Gauteng Health MEC backs SA hero Joost in fight against MND
Through public private partnership Gauteng Department of Health and Chris Hani Baragwanath Academic Hospital (CHBAH) gave recognition to their Motor Neuron Disease (MND) clinic as a center of excellence to intensify its health care services. This is in response to a desperate need to offer special care to patients who are suffering from this debilitating progressive disease, which in many instances ends up paralyzing patients, often described as patients being trapped in their own bodies.
Rugby legend, former Springbok scrumhalf Joost van der Westhuizen succumbed to the disease in Febuary 2017. Gauteng’s MEC for Health, Dr Gwen Ramokgopa, highlighted the plight of the largely forgotten sufferers of MND and added her admiration to the late Joost van der Westhuizen’s fight against the disease and his efforts to raise public awareness, particularly those from disadvantaged and resource constrained patients.
“Patients now have regular access to therapy across a range of disciplines, including medical care, physiotherapy, occupational therapy, speech therapy and social workers,” said MEC Ramokgopa.
The Clinic is a joint collaboration between a number of stakeholders, including 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 Groupings and Africa’s largest Pharmaceutical Manufacturer, Aspen Pharmacare.
“Importantly, this programme illustrates the role that the private sector can play to partner with government in areas that not only ensures the future sustainability of our country, but also invests in improving the quality of life for all citizens”, added MEC Ramokgopa.
A Big Dream…
Inspired by a 2013 tour of international centres and the work being done around MND overseas, Joost’s ultimate goal was to establish a purpose-built centre of excellence which will provide patients with world-class care, while driving research across the group of neurodegenerative diseases.
The Joost van der Westhuizen Centre for Neurodegeneration
The once-robust Springbok rugby hero Joost experienced first-hand how the disease progressively destroys motor neurons, the cells that control essential voluntary muscle activity such as speaking, walking, breathing and swallowing.
In mid-2014, the veteran star and MND sufferer 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.
With the backing of the Gauteng Department of Health and
massive support from the MEC the CHBAH team, spearheaded by Professor Andre Mochan, has taken up the challenge in the quest for a cure.
In raising Joost’s dream from vision to reality, the Department has taken the additional steps of initiating a PHD programme, providing supplies and transport for patients from anywhere in the province to the clinic. Aspen Pharmacare has committed to supporting the PhD programme.
With the assistance of Aspen Pharmacare, the team will work towards improving access to care for MND patients, furthering South African research efforts and building relationships with international researchers with a view to establishing clinical trials in South Africa.
Stavros Nicolaou, Aspen Pharmacare Senior Executive stated that, “MND and other associated neurodegenerative disorders, such as ALS are amongst the most progressively debilitating medical conditions known to humanity, with patients and their families enduring tremendous hardship. This initiative is a good example of how collective efforts and focus of the private and public sectors, can deliver world class solutions and make a meaningful difference to patients and the healthcare system at large.”
It’s a bold step towards the end goal of creating a world-class centre of excellence housed in its own building and dedicated to the care, research and well-being of MND patients.
Shining the light on the darkness that is MND
Although the numbers of patients currently fighting the disease are relatively low now, experts predict that we are likely to see a steady increase in MND patients seeking medical care.
By extrapolating international figures, it’s possible to predict that there may be between 750 and 1500 new cases of MND diagnosed in South Africa every year, with between 4 500 and 9 000 people living with the disease at any time.
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.
This undertaking between the Gauteng DoH and Aspen, plans to address to these issues, and bring much-needed relief to people who need it most.
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.
Joost knew that his dream for an international centre may seem big, but he was a man who was accustomed to accomplishing great things and saw his rugby days as a training field for his final fight. “In the beginning you go through all the emotions and you ask, ‘Why me?’ It’s quite simple, ‘Why not me?’ If I have to go through this to help future generations, why not me?” he said. “There are two things that people take for granted every day: Time and health. And, when you lose that, that’s when you wake up.”
The motor neuron diseases (MNDs) are a group of progressive neurological disorders that destroy motor neurons, the cells that control essential voluntary muscle activity such as speaking, walking, breathing, and swallowing.
When there are disruptions in the signals between the upper motor neurons and the lower motor neurons, muscles develop stiffness, movements become slow and effortful, and tendon reflexes such as knee and ankle jerks become overactive. Over time, the ability to control voluntary movement can be lost.