Innovation is key to #endTB: A disease riddled with myths

Roger Paul Kamugasha, CNS Correspondent, Uganda
Photo credit: Roger Paul, Uganda
Tuberculosis (TB) — the silent killer — has found its place on the agenda of one of the forthcoming United Nations High Level Meetings (UNHLM on TB), for the first time in the annals of history. This has been made possible through the combined efforts of the Stop TB Partnership, Global Fund to Fight AIDS, TB and Malaria (The Global Fund), United Nations, G-20 nations, UNITAID, Russian Government, media, TB advocates who include TB survivors, celebrities who have spearheaded the campaign against TB, religious institutions and international/ regional/ national development partners.

Without innovation we cannot end TB

My concerns are intertwined with WHO’s End TB Strategy whose clarion call to achieve by 2035 a 95% reduction in TB deaths and 90% reduction in TB incidence (as compared with 2015), is based on the three pillars of (i) Integrated, patient centric care and prevention (ii) Bold policies and supportive systems and (iii) Intensified research and innovation.

TB is an ancient disease, and if we have to wipe it from the face of the earth we will have to think anew, rather than merely offer a patchworked and repackaged strategy. Without innovation, we will neither be able to meet the sustainable development goals nor the End TB targets. We cannot expect different results by doing things the same old way. It has now been 136 years since Dr Robert Koch, a German physician, presented his discovery of Mycobacterium tuberculosis, the bacterium that causes TB, on March 24, 1882- a date that has been earmarked for observing World TB Day every year. Unfortunately, TB still continues to kill people. As per WHO’s Global TB Report of 2017, there were an estimated 1.7 million TB deaths and 10.4 million people became sick with the disease globally in 2016.

ACSM is integral to the fight against TB

I find it pertinent to view the history of TB advocacy from the global perspective as a person who has been at the forefront of TB advocacy since 2004 after TB and HIV claimed the life of my wife and son 14 years ago. Initially, advocacy, communication and social mobilization (ACSM), which was then regarded as IEC-information education and communication, was faced with a top-bottom fallacy that categorized ACSM /IEC activities as having no indicators, and therefore not measurable, and hence a waste of resources. This stiff resistance, engrossed in the popular myth that IEC activities were indeed not measurable, led to cumulative ignorance about TB among populations across the globe.

No wonder then that minimal support went for IEC activities. The need to communicate and educate people about the symptoms of the disease, importance of diagnosis, availability of free services in public health systems, need for treatment adherence and consequences of being lost to follow up, was not given the attention it deserved as a tool to achieve global WHO targets.  One serious fall out of this was that many patients opted out of treatment after the initial phase, leading to resistant strains that gave birth to multi–drug resistant TB (MDR-TB).

This gloomy scenario continued for decades until 2013 when the Global Fund’s new funding model took shape. At this stage US based PATH (Programme for Appropriate Technology in Health) initiated an ACSM curriculum, which provided evidence that ACSM is indeed measurable, has indicators and can be monitored and evaluated. I am proud to have been one of the first participants in this global ACSM training held in Washington DC. This curriculum became a game changer for the global TB landscape. Continued gratitude goes to development partners who have invested in activities that have made advocacy a relevant tool in ending TB and HIV/AIDS in globally.

During the last decade, many declarations to end TB and HIV/AIDS have been made—like the Abuja Declaration of 2001, the Zero Declaration of 2012 and the Civil Society ACT Declaration on TB of 2013 in Washington DC, to mention a few of them--but none were able to shift the paradigm other than merely adding a brick to the old TB wall.

Tangible efforts started with the Barcelona Declaration on TB in 2014, which was endorsed by Members of Parliament, followed by the G-20 Declaration of 2017 to combat Anti-Microbial Resistance and TB, and the most recent Moscow Declaration of 2017 that called for multi-sectoral action at global and regional levels to end TB.

Kudos to all these efforts that have raised the profile of a neglected killer disease that knows no borders. TB advocacy, spearheaded by global, regional and national stakeholders, has not only led to the call for political commitment to end TB but has also helped to make TB the agenda for a UN High Level Meeting (UN HLM on TB) for the first time in history.

I call upon all TB stakeholders globally to be mindful in ensuring a strategy shift in order to end TB. This would require innovation that focuses on finding the missing TB cases, changing behavioral patterns, especially for improving adherence to second line drugs, and building partnerships that would strengthen efforts to end the TB epidemic.

UNHLM on TB could be the watershed for TB

While we applaud the efforts of the medical fraternity for working relentlessly towards ending TB, but as we approach the UNHLM on TB in New York, it is time for all of us to reiterate that ACSM is an integral component of the global TB fight, and that we need to increase investments in advocacy from the global to the grass roots level by engaging communities at decentralized level for advocacy and participation in sub-national planning and budgeting-- a process that would feed into policy formulation at the centralized level and increase political commitment and sustainability.

We need to change the behaviour of beneficiaries; we need to communicate, mobilize and lobby for leadership commitment, build human resource capacity, have heads of states as key influencers, and strengthen linkages between the private sector and civil society. Civil Society is a key partner of governments and has played an unmatched role in spearheading advocacy through the Global Stop TB Partnership in Geneva. The global TB community envisages a political declaration at the UNHLM on TB that is inclusive, ambitious and contains specific targets as described in the UNHLM ‘Key Tasks’, which are priority actions that must be taken by governments to accelerate progress towards achieving the goal of ending TB.

In June this year, the President of the General Assembly had convened an interactive civil society hearing that underscored the commitment of civil society at the highest level and emphasized the need for a political declaration that goes beyond just words and actually translates into action.

It is high time for political leaderships to also address the social enablers of the disease including poverty, gender inequality, child neglect, domestic violence, in addition to building multi sectoral linkages. At the same time civil society and the private health sector must strengthen linkages and harmonize their TB control interventions. Let us focus on innovation and make ending TB by 2035 a reality.

Roger Paul Kamugasha, CNS (Citizen News Service)
28 August 2018

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