LISA CORNISH | Devex | Edited extracts
CANBERRA — In Canberra in late March, TB advocates descended on Parliament House to bring the story of TB directly to politicians, calling on them to be leaders in the fight against a disease that is preventable and curable.
This was a precursor to a high-level meeting on TB at the United Nations in September to urge governments to shore up their commitments to end the TB epidemic by 2030.
But how to convince politicians? Can advocates make inroads in time for governments to make the big commitments needed just six months from now?
Dr Joyce Sauk, a district medical officer from Papua New Guinea, and Ingrid Schoeman, an advocate for TB patients in South Africa, are both survivors of TB and spoke of their experiences at the parliamentary breakfast in Canberra.
Sharing personal struggles is an important strategy in educating politicians and policy makers and encouraging them to do more in the fight against TB.
“People’s stories, honest and authentic stories, do stand up and get the attention of policy makers — as long as it is someone who is emotional,” Ms Schoeman said.
Dr Sauk agreed that it was an important strategy that was needed to achieve change.
“Our stories are very important to building change,” she said. “It is our experiences with TB and how it’s affected our lives, changed our perceptions of the way we see things — these should be heard.
“We don’t want this happening to other people. Our stories can encourage investment into research and development in all aspects — medicine and diagnostic tools as well as taking care of the health care workers.
“Where I am from, health care workers are not insured and there are issues around infection and control, availability of masks, so we are able to help patients.”
Both Dr Sauk and Ms Schoeman contracted TB while working in hospitals and delivering health care support, showing that anyone can be vulnerable.
And the direct threat to Australians travelling internationally was highlighted through the experiences of Australian journalist Jo Chandler, who spoke at the parliamentary breakfast of her experience as a TB survivor after contracting the disease while on assignment — as well as her luck in being treated in Australia and not a hospital within a health care system that was being pushed beyond its limits.
Aligning the conversation with government policies is also important, TB consultant Colleen Daniels explained.
“We have approaches for engaging high burden countries, another one for middle income countries — especially because there is so much potential for TB to be reduced globally if they invest more — and then for developed countries,” Ms Daniels said.
Senator Concetta Fierravanti-Wells, the minister for international development and the Pacific, explained how the TB campaigns best align with Australian aid priorities.
“Twelve of the world's 30 highest TB burden countries are located in our region, accounting for nearly half of all cases of drug resistant TB and TB deaths worldwide,” Senator Fierravanti-Wells said.
“In 2017, around five million Australians visited South-East Asia and Pacific Island countries, expecting to have an enjoyable holiday. Sadly, some contracted TB and consequently, the disease is brought back to Australia.”
“In Australia, the cost of treating a single patient with drug resistant TB can be up to $260,000. This means that Australia's health security is directly linked to the health security of our neighbourhood.”
Highlighting the direct and long-term threats to Australia, both in terms of health and economics through treating a preventable disease, is an important strategy in targeting Australian politicians.
Dr Sauk said it is crucial to highlight the impact directly to donor countries — such as in the case of PNG being only four kilometers from northern Australia.
“We’re close to Australia and we have a lot of Australians doing business in PNG also, so there should be interest by the Australian government in terms of investment,” she said.
“There is no question Australia has always been helping us, but there is more to do with the drug resistant TB emerging. It requires more political support and investment.”
“The stigma and discrimination [of TB] even surround health care workers,” Dr Sauk said.
“I got TB when I was going through medical school and working in an overcrowded emergency department. We have had a lot of doctors and nurses come down with TB who won’t discuss it. We’re not immune to TB — it is everywhere. There is no respect to where you are from when it comes to TB.”