As a tropical country with abundant sunshine, one would think Indonesia would not have any problems with Mycobacterium tuberculosis, the bacteria that causes tuberculosis (TB), as sunshine is supposed to kill it.

However, according to a recent global report by the World Health Organization (WHO), Indonesia ranks third for the highest number of TB patients in the world after India and China.

TB is an airborne disease, and, therefore, spreads very easily. When a TB sufferer coughs, sneezes or spits, they propel the bacteria into the air, and through this medium it can infect others in the area. On the other hand, this disease is also very easy to cure with proper treatment.

“Patients just need to take the medication exactly as prescribed,” Erlina Burhan, a pulmonologist and TB expert from Persahabatan Hospital, said during a recent workshop on the disease.

However, in some cases, receiving proper treatment might not be enough, as cases of TB can have various drug-resistant levels. Drug-resistant types of TB range from mono resistant to multidrug resistant (MDR) to extensively drug resistant and totally drug resistant.

The most dangerous type of TB is MDR TB, because this means the bacteria are resistant to the two main drugs commonly used in treatment.

Erlina said in Indonesia there were 32,000 sufferers of MDR TB, which has a grim mortality rate of 50 percent. She added that this high rate was due to the fact that many TB patients in Indonesia did not take their initial medication properly.

“Most of them do not complete the drug therapy because they get bored taking medication for the long duration of the treatment. In addition, they are stigmatized by society, so they do not have the motivation to complete the treatment,” Erlina said.

On the other hand, a lot of doctors in Indonesia are also to blame, according to Erlina, because they failed to educate patients about the potential dangers of not completing TB treatment.

“The bacteria has a motto and it says ‘what doesn’t kill you makes you stronger’. Doctors need to educate their patients about this,” Erlina said. 

Paran Saramita, a MDR TB survivor, knows firsthand what it is like to lack awareness about drug-resistant TB. She was diagnosed with TB when she was 26, a period when most people are at their most productive.

It was 2008 and Paran would travel from her home in Cijantung, East Jakarta, to her office in Cikini, Central Jakarta, on the commuter line train. During this time, the trains were far less hygienic than today, as people were still not unaware of the need to wear a mask or cover their mouth when they coughed or sneezed.

“In a train full of people it is almost impossible to avoid someone coughing or sneezing. It happens in front of your face. So, maybe at that time, I inhaled the contaminated air. Plus, I did not get enough rest nor eat healthy food, which weakened my immune system,” Paran said.

At first, she thought her asthma had returned. So, she went to the community health center (Puskesmas) to get medicine, but after the medicine ran out her condition worsened, this time with coughing, night sweats and a loss of appetite.

Paran then choose to visit a doctor at a private clinic. The doctor said it was nothing serious and prescribed her drugs without providing an explanation.

“The doctor just said don’t forget to take the medication every day, once you skip it then you need to start all over again. So, I thought I just had a mild lung infection,” she said.

Paran did not know she had TB and what she thought was going to be a temporary treatment lasted two years without her symptoms disappearing. Eventually, the doctor told her that she could stop taking the medication following a brief x-ray session.

A year after not taking medication, Paran fell ill again. The same doctor then doubled the dosage but her condition continued to worsen. It became so bad that one day she coughed up blood.

Paran’s neighbors then suggested she return to the Puskesmas to get a second opinion. The doctor there saw an indication she had MDR TB and referred her to Persahabatan Hospital to undergo an expert examination.

While waiting for the results, Paran tried to convince herself that she did not have TB, let alone MDR TB, but reality spoke otherwise. She was overcome with sadness, resentment and a sense of helplessness.

The treatment for MDR TB is harder than for ordinary TB.

MDR TB patients need to take far more drugs. Some patients, according to Erlina, can even take up to 32 tablets at once every single day for 20 months. As for Paran, she took 15 tablets at a time.

The side effects of taking so much medication are also harsh. For Paran, she could vomit for six hours, causing her to lose a significant amount of weight, and experience difficulties sleeping and even hallucinations.

After 16 months of treatment, Paran even had to be hospitalized because her health had deteriorated so severely.

During her time in the hospital, she met members of Pejuang Tangguh (PETA), a community for MDR TB patients and survivors, leading her to join to get the support network she so desperately needed.

A support network is very important for MDR TB patients like Paran, as they often face their battles alone and experience discrimination because people think they carry a deadly bacteria inside their lungs.

With persistence and support from the community, Paran was finally able to defeat the disease on April 25, 2014, 20 months after taking her first medication for MDR TB. On this date, she received a cured certificate from her doctor.

“For others, this certificate is just a piece of paper, but for me and every MDR TB patient, it is a testament to what kind of fight we’ve been through,” Paran said.

However, Paran’s personal struggle has not yet ended. Even after being declared cured for five years, she still has difficulties freeing herself from her own stigma.

“If someone coughs in my house, I immediately think that I have infected them. I feel so insecure all the time and at least 80 percent of my friends in PETA experience the same thing,” she said.

Indonesian MDR TB survivors like Paran often take counseling provided by the government to restore their self-confidence. The counseling service is available for three months before the end of treatment.

“The long, tiring and harsh treatment affects you, not only physically, but also psychologically,” Paran said. (hdt)

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