FINLAY ALBARRAN
MEDICAL INSTITUTE

Can Public Health and Human Rights be at Odds?

The lessons of the AIDS epidemic in Cuba

Shawn K Centers BS. + Antonio M. de Gordon MD. PhD++
Carlos M. Moas MD, Gladys Cardenas DO.
Elpidio Valdes MD. Reinaldo Paya MD.

Finlay AIDS Working Group*
Miami, Florida USA

RUNNING HEAD: Public Health and Human Rights
November 8, 1993

Mailing address:
AM Gordon, MD
344 West 65 Street # 201
Hialeah, Florida 33012-6719
Author to whom reprint requests should be sent:
same as "Mailing address."
 

+) Osteopathic Clinical Fellow
Southeastern University of the Health Sciences
North Miami Beach. FL 33162 USA
++) Clinical Associate Professor of Medicine
Southeastern University of the   Health   Sciences
North Miami Beach.  FL 33162   USA

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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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

na = not available
 * Up to May, 1993.

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Table 2. Features of the Cuban Immigrants studied to provide an independent
health window of Cuban health
(15, 16, 17,18,19,20) .

 

CUBANS

Immigrants

 Island

Age (yrs): <15 21% 36%
15-65 72% 60%
>65 7% 4%
Sex: Male 55% 48%
Female 45% 52%
Monthly Income 72-430 90-700
(Cuba peso, range)
Residence Urban

81%

70%

Rural

19%

30%

Nutrition First Degree
Malnutrition
in Children

24%

25%

Obesity Women

17%

23%

Diseases: Diabetes Mellitus

2.3%

2.8%

Hypertension

7.0%

10%

Hepatitis BsAg

0.4%

0.7%

HIV positivity

0.4%

0.0%

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Table 3. Features of the Soviet clock Screening HIV
tests (26)

 

Name of Test

Country

Sensitivity

Specificity

micro- Elisa

Cuba

84.6

96.9

Peptoski

Russia

95.2

98.9

Antigen

Russia

99.0

97.5

Epiton

Russia

98.6

94.3

Recomb/VICH

Russia

97.7

99.7

Seksichek
Serumverk

GDR

98.8

99.2

 


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