MAY 8, 1996

Outline and References from Statement by Phillip E. Johnson, Professor of Law, University of California, Berkeley.

Summary: The nature and extent of the AIDS epidemic has been misprepresented to the public by federal agencies, with the acquiescence of much of the media. The legislature should do what it can to encourage support for research that provides an independent review of the nature of the epidemic and the actual risk that AIDS presents to the public in general.

A. The Wall Street Journal front page article of Wednesday, May 1, 1996

Title: Health Hazard: AIDS Fight Is Skewed By Federal Campaign Exaggerating Risks ---Most Heterosexuals Face Scant Peril but Receive Large Portion of Funds ---- Less Goes to Gays, Addicts

By Amanda BENNETT and Anita SHARPE

In the summer of 1987, federal health officials made the fateful decision to bombard the public with a terrifying message: Anyone could get AIDS.

While the message was technically true, it was also highly misleading. Everyone certainly faced some danger, but for most heterosexuals, the risk from a single act of sex was smaller than the risk of ever getting hit by lightning. In the U.S., the disease was, and remains, largely the scourge of gay men, intravenous drug users, their sex partners and their newborn children.

Nonetheless, a bold public-relations campaign promised to sound a general alarm about AIDS, lifting it from a homosexual concern to a national obsession and accelerating efforts to eradicate the disease. For people devoted to public health, it seemed the best course to take.

But nine years after the America Responds to AIDS campaign first hit the airwaves, many scientists and doctors are raising new questions. Increasingly, they worry that the everyone-gets-AIDS message -- still trumpeted not only by government agencies but by celebrities and the media -- is more than just dishonest: It is also having a perverse, potentially deadly effect on funding for AIDS prevention.

* * *

After considerable soul-searching and debate, officials fixed on a dramatic approach they believed would do the most good in the long run: a high-powered PR and advertising campaign to spread a sobering yet politically palatable message nationwide.

In subsequent meetings in the summer and fall of 1987, the CDC [U.S. Government Centers for Disease Control, headquartered in Atlanta] team developed the idea of filming people with AIDS and building a series of public-service announcements around what they had to say. Subjects wouldn't be identified as gay, and the dangers of intravenous drug use would get little attention.

* * *

Meanwhile, the CDC itself was producing research that made clear that heterosexual fears were exaggerated. And some CDC scientists, including then- epidemiology chief Harold W. Jaffe, publicly railed against the everyone-gets- AIDS message and urged that assistance be targeted to those who most needed it. But his opinion, along with the internal research on which it was based, was typically drowned out by the countervailing mass-media campaign.

Fear of AIDS spread -- and remains. Gallup surveys show that by 1988, 69% of Americans thought AIDS "was likely" to become an epidemic, compared with 51% a year earlier, before the PR campaign got in full swing. By 1991, most thought that married people who had an occasional affair would eventually face substantial risk.

Yet, as CDC officials well knew, many of the images presented by the anti- AIDS campaign created a misleading impression about who was likely to get the disease. The blonde, middle-aged woman in the CDC's brochure was an intravenous drug user who had shared AIDS-tainted needles, although she wasn't identified as such in the brochure. The Baptist minister's son who said, "If I can get AIDS, anyone can," was gay, although the public-service announcement featuring him didn't say so.

* * *

Research continued to show that AIDS among heterosexuals had largely settled into an inner-city nexus, a world bounded by poverty and poor health care and beset by rampant drug use. AIDS was also on the rise in some poor rural communities. Yet government ads typically didn't address the heterosexual group at greatest risk, a group that a CDC researcher would laterdefine as "generally young, minority, indigent women who use 'crack' cocaine, have multiple sex partners, trade sex for 'crack' or other drugs or money, and have [other sexually transmitted diseases] such as syphilis and herpes."

* * *

Having helped shape current attitudes and set AIDS-prevention policies in motion, the Centers for Disease Control finds itself in a serious bind. So far, AIDS has killed 320,000 Americans, according to the CDC. Between 650,000 and 900,000 others are currently infected with the virus that causes the illness.

Overall, rates of new HIV infections appear to be declining from their peak in the mid-1980s. Nonetheless, as many as 40,000 people, mostly gay men, drug users and their sex partners, will contract the virus this year alone. Despite this, the CDC aims its current education campaign, called "Respect Yourself, Protect Yourself," at a broad spectrum of young adults, rather than targeting the high-risk groups.

* * *

Shouldn't the public hear the truth, even if there might be adverse consequences? "When the public starts mistrusting its public health officials, it takes a long time before they believe them again," says George Annas, a medical ethicist at Boston University.

* * *

Even back in the 1980s, Stephen C. Joseph, who was commissioner of public health for New York City from 1986 to 1990, blasted the notion that AIDS was making major inroads into the general population.

Today Dr. Joseph, who is assistant secretary of defense for health affairs at the Pentagon, says: "Political correctness has prevented us from looking at the issue squarely in the eye and dealing with it. It is the responsibility of the public-health department to tell the truth."

B. Many reporters have reacted by agreeing that a deception has occurred with the acquiescence of the media.

The Atlanta Journal and Constitution, May 3, 1996, Friday

HEADLINE: The ultimate AIDS fraud


* * *

As early as 1987, Centers for Disease Control and Prevention officials knew that AIDS was likely to remain a disease of gay men and inner-city drug users. Yet public health officials embarked on a public- relations campaign to mislead the American people into thinking that AIDS was spreading inexorably into the mainstream. Remember those TV ads featuring the minister's son, who said, "If I can get AIDS, anyone can"? Turns out he was gay. Remember the brochures featuring a blond, middle-aged woman with AIDS? She was an intravenous drug user.

* * *

The CDC knows the truth. Yet this year, its education program is once again aimed at the general population. The ultimate casualty of the CDC's lies will be Americans' faith in public health officials, heretofore generally exempt from our growing distrust in government. [End]

The San Diego Union-Tribune, May 4, 1996, Saturday SECTION: OPINION; Ed. B-6;Pg. 7 HEADLINE: Media complicity in AIDS scare?


The Wall Street Journal has just blown the whistle on the biggest, best intentioned and possibly most lethal fraud ever perpetrated by the U.S. government.

The Journal's front-page expose details how the federal Centers for Disease Control embarked in 1987 on a deliberate campaign to exaggerate the danger AIDS posed to the general population in order to boost awareness and funding. The campaign continued despite mounting evidence that the misimpressions it created were wasting money and costing lives.

* * *

The article talks about whether this official deception will further erode trust in government, but bypasses a comparably crucial aspect: the complicity of the media.

And let's not make any excuses about it. We all knew what was going on (or should have). I can remember hearing from other journalists that the danger was being exaggerated very early on. Oddly, there seemed to be less discussion of the deception as time passed.

Now there probably will be a long, earnest debate about whether the ends justified the means. Some will say that this is the first example of political correctness actually killing people. Others will argue that if the danger had not been overstated, there never would have been millions of dollars to spend on AIDS.

It will be contended that fear of AIDS may have reduced promiscuous sex, and noted that the media were wallowing in guilt over charges that they had been slow to recognize the AIDS story in the first place. The tacit cover-up of Franklin Roosevelt's paralysis probably will be cited as an exculpatory precedent.

The emotion-charged nature of the AIDS story undoubtedly discouraged rational analysis. Even today, alluding to the fact that AIDS is not a disease one can pick up in a crowd is often seen as a defamation of gays.

* * *

The Times Union (Albany, NY), May 5, 1996, Sunday, Pg. D1

HEADLINE: The public deserves the truth

BYLINE: Dan Lynch

Some things you'd rather not be right about. Not quite five years ago, I wrote a column that, in part, said this:

"From the beginning of the AIDS era, this has been more than a medical story. It has been very much a story of cultural conflict -- a political story. AIDS galvanized gay political groups because most victims are gay men. It galvanized them also because of their fears that a disease limited primarily to a culturally unpopular group wouldn't be given proper attention by the medical establishment or the government that funds it.

Gay people are very much aware that a significant segment of society views them as degenerates and sinners and wouldn't blink an eye if some plague were to wipe gays off the face of the Earth. That goes double for IV drug users, the other big risk group, who are mostly minorities and poor."

I went on to describe what seemed to be a purposeful political campaign to mislead the public into thinking that everybody was at more or less equal risk of contracting HIV. According to polls at the time, Americans were three times as frightened of AIDS as they were of cancer. Politicians, reacting as they always do to public sentiment, were freeing up tons of money to fight the disease.

The figures on who did and didn't get AIDS were readily available at the time, but they seldom showed up in the press. My point in that column was summed up in this sentence: If you're in the newspaper business, you have to feel guilty that so many people are so ill-informed after a full decade of AIDS reporting.

Did I take grief over writing that? Oy, did I take grief.

Many of my colleagues on this newspaper were infuriated. Linda Glassman, executive director of the AIDS Council of Northeastern New York, wrote a letter to the editor calling me mean-spirited and lacking in compassion. Aaron Broadwell of ACT UP accused me of poor taste.

After I converted that column into a larger piece that ran in the Washington Journalism Review, Cosmopolitan and Reader's Digest, I was swamped with hate mail from around the world.

* * *

The Washington Times, May 7, 1996, Tuesday, EDITORIALS; Pg. A14

HEADLINE: Death by government?

In a front-page story last week, the Wall Street Journal reported that for most heterosexuals, the risk of getting AIDS from a single sex act is smaller than that of getting hit by lightning.

This is not exactly news. As The Washington Times' Joyce Price noted in 1987, "Except for drug addicts and their partners, AIDS simply isn't a significant threat to the heterosexual population. Nearly all AIDS researchers say so, and some public-health professionals decry media exaggeration as making a bad situation worse." Or take the case of Michael Fumento, the title of whose 1990 book, "The Myth of Heterosexual AIDS," speaks for itself.

But you could be forgiven if you happened to miss accounts like these. The general media barrage on the subject of heterosexuals and AIDS was more in keeping with this 1987 assessment from noted science journalist Oprah Winfrey: "Hello everybody. AIDS has both sexes running scared. Research studies now project that one in five - listen to me, hard to believe - one in five heterosexuals could be dead of AIDS in the next three years."

How could so much of the media, AIDS activists and others have gotten the story so wrong? According to the Journal's remarkable story, a substantial part of the blame lies with the federal government for running what now appears to have been an AIDS disinformation program.

* * *

C. But while many in the scientific community and the media admitted that the public has been willfully misled, CDC officials defended their actions and continued to assert the existence of an epidemic threatening the general public:

Atlanta Journal and Constitution, May 2, 1996, Thursday

HEADLINE: CDC AND AIDS; Agency officials deny misleading public, Congress


The Centers for Disease Control and Prevention strongly denied published allegations Wednesday that the agency intentionally downplayed public perceptions of AIDS as primarily a disease of homosexual men in order to garner more funds from Congress.

CDC officials said the Atlanta-based agency has always directed most of its AIDS prevention budget toward programs aimed at educating gay men and intravenous drug users about unsafe practices.

* * *

"The theme (of The Wall Street Journal article) that heterosexual transmission has been overstated and this was done for political acceptance," [former CDC Director James] Curran said, is "off the point."

"Women are the fastest-growing group," he said, "but still a minority of those who get it. New HIV infections indicate as many as 20 percent were through heterosexual contact and that 20 percent are women."

Curran said more funding to prevent infection in women is justified today and that anyone who "talks about someone like Magic Johnson as if he is an irrelevant example" is wrong.

"There are a lot more Americans who have (promiscuous) behavior like that. It's irresponsible to suggest there's no risk to that."

* * *

Richard Marlink, head of the Harvard AIDS Institute, said the CDC has been spending most of its prevention funds on the highest-risk groups but that the scale of the epidemic demands more money. New "subtypes" of the virus are being discovered, he added.

David Rimland, chief of infectious diseases and professor of medicine at Emory University, said HIV in less developed countries "is very much of a heterosexual disease" and that that is becoming increasingly true in the United States as well. "That makes the issue of where do you put your money right now fairly complicated," Rimland said. "Overall, it makes sense to put most of the money at high-risk groups. On the other hand, if you don't educate young people, you're going to see the disease spreading.

In Georgia, the fastest-growing segment is in rural southern Georgia, not in big cities." [End]

D. The conflict within the research community over whether and how to explain to the public that AIDS in the USA is still largely limited to specific risk groups is an old story, known to all who look behind the propaganda to the facts. For example, the Report of the National Research Council, The Social Impact of AIDS in the United States (1993) shocked the AIDS lobbyists with the following disclosure:

"The convergence of evidence shows that the HIV/AIDS epidemic is settling into spatially and socially isolated groups and becoming endemic within them. Many observers have recently commented that, instead of spreading out to the broad American population, as once feared, HIV is concentrating in pools of persons who are also caught in the "synergism of plagues": poverty, poor health and lack of health care, inadequate education, joblessness, hopelessness, and social disintegration converge to ravage personal and social life.... We believe that the patterns shown [in New York City] are repeated throughout the country: many geographical areas and strata of the population are virtually untouched by the epidemic and probably never will be; certain confined areas and populations have been devastated and are likely to continue to be." [Page 7]

[Very visible here is the "politically correct" spin the NRC put on the bare facts. Of course, the groups which are being devasted are not poor people in general but sexually active gays, who are not necessarily poor, and intravenous drug users. Despite this effort to make its findings as palatable to AIDS activists as possible, the NRC Report caused extreme concern in the AIDS lobby, and its unwelcome findings were quickly buried.]

Reaction from the AIDS lobbies is summarized in the following news story:

The New York Times, February 7, 1993, Sunday Section 1; Page 30; Column 1; National Desk

HEADLINE: AIDS Groups Dismayed by Report They See as Discounting Concern


Advocates for people with AIDS say they are worried about misinterpretations of a National Research Council report that says the epidemic is having little impact on most segments of American society because it has struck most fiercely among the "socially disadvantaged."

Jay Blotcher of Act Up, one such advocacy group, said he feared that people would read the report, issued Thursday by a committee of the research organization, and use it as an excuse not to care, to say that AIDS was not going to affect them.

The report said the AIDS epidemic has had little impact on the lives of most Americans or the workings of major institutions like the public health system because it has primarily affected "socially disadvantaged segments" like homosexuals, drug users, the poor and the undereducated. As a result, it said, there is a danger that attention may wane and that "the disease may become accepted as one of the 'synergy of plagues' endemic in vulnerable communities."

Dr. David Rogers, the vice chairman of the National Commission on AIDS, took issue with the panel's conclusion. AIDS "is moving slowly and relentlessly into the population," he said, adding that his group had worked hard to try to make AIDS a concern to everyone.

"Now to have someone say, 'We can relax,' " Dr. Rogers said, "I would much prefer to have them say, 'You should worry about your own son and daughter.' " 'Pay Attention'

Mary Fisher, another member of the national commission and the founder of the Family AIDS Network, also expressed concern about the report. "It says, 'O.K., you out there, you don't have to pay attention,' " she said.

But several people on the 11-member panel, which included ethicists, sociologists, a historian, an AIDS researcher and a law professor, said they believed that some criticism of their report was based on misleading news media reports or a misunderstanding of what the panel was trying to say.

While saying that AIDS was increasingly a disease of the poor, the panel emphasized that as a matter of social justice the nation should not turn its back on its weakest members.

"That message had to go out," said Dr. Albert R. Jonsen, an ethicist at the University of Washington in Seattle who was the panel's chairman.

Dr. Mervyn Silverman, president of the American Foundation for AIDS Research, said the panel was courageous in saying what many people knew to be true. "The report is basically saying that AIDS is a major problem but as it moves farther and farther from the quote mainstream of America it looks like we're going to ignore it," he said. "It's an indictment of our society."

Dr. Silverman added that in a sense the message that everyone was equally at risk for AIDS had backfired. "In the mid-80's, there was hyperbole," he said. "Some used the words explosion" to describe the path of the epidemic. But "a little while later, people would look around and say, 'My friends aren't dying, they aren't sick.' "

Dr. Silverman said: "The attitude has become, 'When I thought I was going to get infected, I was interested in AIDS, but now that I look around and see that my white, middle-class friends are not infected, I'm not interested.' "

Panel's Method

Dr. Jonsen said the panel tried carefully to define AIDS's impact on social institutions like health care, clinical research, drug regulation and prisons. Then, he said, "we had to try to make an informed guess as to whether the effects would be permanant or transitory." To do that, panel members had to ask themselves where they thought the epidemic was going, and "when we did that," Dr. Jonsen said, "we found something that shocked us."

"It goes against the message that the epidemic is universal and uniform," he said. "It surprised us to see the extent to which it was affecting communities that were disadvantaged, with the least social clout, the least power, the least visibility."

Dr. Jonsen said the panel concluded that "that message had to go out, even at the risk of misinterpretation by people who will say,'It's not our problem.' "

Dr. Allan R. Brandt, a panel member and professor of the history of medicine at Harvard Medical School, said, "What our report was about is the way extreme social problems become marginalized. Ten years ago, we were talking about quarantines, about isolating AIDS patients." Now, "socially, AIDS patients have been quarantined, they have been isolated by their social inequity."

Dr. Brandt added: "It's very easy to park the problem and say AIDS is one of many social problems that are intractable. Our committee was enormously concerned that AIDS had disappeared from social consciousness."

"It's not always popular to say that not everyone's at equal risk," Dr. Brandt said. "But if we are to really confront the problem, that's something we have to recognize. The very epidemiological patterns of AIDS is what has kept it off the map."

[The National Research Council is part of the National Academy of Sciences, a private organization chartered by Congress to provide scientific advice to the Federal Government.]

E. The CDC has consistently engaged in similar obfuscation to cover up an embarrassing statistic: there has been no increase in the number of Americans who are HIV-positive during the entire period of the "epidemic."

Below are some news stories about the misleading way the CDC has presented the date about the total number of HIV-positive persons in the USA. While reading them, keep in mind the following points:

1. New York Times AIDS reporter Lawrence Altman is a CDC veteran, virtually a semi-official spokesman for the agency. Note how much "damage control" he practices in his articles, since it is CDC policy to keep the figure as high as possible and maintain the impression that HIV/AIDS is a "pandemic."

2. The CDC knew at least since mid-1994 that the estimate of 1 million U.S. positives was too high, but refrained from making an explicit public announcement of the good news because of the possible effect on funding.

3. The old figure of 1 million was itself continually presented to the public as if infections had just risen to that level. The purpose was to give the impression that AIDS is continually on the increase. The campaign of deception has been successful. Whenever I ask even well-informed persons about the rate of HIV infections, they invariably respond that "of course" the number of HIV-positive people in the USA has been continually increasing since 1989, probably by leaps and bounds.

4. Once a relatively reliable study became available, and reported the total number of HIV-positive persons in the USA to be not 1 million but about 550,000, the CDC worked as hard as possible to get the figure up from 550,000 to around 800,000. The CDC argument that the sample of "households" may have underrepresented heroin addicts, etc., is in itself reasonable. However, it is also likely that many of the HIV positives were false positives -- because the antibody tests generate a high proportion of false positives when applied to low risk groups. It is also true that, for most Americans, the relevant figure is the figure for persons who are not heroin addicts or gay bathhouse frequenters.

5. If the CDC ever does formally announce a new figure, I expect it will claim that a "decrease" in HIV positives is evidence that its prevention and education programs aimed at the general public are working (and therefore should be given increased funding). Do not be fooled by this. There is no reason to believe that the figure was ever higher than it is now. What has changed is the method used to calculate the total.

6. The AIDS agencies still claim that HIV infection is rising rapidly around the world -- wherever the statistics are most open to manipulation. This is essential to maintain the appearance that the world is threated by a "pandemic" caused by a virus newly introduced into susceptible populations. Recent reports attempt to account for the extreme disparity between what HIV is supposedly doing in Africa and Asia and what the same virus is doing in the United States and Europe, by invoking "variant strains" of HIV that supposedly cause very different patterns of infection. The equal/risk viruses are supposed to predominate in Africa and Asia, and to be migrating to the United States -- where they will validate the claims that "everyone is at risk." In light of the history of obfuscation, such claims should be taken with the proverbial grain of salt.

Now to the news stories:

Reuters, Limited, March 10, 1995, Friday

HEADLINE: CDC to lower estimate of HIV-infected Americans

The Centers for Disease Control (CDC) is ready to lower its estimate of the number of Americans infected with the AIDS virus by 20 percent, NBC News reported Friday.

For the past five years, the government has said almost one million people nationwide were infected with HIV, the virus that causes Acquired Immune Deficiency Syndrome.

But NBC said it had learned that the CDC "is preparing to admit that figure is wrong, much too high."

The network said the CDC's old estimate, made in 1989, was a range from 800,000 to 1.2 million, but quoted unidentified government officials as saying the new estimate would be from 600,000 to one million- a reduction of about 20 percent.

The government had delayed publication of the new figures because officials feared the reaction of those in Congress who might want to cut the budget for AIDS research and care, NBC said. "The estimates have been lowered because surveys and studies indicate new infections have leveled off in recent years and becauise officials believe the old estimates were too high to begin with," the NBC report said.

Officials now believe AIDS may have leveled off among gay men, but they caution that the infection rate is still going up for women, for infants and for minorities, it added.

[But the public announcement was never made, and the figure of 1 million -- sometimes even 1.5 million -- continues even today to be quoted by some news reports. Below are the New York Times stories for background.]

The New York Times, March 1, 1994, Tuesday, Section C; Page 3; Column 1; Science Desk; Medical Science Page

HEADLINE: Obstacle-Strewn Road to Rethinking the Numbers on AIDS

BYLINE: LAWRENCE K. ALTMAN, M.D., Special to The New York Times


Determining how many Americans are infected with the virus that causes AIDS is an imprecise science at best. But Federal health officials are trying again, and it appears that the current estimate of one million will be lowered.

The estimate, made in 1989, represents the midpoint of the range reported by the Centers for Disease Control and Prevention in Atlanta. It set the figure at 800,000 to 1.2 million. The widely cited one million midpoint figure has been attacked as too low or too high, depending on the critic's point of view.

The centers plan to make a new estimate in July, and in preparation theagency invited independent experts to meet last week to report and review relevant data. Although some of their estimates went as high as a million, most ranged from 600,000 to 800,000. The new estimate could have critical health, political and economic ramifications. For planning purposes, health officials need to know where and how many new cases of H.I.V., the virus that causes AIDS, are occurring. Determining the national trend in H.I.V. infections and identifying geographical hot spots is crucial to making budgets, developing sound public health policy, evaluating the success of prevention programs and determining research needs and priorities.

There are various reasons why it has been so difficult to obtain accurate information about H.I.V. Laws around the nation preclude testing a person for H.I.V. without permission. Furthermore, many people at high risk refuse to take part in household surveys because of concerns about protecting confidentiality and insurance coverage. Proposals for mandatory testing have met with strong resistance from civil libertarians, advocacy groups and others. Another obstacle to making accurate national estimates is the fact that the United States is battling not one but several AIDS epidemics, and they are not behaving in the same way.

The main epidemic has been and still seems to be among white gay men. But among that group, the incidence of new H.I.V. infections seems to be leveling off, if not declining. Meanwhile, other epidemics, particularly the one involving black women in the South, seem to be rising. The various patterns of the epidemics add to the complexities of determining how many Americans are infected with H.I.V. and how the number has changed over recent years.

Projecting a national total from small, focused studies is fraught with risk. Participants at the meeting pointed to many gaps in the available data as they assessed the strengths and weaknesses of the various statistical methods for making the estimates.

"There's no one way to do it that is right," said Dr. Meade Morgan, an expert with the centers, explaining why his team would check results from several methods against each other before making an estimate.

To health officials, the absolute number of H.I.V. infections is less important than whether the number of new H.I.V. infections is rising or falling. Ideally, statisticians want to know that number each year. But because such data are not collected nationally for H.I.V. and no national study has encompassed all high-risk groups, extrapolations must be made from small studies and surveys.

Calculations from cases of full-fledged AIDS can also be helpful. A major problem in using AIDS cases, however, is that they then reflect the status of the epidemic in the year individuals became ill with AIDS and not when they became infected with the virus, which is generally a silent process that produces no symptoms.

The delay in progression from infection to AIDS in adults is, on average, about 10 years, though the number can vary significantly.

Dr. James Curran, who coordinates all AIDS activities at the Atlanta centers, said a major problem was lack of knowledge about who had become infected with the virus over the last five years. "We don't know whether the incidence of H.I.V. in the United States in 1993 was different than it was in 1991 or 1989, and we do not know yet whether the current figure exceeds or is less than the number of deaths from AIDS," he said.

Dr. Harold W. Jaffe, the centers' top AIDS scientist, said there was ample evidence that the newly infected were different, as a group, from those who were getting infected 10 years ago and that the driving force of the epidemic was changing.

Several studies strongly suggest that the AIDS epidemic may have peaked nationally among gay men. As of last September, the latest month for which data are available, gay men had accounted for 183,344 of the 334,344 cases reported in this country since the disease was first recognized in 1981.

But the transmission of H.I.V. has by no means stopped in gay men. Studies in Chicago and Denver showed that 2.5 percent of gay men in their teen-age years and early 20's were becoming infected each year. Another study showed that despite an overall decline in new infection rates, many young gay men were becoming infected with H.I.V. in San Francisco and Berkeley, Calif.; the highest rates are in black gay men.

The question is whether there is enough transmission among young gay men to create a second wave of AIDS that would rival the one of a decade ago when the figures for H.I.V. infection ranged from 10 to 20 percent a year.

A federally sponsored national survey of childbearing women shows that the number of H.I.V. infections is rising gradually among women in general, but has risen sharply among black women in the South. Participants said the number of infected users of intravenous drugs was probably not increasing.

Statistical data about other diseases are often as imprecise as those for H.I.V. infection. Advocacy groups for a particular disease tend to cite the highest number of affected people to show the magnitude of the ailment's effects on society and to get a larger share of Federal health money. But figures for other diseases seem to get less scrutiny than do those for H.I.V.

Officials at the Federal health centers say their estimate will be based on the best available scientific data. But an estimate lower than a million is bound to be criticized. "So many people have so much invested in the epidemic that anything that makes it look like it is going away, that there may not be as many infected people as some once had thought, causes panic among the investors," one conference participant said in an interview. Funds are often cut for diseases perceived as no longer being public health threats. Sometimes a resurgence follows. Tuberculosis is a striking recent example.

If the new estimate for H.I.V. infection were substantially lower than a million, some fear that the public and the Government would see less need for financing for education and prevention, the very tools that have been credited with stemming the rise in some areas, if not nationally.

"It is very scary what the fallout from low numbers could be," said Dr. Neil Schram, a member of the Federal centers' advisory committee on H.I.V. prevention and a representative of the American Association of Physicians for Human Rights. "My fear is that when people look at the numbers, everybody is going to feel the epidemic is over."

A new problem has arisen to increase the difficulty of revising the estimate. In 1993, the centers began using a revised definition of AIDS, leading to a significant increase in the number of cases. For the first nine months of 1993, 85,526 cases were reported, a rise of 148 percent over the 35,479 cases reported for the same period in 1992. Any statistical method based on AIDS cases used to arrive at a new estimate of H.I.V. infections must take account of the changed definition.

To overcome the problem for future estimates, researchers are trying to develop new ways to estimate the number of newly infected people from spot surveys that could eliminate the need to follow large groups for many years.

Even if the C.D.C. substantially lowers the estimate from one million this July, however, one point about the epidemic seems certain: AIDS is not going away. The disease that was unknown before 1981 will remain endemic in this country. In what numbers remains to be seen.

The New York Times, December 14, 1993, Tuesday

SECTION: Section C; Page 10; Column 5; Science Desk

HEADLINE: U.S. Survey Estimates Infections With H.I.V. Outside Risk Groups

BYLINE: By LAWRENCE K. ALTMAN, Special to The New York Times


The first national survey of H.I.V. infection based on blood tests has generally confirmed previous Government estimates of the number of people infected with the virus that causes AIDS, researchers said today at a scientific meeting here.

The randomized survey, conducted among 7,792 people in households, indicated that excluding many people from high-risk groups, 550,000 people in the United States were infected with the human immunodeficiency virus, said the scientists from the National Center for Health Statistics who conducted the survey.

The chief author, Dr. Geraldine McQuillan, said her team considered the figure an underestimate of the actual national infection rate because the response from young men was poor, and because limits in the design of the survey excluded many people at high risk for infection, including the homeless and those living in hospitals, prisons and other institutions. Many intravenous drug users were also excluded because of difficulty in obtaining a blood sample, she said.

Dr. McQuillan said that because of limitations to the study, estimates of the number of H.I.V.-infected people in the country had a wide range. She said that excluding the high-risk groups, the number of infected people ranged from 299,000 to 1.02 million.

Previous Government Estimates

Since the fall of 1989, the Public Health Service has consistently estimated that one million people in this country are infected by the virus. The estimate was based on a mathematical modeling system, not by directly testing people randomly selected from the general population. The estimate had a range from 800,000 to 1.2 million, and it has repeatedly come under attack as vastly underestimating or overestimating the number.

The earlier estimate was made by the Centers for Disease Control and Prevention in Atlanta. The National Center for Health Statistics in Rockville, Md., which conducted the new survey, is a unit of the disease-control centers.

The 550,000 figure is an estimate of the number of average Americans infected, "a piece of the bigger puzzle, but it is missing the high-risk groups," Dr. McQuillan said. She added, "This is not the gold standard because it does not include those individuals at higher risk for H.I.V." Officials of the centers plan to hold a meeting in February to consider revising the estimate.

The new survey was based on H.I.V. blood tests among 7,992 individuals from 18 to 59 years old randomly selected from 44 communities throughout the nation. Twenty-nine people were found to be infected by the virus for a prevalence of 0.39 percent. Because of the number of individuals who declined to give a blood sample and because of the statistical techniques used, the actual infection rate could have ranged from 0.21 to 0.72 percent. Of the 29, 22 were men and 7 were women. Twenty were men aged 18 to 39 and nine were 40 to 59 years old.

The survey, called the National Health and Nutrition Examination Survey, was conducted from 1988 to 1991 as part of a Federal survey to measure nutrition, blood pressure and the amount of cholesterol in the blood.

"The message is not that the number is 550,000," said Dr. McQuillan, who is a senior infectious-disease epidemiologist for the National Center for Health Statistics.

"We think 550,000 is a low estimate because of the low numbers" in the study and "we believe the correct figure is closer to one million," Dr. McQuillan said in an interview at the meeting of the National Conference on Human Retroviruses and Related Infections.

She added, "It really confirms C.D.C.'s earlier estimate, which we think is probably right on target."

* * *

[As of May, 1996, CDC spokesman have been quoted as estimating the total number of HIV infections in the USA as between 650,000 and 900,000.]

F. Conclusion: The public needs information about HIV and AIDS that is independent of the CDC and the existing HIV/AIDS research community. Government agencies and supporting activists have fostered the false impression that HIV infection is rapidly increasing in American and that it has been spreading from the original risk groups to create a major health crisis for the public in general. An independent assessment of the facts is particularly necessary because, with few exceptions, the print and electronic media have been acquiescent in furthering the false public perception.

As a faculty member of the University of California, I would like to believe that our University can summon the resources and the integrity to provide an independent review of the claimed HIV/AIDS pandemic, including its causes and the actual danger it represents to citizens outside the specific risk groups. Whether this is possible remains to be seen. The same research community and strategy which dominates research at the federal level also dominates research at the universities around the country.

Nonetheless, it will serve some useful purpose to put control language in the budget for University of California research. It will put the research community on notice that representatives of the public are beginning to notice that inaccurate information has been consistently provided, and that publicly funded researchers who continue to mislead the public will eventually be called to account.

Respectfully submitted,

Phillip E. Johnson
Professor of Law
University of California, Berkeley