Francesca Tomasi received her B.A. from the University of Chicago and currently does microbiology research.
“[T]here is as yet no evidence of contagion.”
-July 3, 1981, New York Times
HIV crept into the human race decades before anyone would find it. One viral variant likely spilled over from sooty mangabey monkeys in West Africa in the 1960s; the other appeared in Central Africa in the 1930s. They lay low as a result of geographic isolation and a significantly less globalized world than the one we know today. In 1959, two men died: one was from Congo and died there. The other was a Jamaican-American shipping clerk who died in New York. In 1966, a man in Haiti became infected in what is one of the first domestically-acquired infections in the Americas. In 1975, reports of wasting and similar symptoms now associated with AIDS began coming in from Africa. It was not until a pattern of similar, rare illnesses appeared in a nation with a robust public health surveillance system that the budding epidemic would be picked up by any sort of radar.
In 1981, the CDC published its weekly Morbidity and Mortality Report. This one discussed a cluster of Pneumocystis carinii, a rare lung infection, in five previously healthy, young gay men in Los Angeles. The patients were also sick with other rare infections that the immune system should usually be able hold at bay, red flags that something was wrong with their immune systems. What at first seemed like a small series of unfortunate coincidences would turn out to be the beginning of one of the biggest – and worst – pandemics in human history. Within a day of the CDC’s report, doctors in other parts of the country, especially in New York, started describing similar cases. Opportunistic infections (infections occurring in immunocompromised individuals) were visibly on the rise, and only in homosexual men. Furthermore, an aggressive cancer known as Kaposi’s sarcoma suddenly re-emerged in homosexual men. This cancer typically had an incidence rate of less than 0.16 out of 100,000 people in the US, so its emergence in several hundred individuals within a single region was alarming. As a result, the CDC joined forces with other public health groups to establish a Kaposi’s sarcoma and Opportunistic Infection (KSOI) surveillance network. Their goal was to identify potential risk factors for these conditions and reverse whatever was causing them. On July 3, 1981, just shy of a month after the initial case reports were published, the New York Times published the first of many thousands of articles that would describe the nascent contagion: Rare Cancer Seen in 41 Homosexuals.
The New York Times’ seminal coverage of Kaposi’s sarcoma contained the very information that would eventually form the basis for the cloud of anger, hate, and fear cast over HIV/AIDS victims to this day. “…[T]here [is] no apparent danger to non-homosexuals,” one physician advised in the article, “…no cases have been reported to date outside the homosexual community or in women.” Because this “contagion” was first recognized in homosexual men, from day one it was identified as a “Gay Disease,” a devastating knockback to a global population already dealing with harsh social stigma. By 1982, half a year after Pneumocystis, Kaposi’s sarcoma, and other rare pathologies first noticeably emerged in the States, almost 300 cases of severe immunodeficiency were reported in the US. All were homosexual men, most in their thirties and forties. By mid-April in 1982, the CDC estimated that tens of thousands of individuals were affected by the disease. The term AIDS, for Acquired Immunodeficiency Syndrome, was officially coined by the CDC in September 1982 to describe a “disease at least moderately predictive of a defect in cell-mediated immunity, occurring in a person with no known case for diminished resistance to that disease.”
Suddenly, however, AIDS was no longer only infecting homosexuals. In December of 1982, the first case of AIDS in an infant was reported. The child had been the recipient of a blood transfusion. Precipitously, almost two dozen cases of “unexplained immunodeficiency and opportunistic infections in infants” were reported in another CDC Morbidity and Mortality Weekly Report. By April of the following year, the CDC had widened the AIDS-susceptible population to “homosexual men with multiple sex partners, injection drug users, Haitians, and hemophiliacs” (individuals with a rare bleeding disorder in which the blood doesn't clot normally). That same year, the deadly AIDS-causing virus HIV was discovered, albeit under the name HTLV-III/LAV (human T-cell lymphotropic virus-type III/lymphadenopathy-associated virus). The CDC quickly published a report outlining the methods for viral transmission which included sex, blood transfusions, and intravenous drug use. Direct contact, food, water, air, and contaminated surfaces were officially ruled out as transmission aids. Of course, much of the world stopped listening at “deadly virus.”
“Anger and intolerance are the enemies of correct understanding.”
– Mahatma Ghandi
In October, protests and riots that had slowly been building up gained national attention: tenants in a New York home had tried to evict a physician because he was treating AIDS patients. Citing that the tenants were “frightened of the AIDS patient,” the article goes on to say that the state repelled this move. Nonetheless, the frightening uncertainty of a new, fatal illness had started to fuel public bedlam, despite the fact that HIV had already been definitively proven as a sexually transmitted disease – mere bystanders would never be at risk of infection.
HIV spread like wildfire. By 1985, it had been reported in every region of the world. At the same time, an epidemic of discrimination was also unfolding into a pandemic. The United States military began testing all recruits for HIV and banned anyone who tested positive. Children with HIV were barred from schools. Individuals were shunned by their families, peers, and communities. Others were refused treatment. Still more lost their jobs and could not find new employment. In China, for instance, a man was refused a job as an elementary school teacher because of his positive HIV status. Now, the nation is pushing to ban health tests as prerequisite for employment. The FDA only just (December 2015) lifted its ban on homosexual men to donate blood even if they are HIV-negative. Travel and residence bans are only just beginning to be lifted; for years, individuals were forced to disclose HIV status before moving somewhere, and their travel was restricted in many parts of the world. Australia criminalized non-HIV disclosure. Countries have had to pass legislation in order to protect people from HIV shaming and bias, making it one of few infectious disease for which there are laws protecting individuals from discrimination (other protected diseases include TB and different forms of Hepatitis). Lastly, of course, there is awful psychological distress that comes with being diagnosed with a chronic, potentially fatal disease (if left untreated), and facing shame in lieu of acceptance and care.
Public misconceptions of HIV fueled the epidemic of fear alongside social stigmas associated with the sexual nature of the disease. HIV was quickly associated exclusively with controversial behaviors – homosexuality, drug use, sex work, sex in general (which is taboo in some cultures), or infidelity. Infection by HIV was a consequence of individual irresponsibility and immoral character, and AIDS was the punishment for this disgraceful behavior. For some perspective, in the year 2015, 75 countries around the world still reported homosexuality as a crime. Because of these stigmas, many people infected with HIV did not even seek treatment for fear of receiving a scarlet letter. And, of course, inaccurate information spread more quickly than HIV itself. People developed irrational misperceptions of their own personal risk of disease despite widespread PSAs about the actual routes of transmission of the disease.
Predominant modes of transmission also dictate the type and degree of stigma in different regions. For example, HIV transmission in sub-Saharan Africa is mainly driven by heterosexual sex. As a result, stigma there is not anti-IVDU or anti-homosexuality driven; rather, it is fueled by disdain for infidelity and sex work. When high-risk groups are marginalized, the effects of infection are only amplified: rather than being able to focus on prevention and treatment, groups become isolated and continue to propagate illness.
“When 'I' is replaced by 'We', illness becomes wellness.” – Shannon Alder
Stigma limits access to disease testing, treatment, and education. In fact, the World Health Organizations has stated that fears of stigma and discrimination are the number one reason individuals refuse to get tested, disclose their HIV status, or take the very effective antiretroviral drugs that exist today.
Had the individuals first infected with HIV been heterosexual, would the HIV/AIDS stigma be the same? The delicate, controversial nature of the behaviors most frequently associated with HIV infection made it pretty much impossible for HIV ever to go without stigma. Negative societal perceptions of “unconventional” behaviors such as intravenous drug use, infidelity, and sex work amplified HIV’s stigma to scales much larger than infections that are air-, insect-, or animal-borne. Furthermore, HIV and homosexuality fueled each other’s stigma as HIV was initially named a “Gay Disease,” and gay men were collectively assumed to have AIDS.
As we have discussed many times on Infective Perspective, infectious diseases have played a role in shaping society since the beginning of human history. Many other infectious diseases carry detrimental stigmas, including tuberculosis, which is now the leading cause of death in HIV-infected individuals. What the world has not realized, however, is that infectious diseases do not have to shape society exclusively in negative ways. In 1984, Secretary Margaret Heckler of the Department of Health and Human Services announced that a vaccine for HIV would hopefully be available within 2 years. 32 years later, we do not have a vaccine, but HIV is no longer a death sentence. While there is still a long way to go (read: an HIV vaccine is the holy grail of anti-HIV efforts and will ultimately help eradicate the disease), millions of people from so many different fields (medicine, research, public health, government, social activism, and so on) have come together to fight this viral beast. Mother to child transmission is preventable, and HIV-negative individuals can take prophylactic anti-retroviral drugs to prevent infection should they have sex with HIV-positive people. HIV-positive men and women can live full lives on anti-retroviral therapy that maintains a low viral count. They can get married and have children without passing their infection on to loved ones. Despite its massive social stigma, HIV has brought out the power of the human mind and global cooperation. The journey is not without its challenges and pitfalls, or conflicts and barriers, but the fact that it is a journey that has seen such staggering progress in just three decades should be a light of hope and a spark to ignite a global resolve to conquer all devastating illnesses.
“History doesn’t repeat itself, but it does rhyme.” – Mark Twain
Through travel and technology, the world will only continue to become increasingly inter-connected, creating more opportunities for major outbreaks. While we may not always be able to predict the next pandemic, we can foil stigma from the start. Public information transparency, clear communication, and an immediate focus on treatment will steer infectious diseases onto the optimist’s path. In this scenario, the world joins forces to defeat a common enemy, pouring resources into vaccines, drugs, and care for those affected by the disease. People who are not themselves infected will feel empathy for those who are. They will understand that even though they are not behaviorally at risk of contracting this particular disease, they may just as well fall into the path of the next one. On the other hand, covert investigations and the “othering” of diseases (labeling them with specific social, cultural, or geographical communities) steer pathogens down the pessimist’s path. They fuel paranoia and cynicism, hindering progress and giving pathogens exactly what they want: the chance to spread uninterrupted. In the words of infectious disease physician William Schaffner, “It's always an uncertainty. We're always at the infectious disease roulette table.” Stigma is never productive. Care and communication are.
Sana Sohail is a third-year undergraduate at the University of Chicago studying biological sciences and art.
Unpredictability is terrifying. There is something about uncertainty and a loss of control that never fails to instill fear. Ebola and Zika have both recently forced us to confront an anxiety around infectious diseases not found in outbreaks of strep throat or the seasonal flu. Infectious diseases like SARS and cholera appear to erupt without warning, rapidly spreading and decimating populations at seemingly uncontrollable rates. Most of the time, an outbreak’s causes or mechanisms of transmission are not well understood by the greater public. Furthermore, media hype more often than not becomes the epicenter of a second epidemic: one of fear and uncertainty.
The culture of fear around infectious diseases is understandable, but a social barrier can become become a physical barrier against diagnosis and treatment through stigmatization of a disease and its victims. Survivors of Ebola report being shunned and abandoned by their families and community; those suffering from leprosy in India are quarantined in so-called “leper colonies” and targeted for the visual deformities caused by the disease; Asian populations all over the world faced discrimination in the wake the SARS epidemic of 2003. Not coincidentally, much of this stigma falls disproportionately upon impoverished and minority populations who are blamed during pandemics and epidemics. The use of labels like the “Asian flu” or, in the case of H1N1, the “Mexican disease”, serve to isolate these populations and countries, “othering” them in ways that propagate stigma and fuel xenophobia. The stigma surrounding the AIDS epidemic since the 1980s has been unparalleled in recent history until very recently. This past winter, another disease has come to surpass HIV/AIDS as a leading cause of death worldwide: tuberculosis (TB).
There is a good and bad side to this change. According to the World Health Organization (WHO), the re-emergence of TB is due both to decreasing rates of mortality from HIV/AIDS and improved data collection for tuberculosis. Tuberculosis killed roughly 1.5 million people in 2014 and researchers believe that over one-third of people with active tuberculosis are “either undiagnosed or not reported”. What is more surprising is that despite being one of the top infectious diseases in the world, the majority of tuberculosis cases are curable though the use of 4 antimicrobial drug treatments over 6 months. If this is the case, how can we understand the persistence of hundreds of thousands of undiagnosed cases? How do we address the necessary months-long adherence to a lengthy treatment program? How can we understand the social stigma and public perceptions of the disease?
A Disease and its Symptoms
For many of us, tuberculosis seems like a disease of the past, associated with the Victorian Era and its romanticized depictions of “consumption”. Caused by a bacterial called Myobacterium tuberculosis, the disease’s symptoms are variable, which makes it more difficult to diagnose and separate from other infections. Tuberculosis can affect different parts of the body, such as the lymph nodes or the bones, but it is most commonly associated with the lungs. Pulmonary tuberculosis causes chest pains, fatigue, loss of appetite and weight, fevers, and the coughing up of blood.
There are two classes of tuberculosis: latent and active. A staggering one-third of the world’s entire population is estimated to have latent tuberculosis. In this case, they have been infected by the bacteria in small enough amounts such that their immune system can stave off symptoms. Those with latent tuberculosis cannot transmit the disease to others and a small percentage (usually around 10%) actually become sick. Latent tuberculosis can become active tuberculosis in cases where the immune system becomes suppressed, or active tuberculosis can develop shortly after becoming infected with the bacteria.
Several myths and misconceptions surround the transmission of tuberculosis (which is not uncommon for contagious diseases). Tuberculosis is spread through the air, by inhaling infected droplets that contain the bacteria. This can happen when someone who is infected coughs, sneezes, or talks. However, infection only takes place after a long time of close exposure with someone who is infected, which explains why it is often found in families and friends of those who are infected. According to tbfacts.org, tuberculosis is not spread through skin contact, shared food, water, or toothbrushes, or kissing.
Notably, there is a high rate of co-infection with tuberculosis and HIV, which makes sense considering that tuberculosis becomes active when the immune system is weakened. Data from WHO reveal that people who have HIV are 20-30 times more likely to develop active tuberculosis than those who do not have HIV, and one-third of HIV deaths in 2014 were due to tuberculosis infection. Roughly 9 million people a year get tuberculosis; countries in Africa, the Middle East, and parts of Asia bear most of the burden of cases. That is not to say, however, that other nations are TB-free. The United States, for instance, sees about 10,000 cases per year; infection trends through the years are currently leveling off into a concerning plateau instead of continuing on the steady decrease to be expected in a country with potent public health infrastructure.
Pulling Out Weeds by Their Roots:
The Basis of the Stigma Around TB
For countries with high rates of tuberculosis, its prevalence can be explained by three main factors: (1) poor public infrastructure; (2) limited integrated health education or awareness of TB and its transmission; and (3) the concentration of the disease in impoverished communities without access to medical care or adequate nutrition or sanitation. TB’s prevalence can also be explained by anthropological factors, as these systemic problems compound societal perceptions of illness. Tuberculosis spreads rapidly in poor, urban communities, where people are densely packed together and sanitation levels are low. These trends led to tuberculosis’s association with poverty (a characteristic that frequently overlaps with disadvantaged and disenfranchised minorities).
Infectious diseases have a long history of being inextricably linked to qualities like socioeconomic status, ethnicity, genetics, and morals. The internalization of societal norms results in sufferers of tuberculosis understanding their illness as a reflection of undesirable qualities like a low caste, poverty, and their heritage. HIV’s close relationship with tuberculosis carries its own widespread stigma of immoral behavior, further exacerbating the poor perception of tuberculosis in some societies. Low education levels and societal beliefs also propagate stigma: misconceptions that tuberculosis is caused by a curse or smoking, or transmitted by sharing food or utensils, make it difficult to determine and understand the actual cause and spread of the disease.
It is crucial to keep in mind that the basis of this stigma is fear of infection. To deal with this fear, infected individuals are isolated and ostracized from their communities and daily life in order to create a comforting sense of distance. In Ghana, those with active tuberculosis “cannot work in public spaces or attend community events”, while in some parts of India, a diagnosis of tuberculosis damages marriage prospects and can lead to the individual being abandoned by their family.
A long case-study conducted last year in Zambia supplied interview excerpts about experienced stigma:
“The nephew of my neighbour got the diagnosis TB at the clinic, this means they will do a household screening, but the family refused. The aunt said: “no one can have TB, because I believe in God”, even though the nephew is smear-positive. Instead of testing, they do nothing. The nephew now has to sleep alone, eat alone and no one talks to him. He is taking treatment on his own (TB patient during FGD).”
The Sequels to Stigma
In the excerpt above, the nephew was not only ostracized for his illness, but he also did not get the necessary testing and screening due to social stigma. For many people living in communities like these, the costs of revealing their diagnosis or going for treatment does not outweigh the costs of losing their jobs, their families, access to services, and their social standing. A damaging result of stigma is decreased adherence to preventive measures, low detection rates as people refuse testing, and reduced treatment compliance—all of this culminates in not only a threat to the life of the sick individual as the disease progresses and worsens, but an increased risk of of transmission to the rest of the community.
In order to avoid isolation and abandonment, community and family members may hide their diagnosis and attribute their symptoms to other causes. The effect of this stigma is so strong that some families do not disclose a member’s death to tuberculosis, fearing judgment and social repercussions despite the essentiality of such information for data collection, infection surveillance, and targeted tuberculosis screening. Patients may refuse treatment due to not wanting to be seen by the hospital or treatment facility, which they would have to visit for an extensive treatment regimen. Even for patients who do receive treatment and recover, they may return home to a community that views them with fear over their (albeit no longer existent) contagiousness, leaving a constant weight of stigma on the survivor.
Women and children were found to be particularly vulnerable to this stigma. WHO has acknowledged that childhood tuberculosis is under-researched and is only just beginning to be monitored more closely while women in many of these poor communities are in already-precarious economic positions with reduced access to medical care and education.
An Ethical Problem in Global Health
The stigma around tuberculosis could be a strong factor in its high mortality rates and prevalence in certain countries. Fear over being seen as someone with TB makes it difficult for people to disclose their condition or seek and continue treatment. This causes tuberculosis cases to go undetected and untreated, resulting in much higher chances that the microbe will spread throughout the community. The question remains, however: how can stigma be appropriately and compassionately dealt with?
The use of quarantine and isolation as a tactic for preventing the spread of infectious diseases is an age-old precaution, but it sometimes comes under fire socially for its negative effects on people and targeted populations. Even for those of us living in the States who think tuberculosis is behind us, the discussion of stigma and the ethics of isolation for this disease is still relevant. Over the past couple of decades, drug-resistant forms of tuberculosis have appeared, including strains that are proving to be incredibly difficult – if not impossible – to cure with even the most powerful anti-TB drugs. MDR-TB (multi-drug-resistant tuberculosis) prevalence has increased globally as a result of a lack of or incomplete adherence to normal tuberculosis treatment. The even more resistant form of tuberculosis, XDR-TB (Extremely Drug Resistant Tuberculosis), has also begun to emerge.
Clearly, tuberculosis is not a thing of the past. As different forms of the disease continue to evolve and spread, the myths and misconceptions surrounding its cause and transmission need to be dispelled in order to create a safer, encouraging environment for patients. We need to remain conscious of the way we socially approach and consider sickness, particularly when it does not seem to affect us. With concerns over the refugee crisis dominating the news, medical and political conversations over the risk of infectious diseases and their management are sure to take center stage, continuing this important discussion of disease, stigma, and treatment.
To learn more about a current campaign working to combat the stigma around Tb, visit http://www.unmaskstigma.org/
Francesca Tomasi received her B.A. from the University of Chicago and currently does microbiology research.
A Historical Plague
On Infective Perspective, you have read about several “ancient” diseases – infections that date back at least to the beginning of human history. Some that immediately come to mind for many are leprosy, tuberculosis, cholera, and
Like malaria, Guinea worm disease is caused by a parasite. Instead of the mosquito-borne Plasmodium that causes malaria, however, Guinea worm disease is caused by an aquatic flea-borne roundworm called Dracunculus medinensis, which means “Little dragon from Medina.” Historically, D. medinensis was present in virtually any untreated, stagnant body of water in Africa, Asia, and the Middle East. Archaeologists have detected it in calcified Egyptian mummies. Ancient texts by the Greek writer Agatharchides depict an affliction of little serpents in individuals living along the Red Sea, in present-day Sudan. Nonetheless, D. medinensis’s namesake is the city of Medina, in present-day Saudi Arabia, where cases of the infection were higher than average. The more colloquial name Guinea worm disease comes from a similar, unusually high incidence of illness noted along the Guinea cost in West Africa.
It Takes the World…
Guinea worm disease causes frightening symptoms. Individuals become infected when they drink contaminated water, which is home to tiny fleas that carry D. medinensis larvae. Once someone has ingested infected water, the worm larvae are released in the stomach and cross through the digestive tract into the body cavity. Female larvae grow for the next 10-14 months into full-size adults, which can be up to 3 feet long (and, as the CDC page on Guinea worm points out, the width of a cooked spaghetti noodle). Patients have no symptoms until this point.
Once the female is ready to emerge for procreation, it generates a small blister on its unsuspecting human host’s body, usually on the legs or feet. This blister causes a painful burning sensation and ultimately bursts 1-3 days after appearing. When infected individuals develop blistering pain, they tend to immerse themselves in water to relieve the pain. However, this allows the worm to emerge and release millions of little larvae into the water, starting the infection cycle all over again for anyone who consumes that water.
You may be familiar with the Rod of Asclepius (or Staff of Asclepius). It dates back to the Ancient Greek god Aesculapius, deity of healing. In mythology, he always wielded a large stick entwined by a snake. Today, this same sign is the symbol of all medicine. One historical interpretation of this specific symbol for ancient medicine looks to the traditional treatment regimen for Guinea worm disease: instead of letting the worm release its larvae into cool water, healers would slowly pull the worm out of a person’s blister. This process was very slow and took days to weeks, as only a few centimeters could be pulled out every day without breaking the worm. As the worm was removed, it was wound around a stick to keep it whole and isolated. Modern treatment of Guinea worm disease is essentially the same, except the stick has been replaced with sterile gauze.
No other treatment for Guinea worm disease exists; today, prevention is key. Preventive efforts against the disease revolve around constantly decontaminating water. Water can be filtered with cloths or pipe filters, and commercial larvicides are often used to kill the water fleas that ingest Guinea worm larvae. Individuals infected with the parasite are prevented from entering bodies of water used for drinking or bathing in order to avoid releasing millions of larvae.
In 1980, the UN declared a global campaign to be headed by the CDC to eradicate Guinea worm disease. A sad truth to certain infectious diseases, however, is neglect – hence the title Neglected Tropical Disease to describe microbial diseases causing substantial illness in the poorest areas of the world. A lack of international social and economic incentive to address these infections has allowed them to flourish on the backburner of public health campaigns. Political and societal barriers in Guinea worm-endemic nations were another hurdle to eradication, as nations plagued with the parasite lacked the political and health infrastructure required for such an immersive program. Nonetheless, finally, by 1986 the World Health Assembly resolved to eradicate Guinea worm disease. By that year, an estimated 3.5 million people in 20 different countries were infected with D. medinensis every year. The World Health Assembly’s definition of eradication would be the absence of Guinea worm disease – and thus, the disruption of transmission – for three or more years.
…And an Eradicable Disease
Not every disease can be successfully (permanently) eradicated. For instance we have recently seen flare-ups of polio, once thought to be eliminated from the human race. Other infections, such as the flu, will likely never be eradicated due to the existence of animal reservoirs that harbor these viruses. Guinea worm disease, however, like smallpox, fits the bill for an eradicable disease. The parasite’s life cycle relies exclusively on human infection: as a result, once the last human case occurs, there is no chance for the disease to re-emerge. The infection itself, like smallpox, has very specific symptoms, making it easy to recognize and address immediately to prevent additional cases from water contamination. Fortunately, unlike with smallpox, Guinea worm disease does not spread like wildfire from human to human. As a result, vaccination campaigns and strict quarantines are not part of the Guinea worm eradication program, which eliminates a large source of interference (during smallpox eradication, it was extremely difficult to get full compliance in every affected country for both vaccination and quarantine).
The World Health Assembly passed the resolution to eradicate Guinea worm disease in 1986. In 2015, only 22 cases in 2 countries were reported of the infection. As you can see, enormous progress has been made in the last thirty years. As of January 2015, 198 countries, territories, and areas have been certified Guinea worm transmission-free. The remaining 8 countries in the world yet to be certified are Angola, Democratic Republic of the Congo, Kenya, Sudan, Chad, Ethiopia, Mali, and South Sudan. In 2015, 9 of the 22 total cases were reported in Chad. The rest were clustered between Ethiopia, Mali, and South Sudan.
The fundamental pillars of public health practice are responsible for the gloriously imminent eradication of Guinea worm. Surveillance, case containment, and the basic preventive interventions described above have been incredibly powerful against this neglected disease. Guinea worm, a main character in human history, is about to remain forever in the books. The Rod of Asclepius will not only be a symbol of medicine and healing; soon, it will represent the power of public health and the successful eradication of an ancient plague.