Introduction
The Number of HIV Seropositives
HIV Screening Methods
Treatment of HIV seropositive and AIDS patients
The Inherent dangers in this Public Health Precedent
Education and Prevention
The Issue of Human Rights
Conclusion and Summary
Table 1.
Annual HIV Seropositivity, AIDS incidence and AIDS Mortality
reported by MINSAP
Table 2. Features of the Cuban Immigrants studied to
provide an independent
health window of Cuban health
Table
3.
Features of the Soviet clock Screening HIV
References
Introduction
The global statistics and projections for
Human Immunodeficiency Virus (HIV) infection are striking
and undeniable
(1).
The HIV and Acquired Immunodeficiency Syndrome (AIDS)
epidemics have been challanging particularly in North
America, the Caribbean, Africa and Europe. No country in the
affected regions has declared its population free of the
dangers of HIV and shown conclusively the control of AIDS.
Except for Cuba, the largest island nation of the Caribbean,
where health officials "have solved" the difficult human
problem of HIV infection
(2,
3, 4, 5,
6, 7).
The reported evidence includes: a low number of AIDS cases,
and rates for HIV infection and AIDS which are dramatically
less than in any of its neighbors. Furthermore, AIDS has
been virtually eliminated from the pediatric population of
Cuba. These claims deserve attention in view of the global
picture of HIV infection.
Cuban government sources agree that they have
regarded the rights of human society in favor of individual
human rights
(2,
3, 4, 5,)
But in 1991, Dr. Omar del Pozo Marrero became
known in the island for suggesting that the rights of
society cannot take precedent to the rights of the
individuals because society is made up of the sum total of
all individuals in society
(8).
Del Pozo Marrero, a young Cuban physician, became a prisoner
of conscience for voicing his concerns about human rights
and HIV infection
(8).
Others would soon follow. In 1992, the
Cuban government commissioned two film makers of the Cuban
Institute of Art and Cinematography (ICAIC) to make a
documentary of AIDS in Cuba with access to sanatoria, health
officials and patients
(9).
Then, after its completion, the film and the film makers were
rejected by the Cuban authorities. Why? There were found to
he "counterrevolutionary
(10)."
Cuba is not the only arena where an HIV public health agenda
has clashed with human rights. Not long ago, the conflict
between individual human rights, community safety and
rights, and medical care came under scrutiny elsewhere
(11).
In November, 1991, and after a military coup in Haiti,
thousands of Haitians who had been taken and detained into
the US Naval Base at Guantanamo Bay were HIV tested,
segregated and treated in a way which has been compared to
the Cuban management of HIV patients in Cuba.
Understanding HIV infection and AIDS in Cuba
is difficult. Moreover, it requires a full examination of
the issues and evidence beyond what has been made available
solely through the Cuban government, the Cuban Ministry of
Public Health (MINSAP), and investigators invited to visit
and/or write about this subject by the former. We propose to
consider here several important aspects of this problem.
First, the actual number of HIV seropositives should be
sought and confirmed. Second, one must examine the
diagnostic methods used and their accuracy for determining
HIV seropositivity.
Third, we must inquire about the condition
and treatment of the HIV seropositives and AIDS patients.
Lastly, we must look for inherent dangers in this public
health precedent which may affect not only the Cubans out
also other populations exposed to similar methods of control
for HIV infection.
Top
The Number of HIV Seropositives
According to official sources, as of May,
1993 927 cases of HIV seropositivity have been detected in
Cuba
(3).
A low number indeed, if we are to accept these figures.
Since the mideighties, however, there has been an
ongoing debate in the international medical literature
concerning the actual number of HIV seropositives in Cuba
(6, 12,
13).
The debate perhaps began when Cuba after denying it had any
HIV infection, reported suddenly one death due to AIDS in
1986
(14).
Obviously, that particular case of AIDS must have been
infected with HIV for a number of years and, given the
epidemic nature of this illness, others were
probably infected but not recognized as such. Moreover, by
1989 the Cuban government was reporting 259 seropositives
(4, 5,
6).
The official number of HIV seropositives are summarized in
Table 1. In terms of groups at risk, the Cuban government
was very vague initially
(14).
First it was only recognized that the infection had
initially been acquired by Cubans through sexual relations
with foreigners
(5,
6, 14)).
It was not until very recently that it was acknowledged that
Cubans 5 involved in internationalist duty as
soldiers
professionals, and diplomats
made up the group at highest
risk
(3).
How can these data be evaluated? If one looks
at other
available
sources of data, there is unequivocal evidence of HIV
infection in the Cuban population as far back as 1980
(15).
In a study involving 990 randomly selected Cuban immigrants
into South Florida from a universe of 25,000 which was found
to have rates for hepatitis B, syphilis, diabetes,
hypertension and other health parameters comparable to
those of the Cuban population in the island, four Cubans
were positive for HIV
(15,16,17,18,19).
The data from the immigrant studies provide a window through
which Cuban health can be evaluated (Table 2). The rate of
HIV seropositivity projected for Cuba from the immigrant
studies suggest a rate of seropositivity 45 times greater
than what was reported by the MINSAP eight years later
(20).
A rate of 0.4% seropositivity in 1980 is a very high rate
for the Caribbean suggesting that HIV infection arrived in
Cuba earlier than in other countries of the region. Attempts
to explain the immigrant data in terms of a selection bias
involving an unduly high rate of HIV seropositivity among
certain socioeconomic groups which arrived in the US via the
Mariel exodus is not supported by the low rate of Hepatitis
B serology in the specific immigrant universe studied.
The immigrant HIV serology seems more
realistic than the
MINSAP data
if one considers that Cuba's migrations into areas of Africa
heavily infected with HIV such as Cabinda with a 11 % rate
of HIV seropositivity
(21)
among pregnant women in the 1980's involved 500,000 Cuban
Internationalists over a span of more than 25 years
(22).
Furthermore, during the same time interval there was a
tenfold increase in the incidence of syphillis in
Cuba, an epidemic which is known to correlate with the
growth of the HIV epidemic
(23, 24).
Therefore, one is hard pressed to suggest that Cuba seized
the epidemiological moment at the very start of the
epidemic, le. 1987, when HIV was probably widely prevalent
in Cuba at least as early as 1980. This was long before any
test was devised for HIV serodiagnosis, or before any
infection was detected, or any quarantine or confinement
took place
(5).
Moreover, collaborating testimony from Cuban physicians
indicates that cases with immunodeficiency of unknown
etiology consistant with what later was termed AIDS
were being seen in Cuban community hospitals as early as the
1970's
(12).
In short, there is more than sufficient evidence to
question the low rates of infection reported officially from
Cuba where official HIV epidemiological data is at best
unreliable and at worst substantially inaccurate.
Top
HIV Screening Methods
A second area that needs to be addressed is
the accuracy of the Cuban micro-ELISA test for HIV serology.
This test is used in Cuba for mass screening
of the population
(3,
4, 5, 6,
7)).
Since any epidemiological study is only as good as the
instrument used for diagnosis, it would seem that the
accuracy of the test in question would be an important issue
(25).
Moreover, since in Cuba these tests are the
sole criterion considered to lable someone HIV seropositive
and seggregate them into quarantine
(4,
5),
it would seem that the accuracy and validity of the
particular test used would be of the highest concern and
priority.
Unfortunately, in Cuba this does not seem to
be the case. Most sources agree that since 1987 Cuba has
been using a whole virus derived immunoassay test, the
micro-ELISA
(3,
4, 5, 6,).
The MINSAP, however, has not reported on the accuracy of the
micro-ELISA HIV test
(5,
6, 7).
Interestingly, in 1989 Bayer and Healton estimated that
between 21 to 53 persons may have been inaccurately
considered HIV seropositive
(4,).
In 1988, a Soviet study was conducted to compare
four types of Soviet HIV immunoassay tests, one
inmunofluorescent antibody test kit from the former German
Democratic Republic and the Cuban micro-ELISA test
(26).
The results of this Soviet study have never been made widely
known. The researchers used sera from 175 HIV infected
patients and 135 non infected controls. The data on the
accuracy of these tests is summarized in Table 3. Of the six
tests studied, the Cuban micro-ELISA was found to have the
lowest sensitivity and specificity
(25).
As a result of these data, the Soviet researchers concluded
that the micro-ELISA was not an effective screening
test for use in the Soviet block countries
(26). Yet,
Cuba's MINSAP persisted in using it 12 million times
(3),.
Given the data in Table 3, and assuming that
the 927 HIV seropositives are true positives in a universe
of 12 million persons tested, we can estimate the number of
false negatives and false positives expected
(25).
From the sensitivity, a measure of the ability of the test
to correctly identify those persons with the disease (HIV
infection)
(25),
it can be concluded that there could be 176 false negatives.
These Cubans have HIV infection and have been left out of
the quarantine in the community. This is hardly a measure of
total control since these infected persons are not even
subjected to the arbitrary evaluation for "trustworthiness."
On the other hand, the specificity of the
test is measure of its ability to identify correctly those
persons who are free from disease (HIV infection)
(25)
.
Therefore, there could have been 383,901 persons without HIV
infection who were false positives In the micro-ELISA.
Confirmatory tests for HIV are used in Cuba, is the Western
blot
(5, 27).
But since any confirmatory test used also had to have a
sensitivity and specificity of its own
(24),
assuming a favorable test (99% or even 99.9%)
(25)
26),
there may be at least 517 and perhaps as many as 3,877
persons who have been labeled incorrectly as positive. The
greater number of the false 9 positives than the
number of reported seropositives suggests
another
inconsistance in the Cuba data. Unfortunately, under the
MINSAP agenda, these false positives were isolated along
with the true positives in sanatoria where promiscuity and
other contagious diseases may be common
(9).
Obviously by now, those unfortunate Cubans may have not only
lost their languishing freedoms but also acquired HIV or
tuberculosis. It is clear that since the entire Cuban AIDS
control is based on the accuracy and reliability of these
screening and confirmatory tests applied to the entire
population, one can only conclude that the program is
significantly flawed.
Top
Treatment of HIV seropositive and AIDS
patients
Third, the issue of treatment of HIV
seropositives cannot be over looked. The MINSAP and others
have implied that the mandatory isolation and quarantine
aspects of the Cuban National AIDS Campaign were appropriate
epidemiological approaches to control the spread of HIV
infection
(3, 5,
6).
But as it was discussed above, the quarantine was enacted
too late to be of any consequence in HIV control.
Furthermore, rarely has isolation and lifetime quarantine
been used to control a sexually transmitted disease. The
Cuban policies effectively Imprison people who did not
commit a crime, seggregates groups of patients into one of
14 sanatoria, isolates patients from their families, and
ignores their basic human rights
(3).
Under the sanatorial treatment married couples may stay
together but their 10 children are not allowed to be
with their parents, and
relatives
are often told that they cannot visit their AIDS patients
even when the patients are close to death or very ill
(3.,9).
Furthermore, harsh* penalties may be inflicted upon those
who do not conform with the official policies
(9).
These involve arbitrary trials without lawyers where the
patients are charged with "propagation of the epidemic" for
attempting to escape to be with their family
(9).
Another aspect of the management of HIV
infection in Cuba is the policy for those patients who
escape or attempt to escape from one of the 14 sanatoria
established to deal with the epidemic. Each of these
installations is staffed by Cuban State Security personnel
through its "Cuerpo de Vigilancia v Proteccion" (CVP)
guards
(9).
Over the last several years numerous sources have reported
abuses against HIV patients by the CVP guards. Reports of
nylon bags being pulled over a patient's head, beatings,
shooting of those who attempted to escape, and denial of
food and medications have been reported by Cuban human
rights activists but denied by the Cuban government
(4,
28)
The documentary prepared in Cuba for the ICAIC clearly
points to the fact that the barbarisms allegedly perpetrated
on HIV patients indeed occured.
Another issue of concern in the Cuban HIV
epidemic is the very low rate of pediatrics HIV infection
and AIDS
(3).
Since AIDS is mostly a heterosexual disease in Cuba
(5, 6),
it does not follow that one child has died of
AIDS and only four are HIV seropositive. The real
elimination of HIV infection in children seems particularly
significant until one examines fully the management of this
issue by the Cuban AIDS policy and practice. Under the Cuban
policy of HIV control all pregnant women are tested for HIV
infection and those who are found to be positive are
automatically submitted to a "therapeutic abortion
(5)."
The choice of the woman, the sensitivity or specificity of
the screening and confirmatory tests in question, the
likelihood of the child being born with HIV disease or not
are not apparently important to the Cuban regime or
discussed by those who have found this particular statistic
a laudable one.
Top
The Inherent dangers in this Public Health
Precedent
It is important to address the inherent
dangers of these public health policies since definite
threats to human rights are evident
(11).
This is not only true for the Cubans but also for those
populations in whom these practices may be enforced in the
future. For the seropositives it is not difficult to
understand that the nightmare of the Cuban AIDS policies
which begin with an involuntarily administered, imperfect
test may lead to a lifetime of isolation and loss of freedom
and a multitude of human rights. This leads to a feeling of
loss of individual human dignity and respect and the
perception of imprisonment by a considerable number of HIV
infected persons
(8,9).
Many of the HIV patients plainly feel
incarcerated and
mistreated.
As one sanatoria! resident said: " what hursts the most is
the isolation
(9))."
The psychological consequences of sanatorial
confinement are more often than not manifested by depression
(9).
Not only are many patients depressed because of the
isolation and "imprisonment" but also because of the
arbitrary regulations and trials to which they are
subjected. After six months of confinement, patients are
evaluated and deemed "trustworthy" or "not trustworthy
(3,9)."
The selection process for "trustworthiness" status leading
to the possibility for passes with or without a chaperone
out of the sanatorium or even community outpatient treatment
appear arbitrary to many patients
(9).
It has been claimed, however, that only internationlists
obtain easily the "trustworthy" status with its inherent
proviledges such as passes to leave the sanatorium or
community outpatient treatment
(3,9).
Relatives of some patients have complained vehemently that
such discrimination is not good for the health of the
patients
(9).
One aspect of the Cuban AIDS campaign which
has not received enough attention is its cost. Since its
inception, the campaign is estimated to have cost on the
order of 50 million dollars
(29).
Obviously this is a significant amount for a country with a
falling economy, adrift in the post communist world, and
enduring the American embargo 13 reinforced by the
Cuban Democracy Act
(30).
As early as 1991
the Cuban
government was suggesting that the cost of zidovudine in the
sanatoria was as high as 5% of its foreign currency reserves
(31).
Since the campaign has not been as effective as it has been
claimed, its real costs in terms of the separation of
families and friends, the misdiagnoses of healthy persons
condemed into isolation, the false sense of security given
to the general population, and the innumerable involuntary
abortions performed are more appreciable than what the
financial figures alone suggest.
Top
Education and Prevention
The role of HIV and AIDS education should be
of paramount importance given the above data. However, a
troubling issue for the Cuban population as a whole is the
lack of public education about the HIV epidemic and AIDS
(8).
The emergency for educating health professionals and the
general public is clear from the low sensitivity of the
screening HIV test used, the absence of HIV screening on the
500,000 tourists which visit the island yearly, and the fact
that even the Cuban government agrees that prostitution has
increased
(30)
. Obviously these features of the Cuban HIV reality place
the general public at appreciable risks for HIV infection
unless individual precautions are taken. The complacency of
the authorities is indignant. In the area of prostitution,
"Fidel comrades of the night" are considered a source of
hard currency and the authorities have apparently turned a
blind eye to their activities
(31).
Nevertheless, the world
has been led
to believe that HIV infection is not a serious problem for
Cuba or Cubans
(3,
4, 5, 6,).
It is assumed that all AIDS patients and
"untrustworthy" HIV infected persons are in isolation.
Therefore, according to the official logic: how can Cubans
be at risk of HIV infection?
This is obviously a falacy. The Cuban model
of HIV control has placed the population at greater risk of
contracting the disease by proposing -incorrectly- that the
HIV infection is isolated. Cubans effectively feel that
they are not susceptible to HIV.
As one sanatoria resident said: "the
public has
gotten a false sense of security thinking that all AIDS
patients are in the sanatoria...Meanwhile, they are not
practicing safe sex
(9)."
To alert the Cuban population of their susceptibility to HIV
infection, our group has suggested the following slogan:
"La bolita esta en el bombo" (the number is in the
tumbler). Meaning, if you play the odds by engaging in risky
behavior you may catch the HIV! Finally the lack of
education about AIDS among the Cuban population has led also
to the stigmatization of HIV seropositives as demonstrated
by the "Tropicana Nightclub" dancer
(9)
who was thrown cut of his job and his clothes and Belongings
burned in front of his peers when he was found to be HIV
seropositive.
Top
The Issue of Human Rights
It should be understood that the Cuban AIDS
campaign does not have the support of all Cubans, or Cuban
health professionals
(8, 12,13).
Nor does it embody the ideals of all Cubans in and outside
of Cuba. Dr. Omar del Pozo Marrero made this very clear in
his open letter to the Minister of the MINSAP
(8).
In the letter, he argues in favor of HIV patients and their
rights. He also argues for a more accurate accounting of
the numbers of HIV seropositives. We feel that the letter of
Dr. del Pozo Marrero should have been seconded by others who
have had an interest in HIV infection such as it happened
with the cause of the HIV-infected Haitians detained in a
US government camp
(32).
Del Pozo Marrero is not the only voice which has been
silenced. In 1992 a documentary on AIDS in Cuba entitled "Al
Margen del Margen" (Beyond Outcasts) was made by Ivan Arocha
and David Hernandez under the auspices of the Cuban
government
(9,10).
The Cuban film makers were given complete access to the AIDS
Sanatorium at "Los Cocos" including to some areas not
visited by Invited guests. The latter are shown air
conditioned units in the "Maranon Pavillion," the privileged
facility within "Los Cocos
(9)."
The film gives striking first person accounts of the
problems and perils of the Cuban HIV sanatorial program,
their residents and their families. In early 1993 the film
came up for review by the ICAIC. It was declared
counterrevolutionary
(10).
The film makers sought political asylum
(10)
in the US after leaving their country under duress.
Del Pozo considered AIDS in Cuba as a problem
of considerable proportions that had already infected more
people than those who could be islated in sanatoria
(8)..
He believes it unjust to isolate AIDS or HIV seropositive
patients against their will. The sadness, suffering, and
psychological disturbances brought on by the sudden
isolation, imprisonment and division of families is clearly
evident in the documentary "Beyond Outcasts" as it was
denounced by Dr. del Pozo Marrero.
Shortly after writing his open letter on
AIDS, Dr. del Pozo Marrero was imprisoned in a Cuban jail
and later on charged with "collaborating with a foreign
enemy of the revolution." He was sentenced to 15 years in
prison. He is considered a prisoner of conscience by Amnesty
International. An effective campaign to free Dr. del Pozo
Marrero and all the HIV victims in Cuba is still needed.
Top
Conclusion and Summary
The conflict between public health and human
rights is evident in Cuba as it has been elsewhere. It was
perhaps best summarized by one Cuban sanatorial resident who
stated: What I am? Am I a human being with a mind who has
been admitted to this place which they have decided to call
a hospital because I have a disease with a diagnosis and a
treatment? A disease which depresses us, ematiates us, and
will deteriorate us completely making my life span shorter
than it would have been otherwise. Or am I a prisoner who is
17 only a number and is surrounded by CVP guards, who is
imprisoned
without having commited any crime? How long is my sentence?
(9)"
How we answer these questions from a Cuban HIV infected
woman will determifte our response to any public health
policy in general or the specific policies applied in Cuba
to deal with HIV infection.
As the Cuban dilemma is not entirely unique,
it is hoped that there may be a basis for hope. The former
Haitian detainees at the U.S. Naval Base at Guantanamo, like
the Cubans today, were at the mercy of a poorly thought out
public health policy enacted without the consent of those it
proposed to protect
(11).
The difference between one scenario and the other, however,
is that the temporary Haitian dilemma was the result of an
emergency situation. As it is well known, the policy oh HIV
infected Haitians was radically changed thusly opening to
those patients the standard of care prevalent in the U.S. It
is time to call for a radical change of the Cuban AIDS and
HIV policy and for the liberation of all the victims in
Cuba. In the case of the Haitian detainees, the change
occured through the effective use of open dialog through the
concerted efforts of US Naval medical officers who
acknowledged that the facilities in Guantanamo were
not adequate for the detainees, groups of physicians like
Doctors of the World, the press, and the U.S. Judicial
system
(11,32).
Cubans have no constitution guaranteeing individual
rights or an independent judicial system
(11).
Given, however, that Cuban physicians have already
condemned the current policies
(8, 12,13)
prevailing in Cuba, an appeal is hereby made to the
international community to support the views expressed by
Dr del Pozo Marrero and condemn the systematic violation of
human rights in these patients and their advocates.
Regardless of political ideology or the
MINSAP priorities, the care of the HIV patients in any
country should begin and end with the recognition of the
whole person who happens to be ill. As physicians, we must
have an unwavering commitment to recognize that human public
health must above all include a genuine respect for human
rights, the dignity of the individual, and the truth. It is
our responsibility to assure that public health does not
deviate its attention from the rights and dignity of the
whole person embodied in every man, woman and child in need
of either protection or assistance.
Despite claims to the contrary, the story of
AIDS in Cuba is
more a nightmare than a dream. It
is the story of systematic
mandatory HIV testing of the entire population in sexually
active age groups, imprisonment
for those who are found to
be seropositive for at least six months, the possibility of
lifetime isolation in a sanatorium
if the HIV seropositive is
not found to be "trustworthy" by criteria set up by Cuban
State Security, and forced
abortions for all HIV
seropositive pregnant women. It is, in short, a
totalitarian
solution to a human health problem with
repercussions for both the individual and society. The
victims of HIV infection in Cuba are indeed stripped of
their individual human rights in the name of the "common
good." The free and democratic "input of the people into the
definition of the "common good" is not apparent. More often
than not, the Cuban government policies are achieved through
not very well defined regulations under which the MINSAP can
take away basic human rights from patients with the
assistance of the military
(9).
It is the story of children torn from their
parents, and arbitrary arrests of patients judged without
lawyers. It is the result of what the pastoral letter of the
Cuban Catholic Bishops of September 8, 1993 called: "the
all-encompassing ("excluyente") omnipresence of
ideology of the State." Unfortunately, it is a policy which
also keeps away the caring hearts and hands of independent
physicians, investigators and health professionals.
Finally, the time has come for the Cuban
government and all governments alike to understand that
unless the human rights of individuals are respected the
rights and safety of the human community, society, are not
safeguarded. Indeed, they are in danger under repressive
regimes which have two qualities in common: the absence of
fundamental freedoms and democracy. Therefore, public health
policy must take into account the rights, ideas and opinions
of all peoples it purports to protect.
Top
Table 1.
Annual HIV Seropositivity, AIDS incidence and AIDS Mortality
reported by MINSAP sources (3,
4, 5, 6).
|
Year |
HW +
(no of cases) |
AIDS
(no of cases) |
AIDS mortality
(no of cases) |
|
1986 |
99 |
2 |
2 |
|
1987 |
75 |
4 |
4 |
|
1988 |
88 |
47 |
6 |
|
1989 |
89 |
13 |
5 |
|
1990 |
199 |
7 |
27 |
|
1991 |
81 |
11 |
na |
|
1992 |
181 |
34 |
na |
|
1993* |
115 |
69 |
na |
|
Total |
927 |
187 |
111 |