By ROBERTO MENDEZ MARTINEZ
HAVANA TIMES, March 16 (IPS) – For Andres, the pork meat, cassava and white rice and black beans with which since his childhood he used to celebrate the end of the year this time did not have the usual taste, despite the special effort by his wife in the kitchen.
Barely a week before, they both decided to go see a dermatologist at a Havana hospital because the condition which had been treated for a long tine at their area polyclinic as “ringworm” was getting worse. A detailed physical exam was enough to change the diagnosis: Andrés was actually suffering from Hansen’s disease, traditionally known as leprosy.
“It’s always difficult to tell a patient he/she has Hansen’s,” affirms one of the oldest and most experienced specialists in dermatology in the Cuban capital.
“Many do not know what that is exactly, but when, forced by medical ethics, we have to explain to them that it is what they know as leprosy, they have extreme reactions: they cry, scream, some have even tried to commit suicide,” she says.
“Actually, leprosy is a curable disease today, but there is a very strong social tradition of rejection toward it in our society. More so…it is considered the worst…HIV-AIDS sufferers are already looked upon with compassion by the majority, but lepers are still the last straw,” adds the specialist.
According to any medical text, leprosy is an infectious-contagious disease. Its name comes from the Greek lepis, which means scales. It is produced by the Mycobacterium leprae. Its visible symptoms can take from 10 to 20 years to appear, which helps to surround it with a mysterious halo. It fundamentally affects the skin and the peripheral nerves and, among the chronic diseases, it is still, if not treated at an early stage and effectively, the principal cause of deformities and handicaps among the world population.
CUBA HAS REACHED THE GOAL BUT SOME COUNTRIES HAVEN’T
In 1991 the World Health Assembly approved a resolution to eliminate leprosy as a public health problem in 2000. The goal was to lower the diseases’ prevalence rate to one per 10,000 inhabitants. This was not achieved equally in the world. According to the World Health Organization (WHO), the highest prevalence rates by regions were Southeast Asia (4.5X 10,000 inhab.), followed by America (1.6) and Africa (1.3). The countries with the highest prevalence rates are currently India (6.8), Brazil (2.6), Madagascar (5.7), Mozambique (3.5) and Nepal (1.5). These represent approximately 75 per cent of the world population with this disease.
At present, thanks to the application of a multi-therapeutic treatment, leprosy is no longer a health problem for several countries, among them Cuba, which in 1993 registered a rate of 0.8 and which has continued to decrease to the current approximate figure of 0.2.
But that does not mean that it has been eradicated. For many of our neighbors and acquaintances, leprosy “no longer exists in Cuba” or “all the lepers are in El Rincon.” But that is not the case.
With the development of medicine it has been possible to find the way to cure Hansen’s disease, but not to strip it of its terrible halo, thanks to the contribution made because of the lack of knowledge on the exact way and time in which a person contracts the disease and the immemorial habit of separating those who have it so that they do not infect the community.
In the book of the Leviticus, one of the ones that enunciates Moses’ Commandments in the Bible, written almost a millennium before our age, it says that lepers will wear torn clothes, disheveled hair and covered mouth, and will shout: “Impure, impure!”, adding that while the leprosy lasts they will be impure. They will live isolated and will live outside the camp. It is also known that in the Middle Ages all those who suffered the disease had to express their condition through sign language.
Society’s attitude toward Hansen’s sufferers has not changed much among us. A nurse with a long career in the follow up of these cases affirms: “They are simply sick people who have to follow a treatment and the family, the people who live directly with them, have to be tested to know if they are infected, but not those terrible things we have seen: many couples are destroyed when the diagnosis is known, they are isolated at work, we know about one of them who used to play dominos with his neighbors from the block and when they found out that he was being treated they rudely told him ‘to have a conscience’ and not to approach the playing table or go to their homes because there were children.”
THE DISEASE DATES BACK HERE NEARLY FOUR CENTURIES
Perhaps Andres doesn’t know that in our country’s history the first evidence of lepers was recorded in the early 17th century. The first sign dates back to January 17, 1613, according to a document in the archives of the Office of the City of Havana Historian and says:
Mrs. Aldermen and Attorney General on behalf of this city and its neighbors said they have been informed that in this city there are four or six persons suffering from San Lazaro’s disease, who have come from abroad and who are walking through the streets to the detriment and prejudice of this city and its neighbors because it is a contagious disease, to which I attest to your honor that in this City there is no hospital for said disease and it is necessary to provide one and to send the persons that seem to be affected by said disease outside this City and Island or that they be sent to the closest place where there is a Hospital for this disease.
In 1662, in the Juan Guillen Cove — today Maceo Park –, thatched-roof huts were built for the care of these sick persons. Thus the name of San Lazaro Cove, which was also extended to the nearest street. On June 19, 1714, Spanish King Philip V ordered the construction in that place of the San Lazaro Hospital. Many problems and years went by before this hospital was finished in 1798 during the government of Don Luis de las Casas. During colonial times, in Cuba there were another two “San Lazaro” hospitals, one in Puerto Principe and another in Santa Clara.
U.S. MD John G. Wurdemann, who visited the island three times between 1841 and 1843, recognized the Havana institution and left a description of it in his book Notes on Cuba. This institution was located near the Espada Cemetery — next to today’s Hermanos Ameijeiras Hospital — and he describes it as built around a central square, in the middle of which there was a one-story building surrounded by small apartments as living quarters for individuals or an entire family and in the principal buildings there were separate wards for acute cases.
The visitor calculated that, at that time, there were around 30 white and 60 “colored” patients hospitalized there. The traveler found that the building’s conditions and the care for the patients were positive. It should be pointed out that, despite the fact that he was a physician, a graduate of the South Carolina Medical School; he had barely heard of leprosy and doubted that it was really a contagious disease.
The hospital was rebuilt in 1850 and in 1914 its was moved to where it is currently located, in a place called El Rincon, in the town of Santiago de las Vegas in Boyeros municipality on the outskirts of the capital. This new institution was officially inaugurated on December 17, 1917.
Starting in 1900 there were more or less trustworthy available statistics on the disease in the island. Those compiled then on leprosy in the Antilles reveal figures for Cuba that reach 1,000 sick persons. In 1938 the “Leprosy Council” was created, with which an attempt to combat this disease with better scientific criteria was initiated.
In January 1945 the testing of Promin, sodium salicylate of diphenhydramine began in Havana’s San Lazaro Hospital and starting then the treatment with sulphates was generalized in the country.
RISE IN NUMBERS DOESN’T MEAN MORE CASES
The figures that exist of persons infected with Hansen’s disease are not always trustworthy, since the only ones were those diagnosed because they went to see the doctor and the latter reported them, but many remained outside the health institutions because of economic problems or because they voluntarily wanted to isolate themselves from public view. In 1943 there were 2010 patients and in 1953 the figure had risen to 3,800.
The first Leprosy Control Program was created after the triumph of the Revolution through the Ministry of Public Health. In the following years the registered amount of sufferers gradually increased to reach the figure of 5,142 cases in 1976, which is not a sign of a real increase in the number of infected but rather a more efficient and scientific means of localizing and treating them.
Contrary to other diseases, such as polio or TB, leprosy can not be eradicated with a vaccination campaign or with healthcare improvement simply because it is still unknown in the world how the Mycobacterium leprae exactly operates for the contagion. What is possible and necessary is to detect it on time, cure the patient and reintegrate him/her into society without traumas.
“The persons hospitalized today in El Rincon Sanatorium and marvelously cared for by the Daughters of Charity, who are very dedicated nuns, are no longer lepers, they have been cured; the problem is that they have lesions and are handicapped and they have been allowed to stay there so they can have a home,” says the dermatologist who has treated Andrés. “But patients nowadays do not have to go to a sanatorium to be isolated…they are hospitalized to do tests or if the treatment has side effects, but their place is in society. They have to be physically and mentally rehabilitated and their families and everyone who surrounds them have to be educated so they can help them. Whoever rejects and mistreats them are sicker than the very patients.”
In any case the prejudices are there. In fact, in popular language, whoever feels mistreated, marginalized, say they are being treated “like a leper.” The solution is not the one chosen by Andrés, who has become evasive and doesn’t want anyone to see him: “I know that this is curable, but I get the sensation that people see the disease on my face even though I have no visible marks; what I would like to do is get lost, go faraway, or sleep for many years, whatever….”
No matter how minimal its incidence in Cuban society, leprosy deserves attention, not just a program to detect the sick and cure them, but above all one to change the social attitude and avoid behaviors that seem torn out of the pages of a medieval codex.