THE CRISIS IN AIDS CARE : To Live and Die In L.A.

KIMON BEAZLIE MANAGED TO REACH his mid-40s retaining a free spirit and unflagging energy. He was a Hollywood costume designer with stocky good looks, almond brown eyes and a penchant for six-day workweeks--a habit that earned him, in good times, as much as $80,000 a year. In off hours, he was an amateur rock climber and a breeder of exotic birds. He wore his hair in a style befitting his Hawaiian descent: a thick dark mane dangling nearly to his waist.

But one night last summer, Beazlie’s life took a sharp turn. He was brushing his teeth when pain stabbed the roof of his mouth--a canker sore, he thought, craning to look. What he found, instead, was something startling: Behind a front tooth hung a bulbous mass the size of a nickel. A second one, nearly identical, hung at the rear of his mouth. Beazlie tilted closer to the mirror, wondering, “Oh, my God, what is that? ‘ “

The discovery--it would turn out to be Kaposi’s sarcoma, a rare skin cancer--thrust Beazlie into the world of AIDS. It would turn his life completely around, shutting off his past as if a steel curtain had clanged down behind him. In failing health, Kimon Beazlie surrendered his job, lost his health insurance and left behind many friends in the movie and television industries.

In a series of jolting events, he found out what it is like to live as an AIDS patient in Los Angeles County. The experience, he learned, just as so many others learn, is a relentless nightmare; it is a bitter story of government snafus and family prejudices, tears and “T cells,” compassion and profound hurt. While one faces death and grasps desperately for time, fighting the medical bureacracy can be almost as difficult and debilitating as the disease. Beazlie is one of thousands who, as the moments of his life slip away, has grown angry and cynical about the underfunded, conservatively administered county system, which is ranked among the worst in the nation at dealing with the AIDS epidemic.

“In Los Angeles, where the numbers (of infected persons) are increasing daily--by enormous leaps--it is startling to see the level of denial or detachment (that the county has shown)” says Dr. June Osborn, chairwoman of the National Commission on AIDS. During special hearings held in Los Angeles earlier this year, Osborn and other commission members castigated county supervisors for what they considered chronic shortfalls in funding and commitment for AIDS programs. “There was a sense that local government was trying to distance itself from the epidemic as if it was somebody else’s problem,”she says.

Already, the countywide death toll from AIDS has reached 5,600. And the future looks worse. According to the county’s estimates, 2,800 patients are now fighting the disease, and that number is expected to climb to 24,000 in three years. A total of 109,000 people in Los Angeles are believed to be infected with the deadly virus; they, too, are living on borrowed time.

Each faces daunting hurdles. The disease is one thing: Acquired immune deficiency syndrome is particularly cruel and pitiless-a dark, ever-deepening tunnel of physical and psychological horrors. The average AIDS patient lives 22 months after diagnosis, but that, like nearly every other aspect of the disease, is unpredictable. The eroded immune system tends to break down under stress, or in reaction to powerful, toxic medications designed to control the virus. AIDS allows any number of infections to hit where the patient is weakest, often creating a grim cycle of illness, recovery and deeper illness.

Moreover, at this time of extreme frailty, the person with AIDS must master the tricky ropes of the public health system. The waiting list for outpatient care at Los Angeles County-USC Medical Center--the hub of the county’s AIDS treatment program--is now three months, long enough for some patients to seriously weaken or even die. The clinic, which treats people who cannot afford private care, was handling 400 patients a month just a few years ago; now the number exceeds 2,000, rendering personalized care all but impossible. A new three-story clinic, with four times the medical examining rooms and a capacity for 3,500 patients, was expected to open this year. But faulty initial designs has delayed the target date to next spring.

Beazlie, who sought health care at County-USC after losing his private insurance, is one of five patients who agreed to share a chronicle of what it is like to deal with life as an AIDS patient in Los Angeles. Each of the five faced different problems and responded with different attitudes, emotions and fears. A maverick among them, who dropped out of treatment against the county’s advice, Beazlie is the most disillusioned.

“The county is a very unfeeling group,” he says matter-of-factly. “You get the impression, after a while, that you’re just delivering a slab of meat for them to do their little thing on.”

As he talks, Beazlie strolls through County-USC’s crowded, windowless outpatient clinic, known as 5P21. The clinic is unique in Los Angeles--the only full-time public clinic for AIDS treatment as well as the county’s center for experimental drug research into the disease. In jeans, a turtleneck shirt and three-day growth of beard, Beazlie moves familiarly through the pale-yellow, hallways.

The halls are as long as 70 yards, lined with wood benches crowded with men awaiting treatment. In their 30s mostly, they form an eerie sight: Hollow-faced, many of them move with the trembling slowness of the elderly. Beazlie strides past them, past an overhead television, and enters a section of hallway blocked by two metal chairs lashed together with a sign: “Restricted area: Only those patients receiving treatment allowed beyond this point.”

Here, on Thursdays, Kaposi’s sarcoma patients like Beazlie line up, a dozen or so at a time in the hallway, for intravenous blood transfusions and chemotherapy. “You have people just starting out, trying to be optimistic, sitting next to people who are a breath away from being dead,” Beazlie says, gesturing to the metal IV racks, now idle. “It’s like, ‘This is where you’re going . . . . You’re going to die.’ ”

Moments later, a patient trying to sit in a wheelchair collapses to the floor. “Loss of motor control,” Beazlie explains calmly, seemingly inured to such scenes. He sees a nurse he knows and lavishes praise (“She can find veins that don’t exist!”), and later talks enthusiastically about a doctor, just one of many unsung heroes here, who shows promise “as a healer.”

Beazlie has learned to talk dispassionately about his own eventual death. He forecasts it by year’s end because his sarcoma is eating at his insides: “There are days when I can’t get out of bed. If I get a coughing spasm, I faint. I hyperventilate. You just learn to deal. That’s what life is all about, anyway. We’re just getting a concentrated crash course on dealing.”

Then, a new wheelchair rolls in. In it is an angular young man with sandy brown hair so delicate it might belong to a child. His legs are stick-thin. In his expressionless face are wide, staring eyes--the eyes of someone who sees but does not understand. It is a young man whom Beazlie recognizes, someone he knows from long-ago visits here. Beazlie’s eyes fill with tears.

“I just haven’t seen him in a while,” he says, his voice breaking. “He’s only 24. He’s a street kid, has no family. And he’s really gotten bad.” And for a long moment, Kimon Beazlie cannot speak.

SILVIO R. HERNANDEZ, 59, is known to friends as Rudy--notwithstanding a mix-up on his birth records, he was named after Rudolph Valentino. He fled Cuba as a young man, studied briefly at Louisiana State University and had come west in the early 1970s, drawn by the excitement that California offered. Charming and affable, he took an apartment in the burgeoning gay community near the Sunset Strip and surrounded himself artwork and film posters. He managed a storage company, and his health was good except for bouts of asthma.

Then one evening three years ago, as he watched television, Hernandez was seized by a galvanizing sensation “like a positive and negative cable coming together” in his head. The jolt lasted several seconds, followed moments later by another one. Screaming, he summoned help by telephone and was rushed to a hospital emergency room.

The diagnosis was vertigo--an unexplained dizziness. For several days, Hernandez was confined to a hospital room, his equilibrium so poor he had difficulty reaching the bathroom. Aware that he belonged to a high-risk group because he was gay, he asked to be tested for the human immunodeficiency virus.

The results were positive. For a year, Hernandez stayed home on disability because of the vertigo. Doctors could never link the HIV virus with the strange episode of dizziness, but soon Hernandez experienced other health problems: His asthma worsened; he couldn’t walk three blocks without gasping for breath. Bursitis set in. He could not raise his arm over his head. He became so fatigued he sometimes could not pick up light objects from the floor.

He fretted incessantly that the virus, once dormant in his blood, was now attacking. Months passed, and a particularly severe asthma attack nearly choked him. He was taken again to an emergency room. Psychologically, the torment grew, day and night, an unshakable curse that left him crying, unable to sleep.

“Already, I was getting a lot of emotion,” Hernandez says in a voice that still sings with a Cuban accent. “I was dealing with the fact I was going to die. You wake up at 1 or 2 in the morning and you start thinking, thinking, thinking. You cannot go back to sleep for three or four hours. You wake up in the morning and you are so tired because you spent four hours at night thinking.”

As his year of state disability neared an end, Hernandez ran head-on into the first of the insurance problems that would plague him for years. His private health-care provider, which had been charging $600 a month for coverage, raised his premiums to $1,000. A $50-a-month supplemental policy from another company was canceled because he lived in a “high-risk” neighborhood.

Hernandez suspects that the insurance companies learned of his HIV diagnosis through his medical records. The huge increase in premiums forced him to drop his private coverage and in early 1987, a year after his attack of vertigo, Hernandez boarded a bus for East Los Angeles. The trip to County-USC Medical Center took 90 minutes, including a transfer downtown, and the wait inside 5P21, even with an appointment, was often three hours. But Hernandez had heard that the medical care, once you got it, was excellent.

One of his first experiences was a laboratory blood test of his T-4 helper cells, the agents of the immune system that are attacked by the HIV virus. Once in the cell, the virus replicates, destroying the cell in the process. Measuring the “T-cell” counts gives doctors a rough--and sometimes suspect--barometer of the health of the immune system. Healthy human blood contains 800 to 1,200 or more T-4 cells per cubic millimeter. In AIDS patients, the counts are often dramatically lower, and often fluctuate widely even in a single patient. Under current guidelines, patients can begin receiving AZT--the relatively effective, but toxic, drug for halting the replication of the virus--when T-cell counts drop below 500, or when full-blown AIDS is diagnosed.

At the time of Hernandez’s test, however, AZT was not prescribed until T-cell levels fell below 200. Hernandez’s reading was 219. “I was not too familiar with the T-cell situation,” he recalls. “I say, ‘What does that mean?’ (The doctors) say, ‘You are OK.’ ”

The pronouncement was something Hernandez had difficulty believing. His T cells, monitored every three months, showed an improvement to more than 400 in a subsequent test, but his health was getting worse. He had difficulty walking because of pain, and at night he woke up sweating and feverish. He had diarrhea continually, and again he was rushed to the emergency room with an asthma attack.

A records clerk at County-USC Medical Center signed a letter for Hernandez in September, 1988, declaring him medically disabled. Armed with that, Silvio Hernandez took the first step in his long dealings with the government bureaucracy: He applied for Social Security benefits, a process that normally takes three months.

TIM WALSH TOOK STOCK of his fast-paced life in the summer of 1987 and told himself: You’ve got to slow down. He was 25, a lanky kid from the San Fernando Valley with thin brown hair and large, serious eyes. He worked as a computer specialist at a law firm and kept a social calendar packed with events--gourmet meals that he cooked at home, traveling, parties. He and his lover, a transplanted Northern Californian named Ron Satora, shared a West Hollywood apartment near the night life.

Like Hernandez, Walsh was aware that he belonged to a high-risk group in a city that was being hit harder by the epidemic than anywhere in Southern California. Walsh also was feeling ill--anemic, feverish. His bones ached. A burning sensation developed in his throat and spread down his esophagus, making it difficult to swallow even water. He started losing weight. Like many gay men, he paid enormous attention to each real or imagined change in his physiology, and yet he argued with himself: He felt he was just running himself ragged.

A vacation would help, he decided. He had blood drawn for an HIV test and left with the sandy-haired Satora, a bank operations specialist and prize-winning amateur bowler, for Waikiki, for the relaxation that might heal him. But increasingly, he knew: Something was drastically wrong. He barely made it through the 10-day trip. While Satora sought out the Hawaiian night life, Walsh returned early to their room on the beach. The test results were awaiting him on the mainland, but he knew in his gut what they would show.

At the testing center, Walsh listened, lit a cigarette and cried.

Then he became sicker--rapidly. Just three weeks after getting the test results, he was admitted to Queen of Angels Hospital with bleeding ulcers, tuberculosis, anemia and herpes of the esophagus. “The consensus among doctors not versed in AIDS was that he was going to die,” Walsh’s private physician, Dr. Peter Kennedy, says. Walsh’s hospital stay lasted all of October; his T-cell count hovered ominously near zero.

Rallying some strength, Walsh finally went home, but his struggles had only begun. In a condition so fragile that he cries when he remembers it, Walsh was forced to confront the realities of his life: He needed help. He began visiting his doctor regularly under a private health-care plan, often undergoing transfusions, often becoming demanding and loud. “It was very clear he was just scared to death,” Kennedy says.

Meanwhile, Satora was wondering: Me too?

Keeping the relationship together was to be one of the tender and stormy challenges of Walsh’s life. One bone-chilling autumn night, Walsh began reaching out for help, for himself and Satora. Escorted by his mother, Bonnie, and Satora, he joined a crowd of nearly 300 assembled by activist Louise Hay in a West Hollywood park--a regular meeting of meditation, chanting and encouragement for AIDS sufferers. As individual members of the crowd were invited to speak, Walsh asked for the microphone. He grasped it and, looking around at the crowd, could not utter a word before he began crying.

Members of the crowd soon engulfed him, offering cards, telephone numbers. It was an omen of good fortune. Walsh would get help.

Walsh’s employer kept him on its payroll and essentially ordered him to stay home. (“They didn’t think I was going to last,” he says.) He also left his apartment, where Satora was awaiting results of an HIV test of his own, and returned temporarily to his mother’s house in Culver City. Bonnie Walsh took charge of her son’s daily regimen of drugs. She put the multitude of pills, about 10 in all, in plastic bags, and Walsh took a bag’s worth every four hours, day and night. Meanwhile, Walsh was on the phone to local nonprofit help groups, including Being Alive, Aid for AIDS and Aids Project Los Angeles. From them, he learned of the state’s TK YEAR OLD Health Insurance Premium Program (HIPP), through which the government pays insurance premiums for AIDS patients to help them maintain their private insurance plans and keep them out of the public health-care system. It would enable him to retain his private physician and possibly, because of that’s doctor’s interest in his welfare, play an important role in keeping him alive.

“He’s taken hold of his illness,” Bonnie says.

Satora, meanwhile, tested positive for the virus, a result he expected. He and Walsh talked about it. Facing death was one thing; but now, what Satora dreaded was facing his family.

The eldest of six children, Satora had grown up in conservative surroundings in the town of Livermore, near Oakland. His His father had been the type to tell homosexual jokes. His mother, a strict Roman Catholic, had become alarmed when Satora first started living with a male roommate years earlier. She would call at 4 and 5 in the morning, waking her son and demanding: “Are you gay? I can’t accept you that way!”

“No, I’m not gay,” Satora would say, lying to appease her.

Now he would give his parents a double whammy, the same double whammy that so many parents have received throughout the epidemic: He was not only gay, he was also HIV infected. He planned to break the news on a trip home for Thanksgiving. He flew north, re-entered the household of his youth, where his father and younger brothers made flip remarks about gays and AIDS and his mother gave him that same old accusing look.

“It just made me sicker inside,” he recalls.

So Satora stayed for the holiday, told no one in his family about his diagnosis and came home.

UNDER THE TOWERING main building of the County-USC medical center is a cavernous basement the size of a football field, packed with color-coded folders containing the vital charts, laboratory reports and other medical records of more than 1 million patients. The files fill row upon row of high shelves seemingly into infinity. Frequently, partly because of the sheer volume, files become lost; patients’ claims for Medi-Cal or Social Security reimbursements--the only income that keeps some AIDS patients off the streets--are explicably denied or tied up in months of red tape.

Hernandez’s claim was answered in four months: Denied. His file, the agency said, contained insufficient information.

The news was followed, a month later, by a change in his medical condition. The silver-haired movie fan developed a herpes rash covering much of his body. As the rash disappeared with medication, something worse appeared: herpes-related shingles affecting nearly all of his right leg. The nerve condition was so excruciating that Hernandez was referred to County-USC’s Cancer Pain clinic.

“He was in pain severe enough to keep him from sleeping,” remembers Dr. David Cundiff, who prescribed a morphinelike drug. “He was virtually immobilized.”

Hernandez was not without help: He was sharing his apartment with a longtime companion who was not infected--a man who could cook and attend to chores--and numerous other friends were there for moral support. But not one of them could stop the agony.

“I was screaming, yelling, in my home at 2 (and) 3 o’clock in the morning, putting ice, things like that,” Hernandez says. During the same month he visited the Cancer Pain clinic, he submitted a new application for Social Security benefits.

TIM WALSH WAS BACK in the hospital at St. Vincent Medical Center only three months after his near-death. Admitted this time with a fever of 105, he recuperated for three weeks, and left with the same dismal T-cell levels.

The stay marked a turning point, however. He and his lover had reached a decision: Walsh would return home to their apartment. Somehow, against almost insurmountable despair, they would try to sustain a relationship.

And occasionally, there were times worth savoring--day trips, dinners out. Walsh spent many idyllic afternoons poolside at the Los Angeles Center for Living, a now-defunct gathering place in a quiet neighborhood where people with life-threatening illnesses were able to sit and chat. Surrounding the pool was a yard with ferns and brick, and usually there was music and an afternoon meal of salad, cheese and rice.

Satora, however, who was still without symptoms, shied away from such groups. He bowled, continued working and tended to Walsh in the evenings. At times, when the pressure built to more than he could handle, he shouted, threw things, slammed his fist into the wall.

On a day in April, nearly five months after his trip home for Thanksgiving, the mounting fears about his own health and the possibility that he could begin an experimental drug treatment even before developing symptoms prompted Satora to act. He telephoned his family and finally broke the news: He was gay, he was HIV positive and he was seeing a private doctor.

The reaction was much as he feared. His father, the more understanding of his parents, has not told gay joke since. But his mother came apart with fury. She sent a letter to Satora saying he was no longer her son--she disowned him. His lifestyle, she ranted mutely, was disgusting.

In the two years since Satora opened the letter, he and his mother have not spoken, except for one or two angry exchanges. “My mother died April 28, 1988,” Satora says. “That’s the day I got the letter.”

BY EARLY 1989, the county’s death toll was 4,484 and the number of reported new AIDS cases averaged 214 a month, more than double the rate of just three years earlier. The numbers were so routinely horrifying that they had begun to lose their shock value. It was in July that Kimon Beazlie became one of those statistics, discovering the fleshy masses on the roof of his mouth that represented full-blown AIDS.

Beazlie, who had known he was HIV-infected, quit his job as a costume designer, and found himself without insurance and needing urgent medical care. The solution was obvious: 5P21. But the wait was nearly two months.

He stopped at the clinic every week during that time, trying to see a doctor because he “kept freaking out,” Beazlie says. Patiently, a nurse practitioner explained each time that he would have to wait. The clinic was booked. He was not bleeding. He was not so desperately ill that he had to be admitted to an AIDS ward or an emergency room. His lesions would be examined when the time came for his appointment.

Having no money for private care, Beazlie passed the time at home as the two sarcoma lesions ate sores into his tongue. “They were like very potent battery acid,” he recalls. “The pain was too excruciating.” To sleep, he taped a four-inch wood dowel in his mouth to keep his tongue from touching the boils. The lesions “finally erupted and drained down my throat before I ever got to see a doctor.”

After seven weeks, Beazlie kept his appointment at 5P21. Doctors prescribed chemotherapy, which, he was told, would put the Kaposi’s sarcoma into remission and give him some months of relatively good health.

Ric Abeytia also became another of the growing number of statistics last year. A banker who resided in South Pasadena, Abeytia had just changed jobs and, like Beazlie, was without health insurance. At 37, he is a thoughtful, disarmingly witty man with the look of a young college professor, sporting wire-frame glasses and a thick shock of black hair.

Abeytia entered County-USC Medical Center via the emergency room. A week after developing flulike symptoms, he began vomiting blood. Emergency room attendants pumped his stomach and talked about him, as he lay on the gurney, as if he were an ulcer-plagued alcoholic (“Wait a minute,” Abeytia recalls saying, “Why are you treating me as an alcoholic? I don’t drink!”). He was fed intravenously for several days and sent home, undiagnosed. Probably a bleeding ulcer, he was told.

The next month it flared up again--the same problem, the same trip to E.R., the same weeklong stay on a gurney.

Abeytia was becoming exasperated. A month later, deja vu. More vomiting, more blood. Back into E.R. for a third time, for another stomach pump, for more IVs. Assertive by nature, Abeytia pressed for answers. Something was wrong. Something was causing this. What was it?

Months earlier, fearful because several friends had developed AIDS, Abeytia had submitted to an HIV test. The result was negative, a finding he had doubted then and which now became more suspect. He lay for several days on a gurney in a unit called the Red Blanket Room--for patients with internal bleeding until he at last got lucky: He saw a friend, a one-time musician named Francisco Garcia, who happened to be a research nurse at the medical center. Garcia’s specialty was upper-gastrointestinal hemorrhages, and he was screening patients in the Red Blanket room to find candidates for internal scoping--a procedure, technically called an endoscopy, in which a fiber-optic tube is inserted into the stomach to look for problems.

Garcia, who hardly recognized his sickly friend, scheduled Abeytia for an endoscopy, which identified the problem as candidal esophagitis, a fungal infection associated with AIDS.

Abeytia was indignant that it took three hospital visits--a total of about 12 days--before the endoscopy was performed, but Garcia noted that at a county hospital, where funding is chronically short, not every test can be performed on every patient. “We see masses of people here,” Garcia says. “It’s not like going to a private hospital where you have the total attention of the doctors and nurses and you can run as many tests as you want.”

Regardless, Abeytia was now at the right place: 5P21. Like several hundred patients there, he chose to take advantage of one of the clinic’s most important services--experimental drug trials. At any given time, about 70 different AIDS drugs are being tested on county patients who volunteer to take them. In Abeytia’s case, the drug was one formulated to stop the candidal infection.

It seemed to work, but his T cells--monitored frequently during drug trials--declined during the next few months. Abeytia became a scholar of the illness, learning about drugs and his own body as if he were trying to master the programs and hardware of a home computer. Only in this case, the hardware was failing. He soon developed tuberculosis, which required a drug incompatible with the stomach medication. He gave up the stomach drug only to have a relapse of internal bleeding, which landed him once again--the fourth time--in the hospital.

A new T-cell report was back from the lab soon after he was released: He was down to 120, a drop of nearly 400 T cells in three months. Abeytia was alarmed. The numbers just kept dropping. Where would they be in the next three months? Or even in three weeks? He would have no T cells left--he was dying. He left the clinic and took the freeway home, crying.

The T-cell counts finally stabilized. He was now taking the drug AZT, which caused nausea and vomiting, but in late summer, Abeytia enjoyed a short span of relatively good health. The next problem that developed was by now, at least, familiar: the rather hollow feeling in his gut that invariably preceded the bouts of internal bleeding. This time he was ready for it. All he needed was the stomach drug.

Could he get it?

He was talking with the physician’s assistant who handled most of his appointments at 5P21. The medical staffer was skeptical. He was reluctant to prescribe the drug because Abeytia was showing no obvious symptoms. Drugs frequently have side effects, and it was quite possible that Abeytia was reacting to only fear and paranoia. An argument ensued, and Abeytia left without the medication. He was persuaded, instead, to schedule an appointment with a county psychiatrist.

SILVIO HERNANDEZ’S SECOND claim for Social Security, following the paralyzing nerve problem in his leg, went unanswered for three months. He was now a familiar sight in the AIDS clinic; it had been 3 1/2 years since his attack of vertigo and 18 months since he had become a regular at 5P21. It was also eight months since he had first applied for monthly Social Security payments.

Hernandez, still suffering intensely and walking with a cane, was becoming obsessed with his quest for the long-term disability benefits, which would total nearly $700 a month. The urgency was fueled by the recent death, of AIDS, of a close friend from Puerto Rico, a man who had responded to his declining health by going on a rampage of drugs and alcohol; Hernandez had just attended his memorial service. His sense of mortality inflamed, he called the Social Security office and demanded to know the status of his case. His file, someone explained, was not there--it was lost.

“How can that be?” Hernandez shouted.

Sorry. It wasn’t there.

He cried during the night. He could not sleep. “I think that damaged my situation more than the disease,” he says. Hernandez--who keeps thick files documenting his case--reports that the missing file was discovered a month later. It had not been reviewed, however, so he was asked to wait three additional weeks while a decision was made. He was given a date and time, he says, and assured that a call would come.

Hernandez waited by the phone. It never rang.

Angry, Hernandez again badgered the office, only to be told--once again--that his file was incomplete. A Social Security official offered to send him, free, to a doctor in the San Fernando Valley, where the necessary reports could be obtained.

Hernandez indignantly refused. Had he not been seeing county doctors for 18 months? Why was that not good enough for Social Security? Why were they doing this to a man who was sick? A man who was dying?

Although Social Security officials cannot comment on individual cases, hang-ups in processing a claim occur for any number of reasons, says Joe Carlin, Los Angeles / West branch chief for the state’s Disability Evaluation Division, which contracts with Social Security to decide on patient eligibility. Typically, analysts request necessary medical records from county hospitals--a process that is at best hit-and-miss, he says.

“Generally, on cases where we’re dealing with county medical facilities, it is a problem getting records,” Carlin says.

So disorganized are the records that two years ago a full-time employee named David Stewart was stationed at County-USC just to track down missing medical reports needed by Social Security officials. Stewart says the million or so files stored in the county basement are in constant motion, trundled to various clinics as needed by doctors, with laboratory reports and doctors’ notations being added all the time. “It’s amazing . . . the amount of papers that flow from one place to another.”

In any single case, Carlin says, it is difficult knowing where to pin blame. “It’s either, A, we didn’t get the records, or, B, we got the records and there wasn’t enough detail,” he says. “The final possibility is, we did not do the case properly.”

The benefits claim became a crusade for Hernandez; the sleeplessness, the anger swallowed him up. Why? Why? Why? How could they deny him? At one point, he says he entered the records room himself, determined to see what his file contained. There was nothing about his nerve-damaged leg. But there was a medical report concerning a different Hernandez altogether, somebody who was perhaps also trying in vain to get his benefits.

Tired, bitterly frustrated, Silvio Hernandez took a T-cell test in the fall of 1989. The count, previously in the 400s, was now down to 95.

KIMON BEAZLIE SHAVED off his long hair. Like many chemotherapy patients, he found it disturbing to see the long locks fall out whenever he showered. He was receiving treatments on alternate Thursdays and getting to know members of his own treatment group, those who joined him for intravenous therapy in the pale-yellow hallway.

One, in particular, became a favorite of Beazlie: a young man named Brian, only 23, who attended each session with his mother. “You just don’t see parents here,” says Beazlie. The three would pass the time chatting.

Brian began missing days--he was sometimes too ill to keep his appointments--and eventually, the youngster dropped out of the group. A nurse told him that Brian had switched weeks, coming in on the Thursdays when Beazlie was not there.

Beazlie visited the clinic the following Thursday to look for him, but Brian was nowhere to be found. “Finally, I confronted (a nurse), and I said, ‘Brian’s not here, is he?’ ” Beazlie remembers. “And she said, ‘No, he passed away.’ ”

Soon after Brian’s death, Beazlie temporarily dropped out of treatment. He packed for a trip to Hungary, where he planned to visit his lover, who was working overseas. He also hoped to buy drugs on the European underground.

One question that nearly all AIDS patients ask themselves sooner or later is whether they should try medications--and there are hundreds--that have not yet been approved by the federal Food and Drug Administration. In recent years, liberalized policies have made many of those medications available in experimental trials at clinics such as 5P21; and yet the underground remains vitally active. Rumors percolate through all levels of the gay community about interferon treatments developed in Africa or purported wonder-drugs manufactured only in Japan. Such drugs are imported to the United States, but many patients find them dismally disappointing.

“It’s like the ‘20s speak-easies,” Beazlie says of the medication underground. “Someone might say to you, ‘Get in touch with so-and-so, he’s involved in it.’ And you go to someone’s house and say, ‘Joe sent me.’ ”

In the States, Beazlie had not found anything on the underground to effectively combat Kaposi’s sarcoma. On the trip to Hungary, all he managed to pick up was a German-made drug called Balachek, an elixir fortified with minerals that cost $1 a bottle.

RIC ABEYTIA WAS BACK in the hospital with internal bleeding. Well before his scheduled psychiatrist appointment last fall, the Candida had returned. And now here he was, sick again, hooked up to IVs, receiving stomach medication that he had pleaded for earlier. With bitter solace, he told himself: You were right! They didn’t listen!

According to Dr. Fred Sattler, however, the drugs for Candida are never prescribed at the earliest onset of the infection, and for good reason: The fungus can mutate. Abeytia’s attention soon turned to the health of his best friend, a once burly, 250-pound college pal who was admitted to the County-USC AIDS ward the same month. The 22-bed ward, separate from the crowded outpatient clinic, provided his friend with terrific care, Abeytia says. But his friend was down to 140 pounds and dying. Even after he returned home, Abeytia and the patient’s mother took turns at his bedside.

“We discussed very common-sense things,” Abeytia says, recalling those conversations with his friend. “ ‘What do we do about the funeral?’ ‘What do we do about your house?’ ‘How about your car?’ ‘Is the will taken care of?’ And at the same time I was trying to be as comforting to him as possible because he was very scared. I’d crawl into bed with him and just hold him, just to try to make him feel a little better.”

The friend returned to the hospital the first week of December. He slipped into a coma and died five days before Christmas.

“I CANNOT WALK,I cannot sleep, I’m having diarrhea at night in bed. I cannot control my bowels. I have to start using diapers like a baby.”

That is how Silvio Hernandez describes his medical condition as of late last year. He had developed mixed emotions about the health care at 5P21. He appreciated the apparently sincere efforts of his doctor to help him, and yet he was rushed in and out so fast--five or 10 minutes, on most visits--that he did not really understand what was being done for him or why.

And he wondered whether his doctor even understood what treatments he needed most. “There are just so many people,” he says ruefully. “The system is just so overworked.”

Hernandez stopped taking the bus from West Hollywood to 5P21, relying instead on volunteers from AIDS-assistance organizations to drive him. It was the Los Angeles-based Minority AIDS Project that now intervened in his nearly year-old battle for Social Security benefits.

That organization put Hernandez in touch with the office of State Sen. David A. Roberti (D-Los Angeles), where an administrative assistant named Lynn Shepodd took charge. She saw Hernandez’s case as “an abomination.”

“They were asking him to jump through all these hoops and I just couldn’t figure out why,” Shepodd recalls. “Every time he would go to a doctor, they would either misplace his records or they’d tell him he had to go see someone else. He was just so tired and worn out. He just called (our office) in desperation.”

Sheppod’s telephone calls were effective. Four days after Christmas, 1989, Hernandez was asked to visit the West Los Angeles Social Security office on Hollywood Boulevard. He grins as he remembers the office manager meeting him at the door. “They apologized 15 times,” Hernandez says. “They say, ‘This is not the way (we) operate.’ They wanted to know who I was that they received three calls from Sacramento. I say, ‘I am nobody. I am just a poor man that works very hard, and I have a disease that I don’t know how long I’m going to live. And I need my money NOW.’ ”

He got it--a check for $630. Two weeks later, he got a second check for $7,755.53, representing retroactive Social Security payments for more than a year.

Hernandez sent Shepodd a dozen roses in a gold box.

AT DR. PETER KENNEDY’S Wilshire Boulevard office, the physician and his patient, Tim Walsh, had a confrontation. If he didn’t go back into the hospital, the doctor told him last December, he was going to die.

Walsh had picked up a bacterial pneumonia and had been eluding the doctor during office visits, obtaining drug prescriptions from a nurse and skipping out, even though he was rapidly losing weight, Kennedy says. Walsh entered the hospital and soon was hovering near death. For two days during the holidays, he went home, a sojourn that required 24-hour nursing care; once, as he tried to walk, he fell while connected to an intravenous needle, spilling blood in the apartment.

By the time the hospital stay was over, Walsh was connected with a subclavian catheter--a tube under the collarbone that enabled him to administer his own intravenous medications. Through that tube, he took antibiotics, a hormone to boost red blood cells and a high-calorie mixture of protein, carbohydrates and vitamins--home therapies generally difficult to get through the public health system. “I’m sure (the nutritive mixture) kept him alive at times,” Kennedy says.

All of this, the drugs, the coughing, the IV tubes that Walsh wore to bed, was taking a toll on Ron Satora. Still asymptomatic, Walsh’s lover carried the burden of nearly all the work at home, from feeding the two cats to fetching cold towels for Walsh.

It was Satora’s nature to keep his frustrations in him, bottled up. His doctors were now prescribing larger and larger doses of anti-depressants. Occasional temper tantrums--the venting of those clamped emotions--were punctuated this spring by an attack in which his blood pressure shot up and his heart rate leaped to 250. He temporarily lost his eyesight and he was rushed to the hospital.

Nerves. Just nerves. “It’s all on my shoulders,” Satora says.

AS THE SUMMER ARRIVED, anger and frustration mounted. Furious activists shouted down the federal health and human services secretary at yet another international AIDS conference where medical progress seemed dim.

Los Angeles County, early in the year, had authorized the hiring of additional medical personnel to reduce the waiting list at 5P21 to only two or three weeks, Sattler says. But for several months the positions were not advertised, Sattler says, and have remained unfilled, in largely because county salaries are far below those in private health-care.

The personal battles, too, wore on:

* Silvio Hernandez adds to his videotape collection, fretting over his health. He has lost 40 pounds--down to 125. Lately, letters have been arriving from Social Security saying the agency has overpaid him, one demanding a refund of $27, another a refund of $98.

“It is confusing. What is going on, I don’t know,” Hernandez says. “They make so many mistakes. I don’t know what I’m supposed to receive every month any more.”

* Tim Walsh was back in the hospital for much of June with bacterial pneumonia. He was looking very thin in late July, and coughing heavily. His speech is slurred and he complains of tiredness; his doctor talks pessimistically about the chances of real improvement. Satora, meanwhile, took an 11-day vacation in Hawaii alone, at the insistence of his own doctor. “I worry too much,” he said as he packed for the airport. “There have been times I felt like I don’t know how much longer I can deal with this. But I don’t think I could ever leave him.”

* Kimon Beazlie, the one-time rock climber and Hollywood costume designer, is very ill at home. Doctors at 5P21 wanted to insert a tube in his chest, similar to Walsh’s, and to place Beazlie on an alternating schedule of blood transfusions and chemotherapy. Instead, Beazlie withdrew himself entirely from treatment. In his renegade outlook he asks himself: Why get a transfusion one week when chemotherapy would destroy your new blood the next?

The German drug Balachek had done nothing for him, Beazlie says, talking painfully, as if he had just come from the dentist. The sarcoma lesions have returned and now fill his whole mouth. He coughs violently.

Two months after taking a visitor through the county clinic, Beazlie now keeps to his apartment except to settle last-minute affairs. He is trying to find a home for one of his dogs. Two other dogs are so old they probably will be put to sleep, he says.

On a sunny Monday in late July, Beazlie arranged to be cremated. He talks of going on a morphine drip--the way out for many AIDS patients.

Dying, he says, will be an end to pain.

* Ric Abeytia is a healthy man--or so he feels. Eighteen months after the vomiting and internal bleeding that marked his introduction to AIDS, the former banker works full time at the offices of Being Alive, a Los Angeles-based help group. Abeytia is now on a clinical trial for the experimental drug DDI because AZT was causing him too much discomfort. He takes stomach medication when necessary and follows the medical bulletins for possible breakthroughs, for hope. He was preparing to enter the county AIDS ward for 10 days of treatment for a lingering bacterial infection, but he planned to take his briefcase and office files with him.

“I’ll make it an office,” he says. The work for Being Alive pays one-fourth what he made as a banker, but, he says, helping others makes it easier to deal with his own illness.

“I’m sure he has his bad days when he’s down and depressed and cries like the rest of us,” says Abeytia’s friend, Ian Barrington, who also has AIDS. “We talk on days when he can’t work, when he’s really ill. But I can always count on him calling me three or four days later, back on his feet and dancing again. A lot of courage.”