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.