AIDS in Cuba: From Vigilant Quarantine to Vaccine Quest
Byron L. Barksdale, M.D. Updated December, 2009
“and when I shall die, take him and cut him out in little stars, And he will make the face of Heaven so fine that all the World will be in love with night, And pay no worship to the garish sun”
Cuba AIDS Project
Subject: Assessment of HIV/AIDS Activities in Cuba with emphasis on durability
Purpose of travel: To continue to assess the HIV/AIDS activities currentlsy being conducted in Cuba, identify gaps in service, and propose the role(s) that the USA can play in increasing the capacity and delivery of key strategies in the national plan of Cuba.
Summary: Members of the Cuba AIDS Project met key government and non-government partners working in and around the AIDS epidemic in Cuba as an annual followup on site visits from prior years. We found a great need for funding and implementaion of needed services at virtually all levels. Cuba is doing an excellent job in HIV/AIDS epidemiology, prevention, education and care considering its limited resources. To have a durable program over many years, we continue to propose three main axes around which to focus USA based humanitarian efforts through Cuba AIDS Project: (1) assist Cuba with its HIV surveillance and epidemiology (2) a comprehensive Maternal to Child Transmission (MTCT) prevention program, (3) and delivery of needed informational items, medications, nutritional supplements, including vitamins, as well as food and healthcare supplies to HIV patients and their families.
History of HIV in Cuba
The native population of Cuba witnessed decimating epidemics introduced from Europe after Columbus arrived. Yellow Fever, due to a Flavivirus, caused epidemics devastating troops in the Spanish American War. Dengue fever epidemics also occur in Cuba. The National Commission on AIDS was established in Cuba in 1983 before Cuba had identified any Cuban nationals with HIV or AIDS. In 1981, the first case of HIV/AIDS was diagnosed in the USA. Cuba first diagnosed HIV/AIDS in a soldier returning from Mozambique in 1985...four years after HIV/AIDS was first diagnosed in the USA. Large scale testing of the Cuban population commenced in 1985. In 1986, Cuba, as many other nations in the World, was concerned about the possibility of HIV being a highly contagious virus (Ebola or Marburg virus) derived from Africa. Jorge Perez, M.D., an infectious disease expert who trained at McGill University in Montreal was very suspicious, despite international agency assurances, that blood products transmission of HIV was possible. Dr. Perez ordered the destruction of all foreign derived blood products in Cuba in 1986. This destruction of foreign origin blood products caused even more strain on the Cuban healthcare system because blood products had to be rapidly replenished from healthy people of Cuba. Dr. Perez’s “hunch” to destroy foreign derived blood products allowed Cuba to escape the ravages of HIV transmitted to hemophiliacs and others who electively receive blood. In 2002, blood product transmission of HIV is very uncommon in Cuba.
During 1985 and early 1986, a nationwide HIV screening program was initiated at a cost of US $3.0 million dollars. In 1985, condoms as a preventive measure for HIV/AIDS were introduced in Cuba. Condom use in Cuba has been problematic due to the “machismo” attitude of many Cuban men. Over 20 million HIV tests have been performed on the Cuban population since 1986. In 1987, 146 Cubans were HIV positive. In 1989, 274 Cubans were HIV positive. Due to the restraints of the Cuban economy and the USA Embargo restricting availability of modern clinical laboratory testing and the concurrent lack of antibiotics and prescription medications, Cuba, as it had done with other epidemics since 1900, instituted classic public health measures in the late 1980s and early 1990s, including a vigilant quarantine of HIV positive patients. The quarantine was used to educate patients and their families about HIV, directly observe patient treatment outcomes and to safeguard the general population of Cuba. Careful identification of every HIV positive individual in Cuba allowed the tracking back to the “source” of the patient’s HIV infection, whether in Africa or Cuba. Cuba has an extensive confidential database of HIV positive individuals along with all their intimate contacts who have contracted HIV or remained HIV negative.
Initially, there was only one HIV/AIDS sanitorium in Cuba in Santiago de las Vegas, outside of Havana to quarantine HIV positive patients. Because many HIV positive patients housed at the “Los Cocos” sanitorium were originally domiciled in other regions of Cuba, Dr. Perez noticed family members moving to Havana to be close to their HIV positive kin. This migration of families to the “Los Cocos” vicinity placed additional strains on Cuba. Many of these family members were jobless, lacked local housing or food and wanted to enroll their children in local schools.
The Los Cocos facility, a rural Havana enclave having numerous acres of land, was organized to allow HIV positive patients to have mobility, friendship among fellow patients and to produce food for local consumption at the sanitorium. Los Cocos originally had 150 small apartments to house HIV positive patients and their families. The capacity of the Los Cocos facility was quickly exceeded. High level Cuban government officials decided to open sanitoriums throughout Cuba. Although it was not his decision to authorize the sanitorium system, Dr. Perez was enlisted to implement the sanitorium system for HIV/AIDS in 1986. Between 1986-1989, Dr. Perez urged the Cuban government to relax the absolute quarantine policy for HIV/AIDS patients in Cuba. Dr. Perez successfully lobbied for the quarantine policy of Cuba to be discontinued in 1994. Long term residence at HIV/AIDS sanitoriums in Cuba is voluntary.
The goal of the panCuban sanitorium system was to have HIV positive patients live in the regions of Cuba of their original residences close to their families. These sanitoriums were designed to provide proper nutrition, shelter, and medication dispensation. There was to be no charge to the patients for their care at the sanitoriums. These sanitoriums further evolved into being patient, local public and international education resources. The sanitoriums in Cuba have been visited by many international healthcare givers. Dr. Perez personally traveled throughout Cuba and carefully selected the locations for these sanitoriums and annually personally visits all the sanitoriums in Cuba. Sanitoriums existed in the USA for many years for leprosy and tuberculosis. During the Kennedy Administration, tuberculosis hospitals across the USA were closed and re-incarnated at mental health facilities. Tuberculosis fell “off the radar” screen in the USA (and has subsequently come back to haunt the USA and the World).
In addition to the establishment of the provincial sanitorium system, Dr. Perez destigmatized HIV/AIDS in Cuba. Worries about HIV/AIDS being highly contagious and a imminent threat to the public health of the general population of Cuba lessened as Dr. Perez demonstrated the overwhelming majority of HIV positive individuals in Cuba acted responsibly and were able to return to work, school, live with their families and be treated as outpatients in an ambulatory setting. Many HIV positive patients elect to voluntarily continue to live and work in the sanitoriums to help Cuba prevent and control HIV nationwide.
The first HIV positive patient AIDS activist who continued to live at the Los Cocos facility and help Cuba with its fight against HIV/AIDS was Raul Llano Lima. Raul tested positive for HIV in 1986. Raul died at age 39. At his funeral, Dr. Perez eulogized Raul as follows: “With us in the sanatorium, he worked in the accounting department. Raul organized the inventories, help set up computerized systems to keep track of medical supplies, and in fact he headed the sanatorium’s accounting department for a period of time. Raul Llanos was known for the serious quality of his work, for his dedication. That was Raul, the outstanding worker. But at the same time, there was Raul, the HIV patient of the sanatorium since 1986: sharp, observant, revolutionary, who fought to see that the truth be known about the sanatorium inside and outside of Cuba, defending the health care policies of the Revolution and the Revolution itself. He spoke often to the foreign press and visiting groups, and he always spoke to them with sincerity and firmness of principles. In the United States—in San Francisco, New York, Philadelphia, he spoke and told the truth about our system, defending the principles and the fairness of the Cuban Revolution’s health policies.We have come here today together with his friends and family, to bid our last farewell to a companero dearly beloved by everyone. We have suffered a real loss. We join with his family, friends, patients and workers of the sanatorium in saying: We will always remember you, Raul. Rest in Peace.”
Another early activity of the sanitoriums was to assist Cuba in determining local sources of HIV who had not been diagnosed, treated or educated about their HIV status and the impact it had on HIV/AIDS spread in Cuba. In the 1990s, a film, Vencer por la vida, documented the sanitorium system for HIV/AIDS care in Cuba. The film was produced through the efforts of Javier Echevarria and Eddie Leiva.
In addition to government programs regarding HIV/AIDS in Cuba, Alberto Montano, after discussing his plans with Dr. Perez and Father Fernando de la Vega, founded the Cuba AIDS Project in 1995. The Cuba AIDS Project was originally based in Miami, Florida. In 1997, Alberto sought the help of Byron L. Barksdale, M.D., a Nebraska pathologist who had an interest in Cuba and HIV/AIDS in Cuba. Alberto lacked healthcare credentials and needed a physician in the USA to help add credibility to the efforts of his Non-Governmental Organization efforts. Alberto remained the director of the Cuba AIDS Project until his untimely death in 1999. In compliance with all USA laws, rules and regulations regarding Cuba, the Cuba AIDS Project works with Father Fernando de la Vega at Monseratte Church in Central Habana and his HIV/AIDS patient support group.
Cuba’s policy on the importance of Non-Governmental Organizations
(NGOs) is as follows:
“Grassroots NGOs have the ability to develop a regional solution to an issue-specific aspect of the HIV/AIDS pandemic. The Republic of Cuba believes that acknowledging the importance of NGOs in the fight against HIV/AIDS is a crucial factor in creating an effective global campaign to prevent the spread of the pandemic. However, Cuba recognizes that many NGOs face some problems such as lack of resources and poor networking. Therefore, Cuba suggests that governmental institutions running activities to prevent the spread of HIV/AIDS should come together with their programs for networking and select the best strategies to avoid unnecessary duplication of some activities and thus help save resources. Cuba also supports AIDS service NGOs to develop follow-up activities to the Declaration on HIV/AIDS and to share experiences and lessons learned. Cuba appeals to all nations to support NGOs, and to work together with them to sensitize and create awareness initiations to slow down the HIV/AIDS epidemic in the world, to render a long term workplace HIV/AIDS intervention program as HIV/AIDS would be a development problem for the coming many years. The most important role for the government in the fight against AIDS is to ensure an open and supportive environment for effective programs. Accordingly, Cuba firmly holds the viewpoint that it is crucial that governments integrate and accept findings and strategies recommended by various NGOs rather than refusing them.”
Cuba now produces anti-viral medications (AZT, d4T, ddI, ddC, saquinavir, and nelfinavir) domestically for use in its patients and will export these medications to other countries once the national requirements within Cuba are attained. Longer than most nations, including the USA, Cuba has realized the importance of nationwide supportive infrastructure for HIV patients and their families. Support facilities for proper nutrition, patient education, prevention and caring partnered with preventive or interventional therapeutics are the best way to offer hope to people with HIV/AIDS and to control HIV/AIDS prevalence, morbidity and mortality in any country. Cuba has understood and implemented these concepts for many years. Preventive therapeutics includes prevention of opportunistic infections. Interventional therapeutics includes treatment of opportunistic infections (Mycobacteria, Pneumocystis), malignancies, sexually transmitted diseases (syphilis, herpes, gonorrhea) as well the HIV infection itself with anti-retroviral medications.
Surveillance and Epidemiology: (1) Expand a population-based HIV sero-prevalence survey to be representative of the entire country (2) Expand a sentinel antenatal surveillance system (3) Evaluate the potential for additional sentinel screening and educational programs (4) Assist health officials with the timely collection, analysis, interpretation, and dissemination of surveillance data facilitated by state of the art software provided to Cuba for epidemiology and management of infectious diseases (5) Assist health officials in identifying ways of publicizing surveillance data to policy makers, health care providers, and researchers (6) Provide computers and train key staff in computer applications such as data management, data presentation, and use of data for decision making (7) Provide training and build capacity for laboratory studies to help maintain the infrastructure of surveillance system.
A comprehensive Maternal To Child Transmission (MTCT) prevention program that includes: (1) Nutritional supplementation and prophylaxis against opportunistic infections for patients found to be HIV-infected (2) Use of AZT or Neverapine, in conjunction with Voluntary Counseling and Testing (VCT) among pregnant women, to reduce MTCT of HIV (3) Voluntary testing and counseling (VCT) primarily for pregnant women and their primary sex partners (4) Rapid testing for rural sites (5) Ante-natal RPR testing and treatment for syphilis if indicated (6) TB screening for HIV+ women, as well as preventive prophylaxis (7) Treatment of certain opportunistic infections (i.e., INH for TB and cotrimoxazole for certain infections) (8) Nutritional supplementation to alleviate anemia or wasting syndrome (9) Couples’ counseling (encourage husbands of HIV+ women to seek testing) (10) Provide milk for at least a minimum of the first six months after birth of infants whose mothers are HIV positive (11) Monitoring and evaluation of programs and all HIV/AIDS related activities in Cuba.
PRIMARY PREVENTION: Voluntary Counseling and Testing (VCT) VCT should be expanded aggressively on a national basis as an integral part of HIV/AIDS program in Cuba. UNICEF should agree to train more counselors for every district. Expand VCT to non-traditional sites to target HIV positive individuals.
Mother To Child Transmission (MCTC): (1) Women are quite amenable to testing (2) Expand TB testing as part of HIV+ follow-up (3) Expand treatment of opportunistic infections and provide total care for HIV-infected persons: prophylaxis, nutritional supplementation, palliative care, (4) Assure milk and vitamins are available (at least for six months) for infants whose mothers are HIV+ positive (5) Assure RPR testing is done routinely.
Blood Banks Blood product transmission of infectious diseases is not a significant problem in Cuba. There are multiple testing sites and all blood is tested (HIV, HVB, syphilis). Non-acceptable blood is destroyed and patients harboring infectious diseases are evaluated and treated.
Strengthening Sexually Transmitted Infections (STI) management: (1) Expand routine screening, (2) Improve STI surveillance data (3) Expand drug sensitivity testing for STI (4) Aggressively evaluate and treat all patients and their sexual contacts. HIV/AIDS in Cuba is essentially a sexually transmitted disease. Vertical transmission of HIV, blood product transmission of HIV and IV drug abuse transmission of HIV in Cuba are all very uncommon.
Building Public and Private Partnerships: A majority of the population is agriculturally based. There is a national program on HIV/AIDS, directed by the Ministry of Health, to set the course for national policy
Increasing Prevention Programs for Youth: (1) An increasing percentage of the population is < 35 years of age (2) Youth should be more aggressively targeted for screening (3) In the absence of prophylactic measures (such as limited supplies of condoms due to the USA embargo’s prevention of selling raw materials to make condoms in a Las Tunas factory), youth should be aggressively advised to abstain from risky sexual behavior by clergy and adults or enter into monogamous relationships.
Supporting and strengthening national education and mobilization efforts: (1) Expand the use of radio and television in getting people to participate in VCT (2) Increase visual motivation (posters, theater, etc.) to participate in VCT. There are very few billboards and other visual reminders in urban areas. (3) Expand teaching of sexually transmitted diseases in schools.
Improving community and home-based care and treatment: (1) Expanding tuberculosis (TB) prevention and care (2) Increase active surveillance of TB (3) Expand medical evaluation for TB to all “at-risk” individuals (4) Develop comprehensive measures to prevent nosocomial transmission of Mycobacterium tuberculosis (5) Expand surveillance for drug-resistant Mycobacteria.
Enhancing Care and treatment of HIV/AIDS and opportunistic infections (1) Expand the ability of patients to access and receive anti-retroviral triple therapy (2) Expand the diagnosis and treatment of opportunistic infections (3) Develop “state of the art” feasible guidelines for managing HIV-related conditions (4) Expand capacity for home-based care (5) Monitor and improve the quality of palliative care (6) Optimize coordination of services at all health care levels, (7) offer hope to HIV patients and their families of turning HIV into a chronic disease which can be managed and allows people to return to useful work and a wholesome life.
Development of capacity and infrastructure for surveillance: (1) Expanding and strengthen HIV/STI/TB surveillance programs (2) Current accepted level of sero-positivity in the general population is about 0.03% which is significantly lower than sero-positivity in the USA (0.4%) and (3) Assure adequate capacity to analyze and interpret data
Expanding and Strengthening HIV/STI/TB surveillance programs (1) Laboratory staff should receive comprehensive training (2) Expand tuberculosis surveillance – program should implement screening of all HIV+ pregnant women (consider more widespread screening as capacity develops) (3) Expand the capacity for antimicrobial sensitivity testing, particularly among M. tuberculosis and N. gonorrhea isolates.
Vaccine Development and Clinical Trials:
Cuba is working on a vaccine to combat HIV/AIDS. The clinical trials are being coordinated between the C.I.G.B. and the IPK Tropical Medicine Institute. The country is being divided into several regions for clinical trials. When data is available, the outcome of these clinical trials will be given here.
There is a continuing need for facilitation of major activities (surveillance, epidemiology, laboratory support, vertical transmission of HIV, voluntary counseling and testing, prevention, social support, treatment, etc). Health officials in Cuba are dedicated individuals who have already established a national system to combat HIV/AIDS under the guidance of Dr. Jorge Perez at the IPK Tropical Medicine Institute. Behavioral changes (monogamous relationships, abstinence, etc.), increased counseling and voluntary testing for HIV, the delivery of medications, food and nutritional supplements, including vitamins (hunger is a potent driving force for people to enter the sex business fueling HIV spread), condoms, and informational materials to the people of Cuba must be increased to assure adequate control of HIV/AIDS in the population as well as optimal management of any patient’s disease. Educational materials in Spanish regarding HIV/AIDS should be provided extensively to Non-Governmental Organizations (NGOs) including the HIV/AIDS support group at the Monserrate Church in Central Habana.
The efforts of Father Fernando de la Vega at Monserrate Church should not be underestimated as an effective mechanism to restore a sense of community among homeless, hungry, despairing, sick HIV/AIDS patients in Havana. Local community Non-Governmental Organizations (NGOs) for HIV/AIDS patients should be established in all major cities in Cuba (Cuba AIDS Project is planning to help start these support groups in Santiago de Cuba and Cienfuegos). The Church offers a renewal in faith, love, patience, and hope for the future while simultaneously the Church ameliorates the persecution, suffering and the disenfranchisement HIV/AIDS patients and their families often experience in many countries, including Cuba. The people of the USA, through Cuba AIDS Project, have an opportunity to present, through their care, donations, and support, the “greatness and compassion of the people of the USA” directly to the people of Cuba.
Public campaigns for prevention of HIV need high priority because any funds spent are cost-effective. Preventive and interventional therapeutics must be partnered with overall prevention programs. Treatment offers hope for the future to HIV patients and their families of transforming HIV into a chronic disease (such as diabetes) which can be managed permitting people to return to school, work or enjoy a wholesome life.
The enormous increase in tourism to Cuba from many countries (Europe, Canada, USA, etc.) mandates Cuba maintain and continuously improve its HIV/AIDS program for obvious reasons. Currently, it is estimated 170,000 USA citizens travel to Cuba annually. After the USA Embargo against Cuba is lifted, there may be millions of USA citizens visiting Cuba each year. The USA does not need to have HIV/AIDS endemic and highly prevalent in its neighbor country, Cuba, with millions of USA citizens visiting in the post-Embargo era, contracting the virus, and then returning to the USA infected with new genetic strains of HIV-1 to be further disseminated within the USA.
The Cuba AIDS Project continues its efforts to bring USA awareness to the uniqueness of HIV/AIDS in Cuba. An example is recent data discovered about the genetic variation of HIV-1 in Cuba.
Unparalleled Genetic Diversity Found in HIV-1 Isolates from Cuba
The genetic diversity of HIV-1 isolates obtained in Cuba is "extraordinarily high," investigators report in the August 16th 2002 issue of AIDS.
Dr. Rafael Nájera, of the Instituto de Salud Carlos III in Madrid, Spain, and associates, under the auspice of UNAIDS, conducted sequence analysis of pol and env segments of virus isolated from 105 individuals resident in Cuba.
Fifty of the isolates were subtype B while 55 sequences were of non-B subtypes. Only 12 non-subtype-B isolates were non-recombinant and included subtypes D, G, C, F1, H and J. The recombinant viruses included 14 different forms, most frequently D(pol)/A(env).
Altogether, the investigators identified 21 genetic forms. This degree of diversity has only been reported from countries in Central Africa, the authors note. However, "considering that the estimated number of infections is only approximately 2000, the HIV genetic diversity found in Cuba, in relative terms, has no parallel in any other country," they add.
The authors ascribe the source of the genetic diversity to the many individuals stationed in Angola in the 1970s and 1980s, as well as Cuban aid workers who worked in several sub-Saharan African countries. The finding that more than half of isolates were of non-B subtype, but only 10 infections were acquired in Africa, indicates that viruses introduced from Africa are now circulating in Cuba.
Dr. Nájera and his colleagues also suggest that prolonged quarantine of HIV-infected individuals in sanatoria and low availability of condoms led to a high rate of co-infections, which in turn facilitated the generation of recombinants.
The authors caution that the expansion of tourism in Cuba and economic pressures that increase the likelihood of casual sexual contacts could lead to the export of multiple genetic forms of HIV-1.