Africa: Africa’s Fight for Equal Access to Rare Disease Treatment

Johannesburg — The Global Institute for Disease Elimination (GLIDE)  is the result of a long-standing partnership between His Highness Sheikh Mohamed bin Zayed Al Nahyan, President of the UAE, and the Bill and Melinda Gates Foundation, dating back to their pledge to fight diseases and put an end to polio in 2011. At the regional and national level, GLIDE partners with initiatives where they support and help accelerate programs to eliminate diseases.

As the world commemorates Rare Disease Day today (February 28), Simon Bland, CEO at GLIDE talks with AllAfrica’s Nontobeko Mlambo about GLIDE’s challenges and achievements in the elimination of these diseases, and how the use of integrated, cross-sectoral approaches brings rare diseases out of isolation and closer to global elimination.

Please tell us what GLIDE is and what you do.

The Global Institute for Disease Elimination, GLIDE, is a global health Institute based in Abu Dhabi, focused on accelerating the elimination of preventable infectious diseases of poverty: currently malaria, polio, lymphatic filariasis, and river blindness, by 2030 and beyond.

Founded in 2019 as the result of a long-standing collaboration between His Highness Sheikh Mohamed bin Zayed, President of the UAE, and the Bill & Melinda Gates Foundation, GLIDE works to elevate awareness and engagement, advance elimination strategies, and foster and scale innovation. We do this by collaborating with local and country partners and seeking ways in which we can engage catalytically to sustainably enhance integration and health systems.

What have been some of GLIDE’s challenges in eradicating rare diseases in Africa?

Like rare diseases, people at risk of or living with an NTD often suffer from a disability, loss of income, stigma, and discrimination. There is a lack of awareness about NTDs by the general public, they have a low profile in global public health, and are a low priority for governments. There is a need for more awareness and investment in NTDs, as well as research into new financing models and tools that will help us achieve elimination and eradication targets.

Of the African countries you work in, which are most affected by rare diseases and Neglected Tropical Diseases, and why do you think that is?

Africa accounts for almost 40% of the global burden of NTDs, with at least two NTDs in every country on the continent. The African countries with the highest burden of NTDs include Angola, Democratic Republic of Congo, Ethiopia, Mali, Mozambique, Nigeria, and Sudan.

These diseases often affect the most marginalized populations, and, once you get closer to elimination, you require more concentrated funding to reach the last mile, but given the low prevalence as you reach the end, it is hard for governments to make the investment case to put limited resources into NTDs instead of turning their attention to diseases with a much higher burden.

How does GLIDE bring awareness about rare diseases, especially in Rural or hard-to-reach areas in Africa?

We work with local partners to tell stories about efforts to eliminate NTDs, such as this online video series called ‘Eliminating Diseases’ and a new social media campaign highlighting efforts to eliminate diseases and the people who dedicate their lives to these efforts.

According to the World Health Organization, climate-related health emergencies are rising in Africa, accounting for more than half of public health events recorded in the region over the past two decades. What has GLIDE found to be linkages between disease elimination and climate?

According to a recent study, over half of the known human pathogenic diseases can be aggravated by climate change. The climate crisis threatens to undo the last fifty years of progress in development and poverty reduction and to further widen existing health inequalities between and within populations. We saw this in Pakistan, when devastating floods swept across the nation, resulting in increases in cholera, dengue, and malaria. A few months later, a similar story unfolded in Niger, as yet another country experienced deadly flooding.

We are likely to see infectious diseases at higher altitudes and latitudes than we have seen in our lifetime, in settings where health systems and healthcare providers are not prepared to respond to these kinds of diseases. Up until now, approaches to address health and climate emergencies have remained largely siloed. This is due in part to a lack of knowledge and guidance surrounding the health impact of climate change, with existing literature on this intersection insufficient.

It is with this in mind that GLIDE launched the second iteration of its disease elimination awards, the Falcon Awards for Disease Elimination – The Climate Edit – a global initiative that aims to expand the evidence base on the intersection of disease elimination and climate. Through the awards, GLIDE will provide catalytic support to researchers around the world to examine new and under-explored areas of the climate and infectious disease nexus.

Is GLIDE supporting any research or researchers exploring illnesses and deaths linked to climate change in Africa?

We hope to do this through the Climate Edit of our Falcon Awards for Disease Elimination, and the winning proposals will be announced in the coming months.

How did the Covid-19 pandemic affect your work to eliminate rare diseases?

COVID-19 exacerbated the deep inequalities in our societies and highlighted the urgent need to ensure equitable access and affordability of life-saving vaccines, diagnostics, and treatments. For GLIDE, which was launched just before the pandemic, COVID essentially grounded us and prevented us from learning by doing with partners. Despite the restrictions imposed by COVID, we were still able to begin several projects and initiatives, and we have now accelerated our pace. There were worries in the initial days of the pandemic that we would see progress set back by decades, but we are encouraged that the data seems to show efforts to eliminate NTDs were not as severely affected as we feared. However, we know that essential resources have been diverted from existing, longer-term initiatives to address the real and current threat of pandemics like COVID-19, and we must not lose sight of elimination targets.

How can African countries reinforce their health systems to adapt, be more resilient, and better cope with climate-linked emergencies?

We must first better understand the links between climate and health, and research like we hope to support through the Falcon Awards and the work of other partners will help inform policymakers. Stronger health systems that can both mitigate and quickly adapt to climate-linked emergencies will be better prepared to meet the needs of communities and countries.
Kenya, for example, is leading the way on this with a climate team within their Department of Health, ensuring that climate-related implications on health are considered at the policy level.

What are some of GLIDE’s proudest achievements in bringing awareness and fighting to eliminate rare diseases in Africa since its establishment?

The World Health Organization recently launched a new network to accelerate the elimination of onchocerciasis, or river blindness, called the Global Onchocerciasis Network for Elimination (GONE), which builds directly on recommendations made by GLIDE and Bridges to Development through one of its initiatives. To date, coordination between countries has been sporadic and lacked global convening, but with the GONE initiative, countries will be able to share lessons learned, address challenges, and facilitate progress toward eliminating onchocerciasis by 2030.

Please add anything that you think is important to note as the world commemorates Rare Disease Day

While over 1.7 billion people are affected by NTDs, these neglected diseases share many commonalities with rare diseases. They require targeted investment, more research, and increased awareness and visibility to raise their profile.