Academic Paper: Written for Harvard University MLA Medical Anthropology course.
FAVELA SECRETS: The Journey from Stigma to Social Marketing
A Profile on the transformation of Leprosy and HIV/AIDS in History, Science & Popular Culture.
The Greeks, who were apparently strong on visual aids, originated the term stigma to refer to bodily signs designed to expose something unusual and bad abut the moral status of the signifier. The signs were cut or burnt into the body and advertised that the bearer was a slave, a criminal, or a traitor –a blemished person, ritually polluted, to be avoided, especially in public places.” (Goffman)
As stigma has a lot to do with history, and social marketing has a lot to do with NGOs, we will focus our discussion on both of these areas in relation to Leprosy and HIV/AIDS. This research paper is intended as a profile to understanding each of these diseases in their historical and physical contexts, and how they lead to the topic of stigma. We shall survey stigma, issues surrounding diagnosis and treatment, and show how the lack of (or abundance of) social marketing campaigns has greatly transformed the social constructions of the past, and the present realities of each illnesses.
Overview of Brazil
Brazil has a population of 188 million, making it the fifth largest population in the world. Geographically, Brazil is larger than all of Western Europe, and is the fifth largest landmass on the planet. The capital of Brazil is Brasilia, and the country’s national language is Portuguese. Ninety percent of the country lies in the tropics, and it is one of the largest producers of coffee, beef, sugar, oranges, and gems. The country borders every Latin American country except for Chile and Ecuador, and seventy percent of the population is said to live in urban areas, while eighty percent are Roman Catholic. The racial makeup of the country is very mixed, mainly African, European, and indigenous, with more recent immigration coming from Japan and Lebanon, mainly living in the communities of Sao Paulo, which is especially known as being one of the world’s most cosmopolitan hubs. Brazil is part of BRIC (Brazil, Russia, India and China), the economic super-powers of the future. (Meade)
From 1964-1988 the country was under military rule, today however the country is a democratic republic, with the current president, Luis Inacio Lula da Silva, in power. The country is set for to host the next Olympics Games and Soccer World Cup. In preparation of this, the present government has decided to do a “clean up” in Rio de Janeiro’s favelas, through military invasions of the shantytowns, resulting in stand-offs and arrests of the leading drug lords. Gun violence and death from gun violence are said to be worse than in war zones in some of Rio de Janeiro’s favelas, with high daily death tolls a norm. This is one of the major effects of structural violence that we see in the conflicting tropical city by the ocean.
Overview of the Morro
The word “favela” has taken on such negative connotations that most people now use morro (hill), communidade popular (popular community), or simply communidade” in colloquial conversation. The word “favelado” referring to a favela resident is considered pejorative or insulting. (Perlman)
After returning to Rocinha years forty years after her initial research began, Perlman saw many changes occur in the favela, from changes in conversational discourse to the building of walls around the favela to hide it from the rest of the city, and block the wonderful view the residents had so become used to for generations. For the sake of this research, the word favela will be used, alongside the word communidade and Morro (in reference to Rocinha in particular). The original meaning of the word favela, should be know. It is a word of beautiful and historic meaning, referring to the abundance of Favela trees, which were growing in and around the “morro” when Rocinha was first settled.
Rio de Janeiro is the second largest city in Brazil, and is home to Rocinha, one of the world’s largest and most developed “shanty towns.” There are approximately 54,000 houses in Rocinha, set in 64,000 meters of space, housing around 300,000 people, and divided into 25 different neighborhoods. Rocinha is built on a steep hillside overlooking the city, one kilometer from the beach, and close to downtown Rio. As close as the favelas may be to the city, many still have dirt roads and very poor garbage, electricity, and sanitation infrastructures. Rocinha has however, a better infrastructure than most favelas: the main roads are paved, the garbage collection (although not perfect) is present, and there are 100,000 legally registered electricity meters throughout the favela –however most houses tap into wires in a nearby street to save what little money they do have. Due to its recognition in the international press and media Rocinha has managed to draw many international donors in recent years, as well as volunteers and NGOs. There are even favela tour companies that have popped up in recent years –which, contrary to belief, are welcomed by many of the residents as a sign of advancement since the businesses are legally owned by local favela youths. Despite its popularity with international visitors, the favela still has on-going problems in many areas of health, namely HIV/AIDS, TB and leprosy, resulting from decades of structural violence.
“Why does no one ask how many people were killed by disease?” asks a resident from Rocinha, in response to a BBC reporter investigating on the gun deaths and gangs in the community.
“The bar-owner told us she had no electricity for the past five days; no water for the past two months. ‘You ask about violence?’ said one community worker. ‘That’s the violence that has an everyday impact on people’s lives. Not the shooting that happens only when the police come in and make trouble’ “ (Lustig)
Brazil has the highest rate of Leprosy in the world after India, and child prostitution is second to Thailand. There are many issues leading to poor health factors in the favelas:
(1) Lack of education and unemployment: many residents feel they are left with no other alternative, and turn to prostitution or drug trafficking to survive. Many working in the ex industry are not educated on safe sex, and the majority are pressured into unsafe sex with clients for more money, or through violence. Many of these women (and men) are high risk factors for HIV/AIDS and STIs.
(2) The physical living environment: houses are not sturdily built into the rock on the hillside and with rain, mudslides are not uncommon. Flooding, water sanitation and garbage are not always taken care of in a timely manner. This can often be a causal factor in developing tuberculosis, cholera or leptospirosis.
(3) Lack of money: this often results in low rates of vaccinations and lack of food intake, which are factors that have been attributed to the development of leprosy.
(3) Social Stigma: the communities in Rocinha (like most favelas) are very tight-knit, making it difficult for residents to seek diagnosis or treatment of a problem, out of fear that it will lead to rejection by the community, this is especially true in the case of HIV/AIDS and Leprosy, which are the most stigmatized of illnesses.
“The walls are supposedly to protect the natural environment by limiting favela growth, and to “pacify” the favela territories by controlling the drug traffic, but the people I spoke with say they are being built to hide the favelas from view in anticipation of the 2014 World Cup and the 2016 Summer Olympics…. Residents feel imprisoned and demeaned by the walls, which are aggressively ugly and out-of-place in a colorful community situated in the midst of greenery…. [there are] 80 favelas currently in line to thus be fenced in.” (Perlman)
Dr. Paul Farmer’s analysis in An Anthropology of Structural Violence is a perfect response to the above statement by Perlman, and in response to the facts denoted above in regards to the favela. Farmer’s definition speaks of a system, which oppresses a group, and the vicious cycle, which as a result repeats over and over, until “amnesia” sets in and the blame is forgotten. This definition is also very much in tune with the Berger and Luckmann theory on the social construction of reality, and the repetition of myth until it turns into fact.
“ Structural violence, is violence exerted systematically –that is, indirectly –by everyone who belongs to a certain social order: hence the discomfort these ideas provoke in a moral economy still geared to pinning praise or blame on individual actors. In short, the concept of structural violence is intended to inform the study of the social machinery of oppression. Oppression is the result of many conditions, not the least of which reside in consciousness. We will therefore need to examine as well, the roles played by the erasure of historical memory, and other forms of desocialization as enabling conditions of structures that are both ‘sinful’ and ostensibly ‘nobody’s fault.’ ” (Farmer)
The Importance of Arts and Media in Brazilian Culture
“Very often it is popular culture, as much or more than impersonal, political or economic events, that engross the people of a nation and help them to define who they are on a day-to-day basis.” (Meade)
Music and “Funky” Parties
In the 1990s there was an explosion of Brazilian hip-hop music, termed Funky, which emerged. Following in the tradition of the Samba generations, Funky managed to unite the rich and the poor through music and dance. Out of control parties until the light of day are reminiscent of the race and class mixing, when Samba was at its peak. The events take place in the streets, and are generally “policed” by the local favela-boss or gang. It is said to attract many of Rio’s wealthy kids. who come to “slum it” in the favelas. The parties tend to be a profitable business for the favela, where “Favelados” are paid to watch over the cars of visitors, and are “employed” as bouncers. There is generally an admission charge at the gate, and alcohol can be bought on-site. Although the parties are not legal, they bring revenue to the poor areas of the favela, and unite youths that would generally not meet in any other setting. Nevertheless, there is a danger-factor at the parties, as they are run by crime syndicates, which have “special agreements” with local police. In 2002, a journalist was executed at a Funky party, for unraveling links between drug traffickers, Funky organizers, and the police. (Meade)
Soccer and its heroes
Soccer is the sport of choice in Brazil, and has been throughout much of its history. So important is the sport that even during the military dictatorship the government built soccer stadiums and promoted the sport to gain more popularity among the people. (Meade) Today, Brazil’s soccer team is one of the best in the world, and it leaves behind legacies such as Pele (officially a National Treasure of Brazil) and Ronaldo. The use of soccer players in social media campaigns, have proven the most successful of campaigns. Today soccer players are more than happy to be active in the community and use their fame to better various causes.
Soap Operas and telenovelas are very popular in Brazil. They are generally shown at night and are the main source of entertainment. Telenovela popularity originally grew during the dictatorship when there were strict curfews at night, which meant there were no nighttime entertainment outings allowed. During the dictatorship, televisions became a staple, as they were easily available to all. (Meade) As a result, Brazilians were able to watch telenovelas daily, which more than often had stories catering to the government’s messages. As opposed to soap operas, which are shown during daytime hours and are continuous, telenovelas generally have a shelf life of 2-6 months, where a saga will begin and end. Telenovelas have been some of the best ways to disseminate information and educate the public on various issues. There has been a Telenovela with a HIV positive patient, in which the audience followed the character as he learned to take his antiretroviral medication. In my research I have not been able to find evidence of a telenovela character afflicted with leprosy however.
Televisions and Refrigerators
Brazil is a TV viewing nation. More households in Brazil have televisions, than they do refrigerators. (Meade) It is estimated, less than a million people read a newspaper daily, while 50 million people minimum are said to watch television daily. Music, soccer and television are what bridge the gap between the class differences in Brazil, and allow for the country to profit from its international acclaim in other Latin American, and in some cases in the US, Europe and Asia. Television serves the poor as an alternative to other forms of entertainment and outings –such as the movies, the theatre and restaurants– which are too expensive. TV Globo is the main television company in Brazil, it has somewhat of a monopoly on the game with its 35-affiliate stations, and very little competition in its way. TV Globo has played a huge part in social marketing campaigns, donating millions of dollars of airtime to the two Leprosy campaigns organized by government initiatives over the past ten years, and an accumulation of millions of dollars every year toward the continued social marketing efforts of HIV/AIDS.
Leprosy: History and Science
“Leprosy has afflicted humanity since inmemorial. It once affected every continent and it has left behind a terrifying image in history and human memory – of mutilation, rejection and exclusion from society.” (World Health Organization)
Generally associated as the disease of the disfigured and deformed, victims of leprosy were ostracized by society and forced to live in permanent isolation throughout many stages in history. Dating back to biblical times, the disease afflicted all cultures across the globe (most especially in subtropical and tropical locations), leaving behind a legacy of destruction, fear and stigma still felt to this day. Many people are of the belief, that leprosy no longer exists in the modern world, however this is far from the truth. In 2010, Brazil had the highest rate of leprosy after India, with a prevalence rate of 3.2 per 10,000, and a case detection rate of 30,000 to 48,000 per year. (WHO) Between one and two million people are said to be seriously affected by the disease worldwide, suffering form visual deformities and irreversible disabilities requiring care.
Compulsory isolation centers or “colonies” existed throughout history to exclude leprosy sufferers from society, and all the way up until the 1970s, there were isolation centers in the U.S., one in particular where patients and prisoners were even mixed together in one experiment. Leprosy treatment centers today however, are a far cry from what they once were. Today patients choose enter a facility voluntarily, are able to be accompanied by family, and have full medical treatment and counseling services available to them, as well as entertainment and shopping facilities on-site. However, as the disease is curable however, the majority of patients live at home while receiving treatment. Unless left for a very long amount of time, deformities are generally not prevalent in this day and age. People living in urban cities generally do not get to a stage of visible deformity in the disease as city-living places so much emphasis on physical appearance; crowding makes it difficult to hide away; and clinics are close in proximity. Rural living, especially in the Amazon or in India, often tells another story.
Leprosy is caused by bacillus, mycobacterium leprae, which is similar to the bacteria, which causes tuberculosis. It is popular belief that leprosy causes flesh to rot and fall off, however this is not the case. Bacillus leprae attacks the nerves of the body, most notably affecting the skin, peripheral nerves, upper respiratory tract, the eyelids, hands, feet, and face. Areas affected turn numb and lose their ability to feel pain, which often results in injury and infection. The longer an area is left untreated, the more there is a risk of deformity or amputation. Much like tuberculosis, leprosy is transmitted through breathing, however unlike tuberculosis (and again contrary to popular belief) leprosy is not a highly contagious disease. Most people have a genetic immunity to leprosy, around 90% – 95% of people, however individuals are susceptible to the disease should they be living in close quarters or intimate with an infected individual. (ILEP)
The mycobacterium leprae was discovered by Gerhard Hansen in 1873, however treatment did not exist until the late 1940s with the antibiotic, Dapsone. Very soon after its introduction however, resistant strains widely appeared, and today leprosy is generally cured by a cocktail of MDR antibiotics. Much like MDR-TB, adhering to treatment is crucial to cure and to the prevention of new resistant strands. Many patients discontinue treatment due to the visible side effects of the medication, one being a change in skin color and tone, the other being weight gain.
Major indicators for people with the disease are: low education level, having experienced food shortages, bathing weekly in open water bodies, and low frequency of changing bed linen. Presence of the BCG scar was found to be a highly significant protective factor. The BCG vaccine is a tuberculosis preventative vaccine, which generally leaves a scar. The link between this vaccine and lower occurrences in leprosy, proves the similarities with the two diseases, and the importance of this vaccination. (White iii)
Diagnosis, treatment and costs
Generally symptoms appear in the form of white patches on the skin, or thickened peripheral nerves. Clinical diagnosis usually consists of a skin smear biopsy of the affected area, followed by a course of different antibiotics to be taken daily. Leprosy treatment falls into two categories: the weaker and more common, paucibacillary leprae (few bacilli) and the stronger, multibacillary leprae (many bacilli). Each group, abbreviated as PB and MB, has a different course of treatment. It is widely believed by the medical profession that immune responses to the disease are based on the strength of an individual’s particular immune system, however evidence of susceptibility has not been proven any higher in tuberculosis of HIV/AIDS patients.
A skin smear generally requires a small cut or scrape, unless the patient already has an open wound. After a skin smear a patient will generally require small bandages on the smear locations. These bandages have become recognizable in various communities afflicted by the disease, as “leprosy bandages.” Many patients are reluctant to seek diagnosis or continue treatment, out of fear that bandages will advertise their condition to the public. Since 1995, WHO has supplied free multi- drug therapy (MDT) to leprosy patients worldwide, as part of their “Final Push” campaign. A combination of three drugs are required for MB-leprosy, and two drugs for PB-leprosy. Treatment of leprosy with only one anti-leprosy drug will always result in resistance to that drug, and any mono- therapy for either type of leprosy has been considered “unethical” and dangerous. (WHO)
Stigma and Hansen’s Disease
In Brazil, the word ‘Lepra’ was outlawed and replaced with ‘Hansen’s Disease’ due to the high level of stigma and historical myth associated with the word. The name change did result in some unintended consequences however. The word Hansen in its Portuguese pronunciation sounds very similar to the word cancer, which has caused wide confusion in diagnosis and understanding of the disease. The link between leprosy and Hansen’s Disease is not widely known either, unless discussions and social interaction lead people to make the link between the two. In some diagnosis centers, patients are told they have Hansen’s Disease, and the word leprosy is never mentioned, a choice decided for a number of reasons: (1) The stigma associated with the brutal history of the disease, still builds up fear in people, resulting in very late diagnosis or no diagnosis. (2) The fear of having an “incurable” and “disfiguring” disease is too much for many people to face. (4) the fear of the community shutting one out, also dissuades people from seeking diagnosis. Many people have been diagnosed with Hansen’s Disease, only to find the link to leprosy much later on. In more recent studies, social scientists and health care workers are choosing to use the word leprosy more often, as they believe that elimination of the word, or fear of using the word by medical professionals, only assists in propagating the myths and stigma of the disease.
Recent studies have shown that individuals of Roman Catholic faith (eighty percent of the population) were found to stigmatize and look down upon individuals with leprosy, more so than individuals of other faiths. Generally staunch Roman Catholics believe that those afflicted with the disease are being punished for their sins. Studies have shown that Roman Catholics of strong faith, are also more likely to stop contact with friends who are afflicted by the condition.
“Many people in the favela still believe that “lepra” comes from dogs. This “may derive from the fact that lepra is also a word used for dog mange. This is one of main reasons, along with the historical stigma, why the word was outlawed in Brazil.” A campaign put in place to clarify this misuse of language and misunderstanding would be a good idea. I have seen no campaigns as of yet, which deal with this stigma. (White ii)
Appearance: Bandages, Skin Color and Weight Gain
New instructions on skin smears have determined that only two skin smear locations are required, one on the earlobe, and the other on a skin lesion, or on the other ear lobe if no lesion is present. However, many physicians are unaware of this and using old methods of instruction, which state six smear locations as being required. Widespread education on the new skin smear instructions, perhaps posters and pamphlets sent around to doctors’ offices and skin clinics, would soon enough clarify this problem and solve any more heartache. Physicians need to be made more aware of the stigma associated with the bandages, especially bandages on the earlobe, and need to take the time to consider other locations for skin smears, depending on the patient, their lifestyle, and preference. While skin smears are not painful, they are uncomfortable. Patients need to have good experiences with physicians, and feel that their concerns are worthy and acknowledged by the physicians if they are likely to return or convince others to do so. This is where caregiving and acknowledgment are of the utmost importance in the doctor-patient setting. Dr. Arthur Kleinman’s writings on the importance of acknowledgment, make mention of the “silent” acknowledgment as being all the more important to the psyche of a patient, than the person who is interacting and caregiving all day long, yet not acknowledging the pain or illness, thoughts or feelings of the patient.
“I do believe that what doctors need to be helped to master is the art of acknowledging and affirming the patient as a suffering human being.” (Kleinman)
With one of the drugs administered for treatment, body swelling, swelling of the face and weight gain is commonly experienced. As a result it has been found that patients self-esteem diminished, and self stigmatization resulted in their social isolation, especially in younger women, most notably because of the “cultural ideals that link femininity, youth, and slenderness in Brazilian society.” (White ii)
Cassandra White, is one of the leading anthropologists in the area of leprosy in Brazil, in particular in the favelas of Rio de Janeiro. In relation to change in skin tone, White writes:
“Both men and women I interviewed expressed distress about uneven darkening in skin color that is commonly associated with MDT drug clofazimine. Although transitory, these changes evoked unwanted comments from members of patients’ communities…. Among the patients I interviewed, several expressed their dismay at being perceived as ‘black’ or ‘darker’ (mais moreno), suggesting a concern with a change in racial categorization in a country where skin color and class association are often linked…. For these patients the most troubling part of these skin tone changes was that their friends and acquaintances noticed and remarked on them, thus noticing there was something wrong with them, even if they did not specifically know they had Hansen’s disease.” (White iii)
In The Social Construction of Reality Berger and Luckmann discuss the “construction of reality” in society as being “reality”. Any information however true or untrue, that is disseminated, retold and repeated, until it becomes habitual, becomes a reality. A story, a myth, an action, an expression, a gesture, an old wives tale and the like, when information, gossip and stories become habituated in the dialogue or action of a group, the original form is forgotten, and the present reality of the term is considered truthful, a-given, and as having always been fact. This can very much be assumed for the construction of an illness, and the construction of stigma, which are rather much the same. In relation to leprosy, one of the most socially constructed (and misunderstood) of the illnesses, we can still find the remnants of historical construction in western society today. Where education on the illness is not widely known in middle and wealthy countries (due to the fact that the illness is almost non existent in many places) popular stars have been known to add to these constructions either through their lack of education, or through the “construction of illness” taken from history books and films. Sharon Osbourne (wife of singer Ozzi Osbourne) was heard uttering “I hope whoever has it gets leprosy and their finger falls off” * in regards to a ring that was stolen, and Anne Hathaway (actress) was heard saying “I look like a giraffe with leprosy when I fake tan.” **
Apparently these celebrities must believe that the disease is not present in this day and age. If this had been in relation to highly mediatized illnesses such as cancer or HIV/AIDS, such comments would have stirred outrage and public apology. However in these instances, these comments went by unnoticed. The general public in the US and Europe have no idea that leprosy still exists today. Nevertheless, it is lack of education and comments such as these, keep stigma alive. Although these actors speak in English, and many live in the US and Europe, many American television shows and celebrities are well known overseas, and have just as much influence over youths. With the easy
availability to international television and media, celebrities are more responsible for their knowledge and lack of knowledge than they might realize.
Leprosy and Social Marketing
The Power of Television
Studies have shown that deformity is said to be the main reason for stigma over any other — throughout millennia and transcending culture, age, religion and faith. BBC producer and leprosy author Tony Gould, “recounts the story of a Nepalese woman with an ulcer on her foot who self amputates the limb with a crude knife, as she tells the journalist it is better to be an amputee than a leper.” (Marr) In Brazil, and in particular in Rio de Janeiro, within youth culture in the favela, physical appearance in held very high. This is an innate element of Brazilian culture, one where music and dance are important to everyday life, as is beach culture in Rio de Janeiro. In the context of social marketing, breaking down the stigma of leprosy in a society preoccupied with physical appearance, and still locked into the mental imagery of deformities in relation to the disease, is somewhat of a challenge. However, the power of television should never be underestimated. Commercials and telenovelas would most likely be the strongest form of education and subliminal messaging to this particular demographic.
In the Fijian Case Study on Eating Disorders presented by Dr. Anne Becker, we came to realise the power of television and its subliminal messages very quickly. Within the span of five years, a culture and community previously free of any eating disorders, was suddenly in the middle of a small epidemic. It could easily be said that self-stigmatism was one of the immediate results that television had on Fijian youths, as well as the rejection of their own physical and racial ethnicity, believing that the robust figures they had known their entire lives were suddenly “unattractive.” Suddenly the realities of a make-believe-world were constructed to become a reality that they admired and preferred.
“Several studies have pointed out that negative and hostile attitudes are a response to deformity rather than to the danger of infection.” (Gould)
Two Leprosy Campaigns
In Brazil’s first (and one of only two) major television campaigns to date, the WHO commissioned the BBC World Service Trust to conduct and produce a national mass media campaign for radio and television. From January 29th to February 27th, 2003, and through major partnerships, this was very successfully accomplished. The month-long campaign consisted of three television commercials shown more than 7000 times nationally, and 2800 radio stations given campaign spots.
The major elements of the campaign were to spread information on:
(1) how to recognize symptoms;
(2) the disease being curable, and not uncommon;
(3) how it affects many ‘normal’ people;
(4) the fact that people can live a normal life while undergoing treatment; (5) universal treatment is free for all;
(6) Hansen’s Disease ceases to be contagious as soon as treatment begins.
The results of the campaign were positive, with the campaign reaching 73-84 million people. In Rio de Janeiro, around 71 percent were exposed to the campaign, and 60 percent recalled at least one of the television spots. The three television commercials were aimed to show regular, young, attractive Brazilians, in everyday situations: on the beach, at the bank and on a date. The most popular and recalled of the three commercials, by 61 percent, was the commercial on the beach. The commercial proved again, the importance of the beach and beauty in Brazilian culture and imagery, most of all in the Rio de Janeiro favelas in close proximity to the beach.
Of the people exposed to the campaign, three-quarters recalled at least one of the campaign’s messages, and the overall success of the campaign saw a 30% rise in the overall awareness and knowledge about the disease, to include: symptoms, curability, non-contagious factors, and stigma. Before the campaign, 47 percent of people would not sit next to a person with the disease, as opposed to 14 percent after the campaign. One of the most rewarding and revealing responses to the campaign, came with the Telehansen Hotline. Before the campaign, the hotline received an average of 14 calls per day, this transformed into an average of 387 calls per day after the campaign. The campaign cost was $256,000, which was funded by WHO, and through television and radio partnerships, mainly with TV Globo, the campaign was awarded $13.1 million in airtime. (Meade)
The next major campaign was not produced until 2008, five years later. This campaign was a 15-day nationwide campaign, aired from July 6th- 20th, 2008. It included 15-30 second commercials and radio spots. It took a different perspective to the disease this time, featuring testimonials from people who once had the disease, including the face of a well-known personality, Maria de Graca, also known as Xuxa, the Brazilian Barbie, in a “reality-TV-like” address, speaking of how she once had Hansen’s Disease, and is now cured. The campaign also produced posters and pamphlets with the star and her message. This campaign was designed to educate the public about the disease, promote early diagnosis, particularly to adolescents and children. Most recent research has shown that undiagnosed adults are major factors in transmission to children and teens. (Sasakawa)
The Future of Hansen’s Disease
“The new global anti-leprosy strategy has set a new target of reducing the rate of new cases with grade-two disabilities per 100,000 population, by at least 35% by the end of 2015, compared to the baseline at the beginning of 2011. It also includes the recommendation to examine all household contacts of newly detected cases.” –ILEP.com
These campaigns not only show the importance of mass media in Brazilian culture, but also show the successful effects of television advertising in the favelas, where the disease is most concentrated, and where television watching habits and pop culture interest are high. Although the campaigns for leprosy were successful, they were too sporadic and far apart. The Brazilian government must realize this and further strengthen its partnership and leprosy-solidarity with television channels in order to guarantee continued play of the commercials throughout the year, and over many years. Special emphasis needs to be made on television over radio, which has shown to be twice as successful, although radio spots also help spread messages to a smaller degree. The periods of heavy campaigning were useful in spreading information about Hansen’s Disease, however this information is easily forgotten as people grow up and are exposed to many other campaigns (mainly commercial campaigns) in-between time. The general public forgets the messages if the message are not seen for a couple of years, as in this case. When health information as such, is on heavy rotation on the airways, once it finally disappears the public assumes that the health risk is over, or that it was not so important after all. This is why less saturation during short periods of zeal and enthusiasm should be replaced by long-term and continuous campaigning, with less saturation. This would be the most cost effective method for the long-term dissemination of information and continued reduction of stigma over time.
As well as educating the public, reduction of stigma will begin by further educating health care workers on evaluating patients on a case-by-case basis, especially in relation to skin smears and bandages. Patients who show physical side effects, especially disturbing to their self esteem –such as darkened skin or weight gain, isolating from the community– should be made aware of the counseling services and live-in clinics available to them while undergoing treatment. While these responses are key, one must not forget the underlying reason for many of these problems lies in the structural violence that has been afflicted upon favela residents for generations, including the remnants of colonialization, and the effects of mass media imagery on physical expectation.
HIV/AIDS: Diagnosis and Treatment.
HIV (Human Immunodeficiency Virus) is a virus, which attacks the immune system, leaving it vulnerable to infections caused by bacteria, viruses, fungi and parasites. All humans are HIV negative, and when infected with the virus become HIV positive. When the virus transfers to AIDS (Acquired Immune Deficiency Syndrome), the immune system slowly shuts down altogether. The virus is transmitted through bodily fluids, from sexual intercourse, to blood transfusions, sharing of needles, preseminal and seminal fluid, pregnancy, childbirth and breastfeeding.
Small blood samples are used to test for HIV positivity. The WHO policy on HIV testing states that the human rights approach to testing must respect the confidentiality of the patient, and that testing must be accompanied by counseling for those who test positive. All testing must also be conducted with consent of the person being tested. Antiretroviral (ARV) medication is the current form of treatment for HIV-positive patients. There is no known cure for the HIV virus, however the ARV medication can slow down the course of the disease. Generally, a cocktail of ARV known as HAART (Highly Active Antiretroviral Therapy) drugs are taken by HIV-patients.
HIV/AIDS: The Journey from Epidemic to ‘World Model’
The history of HIV/AIDS in Brazil, has been a very interesting one, from the World Bank forecasting an AIDS epidemic for Brazil, to the government spearheading a dispute over ethics and human rights with US drug companies, Brazil has come out on top and as a leader in the management and control of HIV/AIDS. In the process, the Brazilian government’s efforts have saved the lives of millions of HIV infected individuals worldwide, by enabling ARV medication to be financially accessible.
When HIV and AIDS first appeared in Brazil in the early to mid 1980s, there was a lot of stigma associated with the disease, as there was worldwide. In the first decade of the disease, it was believed to be the disease of homosexuals, sex workers, and drug addicts, who were all highly discriminated against. The Brazilian government passed a law as early as 1988, outlawing HIV testing of individuals for jobs or entry into educational institutions, as well as the dismissal on the same grounds. By taking the human rights element into hand as early as possible, Brazil took a step in the direction of eliminating stigma, rather than allowing it to build up and feed off itself.
An important aspect of HIV/AIDS that is especially relevant today (and should be adopted by over- bureaucratized countries) is the intended lack of racial categorization in research methods, especially in regards to health. A US research and statistical study found that racial categorization in Brazil was difficult to produce due to lack of categorization in their research, and the self-altering views of individuals in regards to their own categorization. One American researcher pointed out that 12 percent of respondents in one study had changed their racial category from one year to the next. In “Boundary Institutions and HIV/AIDS Policy in Brazil and South Africa” boundary institutions are described as sets of rules that regulate racial and ethnic group categories, and are either strong (meaning very labeled) or weak (meaning close to non-existent). (Gauri) When put in similar terms, one could say that Brazil’s blurred racial lines are the reason HIV/AIDS (and other diseases) have not been racially stigmatized as in many other countries.
High levels of social interaction across racial lines have contributed to weak institutional boundaries, much as the weak boundaries have contributed to the virus not being interpreted as affecting a particular demographic. “Official Brazilian discourse suggests that group identity is understood less as an essential trait and more like a superficial attribute.” (Gauri) This socio-cultural psychology has prevented the racialization of HIV or “blame politics” which other countries have had central to the debate, such as in the US and South Africa. In South Africa, extreme categorization has produced “blame politics” whereby “whites often believed it was a black or gay disease, and blacks believed it was a white disease or a plot to control the black population.” (Gauri)
HIV/AIDS: Brazil and South Africa Comparison
Brazil and South Africa in the 1990s, were recently democratized, upper-middle class nations, both forecast to have out-of-control epidemics by the beginning of the 21st century. Brazil was projected to have 1.2 million living with HIV by 2000, but in 2010 this number is half, 600,000. In 1980, Brazil’s life expectancy average was 66 years of age, and South Africa’s was 63 years of age. However, statistics today tell a different story. Brazil’s life expectancy had been raised to 69 years of age, and is still rising. South Africa’s life expectancy on the other hand has declined to 46 years of age. (Avert) This difference in life expectancy lies deeply within each countries’ management and control of HIV/AIDS, most especially in the last ten years. WHO, UNAIDS, USAID, and The Global Program
on AIDS, were all major players in funding, and putting pressure on governments to act immediately before become an epidemic arose. Brazil was very fast to react, taking the WHO forecast very seriously. South Africa on the other hand, while still dealing with the after effects of Apartheid, chose to focus on Tobacco Control, an important feat for South Africa which for so long had been indirectly self-funding the apartheid regime through their tobacco industry, and as a result fallen ill to the many effects of tobacco use.
While Brazil focused on HIV/AIDS however, South Africa is now close to epidemic levels. In 2009, South Africa had the highest number of HIV/AIDS cases in Africa, with 5.6 million living with HIV/AIDS, 1.9 million deaths, and a population of 49 million. While Brazil (although the highest HIV/AIDS prevalence in Latin America) has 730,000 cases of people living with HIV/AIDS, counts for 15,000 death per year, and has a population almost four times the size of South Africa, at 190 million. One percent of the population in Brazil, in comparison to twenty percent of the population in South Africa, is living with the virus. (Avert)
Brazilian Government: Breaking International Patent Law
In the 1980s, the Brazilian Ministry of Health declared the HIV/AIDS virus, “a public health problem” and not a medical problem. Some years later, and after the WHO forecast, Brazil decided to focus all its efforts on reducing the HIV/AIDS rate in the country, and turning the forecast around. In 1996, congress approved a national legislation ensuring free access of ARV/HAART drugs to all HIV positive patients in Brazil. In order to manage the high costs of the drugs, Brazil began publicly producing several generic antiretrovirals. When prices continued to climb, Brazil threatened the US pharmaceuticals that if they did not lower their prices, Brazil would continue to produce its own drugs. While the pharmaceutical companies were enjoying the monopoly and benefits worldwide, millions suffered unable to afford the drugs, and millions died. In response to Brazil’s threat, the major US drug companies together filed a suit against the Brazilian government, through the WTO, stating breach of patent laws. With much international advocacy and pressure, including support from the UN Human Rights and World Health Assembly who “urged the WTO to find the proper balance between intellectual property rights and public health,” (Nunn) the suit was dropped. The Brazilian government claimed that breaking patents for public health or during a national emergency is legal under the TRIPS Agreement, article 31, and is a basic human right. Still today, international lawyers dispute the claim by the Brazilian government, however most have sided with them, for their sheer determination and the spearheading of a international movement, which has made HIV/AIDS drugs available to millions.
“The cost of an AIDS cocktail in 2000 in Brazil was five to ten times what Brazil pays for the same cocktail today. It wasn’t until Brazil publicly challenged pharmaceutical companies about AIDS drugs prices and threatened to produce drugs locally that companies lowered their drug prices. As a result of negotiations with pharmaceutical companies, Brazil has saved over one billion dollars on AIDS drugs.” Fernando Henrique Cardoso, President of Brazil, 1995-2002. (Nunn)
The Brazilian Government: “Conditions” and Funding Policies
Brazil’s WHO funding of the HIV/AIDS-NGO Initiative, was a huge step in the direction of their success-model. While Brazil agreed to the “conditions” imposed in relation to this funding, and agreed to the decentralization and partnership with NGOs, there have been other instances where the government has stood their ground and lost funding. Some will say it is easy to make such decisions on “principals” as politicians sit in their ivory towers, while others argue that Brazil has always kept a healthy balance between the greater good of public health, and keeping its integrity in the face of adversity and bullies.
In the article Whose Policy is it Anyway? Ukuonzi and MacRae speak in terms of the Danish government and the well-known “conditions” that they imposed on Uganda, involving support for their DANIDA-monopoly on medicine stores in the country. This was a “condition” to aid –aid, which had originally been given as, ’emergency aid.’
“The process in which donors sought to influence the adoption of these policies was by imposing strict conditionalities, not build coalitions and supporting national fora for debate and discussion. Reinforced by lack of information available on the likely outcomes of different policy options, has brought into sharp contrast the power of international agencies to control the policy domain. This situation has heightened the need for policy partnerships between international and national actors.” (Okuonzi)
The US might have very well agreed to the conditions of the HIV/AIDS 1993-2003 funding, however when WHO wanted Brazil to partake in the WHO-led HIV-vaccine trials, the Brazilian government rejected the request stating: “Brazil will not be a guinea pig.” Their refusal to abide to the new conditions, led to a temporary freeze on funding. (Nunn)
In 2003, the Bush administration announced a five year $15 billion emergency plan, PEPFAR, to help with HIV/AIDS relief. The funding was to be allocated to federal governments and non- governmental organizations in countries with high case rates of HIV/AIDS. Funding was on the condition of the Anti-Prostitution Pledge. A pledge put in place by the Republican, conservative Bush administration, in belief that HIV/AIDS was in part a direct effect of prostitution. The pledge placed further stigma on sex workers, and blamed sex workers in part, for the epidemic, causing international controversy. The US government urged Brazil to publicly declare opposition to prostitution or lose $40 million of aid. Brazil rejected the act, believing in their laws, however as a result many NGOs suffered directly after the decision was made, although the government worked to replace the funds.
The Rise of NGOs
One of the strengths in the Brazilian HIV/AIDS success-model, was the government’s decentralization and partnership with NGOs. Starting in the late 1980s the Ministry of Health, along with the help of NGOs, decided that it would need to work fast to prevent constructions of the illness –most especially those made by other countries. Media campaigns were produced as early as the late 1980s as an attempt to avoid negative portrayals of AIDS victims, promote what it called “solidarity,’ and reduce the stigma placed on people carrying the virus. Empathy and shared risk was at the heart of campaigning, as well as acknowledgment of the disease across all levels of society. One of the aims was to enforce the idea that HIV was not a disease of color, gender or sexual orientation. The advocacy of these NGOs was most notably recognized in the favelas where many of the first cases emerged.
In 1999, NGOs exerted pressure on the government for the return of a program director and to receive more HIV/AIDS funding for treatment and medication. Their insistence resulted in the return of the program director for HIV/AIDS, and the subsequent funding they had asked for. The work of NGOs and their consistent advocacy, is the major reason why the HIV/AIDS forecast did not become a reality.
The World Bank funded the NGO-Government HIV/AIDS initiative, from 1993-2003, with a total amount of US$325 million. Starting in 1993, with the first installment, NGOs were able to begin their work in education, prevention, diagnosis and treatment, and in the 1990s, several laws were passed, most importantly the “Health-For-All” law, which guaranteed free ARV/HAART medication, treatment, monitoring and care to all Brazilians.
It was as Brazil came out of a military rule that HIV/AIDS was introduced. The response to HIV/AIDS is seen to many as a response to the democratization of the country. After military rule ended, activism and volunteerism was at an all time high. To add to this, there were a number of exiled key figures of the anti-military regime, which returned to the country with HIV, these figures played an especially big role in the HIV/AIDS activism of the late 1980s. The number of NGOs working in the area of HIV/AIDS raised from 120 in 1993, to 480 in 1997 –only five years later. (Gauri) In 2003, there are a reported 798 NGOs working in the area of HIV/AIDS, a majority of which work in the favelas of major cities, most notably Rio de Janeiro and Sao Paulo.
HIV/AIDS: Social Marketing, Educational Programs and Stigma
All of the past associations made between HIV/AIDS and certain demographics, are today widely recognized as social constructions of the past. The popular view is that “HIV has no face” and that there are no visual traits associated with a person who is HIV-positive over a person who is HIV- negative. The stigma associated with HIV has been reduced through massive worldwide campaigning, the use of mass media, popular culture, celebrity advocacy, world HIV/AIDS days, and general education.
Initially campaigns advocated abstinence, showed the devastating results of the virus and the frightening effects of leaving testing too late. While effective in making an impact, these campaigns had unintended consequences. They unintentionally scared people away from knowing their status, rather than convincing them to get tested. The new campaign strategies have now shifted to ‘being social responsibility’ and ‘sexual freedom while remaining safe.’ Music, dance, sports, pop culture and celebrity endorsement of campaigns has proven highly successful. These particular campaigns are more taken notice of, prompt more discussion in the community, help to reduce stigma, and reduce the fear factor.
On-the-ground Awareness Campaigns at entertainment events is very successful –such as the Funky parties in the favelas, outside of nightclubs on weekends, at major concerts, Capoiera festivals, Forro nights, Samba events and carnivals. Condoms are handed out, as out pamphlets, T-shirts, hats, sunscreen, key chains, bracelets and other promotional materials of the like, with campaign logo, phone number and web address clearly visible. With the structural violence experienced in the favelas, lack of education and employment opportunities have forced youths to join gangs and enter the sex industry –some willingly as they see no other option, others against their will. Awareness campaigns focus on these areas as well, with young volunteers taking to the streets –usually locals who understand the issues and know the community– handing out condoms and informational pamphlets with phone numbers. This form of street-advocacy leads to the beaches of Rio de Janeiro quite regularly. As Rocinha, and a number of other favelas are close in proximity to the beaches, many young women (and men) are lured to the beaches where tourism is central. Sex tourism is among the highest in the world in Rio de Janeiro, with the majority of young men and women (even children) involved in the industry, from the nearby Favelas. In recent years, NGOs have worked hard to reduce the stigma associated with the sex industry, in order to help reduce violence against sex workers. Regular volunteers and NGO workers are in contact with sex workers regularly, to give them advice, free condoms and sex education.
Television, Radio and Print Campaigns have been created over the years, and have worked on reducing the stigma associated with sex and HIV. NGOs and HIV-advocates have realized that abstinence is not realistic in the modern world, or in Brazilian culture, and have worked on safe sex campaigning instead. Television campaigns and strategically placed magazine and billboard print media are also important to campaigning. Radio has been less successful, as have newspapers, while “National HIV/AIDS Days” have proven extremely successful due to music and dance concerts.
Educational programs have been set up throughout a large number of Favelas in Rio de Janeiro, in particular in Rocinha. There are a number of very well known and successful programs, which aim to keep the both children, adolescents and adults off the streets, having them involved in music, film, language-learning, computer-learning, and sports. The NGOs, especially in Rocinha, have attracted many international volunteers, often students and travelers who give their time to the various favela communities. The objectives of favela-based programs, are to keep children and teens off the streets, teach skills to all people in the community, have give children and teens a chance to distance themselves from “street-activities” which can cause them further harm. Many organizations also assist favela residents in finding employment, starting businesses, personal empowerment, fitness, and gaining access to diagnosis and treatment for illness, disease or injury. The programs often educate people on how to be involved in the socio-politics of the favela, teaching about social and political issues, health concerns, hygiene and sanitation, and other issues of importance.
Major Social Marketing Campaigns
Fique Sabendo – Be in the know: One of the major media campaigns to promote universal HIV- testing. The central message being, everyone should know their status. Before the unveiling of the campaign, models at the biggest and most prestigious Sao Paulo fashion show, wore T-shirts decorated with the campaign logo –a smiley face with a plus and minus sign for eyes, representing the signs of HIV positive and negative testing results. After the unveiling of the campaign, television commercials and newspaper adverts went into heavy rotation.
45 million! This is the number of condoms handed out every month at big events, such as carnivals, parties in the favelas, nightclubs openings, and other events associated with increased sexual activity. “During the 2009 carnival, 20 million condoms were handed out…. Condom use has been promoted by NGOs working in the favelas, and young people are educated and encouraged to act as ‘information spreaders’ passing information on to their peers.” (avert.org) Brazil is the largest importer of condoms in the world, buying 1.2 million condoms in 2009 alone. To add to this, a state- run factory in the Amazon rainforest, where rubber is produced, began producing 100 million condoms a year.
Controversial commercials: Teen Sex and Homosexuality These have been very controversial, making waves across the world. The commercials tackle issues such as teen sexual practice, homosexuality, and the rights of HIV-positive people and sex workers. A number of Brazilian celebrities have also given their faces to promoting HIV/AIDS, one recent campaign with pop singer Kelly Key promotes safe sex among teens: “Show how you’ve grown up. This carnival, use condoms”
Controversial commercials: Sex work is my profession A high profile campaign based on a cartoon character Maria Without Shame advertised on posters, leaflets and stickers, in women’s toilets all over Rio de Janeiro, Sao Paulo, and very heavily in the favelas, including Rocinha. The message: “You need have no shame, girl. You have a profession.” The campaign also featured a radio spots with a famous Brazilian singer. A 2009 study found that after the campaign 60% of sex workers knew where to take a HIV-test.
Post Offices Fighting Against AIDS This is the most recent campaign, launched mid-2010: “Post Offices are Fighting Against AIDS. What About You? Protect Yourself, Use Condoms.” A special stamp with logo has been produced, as well as postcards, letterheads and other stationary.
Notable NGOs / Educational Programs
IBISS – Instituto Brasileiro de Inovacoes em Saude Social. The organization runs more than 60 different projects around Brazil, most especially in the favelas. One of the main organisations dealing with Hansen’s Disease, as well as human rights, TB and HIV/AIDS. IBISS works with sex workers, street kids, people in dumpsites, and the disabled.
Viva Rio – One of the main organizations in youth advocacy, education, training, health and violence prevention in the favelas of Rio.
Instituto da Crianca – Working in the areas of health and well being of the child.
Circo Do Mundo, Brasil – Teaches circus skills to youths, while also promoting health and social issues.
TransformArte – A long time NGO, working in the area of arts in the favelas, especially promoting TB and HIV/AIDS awareness.
5X Favela – An organization, which works with youths in the favela, to make films about issues going on in the favela.
Cinema Nosso – Filmmaking organization, teaching skills to youths from the favels. Established by film director, Fernando Meirelles, The City of God.
Observatorio de Favelas – An organization which carries out research, consultancy, health prevention and social intervention in the favela.
Nos do Morro – Drama production group based in the favela of Vidigal, in Rio de Janeiro. Productions represent the issues in the favela.
UMPMRS – Union of Women for the Betterment of Roupa Suja, one of the poorest neighborhoods of Rocinha.
CIACAC – In Parque Jadim Beira Mar. Workshops in rights, citizenship, English, art, and Capoiera.
Fight For Peace – Started by ex-boxer, anthropologist (Edinburgh University, MA) Luke Dowdey (author of Children of the Drug Trade). A sports complex where boxing and other sports are taught to children and teens in Rocinha. Teaching boxing, and educating youth on health and social issues, drug and violence prevention.
Caramundo – An organization that creates opportunities through worldwide volunteer partnerships in the arts, to teach and interact with youth in urban areas throughout Latin America, including the many favelas in Rio de Janeiro.
CEDAPS – Center for Health promotion in Rio de Janeiro. Community health programs in health prevention, promotion and education in the favelas. Also teaching and training youths in various sectors.
Discussion: Social Marketing Differences and Solutions for HIV/AIDS & Leprosy
It is clear to see that the HIV/AIDS efforts in social marketing have been very successful in reducing stigma in Brazilian society, and have served as major tools in overall HIV/AIDS prevention. On the other end of the scale however, Hansen’s Disease campaigns have unfortunately been very sporadic. The major campaigns have been a good number of years apart, and each only lasted a month on the airways both times. The government’s focus on HIV/AIDS has been invaluable, however the emphasis has taken away almost completely from Hansen’s Disease. While it is true that there are 730,000 cases of HIV/AIDS in Brazil, as opposed to 37,000 cases of Leprosy, it still remains the second highest case rate in the world and numbers are not changing by much from year to year. In 2003, there were a reported 798 NGOs working in the area of HIV/AIDS, and less than a quarter of that number working with leprosy.
The stigma of Hansen’s Disease in the favela is still quite prevalent, as it is still a relatively feared and unknown disease to those who do not recall the campaigns. After commercials were aired, it was noted that the number of calls to the Hansen toll-free assistance line went up dramatically, but after the hype of each campaign subsided, so did the numbers in calls as well. Continuous rotation in the media is necessary to remain present in the of minds of the people, and to further breakdown stigma over time.
More focus on partnerships with television stations and celebrity endorsements is important, as is done with HIV/AIDS. These partnerships will help with the visibility factor and can be cost effective: (1) the association with a celebrity usually lasts in the memory of the public for years to come; (2) the long-term recycling of a commercial –through regular repetition over years (even if occasional and during low-viewer times-slots)– can become iconic and the overly-repeated message, clear. Converting the intense campaigning of the past, to less intense coverage over much longer periods, will better serve the memory of the viewers. (3) on-the-ground promotions with stickers (and other promotional objects) which usually stick around in people’s homes, hence their minds; (4) partnership with a Telenovela. The inclusion of a character afflicted by Hansen’s Disease, and played by an attractive actor or actress would: a) breakdown the stigma that only unattractive people have leprosy; b) show the character living a normal life –in telenovela-land of course! c) be viewed by millions in prime time; d) prompt conversation and the re-analysis of social constructions.
While the campaigning for HIV/AIDS has been highly successful, and the disease is no longer stigmatized as it once was, the remnants of the past are still somewhat present. While on the one hand, most people are open to being tested and talking about HIV/AIDS and sexual issues, people who have the virus are generally secretive about it, only revealing it to very close friends and family. This in itself is an advancement from the reality of secrecy ten or fifteen years ago.
With Hansen’s Disease, due to the name change people are more willing to come out about the their illness, however should people make the link between the two names, one will find that the stigma is still present and the disease still very misunderstood. For the most part people seem keep their diseases “a secret” in the communidade, unless they are involved in advocacy groups or programs working alongside the disease. As the communidade is very tightly knit and highly religious, the risk of letting “the secret” of disease out is not always worth the consequences which it might have on one’s everyday living, even with a trusty-NGO by one’s side.
Breakdown of major points
Major Stigma; Communicable Diseases
Not easily/easily contagious: HIV/HD-from dogs.
Tell tale signs: skeletal, pale, darker, heavier, swollen, deformed, bandages, lesions. Religious beliefs: people afflicted are “punished” by god – gay people, sex workers, sinners. History: leper colonies, early AIDS epidemic –films and literature keep memories alive. Facial deformities/skeletal face: monstrous, frightening.
Major Reasons for not Seeking Treatment of Leprosy or HIV/AIDS: Fear of the disease: Fear of what family and friends will think: rejection, fear of bodily changes.
Fear in change of lifestyle
Fear of pain
Lack of knowledge in regards to: Affordability Live-ability
Locations to be tested (including privacy issues)
How is it caught? (misconceptions –dogs, sitting next to someone)
The Most Effective Social Media Approaches: Taking Action! (1) Arts Programs in the favelas
(2) Media Advertising: TV, Print and Radio
(3) Health Care Workers/Volunteers: On-the-ground events and promotions
(4) Free Screenings and testing (easy to reach locations, private)
(5) National and International Days Dedicated to Major Diseases
(6) Celebrity Endorsement: commercials, sports, music, film, television, novelas, fashion, art. (7) Funding local artists to create paintings, graffiti art, dance performances, film and music projects on a particularly stigmatized topic or disease in the community. (Gallery openings and events)
BECKER, ANNE Dr. et al. “Eating behaviours and attitudes following prolonged exposure to television among ethnic Fijian adolescent girls” The British Journal of Psychiatry, 180:509-514. 2002
BERGER, Peter L. and LUCKMANN, Thomas. “The Social Construction of Reality: A Treatise in the Sociology of Knowledge” New York: Anchor, 1967.
BITTON, Asaf, et al. “Tobacco Control in South Africa” Global Health Delivery Project. October, 2010.
FARMER, Paul Dr. “An Anthropology of Structural Violence” Sidney W. Mintz Lecture, 2001.
FROST, Liz “BBC World Service Trust: Brazil Leprosy Campaign Evaluation” July 2003. http://www.paho.org/English/AD/DPC/CD/lep-who-bbc-bra-campaign-eval.pdf
GAURI, Varun and LIEBERMAN, Evan S. “Boundary Institutions and HIV/AIDS Policy in Brazil and South Africa” Studies in Comparative International Development. Fall 2006. Vol. 41. No. 3. pp 47-73.
GOFFMAN, Erving. “Stigma: Notes on the Management of Spoiled Identity” New York: Touchstone Books/Simon & Schuster. 1985.
GOULD, Tony “A Disease Apart: Leprosy in the Modern World” St. Martin’s Press, 2005
KERR-PONTES R.S. et al. “Socioeconomic, environmental, and behavioural risk factors for leprosy in North-east Brazil: results of a case-control study. Oxford Journals. March, 2006. http://ije.oxfordjournals.org/content/35/4/994.full
KLEINMAN, Arthur “Catastrophe and Caregiving: The Failure of Medicine as Art” The Lancet 371 (9606): 22-23. Harvard University, 2008.
LUSTIG, Robin “A tale of two favelas” BBC. March 18th, 2010. 2010. http://www.bbc.co.uk/blogs/worldtonight/2010/03/a_tale_of_two_favelas.html
MARTIN, B. Dr. “WHO’s Leprosy-Elimination Program targets Brazil” bmartinmd.com February, 2008. bmartinmd.com/2008/02/whos-leprosyelimination-progra.html
MEADE, Teresa A. “A Brief History of Brazil” New York: Checkmark Books, 2004.
NUNN, Amy “The Politics and History of AIDS Treatment in Brazil” New York: Springer Media. 2009.
OKUONZI, Sam Agatre and MACRAE, Joanna. “Whose policy is it anyway? International and national influences on health policy development in Uganda” Health, Policy and Planning; 10(2): 122-132. Oxford University Press, 1995.
PERLMAN, Janice. “Favela: Four Decades of Living on the Edge in Rio de Janeiro” Oxford, UK: Oxford University Press, 2010.
PINHEIRO, Gabriela. “Small NGOs in the Wake of Brazil’s Response to U.S. Anti-Prostitution Pledge” Global Health Council. July, 2005. http://www.globalhealth.org/reports/report.php3?id=225
WHITE, Cassandra. (i) “An Uncertain Cure: Living With Leprosy in Brazil” New Jersey: Rutgers University Press. 2009.
WHITE, Cassandra. (ii) “Leprosy Still a Plague in Brazil” Brazzil.com September, 2004. http://www.brazzil.com/component/content/article/81-september-2004/3280.html
WHITE, Cassandra. (iii) “Iatrogenic stigma in outpatient treatment for Hansen’s disease (leprosy) in Brazil” PubMed.gov Jan, 2007. PMID: 17229777
WONG, Mee Lian. “Designing Programmes to Address Stigma in Leprosy: Issues and Challenges.” Asia Pacific Disability Rehabilitation Journal. Vol. 15, NO. 2. 2004.
No Author/BBC NEWS. “Brazil Steps Up Leprosy Fight” June 9th, 2003. UK. http://news.bbc.co.uk/2/hi/health/2966888.stm
Life In Rocinha (username) “Life in Rocinha” Consistent Blog: May 2009 – Present. 2010. http://lifeinrocinha.blogspot.com/2010_10_01_archive.html
Sasakawa Memorial Foundation “WHO Goodwill Ambassador’s Newsletter for the Elimination of Leprosy” Number 33. August, 2008. http://www.smhf.or.jpnewsletter/pdf/nl033.pdf
Avert – avert.org
Fundacao Oswaldo Cruz – fiocruz.br
ILEP – ilep.org.uk
Pan American Health Organization – paho.org Science and Development Network – scidev.net UNAIDS – unaids.org
World Health Organization – who.int
* Female First “Sharon Osbourne’s leprosy wish” http://www.femalefirst.co.uk/celebrity/Sharon+Osbourne-13849.html
** Now Magazine “Anne Hathaway: I look like a giraffe with leprosy” nowmagazine.co.uk / February, 2009.