Troubling Ethnic Link : AIDS Virus No. 2: More Tough Choices

BOSTON —  It is only an isolated case, but to those who remember the first few puzzling illnesses in the early 1980s that presaged the AIDS epidemic, it raises some familiar, troubling issues.

As they were then, public health officials are dealing with the possibility of a deadly threat that respects no one’s politics or privacy. But even the public discussion of this microscopic invader raises equally potent dangers of overreaction and of subjecting a vulnerable minority to crippling stereotypes.

Massachusetts Cases

Massachusetts recently recorded its first case of a resident falling ill because of HIV-2, an AIDS virus discovered in 1986 and almost unheard of in the United States. He is a 39-year-old immigrant from Cape Verde, a Portuguese-speaking nation off West Africa, a region where HIV-2 is sweeping some countries at rates higher than the HIV-1 virus, the primary cause of acquired immune deficiency syndrome, or AIDS, in America.

From West Africa, HIV-2 has begun showing up in low but alarming numbers of people in Brazil and Portugal, the countries to which Portuguese-speaking West Africans most often travel.

The only other identified carrier of HIV-2 in Massachusetts--a middle-aged woman who has not developed AIDS--is also a Portuguese speaker from Cape Verde.

Massachusetts’ population of Cape Verdeans is sometimes estimated as being larger than the 300,000 who live on the islands themselves, and the New England area sees a regular flow of visitors back and forth.

All that health authorities have now are inconclusive bits and pieces of evidence that HIV-2 might be spreading silently among these people. From these fragments they must make decisions that could have implications for decades to come.

If HIV-2 holds the potential of unleashing a new AIDS epidemic, public health officials, researchers and blood banks want to act quickly and decisively enough to stop it. But that also could create an impression that the Cape Verdeans, and to some extent the Portuguese-speaking community at large, are a high-risk group, carrying the same stigma that unfairly burdened Haitians and gays earlier in the decade.

“It is touchy. It’s sort of a replay, with a different cast of characters, and different nuances,” said George Grady, chief epidemiologist for the State of Massachusetts. “I’ve seen this movie before, as they say.”

Perhaps 15% of New England’s people can trace their ancestry to Portugal or its colonies. New arrivals have come to the region for more than a century, drawn first from Portugal and the Azores Island by the whaling industry, and later by the ties of language and history they shared with those who had already settled here.

In recent years, the community has grown ethnically and racially more diverse as immigrants to Portuguese-speaking neighborhoods have come from former Portuguese colonies such as Brazil, Cape Verde, Guinea-Bissau and Angola.

For the most part, they tried to meld quietly into neighborhoods, cities and towns--until 1984, when national attention was focused on the trial of four Portuguese immigrants who were convicted of gang-raping a woman on a tavern pool table in New Bedford.

Protests Over Trial

Thousands marched in the streets then to protest that an entire proud, religious and hard-working community was being held to account for the unspeakable actions of a few. Now, many are asking angrily, do one or two cases of viral infection mean that they are to be blamed for spreading the most feared plague of the 20th Century?

“I don’t see why any of these (AIDS) cases have to get in the newspapers,” said Mary Theresa Silvia Vermette, a teacher and scholar of Portuguese culture whose grandparents immigrated to the New Bedford area from the Azores Islands.

Vermette, who organized a recent museum exhibit on the influence of Azorean whalers, complained that Portuguese contributions to the fabric of life in New England are being lost as inaccurate and unfair stereotypes are revived.

“I think that we don’t need that kind of publicity,” Vermette said. “It’s translated into ‘those dirty Portuguese are bringing AIDS into this country.’ ”

Yet veterans of the early battles to slow the advance of AIDS cannot forget the hard lessons and missed opportunities of those times.

The national AIDS death toll has surpassed 54,000, and critics say that many lives were lost because high-risk groups, such as promiscuous homosexual men, were unwilling to accept early indications that they should change the behavior that was putting them in danger.

At the same time, some now insist, state and federal governments failed to meet their responsibility to mount aggressive and explicit educational campaigns. Further energy was wasted during those first critical years on bureaucratic infighting among researchers, blood banks and government agencies.

“This is 1981, all over again,” warned Jose Moura, executive director of the Somerville Portuguese American League, who has called for screening the entire blood supply for HIV-2 as it is already for the more common HIV-1 virus.

Tests specifically designed to detect HIV-2 should also be made available in this country, as they are in Europe, Moura said. In the United States, HIV-2 testing is done only in research labs.

“We now have the technical capability (to stop the virus from spreading), and I think we should have learned something from the pain and suffering we have endured as a nation,” said Moura, whose organization set up the nation’s first Portuguese-language AIDS Hot Line.

The 39-year-old West African, whose case was reported in the May 25 issue of the New England Journal of Medicine, was not in any of the usual high-risk groups: He said he was heterosexual, not a user of intravenous drugs and had never had a blood transfusion.

He began suffering from a series of infections and lost 22 pounds in early 1988. They were the symptoms of AIDS, but two AIDS tests turned up negative. The man’s illness flared up and waned for almost a year before researchers at the Harvard University Medical School finally found the answer--HIV-2.

The outwardly healthy middle-aged woman was found to be infected with HIV-2 after she took a test for HIV-1 that produced inconclusive results.

A third case has shown up in the state’s program of anonymously testing all newborn babies’ blood, which suggests the mother is infected. The Massachusetts Department of Public Health does not know who or where that infant is, however.

Accidental Discoveries

All three Massachusetts cases--out of fewer than 10 known cases nationwide--were discovered virtually by accident, which raises the question of how many more cases remain to be discovered. The accuracy of the AIDS test now being used in this country to detect HIV-1 is already being questioned, and it is clear that it is even less effective for HIV-2. It misses the second virus in about one-third of those infected.

At the request of Moura and several others, the Massachusetts Governor’s AIDS Task Force acknowledged the potential problem in a public discussion of HIV-2 a few weeks ago. Task force members agreed there was a need for more testing in the Portuguese-speaking community, particularly among intravenous drug users and those at risk of contracting sexually transmitted diseases.

Since then, Moura and the task force have been targets of vehement criticism from other leaders of the Portuguese-speaking community.

“That’s nonsense. I don’t think the Portuguese are more exposed than any other group, just because they speak the same language,” said Manuel Ferreira, editor of the weekly Portuguese Times newspaper in New Bedford. He and others have accused Moura of sensationalizing the issue as leverage for winning grant money for his community services agency.

Just as the AIDS epidemic has demonstrated the dangers of reacting too slowly, early experience with AIDS also showed that association with the virus can carry an unfair stigma as well. Earlier in the decade, scattered reports and rumors had it that Miami department stores were discouraging Haitians from touching merchandise, and that some Manhattan restaurants were losing business because their customers feared even casual contact with waiters they suspected of being gay.

HIV-1 proved that it was wrong to assume that a virus would pick its victims solely according to sexual preference or ethnicity. At the other extreme, researchers say they are increasingly positive that the disease cannot be transmitted by casual contact.

“Education needs to be targeted, very clearly, but we’re all equally at risk. I use the definition of AIDS as a disease of behavior. It’s not a moral issue,” said Paul Cassidy, program director of Project CARE, the AIDS education and advocacy program of the New Bedford Area Center for Human Services.

Those who work with AIDS education note that stigmatization could put the Portuguese-speaking community on the defensive and thus make its people less receptive to AIDS education efforts even as their need for information is growing along with everyone else’s.

Outside Advice Rejected

“The hardest thing is that people get upset when someone from the outside tries to come in and tell them what their problem is,” Cassidy said.

All in all, Grady said, “it is a societal question, and it is personal for the people who are in the hot seat, worried about whether they are being perceived as honest and forthright, or whether they are alarmist.”

Nor does anyone want to add unnecessarily to public health costs, particularly if resources would have to be diverted from the overall war against AIDS.

Dr. Myron Essex of Harvard University, who is credited, along with a French doctor, with discovering HIV-2, noted that both viruses are transmitted through the same activities--the most risky of which are sharing hypodermic needles and engaging in anal or vaginal intercourse without using condoms.

While Moura and others advocate screening the entire blood supply for HIV-2, “more cases of AIDS would be prevented by using that money to educate college kids, devoting more attention to education against HIV-1,” Essex said.

Still, Essex hedged. “It might be different three years from now,” he said.

The threat of HIV-2 infection was apparent enough a year ago to compel the Food and Drug Administration to urge blood banks to refuse donations from people who had emigrated from West Africa since 1977 or their sex partners.

Dr. Mark Popovsky, medical director of the American Red Cross Northeast Region, said HIV-2 is viewed as “a potential threat to the blood supply, but when you actually look for hard evidence of risk, it just isn’t there yet.”

Thus far, he said, it does not appear that the danger warrants subjecting the blood supply to another test, which he said would cost tens of millions of dollars.

To be more certain, however, the regional office recently decided to conduct a study: Over a several-weeks period to begin in the next few months, the Red Cross will screen the blood of every Massachusetts donor specifically for HIV-2.

The Centers for Disease Control in Atlanta are putting together their first updated report on HIV-2 since the first U.S. case, a Cape Verdean woman in Newark detected in 1987. While the results may not be ready for several months, “we have not found a single HIV-2 infection in a U.S. citizen,” said Dr. Scott Holmberg of the centers’ AIDS program.

Nonetheless, it is clear that HIV-2 is gaining a toehold outside West Africa, most notably in Portugal and Brazil.

By the end of last year, 10% of the 199 people in Portugal known to have AIDS were infected with HIV-2.

Portugal’s largest group of HIV-2 infections thus far, the Boston Globe reported, came to light in a yet-unpublished government study of 5,139 people in Lisbon who did not have obvious AIDS symptoms. Of the 118 subjects found to be infected with HIV-2, only 38 had been to Africa or had any contact with Africans.

A medical team studying AIDS in Brazil found combined infections of HIV-1 and HIV-2 in 3% of the 133 AIDS patients it studied, according to the team’s report in the April 13 New England Journal.

The job of deciding how to fight HIV-2 is complicated by lingering questions over how vicious the virus really is.

While HIV-1 has raged in Central Africa, bringing the fatal illness to virtually everyone infected, many West Africans known to have been infected with HIV-2 for years have yet to suffer any symptom of AIDS.

In French-speaking Senegal, for example, HIV-2 infection is 10 times as prevalent as HIV-1, but the first virus accounts for more than half the AIDS cases, said Harvard epidemiologist Richard G. Marlink, part of the team that diagnosed the Massachusetts man’s illness.

Marlink said that a study of a group of 1,500 Senegalese prostitutes begun in 1985 found that none of those infected with HIV-2 had yet developed any significant symptom of AIDS.

Does that mean that HIV-2 is less virulent than HIV-1? Or that it is dormant in the body for longer than HIV-1, so that unsuspecting carriers have more time in which to infect others?

“Nobody knows,” said Marlink.

TRAVEL CURBS FOUGHT--Barriers to AIDS-infected travelers are opposed. Page 25