The new Motor Neuron Disease clinic at Chris Hani is an invaluable addition to MND sufferers from disadvantaged backgrounds. It will enable MND patients from resource-constrained areas to access healthcare in a public facility and will enable valuable research initiatives.
The Gauteng Department of Health, in collaboration with the Joost van der Westhuizen Centre for Neurodegeneration, has opened a Motor Neuron Disease (MND) clinic at Chris Hani Baragwanath Academic Hospital. This is in response to a desperate need to offer special care to patients who are suffering from this debilitating disease, which in many instances ends up in complete paralysis.
Former Springbok scrumhalf Joost van der Westhuizen succumbed to the disease in February 2017. The Gauteng MEC for Health, Dr Gwen Ramokgopa, highlighted the plight of the largely forgotten sufferers of MND at the event and noted her admiration to the late Joost van der Westhuizen’s fight against the disease and his efforts to raise public awareness of sufferers, particularly those from disadvantaged backgrounds.
“MND patients now have regular access to therapy across a range of disciplines, including medical care, physiotherapy, occupational therapy, speech therapy and social workers,” Ramokgopa said.
The clinic is a joint collaboration between a the provincial Department of Health, Chris Hani Baragwanath Academic Hospital, Wits University Medical School, The Joost van der Westhuizen Neurodegeneration Foundation (JCN), various patient support groups and Aspen Pharmacare.
Inspired by a 2013 tour of international centres and the work being done around MND overseas, Joost dreamed of establishing a purpose-built centre of excellence which will provide patients with world-class care, while driving research across the group of neurodegenerative diseases.
In mid-2014, the veteran star established the Joost van der Westhuizen Centre for Neurodegeneration, a non-profit organisation dedicated to improving access to care for MND patients, supporting South African research efforts, and building relationships with international institutions. In implementing Joost’s vision, the DoH has initiated a programme to provide supplies and transport for patients from anywhere in the province to the clinic.
With the South African healthcare system facing a quadruple burden of disease in the form of HIV, tuberculosis, strokes and heart disease, rare diseases like MND are seen as less of a priority in terms of research and specialised units. This means that patients often have to travel long distances to get expert care, at great risk to their already-fragile health. The real tragedy of MND, though, is felt most acutely in impoverished communities: in these outlying areas residents lack understanding of the illness and many patients find themselves outcast. They are left at the mercy of public transport systems that don’t provide wheelchair access to get to health care centres. In the more advanced cases they face double jeopardy – the lack of access to electricity means that some patients aren’t able to make use of breathing equipment.
Nicolaou added, “Whilst MND is a poorly understood condition and one that requires significant further effort, there are a number of practical steps that can be taken to materially improve the quality of life of patients, particularly those that are resource constrained. This initiative will make a significant difference to those patients. Although Aspen is not directly involved in the MND therapeutic area, it has a number of neuroscience products, which offer a broad range of therapeutic solution and this initiative is supportive of Aspen’s neuroscientific presence.”
Another key aspect of the MEC’s drive is to foster relationships with international partners with a view to bolstering much-needed research and establish clinical trials in South Africa.