The global COVID-19 pandemic has plunged the medical community into a furious race to develop a vaccine – at an exponentially faster rate than any other illnesses. By early June over a hundred studies were being conducted to develop a vaccine, and pharmaceutical company Moderna is currently in talks for distribution clearance of its vaccine in the US. This has all taken place in less than two years after the discovery of COVID-19, yet other well-known illnesses like Ebola, HIV, and Tuberculosis are still decades away from such medical breakthroughs. And according to Kelly du Plessis, CEO of Rare Diseases South Africa – it all comes down to funding and resources.
To effectively develop a vaccine for any disease, countries allocate a percentage of their Gross Domestic Product (GDP) to healthcare. The US spent $7.8 trillion in 2017 (10% of GDP) on healthcare, while Canada in 2019 spent $264 billion, or 11.6% of the GDP, on its healthcare development. The situation in South Africa, where an estimated 7.7 million people are living with HIV, is very different – and somewhat bleak.
“We are relatively low down on the spectrum in terms of international GDP spend on healthcare, and we’re ranked about 11th in terms of publication. We have really good quality research, but when we compare it back to the expenditure that we have available for the research and development in the healthcare sector, we are very low on the scale,” explains du Plessis.
According to du Plessis, South Africa’s GDP allocation to healthcare research is under 0.3% – a far cry from where it should be. “Essentially, we would like to be on 2% of the GDP, so there is lots of room for improvement in that regard.”
The burning question then right now, is what this means for healthcare research, funding and resource allocation going forward. Through the fast-tracked development of the COVID-19 vaccine, du Plessis said that there is now a consistency on examining previously researched conditions. “(But) there is very little understanding as to how these budgets are allocated, particularly within the South African context.”
According to UNICEF’s Health Budget report, only 6.5% of South Africa’s total healthcare budget goes towards HIV and AIDS, Tuberculosis and Maternal and Child Health programmes.
“While we know that a lot of work is being done on HIV, TB and malaria, there are numerous other conditions which have a high impact on our patient population that don’t receive the necessary funding for the relevant research. This leaves those patients further marginalised by the conditions that they are impacted by,” du Plessis said.
Proportional GDP funding is only one aspect in developing effective treatments for HIV or TB, with skills, training and sector collaboration contributing towards a significant portion of the research.
South Africa has the skills to combat diseases, but du Plessis explains that the biggest hurdle in the sector is competing for the necessary funding for valuable research to continue. This creates a sector that is often unwilling to collaborate, especially between government entities, research departments and private companies.
Because of the competitive funding model, du Plessis adds, “many different research sectors focus and work in silos.” She however notes that there has been a slight shift in thinking lately, with various researchers realising the value in shared resources.
Du Plessis is hoping to see a breakdown in those silos and a continuous flow of income across the board. This will ensure that funding and research is easily accessible and will in turn help to improve inter-sector collaboration.
“From a skill perspective, we absolutely have the right people. So, it’s not necessarily a skills shortage, but more a collaboration and cohesive approach that is required.”
Africa as a continent has been relatively quiet about funding research for other diseases, but du Plessis stresses that it’s something patients need to change.
To ensure that Africa is not left behind, citizens need to voice their concerns and do whatever is necessary so that Africa receives the same level of healthcare that is accessible to many first-world countries.
“There is a definitive need from a governmental perspective to recognise that there are still other diseases that require research development and attention and for us as patients, we have to ensure that those diseases are prioritised by the government,” concludes du Plessis.
More about Rare Diseases South Africa
Rare Diseases South Africa, formerly the Rare Disease Society of South Africa, was founded in 2013 by Kelly du Plessis. Founded out of personal need after the diagnosis of Kelly’s son, it quickly became evident that there was a lack of support and awareness on rare diseases in South Africa. RDSSA was established as a voluntary association of persons and registered with the Department of Social Development (NPO 120-991). The intention of this association was to be a support group for rare disease patients and governed by the founding constitution.
In its short lifespan, RDSA went through phenomenal growth, with an ever-increasing patient base. In 2016, the decision was made to change the name from Rare Disease Society of South Africa to Rare Diseases South Africa, and to amend the voluntary association of persons to a registered NPC. The Board of Directors include individuals representing different sectors of the economy and people impacted by rare diseases. The organisation is currently managed on a day-to-day basis by a CEO, who is assisted by selected external consultants.
For more information on Rare Diseases South Africa visitwww.rarediseases.co.za
