Pearls of Maternal Wisdom

Balancing two boxes of mangoes on her head, a complete stranger greeted me gregariously as we came face-to-face around the same corner this morning.  The only word I understood was “American” but I recognised a sales pitch and turned her down as graciously as possible.  Lifting my parasol to dodge the roofs of tuk tuks and the heads of moto drivers, I passed a blind man playing a traditional string instrument alongside a small boy beating a drum as they strolled slowly along the roadside, busking.  Another small boy, pulling on a checked kramar scarfe wrapped around the man’s waist, was guiding him along the busy street.  I replied to his “hello” without stopping, simultaneously conscious that offering money to children who should be in school only adds to the problem of begging, and that I seemed indifferent to their wretched plight.  The footpaths are crowded with food stalls, parked motos and displayed goods so that throughout Phnom Penh pedestrians are forced to walk on the road, sharing space with the neverending purr of moving wheels and engines.  Ahead of me the yellow umbrella of a monk appeared to float behind his orange robe and sandaled feet.  Battered bananas sizzled in hot oil beside one vendor’s moto-sidecar shop; a barrow filled to overflowing with green coconuts was being pulled by a vendor across the street and another barrow filled with cardboard, plastic bottles and cans was being pulled towards me.  Above us white balls of cloud gathered, pushing a close blanket of stifling dank air around me so that by the time I reached the clinic my clothes were sodden with my own sweat.

Every day my mind wanders to an 18yo boy lying on a hard wooden bed base underneath his family’s bamboo elevated home on an island in the Mekong.  I met him when one of the nurses I worked with in 2014 asked Caz and I to visit him for a western opinion.  He has a tumour on his thigh so large and grotesque, that it seemed a medieval spectacle when the sheet was pulled back for us to examine it.  When we left his home we both hoped we had been able to disguise our shock.  A nurse visits him daily for $2.50 to dress the wound resulting from the diagnostic biopsy which his family went into debt to pay for and which is slowly turning his whole leg black.  He will die soon, with almost no medical intervention.  You need money to pay for oncology services, which his family are simply unable to consider.  We offered what we could, thanks to donations from a friend in England.  It is little but perhaps enough to reduce the family’s financial stress as they lose their son in the prime of his life.  He refuses to eat, believing that food is causing the tumour to grow.  Our attempts to suggest otherwise seemed futile and I can’t blame him for believing as he does.  With any luck the tumour will remain numb, as it has so far, so he can die without pain.  It is hard to imagine speaking of someone’s 18yo son in this way, but at the same time I have learned that such lack of health care is far more commonplace on a global scale, than the entitlements that we in the “other world” assume as our moral right.

Australia’s current affairs series The Project recently hosted Bill Shorten, our Leader of the Opposition in parliament.  He talked about housing (un)affordability in Australia as a video camera drove past a nice but ordinary home.  I envisaged the tree-lined street this house is on, inhabited by ordinary working people living their Australian lives which we all assume as unremarkable.  As I watched, I reflected on the streets of Phnom Penh and the way they constantly highlight to me, that so-called “ordinary” Australian (and NZ, American and European) life is actually a remarkable and privileged phenomenon.  An ordinary Australian home is a deluxe manor in comparison to where most people in the world live and an ordinary Australian life is sumptuous and stress-free compared to most lives.

It is difficult to describe the difference as a multitude of factors cause the vast disparity between those of us from high income countries, and the great majority of the world’s population.  Housing, access to health care, education, food, transportation, employment, income and perhaps most significant but least apparent, our levels of freedom.  No matter what I do as an individual, I belong to a nation with a robust economy.  During my modest, small town New Zealand upbringing, one of the expressions my mother used regularly was “the world is your oyster“.  Even from our little three bedroom suburban home, this was a fact.  For most of the world it is a whimsical fantasy which any fair and loving mother would not tease her child with.

Another favourite of Mum’s was “we don’t know how lucky we are“.  I was in my forties before I came to appreciate the truth of this expression.  At the same time I realised that so many of us go through life never appreciating our unique fortune in place and time.  As a consequence we miss out on many opportunities to help those in our world who are not born to inherent privilege.  My ultimate fortune came from learning that the value of life has little to do with accumulating self-centred and material achievements, and everything to do with making myself useful to those most in need.

Little Houses in Rice Fields

Coinciding this year with Easter, Cambodians are celebrating Khmer New Year, one of the most important celebrations on the local calendar.  Festivities commemorate the end of harvest, giving farmers a chance to frolic and relax before the Wet Season begins.  Contributions are given at pagodas before the ensuing paltry months when the monks take a break from their daily routine of parading the streets underneath yellow umbrellas, stopping at every vendor to exchange alms for blessings.  Many businesses close for Khmer New Year, as families living away from each other reunite to celebrate.  Despite the usual commotion of trade and economic activity coming to a near-halt for the weekend, the streets come alive with a party atmosphere every afternoon.  Vehicles even more overcrowded than usual cause traffic jams as hordes converge at parks, temples and riversides.  Young people hurl water and white powder at each other and at passers-by.  Street performers entertain, pick-up trucks boom music from loudspeakers as their passengers use the trayback as a dance floor, the same music booms from the few open restaurants and bars.

With four days off I wanted to visit various people in the villages which are too far away for me to pop in regularly as I once did.  Three expat colleagues decided to come along for the ride.  I contacted Dan, who found and booked a hotel that was open for the weekend and we made our way on Friday morning, to Kampong Cham.  Dan met us at the bus station, delivering us to the hotel before heading home for his own family celebration.  We did not see another tuk tuk at all during the remainder of that day.  With no bicycle hire or other transport available, we found a restaurant near the hotel and seat-danced our way through a late lunch.  After a rest in our rooms we strolled to the Bamboo Bridge to gate crash the street party.

On Saturday we sauntered along the abandoned riverfront, noticing a solitary tuk tuk parked in the distance upstream where usually there are galores of “Madaming” tuk tuks.  Dan called to ask when we needed him.  Midway through our conversation he announced “Oh I can see you walking, I am coming now”, as the lonely tuk tuk u-turned and crawled toward us.  We drove the short distance to Central Market for a $1.75 Khmer breakfast.  The others then climbed on board for a day playing tourist through the villages to Wat Maha Leap (one of Cambodia’s few remaining wooden temples), 20km downstream of town.  After waving them off, I hit the smattering of open stalls at Central Market to find clothes for the children I planned to visit.  Skinny Tuk Tuk was with his family until mid morning but had agreed to pick me up and drive me in the opposite direction for said visiting.  When we met I asked if he’d ever been with me, to John and Sarah’s house, on a remote dusty lane about 15km from town?  “No but I know that place, on the left, beside my father in law’s rice field”!  A small hut on a small track amongst rice fields in a very small world!

We made an interrupted trip.  First via a rice vendor where one by one, two 50kg hessian sacks of rice were heaved onto a shirtless man’s shoulders and piled onto the floorboards of the tuk tuk, making an elevated footrest between the front and rear-facing seats.  Second stop was at Skinny’s little home on the outskirts of town.  Upon questioning he explained that when they married, his wife had three cows which they sold to get the cash to build this little hut on his parents’ land.  Perched on a raised mound to avoid wet season flooding, the concrete floor merges with concrete walls ending at about shoulder height.  Panels of red corrugated tin sit on this concrete shelf, forming the remaining walls to the roof, made of the same tin.  Square holes have been cut in the tin to form glass-free windows which can be covered over with the excess tin when they need to be closed.  A single electrical wire affixed at intervals to the wall climbs to the ceiling where a light bulb hangs down above the centre of the room.  This modest little home is clean and obviously loved.

His wife greeted me on the dirt path to usher me inside.  As a plastic chair was brought into the room for me his father, lying on a wooden platform bed dressed only in a pair of black silk pyjama pants, sat up abruptly.  We held a conversation together in Khmer and English, guessing what each other was saying and smiling in mutual amusement at the experience.  Five year old son was sitting on the concrete floor beside grandad’s bed and two year old was swinging asleep in a hammock tied between the foot of the bed and a hook on the wall.  After a brief visit, the children were swept up and seated alongside their mother opposite me in the tuk tuk, staring at me in unblinking astonishment.  When I started bouncing exaggeratedly with every pothole their serious faces broke into giggles.

About 10km along the track towards John and Sarah we pulled into an elevated wooden home where I was once more invited in, this time to meet the in-laws.  Wife and children were spending a few hours here while Skinny and I went visiting.  A young brother in law sat beside a hammock suspended between two supporting poles, swinging his baby daughter to sleep; toddlers pottered on the bamboo strip floor, peering out over the homemade bamboo baby gate at the doorway.  I was instructed to sit under the ceiling fan and Mother-in-law sat on the floor beside me for more Khmer-English conversation.  Bottled water was presented to me and I was asked if I needed the toilet or a shower!

Soon enough Skinny suggested we leave and so we bounced our way down the dirt lane towards John and Sarah’s self-built wooden hut.  John was crouched at the back wheel of a motorbike, repairing a puncture at his front door while his customers sat on the homemade wooden table where all visitors convene.  Care taking a villager’s cow for a small fee, she was standing beside John chewing on hay, her long triangular ears moving forward as though listening to our conversation as she watched us through long, pretty eyelashes.  Chickens and a tiny dog with puppies pottered underneath the table.  Skinny heaved the first sack of rice out of the tuk tuk and hauled it into the dirt floored hut, landing it on the raised wooden platform acting as a low mezzanine level where the family sleep and live.

Last time I visited I asked if the children had enough clothes and was told no.  In my bag were a few outfits for each of the three children.  Once Dad’s customers drove away I presented the clothes.  The children’s eyes lit up and 8yo son could not wipe the grin from his face.  He and his 6yo sister ran inside the house and pulled the wooden shutter across the square space in the wall to close the window.  Moments later they reappeared in a new outfit each, which to my relief fit perfectly – new clothes that don’t fit might as well be second hand.  Dad dressed 20 month old and Skinny translated for me that these were not from me, but from family in Australia who want to help.  We posed together for a photograph, Dad instructing the children to put their hands together in a gesture of thanks.  A beautiful keepsake photograph which I’ve since shared with the donor, whose generosity offers me these joyous moments.

We talked about our plan to purchase a cow with money I received from other family for Christmas and agreed that when I visit next month, the purchase can happen.  This has taken a while as I initially thought I could use Cows For Cambodia but they are based in Siem Reap and the transport costs were prohibitive.

As we were sitting in this serenely beautiful place which always evokes my favourite childhood books, Little House on the Prairie, a row of villagers sauntered past us up the track towards Dara’s village, a few km away.  Soon enough we said our farewells and began the drive towards Dara’s home.  The row of three women and two small boys had entered and were traversing a rice field.  As we drove near, one of the women waved us down and Skinny pulled over.  She shouted something which included Dara’s name and Skinny asked me, can we take them home because they live near Dara?  Sure, jump in!  Two of the women and the two boys climbed on board, all feet meeting on the rice sack.  The oldest lady stopped on the track, apparently refusing to get on until I insistently waved her in.  Later Skinny explained that he had joked to them that it would cost them 10,000 riel ($2.50) and she was too afraid to take it as a joke until he reassured her!  They chatted to me in Khmer the whole way, I have absolutely no idea what we were talking about until they jumped off at the corner near Dara’s home, thanking me and calling out that they’ll see me next time!

Hugs and laughter greeted me at Dara’s house and we were ushered up the ladder into the house.  Dad hoisted the rice sack onto his back and climbed into the house looking like he’s done this a million times.  Lots of conversation went on about where I work now, about Dad trying to work in Siem Reap but his employer refused to pay him daily, meaning the family had no income except once a month on pay day.  Dad came home again because they cannot afford to survive without a daily income.  Sixteen year old daughter tried working as a cleaner for a wealthy family south of Phnom Penh but has returned home.  The incessant search for an income to keep the family afloat is most evident in this robust but struggling family.  The children are on holiday, Dara was upset because Mum wouldn’t let him join the New Year party which we could hear booming in the distance.  He soon cheered up when I pulled out some clothes which he took to the corner of the room to try on.  I hadn’t guessed him well and the shorts and shirts were too big, but a pair of ripped-knee jeans fit.  Someone found a pair of scissors and Dad cut the sealed button hole for him before he sat next to me and continued sulking at Mum and Dad while sneaking me the occasional smile.

I promised to visit again next month and we headed back towards town.  Unaware that I was in town with friends, Skinny had other ideas for me.  We stopped at his in-laws’ home again and this time the plan appeared to be that I would stay for a family party.  A pot of steamed rice, a plate of honey-marinaded chicken and a plate of noodles were placed in the centre of the floor and Skinny joined me for the most delicious homemade lunch!  They then asked me if I wanted to lie down for a snooze, when I declined, did I want to have a shower?  Meanwhile dozens of people arrived, men with ice and beer, women with plates of food, snails and beef and freshwater shellfish were all on offer and when I said no, then surely I wanted a beer?  What a thrill it would have been to join a village family for New Year celebrations, but I had to spoil the fun and get a lift back to town, promising to join them next time.

Back in town the others were full of adventure and fun thanks to Dan’s trip to the Wooden Temple with them.  Feeling semi-responsible for their enjoyment, it was fun hearing that they’d enjoyed a day in “my” rural Cambodia as much as they had.  We joined the throngs at the Bamboo Bridge again for more street partying that night, sitting above the revelers traveling to and from Koh Paen Island as we sipped G&T or coconuts in their shells.

Standing On The Outside, Looking In

It is much more difficult in Phnom Penh, to find the impetus to write.  My accommodation is a fifth floor apartment overlooking rooftops for as far as the eye can see.  This removes me from community life somewhat although I’m slowly starting to recognise the neighbours beyond our apartment block.  We recently relocated our office to be near the clinic, in another part of town.  Now we drive to and from work in tuk tuks.  This puts us on the bustling city streets for half an hour each morning and evening, with many fascinating sights and sounds.  In work hours I find myself walking the short distance between office and clinic a number of times each day, again putting me on the always-intriguing streets.  Still, a significant amount of my spare time is spent suspended in the sky, disconnected from the community I live in.  This is not a complaint – I love the apartment and am enjoying my expatriate colleagues / housemates.  We arrive home before 6pm, I go for a swim, share a drink and meal, then hit the sack in time for another work day.  Our location and routine diminish the inclination to write.  Perhaps once I get a weekend routine going this might change.

According to The World Bank four million people were lifted out of poverty between 2005 and 2015 due to positive developments in the Cambodian agriculture sector.  Most of these people remain poor and vulnerable with a loss of US70c per day being enough to drag poor families back into poverty.  Defining and measuring these categories is a complicated discipline which I am not equipped to explain here.  My observations on poverty are that it is not always, or solely, about individual income.  Rather, there are many factors at play.  Someone with a home and secure and livable income who lives in a place where access to education or health care is limited, is still affected by poverty.  Nowhere is this more obvious, than in many of Australia’s remote indigenous communities where public facilities such as education and health care are often insufficient and people experience social and economic challenges which affect their well being and contribute to the indigenous health crisis.

An extremely common Cambodian story is that of families separated due to work commitments.  Twice a year the nation celebrates important national holidays which routinely see economic activity grind to a halt much like Christmas or Easter in western nations.  My tuk tuk friend in Siem Reap, who I call Rav here, had not seen his mother for three years despite living a mere 320km away.  His sons are now 5yo and 6yo, significantly different to the tiny boys their grandmother last saw.  Rav is probably “poor”, rather than impoverished.  He pays $40 a month for a small rented room (literally a room with a bathroom and a kitchen bench with running water on one wall).  Driving tourists to the temples makes this rent and the family’s other short term expenses do-able if he is careful, except in low season when the lack of customers turn an already competitive market into a very tight squeeze.  His income doesn’t stretch to taking time off or to the cost of tickets to travel away.  When I saw him in Siem Reap in February Rav was very low, feeling trapped by his economic circumstances and worried about his mother’s ill health.  I have regular donations from a number of friends and family and so I told him that I had some donor money I could contribute to get the family to Phnom Penh to visit his family.  At first he was reluctant but as Khmer New Year drew near, he agreed to my offer and brought his wife and sons to Phnom Penh for a three day visit.

The family met me for lunch oneday.  Rav said that his mother could no longer walk and they did not know what to do for her.  He did not know if her feet were swollen, but both feet were causing a problem.  My suspicion was liver or heart failure, which lead to fluid retention and immobility; or uncontrolled diabetes, which can lead to loss of feeling in the feet due to a build up of sugar in the bloodstream.  I suggested that she should go to hospital but they were reluctant due to hospital fees.  70% of Cambodia’s health care costs are paid for out of pocket by patients, with many thousands of already-poor people going into debt or selling assets to cover the cost of medical needs.  A large portion of the country’s population are considered vulnerable to these “health shocks”.  Paula’s family, who sold their house during her illness and whose father now lives permanently in Malaysia in order to earn enough money to continue paying off their health care debts, are an example of this cycle of poverty connected to medical care.

With their hesitance about hospital I suggested to Rav that I visit his mother.  That night at dusk, after a half hour tuk tuk drive to the edge of town, I arrived at her tiny rented room.  Rav’s two sisters with their partners and children, his mother, and he with his brood were all apparently occupying this tiny space.  Perhaps another reason that Rav doesn’t make regular visits to the family?  Lying on a bamboo mat on the floor, his mother sat up while I found a space to sit beside her.  With Rav’s translation she proceeded to give a very clear description of sciatic pain radiating from her right buttock into her groin and down the back of her right leg, with some lesser pain in the left leg.  Astoundingly I had just been discussing sciatica with a family member who had been given a low dose of Amitryptilline which alleviated their pain almost immediately.  With the assistance of a physician friend I was able to recommend the medication.  Darkness enveloped us and Rav suggested that I needed to go, as though he was concerned about my safety in his overcrowded little laneway.  The assumption of people like Rav, is that they have nothing to offer when in fact, their small acts of caring and of sharing their lives have a big impact.  It is amazing to me, to be so warmly welcomed into the homes and lives of people living so differently from me.

With many thank yous and goodbyes, the tuk tuk wended down the dirt lane and out onto the main boulevards towards home.  Phnom Penh’s outer suburbs at night are an experience unlike the Phnom Penh expat night life where well lit pavements are lively and fun but removed from the grime, congestion and poverty which most expats, despite living in this city, are far removed from.  Elsewhere in the same city, public squares are unlit and dirt-floored, chickens saunter through crowds as their cousins rotate on spits, open fires grill all sorts of meat, you inhale a fluctuating mix of barbecue smoke and exhaust fumes, markets heave with people, motos and the beat of popular music and traffic regularly grinds to a halt.

Traveling through these bustling, dimly lit neighbourhoods I pondered, as always, on the difference between my privileged and egocentric experience of the world, which comes with it’s own set of complicated disadvantages, and the world as it is experienced by most humans.  The more I see my birth entitlements, the more I see that others are no less deserving than me and that my so-called successes were really more a matter-of-course related to my privilege, than indications of real success.

Success in Life 02

My Dolores Umbridge of Writing

As a kid I was fearful and timid.  It stemmed in some part, from being overly sensitive to the negativity of others.  Thankfully I grew out of that.  I became braver over the years, to persist with blogging as something that I get enjoyment from, regardless of who may or may not approve.

When I look at my first blog posts, ten years ago now, they were brief and self conscious.  In one I claim to have “Writers Block”, but I remember the feeling of fear, that people would laugh and gossip if I wrote my thoughts down, so I should stay quiet despite the impulse to write.  At the time I was exchanging daily emails with a friend who repeatedly told me I should save my stories and reflections of life in Central Australia to share with others, who would enjoy them as much as she did.  It was this encouragement that initially saw me try to write on a political opinion site, which was a disaster as neo-conservative antagonisers bulldozed me into silence.  This seemed to drive my determination, even more so when a relative who writes professionally encouraged me, advising when I expressed my fears, that writing should be my concern, and not how others might perceive or criticise what I write.  I am so glad I listened because the enjoyment of writing has drowned out my insecurities and beyond learning and improving as a writer, I faced a demon and crushed it.

JK Rowling has her foibles.  She wants to “end the institutionalisation of children worldwide”.  This completely ignores the need for effective institutions, of which many are making a positive difference to the lives of millions of children who would otherwise exist in unspeakable ways, and/or die unnecessarily.  There are many appalling institutions exploiting children, which should be targeted and shut down, but in her work to eliminate these, Rowling completely ignores the other side of the coin.  Her intention is good but her view of the world comes from a purely first world, privileged mind set.  She needs to familiarise herself with the good being done in the world by institutions, as I wrote in a recent blog, Throwing The Baby Out With The Bathwater.  The children thriving at Wat Opot and the home where the Phter Koma children now live, would be horrified to learn that they are targeted in Rowling’s mission and I am sure they would love the opportunity to teach her what they know about their lives, removing some of her first-world assumptions and misconceptions.  One of my friends who has dedicated her life to working with abandoned children, once said “it’s ironic that someone who made a fortune writing about children in an institution, now works to close every institution down without understanding the issue”.

Anyway, I had to say that before I quoted her on the topic of writing.  I relate very much to the tweets she posted yesterday even though my blogs are not “creative writing”.  Every time I published an early blog, no matter how brief or reticent, it gave me the idea that I could, and each time I did it again, I became more confident and less concerned about “what others might think”.  I learned about writing but I equally learned an important lesson about challenging your demons.

Rowling’s Tweets of 3 April:
Even if it isn’t the piece of work that finds an audience, it will teach you things you could have learned no other way.
(And by the way, just because it didn’t find an audience, that doesn’t mean it’s bad work.)
The discipline involved in finishing a piece of creative work is something on which you can truly pride yourself.
You’ll have turned yourself from somebody who’s ‘thinking of’, who ‘might’, who’s ‘trying’, to someone who DID. And once you’ve done it…
… you’ll know you can do it again. That is an extraordinarily empowering piece of knowledge. So do not ever quit out of fear of rejection.

Injustice in Health Part II

It is estimated that 230,000 Australians are infected with Hepatitis C virus.  In Cambodia the estimation is somewhere between 300,000 to 750,000 people.  In late 2015 a number of new Direct Acting Antiviral drugs (DAAs) which cure Hepatitis C in 12 to 24 weeks with few side effects, became available via at least three different drug companies.  Drug prices ranged from US$84,000 per 12 week course, forcing governments in high income countries to put strategies in place to offer treatments to their citizens.

In the UK where it is estimated 214,000 people are infected with Hepatitis C, the government capped the number of people able to be treated because of cost, to 20,000 people over a two year period.  Most European governments made treatment only available to those with advanced liver disease.  Australia took a different stance, negotiating with drug companies for a volume based price agreement.  Treating a large number of people drove the cost per treatment down whilst ensuring profits to the drug companies.  The government assured DAA treatment to all Hepatitis C infected citizens free of charge, an ambitious and dramatic move which I was excited to be a part of for a short but fulfilling time.

On the other hand, low to middle income countries have little to no chance of offering treatment to their citizens outside of the private market, which is susceptible to all kinds of errors.  In Australia patients attend an appropriate clinic where they are determined as eligible for treatment.  The few criteria are that you must be infected with a genotype of the virus that is treatable and be well placed and agree to good adherence of both treatment and follow up appointments.  The registered clinician calls a ‘hotline’ where the patient’s identification and details are recorded on a centralised system alongside the prescribing doctor’s details and an approval number is given for the drug to be released by a registered pharmacy.  In Cambodia, the drugs are available for a price, at private pharmacies without regulation.  DAA treatment is only effective if the correct dose of two molecules (ie a combination of two drugs) are given together, for the correct duration, all of which requires clinical assessment following recommended guidelines.  The private market side steps such structure, allowing for many errors including the risk of resistant strains of virus evolving when exposed to incorrect or incomplete treatments.

An example of the pricing game that pharmaceutical companies play is in the table below where API = Active Pharmaceutical Ingredient.  The mark-up obviously makes a small number of people extremely wealthy.
HCV Drug Price Table

The point of the MSF Hepatitis C Treatment program here in Cambodia is:

  • to offer treatments to a population who would otherwise not be able to access such medications;
  • to offer treatments to a small portion of the population who may be able to afford medications from the private market but may not receive the correct molecules for the correct duration to ensure cure (although there are clinicians who are qualified to offer appropriate care and treatment – but there is no regulation);
  • to put strategies in place which will ultimately allow the Ministry of Health to take over a functioning HCV Treatment program;
  • to advocate for reasonable treatment costs by negotiating with drug companies and/or introducing generic treatments which can be provided at a fraction of the patented costs.

Medicines should not be a luxuryGilead launched Sofosbuvir in the US at $1,000 per pill, although it can be mass produced for less than $1.00 per pill.

Some of my information herein comes from an organisation founded by Medecins sans Frontieres in partnership with six other organisations, and who we continue to work alongside: Drugs for Neglected Diseases Initiative (DNDi) .  One of the best things about working with an international organisation is the exposure we get to global health care programs working effectively towards a more just world.

Lives matter less

Injustice in Health Part I

At about 23 years old, in the pub one night I announced “politics doesn’t interest me”.  A friend replied “when you start nursing you’ll become political because you’ll be concerned for your patients”.  This was a true prediction, but what it missed was an equally true unfolding interest in human psychology, not so much from an individual perspective, but around group dynamics and what connects people who have similar health problems.  Common human characteristics often relate closely to the prevalence of certain diseases in defined populations.  Medical Anthropology is the investigation of social, cultural, physical and linguistic characteristics that influence population health, all of which I have been witness to during my nursing career.

For more than ten years I worked on a Tuberculosis (TB) Control Program in Central Australia.  The diagnosis of TB in our area during the early 2000s was almost exclusively made in indigenous people living in poverty with underlying ill health.  In later years as our population diversified, the incidence of TB disease increased in overseas born people from countries with high rates of TB, but who were usually otherwise in good health.  The difference between these two groups of people was fascinating, with indigenous patients usually being from remote and marginalised communities, not well engaged with the mainstream community, for example almost always unemployed with low levels of education.  The overseas group were almost exclusively immigrants engaged in the workforce and education systems.  Indigenous people had much lower rates of exposure to TB but their ill health made them more susceptible to becoming sick when they were exposed.  In contrast, the overseas born cohort were less susceptible to illness, but the high rates of TB in their country of origin meant they had likely been repeatedly exposed, finally succumbing despite good health and a strong immune system.  They would have fallen ill in their own country too.  However, in countries of high TB prevalence the most frequent TB disease presentations occur in the poorest, most malnourished and unwell people, as I have written about during my experiences with TB in the Timorese and Cambodian contexts.

The remote community / urban town camp indigenous population have unique perspectives and ways of interacting which made my work highly challenging but very entertaining and rewarding.  The immigrant population had equally unique perspectives, which changed depending on country of origin and differing cultural influences but, I think because they had chosen to move to Australia and secure a place in our society, seemed somehow more comparable to my own outlook on life.  I have often reflected on the fact that indigenous Australians are foreigners in their own land, which is frequently highlighted in the way that mainstream Australians often speak about, judge and criticise them.

At no time in more than ten years, did I meet a non indigenous Australian born person who was sick with TB.  This does not mean that we don’t or can’t get TB, and in other parts of Australia during this period, there would have been hundreds of such cases.  But TB is a disease of poverty which infects those already in poor health or those with repeated exposure to the bacteria.  Non indigenous Australians are on the whole in good health, from a country with very low prevalence of the disease.  This was not always the case, and when the First Fleet of convicts and their captors arrived in Australia from England in 1788, 2% of the British population were dying from TB every year.  The TB bacteria is believed to have been introduced into Australia at that time and it soon became the biggest killer of the indigenous population.  Rates of TB in Australia reduced in the 1960s and 1970s as our living standards improved, such as reducing levels of overcrowding and improved rates of nutrition and general health.  To this day the rates between the Australian born non indigenous population and the indigenous population are significantly different, due to differences in overcrowding (increasing the risk of exposure to disease) and underlying health (increasing the risk of becoming unwell with TB if exposed).

In the middle of last year I left the TB program to work on a Viral Hepatitis program in Central Australia, coordinating care for people infected with Hepatitis B or Hepatitis C.  These viruses are unrelated but they are both bloodborne, meaning someone infected with the virus can pass it on via blood to blood contact with another person.  With high enough levels of virus in the bloodstream they can both elicit an immune response in the liver which leads to cirrhosis, liver failure and liver cancer.  Bloodborne transmission can occur via sexual contact; mother-to-baby during pregnancy, labor or breastfeeding; inoculation with infected sharp objects (razors, needles, tattoo equipment, even toothbrushes if there are breaks in the mucous membranes of the gums) and transfusion of infected blood.  Risk varies with each transmission route and each virus.

In Central Australia these two diseases also present inside quite distinct population groups.  The Hepatitis B cohort was far more closely matched to our TB cohort, with a combination of indigenous and overseas born people forming the majority of cases.  There is a vaccine against Hepatitis B which was introduced in the Northern Territory in 1989.  The prevalence of Hepatitis B in indigenous Australians plummeted from almost 5% in those born before 1990, to 0.19% in those born after 1990.  This suggests most indigenous people contracted the disease in infancy, so probably via the maternal transmission route.  Our overseas born Hepatitis B cohort were often younger, suggesting a lower likelihood of effective vaccination and probable high rates of mother to child transmission.

Hepatitis B is a largely invisible disease, especially in those infected since childhood, who often do not know they are infected.  Those who do know often feel no ill-effects of the infection, especially if they have low health literacy or a different understanding of what causes disease.  This can make it often very difficult to engage with our Hepatitis B clients, who ideally should receive regular monitoring to ensure they are not progressing to phases of the disease which require medication to control the damage that the virus can do.  It is a complicated disease which many medical doctors have limited understanding of.  Medical knowledge of the disease and it’s phases has changed significantly in recent years.  Ultimately, someone infected with Hepatitis B can have undetectable levels of virus in their blood, meaning the damage to their liver is negligible.  These levels can change over time and eventually cause life threatening liver disease.  Currently the only treatments available for Hepatitis B are drugs which can control the levels of virus in the blood but do not cure the infection. It is hoped that curative drugs will become available within the next decade.  The best prevention for Hepatitis B is vaccination and safe practices to avoid transmission similar to HIV prevention advice.

Despite many similarities, Hepatitis C in Australia is a different kettle of fish altogether!  In the Australian context, a large proportion of Hepatitis C infected patients have a history of sharing infected needles, usually as intravenous drug users.  This is not always the case, as donor blood has only been screened for Hepatitis C virus in Australia since 1990 (two years after the virus was discovered) and infected tattooing and body piercing equipment is also responsible for some transmission.  Mother to child transmission and sexual transmission also occur, but at very low rates.  There is no vaccine against Hepatitis C.  Until the last two years, treatment for Hepatitis C was a long and involved process with common, severe side effects and a low cure rate for those who managed to tolerate the treatment course.

The demographic of Hepatitis C clients in Central Australia was mainly middle aged to older non indigenous Australian born people who had at some point in life, experimented with IV drug use.  Some of these clients were still using and a small number of these occasionally attended their appointments clearly under the influence of drugs.  Many had experimented with drugs in their youth, perhaps only once.  All were acutely aware of the stigma of their disease, a frequent topic of conversation and concern.  Some were difficult to obtain blood samples from as their veins were scarred from frequent injecting.  I became skilled at drawing blood from difficult veins but I occasionally had to either refer people to a laboratory or even an anaesthetist for venous access expertise.  Some clients were willing to take their own blood from an obscure vein that I was too anxious to puncture.

Most Hepatitis C clients were infected during adulthood and as Australian born English speakers had reasonable to above-average education, meaning they understood their infection and were engaged with the health system.  This was an entirely different experience for me, to have clients who I could contact by telephone and make clinic appointments with; who adhered to recommended treatment and follow up and had a westernised health literacy.  The more significant problems for this group of people related to the stigma of their disease and for some, their continued IV drug use with related problems such as homelessness and problems with the law.  A number of my patients requested appointment times planned to avoid being seen, others asked to enter the clinic via an alternative entrance and some insisted that certain investigations be performed interstate so that their diagnosis remain anonymous.  After initially feeling reticent about working with drug users, one of my best-loved Hepatitis C patients was a gentle elderly man trying to break a drug addiction that started at the age of eleven in inner city Melbourne.  Other patients included successful business owners and qualified professionals.  The diverse range of people who had used recreational intravenous drugs taught me a lesson in the absurdity of judging others in general, but particularly the way that certain diseases carry stigma in certain cultures.

Most Cambodian Hepatitis C patients have been infected due to unsafe medical injecting practices, courtesy of a health system still reflecting the devastation of war and genocide.  Unlike HIV and TB, there is no stigma attached to Hepatitis C in the Cambodian psyche, as there is in Australia.  Our Hepatitis C clients come from a diverse range of rural and urban communities, and it is far less common on this project, to see the malnutrition and startlingly visible poverty that was so rampant on the TB program in Kampong Cham.

Stigma and injustice go hand in hand with ill health in so many ways.  The interplay between society, culture and ill health sees this injustice manifest in different ways across the globe.  Stigma is only ever a destructive thing, impeding people’s access to proper health care.