Subject: AIDS is Causing Far More Illness Than the Official Figures Convey Date: Published: 5/30/86 171 lines Source: Wall Street Journal. Copyright Dow Jones & Co. Inc. AIDS is Causing Far More Illness Than the Official Figures Convey --- By Marilyn Chase Staff Reporter of The Wall Street Journal SAN FRANCISCO -- In the shadow of this city's civic center, a ragged encampment of ailing men today marks the 221st day of a vigil. They pitched tents in this cold, grimy square last fall to publicize their plight as uncounted casualties of the AIDS epidemic. They spent the winter in beds covered by plastic sheeting to repel the rain. Now as the spring fog sweeps in, they are still uncounted. They have ARC, or AIDS-related complex. They are infected with the AIDS virus, infectious and sick. But their symptoms don't fit the technical definition of acquired immune deficiency syndrome. Thus they are excluded from the official toll as well as from some benefits, including the instant disability status accorded AIDS sufferers under Social Security. "I would like it to be under one name -- AIDS," says Wesley North, a member of the ARC vigil. The virus has given him meningitis, coughing, night sweats and leg pains so severe they require $40-a-bottle drugs. But such symptoms don't warrant a diagnosis of AIDS. AIDS -- often called a tip-of-the-iceberg phenomenon -- is causing far more real illness than official figures convey. About 21,000 people, mostly homosexual men, have met the technical definition of AIDS, and more than half of those have died. But like an iceberg's unseen bulk, ARC patients like Mr. North outnumber AIDS patients by an estimated five to 10 times. Between 10% and 25% of them are expected to develop full-blown AIDS. An additional one million to two million Americans, also mostly homosexual men, are estimated to be infected with the AIDS virus but as yet have no symptoms. A quarter of these may progress to ARC, according to conservative estimates. "The difference between AIDS and ARC is semantic. It's a construct," says Patricia Christen, a spokeswoman for the San Francisco AIDS foundation. "ARC patients have problems with the amount and speed of benefits, especially social services and counseling. You can prove your disability with ARC, but it takes much longer. Meanwhile the bills are coming due, and you're getting sicker." Official figures are misleading, critics say, for three reasons: the historical definition, based upon doctors' inability to see the full spectrum of the disease five years ago, was drawn too narrowly; the syndrome itself is evolving scores of new forms; and doctors under-report its occurrence out of sympathy or discretion. Even a new classification system for the disease circulated this week by the national Centers for Disease Control, or CDC, still excludes ARC from the total AIDS count. When the epidemic began five years ago, doctors at the CDC defined AIDS as an immune disturbance with certain infections, such as pneumocystis carinni pneumonia (often called pcp pneumonia), or certain malignancies such as Kaposi's Sarcoma, a capillary cancer. Now, as people with the viral infection exhibit a wide range of problems, more and more physicians wonder if the disease has outgrown the definition. "It's like a Chinese menu. You have to have two from each column to qualify," says Jerome Groopman, a doctor at New England Deaconess Hospital in Boston who believes the formula is too restrictive. Clinicians from Boston to San Francisco now realize that AIDS is a hydra-headed complex of diseases, embracing not only the narrow syndrome first described, but many more infections and cancers. Infected people are appearing with tuberculosis, regular pneumonia and hemophilus influenzae (a bacteria that can cause everything from pneumonia to meningitis). Dr. Groopman says he is tracking several new AIDS-linked cancers, including Hodgkin's disease, squamous cell carcinoma of the mouth (a cancer of the lining of the mouth), and adenocarcinoma, "an extraordinarily aggressive glandular cancer that is just ripping through people." Among the most devastating of the uncounted manifestations of AIDS are its neurological diseases: psychosis, seizures, paralysis and neuropathy -- pain in the legs so extreme patients sometimes cannot bear to have their covers moved. David Ho, a doctor at the Massachusetts General Hospital in Boston, has examined 10 cases of neurological disease that failed the technical AIDS definition, including two with "full-blown dementia and death." Donald Abrams, a physician at San Francisco General Hospital, asserts that such individuals may suffer more than people who meet the CDC definition of AIDS. "Some people with Kaposi's Sarcoma have a few purple spots for three years but otherwise feel very well. But I remember another man, hospitalized five or six times...who became demented. We had to ask his lover not to bring him into the clinic anymore because it was too disturbing for the AIDS patients to see him." The man died without a diagnosis of AIDS. "People with neurological disease should qualify," says New England Deaconess's Dr. Groopman. He recalls one patient who was diagnosed as having Lou Gehrig's disease (amyotrophic lateral sclerosis), but who actually had the AIDS virus in his spinal cord. "He became spastic and paraplegic," says Dr. Groopman. "Ultimately he qualified as an AIDS patient by getting pcp pneumonia -- but that was two years after he was disabled." This week, the CDC gave recognition to the wide spectrum of AIDS-related infections by publishing a new four-stage classification system for the disease. The system spans the fevers, swollen glands and mononucleosis-like illness of new exposure, extends through symptom-free but antibody-positive people who are infected, and finally embraces ARC and AIDS. But the narrow definition of AIDS stands unchanged, and CDC doesn't plan to broaden its head count to include ARC. "The spectrum is supposed to include everyone who is infected," says James Curran, head of the center's AIDS Activity. But he adds, "It's important to keep the same, standardized criteria for AIDS that we've had since 1981" to be able to compare data. Additionally, the center notes, ARC is a "moving target," expensive to track and unsuited to neat surveillance. That thinking disturbs some physicians. The new CDC classification, says Dr. Groopman, "is designed to help physicians -- like staging tumors. But the definition of AIDS is still too restrictive. Severe ARC should be reported." Ms. Christen, the spokeswoman for the San Francisco AIDS Foundation, adds that excluding ARC from AIDS also leads to under-reporting the problem and failure to trace routes of transmission. Another reason for the under-count is a tendency by some physicians not to report AIDS cases to the CDC, or to omit AIDS from death certificates. Dr. Groopman says, "Every case I see I report to CDC, but there's enough irrationality around that I don't put AIDS on every death certificate. It could hurt families." Full CDC reporting of the disease, Dr. Groopman says, is "critical to understanding the dimensions of the epidemic -- the costs to society, the loss of life, and the economic impact." The current count and definition, he believes, fails to do that. "Are there 20,000 cases? " he asks. "Well, if that's true, and there are 200 million Americans, some people might say that's no big deal. But if they understand there are 250,000 people with active disease, and another 750,000 to one million cases brewing, then they'll understand we've got to start planning." --- AIDS: Below the Tip of the Iceberg 21,000 AIDS Americans who meet CDC Criteria for AIDS. 100,000* to AIDS-RELATED COMPLEX Americans infected 200,000** with AIDS virus and ill with a disease outside the AIDS category: lymphadenopathy, thrombocytopenia, candidiasis, diarrhea, fever, hairy leukoplakia, dementia, neuropathy, Hodgkin's. 1 million* to INFECTED Healthy Americans with 2 million** antibodies to HTLV-III virus. CDC estimates 5% to 25% will progress to AIDS and 25% to one of the ARC illnesses. Sources: Emergency Medicine Magazine; *CDC; **clinicians' estimates (This article is made available here by Dow Jones Co. for the personal and non-commercial use of callers to this bbs, in the hope that it will be of some help to those who are suffering from the disease and others who are seeking to help them.)