Going viral to end the neglect: A step in the right direction, but where to next?

Neglected (adj) /nɪˈɡlɛktɪd/: suffering a lack of proper care; not receiving proper attention; disregarded.

So, how is it a group of 17 disabling, communicable diseases that are endemic amongst those living in poverty constitute this category of neglected tropical diseases (NTDs)? How did they fall into this hole of neglect? And, more importantly, how can we dig them out?

In the year 2000, following the Millennium Summit of the United Nations, the Millennium Declaration and its 8 Millennium Development Goals (MDGs) were developed with the ultimate objective to address and eradicate poverty in its many facets by 2015. They provided a platform for large-scale donor support and had a prominent influence on Global Health policy over the next decade (Hotez, 2011). The goal directly relating to NTDs was MDG 6: To combat AIDS, malaria, and other diseases, however, NTDs fell under the umbrella term “other diseases”, denying them the attention they deserved and needed. Awareness and subsequent progress was made in the spheres of HIV/AIDS and malaria with the establishment of the Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM), the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), and the U.S. President’s Malaria Initiative, in addition to novel research and advocacy programs (Hotez, 2011). However the “other diseases” remained nameless and were largely left out of the spotlight and excitement, and thus left behind.

mdgs

(Source: The United Nations)

The idea of NTDs falling under this umbrella term “other diseases” is now obsolete. The first global effort to combat NTDs as an integrated framework was made in 2006 with the launch of The Global Network for Neglected Tropical Diseases at the Clinton Global Initiative Annual Meeting (Smith, 2013). The World Health Organisation (WHO) also played a crucial role in this progression, issuing their first report on NTDs in 2010- Working to Overcome the Global Impact of Neglected Tropical Diseases. The report recognised the role NTDs play in the weakening of impoverished populations, the perpetuation of cycles of poverty, and the impediment of achieving other MDGs due to synergies between goals. These are just examples of monumental events that have been instrumental in positioning NTDs in both the political and the public eye. Other campaigns such as END7 have effectively utilised forums, such as social media, to appeal to an even broader audience. Their video How to Shock a Celebrity has received over 300 000 views.

7-days-of-end7-shocker

(Source: END7 Campaign via Stirling Media)

The increased advocacy and awareness of NTDs is the first step in a multifaceted and intertwining network of developments that are absolutely necessary to treat and eradicate these diseases. More effort and more action are still desperately required in the areas of financial resources, distribution of resources, diagnostics and treatment. If we consider that NTDs affect almost 20% of the entire population and almost 50% of the impoverished population, yet receive only 0.6% of the Official Development Assistance for Health (Smith, 2013), we can certainly see where this “neglected” tag stems from. This becomes even more significant, and quite frankly astounding, when we acknowledge that 42.1% of the same budget is dedicated to HIV/AIDs, malaria and tuberculosis (Rafati, 2015) even though estimates for the number of Disability Adjusted Life Years (DALYs) attributed to NTDs place them at best on par with those attributed to tuberculosis, and at worst in excess of those attributed to HIV/AIDs (WHO, 2004). We must appeal to the business sector and ensure that the bleak effect of NTDs on productivity and profit are well understood. A similar strategy was implemented in South Africa regarding HIV/AIDs. The economic argument for HIV treatment was well received with companies sponsoring anti-retroviral treatment programs for their employees (Lee, 2013).

There is currently an estimated USD $220 million global annual funding gap for treating NTDs (Zwane, 2015). Funding provides the vessel for evolution in research and development (R&D); without sufficient amounts we can’t make the essential voyage to new territory in terms of diagnostics, which present a significant challenge in themselves due to a lack of efficacy in remote areas, invasiveness and inaccessibility (Kessel, 2014). Promoting the economic benefit of accurate diagnoses and treatment must become a priority in an effort to educate existing major donors and attract new donors. There is no proper health intervention without accurate diagnosis. There is no accurate diagnosis and subsequent treatment without sufficient resources.

There is no denying that the process of increasing funding allocated to the prevention, diagnosis, and treatment of NTDs is not one that will happen overnight. So in the meantime, we must make better use of the resources we do already have, in particular the drugs used for treatment. The NTD drug supply chains currently face significant challenges and will continue to face these challenges if we don’t take action. These including a lack of understanding of NTD supply needs amongst both central and district staff; ad hoc supply chain solutions; duplicative supply chains; and incomplete data (John Snow Inc, 2015). Such challenges precipitate stock outs, disrupted supply chains, increases in cost, ineffective planning, supply imbalances, and ultimately wastage with the return of unused drugs (John Snow Inc, 2015). If we were to provide easier access to supply chain expertise via Regional Technical Access Centres we could improve human capacity at the community level. If we were to implement standard operating procedures, we could strengthen planning, management and budgeting for NTD mass drug administration. Finally, if we maintained a greater focus on strengthening the logistics management system and introduced performance based incentives, we could see the effective, high-performing drug supply chains we need. There will be no control and elimination of NTDs without a full supply of NTD drugs and the capacity to distribute them. Let’s implement these strategies and achieve our short term and long term NTD goals for the sake of those with no voice.

BY JEMMA SAXTON
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