encompasses a number of distinct forms of pathology (illness).
Most AIDS-related pathologies are caused by cancers or by opportunistic infections by bacteria, viruses, fungi, protozoa, or other microbes that the body cannot combat because HIV has so seriously damaged the immune system.
Other AIDS-related pathologies result from the direct infection by HIV of cells in the nervous or digestive systems. Still other medical conditions are the undesirable side effects of the powerful toxic drugs used to combat HIV and its associated illnesses.
Some, but not all, of the pathologies associated with HIV/AIDS are officially recognized as AIDS-defining illnesses, which means that when they occur in a person with HIV, that individual then has a formal diagnosis of AIDS. A diagnosis of AIDS can also be made on the basis of a low count of CD4+ cells, according to criteria used in the United States.
Treatment for HIV/AIDS has three main dimensions: attacking the virus itself, strengthening the immune system, and controlling AIDS-related cancers and opportunistic infections. There have been significant advances in all three types of treatment since the start of the epidemic.
As of 1997, there is no proven "cure" for AIDS, in the sense of a single treatment that could eliminate HIV from the human body or reverse the damage done by HIV to the immune system. There is also no effective vaccine to prevent new infections.
Coverage in the Encyclopedia
The Pathology entries cover the various types of HIV-related illnesses, including those that are and are not AIDS-defining. Many of the conditions that are AIDS-defining illnesses have their own entries or are cross-referenced to a generic entry in which several related conditions are discussed (such as enteric diseases and fungal infections). Typically, the treatment of any given form of pathology is briefly discussed in the entry that covers that illness.
A distinct subfield of illness relates to the damaging psychological impact of HIV and AIDS, which requires specialized treatment. While certain types of psychological reaction can be considered normal, rather than pathological, responses to life stress, they are included in this section because they can be detrimental to overall mental health.
The Treatment entries review the wide range of types of treatment, both conventional and unconventional. Some treatments, notably antiviral medications and vaccines, are designed to target HIV itself. Other treatments seek to boost the immune system to minimize or eliminate the effects of HIV. In addition, these entries include information about the means by which treatments are developed and administered.
Entries on Physical Pathologies
|AIDS, Case Definition of|
AIDS, Pathogenesis of
AIDS-Related Complex (ARC)
Kaposi's Sarcoma (KS)
Long-Term Survivors and Non-Progressors
|Lymphoid Interstitial Pneumonia (LIP)|
Mycobacterium avium Complex
Nervous System, Central
Nervous System, Peripheral
Pneumocystis carinii Pneumonia (PCP)
Progressive Multifocal Leukoencephalopathy (PML)
Entries on Mental Health
Death and Dying
|Suicide and Euthanasia|
Entries on Treatment
Complementary and Alternative Medicine
Fraud and Quackery
Side Effects and Adverse Reactions
Vitamins and Minerals
Water and Food Safety
Perspectives on the AIDS Epidemic: Pathology and Treatment
Fighting for Our Lives: AIDS Treatment Activism
Imagine the pain and anguish of being a person with AIDS (PWA) and of knowing early test results of promising new therapies, only to be told: "Sorry, this drug is not available yet." Early in the AIDS crisis, patients were forced to wait for years and years for the system to approve even the most marginally effective HIV drug, azidothymidine (AZT). A sense of tragedy and outrage grew from the spectacle of friends and lovers dying while promising results about the latest breakthroughs spread instantly through an electronic rumor mill.
AIDS treatment was, and still is, a battle both against the virus and against bureaucracy. In the early years, there was no medical triage, but rather the opposite: the drug trial system weeded out the sick, opting instead to test the latest drugs only on the healthy. The drug manufacturers decided it would be easier to keep the well healthy rather than to honor medicine's traditional goal of healing the sick.
From the outrage felt by PWAs there grew a movement for change. Early on, groups of gay men formed support systems and information networks. Everyone working in these areas knew that two identical patients with identical maladies could have completely different outcomes; one might live and one might die based solely on what the patient and doctor knew at the time. By the end of the 1980s, new treatment solutions were at hand for life-threatening illnesses, but they remained blocked by lack of knowledge and, even more so, by lack of access.
Many PWAs and their friends decided that they were no longer going to sit back and do nothing. Project Inform, the Treatment Action Group, and certain chapters of ACT UP such as New York, Golden Gate (in San Francisco), and Philadelphia nurtured a new breed of activism: treatment activism. Some treatment activists set out to infiltrate the research system and the U.S. Food and Drug Administration (FDA). Others preferred to stay on the outside, agitating with street theater designed to generate media coverage.
At first, the system would not yield: how could patients possibly know as much as doctors? But in time, treatment activists gained a voice in the clinical trials networks, formed advisory boards at several major research institutes, and even attended FDA drug advisory panels. A system that once took seven to 10 years to approve a drug pared down that time to four years or less. Thanks to a mutual sense of urgency, there are more than a dozen new therapies on the shelves. New research and drug development are fueled by a lucrative market, and where new drugs cannot meet a need quickly enough, underground treatments help the savvy survive. Indeed, many owe their lives to the underground buyers' clubs, which were formed to circumvent government bureaucracy.
PWAs and their friends have also taken hold of complex research problems. For instance, the Immune Based Therapies Think Tank was begun in San Francisco to generate new protocols and collaboration toward restoring battered immune systems. Setting an amazing historical precedent, the sick, whom the system had left to die, found a way to catalyze some of the most aggressive immunology research of the past 50 years. The think tank turned out concepts and protocols concerning cell therapy, gene therapy, and cytokine administration. Even more, it forced collaboration between researchers, overcoming one of the most damning obstacles to AIDS research: infighting and petty feuds between scientists. Finally, after many years, some scientists realized that it was more important to find a cure for AIDS than to publish and get credit for small academic advances.
Individuals with AIDS were told over and over again with certainty that they were going to die. The only way out of the trap was for PWAs to create alternative "certainties" -- that is, to find and establish other reasonable paths that could lead to survival. Most such paths were dead ends, but that did not stop treatment activists. After reaching several such dead ends, the survivors simply developed new strategies, changing the path as they went along. Living a life that required continuously changing treatment strategies may have been difficult, but there was no alternative but death.
For many treatment activists, finding a way to increase and refine treatment options became the prize. Still, uncertainties persisted. How were these new treatments to be used? How could it be ascertained that these drugs worked? What was adequate proof, and who would decide? In the 1990s, incredible debates took place about whether or not it was necessary to speed up or slow down new drug approval. The compromises between treatment activists that eventually emerged as consensus were often a tricky mandate to approve new therapies, even marginal drugs, as quickly as possible while forcing drug companies to improve efficacy data. Fortunately, as far as can be told, no drug has yet been approved that later maimed or killed its users. Yet, this could well have happened -- and there are some who say that AZT could be described as harmful to its users. But for many treatment activists, the prize was worth the risk.
Taking action has become a survival strategy for many long-term survivors of AIDS. Such action must be carefully planned and executed. It is often risky, usually a matter of life and death. The experiences of those who have died, as borne witness to by those who have survived, have proved again and again the treatment activist axiom that "Action = Life."
The Encyclopedia of AIDS: A Social, Political, Cultural, and Scientific Record of the HIV Epidemic, Raymond A. Smith, Editor. Copyright © 1998, Raymond A. Smith. Carried by permission of Fitzroy Dearborn Publishers.
Encyclopedia of AIDS $25 US/832 pp/Illustrated
For more about this book, or to order, click here.