State
of California Assembly Education Subcommittee
Hearing on University of California AIDS research budget
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
BYLINE:
MAGGIE GALLAGHER
* * *
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?
BYLINE:
David R. Boldt THE PHILADELPHIA INQUIRER
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
BYLINE:
Bill Hendrick; STAFF WRITER
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
BYLINE:
By GINA KOLATA
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
DATELINE:
ATLANTA, Feb. 28
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
DATELINE:
WASHINGTON, Dec. 13
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
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