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Fighting tuberculosis: the social disease

Fighting tuberculosis: the social disease

Georgia White is the Research and Policy Associate with AIDS-Free World. An experienced social justice advocate, she has a rich experience in areas such as justice, domestic violence and child welfare reforms, most recently having a role in the establishment of Australia’s Royal Commission on family violence. From Amsterdam, the Netherlands, where she was a delegate at the 22nd International AIDS Conference, she reflects with The Reporter’s Samuel Getachew on the work of AIDS-Free World, on her fact-finding mission on TB in a number of nations, on what she hopes to achieve on a new documentary released on the epidemic that is affecting the most vulnerable in the world and on the roles individuals can play to help turn the tide. Excerpts:

The Reporter: What does AIDS-Free World do?

Georgia White: AIDS-Free World is an international advocacy organization set up by co-directors Paula Donovan and Stephen Lewis in 2007. After both spending decades working in the UN system, AIDS-Free World was established to fight systemic inequalities that have allowed HIV to flourish like homophobia and violence against women and girls. AIDS-Free World uses high-level advocacy to press for change with key decision-makers, strategic communications to shine a spotlight on underreported stories, and impact litigation to counter discriminatory laws.

You were most recently in South Africa, India and Nunavut (the Northern part of Canada) on a fact-finding mission on tuberculosis with former United Nations HIV envoy for HIV/AIDS in Africa, Stephen Lewis. What did you find out?

Each jurisdiction had unique qualities, reflecting their culture, history and geography. In many ways, however, the factors surrounding the TB epidemics in each place were common: the social determinants of health, like housing, poverty, access to medicines and nutrition, came in to play strongly in each scenario. This shows how TB is a social disease; it afflicts the poorest and most marginalized people in our societies.

In Nunavut, Canada, Lewis observed how you were both impressed with the dedication and commitment of the people however he highlighted how there are not enough nurses trained in TB to facilitate the demands of the areas affected there. Were you shocked to find this shortcoming was happening in one of the richest nations in the world?

Yes, it was shocking to visit Canada, a very wealthy country, and learn that the Inuit people of Nunavut have been so marginalized. In terms of tuberculosis, the treatment and services available to Canadians in the South are not afforded to those who live in the North.  TB is 300 times more common for Inuit Canadians, compared with those born in the South. This disparity was tragically reflected in the death of an Inuit teen from Nunavut in 2017, which was diagnosed just hours before her death.

The Federal government has committed to tackle this inequality, but it will require a true long-term partnership with Inuit. Aluki Kotierk, the President of Nunavut Tunngavik Inc., told us about the significant communication barriers that exist, as most nurses and teachers do not speak the local language, Inuktitut. Broad systemic changes and investments are needed to priorities the training and employment of Inuk service providers and ensure that Inuktitut is taught to future generations. The President of Inuit Tapiriit Kanatami, Natan Obed, also speaks eloquently about the importance of maintaining language and culture for good health.  

In many areas, it is the elders, the grandmothers that are forced to take care of the kids. That is true with the AIDS epidemic in some of the developing world. I understand he also had an audience with various elders in Nunavut. How was the experience like?

The experience with elders in Nunavut was a privilege. We spoke with elders who had incredibly moving stories. Many told us of how they or their families, in the 1950s and 1960s, were sent away from Nunavut to distant sanatoria to be treated for TB. So many were separated from their families, their culture, and their language for years at a time – these painful memories still haunt them today. Elders also told us about the challenges they face today; inadequate housing, expensive food, unemployment were all issues they were grappling with, and many told us that they felt neglected by the Federal government.

These trips have yielded a 35 minutes documentary that was launched during the AIDS conference in the Netherlands. Tell me about it?

We have created a documentary film that profiles the epidemics of Multi-Drug Resistant TB (MDR-TB) in India and South Africa. Both countries are struggling to contain this disease and are dealing with other problems of poverty and inequality. What the film shows however is that the governments of each country have made drastically different choices in how they respond to this public health crisis. These choices centre on making life-saving drugs available for those who need them. The film explores the experience of people from both countries that are affected by MDR-TB, giving them the opportunity to tell their stories that have too often been ignored.

What do you hope it would ultimately achieve?

We hope this film can be used as a tool for advocacy, to transform the response to TB in to a social justice movement. Simply put, we want to demonstrate how political leadership can so dramatically change people’s lives. In the lead up to the United Nations High Level Meeting on TB this September in New York, we hope political leaders take notice and make the right choices for their people.

What is the long-term solution of TB in the world, considering we reside in a world where foreign aid fatigue is widespread and trade, not aid is the new mantra and how most western nations intend to engage in the world?

Multilateralism is at a turning point, and funding for TB and HIV has been consistently declining. Despite these troubling times, we must not be daunted. It was not at a United Nations meeting, but the G8 in 2000 that led to the creation of the Global Fund. It is almost impossible to think about financing for infectious diseases without the Global Fund now, and we should stay vigilant to the potential for a breakthrough for TB from multilateral meetings like these.  Especially as countries step in to the void of global leadership that United States President Trump has opened up – this can be a real opportunity.

Stephen Lewis is known for mobilizing, not just governments but individuals to help for a greater cause. What could individual people do to help change the narrative of TB in the world?

Many can encourage their elected representative to priorities investments in diagnosing, preventing and treating TB. They can also write to Prime Minister Justin Trudeau, to attend the United Nations High Level Meeting on TB in September and to demonstrate leadership at this meeting.

For instance, Canada’s Minister for Indigenous Services, Jane Philpott, has committed to end TB in Inuit Nunangat (homeland) by 2030. It is important that this domestic commitment is also reflected in Canada’s approach to tackling TB internationally. A funding announcement for investments in TB research and development by Canada’s Prime Minister would not only set a global precedent, those investments in new tools for diagnosis and treatment would directly benefit Inuit in Canada’s North.