The disease detectives puzzle over methods of control

First published on Jan. 9, 1983.

The research immunologist entered the dark lounge of the small hotel opposite the Centers for Disease Control and ordered a martini. Dr. Roger Enlow was tired from the plane flight from New York, and concerned about the next day's meeting.

Enlow waved to someone he recognized. The hotel was filling with familiar faces - researchers, blood bank physicians, government scientists, executives  from firms that produce blood products.

They had flown in from all over the country for this meeting, a meeting hastily arranged by federal health officers.

The Centers for Disease Control (CDC) were concerned that the nation's blood transfusion supply was threatened by a lethal epidemic, one that had already struck more than 800 people, killing more than 300. The federal agency had to find a way to protect recipients of blood transfusions.

This would be difficult, because this epidemic was a mysterious disease and its cause was unknown. It killed by stripping victims of their ability to fight infection.

Most of the victims were homosexuals, but in recent months the epidemic had also struck Haitian immigrants, intravenous drug users, the babies of Haitians and of drug users and, most disturbingly, hemophiliacs and others who had received transfusions.

"How do you think the meeting's going to go? " Enlow was asked.

Looking down at his glass, the immunologist shook his head and said he was worried.

He planned to propose that all donated blood be tested, to see whether it might have come from an infected person. He didn't think the blood processing industry would agree, though. He thought the industry would push instead for a nationwide ban on homosexuals giving blood.

Enlow was against such a ban. It wouldn't protect the blood supplies, he said, but it would certainly stigmatize all homosexuals. It reminded him of the days when blood banks used to reject donations from blacks, for fear of syphilis. Enlow was prepared for an all-out fight.

Enlow's feelings were so strong because he came to the meeting not just as a scientist from the Hospital for Joint Diseases in New York, and not just as an expert on this new epidemic, but also as a representative of the gay community. Enlow was gay.

Enlow represented just one of many vested interests at the meeting Tuesday.

All of them wanted the safest possible blood, but all of them wanted it without any undue sacrifice by their own particular group.

Enlow wanted to keep the homosexuals from being stigmatized.

The hemophiliac associations wanted to avoid increasing the cost of blood products or interrupting their supply.

The blood-processing companies and the blood banks wanted to avoid encumbering the blood-collecting process with additional costly tests.

The CDC was mainly interested in flagging the dangers to public health and alerting society, regardless of what special interests got hurt. Or at least that was the ideal.

The meeting started promptly at 8:30 Tuesday morning in Auditorium A, which was the smaller of the CDC's two auditoriums but still quite large. The room was half filled by four long tables arranged in a square, so there was no head table and all 38 people sitting around the square were of ostensibly equal importance.

About 150 observers crowded the remaining half of the room, occupying all the folding chairs and standing at the rear.

Most of the discussions and arguments would come that afternoon. The morning would be spent listening to the latest grim details of the epidemic. The disease in question was called Acquired Immune Deficiency Syndrome ( AIDS ) because it impaired its victims' immune system, leaving them hopelessly vulnerable to infections.

"We now have 881 cases," said Dr. Harold Jaffe, addressing the gathering from in front of a large movie screen that displayed the figures. "Fifty-nine percent of cases have been reported since January of last year. "

As is customary at medical gatherings, Jaffe, a member of the AIDS task force, spoke in almost a monotone, with no display of emotion or other sign of the frightening nature of his data. He neglected to point out that the number of cases was continuing to double every six months.

Most of the victims, 74.6 percent, were gay, Jaffe said. No one knew why. The only clue was that the homosexuals who had AIDS were unusually promiscuous. They had had sex with an average of 61 different partners each year, as compared with an average of 26 partners a year for other homosexuals surveyed. They were more likely to meet their partners in bathhouses, where sex orgies were common. And they favored sexual practices of a type more likely to cause disease or produce physical injuries through which microorganisms might enter the body.

The danger to hemophiliacs - which was the main reason the meeting had been called - was addressed by Dr. Bruce L. Evatt, who had represented the CDC at a similar emergency meeting last July. That was when the first three hemophiliacs with AIDS had been identified. In July, it had been decided to take no action but to wait and see whether more hemophiliacs developed AIDS . They had.

AIDS had now struck eight hemophiliacs, Evatt told the gathering, and an additional two cases were under investigation. Eight of the 10 victims were dead, he said. In only six months, AIDS had become the second leading cause of death for hemophiliacs, second only to uncontrolled bleeding.

The morning session ended with Dr. James W. Curran, leader of the CDC's task force on AIDS , explaining the various possible ways of protecting the nation's blood supply.

Without saying what course he favored, Curran presented several options. The two main options were these:

Blood banks and commercial processors could stop using blood from high-risk groups, primarily homosexuals. Or, they could test the blood after they got it, to see whether the donor was a likely carrier of AIDS .

Curran ended his talk with a chilling observation: The incubation period for AIDS appeared to be more than a year. This meant that no matter what the group did now, its impact would not be felt for at least a year.

In other words, everyone who will come down with AIDS during 1983 - which could be more than 1,000 new victims if present trends continue - is already infected.

Enlow, representing the American Association of Physicians for Human Rights, a gay group, and Bruce Voeller, founder of the National Gay Task Force, spoke up as soon as the floor was opened to discussion.

Enlow called for using the blood tests. The ultimate goal is to find the cause of AIDS , he said, but blood supplies must be protected in the interim.

"It must be remembered that the homosexual community is a diverse group," Voeller said, looking across the empty expanse of the square to the people at the table on the other side. Just as sexual activities among heterosexuals vary considerably, he said, so do they among homosexuals.

All the evidence, he said, suggests that AIDS is concentrated among the ''fast-lane gays," the homosexuals who frequent the bathhouses, who have many different sexual partners, who practice sexual acts known as "fisting" and "rimming. " All gays should not be considered a high risk, he said. Voeller said he did not know what percentage of gays could be defined as fast lane, but he thought that even in big cities it was less than 20 percent.

No one pursued this. The discussion veered off in other directions.

The value of blood tests was questioned by Dr. Jay E. Manitove of the Council of Community Blood Centers, which represents about 25 percent of the nation's blood banks.

It's not known, he said, how well the tests would work in picking out asymptomatic AIDS victims; the tests were only an indirect indication that the subject might be infected.

Actually, the proposed tests did not identify people infected with AIDS at all; they identified people infected with Hepatitis B virus, which causes liver infections. The test really had nothing to do with AIDS.

But, it was argued, identifying Hepatitis B victims might be almost as good, because nearly everyone who has AIDS or chronic lymphadenopathy (a common problem among AIDS victims) also has been exposed to the hepatitis virus sometime in their lives. In fact, using two blood tests that identified Hepatitis B in different ways on AIDS and lymphadenopathy patients, the CDC's Dr. Thomas Spira had successfully identified 98 percent of the AIDS patients.

He had also tested apparently healthy heterosexuals, to see if the test would inadvertently rule out as blood donors people who did not have AIDS or lymphadenopathy. Only 5 percent of these healthy people tested positive for having had hepatitis and would be unnecessarily prevented from giving blood.

Dr. Aaron Kellner of the New York Blood Center opposed widespread testing by raising a new issue: money. Kellner said it would cost New York City more than $5 million to implement these blood tests. This included the cost of the tests, the cost of the paper work and the value of blood discarded in the 5 percent of cases that tested out false positive.

"We must be careful not to overreact," Kellner said. "The evidence is tenuous. "

After all, he said, only a handful of hemophiliacs had been stricken. And only three non-hemophiliacs who had received blood transfusions had developed AIDS . Even in these cases, no cause-and-effect relationship had been proved.

"When will there be enough cases to act upon?" demanded Dr. Donald L. Francis, who tests AIDS specimens in chimpanzees and marmosets in the CDC's Arizona laboratories. Referring to the meetings in Washington last July, he asked, "If there still aren't enough cases, then what is the threshold for action?"

"There is no doubt that we have a problem," Evatt insisted. Before 1982, he said, no hemophiliacs had died with symptoms remotely similar to those of AIDS . Now AIDS was the second leading cause of death. Other data reported by Evatt made the situation look even more distressing for the 15,000 hemophiliacs in the country who rely on transfusions of Factor VIII, a blood component that helps their blood clot.

In five independent laboratory tests, Evatt said, 30 to 50 percent of hemophiliacs tested had the same type of immunologic deficiency that AIDS patients have. The deficiency was not as severe, but it was clearly abnormal.

An additional nine hemophiliacs had symptoms similar to those of many AIDS patients in the early stages of their illness - symptoms such as chronically swollen lymph glands, (lymphadenopathy) weight loss, fever. Some infectious- disease experts even think that chronic lymphadenopathy, lasting for three or more months, might be one of the early signs of AIDS .

"It's a hell of a mess," said Dr. Selma Dritz of the San Francisco Health Department. One-sixth of the men in that area, she said, are gay. "We get a lot of hysterical calls; we don't know what to tell donors."

Checking back on records, Dr. Dritz and Dr. Herbert A. Perkins of the Irwin Memorial Bank in San Francisco discovered that 11 of the bank's donors had AIDS . One of the recipients of blood from a 46-year-old AIDS -infected donor, a 20-month-old baby, had also developed AIDS.

The meeting broke for lunch. It was clear that the CDC would have trouble getting a consensus for its recommendations to Dr. Edward N. Brandt Jr., assistant secretary for health in the Department of Health and Human Services.

The 38 people seated at the square could hardly define the problem, let alone agree on a solution.

As Enlow gathered his papers and prepared to go to lunch, Manitove came over with Kenneth Woods, president of the Council of Community Blood Centers. Manitove did the talking while Woods listened.

Manitove said he could understand how the homosexual community felt, being struck by this disease, and how the public might see it as being self- inflicted, and how some might consider this as a stigma, but it didn't have to be all negative.

"OK," Manitove proposed, " . . . become part of the mainstream and become responsible. Take this and turn it around and say 'We are becoming responsible. We are not going to donate. We are part of the society. ' '

"Why do you think my name is on so many of the things that are written about this thing," Enlow said. "It's vastly different . . . "

Manitove cut him off.

"It could be a positive image," Manitove said.

"There's a big difference," Enlow said, firmly continuing with his thought, "between doing that and making it a matter of national policy. There are enormous distinctions. " He even sounded angry.

"National policy! " Manitove said. "Roger, we're dealing with interim policy. "

"We all know," Enlow said, still in a firm tone, "that interim approaches are longstanding. We all know that they are used repeatedly as tools to deal with people in other ways. "

"It would be a little less than responsible to do nothing," Manitove said, becoming firmer himself.

"I didn't say do nothing," Enlow said. "I argued vociferously for an approach that gets to the problem. "

They continued for several more minutes as Auditorium A emptied and Woods looked on.

The CDC came no closer to a consensus in the afternoon session. If anything, the opposing sides seemed more locked into their positions.

Restating that blood testing would cost New York City $5 million a year, and that it would cost $100 million nationally, Kellner of the New York Blood Center argued for pilot studies in New York, Los Angeles and San Francisco, where most of the AIDS victims lived.

The different centers, he said, could experiment with different blood tests and different methods of screening out the fast-lane gays as donors. Manitove supported this idea.

Enlow asked: How are you going to find out who's in the fast lane? How are you going to define it?

"Sex in our society is taboo," Enlow said, "and no one will volunteer that information. "

Dr. Clyde McAuley, who had been sitting in one of the chairs at the side of the room, stood up and said that his firm, the Alpha Therapeutic Corp. of Los Angeles, had come to grips with the problem.

Starting this January, he said, his firm had stopped accepting blood from high-risk groups, including all gays, whether they were in the fast lane or not. Alpha is one of the major firms that produces Factor VIII, the blood- clotting factor that most hemophiliacs use. McAuley said he hoped other manufacturers would follow suit.

"It's absolutely wrong to screen on the basis of sexual preference," said Dr. Donald Armstrong of the New York Group on Kaposi's Sarcoma and Opportunistic Infections, a group formed to study these diseases, which commonly strike AIDS victims. Armstrong also questioned the value of the tests suggested by the CDC, saying it was more important to find out what causes AIDS .

Dr. Joseph R. Bove, chairman of the transfusion disease panel of the American Association of Blood Banks, supported the plan for pilot studies. If nothing else, the studies would buy them time to find out what was causing the disease.

"I hope we don't become ostriches here," said Dr. David J. Sencer, New York City's health commissioner. "If we don't do something, it will be taken out of our hands. People in New York City are already using this to attack gay rights. We have got to come to grips with this issue and not just stick our heads in the sands. "

No closer to a consensus than he had been at the start of the day, the chairman of the meeting, Dr. Jeffrey P. Koplan, called for a vote on recommendations.

Nothing came of it.

Every time someone tried to put together a resolution, it was modified so many times and in so many ways that no one was sure what they were voting on.

Voeller proposed one resolution he had written out:

"With the exception of individuals with AIDS or lymphadenopathy, the targeting of specific groups for exclusion from blood or plasma donation is unjustified at the present time. "

A roar of "no's" came from the corner of the room where McAuley and other representatives of the blood processors sat.

There was more discussion, but the airport bus was boarding outside, and the people who had flown in from all over the country grabbed their suitcases and started leaving Auditorium A.

Once again, back in the hotel across the street from the CDC, Enlow and Voeller talked about the meeting.

They were happy that the group hadn't voted to ban homosexuals, but they were disappointed that other measures hadn't been agreed on, to protect the blood supply.

Evatt and Curran of the CDC felt more positive. The meeting, they said, had made everyone in the industry aware of the problem. It is difficult, if not impossible, they said, to achieve a consensus in such a large group with so many vested interests.

Once they got together among themselves, the CDC doctors said, they could reach some agreement. In the meantime, the CDC in conjunction with the National Institutes of Health and the Food and Drug Administration would be making recommendations in the next few weeks to the assistant secretary for health. Curran and Evatt declined to say what recommendations were likely, but they agreed that blood testing was still a possibility.

Last Thursday, two days after the meeting in Atlanta, the American Association of Blood Banks met in Washington, with representatives of the CDC, the gay community, the American National Red Cross and the Council of Community Blood Centers. Together the three blood groups represented practically all major blood banks in the country.

The association refused to say what happened, pending approval by its board of directors. But it was learned that this time there was more agreement. The group decided against testing blood, because of the high cost, because the tests are somewhat inadequate, and because the evidence is still skimpy that AIDS is spread through transfusions of whole blood.

The group did, however, advise that local blood banks ask all prospective donors if they have experienced chronically swollen glands, severe weight loss or other symptoms suggestive of AIDS .

Also, Enlow and Voeller agreed to step up an educational campaign in the gay communities, to discourage fast-lane gays from donating blood.

As for banning all homosexuals from giving blood, the association agreed that such a practice would not work and was undesirable.

Part of the agreement read:

"There is currently considerable pressure on the blood banking community to restrict blood donations from homosexual males. Direct or indirect questions about a donor's sexual preference are inappropriate."