CANBERRA — September is crunch time for governments to commit to action in fighting tuberculosis — a preventable and curable disease killing millions annually. The United Nations will convene a high-level meeting on TB, with the theme of the meeting entitled “United to end tuberculosis: A global response to a global emergency.”
To this day, the origins of one of the world's oldest disease — tuberculosis — is still being debated. But the more pertinent question is where is it going?
There, advocates will urge governments to shore up their commitments to end the TB epidemic by 2030 under the Sustainable Development Goals, with confirmed attendees including the president of the General Assembly, the U.N. secretary-general, the director-general of the World Health Organization, and the chair of the Stop TB Partnership.
In Canberra, Australia, on March 27, TB advocates supported by the Australian TB Caucus, RESULTS Australia, and TB Forum 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.
But how are they working to convince politicians? And can they make inroads in time for governments to make the big commitments needed just six months from now?
Putting a human face to TB
Dr. Joyce Sauk, a medical district 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.
Sharing personal struggles is an important strategy in educating politicians and policy makers and encouraging them to do more in the fight against TB, they explained to Devex.
“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,” Schoeman said.
Sauk agreed that it was an important strategy that was needed to achieve change by September.
“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.”
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Both Sauk and 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 TB goals with domestic and international policy agendas
Aligning the conversation with government policies is also important, TB consultant Colleen Daniels explained to Devex.
“We have approaches for engaging high burden countries, another one for middle income or BRICS [Brazil, Russia, India, China and South Africa] countries — especially because there is so much potential for TB to be reduced globally if they invest more — and then for developed countries, where there is more opportunity for them to increase funding in terms of bilateral and multilateral support as well as research,” she said.
Within Australia, engaging the government on this involves looking at commitments made in the Foreign Policy White Paper.
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,” she said at the breakfast. “In 2017, around 5 million Australians visited Southeast Asia and the Pacific Island countries, many of whom 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 [Australian dollars, or $199,700]. This means that Australia's health security is directly linked to the health security of our neighborhood.”
The establishment of the Indo-Pacific Centre for Health Security was also an important indicator of where Australia’s political priorities lied, Daniels said. “So then you need to frame the argument about why they should care in that framework — that it is a health security issue.”
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. Sauk said it is crucial to highlight the impact directly to donor countries — such as in the case of PNG being only 4 kilometers from northern Australia.
“We’re close to Australia and we have a lot of Australians [who] are 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. And with Australians having a strategic role in our region, the prime minister should be able to attend this high-level meeting.”
Focusing on what countries do best
Focusing on the strengths each country can bring to preventing and eliminating TB is another strategy to better influence and direct government. For Australia, research and innovation is expertise it can supply — and there is need for them to improve their contribution in this space.
“In global TB research and R&D, Australia is not lifting its weight,” Dr. Suman Majumdar, deputy program director of health security with the Burnet Institute, said. “There are a number of areas of research Australia is involved in, but one key advance has been the Indo-Pacific Centre for Health Security. This center has AU$300 million over four years, which is largely targeted at research. That’s quite significant from a conservative government at this time, and there are opportunities to show results quickly and promptly so more can be allocated.”
According to Daniels, Australia has demonstrated important outcomes in this space in the past, with small amounts of investment in research and development — so pushing for greater investment and capability in this space to support TB could see huge gains in the global fight against the disease.
Bringing TB to the forefront of public discussion
A barrier that exists in creating inroads for political change and funding to support TB programs is the stigma and misconceptions surrounding TB.
“I have had people say to me ‘I didn’t know white people got TB,’” Schoeman said. “I also have a lot of people ask how I got it. It makes you realize that people do not understand TB.”
“I had a politician ask how we can get rid of the mosquitoes,” Majumdar said.
“The stigma and discrimination even surround health care workers,” 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. But we’re not immune to TB — it is everywhere. And there is need to recognize that white can get it, black can get. There is no respect to where you are from when it comes to TB.”
Campaigns can make a different in building awareness. In 2016, a #Unmask TB social media campaign aimed to start discussion in South Africa. And their health minister, Dr. Aaron Motsoaledi, continued this public advocacy to improve prevention and treatment of TB, including in engaging the public through YouTube videos.
But not all countries have the political will and support to get behind TB — and Daniels said both policies matched with funding are required to have a real impact.
Having clear goals and objectives
With confusion still surrounding TB among many politicians, advocates need to get specific on what governments need to do.
The TB Forum will be writing a high-level letter to Australian Prime Minister Malcolm Turnbull, directly asking for him to attend the high-level meeting in September, with specifics on what they want him to deliver. But the declarations that countries will be asked to support at the meeting also needs to be specific — and they are currently being circulated, with information being collected to find out what people on the ground say is needed.
“From the U.N. level, we know if we don’t have specific asks it’s just another blah, blah, blah — and we don’t want that,” Daniels said. “The drafts are getting specific on issues — we are talking about human rights for the first time. We know what to do in terms of service delivery, but it is the funding where we need more support.”
“By June, we will have the declaration and will be taking this message of this specificity to encourage high-level participation and commitments in September.”
The concern for Daniels is that the high-level meeting in September is an opportunity that is unlikely to come around again — and if governments don’t get behind TB politically and financially, it will take more than 150 years to eliminate it from the world.