As the disease spreads, so does concern here

First published on Feb. 13, 1983.

The operating-room nurses at Thomas Jefferson University Hospital were concerned. Rumor had it that the neurosurgeons were operating on a man with a disease so lethal that it might endanger the other surgical patients and the surgical staff as well.

The disease was AIDS .

Across town, at the Hospital of the University of Pennsylvania, doctors tried to save a young man from an infection that is normally just a minor irritation.

But the infection killed him. The man had AIDS .

Next door, at Children's Hospital, technicians used gloves and isolation hoods while working with a urine sample from another dying patient.

This patient also had AIDS .

Philadelphia's hospitals have started holding lectures on this new disease to help their staffs diagnose it. Last month the American Red Cross started screening blood donors to try to prevent the blood supply from being contaminated by AIDS . Hemophiliacs have stopped using anti-clotting concentrates that might already be infected with the disease. And homosexuals, the most common victims of AIDS , are banding together to raise funds and educate their community.

Until recently, the epidemic was confined mainly to California and New York City. But now the number of cases is increasing in Philadelphia, and doctors fear that this may be the start of a widespread outbreak here.

AIDS stands for "acquired immune deficiency syndrome. "It's a mysterious, sinister illness that kills by robbing victims of their ability to fight off disease. In the last three years more than 1,000 people in the nation have been stricken, and most of them - possibly all of them - will die.

Not all AIDS cases are being reported. The disease is so new that doctors haven't agreed on what constitutes a true case. For this reason, the official numbers probably understate the facts.

This was on Dr. Rand Stoneburner's mind a week ago, as he stood in his small office and studied two large sheets of graph paper spread across the top of a file cabinet. Stoneburner is the federal Centers for Disease Control officer assigned to Philadelphia.

The two sheets contained details of every AIDS case reported to the Philadelphia Health Department. For a while, Stoneburner's list had grown so slowly that it seemed Philadelphia was being spared, a mystery in itself since New York is so close and so many people travel between the two cities.

In the 15 months between September of 1981, when the first Philadelphia case was reported, and November of last year, only seven Philadelphia cases had been officially identified. That number has doubled in the last two months, to 14. Thirteen of the Philadelphia AIDS victims are homosexual, one is an intravenous drug user, and all are male.

By itself, this dramatic increase would have been only a warning to Stoneburner. Two months is too short a period to define a trend or to say that an epidemic has started, but Stoneburner had two other reasons for believing that something was happening:

* The Philadelphia increase was in line with the national experience. The Centers for Disease Control in Atlanta said that the number of cases is more than doubling every six months nationwide, with four new cases being reported every day. At this time last year only one case per day was being reported. The official totals are now 1,051 cases, with 406 dead.

* A disturbingly large number of young men in Philadelphia have become fatally ill with diseases that are usually mild infections - cold sores, for example. The infections have spread unchecked in these young men because their bodies have lost the ability to defend against disease. This is the hallmark of AIDS .

The Hospital of the University of Pennsylvania (HUP) reports 13 such cases, 10 of which they think are almost certainly AIDS . At least three more young men have been treated at Thomas Jefferson, and this figure might be low because no one in the city is coordinating data on AIDS patients and because the patients go to a variety of departments for treatment.

Three more AIDS patients have been treated at the Medical College of Pennsylvania, at least six more at Graduate Hospital, three at Temple University Hospital, three definite and one possible at Pennsylvania Hospital, one at West Park Hospital, two definite and one possible case at the Veterans Administration Hospital and one at Delaware County Memorial Hospital.

All told, there might be as many as 50 cases in the area, but most of them haven't made Stoneburner's list, either because they haven't been reported, or he has been unable to confirm them himself, or the patients live outside Philadelphia and therefore belong on some other epidemiologist's list.

Stoneburner said he would like for all Philadelphia residents who have been diagnosed as having AIDS to call the Health Department at 686-5131. He's afraid the cases on his graph paper are only the tip of an iceberg.

About a dozen homosexual men had gathered in the Center City apartment of Dr. Nick Ifft, a physician who was afraid that AIDS might start to spread through the Philadelphia gay community the way it had in New York. Almost 75 percent of AIDS victims are gay men.

Among the people sitting in the cathedral-ceiling apartment, around a table with crackers and cheese, were Dr. Walter J. Lear, a local gay activist; Mitch Paul, a paramedic who each week visits Philadelphia's gay bathhouses, screening for venereal diseases, and Larry Jarrett, a well-known figure in gay motorcycle clubs, frequently referred to as the Levi-and-leather crowd.

The meeting had been called to discuss ways to educate local homosexuals about AIDS and to find a way to raise money for gay health needs.

"I think we should move as rapidly as possible," Jarrett said. "Too many people are asking questions." One of the leaders of a local motorcycle club had been killed by AIDS, and the people in this small subculture were terrified.

Ifft, a quiet, serious man who seemed shy even though he was leading the meeting, discussed the first draft of a proposed pamphlet explaining what AIDS was. Paul talked about ways to staff a 24-hour hot line for people who were confused or afraid or who needed advice on how to get medical help.

Jarrett, who was as aggressive in proposing ideas as Ifft was shy, jumped into the discussion again. He said he knew a gay professional writer who would volunteer his services to rewrite the medical material for the general public. In addition to a pamphlet, Jarrett proposed printing wallet-size cards that would give the symptoms of AIDS , offer advice on what to do if someone thought he had the disease and provide the hot-line number. He said he knew a gay printer who would do the work at cost.

Paul observed that even with all these contributed services, money would also have to be raised.

How about a fund-raiser, an evening of song and dance, a gala event that could be promoted by the leather clubs? Again it was Jarrett.

Should the money that is raised be used just for AIDS or a more broadly oriented gay medical program, someone asked. Jarrett thought AIDS should be featured in the campaign because it was "a hot subject. "

A more broadly based program was endorsed by Lear, a longtime crusader to get better medical services for the gay community. Money was desperately needed, he said, to treat venereal diseases, hepatitis and alcoholism, which were much more common medical problems among homosexuals than AIDS .

"We could get the Philadelphia Gay Men's Chorus and the Vanguard Vanities," Jarrett said, referring to a group of gay dancers and performers who give benefit performances each year to raise money for worthy causes.

How could they pull such a complicated thing together, someone asked.

Jarrett said he would take care of it.

Epidemiologists are increasingly concerned, as the epidemic continues spreading into new subcultures of society.

First seen more than three years ago among New York and California homosexuals, AIDS has slowly spread to intravenous drug users, Haitian immigrants, hemophiliacs, recipients of blood transfusions, and finally the children of Haitians and IV drug users.

Now there are two new groups - prisoners in jail and the female lovers of sick IV drug users.

The two lovers were reported by the CDC last month. This discovery was disturbing because it demonstrated yet another avenue for the epidemic's spread. But it was not particularly surprising since the CDC had seen this in homosexual couples.

The CDC was much more intrigued about the prisoners. There had been 16 of them, in several jails in New York and New Jersey. Fifteen were IV drug users and one was gay. Half of them had died.

Most of the prisoners didn't develop symptoms until they had been in jail for almost a year, which seemed to mean that they had caught the disease in jail. Either that or AIDS had a very long latency period.

The CDC prefers the latter theory - that the prisoners already had the disease when they entered jail - because other evidence also suggests that AIDS has a long latency period. Furthermore, all but a few of the prisoners had denied using drugs or having homosexual sex since entering jail. (The CDC, however, conceded in its report that it viewed such information with suspicion, since prisoners might be afraid to tell the truth about activities that violate prison regulations. )

It is terrifying to think that AIDS has a long latency period and that it is spread through the blood; this could mean that some blood supplies are already infected and that a great many people are ill but won't start feeling sick for perhaps a year from now.

In December a baby in California developed AIDS after receiving a transfusion from a donor who didn't realize that he was sick until five months later. Since then, the CDC has found seven more patients who developed AIDS after receiving blood transfusions. Is this a coincidence? Are any of the donors of this blood also infected?

These are questions the CDC is trying to answer, by examining all the donors and following them for a year to see if they develop AIDS - no mean undertaking, considering that there are as many as 75 donors in four states - New York, California, Texas and Connecticut.

Doctors consider it extremely unlikely that people who get a unit of whole blood - which comes from a single donor - will get AIDS from a blood transfusion, especially in Philadelphia, which still has far fewer cases than New York City, San Francisco or Los Angeles.

The nation's 15,000 hemophiliacs, however, are at far greater risk. They receive frequent transfusions of Factor VIII, a blood-clotting agent made from huge batches of plasma pooled from blood donated by thousands of people from all over the country, any one of whom might have AIDS .

AIDS has already struck 10 hemophiliacs nationwide, killing five. Many others have deficiencies in their immunity, which at least raises the possibility that they might be on the verge of getting an AIDS infection.

While it has not been proved conclusively that any hemophiliacs have gotten contaminated blood, the commercial blood firms that make the Factor VIII

concentrates are taking emergency measures.

Because almost 75 percent of AIDS victims are homosexual, the blood processors are now banning gays from donating plasma.

William P. Johnson, 44, a hemophiliac from Southampton, Pa., looked at the thin plastic tube leading to the needle in his arm, as he waited for the nurse to finish injecting the concentrate of Factor VIII. The blood of hemophiliacs does not clot properly because it lacks this component.

Johnson had been keeping up with the news and realized there was a chance, remote though it might be, that he was being injected with AIDS . Still, he had no choice; he needed the Factor VIII.

"Yeah, I'm concerned," Johnson said, "but not to the point that I will stop taking my concentrate. "

He looked at Jude Peuser, the nurse coordinator at the hemophiliac clinic at Thomas Jefferson University Hospital, and nodded as if to confirm his own statement. Ms. Peuser smiled, amused by Johnson's outgoing manner and the way he spoke almost with a physician's knowledge and authority when talking about hemophilia.

"As far as I'm concerned," he continued, while Ms. Peuser pushed more of the straw-colored fluid into his arm, "I need this medicine. It's given me a whole new lifestyle. I have a good job. Without it, I couldn't keep a job. " As products manager for a steel distribution company, Johnson had to travel a lot, making it impractical for him to take cryoprecipitate, a different type of Factor VIII that has to be kept frozen.

Whenever possible, the hospitals are now trying to switch patients back to cryoprecipitate, which was developed before the concentrate, but cryoprecipitate isn't as convenient for patients to use, nor can it be used as easily in controlling major bleeding.

Last month the hemophiliac clinic at Children's Hospital started delaying elective surgery that would require concentrate. And, clinic director Dr. Frances Gill said, many anxious parents have asked to donate blood for their children and have it held for them on a shelf. Logistics makes this impossible, partly because the blood is perishable, but the hospital will make batches of cryoprecipitates for its patients if their families can get enough donors together at one time to make a large batch.

"The patients are scared to death," Ms. Peuser said, explaining that she tries to reassure them but without minimizing the potential dangers. The concern is that some hemophiliacs will delay or stop treating their less serious bleeding episodes, suffering pain and possible joint damage.

"It's such a shame," she said. "They've got this wonderful pharmaceutical agent that helps them so much, but now they're afraid to use it. "

So far the doctors at the Jefferson clinic haven't seen any AIDS among their 225 hemophiliacs, but they are following four suspicious cases, Dr. Patricia Catalano, the clinic's associate director, said. While these patients cannot be clearly diagnosed as having AIDS , they do have a variety of symptoms that could be caused by AIDS but that could as easily be caused by some other, less serious ailment.

Last month the New England Journal of Medicine published studies by two laboratories, suggesting that Factor VIII concentrates depressed the immunity of hemophiliac patients, whereas the cryoprecipitates did not. The immunologic depression was similar to that found in AIDS , but nowhere near as severe, said the authors of the reports, Dr. Michael M. Lederman of Case Western Reserve University School of Medicine in Cleveland and Dr. Jay E. Menitove of the Medical College of Wisconsin in Milwaukee.

Even though Lederman and Menitove could not say that the depression was caused by AIDS , or even that any of the plasma donors had AIDS , the National Hemophilia Foundation moved swiftly. Four days after the paper was published, the foundation called for the banning of plasma donors from high-risk groups such as the homosexual community. The foundation's recommendations were quickly implemented by the blood-processing industry.

At the 30th Street Station, Walter Lear sat in the Amtrak bound for New York City.

A small white label was stuck to Lear's coat, signifying that he had just donated blood.

Lear had caused a stir in 1976, when he was Pennsylvania's regional state health commissioner, by announcing to the media that he was gay. Now he was headed for a news conference called by the National Gay Task Force to protest the blood processors' ban and the support of that ban by the National Hemophilia Foundation. The task force thought that the ban would not protect blood supplies but that it would certainly stigmatize homosexuals, who already have trouble gaining acceptance in the straight community.

"I gave blood because the public-relations people at the meeting thought it might be useful," Lear said. "I know that my blood isn't a danger, and I feel that it's wrong to discriminate against all gay men just because a small percentage of them have gotten sick. "

Lear pointed out that most of the homosexual victims of AIDS are promiscuous, having an average of 60 different sexual partners a year. They go to bathhouses and back-room gay bars where sex orgies are common and sex partners are anonymous. These are the "fast-lane" gays, who are believed to constitute 20 percent to 30 percent of all male homosexuals.

The train stopped a short distance out of the North Philadelphia station, and several minutes later two policemen came walking down the track, headed in the direction the train had just come from. A few minutes later the conductor announced that there had been a "personnel injury" and that the train would be delayed for an indefinite period, until the coroner arrived.

Lear was too involved in his own arguments to concern himself with the small drama unfolding in the train.

If banning gay donors did make the blood safer, Lear said, he would reconsider his position. But he said he didn't think such a move would work. Not only was there little proof that any of the blood was contaminated, he said, but a ban might actually provoke gays to give blood, as a strange form of protest.

Unlike the commercial blood processors, volunteer agencies like the Red Cross do not ban high-risk groups such as homosexuals. But last month, all across the country, the agencies started screening donors by asking whether they had AIDS , or whether they'd had intimate contact with someone who had AIDS , or whether they'd had suspicious symptoms, such as severe weight loss, lymph glands swollen for more than three months, or night sweats.

Dr. William C. Sherwood, director of the Red Cross' regional center here, said his agency isn't banning homosexuals, nor is it even asking people if they are gay, because evidence of blood contamination is very skimpy. More than 10 million units of blood are transfused each year, but only seven of the more than 1,000 AIDS victims are known to have received blood transfusions.

Even if the evidence were stronger, Sherwood said, he doubted that a ban would work. How could they identify homosexuals who didn't want to be identified?

The federal government is on the verge of making an official recommendation on this matter, and Lear is convinced that the assistant secretary for health, Dr. Edward N. Brandt Jr., will call for a ban.

"The pressure is on," Lear said, "and when there's pressure, politically something has to be done whether it's worthwhile or not. " Lear said such a government statement would be particularly damaging to homosexuals, because the public would interpret it to mean that all gays are bad and that they have bad blood.

Lear's train was two hours late getting into New York City. Lear reached the news conference after it had ended.

A few members of the gay task force were still there, however, chatting in the otherwise empty room. They greeted Lear when he arrived, telling him that only representatives of the wire services and a couple of broadcast stations had come. No reporters from the New York papers had covered the meeting, which further convinced the homosexuals that the media were prejudiced against them.

Lear chatted a bit and then caught the next train back to Philadelphia, the blood-donor label still stuck to his coat.

It was a little before 7 a.m. About 50 operating-room nurses, many already in their green scrub suits with their hair wrapped up in paper hats, sat in the tiered amphitheater, waiting to hear what the experts had to say.

A few days earlier, as a neurosurgeon was about to do a brain biopsy on an AIDS patient, rumor had spread through the operating room that the man had a highly contagious, lethal disease, so dangerous that another hospital had refused to operate on him.

The Jefferson nurses didn't refuse to participate in the surgery, but afterward the neurosurgeon, Dr. Bruce E. Northrup, had noticed that they seemed unusually quiet when he walked into the lounge.

An orderly had come up to him, holding out her red and swollen hands, and said, "Look at my hands. " She had just washed down the entire operating room with an especially stringent cleaning fluid to destroy the mysterious bug. The nurses had said they were worried for other patients being brought into the operating room, as well as for the staff.

Northrup decided he had better address the nurses, before the rumors got out of hand. He asked Dr. Stephen P. Hauptman, chief of the immunology laboratory, who had been studying AIDS , to participate in the discussion.

Standing at the podium, looking up at the nurses, who were looking down at him, Northrup recounted the history of the case. A suburban hospital had admitted the patient, a young homosexual man who had AIDS and an unexplained paralysis of parts of his body. In an attempt to make a diagnosis, surgeons had planned to do a biopsy - to take a sample of brain tissue for analysis - but the anesthesiologist had balked.

" 'Not on your life,' " Northrup quoted the anesthesiologist as saying. " 'I know about this and I don't want to put him to sleep. ' " So the infectious-disease doctor at the smaller hospital had called Jefferson and asked if someone there would see his patient.

Northrup paused for a second, giving his audience a chance to consider what he had said. The nurses looked back at him silently, very serious. Northrup continued.

"We considered the risks. I called our infectious-disease people. I called our anesthesiologist and he said he would put him to sleep. I called the Centers for Disease Control and I called Dr. Hauptman. Everyone thought that it was safe. "

So they operated and were able to make a diagnosis. The biopsy, Northrup said, showed that the man had PML (progressive multifocal leukoencephalopathy), a neurological disease that was beginning to turn up in AIDS patients. The prognosis was not good. This was the second time in only a few months that Northrup had found PML in an AIDS patient. The other patient had died.

Hauptman followed Northrup to the podium. He said that he and the 13 people working with him had been studying specimens from AIDS patients for nine months, and so far none of them had gotten sick. But, he added, the CDC is so concerned that AIDS will break out among lab personnel that it has issued detailed instructions on the safest way to handle the material. Hauptman said he did not think Jefferson's other surgical patients or its operating-room staff were at risk because the normal sterile procedures routinely used for surgery would protect them.

During the question-and-answer period, the nurses talked about protecting other surgical patients. They also talked about the chance that blood- transfusion supplies could become infected and about the likelihood that the number of AIDS cases would continue to increase in Philadelphia. Also, there was the question of ethics, which Northrup addressed.

"The call from the other doctor was clearly a call for help," Northrup said. "And you can't turn your back on it. The golden rule is, Treat the patient like you want to be treated. You can't close the door on a patient

because you don't know much about the disease. "

The technologist in the virus laboratory at Children's Hospital used plastic gloves and kept the urine-specimen bottle under a glass hood, to protect herself from possible infection.

The urine had come from a patient at the Veterans Administration Hospital. The man, a homosexual in his 30s, had AIDS and, as a result, a serious lung infection. It was hoped that the urine sample would reveal the microorganism that was causing AIDS , but the laboratory probably would not find anything. So far, Dr. Harvey Friedman had checked a dozen patients like this without

finding a clue.

Sucking up some of the yellow fluid into a pipette, Deborah Nemerofsky transferred a few drops into five test tubes containing kidney and lung cells

from humans and from mice. Eighty percent of the viruses known to cause disease in humans will grow in such cells.

Every few days the lab people would look at the test tubes under a microscope, to see if the clear, smooth surfaces of the cells had been disrupted, indicating that something was growing in them.

Since all previous attempts to grow the AIDS organism have failed, it is likely that the bug does not thrive in these cultures and that scientists will have to find a new approach.

Virologists at the CDC have injected a variety of AIDS specimens - white cells, biopsied tissue, semen - into mice and primates, in hopes that the microorganism would make its presence known by making the animals sick. If only the bug could be grown in animals, it could be isolated, but so far none of the inoculated animals has gotten sick.

Because AIDS is apparently difficult to grow, Chris Forrer, the laboratory supervisor, prepared slides from the urine sample to be placed under the electron microscope, which can magnify cellular particles 50,000 times.

All of this work at Children's Hospital was done two weeks ago. Every day or so since then Ms. Nemerofsky has put the cells under the microscope and looked for disruption in their surfaces. The surfaces have remained clear and smooth.

And under the electron microscope, all Ms. Forrer has seen are urine crystals, broken bits of cell membrane and other cellular debris. There has been nothing suspicious, nothing to suggest that she might be looking at the bug that causes AIDS .

The technologists will continue to inspect the specimens for the next few weeks, even though the patient has since died.

The gala fund-raiser planned at Dr. Nick Ifft's apartment turned out to be a tremendous success.

About 300 people crowded into the DCA, a gay club on 13th Street off Locust. Practically all men, some of them dressed in leather bomber's jackets and crushed combat pilot hats, they sat at the three bars in the large room, stood on the bar stools or sat along the edge of the small dance floor.

Jarrett was there, dressed in a bow tie and tails. Standing dignified and proud behind a microphone, he was one of the two masters of ceremony and would announce the acts and help auction off the items that had been donated to raise money.

One hundred and sixteen people had helped pull the show together in only two months - Jarrett had counted every one of them - and 34 people and businesses had donated items to the auction.

Neatly folded on the bars, for people to take, were wallet-size cards. White type on a black background spelled out " AIDS . " Underneath was the hot- line number: 232-8055.

The performance began with the cast of the Vanguard Vanities marching on stage - two dozen dancers dressed in white trousers and black shirts - while an unseen voice read the words Jarrett had written.

The voice talked about AIDS and the grim details, but there was a positive message, too.

"This is a celebration of gay people helping gay people," the voice said, ''a celebration of life. "

Next came the Gay Men's Chorus, 21 men in white business shirts and red ties, their 21 images reflected in the mirrors that constituted the room's ceiling.

"When you walk through a storm hold your head up high," they sang.

Impresario Henri David came out and said: "I'm here for AIDS . This is a problem. But we've licked bigger problems. "

With the money from the auction and entrance fees, more than $5,000 was raised for Philadelphia Community Health Alternatives, a group organized to promote better medical care in the gay community. The money will go for educational materials and perhaps for research into AIDS .

The event was so successful that the group, in conjunction with the New York City AIDS group - Gay Men's Health Crisis - is sponsoring another gala in Atlantic City on March 26.

Every week, the larger hospitals, especially those connected with medical schools, give special lectures called "grand rounds. " Usually the subject is a particularly interesting, difficult or frightening disease that someone on the staff is dealing with.

In Philadelphia, AIDS has become a popular topic at these conferences.

Recently, Dr. Donald Rubin, a young infectious-disease specialist at Penn, presented an AIDS case at grand rounds; he drew one of the largest attendances of the year. More than 250 doctors and nurses came to the hospital's large

amphitheater to hear Rubin give the medical details on an AIDS patient who had Pneumocystis carinii, a rare form of lung disease.

"What can we say about treatment? " Rubin said. "Little can be said at this time. "

As for causative factors, Rubin reviewed the epidemiology of AIDS , pointing out that sexual promiscuity seemed to be associated with the disease. He said that gay AIDS patients average a lifetime total of 1,160 different sexual partners, compared with only 31 partners for a group of heterosexuals matched for age, geography and marital status who did not have AIDS .

A gasp filled the auditorium, and then Rubin quietly added:

"It has been pointed out that 31 is no trivial figure. "

Two weeks ago, the prestigious College of Physicians of Philadelphia devoted its monthly lecture to AIDS . The speaker was Dr. Anthony S. Fauci, chief of the laboratory of immunoregulation at the National Institute of

Allergy and Infectious Diseases. He is one of the most noted of the AIDS researchers.

About 200 physicians and their spouses, many of them in evening dress for the dinner that would follow, sat in the formal, high-ceilinged room and heard Fauci say that no AIDS victim has ever regained his immunologic defenses. This probably means, Fauci said, that some disease will eventually kill each of them, that the mortality for AIDS will probably reach 100 percent.

The next day, Hauptman presented the case of an AIDS patient during grand rounds at Jefferson. It was the same patient he had spoken to the nurses about a few weeks earlier. The man was still alive, but becoming progressively weaker.

Again wearing his long white coat, and using a light pointer to refer to charts flashed on a screen, Hauptman told an audience of about 150 people about AIDS .

Hauptman thought that AIDS victims might have a genetic defect that left them vulnerable to a new microorganism that was harmless to other people. He told about how he had started experiments with agents that might compensate for such a defect and how he was transfusing genetically matched white cells into the brain-biopsy patient. The hope was that the white cells from the man's sister would do the work his own white cells had failed to do.

After each of these talks, the scene was always the same. A handful of doctors would huddle around the speaker, ask a few technical questions and then tell how they currently had one, two or three patients who apparently had the syndrome.

Many other such lectures are planned. In April, the Philadelphia County Medical Society will devote an entire evening to hearing about AIDS .

If current trends continue, by the time of the April meeting the number of cases in Philadelphia will have doubled again. Nationally there will have been 300 more victims, and 100 more deaths.