Tag: medical conference

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Rare-X 2024 a Beacon of Hope for Those Living with Rare Diseases

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Amongst the intricacies of South Africa’s healthcare landscape, a silent but significant challenge lurks – the prevalence of rare diseases. Behind the curtain of mainstream medical discourse, millions grapple with the complexities of these often overlooked conditions, a stark reality often overshadowed by the glare of more prevalent health concerns. 

With more than 7000 identified rare diseases to date, they affect as many as 4.2 million South Africans, of which 50 – 70% are children1. These conditions are more prevalent than predicted, each posing unique and often debilitating challenges for patients and families alike. 

With 29 February commemorated as Rare Diseases Day, Rare Diseases South Africa (RDSA), is hosting its third biennial rare diseases conference, Rare-X 2024, at the Indaba Hotel in Fourways, from 14 to 17 February. 

More than just a conference, Rare-X 2024 will focus on patient advocacy, education, policy reform, and improving equitable access to ensure better outcomes and support for individuals living with rare diseases.

As the first in-person conference since the COVID-19 pandemic, the event brings together patients, policymakers, academics, government and pharmaceutical companies to discuss the plight of rare diseases and find collaborative ways to improve patients’ lives and treatment efforts. 

The conference will comprise several activities, including keynote speeches by renowned experts in rare diseases; interactive panel discussions; workshops and training sessions; scientific presentations; networking opportunities and policy roundtables. 

Some of the renowned speakers to share their insights and global developments on rare diseases include Prof Alex van den Heever, Chair of Social Security Systems Administration and Management Studies at the Wits School of Governance; Professor Fatima Suleman, Professor in the School of Health Sciences at the University of KwaZulu-Natal; and Professor Chris Hendriksz, Global Clinical Development Lead for Rare Diseases at Nestle Health Science, amongst others. Bringing a wealth of practical experience following his work with health professionals, will be traditional health practitioners (THPs), Mr Elliot Makhathini and Dr Conradie from North-West University’s Centre for Human Metabolomics, to name a few.

A rare disease relates to a condition that is considered rare when it affects one person in 20002. Currently, South Africa does not have its own definition of a rare disease, which is one of the major issues that need to be addressed by the government3.

As a patient-focused non-profit organisation, RDSA was launched in 2013 by CEO and Rare-X Director, Kelly du Plessis. The mother of a child with a rare condition, du Plessis realised the dire need for support for a highly under-acknowledged community, with the organisation advocating that people living with rare diseases and congenital disorders experience greater recognition, support, improved health services, and overall, a better quality of life. 

“Despite the need for increased representation, the rare diseases community remains vulnerable from a medical and policy perspective,” says du Plessis. “As part of our mandate, RDSA brings together international best practice and local medical innovation, driving a collective voice and playing a fundamental role in bridging the gap between vulnerable communities and medical advancement.”

To date, RDSA has successfully launched initiatives that have positively impacted the lives of over 6500 patients including engaging with various governmental departments, organs of state, industry players and strategic stakeholders to raise awareness and move rare disease policy forward.

For more information on the Rare-X conference, kindly visit www.rare-x.co.za 

References:

1. Marhebe, HL. Introducing the South African Rare Diseases Access Initiative. SAMJ. 2023;113(8).

2. Reserved IUA. Orphanet: About rare diseases [Internet]. [cited 2024 Feb 2]. Available from: https://www.orpha.net/consor/cgi-bin/Education_AboutRareDiseases.php?lng=EN

3. FAQs [Internet]. Rare Diseases SA. [cited 2024 Feb 2]. Available from: https://www.rarediseases.co.za/faqs

Categories : Cardiovascular Disease Metabolic DisordersTags : Leave a comment

Collaboration Key to Address SA’s Fatal, Diabetes-linked Cardiovascular Disease Burden

On By ModernMedia
Photo by Hush Naidoo on Unsplash

Only concerted multi-disciplinary collaboration and research will stem the tide of diabetes and diabetes-linked cardiovascular disease (CVD), the latter currently the leading cause of death locally and worldwide, claiming 17.9 million lives annually1.

This was the consensus among some of the world’s leading cardiologists and researchers gathered at the SA Heart Association’s annual congress aptly themed: ‘The Cardiac Collaboration,’ which took place at the Sandton Convention Centre in Johannesburg from 26-29 October this year.

Globally, CVD takes more lives than TB, HIV and malaria combined, while 215 South Africans are killed by CVD every day – with 80% of CVD and strokes being preventable.1,2 The prevalence of diabetes has also increased in South Africa, from 4.5% in 2010 to 12.7% in 2019. Of the 4.58 million people aged 20-79 years who were estimated to have diabetes in 2019, 52.4% were undiagnosed.3

With diabetes being a key driver of CVD – especially in Africa (with limited access to novel drugs and the prevalence of sugar-rich, poverty-driven lifestyles), the mutual consensus at this year’s congress was that collaboration is key.

Dr Zaheer Bayat, Chairperson of the Society for Endocrinology, Metabolism and Diabetes of South Africa (SEMDSA), told delegates that endocrinologists and cardiologists would have to work together to improve outcomes for diabetic patients, 30% of whom suffered cardiovascular events. He warned that a 134% increase of people living with diabetes was predicted over the next two decades, translating into a dramatic surge in chronic kidney disease, cardiovascular disease, blindness, and amputations.

Dr Bayat said he intends appealing for mass diabetes screening to find the 52% of people whom researchers estimate are undiagnosed. Ideally, this should be followed by access to cheaply acquired, effective new glucose-lowering drugs.

“The reality is that this country cannot afford all the new treatments for everyone – not private funders, not government. So, drugs are not really a solution – the best solution is to change lifestyle and prevent disease in the first place,” said Dr Bayat.

“We’re here to fight for our patients, not our pockets. Can we afford to have 52% of our patients not knowing they’re diabetic? People who should be contributing to our economy are living with diabetes and eventually dying,” he asserted.

Dr Bayat also said that globally, First World countries such as the USA and Sweden are reducing myocardial infarctions, strokes, and amputations, because they’re doing all the right things together. This included adopting a healthy lifestyle, effective management of sugar, blood pressure and cholesterol and smoking cessation.

“However, here in South Africa with private healthcare representing 15% of healthcare delivery but consuming 50% of the spend and the public sector representing 85% of the population and consuming the other half – we’re not doing nearly as well. With only 200 cardiologists in the country (one per 190 000 population), and even less nephrologists, we need to join together and change the trajectory of diabetes. We must work together to reduce morbidity and mortality,” said Dr Bayat.

According to the SA Heart Association, this graphically illustrates the importance of a multi-disciplinary approach, the very reason why the conference was called ‘The Cardiac Collaboration.’

The SA Heart Association has already begun forging formal ties with other academic societies and next year, it hopes to join and host joint sessions with collaborative meetings to connect a multidisciplinary team in order to achieve a well-rounded balance of care.

References:

  1. https://www.heartfoundation.co.za/wp-content/uploads/2017/10/CVD-Stats-Reference-Document-2016-FOR-MEDIA-1.pdf.
  2. https://world-heart-federation.org/what-we-do/prevention/#:~:text=An%20estimated%2080%25%20of%20cardiovascular,and%20%E2%80%9Cknowing%20your%20numbers%E2%80%9D.
  3. International Diabetes Federation. IDF Diabetes Atlas.10th ed. International Diabetes Federation; Brussels, Belgium: 2021. [Google Scholar] (primary). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10218408/#:~:text=The%20prevalence%20of%20diabetes%20mellitus,%25%20were%20undiagnosed%20%5B5%5D. (secondary).
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GEMS Hosts its 14th Annual Symposium, Bringing Together Key Healthcare Industry Stakeholders and Policymakers

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The Government Employees Medical Scheme (GEMS) will, on November 2nd, 2023, host its 14th annual GEMS Symposium under the theme: “Advancing Health Equity by Addressing the Social Determinants of Health”. Experts, thought leaders and specialists in healthcare will engage in discussions towards a better understanding of the societal determinants of health in South Africa. 

For this hybrid event, delegates will attend both in person at Sandton and virtually.

Dr Moloabi states that the “Symposium is an important event on the GEMS calendar, providing a platform for academic, clinical, government and business minds to discuss what social issues are at play in determining the nation’s health status and how to improvements in health equity can be realized”. Moreover, he also highlights the need to remove practical obstacles that make us an unequal society if we are to achieve collaborative and cohesive solutions to our healthcare challenges.”

Speakers will include: 

  • Dr Ingrid Pooe – Chief Operations Officer, Government Employees Medical Scheme (GEMS),
  • Dr Sebayitseng Millicent Hlatshwayo – Chairperson, Government Employees Medical Scheme (GEMS),
  • Dr Chana Pilane-Majake – Deputy Minister of Public Service and Administration (DPSA),
  • Professor Mcebisi Ndletyana – Professor of Political Science, Department of Politics and International Relations, University of Johannesburg,
  • Dr Selaelo Mametja – Chief Research Officer, Government Employees Medical Scheme (GEMS),
  • Mr Barry Childs – Joint Chief Executive Officer Insight Actuaries & Consultants,
  • Dr Vuyo Gqola – Chief Healthcare Officer, Government Employees Medical Scheme (GEMS),
  • Mr Louis Botha – Chief Executive Officer, Health Quality Assessment (HQA),
  • Ms Yoliswa Makhasi – Director General, Department of Public Service and Administration (DPSA),
  • Mr Frikkie de Bruin- General Secretary, Public Service Coordinating Bargaining Council (PSCBC),
  • Dr Pali Lehohla – Director of Economic Modelling Academy (EMA), 
  • and
  • GEMS Principal Officer Dr Stanley Moloabi.

Dr Pilane-Majake, the Deputy Minister for the Department of Public Service and Administration (DPSA) will deliver the keynote address, elucidating, amongst other insights, the crucial relationship between the DPSA as employer and GEMS as an implementor of a mandate to ensure access to health and wellness by government employees and thus contributing towards the attainment of the ideals of Universal Healthcare Coverage.

Media personality Ms. Faith Mangope will facilitate conversations as the panel covers key discussion points, including:

  • Achieving the Sustainable Development Agenda 2030.
  • Beyond Healthcare: Addressing health equity and social determinants of health.
  • Policy Interventions for Addressing Social Determinants of Health: Lessons and best practices.
  • Value-Based Care and Social Determinants of Health: Integrating social context into healthcare delivery.
  • Advancing health equity by addressing social determinants of health; and
  • Exploring the interplay between healthcare quality and social determinants.

At GEMS, we are dedicated to fulfilling our responsibilities towards our members and the people of South Africa. The Symposium is a testament to our commitment to Universal Healthcare Coverage, and we are eagerly anticipating a productive outcome that will be memorable and provide an insightful experience for all involved, Dr. Moloabi” concludes. 

To learn more about the GEMS Symposium, visit www.symposium.gems.gov.za. 

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Sharing Health Data Saves Lives: Showcasing the CareConnect Health Information Exchange in Action in SA

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In a nation where healthcare has been marred by disjointed systems and fragmented care, South Africa’s healthcare organisations are making strides to change this narrative.

South Africa’s health journey has faced challenges with siloed information, often paper-based systems, and a lack of information flow between health professionals, funders and health facilities. These barriers have significantly impacted the cost, quality, and access to healthcare for patients. In response, the Competition Commission’s Health Market Inquiry (HMI) panel spotlighted the urgent need for solutions that bolster transparency, coordination, and innovation.

South Africa’s first industry-wide health information exchange, CareConnect HIE, is a game-changing initiative and the brainchild of major hospital groups, including Life Healthcare, Mediclinic, and Netcare, coupled with leading medical scheme administrators like Discovery Health, Medscheme, and Momentum Health. Their shared vision? An interoperable health system that breaks historic barriers, promoting enhanced patient care, quality, and efficiency. This transformative approach to healthcare was showcased in action at an event in Sandton today, providing attendees a firsthand look at the potential of HIE in South Africa.

Since its launch in August 2022, CareConnect HIE has rapidly advanced, with over 5.2 million consented lives now integrated into the system. However, the true value – from population health benefits to progressive funding and health delivery models – exponentially increases as the amount of data on the exchange grows.  Therefore, the aim of the HIE is to be the hub of exchange and the single integration point for ALL health data – from both the public sector and the private sector. Bearing testament to this, representatives from the South African Private Practitioners Forum,  the Radiological Society of SA, Mediclinic, Discovery Health, Altron and Momentum Health will share their insights on how HIE will be used in their organisations. In addition, representatives from the Western Cape Department of Health will talk to the public-private collaboration with CareConnect.  

CareConnect has adopted a set of international standards (FHIR and HL7) to transfer and share data between various healthcare systems regardless of how it is stored in those systems.  These standards underpin interoperability because all participants are ‘speaking the same language’.  An interoperable health system will be critical in achieving Universal Health Coverage (UHC) which will require the ability for patients to move seamlessly between the public and private health sectors, facilities, clinicians or other service providers, depending on the expertise and care they require. To this end, there is engagement with the National Department of Health, who were represented at the event.

Dr Rolan Christian, CEO of CareConnect HIE

Central to the CareConnect HIE is a Unified Care Record (UCR), an electronic medical record that holds a patient’s entire medical journey. This constantly updated and ever-evolving record gives clinicians on-demand access to consolidated patient data, promoting swift, well-informed treatment decisions when and where they are needed.

Privacy and security of data is critical to the success of HIE. The CareConnect HIE conforms to both local and international data privacy regulations to ensure that sensitive health information remains protected at all times and will only be accessible to healthcare providers when medically necessary and only with the patient’s consent. User-based access permissions are automatically regulated by the HIE, further safeguard­ing sensitive patient information.

Sharing health data saves lives. The more data the industry shares, the more value and benefit to the patient that will be extracted from the HIE.

Dr Rolan Christian, CEO of CareConnect HIE

CareConnect’s innovative new use cases, ranging from tracking acute and chronic patient conditions, listing allergies and adverse reactions, to standardising doctor clinical (discharge) summaries, were demonstrated at the event. These features will enable better coordination of care, minimise medical errors and pave the way to a more cohesive health system. 

HIE in various forms has become common across many health systems in the world and has become a priority on many a government health policy agenda as a solution to achieving greater cohesion within health systems  and as a mechanism to address cost and quality issues in health. Reflecting global best practices, the CareConnect HIE aligns with the world’s most mature HIEs and breathes life into the National Department of Health’s National Health Digital Strategy for South Africa.  This important document outlines the country’s goals towards the development of electronic health records and building interoperability and linkages between existing patient-based information systems.

A strict code of ethics relating the use of information is governed by an internationally recognised and best practice multi-party trust agreement, called DURSA. The DURSA provides a framework that deals with sharing of data among HIE participants and defines the permitted purpose for which the data can only be used.

Dr Rolan Christian, CEO of CareConnect HIE shared: “Sharing health data saves lives. The more data the industry shares, the more value and benefit to the patient that will be extracted from the HIE. We envision that CareConnect HIE will become a ‘utility’ for the entire health sector – to enable improved quality of care, better health outcomes and a more responsive health system.”

The event today boasted a stellar lineup of speakers. Notably, Dr Stavros Nicolaou from B4SA and Aspen Pharmacare and Dominick Bizzarro, offering international perspectives from MVP Health Care, joined other industry luminaries. Their combined insights painted a promising future for healthcare – one that’s harmonised, transparent, and unequivocally cantered on the patient.

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World’s Top Heart Specialists to Train Locals this October

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South African non-profit company, the SA Heart Association’s renowned annual congress will be taking place this year at the Sandton Convention Centre in Johannesburg from 27 – 29 October and will feature unique, hands-on training sessions by some of the world’s leading cardiologists.

The congress, a key event on this year’s health calendar and eponymously dubbed the ‘Cardiac Collaboration’, will boast joint symposia in highly specialised fields such as cardiac anaesthesiology, endocrinology, critical and emergency care, sports medicine, and radiology, to name a few. The aim is to develop future collaboration with other academic societies and create a footprint for cardiologists to work in tandem with them and other special interest groups.

Speaking ahead of the annual congress, unlike any of the 22 preceding events, Cardiologist, Congress Convenor and Wits University lecturer, Dr Farouk Mamdoo, says several internationally renowned cardiologists and opinion leaders, local and global, will hold ‘Training Villages’ offering valuable, hands-on training to delegates. These will be held at times separate to the overarching congress presentations and spread across the three congress days, allowing delegates the chance to interact with international masters, some of whom will be using state-of-the art devices and equipment in these personalised training sessions.

The congress has sparked global interest and attendance is considered essential among cardiologists and related disciplines wanting to update their knowledge and take advantage of the unique collaborative gathering that will have far reaching future clinical and research implications.

The organizers have also taken the stellar expert input one step further. The trend-setting cardiologists will conduct roadshows at major hospitals around the country, both before and after the congress, giving local colleagues an unprecedented opportunity to work on patients with them, whether it be through consultations or surgical procedures. The roadshows will also provide continuity for delegates who attend the Training Villages at the Sandton congress.

Says Mamdoo: “Normally special devices, simulators and equipment are statically displayed on exhibition stands in the conference hall. However, at this year’s congress, delegates will be able to see them being used in real time – some of which this country hasn’t even seen before.”

Mamdoo says additional pre-congress workshops will consist of didactic and practical lectures about hands-on procedures, with ‘tips, tricks and advice,’ and case studies presented. Echocardiography, electrophysiology, paediatric cardiology, and cardiology for non-cardiologists will be among the fields embraced.

“The Training Villages will each have their own agenda with specific key learning topics and a timetable. Delegates can access these via the conference program on our website – and find out where the experts will be during the roadshow,” says Mamdoo.

Some of the top global names in cardiology, many of them local, that will be attending, presenting, and leading workshops at the congress, include: Professor Mark Petri,Cardiologist at the Institute of Cardiovascular and Medical Sciences at the University of Glasgow; Professor Javed Butler, Patrick H. Lehan Chair in Cardiovascular Research and Chairman of the Department of Medicine at the University of Mississippi; Professor Renato Lopes, Department of Medicine within the Division of Cardiology at Duke University Medical Centre, North Carolina; Dr Seth Worley, Electrophysiology and Interventional Implants, Medstar Heart Vascular Institute in Washinton DC; Dr George McDaniel,Paediatric and Adult Congenital Electrophysiologist, UVA Children’s, Virginia; and Professor Jeroen Bax, Leiden University, Netherlands; Non-invasive imaging.

Among the most cutting-edge developments to be presented will be breakthroughs in heart failure therapy, new ways of treating complex coronary disease plus advances in the latest techniques, technology, and diagnostic tools – and the evidence to support their use.

Local experts presenting at the congress – many of whom are globally recognized – include: Professor Karen Sliwa, clinician-scientist and Director of the Hatter Institute for Cardiovascular Research in Africa at the University of Cape Town (Managing cardio vascular risk factors during pregnancy); Dr Brian Allwood, Consultant Pulmonologist at Stellenbosch University and Tygerberg Hospital, where he has been responsible for expanding the pulmonary hypertension service and starting the first dedicated post-tuberculosis clinic in the country (Idiopathic pulmonary hypertension); Mpiko Ntsekhe, Cardiology Head of Department at Groote Schuur Hospital (HIV and cardiovascular disease – an update); and Fathima Paruk, Academic and Clinical Head of the Department of Critical Care at the University of Pretoria and Steve Biko Academic Hospital (Navigating social media as a clinician). Case-based plenaries will be a feature of the conference while cardiac Fellows will present their work in separate sessions with prestigious awards for the best abstract and oral presentations, plus a Henley Business School award sponsored by medical scheme, Discovery Health.

Cardiologists from the public sector, particularly registrars, are likely to find the conference particularly rewarding as few will have had the opportunity to work with much of the newer equipment that will be present – or interact with globally recognized expert’s face to face.

Says Mamdoo: “We look forward to hosting this exciting, world-class event with a jam-packed agenda and interacting with each other, celebrating our achievements and collaborating in an inclusive and diverse space with welcome encouragement from our learned peers – and fresh talent from across our beautiful country.”

To view the full congress agenda, access further information and book your place, visit: www.saheartcongress.org