By Sian White OAM, Researcher at London School of Hygiene and Tropical Medicine and 2014 recipient of an Order of Australia Medal for her service to international relations, particularly through TB prevention programs in the Pacific. You can hear Sian speaking on RESULTS Australia’s February Fact & Action Call here.
Growing up in Australia one could be forgiven for thinking Tuberculosis (TB) was an artefact of the past. It is a disease which feels comfortably distant to us; only being idealised every now and again through period dramas.
Of course, in reality TB is far from glamorous and has certainly not yet been assigned to the history books of our time. I was fortunate to be woken up from this rose-tinted reality while in Papua New Guinea (PNG), our nearest neighbour and a country where every 2 hours someone is still dying from this entirely curable disease.
Working for World Vision on the National TB Program of PNG I began to realise why the story of TB is not in our headlines. For so many years scientists and health professionals have been talking only in clinical terms and statistics about TB bacteria. But the story the public really needs to know is how TB affects the lives of individuals and communities.
TB is a disease which can strip a person of all it is to be human. First of all you lose your physical strength and mobility; becoming just a frail reminder of your former self. Due to the stigma of the disease, many individuals face extreme and unjustified discrimination. I have heard too many cases of individuals being fired from their workplaces, expelled from their schools and, perhaps worst of all, disowned by their families.
On too many occasions I have found myself lost for words as patients describe the inconceivable challenges TB had imposed on their lives. One such individual was Solomon. I remember seeing him from across the hospital ward and even though I had chatted to many patients that day his harrowing story stayed with me. Solomon had drug resistant TB and had been sitting on that same bed for a year. Every day he took a concoction of 23 tablets and for the first 9 months he had received daily injections. Yet for patients like Solomon this is normal – the best modern medicine can do.
Solomon spoke remarkably calmly as he described what TB had stolen from him. First he lost his wife. The TB drugs she was prescribed had caused her to experience horrible hallucinations and she never got better. Before her death she unwittingly passed TB onto their 11 year old daughter. Since there are no special paediatric TB drugs Solomon’s daughter received crushed adult tablets which, as with many drug resistant TB patients, caused her to lose her hearing permanently. When I met Solomon his daughter had died just a month before.
Not surprisingly Solomon asked me why he should continue his treatment. It was hard to find words of encouragement. For patients with standard TB almost all cases can be easily cured through 6 months of treatment but for drug resistant patients the odds are much more slim with only half of patients globally surviving treatment.
It was hard for me to look Solomon in the eyes and explain that the toxic regimen of drugs he must take for 2 years is the best we have. All the while knowing that the drugs we use to treat TB were invented more than 40 years ago. It is hard to explain to someone like Solomon why our main mode of diagnosing TB is the same diagnosis that was used 130 years ago when Microbacterium Tuberculosis was first discovered. And for the loved ones that remain to support patients like Solomon it’s hard to explain that we don’t have a vaccine efficacious enough to protect them.
Australia’s responsibility to TB control is twofold. On the one hand Australia must take action because it is a dereliction of our humanitarian duty to sit idly by while our neighbours suffer needlessly. However, with more than 60% of the world’s TB burden occurring on Australia’s doorstop, in the Asian and Pacific region, we need also need to act in our own selfish national interest before our citizens are also affected.
The key to TB control is sustained financing. We cannot stand by and allow our government to continue to scale back the aid budget and revoke our commitments to the Millennium Development Goals. Instead we must lobby for the sustained and increased financing of multilateral agencies such as the Global Fund to support TB, HIV and Malaria.
We must capitalise on our strengths as a nation and utilise our world renowned scientific expertise to fund innovative research into new TB drugs, new diagnosis tools and a new vaccine.
In the 1960s many eminent political figures believed that TB was already on the path to eradication. The decades since have shown this expectation to be overly optimistic but it is now up to our generation to make this goal a reality – while we still can.