Every morning Aran's (name changed) father drives him from his home, to the government TB hospital in Bangkok, the capital of Thailand, (which takes one hour to reach) for his multidrug-resistant tuberculosis (MDR-TB) oral medication.
Then in the evening Aral takes the injection nearer home at a private clinic which is covered through the Thai government's universal health scheme or health insurance under which the government pays for the health insurance of all of its citizens, and so Aral does not have to pay out of his pocket at this private clinic.
17 years old Aran is suffering from pulmonary MDR-TB and is also HIV positive. He became very sick in 2011. Although normally schools in Thailand do not screen for TB, but because Aral was showing many TB related symptoms, they referred him to a private hospital. There he was diagnosed with drug susceptible TB and was put on TB treatment in July 2011.
Despite taking his medicines regularly, there was no improvement in his condition at the end of his 6 months' treatment. So the hospital tested him again for drug sensitivity and this time he was diagnosed with MDR TB.
The private clinic then referred him to the government TB bureau clinic which has better facilities and specialized doctors, nurses and other healthcare providers who deal with MDR-TB on a daily basis.
In January 2012, Aral was put on a 18-20 months duration MDR-TB treatment therapy which will continue till June 2013. He receives his Anti-Retroviral treatment (ART) from another hospital.
Thailand, with a population of 70 million, is one of the high burden countries for TB as well as for HIV. According to the WHO Global Tuberculosis Report 2012, prevalence of TB was 110000 and incidence was 86000 in Thailand in 2011.
Also, there were 15% HIV positive TB patients, out of whom 59% were on ART. In 2011, 4939 cases were tested for MDR TB, 510 were laboratory confirmed, and 123 were started on treatment.
I met Aran and his mother (both were wearing masks) on a bright sunny morning in November 2012 at the Tuberculosis Cluster, Bureau of AIDS – TB – STIs, Bangkok, where he comes daily for his dose of oral medicines for MDR-TB.
He has been through very bad times, having had to drop off from school in July 2011 when he began his TB treatment, and then, adding fuel to fire, six months later he was diagnosed with MDR-TB.
He was very depressed and cried inconsolably when he first came to know of this. Why had this to happen to me-he wondered in despair? The adverse side effects of MDR-TB medication—dizziness and vomiting-- added to his problems.
But his parents' support and love helped him tide over the worst of times. He now feels a LOT better with the treatment and care he has been receiving since January 2012 onwards. I found him to be quite cheerful and he seemed to have overcome most of his trauma by then.
I could see his eyes brimming with renewed hope and aspirations, as he looked forward to resuming his studies at the University from June 2013 after finishing the course of treatment.
Luckily, no one else, beside him, has TB in his family consisting of five members. However every three months they are all regularly investigated and followed up with a chest X-ray.
Yet the profound stigma associated with the disease still remains. Dr Sirinapha Jittimanee, Public Health Officer at the Tuberculosis Bureau, Ministry of Public Health, Thailand, told Citizen News Service - CNS that Aran is covered under health insurance and can receive free MDR-TB care from another hospital which is nearer to his house and covered through his health insurance.
But due to the high stigma related to MDR-TB, his parents prefer to bring him to the TB Bureau hospital—far away from his home-- daily to get his oral medication and care.
Although Aran and his mother refused to be photographed, they wanted to share his experience in the hope that it might help other patients across the world including India.
Of course, it is crucial to eradicate TB altogether from the face of the earth, but if one does contract it, one has to fight it out as long as it is there in the body and not give up. As we parted company, Aran's mother said that she wished there was no more MDR-TB (or for that matter any type of TB) in the world.
Let us all join forces to let this prayer come true.
Shobha Shukla – CNS (The author is the Managing Editor of Citizen News Service (CNS). She is currently interviewing people dealing with MDR-TB in Thailand and other stakeholders, with kind support from the Lilly MDR TB Partnership and Global Alliance for TB Drug Development (TB Alliance).
She is a J2J Fellow of National Press Foundation (NPF) USA. She received her editing training in Singapore, has worked earlier with State Planning Institute, UP and taught physics at India's prestigious Loreto Convent.
She also authored a book on childhood TB (2012), co-authored a book (translated in three languages) "Voices from the field on childhood pneumonia" and a report on Hepatitis C and HIV treatment access issues in 2011. Email: [email protected], website: http://www.citizen-news.org)