Silent Epidemic Understates the Menace of AIDS

When Bertha Rose, a 69-year-old retired owner of a family grocery in New England, died three weeks ago, the AIDS virus had claimed another life--but her death never appeared in the nationwide AIDS statistics.

During open-heart surgery in 1985, she had received 17 pints of blood in a transfusion contaminated with the virus. After the operation, she began to suffer from severe fatigue and malaise. She lost her appetite. Her weight dropped precipitously. She simply wasted away.

Officially, Bertha Rose did not have acquired immune deficiency syndrome. Although she had the virus, her symptoms did not fit the Public Health Service’s strict definition of AIDS. Her disease is classified as AIDS-Related Complex, or ARC.

Impact Is the Same

“But she just as surely died of this agent as if she had died of AIDS,” said Dr. Robert T. Schooley, one of the physicians who treated Rose at Massachusetts General Hospital in Boston. “For her, the impact was the same.”

Not only is the plight of ARC patients such as Rose largely ignored in the outpouring of concern over AIDS, many health officials acknowledge that the distinction between AIDS and ARC has bred an underestimation of the AIDS menace.

“This is, in a way, the silent or forgotten epidemic,” said Dr. James Allen, assistant director for medical science for the AIDS program at the federal Centers for Disease Control.

Last Monday, the Public Health Service reported there were 27,519 known cases of AIDS in the United States, of which 15,445 had resulted in death. Yet public health officials agree that the figures are misleading--that thousands more are sick and that the AIDS virus certainly has taken many more lives.

No study has been conducted on mortality associated with ARC, and none is currently planned. No one is certain how many people have contracted ARC. Estimates range from 100,000 cases to more than 200,000 in the United States--perhaps as many as 10 times the known number of AIDS cases.

ARC is frequently called a “milder” form of AIDS or a “lesser” AIDS--designations that are not really accurate. Often, ARC patients become just as ill or disabled as those who suffer from AIDS. Frequently, ARC patients go on to develop full-blown AIDS, but, like Bertha Rose, they can also die from ARC alone.

“I don’t think we ever got into the distinction of ‘this is what I have,’ ” said Linda Parsons, Rose’s daughter. “Call it AIDS, call it ARC--it’s the same thing: ‘It’s hell. It hurts. Why me?’ ”

Patients Live in Limbo

ARC patients have problems different from those suffered by individuals classified as having AIDS. Although they often encounter the same stigmatization as AIDS patients, some have been denied health or disability benefits because they do not have “genuine” AIDS. Moreover, individuals with ARC--because their prognosis is so much more uncertain than that of AIDS patients--often find themselves existing in a kind of twilight zone.

“It’s an emotional roller coaster,” said a Los Angeles man who has had ARC for four years. “How many days does it go on without resolution? You’re going to live, you’re not going to live.”

AIDS destroys the body’s immune system so that it is powerless against certain cancers and infections that rarely affect other individuals. The virus can also invade the central nervous system and cause severe neurological disorders.

It is transmitted through anal and vaginal sexual intercourse and through the sharing of unsterilized hypodermic needles. Women can pass it to their unborn children. As in the case of Bertha Rose, the virus has been spread through transfusion of contaminated blood or blood products, although a blood-screening procedure begun last year has since made that risk slight.

In the United States, AIDS primarily has afflicted homosexual and bisexual men, intravenous drug users and their sexual partners.

Definition of AIDS

AIDS is defined, for national reporting purposes, by the opportunistic diseases that commonly strike those with seriously damaged immune systems. These include, among others, pneumocystis carinii pneumonia, a respiratory infection caused by a parasite, and Kaposi’s sarcoma, a capillary form of cancer.

ARC, on the other hand, can involve many other symptoms, some of which are also common to other diseases. These include swollen lymph nodes, extreme fatigue, fever, drenching night sweats, diarrhea, serious weight loss and dementia.

“Eighty percent of the time, I feel like I’m recovering from the flu or just coming down with it,” said the Los Angeles ARC patient. “I have not been hospitalized, but I’ve missed work. I’ve had fatigue anywhere from minor to gross--sometimes I’ve been compelled to lie under my desk and take naps. Once I was discovered by the head of the department because my feet were sticking out.”

The CDC established the AIDS definition shortly after the disease was first identified in 1981. Scientists had not yet discovered the AIDS virus, nor did they understand that it could cause a wide range of symptoms. The definition was for the purpose of surveillance only--the process by which state health agencies collect data on public health problems and report back to the Atlanta-based CDC.

The CDC kept its AIDS definition even after discovery of the AIDS virus. Dr. Sam Broder, who treats AIDS and ARC patients in the experimental AIDS drug program at the National Cancer Institute, said: “The virus that causes the whole problem is mightily unimpressed by how we try to categorize the consequences of infection by it.”

Health officials felt that a narrow definition was the only way to track the disease in an orderly and reliable fashion. “The more general you make your surveillance program, the greater the chance you dilute the effort and the less likely you are to have complete reporting,” said the CDC’s Allen.

Yet federal health officials acknowledge that the reporting system has created a public misperception of the epidemic. “It’s an important point to make that people with ARC probably have been overlooked,” said Dr. Harold Jaffe, chief of the epidemiology section of CDC’s AIDS program.

Walter Dowdle, CDC’s AIDS director and head of its Center for Infectious Diseases, said that the CDC made it clear from the outset that its AIDS definition was for statistical purposes only.

“We have always recognized that there are, indeed, people out there who are ill and who do not fit the surveillance definition--and that this should be taken into account in health care planning and, more importantly, in whether they qualify for health care benefits,” he said.

For surveillance, Dowdle added, “what you want is a dependable set of figures. You can only generate them through something that can be standardized. AIDS can be standardized and validated. ARC is much more nebulous, although introduction of the antibody test has changed that somewhat.”

That test, which became available in April, 1985, determines if an individual has been exposed to the AIDS virus, and it can often confirm an otherwise questionable ARC diagnosis. Before 1985, an individual suffering from extreme fatigue and swollen lymph nodes, for example, could not be said with certainty to have ARC, because these are also symptoms of other diseases, such as mononucleosis.

Allen said that CDC would be “delighted” if states would begin collecting ARC data, because scientists have a better understanding of the consequences of AIDS infection than they did five years ago.

“The more information we have, the better we can use it,” he said, adding: “We have asked some states to look at setting up programs for ARC surveillance, and we’ve let them know there is seed money available to do this.”

Yet national reporting of ARC cases and deaths is considered unlikely. Such a decision, which would have to be made by all the state public health agencies, would require more widespread use of the test for exposure to the AIDS virus, and homosexual and civil rights groups have opposed using that test for reporting purposes of any kind.

Despite assurances of confidentiality, they fear that the reporting of test results could lead to increased discrimination against those who test positive.

New Guidelines Out

Meanwhile, the CDC recently issued new guidelines explaining the full range of AIDS infection--including an extensive outline of ARC symptoms--in an effort to increase awareness within the public health community and to ensure that ARC patients are not denied medical benefits in the absence of an AIDS diagnosis. The document describes every known manifestation of the AIDS virus, including persistently swollen lymph nodes, fever, weight loss, neurological disease, infections and cancers.

“The hope was to clarify some of the vagaries of the term ‘ARC’ in and of itself,” said Dr. Donald Abrams, assistant director of the AIDS clinic at San Francisco General Hospital, who helped write the guidelines.

Part of the problem, according to Schooley of Massachusetts General Hospital, is that physicians who care for AIDS patients all the time “may focus more on someone who is in the hospital with pneumocystis than on someone who comes in and says: ‘I haven’t been feeling well for four months.’ ” ARC patients, said Schooley, who has seen about a dozen people die of that disease, “tend to get lost in the shuffle.”

Abrams, of San Francisco General Hospital, one of the first to recognize and identify ARC, has followed the cases of 200 men with ARC since 1981.

Two Diseases Converge

“My early hope and belief was that ARC was an alternate response to the virus, but follow-up has led me to be somewhat more concerned,” he said. Now, he said, he believes that “a larger number of patients will be progressing on to develop full-blown AIDS and life-threatening disease.”

During the first few years, he said, there was a low rate of progression from ARC to AIDS. “Now, in the fifth year, we’re seeing more of these patients going on to develop bona fide AIDS,” he said. “In general, most of the studies now suggest that anywhere from 20% to 40% or even 50% of ARC patients are going on to develop AIDS. It’s a wide range--and it’s all anecdotal.”

There are no reliable figures on ARC mortality, Abrams said, but it is accepted among AIDS experts that some patients die of the AIDS virus without ever developing the symptoms that constitute AIDS. He estimated that “perhaps less than 5% of people who die with (AIDS virus) infection are dying of severe ARC.”