Fighting the Negative Stigma Associated with Tuberculosis
Many still have poor awareness of the causes, transmission and prevention of tuberculosis (TB). As a result, negative stigma emerges and hinders TB mitigation efforts in Indonesia.
Despite being a major infectious disease in Indonesia, tuberculosis (TB) remains one of the most poorly-understood diseases in the country. The lack of public knowledge on TB is perfectly captured in the result of a Kompas poll on March 11-13.
People generally understand TB as an infectious disease that attacks the respiratory tract. This is reflected in respondents’ first response upon hearing the word TB. Most of the public identifies TB as an infectious disease (26.8 percent), lung disease (25 percent) and cough or flu-related disease (24.4 percent).
It is true that TB mostly invades the lungs as the infection begins in the respiratory tract. However, TB can also invades other bodily organs, such as kidneys, intestines and bones. If it infects skin cells, it may lead to chronic wounds.
People generally understand TB as an infectious disease that attacks the respiratory tract.
People with TB commonly experience breathing difficulty, high fever, night sweats, reduced appetite and coughing with blood. If neglected, their condition may worsen and lead to death.
The World Health Organization (WHO) estimated that Indonesia had 842,000 TB cases in 2018. Of this amount, 39 percent remained undetected and untreated, resulting in high level of transmission.
The 2018 Indonesia Health Profile cited that the country had 566,623 TB cases in 2018, an increase from 446,732 cases in 2017.
West Java, Central Java and East Java reported the highest numbers of cases, amounting to 44 percent of TB cases nationwide. Data from TB Indonesia shows that the disease’s fatality rate was 107,000 persons in 2017, or an average of 40 in 100,000. In 2018, the WHO cited that TB’s case fatality rate (CFR) in Indonesia was 12 percent.
This figure is higher than those of other infectious diseases, such as dengue fever, AIDS and even COVID-19. In 2017, the fatality rates of dengue fever and AIDS in Indonesia were 0.72 percent and 1.08 percent, respectively.
Meanwhile, according to community initiative Kawal Covid-19, as of 23 March 2020 on 7 a.m., Indonesia had 514 Covid-19 cases with a fatality rate of 48 persons or around 9.3 percent.
At least one in ten Kompas poll respondents is aware of the dangers of TB. Their first responses upon hearing TB are that it is a dangerous or deadly disease.
The high fatality rate of TB compared to other diseases is caused by the irregularities of medication among people with TB. Furthermore, delays in treatment are caused by incomprehensive TB detection. Among the obstacles is the difficulties of taking specimens from persons suspected to have TB.
This is acknowledged by medical doctor and KNCV Indonesia Foundation executive director Jhon Sugiarto. Along with a team of other professionals, he created an application named SITRUST that takes and delivers specimens of persons suspected to have TB to laboratories. Through the application, persons suspected to have TB, healthcare facilities and laboratories can track the progress of the specimen test.
Lack of knowledge
Despite the relatively high fatality rate, TB is in fact treatable and preventable. This must start with people’s awareness to check themselves if they believe that they are experiencing TB symptoms.
Among these symptoms are coughing for more than three weeks, coughing up blood, sustained fever, reduced appetite, weight loss and drowsiness.
TB is caused by the Mycobacterium tuberculosis bacteria, which spread on saliva droplets that come out when a person with TB talks, coughs or sneezes. Droplets of sputum can survive in the air for a few hours in dark and dank spaces.
Only 13.5 percent of respondents know that TB is caused by bacterial infection.
If these droplets are inhaled by another person, this person can be infected with TB bacteria. Not all people with TB bacteria will catch the disease. People with good immune system may be protected. Only 10 percent of people who have TB bacteria in their body will suffer from the disease.
Furthermore, transmission also depends on the exposure level of sputum droplets. Rooms with good ventilation system may reduce the amount of droplets in the air. The bacteria in the droplets will also die upon exposure to direct sunlight.
Unfortunately, such basic knowledge on TB remains lacking among many people. A majority of poll respondents (73 percent) say that TB is caused by lifestyle, air pollution, virus, smoking habit, unhealthy meals or beverages, stress or that it is hereditary. Only 13.5 percent of respondents know that TB is caused by bacterial infection.
Public understanding on the disease’s transmission also varies. Some 12.8 percent say that TB is transmitted through physical contacts.
The rest say that TB is transmitted through sharing utensils, direct face-to-face contacts and being in the same room as people with TB. However, a majority of respondents (42 percent) understand that the disease is transmitted through droplets.
Being near a person with TB for a prolonged period may expose you to TB bacteria. However, this does not necessarily mean that physical contacts will immediately lead to infection. TB cannot be transmitted through handshakes, sharing meals, touching the same objects or sharing things.
Transmission will not occur if people. Especially those with TB, adhere to proper coughing etiquette. Those suffering from coughs are suggested to wear masks to prevent droplet spread. For healthy people, a strong immune system will prevent TB infection.
Public stigma
Despite not fully understanding TB, people are concerned about its transmission. Because of this, many refuse to do activities together with TB sufferers. Some 40.9 percent of respondents said that they would not be willing to do activities in the same space as people with TB.
Lack of public understanding and knowledge is an obstacle in eliminating TB in Indonesia. Misunderstandings on TB develop into worries that lead to negative stigmas for those with TB.
Some poll respondents still believe that TB is a curse, hereditary or only spreads among the poor. This is despite anyone can be exposed to TB bacteria. Indeed, transmission may be easier in densely-populated slum areas.
In cases in other countries, TB is often linked to HIV, poverty, alcohol and narcotics addiction, incarceration and refugee status. There is also a belief that women cause TB infection, which results to them being blamed.
Almost every person with TB receives negative stigma in public. Furthermore, these negative stigmas have led to firing, social exclusion and even rejection from family members.
Furthermore, psychologically, these stigmas often lead to feelings of discouragement and shame among sufferers. Many are reluctant to seek medication as they are afraid that people will learn about their disease. This is despite delays in treatment can worsen the health condition. This, then, leads to some confirming that TB is deadly.
Nurma, 37; Dewi, 37; and Ully, 33, have experienced negative stigmas due to having TB. Nurma, from Teupin Pikat village in Nurussalam district, East Aceh regency, was accused of suffering from a curse when she had TB in 2009. This was due to minimal references available about the disease that Nurma had. Fortunately, there was Rizayana, 31, from the TB and Leprosy Care Community (KPTK), who took care of her.
Meanwhile, Dewi suffered from exclusion and was kicked out of her home by the family of her ex-husband. Nowadays, she has recovered and founded the Keep Fighting Foundation to care for other people with TB in West Java.
Ully had a different experience. The founder of Persistent Fighters Foundation (PETA) was subjected to discrimination during a visit to a healthcare facility. There, nurses kept away from her despite her having fully recovered from TB at the time.
Preventive efforts
TB mitigation involves many sectors, including technical, health and social issues. The poll results show that many lack the proper knowledge on the causes, transmission and prevention of TB.
Increasing public health campaign on TB must be seriously considered. This is because 13.2 percent of respondents do not understand the causes of TB and 13.4 percent of respondents do not know how it is transmitted.
This is necessary to raise people’s awareness on the symptoms of TB so that people experiencing these symptoms are willing to undergo a medical check. This is also good to counter persistent negative stigmas and myths.
13.2 percent of respondents do not understand the causes of TB and 13.4 percent of respondents do not know how it is transmitted.
Furthermore, people with TB also need special care to support their recovery process. They need continuous moral support to complete their medication process. Social communities and agencies must be supported as they are directly involved in supporting and monitoring people with TB.
For the general populace, getting used to a clean and healthy lifestyle may help prevent TB. BCG vaccination and INH prophylaxis for children under five are also necessary to prevent TB.
(KOMPAS R&D)