AIDS-Related Complex--Its Victims Left in Limbo

The ragtag campsite of tents and campfires scattered across soggy grass at United Nation’s Plaza in San Francisco has become a home for 100 determined men.

For the last four months, the only diversion for the campers has been occasional taunts or cheers from passers-by and paramedics arriving to cart another sick comrade off to San Francisco General Hospital.

The protesters, many wracked with pain and fever, plan to continue their 24-hour-a-day vigil in front of the regional headquarters of the U.S. Department of Health and Human Services until the state and federal governments come up with more money for AIDS research and--especially--easier access to government benefits for the tens of thousands afflicted with the little-understood range of symptoms known as AIDS-related complex or condition (ARC).

Sanctioned by the city’s Board of Supervisors and tolerated by the federal government, the vigil was organized last October by Mobilization Against AIDS as a one-day event to publicize the plight of those with ARC. But day after day the men stayed put, taking turns chaining themselves to the doors of the old federal building and camping out, and the protest has grown into a mini-city run by the ARC/AIDS Vigil Committee.

Those with ARC not only face many of the same grim health problems and ostracism of those with AIDS, the protesters say, but also they have the additional burden of not being able to qualify as easily for many of the social services and disability benefits afforded the other group. Even some of the community agencies that have been helping people with acquired immune deficiency syndrome say they have had to limit help to ARC patients because of financial constraints.

Epidemiologists loosely estimate that 170,000 Americans suffer from ARC. These individuals have apparently been infected by the AIDS virus but do not have the opportunistic infections or rare cancers that the federal Centers for Disease Control specifies in its five-page definition of full-blown AIDS.

ARC patients suffer from a combination of symptoms that include swollen lymph nodes, minor irregularities in immune response, fatigue, night sweats, diarrhea, weight loss, fevers and chills. Approximately 10% to 20% of these patients go on to develop AIDS.

“It’s terribly difficult for them to get financial help. It’s outrageous. These people are so ill,” said Robert Bolton, financial advocate for the New York City-based Gay Men’s Health Crisis, the leading social service agency helping AIDS victims in that city. Because of the difficulty in getting help, he added, many of those stricken with ARC stay on the job to the detriment of their health.

Under some state and federal programs, those with a Centers for Disease Control-defined AIDS diagnosis are automatically presumed to be disabled and are immediately eligible for a variety of medical and assistance programs.

The same is not true for those with ARC. While some ARC patients are more severely ill than those with AIDS, others suffer only mild discomfort. Because no one has yet come up with an accepted way to define the levels of infection by the AIDS virus, each ARC patient’s application for benefits must be determined on an often-lengthy case-by-case basis. As a result, many ARC patients have had to wait months to receive financial aid, and others have been denied benefits altogether.

Adding to their anxiety, some individuals have received both AIDS and ARC diagnoses from different doctors. And some have died before they could untangle the resulting red tape.

Gary Harmon, a 30-year-old former Oakland restaurant manager, found himself subjected to such Ping-Pong diagnoses.

“First one doctor said I had AIDS, then another said it was ARC,” Harmon said. “I don’t care what they call it; it’s killing me.”

“The difficulty with ARC is that even though people are dying from it, it doesn’t exist bureaucratically,” says Susan Sedaka, associate director of the Visiting Nurse Assn. of Los Angeles. The problem is especially severe, she said, because many of the victims of ARC are young gay men who have little life savings and usually lose their medical coverage when they become too ill to work.

Estimated $1.5 Billion in Costs

Moreover, the health needs of these patients are adding further financial strain on an already burdened health care system. The Centers for Disease Control estimates that the AIDS epidemic so far has cost more than $1.5 billion in medical and welfare costs.

California health officials estimate that about $55 million will be spent this year on medical and welfare costs associated with AIDS. State Sen. Diane Watson (D-Los Angeles) is sponsoring legislation to determine how many ARC patients there are in California and how much is being spent for their care.

Both state and federal researchers say they are wrestling with a definition for “severe” ARC to better determine which patients are truly disabled. But agreeing on the definition may take months.

In the meantime, Social Security officials say they are updating disability instruction manuals with more recent medical information about the symptoms and laboratory tests so that assistance can be provided faster.

And the State AIDS Advisory Committee is working on its own definition which, if approved by the state Department of Health Services, will be used to help determine ARC benefit eligibility, said Dr. Michael Roth, committee co-chairman.

Dr. Peter Drotman, epidemiologist at the federal Centers for Disease Control, said his agency is just beginning to devise a classification scheme for the various manifestations of the AIDS virus.

While the Centers for Disease Control’s definition of the severest manifestation of the disease has been used by other federal agencies to determine benefits, Drotman noted that such definitions were not originally formulated by the health agency for that reason.

“The definition was devised as an epidemiological tool for fixing public health problems, not Social Security problems,” Drotman said. “Disability is one thing, and defining a disease is another. There are clearly those who are disabled who meet our definition and those who meet the definition who are not disabled. “

It is often difficult to get medical experts to agree on definitions, Drotman explained. Some proposals, based on laboratory and clinical findings, “often read like Chinese menus. Take findings from group A and some from group B, and some from group C.”

Epidemiologists now estimate that from 1.5 million to 2 million people have been infected by the AIDS virus. The vast majority of those have so far not gone on to develop AIDS or ARC. As of February, 17,741 AIDS cases have been reported, including 9,294 deaths. In those cases, the AIDS virus destroyed the immune systems of patients, leaving victims defenseless to infections and cancers--two of the most common being Pneumocystis carinii Pneumonia, a parasitic pneumonia, and Kaposi’s sarcoma, a cancer of the blood vessel walls.

The relationship between ARC and AIDS is still a matter of research and debate, doctors say. Some patients have been known to have had ARC for years without developing AIDS. But whether ARC is a precursor to AIDS or a milder form of the disease is still not clear.

The Social Security Administration says it has not kept track of how many ARC patients have applied for benefits until recently, though more than half the applications that have been processed since last September have been rejected. “We believe most of them aren’t severely ill and stay on the job,” a Social Security spokesman explained.

While vacationing in Hawaii last summer, Gary Harmon became ill and was diagnosed at a clinic as having AIDS. Back home in Oakland, another doctor told him he had AIDS-related complex.

Continually fatigued, often disoriented and suffering from fever, he kept on working until one day he fainted while overseeing preparations for a banquet at the restaurant.

He has been unable to go back to work. The lymph nodes in his body are so swollen that they press on nerves, and he has to walk with a cane. He has had two operations to alleviate rectal infections.

In August, Harmon applied for Social Security disability benefits and Medi-Cal. “They told me if I had only had the AIDS diagnosis, I could get it easily. But the ARC diagnosis confused things so my case is still pending,” he said.

Leaves Hospital

During a hospital stay last December, a nurse refused to change his dressings. He complained, but the next time the nurse was in his room she pretended not to understand English, he said. Enraged and in pain, Harmon left the hospital.

When he went back to his apartment, he found that his lover had sold all their household furnishings and left, he said. His family refused to help, saying they were afraid they would catch the disease. With no place else to go, he ended up at the United Nations Plaza campground, where a volunteer held him while he cried.

Harmon qualified for $288 a month in state welfare assistance and food stamps. But after paying $100 a month for a room in a run-down hotel, he said he often does not have enough money for a balanced diet, though the vigil participants try to help one another out.

Last month, a contingent went to Washington to lobby House Budget Committee members to help obtain disability benefits for those with ARC and to double spending for AIDS research, education and health programs. Frank Richter, a vigil member, said the group felt frustrated when told by committee staff members that it was unlikely that next year’s money for AIDS-related programs will exceed the current $234 million.

A member of the committee, Rep. Barbara Boxer (D-Calif.), has urged the Social Security Administration to improve benefits for those with ARC. She noted that “a similar situation existed in 1983 when people with AIDS encountered difficulties in processing claims.”

At the same time, the ARC/AIDS Vigil Committee members also are appealing to federal health officials to increase the number of experimental drug trials available for ARC patients.

One such test using antiviral drugs was recently completed at UCLA, but the results have yet to be published. Other tests are under way at several research centers, including USC Medical Center and Johns Hopkins Hospital in Baltimore.

Dr. Peter Wolfe, associate director of the UCLA AIDS Center, noted that participants must be chosen with caution. Researchers do not know why some people who are infected with the AIDS virus do not go on to develop AIDS. Giving potent experimental drugs to those who are holding their own could compromise their health, Wolfe said.

Luis Maura, a former lawyer who now works for the nonprofit AIDS Project Los Angeles, said that in some ways, an AIDS diagnosis is less stressful than an ARC diagnosis.

“An ARC diagnosis is an unknown, because there is no resolution,” Maura said. “You are in this limbo, wondering if the next cold is going to be the beginning of something else. . . .”

Maura, 36, was living in Texas in March, 1985, when he was diagnosed as having AIDS. He was pressured to resign from his job because the head of the law firm didn’t want “any of those kind” working for him, he said. He was unable to file for unemployment insurance because he was too sick to accept work. He had lost 30 pounds, but his father plied him with vitamins and five meals a day until he regained some strength.

Maura later moved to California, in part because of better medical services and support groups. Once here, another doctor told him he had ARC, not AIDS.

(Some ARC patients, whose employers paid into the state disability program and who qualify, have been able to receive benefits that average $160 weekly for a maximum of one year. In New York, which has the largest number of AIDS cases and which has ARC guidelines similar to those of California, the state disability maximums are $145 for only 26 weeks.)

AIDS Project Los Angeles provides the same variety of social services to people with ARC as those with AIDS, Maura said. However, not all agencies do.

Shanti Foundation of San Francisco, which provides housing and counseling for people with AIDS, only helps ARC patients if they have been diagnosed as “failure to thrive”--those who have six months or less to live or those who are too sick to eat and waste away. On the other hand, Shanti Foundation of Los Angeles provides emotional support to both ARC and AIDS individuals.

San Francisco AIDS Fund pays rent and utilities on an emergency basis while AIDS patients are waiting for government benefits; however, they do not take ARC clients.

“We have our hands full helping those with AIDS,” said spokeswoman Margot Hagaman, noting also that the organization does not have the manpower to determine whether an applicant with ARC is sick enough to warrant aid.

Richard Rector, 29, a former San Francisco caterer, said he tried to kill himself with an overdose of pain pills in November, after months of wrestling with the medical and bureaucratic battles that came with his conflicting diagnoses.

“I was tired of fighting,” he said.

Four years ago, while living in Laguna Beach, Rector was diagnosed at a public clinic as having AIDS. His symptoms included swollen glands, night sweats and a weight drop from 172 to 98 pounds. A short time later, he moved to San Francisco.

In October, 1984, suffering from additional symptoms including thrush, a fungal infection of the mouth, he received a diagnosis of AIDS-related complex. Unable to work, he was granted state disability benefits.

He applied for Medi-Cal, which provides health care to low-income individuals. After waiting six months for an answer, officials told him that his application had to be arbitrated. Finally, after a salvo of letter writing, Rector appealed to his state senator’s office, which was able to intervene and obtain benefits for him.

Social Security Benefits Denied

In February, 1985, he applied for Social Security disability benefits. Six months later, he was told by officials that he would have to have a check up by a government-approved doctor. Federal officials denied him benefits two months later, saying he was not disabled.

Rector’s state disability payments ran out in December, and he had to go on welfare. He gets $238 a month and had to move out of his apartment and in with a friend, who pays most of the rent.

The symptoms of his illness still persist, he said, and new ones crop up all the time. He has suffered liver damage, an enlarged spleen, a kidney infection, heart and lung inflammation, and has lost some of his hearing and peripheral vision. In January, he filed an appeal for the Social Security benefits. It is now pending.

Since his suicide attempt, he has been seeing a psychologist.

“I was obsessed with ARC,” he said. “Now I’m trying to concentrate on living.”