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Deadly AIDS policy failure by the highest levels of the US government: A personal look back 30 years later for lessons to respond better to future epidemics

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  • Global Solutions for Infectious Diseases

Abstract and Figures

Successful control of any dangerous epidemic requires: (i) early understanding of the epidemiology of the disease and (ii) rapid applications of preventive interventions. Through the lack of both policy and financial support, the United States Centers for Disease Control (CDC) was severely handicapped during the early years of the AIDS epidemic. Senior staff of the Reagan Administration did not understand the essential role of Government in disease prevention. Although CDC clearly documented the dangers of HIV and AIDS early in the epidemic, refusal by the White House to deliver prevention programs then certainly allowed HIV to become more widely seeded. As much of the international health community relies on CDC for up-to-date prevention advice, these actions by the White House surely increased the spread of HIV around the world. To respond better to future epidemics, we need to understand the deadly forces that inhibited CDC at that time.
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Commentary
Deadly AIDS policy failure by the highest levels
of the US government: A personal look back
30 years later for lessons to respond better to
future epidemics
Donald P. Francis
Global Solutions for Infectious Diseases, 830 Dubuque Ave, South San Francisco, CA
94080 USA.
Abstract Successful control of any dangerous epidemic requires: (i) early
understanding of the epidemiology of the disease and (ii) rapid applications of
preventive interventions. Through the lack of both policy and financial support,
the United States Centers for Disease Control (CDC) was severely handicapped
during the early years of the AIDS epidemic. Senior staff of the Reagan
Administration did not understand the essential role of Government in disease
prevention. Although CDC clearly documented the dangers of HIVand AIDS early
in the epidemic, refusal by the White House to deliver prevention programs
then certainly allowed HIV to become more widely seeded. As much of the
international health community relies on CDC for up-to-date prevention advice,
these actions by the White House surely increased the spread of HIV around the
world. To respond better to future epidemics, we need to understand the deadly
forces that inhibited CDC at that time.
Journal of Public Health Policy (2012) 33, 290–300. doi:10.1057/jphp.2012.14
Keywords: HIV; AIDS; epidemic; history; public health; government failure
The First Reports of AIDS Cases and a Dreadful Start to
Prevention
As we pass the 30-year anniversary of what has become known as HIV/
AIDS, some have paused to look back and evaluate what was done and
what was not. In one very clear review, De Cock, Jaffe, and Curran,
take a three decade perspective.
1
In it, they summarize ‘Although the
end of the epidemic is not yet in sight and many challenges remain, the
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www.palgrave-journals.com/jphp/
response has been remarkable and global health has changed for the
better’. No doubt, that is true. But, as I look back, there is one period
when the response was dreadful. Unfortunately, it was the time when
the epidemic was most vulnerable to intervention – the moment it was
first reported. The United States Centers for Disease Control (CDC)
was very capable of responding, as it has done with innumerable
disease outbreaks before and since. But with AIDS, the Reagan
administration prevented it from responding appropriately to what
very early on was known to be an extremely dangerous transmissible
disease. Without clearly understanding the deadly forces that inhibited
CDC at that time, we may well face them again when trying to deal
with future outbreaks.
It all started relatively routinely: a new disease outbreak reported to
the CDC, a call to appoint the initial in-house team of experts, and the
Director’s request for suggestions about what to do next. The call to
join the team came to me in June 1981, when I was the Assistant Director
of CDC’s Hepatitis Division. By that time, I had been with CDC for over
a decade during which time I had worked on many outbreaks in many
parts of the world. A new outbreak was not surprising. But this one
caught our attention. Although only a few cases had been reported from
both coasts, two factors raised our eyebrows. First, the disease appeared
extremely serious with most cases expected to be fatal. Second, all cases
occurred in gay men.
From the onset, CDC staff worked from the assumption that this
serious disease was likely caused by an unknown, transmittable
infectious agent. Although, within the medical community, this was
clearly a minority view at the time, we at CDC, who had spent years
studying sexually transmitted diseases in gay men, spoke from experi-
ence. We also knew what to do with a new serious disease. Again, it was a
bit routine – determine the ‘who, what, where and why’ of a new disease
and, with that information, figure out how to stop it.
As it turns out, the early 1980s was a bad time to have a new epidemic.
Before that, whenever there was a new serious problem, wherever in
the world, CDC was more often than not able to put together the forces
to understand the disease, its transmission, and the targets for control.
With that information, it would then design logical control programs
and follow with evaluation measures of success (or failure). What was
different this time was the new Reagan White House and how their
agenda conflicted with good public health practices.
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President Reagan settled into the White House in January 1981. Six
months later came the first reports of AIDS cases. By the time the
epidemic was in full swing, the Administration appointed Dr James
Mason as Director of CDC. Although a public health physician by
profession, Mason had solid ties with powerful members of the
Administration who sat above him in Washington. It soon became clear
that those in the upper levels of government had little or no under-
standing of what government’s role was in disease control.
Sometimes in government work, such inhibition may have little
impact. But doctors confronting a new epidemic caused by a highly
fatal infectious agent are much like fire fighters confronting a fire.
Early aggressive action pays off, whereas slow passive action leads
to massive destruction. President Reagan and his team were unable
to understand this logic and their obligation to follow it. As a matter
of fact, President Reagan himself didn’t seem to understand the
seriousness of AIDS until his friend Rock Hudson announced he had
it in July 1985 – 4 years into the AIDS epidemic. By that time over
15 000 cases of AIDS had been reported in the United States and half
of these had already died (Table 1). But I am getting ahead of the
story.
Every day in the early 1980s brought reports of new cases from new
areas of the United States and elsewhere around the world. By early
1982, just a few months after the first reported cases in Los Angeles, we
had discovered over 200 cases in the United States. Nearly one half had
already died and the remainder appeared to be on a downhill course.
Even for those of us accustomed to dangerous infections, such a highly
fatal transmissible disease gave us great pause. Soon after the initial
cases in gay men, cases were reported in intravenous drug users, female
sexual contacts of drug users, and recipients of blood and blood
products. By January 1983, the full picture had emerged. AIDS was a
deadly infectious disease transmitted by sexual activity and by the
sharing of blood and blood products. By that time, the United States
was passing the 1000 case mark. A thousand cases of a highly fatal
disease caused by a transmissible infectious agent required immediate
public health action.
With time, the frustration grew for all of us who were accustomed to
doing our best to protect the public for whom we were responsible: this
Administration allowed only partial measures and inadequate funding
even as we understood how potentially dangerous was this outbreak.
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My memos at the time revealed our frustration. Here is one to Dr Walter
Dowdle, Assistant Director of CDC:
Dear Walt:
The outbreak of AIDS is a huge public health problem which
requires a massive infusion of resources. The number of people
already killed is large and all indications are that this disease will
not stop until thousands of Americans have died.
Our government’s response to this disaster has been far too little.
Much of this is because the slope of the epidemic curve has been
Table 1: AIDS cases and deaths, by year and age group, through December 2000, United States
a
Year Adults/adolescents Children o13 years old
Cases diagnosed
during interval
Deaths occurring
during interval
Cases diagnosed
during interval
Deaths occurring
during interval
Before 1981 92 29 8 1
1981 321 122 16 8
1982 1168 452 31 13
1983 3075 1430 77 30
1984 6243 3470 121 52
1985 11783 6872 250 119
1986 19040 11 988 339 167
1987 28586 16 167 506 294
1988 35481 20 883 618 321
1989 42744 27 639 730 372
1990 48697 31 382 814 400
1991 59706 36 635 813 398
1992 78646 41 197 949 426
1993 78948 44 914 923 542
1994 72174 49 548 814 586
1995 69098 50 260 676 538
1996 60216 37 049 500 426
1997 48467 21 188 300 211
1998 40567 17 186 217 116
1999 36575 15 147 150 107
2000 23932 8867 56 44
Total
b
765 559 442 882 8908 5178
a
Persons whose vital status is unknown are included in counts of diagnosed cases, but excluded
from counts of deaths. Reported deaths are not necessarily caused by HIV-related disease.
b
Death totals include 407 adults/adolescents and five children known to have died, but whose
dates of death are unknown.
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gradual, lasting years instead of days. We are not accustomed to
dealing with outbreaks having long latent periods. But these
situations require even greater speed because even after discovery
of the cause, we will be so far behind and control will be even more
difficult.
The inadequate funding to date has seriously restricted our work
and has presumably deepened the invasion of this disease into the
American population. In addition, the time wasted pursuing money
from Washington has cast an air of despair over AIDS workers
throughout the country.
For the good of the people of this country and the world, we
should no longer accept the claims of inadequate funding and we
should no longer be content with the trivial resources offered. Our
past and present efforts have been and are far too small and we can’t
be proud. It is time to do more. It is time to do what is right.
Searching for the AIDS Bug
In May of 1983, I was appointed ‘Coordinator, AIDS Laboratory
Activities’. By that time, over 2500 cases had been reported in the
United States.
I took on my search-for-the-AIDS-bug job with all of the zeal and
enthusiasm that I had had for other CDC assignments. I had all the
confidence that we could put together a great laboratory team at CDC.
After all, CDC had done this before, most recently with Legionnaire’s
disease, where Dr Joe McDade and his team found the cause in fewer
than 6 months. In retrospect, I was remarkably naı
¨ve. Even in situations
where support in Washington is solid, as with Legionnaires, it is not
easy to find a new disease-causing bug – especially if that bug is a new
virus – especially a retrovirus, our prime candidate.
At that time, retroviruses were almost unknown as a cause of human
disease. Indeed, CDC did not even have a laboratory dedicated to
retroviruses. So we had to build one – even without a dedicated budget
from Washington. Unfortunately, our small group, applying the standard
techniques used to isolate animal retroviruses, was unable to identify the
AIDS virus.
Fortunately, our French colleagues had more success. In late 1983,
Drs Jean-Claude Chermann and Franc¸oise Barre’-Sinoussi at the Institut
Francis
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Pasteur in Paris contacted me to report what they were finding. They
needed the important CDC specimens from our AIDS studies to confirm
that the virus they had isolated was, indeed, the cause of AIDS. We
arranged to rapidly dispatch key specimens to Paris.
By the end of 1983, the US had over 4700 reported cases of AIDS with
over 2000 deaths. In February 1984, Dr Chermann came and presented
their most recent data to CDC. With the expansion of their work using
CDC-provided specimens, it was becoming very clear that the virus they
had discovered was, indeed, the cause of AIDS. He also brought a tube of
their virus to us and instructed us about how to grow it. Following this
guidance, we quickly grew the virus and soon developed our own blood
test to detect antibodies. With these tools in place, it did not take long to
fully understand the virus, its spread, and its great potential danger. At
CDC, we had freezers full of extremely valuable blood specimens – some
following gay men for years. These specimens would prove invaluable
for determining the natural history of a virus that had a 10-year
incubation period. Moreover, since the start of the epidemic, Dr Harold
Jaffe and his team, had assembled large collections of blood from AIDS
patients and those at risk of AIDS. Dr Joe McCormick had taken a CDC
team to Zaire to collect blood specimens from suspected AIDS patients in
Africa, and Dr Bruce Evatt and his team had collected specimens from
donors and recipients of blood and blood products. Our labs worked day
and night testing these specimens to fully understand this virus and to
predict the havoc it would cause.
With the French virus and CDC’s skill at applying sensitive blood tests
to important specimen collections, we put many of the pieces of the AIDS
puzzle together in a remarkably short period of time. By April 1984, it
became readily apparent that the French had, indeed, discovered the
cause of AIDS. Two decades later, in 2008, the Nobel committee gave
their prize to the French team for that pioneering work.
The Reagan Administration’s Rejection of an AIDS
Prevention Plan for the Nation
Once we had the cause and the huge amount of initial laboratory work
had been completed, I switched jobs. In the spring of 1985, Walt
Dowdle, the very capable head of the Center for Infectious Diseases at
CDC, asked me to help him put together an AIDS prevention plan for the
nation. Again, being more than a bit naı
¨ve, I accepted the task without
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hesitation. My experience with changing people’s behaviors in the face of
dangerous infectious agents was considerable, as I had worked with
people in various parts of the world who were faced with dangerous
infectious diseases from Smallpox to Ebola. In those situations, people
felt directly threatened by the diseases and responded when we offered
them vaccines or other ‘tools’ to protect themselves. I thought the same
would be true for AIDS. After all, our work on the natural history had
shown that this nasty bug was more fatal than any of the other dangerous
bugs with which I had previously worked. Indeed, our early calculations
with the HIV led us to estimate that over 80 per cent of infected people
would die of their infection. In the end, the estimate was low and, with
time, it looked like essentially everyone infected would succumb. Such
danger instilled great concern especially in those of us who had experience
with other deadly bugs.
Theplanwastogivethepeoplethelatestinformationregardingthe
seriousness of this disease and its means of transmission, so that they
could use the information to support changes in their risk-taking
behaviors. So with the usual CDC zeal, I met with behavior change
experts to come up with a plan and a budget of what it would take
todecreasetheriskofAIDSinbothgayandstraightpeopleatrisk.In
the absence of a vaccine to prevent HIV infection, the approach to
prevention was rather straightforward – teach uninfected people how
to remain uninfected and teach infected people how not to infect
others.
Frankly, it took me some time and considerable brow beating by
behavior-change experts for me to really understand these elements.
AIDS involved a whole new field for me– behavior change medicine. In
my naı
¨vete
´, I thought it would be enough to simply give people the facts:
that HIV has a 100 per cent mortality and that to get infected will ruin
your day – thus, don’t risk infection. I thought, if people heard ‘this bug
would kill you if you do unsafe sex or drugs’, they would, for sure, avoid
infection.
In my previous work, quick messages like ‘Ebola is a horrible disease,
keep your distance’ or ‘smallpox is in your village, get vaccinated’, had
worked very well. But in these situations, much of the behavior-change
work was done for us by the epidemics themselves. These deadly
outbreaks were visible, fast moving, ‘in-your-face’ phenomena. Getting
people to join the prevention effort was quite easy, given immense
motivation with the very obvious mortality from the outbreak. For
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diseases like smallpox, taking a vaccine is a short-term effort requiring
a minimum of behavior change for the target population – just give me
your arm for a few seconds and it’s done.
It was different for AIDS, where a prevention program needed to
change people’s sexual or drug use behavior. And the changed behavior
would have to be maintained forever – not just for a few weeks until the
outbreak dies out. Moreover, with a 10-year incubation period, this
disease did not get people’s attention as the others I had previously
confronted.
Our plan focused initially on the urban areas with the highest rates of
cases. It was straightforward, frank, and not extremely elaborate. It
involved hiring teams of people, educating at risk populations of urban
areas, testing them for antibodies, and counseling them on ways to
prevent further spread. The cost was substantial for those days, $37 million,
but I felt justified considering the dangers that HIV posed to the
population. Senior management of CDC reviewed, finalized, and sent
it to Washington.
This, the nation’s first AIDS prevention plan, worked its way up the
administrative channels to the highest levels of the Department of Health
and Human Services. It didn’t take long for the answer to come back
down. I remember the response so well because it alone predicted the
future of AIDS both for the United States and for much of the world.
The day was 4 February 1985.
I was on the 4th floor of CDC’s main building. We had just completed
one of our many meetings in Dr Dowdle’s corner office, and I was
chatting after the meeting in the common area. Dr John Bennett was the
central coordinator for AIDS at CDC serving as the chairman for our
AIDS Task Force. John pulled me aside to tell me what ‘our leaders’ in
Washington had to say about our plan. John is not an overtly emotional
man. But when he pulled me over, there was no doubt that what he
wanted to talk to me about was serious. In a quiet, but clearly pained
voice, he relayed to me what the highest levels of government said about
my plan to limit further spread of HIV. ‘Don, they rejected the plan. They
said, “Look pretty and do as little as you can.”
Neither one of us had much to say. Looking back, I think we expected
a dismal response from this group of ‘leaders’ who, since the beginning of
AIDS, had repeatedly refused to allow CDC to do what any reasonable
executive should have required it to do. We came to easily recognize the
pattern. The elite of the Reagan administration, and later the Bush
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administration, had no idea of their responsibility to protect the health of
the people who had elected them.
The Director of CDC during those days, Dr James Mason, was also
not willing to fight his bosses to protect the public from AIDS. Mason
was a conservative appointee from Utah. Years later, as he looked back at
the early AIDS years describing his inability to confront the conservative
leadership, he stated ‘there are certain areas which, when the goals of
science collide with moral and ethical judgment, science has to take a
time out’.
2
The issue here centers on how a public health leader
determines what his/her responsibilities are for protecting the health of
all of the public. Mason took the easy way out, choosing not to confront
the primitive forces in the Administration. It seems to me that neither a
practicing physician nor a public health physician has the option to make
such moral judgments about the people for whom they are responsible.
Their job is to save lives, to protect the public’s health. Period.
But a proper response to the ever-so-serious AIDS epidemic was just
not going to happen. Looking back, we could see the disaster coming.
Bythemid-1980s,wewerebecomingfullycognizantoftheperilposed
by HIV. We had data from many locales in the United States showing
that the epidemic, by the time it surfaced with clinical AIDS, was well
seeded across the country, and early recognition that the disease was
not limited to the United States. Dr Joe McCormick’s data from Zaire
showed that the infection was widespread in Central Africa. And other
countries, especially Haiti and France, had reported considerable
numbers of cases.
By mid 1985, over 10 000 cases of AIDS had been reported in the
United States, and many other countries in Europe and Africa were
reporting epidemics. In the terminology of public health, this previously
localized epidemic was rapidly turning into a pandemic involving the
whole world.
Traditionally, both national and international public health experts
looked to the CDC for guidance on the control of new pandemics. But
for AIDS, guidance was not to come. The ‘look pretty and do as little as
possible’ guidance that CDC got from Washington, was rooted in the
simplistic view of President Reagan and his colleagues in the White
House. The Reagan crew was determined to cut government spending.
Their simple-minded approach had no room for complex concerns
like AIDS. If no AIDS resources (money) were going to come from
Washington, then there was no room for discussion of good public
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health policy, structure and how to apply it. Ignoring AIDS was not a
passive endeavor. It was an active policy of the Reagan Administration.
Publicly, the Reagan Administration called AIDS ‘the federal govern-
ment’s number one health priority’. But within their own halls ‘the
Reagan Administration maintained that federal health agencies should
be able to meet the growing AIDS threat without extra funds, simply
by shifting money from other projects’. The past president of the
American Public Health Association put it this way ‘[The Reagan
Administration people] tend to see health in the same way that John
Calvin saw wealth: it’s your own responsibility, and you should damn
well take care of yourself. While the Reagan administration dozes and
scientists vie for glory, the deadly AIDS epidemic has put the entire
nation at risk’.
3
The Surgeon General at that time, Dr C. Everett Koop should have
been the one to lead the charge so that CDC could deliver an appropriate
prevention program. However, he was forbidden to say anything about
the disease for five and half years of Reagan’s term. Koop finally broke
ranks with the Administration and issued a Surgeon General’s report in
October 1986. For that, Koop was attacked within the Administration
by a list of notables: Education Secretary William Bennett, his aid, Gary
Bauer (who later became White House domestic policy adviser), and
Patrick Buchanan, White House director of communications.
4
Buchanan had shown his colors well before joining the staff when he
wrote about AIDS ‘The poor homosexuals. They have declared war on
nature and now nature is exacting an awful retribution’.
5
So much of our early response to AIDS was mishandled and misdirected
in the United States. As much of the world turns to the CDC for leadership
in cases of new epidemics, the resulting vacuum had much wider
ramifications. But with AIDS, it was not just an absence of leadership. It
was often active obstruction of logical responses. These people caused
immense preventable suffering and death – and it is likely that no one in
the Reagan Administration will ever be held accountable.
About the Author
Donald P. Francis, MD, DSc, is Executive Director of Global Solutions
for Infectious Diseases, an NGO he established to develop vaccines for
the less developed parts of the world.
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References
1. De Cock, K.M., Jaffe, H.W. and Curran, J.W. (2011) Reflections on 30 years of AIDS. Emerging
Infections Diseases 17(6): 1044–1048.
2. Andriote, J.M. (2011) Victory deferred: How AIDS changed gay life in America, 2nd edn.
Chicago: University of Chicago Press, p. 137.
3. Talbot, D. and Bush, L. (1985) At risk. Mother Jones, pp. 29–37.
4. Koop, C.E. (1991) The Memoirs of America’s Family Doctor. New York: Random House.
5. Morris, E. (1999) Dutch – A Memoir of President Reagan. New York: Random House, p. 816.
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  • CE Koop
Koop, C.E. (1991) The Memoirs of America's Family Doctor. New York: Random House.
Dutch -A Memoir of President Reagan
  • E Morris
Morris, E. (1999) Dutch -A Memoir of President Reagan. New York: Random House, p. 816. Francis 300 r 2012 Macmillan Publishers Ltd. 0197-5897 Journal of Public Health Policy Vol. 33, 3, 290-300
Victory deferred: How AIDS changed gay life in America
  • J M Andriote
Andriote, J.M. (2011) Victory deferred: How AIDS changed gay life in America, 2nd edn. Chicago: University of Chicago Press, p. 137.