TB still major health concern in Indonesia

“It started when I just graduated from high school in 2005. I worked in a factory in Bogor, West Java, and befriended someone who told me that he was suffering from tuberculosis. At that time I wasn’t aware that it was highly contagious,” Yulinda said.

Yulinda spent almost every day talking to her friend, trying to encourage him to toughen up and face his illness, not realizing that she has risked her health by having close contact without adequate protection.

In 2008 Yulinda started to develop some symptoms including a persistent cough and high fever, and she even vomited blood.

She went to her health clinic and the doctor diagnosed her with tuberculosis and put her on a course of treatment.

“After three months I stopped taking medicines, I stopped coughing. I felt much better and I gained the weight I lost when I was sick. But that was when the real tragedy started,” Yulinda said.

In 2010 the illness came back, and the symptoms got worse.

Yulinda had developed multiple drug-resistant tuberculosis (MDR-TB), a strain of the disease that can develop if the initial treatment course is not observed for the full duration of six to eight months.

Yulinda was quarantined for three months while waiting for the doctors to formulate the best treatment for her. Eventually they referred her to Persahabatan Hospital in North Jakarta.

“So that was it. I had to quit college and my job, moved away from my family so I would not infect them and stayed alone in a rented room near the hospital,” she said.

Every day for three years she wore a surgical mask and went to the hospital for her treatment, taking 15 pills and enduring severe side effects including nausea and skin rashes.

Her only consolation was developing friendships with other MDR-TB patients in the hospital.

“The treatment was unbearable sometimes. I was once kicked out of my rented room by the landlady when she found out I had tuberculosis. My fellow patients started to die one by one, so of course it was hard,” Yulinda said.

Yulinda was lucky because the drugs and the treatment were paid for by donors and the hospital.

And after a long struggle she was declared free of tuberculosis in February last year.

After contacting some of the other former patients that she met during her treatment, Yulinda formed a group called Peta or Pejuang Tanggung (Tough Fighters).

The group motivates tuberculosis patients to stick to their treatment by giving them encouragement and support.

Massive challenge

It is estimated some 7,000 Indonesians are suffering from MDR-TB.

Tjandra Yoga Aditama, director general of disease control and environmental health at the Health Ministry, said that only 1,000 MDR-TB patients were undergoing treatment currently, and that all medical expenses were paid by the state.

While Indonesia has been lauded internationally for its success in diagnosing and treating tuberculosis patients, the disease remains a serious challenge for the country.

The World Health Organization estimated there are 456,000 new tuberculosis cases in Indonesia annually, meaning that it shoulders the fourth largest new diagnosis-burden in the world after India, China and South Africa.

Indonesia is also home to the seventh largest number of sufferers of MDR-TB.

A patient who develops MDR-TB must undergo a treatment for at least 24 months. The drugs alone cost $4,000.

MDR-TB can develop into extensive drug-resistant tberculosis, or XDR-TB, for which the survival rate is only 15 percent.

The condition can also develop into totally drug-resistant TB (TDR-TB) where the patient does not respond to any drug treatments at all.

Tjandra said currently there are 20 cases of XDR-TB in Indonesia; four have been cured while the rest are still undergoing intensive treatment.

“Tuberculosis is still a serious problem not only for Indonesia, but for the world,” Tjandra said.

The conventional diagnosis tool used to detect the new cases of tuberculosis has been used for more than 100 years and the newest drug currently available is more than 40 years old, Tjandra said.

“We need more updated drugs, the new drugs are underway but they are not yet available on the market,” he said.

The tuberculosis vaccine, Bacillus Calmette-Guerin vaccine (BCG) which is included in Indonesia’s national routine immunization program, is highly unreliable — it has been more than 90 years since the vaccine was invented.

“It has been proven that the BCG vaccine does not have any significant impact in slowing down the tuberculosis epidemic,” Tjandra said.

Double burden

Ibnu Rizal has a slightly different story from Yulinda. He does not have MDR-TB but he is HIV positive and has been diagnosed with tuberculosis, the most common infection for those with the immune deficiency virus.

Rizal, 28, is an inmate at Salemba Penitentiary in Central Jakarta.

He has been in prison for three years for drug abuse and will be released in the near future.

Instead of feeling relieved and happy, Rizal is feeling weary because he will have to return to his family and tell his wife that he has tuberculosis and HIV and may possibly have infected her.

“I just don’t know how I should tell her. This will come as a great shock for her,” he said.

Rizal found out about his HIV status in 2010 but did not start antiretroviral (ARV) therapy until 2013 because he was afraid of not being able to keep up with his treatment.

An interrupted treatment might have resulted in him developing a resistance and needing to switch to the second line of the drugs, which have more side effects.

Rizal was forced to start his treatment when he later found out he no longer responded to the first line of ARV. On top of that he developed tuberculosis after staying in the damp and overcrowded prison.

“Overcrowding in prison is a serious problem that hampers our efforts to manage tuberculosis transmission,” Tjandra said.

The Health Ministry reported that tuberculosis was the most common cause of death in prisons.

Dyah Ayu Ertikawati, the director for tuberculosis control at the Health Ministry, said some 30 percent of Indonesian prisoners have been affected by the disease because most inmates are living in a damp cell, cramped together in a confined space.

Dyah said Indonesia has started a more progressive approach by introducing the tuberculosis control program in 200 out of 420 prisons in the country.

The program focuses on fixing ventilation systems in prisons for better air circulation and setting up booths to collect spit samples for testing.

Tjandra said the Health Ministry has been working closely with the penitentiaries directorate to control tuberculosis from spreading.

“Right now the program is focused on managing the co-infection between tuberculosis and HIV among the inmates.

I am exploring the possibility of solving the poor sanitation problem as well,” he said.

Better access to treatment

“If we want to ensure the patient’s adherence we have to make sure the access to medication is easy and nearby, that’s what we have been trying to achieve,” Tjandra said.

He said patients’ low adherence was the main reason for tuberculosis’s enduring prevalence. He said the Ministry has been developing a system where a patient can access the treatment and the medication at the nearest health clinic instead of coming all the way to a satellite hospital.

Indonesia has also purchased 23 units of Gen-Expert, the most cutting-edge medical device that is able to rapidly diagnose tuberculosis. Indonesia will purchase 49 more devices by the end of 2014.

“For now we only use Gen-Expert to diagnose MDR-TB and the diagnosis is free of charge,” Tjandra said.

Millions of people worldwide have tuberculosis but are yet to be diagnosed. Poor diagnosis rates are often exacerbated by poor socio-economic conditions and stigma.

“Drugs alone cannot beat tuberculosis in the community, the disease is a condition strongly influenced by low nutrition, poverty, social stigma, environment, rapid urbanization, and large population displacement in many countries. And these are factors that result in so many unreported cases,” Dr Poonam Khetrapal Singh, WHO Regional Director for Southeast Asia, said.

“We have made substantial progress in tuberculosis, but unless we address the social, economic and behavioral determinants that impact the disease, our fight will not be over,” she said.

Indonesia is aiming to eradicate tuberculosis by 2030 but it is generally admitted the target is a daunting task. For a country to be able to declare itself rid of tuberculosis, the prevalence of active infections in the general population must not exceed 10 cases per 100,000 people.

The current rate in Indonesia is 185 per 100,000 people and in prisons it is much higher. Indonesia also aims to reduce the mortality rate from the disease by 95 percent by 2035.

Source: Jakarta Globe