Timor Tuberculosis Tales

In October 2012 I travelled to East Timor to volunteer at Bairo Pite Clinic (BPC) in Dili, for three weeks.  BPC provides free health care to those in need, and is the most visited health clinic in East Timor, with over 530 people attending the clinic per day (with a single doctor reviewing patients, coordinating clinic and overseeing the various programs).  People travel from all corners of the nation to seek medical attention here, and a number of primary health care programs are coordinated from the clinic, including a very busy TB unit.  This is a very brief synopsis of my experience from a TB program perspective only.

It took me an hour to travel from Darwin to Dili, but I could have travelled to another planet, the differences were so vast.  As I sat outside the clinic on my first morning, amongst the waiting crowds I observed an emaciated man sitting against the wall with his knees tucked under his chin, struggling to breathe, his whole rib cage recessing with every inspiration.  I was tempted to diagnose him on-sight with all-consuming pulmonary tuberculosis.  I then sat in on the morning clinic, and in my first two hours, witnessed seven people (including this man) diagnosed with probable tuberculosis.

The TB section of the clinic consists of two ward rooms with eight and ten hospital beds, and a TB laboratory next to them, where Ziehl-Neelsen staining of sputum specimens is undertaken daily, on specimens ordered for both inpatients and outpatients.

Most sputum specimens are not cultured (specimens have to be sent outside East Timor for culturing, and this is only done after treatment failure with persisting smear positivity).  There is also a GeneXpert machine in use, for PCR and Rifampicin resistance testing.  This is reserved for smear positive specimens, or smear negative specimens where TB confirmation would be useful, eg sputum with haemoptysis; or cases of TB treatment failure.

CXR is only ordered for those in which clinical confirmation would be useful, and patients travel to the radiology department at Guido Valadares Nacional Hospital, approximately 2kms away, if this is required.

The clinic have a coordinated DOTS program, run by competent local health staff with specific training, who provide treatment to an average of 103 new cases per month, including an average of 5.4 children under the age of 5 years old, commencing on DOTS each month.

There is also a TB sanatorium at a fishing village 20 minutes’ drive west of Dili, where I observed approximately 20 people at any one time, living together in a pretty setting behind locked gates, awaiting sputum clearance.

WHO estimates the TB prevalence rate in 2011 for East Timor to be 701 per 100,000 (http://www.who.int/countries/tls/en/).  Other health, economic and education statistics include 54% of infants with chronic malnutrition – the world’s third highest child malnutrition rate.  BPC have a malnutrition program including inpatient area for severely malnourished infants, and a World Food Program distribution centre providing fortified cereal to malnourished outpatients.  More than 40% of Timorese live in absolute poverty (less than US$1.25 per day).  80% are unemployed.  Many of those employed are in the informal labour market, eg fishing, weaving, even selling stones along the foreshore, and therefore not protected by the new National Labour Code which has implemented a minimum wage (US$115/month) as well as other employee rights.  All statistics I could find online or in discussion with local staff reflect a population surviving in extreme poverty, which was certainly my observation during my time in Dili.

In my time at BPC, the TB beds were usually full with constantly rotating admissions and discharges of people with either confirmed or suspected tuberculosis.  TB cases I encountered included: a 56yo man with ten years of weight loss and cough; a young man with overwhelming disseminated TB; a 27yo woman reporting chronic cough who weighed 24kg; a number of cases of TB uveitis; a 60yo woman with total right pleural effusion; an 11yo girl with left hemiparesis, disconjugate gaze and drooping left eyelid following TB meningitis with TB otitis and optical nerve involvement.

The most interesting clinical case for me, due to the diagnostic delay and resulting debilitation, was the presentation of a 32yo woman (alias “Maria”), from a village in Lospalos District, to the east of East Timor, and her 11yo daughter (alias “Julia”).  Maria reported an eleven year history of extensive, itching lesions over her face.  She had a scar on her right clavicle suggestive of previous Scrofuloderma.  She was well nourished at 48kg, but reported some weight loss and night sweats.  She reported no current or previous respiratory symptoms.  Some right sided sub-maxillary lymphadenopathy was palpable.

Julia presented to the clinic with her mother wearing dark sunglasses, with a chronic, purulent discharge oozing from both eyes for three years.  Upon removal of her sunglasses, she had signs of photophobia, and was unable to open her eyes more than narrowly and briefly.  She was well nourished at 30kg, and reported no weight loss, fevers, night sweats or cough.  She also had palpable right sided sub-maxillary lymphadenopathy.

The doctor immediately diagnosed Maria on clinical grounds, with Lupus Vulgaris (TB of the skin caused by haematological spread from a primary source elsewhere, occurring in people with moderate immunity such that healing occurs in one area, whilst the lesions extend in another).  She also had probable previous Scrofuloderma (TB of the skin caused by contiguous spread from an underlying focus – in this case, a probable supra-clavicular lymphadenopathy).  Julia was also diagnosed immediately, with probable TB conjunctivitis, contracted by direct contact with the lesions on her mother’s face over many years.

Sputums were not taken because neither had respiratory symptoms.  Point of Care HIV and Malaria tests were negative.  Both were commenced on standard TB treatment immediately, and admitted for observation.  Within 48 hours Maria reported that her facial itching had ceased.  Within 72 hours Julia, who had not attended school for three years due to the vision impairment caused by her conjunctivitis, removed her sunglasses and began playing in the sun.  Once able to open her eyes, it was noted that she had phlyctenular kerato-conjunctivitis, inflammation of the conjunctiva and cornea caused by microbes, which has specific clinical features and may result in scarring and vision loss after healing.  TB Uveitis was also diagnosed, as the edges of her pupils had visible nodules, as per the photograph (from http://www.retinagallery.com).  Upon discharge one week later, her visual acuity was 36/3 (left) and 12/3 (right), with probable permanent damage caused by the uveitis.  No specialist follow up was available for this.

I spent some time talking to Maria via a Tetun translator.  She and her husband are subsistence farmers, growing corn and other vegetables, which they use to feed themselves, and also sell locally.  Maria’s husband is a carpenter, but this work is casual and irregular.  Julia is the eldest of four children, two of whom had stayed home with their father, while the youngest (3yo) had travelled to Dili with Maria and was staying with extended family whilst Maria and Julia were hospitalised.  No other family had any signs or symptoms of TB.  The only contact tracing undertaken is to ask this question, and recommend medical review for anyone reporting symptoms.

Traditional style homes in Lospalos are thatched, elevated huts like the photograph on the left.  However, Maria reported living in a small concrete, ground-level home.  My observations in Dili were that those with a better standard of living have concrete style homes, such as the one on the right, while many live in thatched-roof, mud-floor, bamboo huts without running water or sanitation.

Maria and Julia had visited many clinicians and healers over years, including at two sub-district hospitals, looking for a diagnosis/cure.  In 2010 they spent a week as in-patients, where Julia was given unknown tablets and unknown eyedrops, neither of which had helped.  Maria had been given a number of different creams over the years, none of which helped, and some of which had exacerbated the itching.

The journey from their home in Lospalos District to Dili (approximately 250km) cost $8 each on a bus which took approximately 5 hours.  They stayed with family in Dili, and attended a private clinic first, who were unable to help, but advised them to attend BPC.

This case highlighted the issue of diagnosing a relatively rare form of a common illness in high prevalent settings, with limited education and resources.  The rapid improvement once correct treatment had commenced, after so many years of unexplained suffering, with permanent damage related directly to the delayed diagnosis, was at once astounding and devastating.

Issues working at Bairo Pite Clinic included an extreme shortage of even the most basic supplies such as gloves, masks, medications and dressings.  The below photograph of one of the few handwashing basins at the clinic shows how basic the utilities are.  Taps and water outlets are damaged, and liquid soap is watered down so much that it does not lather up.

Coming from a low-prevalence, high-resourced Tuberculosis Control program in Australia, the experiences I had at BPC were informative, astonishing and life-changing on many levels.  I would highly recommend the experience, for anyone genuinely interested in global health particularly in our geographical region.

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