Decolonizing Tuberculosis Care: A Perspective From The Global South On World TB Day
The author as a volunteer processing sputum samples for TB testing. Molecular-based diagnostic tools, such as the GeneXpert platform, have superseded sputum smear microscopy in terms of accuracy and are now very cost-effective for low- and middle-income countries.

Tuberculosis care is quintessentially colonial, even in 2021. While many countries have been emancipated from their colonizers, the heritage of the colonial mindset, culture and even entire economies is deeply embedded within high burden TB countries in the post-colonial era.  

A disease of poverty, TB has historically been terribly neglected. Although the number one infectious killer, raising funds for TB continued to be a challenge, as the disease failed to rank high as a priority once TB cases and mortality started to decline in wealthy countries. Colonizers deployed controversial strategies such as relegating infected people to sanatoria.  More recently, the DOTS (directly observed therapy, short-course) strategy was touted for its purported cost-effectiveness  – as agents of previous colonizers continued to drive the TB disease control agenda in poor economies.

From the pre-colonial to the post-colonial era, we continue to struggle for equitable partnerships with funders and global policy makers to truly make an impact.  This results in an ongoing divide between the global north and global south, where the south struggles to find a seat at the table to raise local TB voices for global change.  

All aspects of TB work have colonial roots, including research, technical assistance, monitoring programs, policy making, and service delivery.  These are all undergirded by choices, made by individuals not infrequently brandishing the agenda of the donors, rather than considering what is best for the recipients.  These choices manifest themselves in whom to fund, which groups to support, and which programs to criticize.  As we mark World TB Day, the objective of this piece is to reflect on and unravel some key areas through the lens of a TB implementer from a low-income setting. 

Disclosures: I am a physician, working in global public health representing the global south. I work in TB, interested mainly in multidrug-resistant forms of TB. I have survived ocular TB and it pains me that we continue to struggle to make progress in TB care.

National TB Strategies: A Question of Ownership

Reviewing TB case files in Afghanistan

No doubt, without external TB funding (through funders such as the Global Fund to Fight AIDS, Tuberculosis and Malaria), low-and-middle-income-countries (LMICs) would not have gotten as far as they have in TB prevention and control. However, for interventions and projects to succeed and demonstrate sustained value, the relationship between donors and implementers needs to be far more equitable.

For example, country strategic plans are still firmly guided by external stakeholders, funders and global TB policy makers; in most cases by the same groups which provide financing. In some LMICs, the national strategic plans are written by ‘external consultants.’  Both these options limit and deter local input, context and ownership. The lack of trust in local capacity smacks of a particular kind of professional arrogance that erodes the foundation of what should be a successful north-south partnership.  

I have had the benefit of sitting at both sides of the table. I have seen up close the harsh reality that leaves key implementers from low-income settings being excluded from participating in developing national strategic plans. To be fair, ensuring a higher level of inclusion is not the donor’s responsibility alone. Country level stakeholders – the government and influential local partners – need to ensure their people are represented at the table. Unfortunately, decades of dependence on external funding, fragmented local governance structures, and political agendas, relegate participatory engagement to a distant priority. Thus, a system that supports the objectives of a few perpetuates a bilateral colonial mindset.

TB Technical Assistance: Fostering & Relying Upon Local Expertise 

Joint external TB monitoring mission in Indonesia

We in the global south continue to self-sabotage local voices by not leveraging home-grown resources – thus  undermining our ability to build local capacity and sustain growth. 

For example, countries discriminate against their own experts (whom they could use at minimal to no cost). Instead, they are willing to pay exorbitant costs for technical assistance to TB experts/consultants from low TB burden, high income settings.

As a personal example, I have provided TB technical assistance to countries in Asia and Africa. In that same context, I also have tried to engage with the government of my own country of birth (Pakistan) to support and assist them at different times through the last decade. I assume it is my gender and my ‘brown’ Pakistani heritage that does not make me, and others like me, able enough advisors in comparison to the privileged, white males from the west (and expensive professionals at that). 

When these technical experts from the global north arrive in poor high burden TB countries to advise on all aspects of our programmes- how to diagnose patients, what clinical protocols to use, how to design regimens- the relationship is too often that of a master and underling, rather than that of professional colleagues.

I have had the unfortunate personal experiences of listening to an ‘expert’ criticize my clinical colleagues at local NGOs in Asia, in areas we knew far more than them.  In one case, a foreign expert’s opinion on the TB program was to insist that this high-TB burden country use smear microscopy (an insensitive test) as a primary diagnostic test, when we have better and more sensitive, rapid diagnostic technology (GeneXpert) available. His lack of understanding about the relatively low cost of contemporary methods when applied nationally would lead to an outmoded and possibly dangerous recommendation.

One would need several chapters, if not a book, to compile such examples and challenges implementers have to face.  It is obvious that consultants from high-income countries do not make the same suggestions in their own high-resource settings.  Far from challenging this behaviour, however, we generally accept it.  I am outraged at the way my own colleagues in the south listen to this bullying behaviour without objection- even welcoming these pearls of foreign wisdom while paying for the pleasure of receiving them.  And, I am beyond concerned at the global health actors responsible for employing and perpetuating this kind of behaviour.

TB Research: A Mixed Bag With No Vaccine Yet In Sight

Field visit at a TB clinic Karachi, Pakistan

Over the last year, $US 5 billion has been spent to develop COVID-19 vaccines. Although heartening to see manufacturers, international funders, academics and researchers collaborating to fight a pandemic, it is frightening to realize that we have never prioritized a new TB vaccine, ostensibly due to limited funding. In fact, there is just one- the BCG vaccine– now a century old. This is a reflection of how the world functions.  As we look back at innovations in diagnostics and treatment, conditions never truly received attention until (and if) they hit the west.  HIV and COVID-19 are just two of the examples.

Unfortunately, TB is a disease of the poor, so if one need funds for research, monies are not easy to locate.  Compounding this overall scarcity, academics and researchers from the global north generally have easier access to whatever research funding is available.

Even so, in the research arena, at least, disease colonialism is less on display.  I recognize the TB researchers based in the global north who have helped their colleagues in the south by leveraging their position for good: providing visibility to their colleagues and collaboratively generating evidence to inform policy.  I have known some wonderful academics in the north who collaborate with local implementers, supporting them and valuing their contribution towards research. There may be still a lot of work to bring about a fully equitable relationship in TB research, but we at least have a model upon which we can build. 

However, while there is improved collaboration at the level of the individual researchers – and even between individual academic institutions – the donor organisations’ mindset has undermined, at times, this fundamentally sound model. The big organizations have pushed TB research towards priorities that appear to be innovative but are in fact shortsighted.  The desires of funders to obtain quick results has led to misplaced priorities – such as focusing on models for scale-up of new TB diagnostics, which may leave other areas of research into TB treatment (and more importantly MDR-TB treatment) negligently under-funded.

Even here, donors use colonial-style tactics that create divisions between collaborators. These may include micromanagement, threats to pull out funding, and as discussed elsewhere, use of a monitoring and evaluation methodology under which longer-term, locally-owned programs are doomed to fail.

For example, I have observed individuals from international donor organisations deciding the fate of grants by performing TB research audits without appropriate technical or research qualifications. As another example, when a longer-term investment is necessary to see results, donors  will sometimes utilise these audits to justify ‘cutting their losses’, because they cannot openly object to the value of the research.

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The above are a few personal experiences and while they highlight my own frustration with TB care, I hope that they will continue an important discussion. I wish to motivate people to ask for more transparency, raise their collective voices, and advocate on behalf of the global south. And, not just humbly request a seat at the table but demand restructuring of a system that benefits a few.  A sustainable, mutually respectful and equitable path forward dictates a new way of doing business.

Paul Farmer said it well: “The idea that some lives matter less is the root of all that is wrong in this world.”  

Dr Uzma Khan

Uzma Khan is a physician and public health professional working in TB control in LMICs. A native of Pakistan and currently residing in Canada, Khan has extensive experience in overseeing, implementing and conducting MDR-TB research, and has provided technical assistance to TB programs in Asia and Africa. She holds a medical degree as well as a Masters in Epidemiology from the Harvard School of Public Health. Her interests are health equity, advocacy and policy especially in the time of COVID-19. She tweets @imuzk

 

Image Credits: Uzma Khan.

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