Diabetes Alliance represented at International Diabetes Congress 

The International Diabetes Federation (IDF) Congress is a unique forum for knowledge exchange, bringing together a global network of health professionals, advocates and people living with diabetes.

Diabetes Alliance presenting at IDF Congress 2022

This year, the South African Diabetes Alliance submitted an abstract which was not only selected for e-poster display but also for an e-poster discussion live in Lisbon on Tuesday 6th December. 

The abstract and poster are titled South Africa’s Diabetes Charter: a voice for South Africans living with diabetes, and discussed the South African Diabetes Charter, which was created for the 2021 Diabetes Summit.

In November 2021, South Africans living and working with diabetes came together to develop SA’s first Diabetes Charter: a framework for setting adequate standards of healthcare in diabetes.

Collaborative experience

The Diabetes Alliance called upon volunteers to discuss the diabetes response and identify challenges. These included:

  • South Africans with diabetes
  • Academics
  • Healthcare providers (endocrinologists, diabetes educators, podiatrists, dieticians, and ophthalmologists) and 
  • Other stakeholders 

The volunteers were organized in five workstreams, each focusing on a specific theme aligned to the WHO Global Diabetes Compact:

  1. Awareness and Prevention
  2. Education
  3. Management and Access to Care
  4. Surveillance
  5. Research and Innovation

Lessons learnt from IDF Congress

The IDF Congress had a strong South African representation, and a number of fascinating subject streams, including Clinical, Therapeutic and Technology Research, Diabetes in Women, Basic and Translational Science, Diabetes Complications and Comorbidities, Epidemiology and Public Health, Health Services and Policy, Education and Integrated Care and – unique to IDF – Living with Diabetes. 

There were many lessons to be learnt – from other countries like Kenya and Pakistan who are working towards setting up diabetes registries and make data available from essentially paper-based systems to scientists reporting on mental health and diabetes (a pertinent topic for South Africans with diabetes) and the ticking time bomb that is gestational diabetes, which increases the risk of developing Type 2 diabetes in the offspring by a staggering 8 times. 

Advocacy around the world

There were also many lessons to be learnt from the many diabetes advocates and those working in diabetes who converged in Lisbon from all over the world. These included discussions on topics like the hidden impacts of diabetes beyond the cost of insulin; understanding the diabetes experience through the lens of culture; creating inclusive, safe spaces for the diabetes community; and health system responses to innovation and technologies. Crucially for South Africans, there was also advice about how to use the IDF Atlas for advocacy with policy makers, and patient participation in policy and systems.

Women’s issues featured strongly – not only gestational diabetes and the lack of follow-through with women who have presented with gestational diabetes and are at double the risk of developing Type 2 diabetes, but also specifically women’s issues that impact diabetes self-care, and the extra burden they often carry in the home. 

Health literacy and behaviour change

While many of the speakers spoke through the lens of developed countries, there was also information on health literacy in countries with many different languages, behaviour modifications for the lifestyle aspects of living with diabetes, and the importance of reducing diabetes stigma across the board – as well as practical ideas for how to do that. Peer support was mentioned again and again as an effective way to make living with diabetes more manageable.

As well as the many scientific and lived experience sessions, the IDF Congress offered the opportunity for South African delegates to connect with international colleagues, make new connections, and forge stronger bonds for South Africans with diabetes, across the world. It was an inspiring end to 2022, and filled the Diabetes Alliance team with ideas for 2023!

Some of the South African delegation (L to R): Dr. Patrick Ngassa Piotie, Liana Grobbelaar, Kirsten De Klerk, Bridget McNulty, Cathy Haldane, Thapi Semenya, Prof. Paul Rheeder.

Find out more about the Diabetes Alliance at www.diabetesalliance.org.za or contact info@diabetesalliance.org.za 

October 2022 update

Our fourth and final Diabetes Board meeting of the year was held in October 2022:

The agenda of the meeting was as follows:

  1. DA invitation to present at the IDF: Dr Patrick Ngassa Piotie
  2. Members can share their events and campaigns for upcoming diabetes month
  3. Type 1 diabetes research: Dr Patrick Ngassa Piotie
  4. Support IDF call to action to policymakers: Dr Patrick Ngassa Piotie

Here is a recording of the meeting:

August update

Our 3rd Diabetes Alliance meeting for the year was held in August 2022.

The agenda of the meeting was as follows:

  1. Partnership with the NCD Alliance: Dr Patrick Ngassa Piotie
  2. Investment case update: Bridget McNulty
  3. Diabetes advocacy Marathon: Kirsten de Klerk
  4. World Diabetes Day education focus: Dr Patrick Ngassa Piotie
  5. Feedback from the DA Task Team on Diabetes Surveillance: Dr Patrick Ngassa Piotie
  6. Adding a government advisor board member: Bridget McNulty

Here is a recording of the meeting:

May 2022 update

Our second Diabetes Alliance meeting for the year was held in May 2022.

The agenda of the meeting was as follows:

  1. Diabetes Alliance communication and engagement strategy with NDOH: Dr Patrick Ngassa Piotie
  2. Surveillance meetings update: Dr Patrick Ngassa Piotie
  3. Investment case discussion: Bridget McNulty
  4. SA Diabetes Advocacy introduction: Kirsten de Klerk
  5. Diabetes Alliance Chapters: Dr Patrick Ngassa Piotie

Here is the recording of the meeting:

A recent WHO update on diabetes surveillance

Dr Bente Mikkelsen, the WHO Director of Noncommunicable Diseases (NCDs), was recently interviewed in EURACTIV discussing diabetes data. The full interview is here.

Her approach confirms the decision taken by the Diabetes Alliance to have Diabetes Surveillance as the theme for 2022.

What about registries for diabetes? This is being discussed a lot and countries seem to have a different take on this. 

Data is important and we need data to take action. What we are looking at, in general, is facility-based data and data included in the health information system. At the moment, we have very scattered data.

I think we will, in the coming years, discuss this more intensively as we develop tools for collecting facility-based data for all diseases, but also linked to the global diabetes targets that we have suggested for the WHO member states to discuss this year.

So what should a diabetes register look like?

This is something we need to come back to. The format should accommodate various settings. And I look forward to having this discussion with our Global Technical Advisory Group on diabetes that will give advice to WHO.

But I would like to say that without data, it’s very difficult to build accountability and also to help ensure that diabetes is diagnosed, treated and controlled.

Our vision is to reduce the risk of diabetes, and also to ensure that all people who are diagnosed with diabetes have access to equitable, comprehensive, affordable and quality management. And to reach this target, we need to measure, we cannot only guess.

February 2022 update

Our first Diabetes Alliance meeting for the year was used to decide how to best bring the Diabetes Charter to life in 2022.

The agenda of the meeting was as follows:

  1. Welcome from new chairperson: Dr Patrick Ngassa Piotie
  2. Theme for the year from the Diabetes Charter: Diabetes surveillance: Dr Patrick Ngassa Piotie
  3. Membership for the year 2022: Bridget McNulty

The audio recording of this meeting can be found at this link.

Inaugural Diabetes Summit

Inaugural Diabetes Summit co-ordinated by the University of Pretoria and the Diabetes Alliance highlights the need for a COVID-19 type response to stem the rising tide of the diabetes pandemic in South Africa.

  • Diabetes is the leading killer of women in South Africa
  • Half of the 4.6 million people living with diabetes in South Africa are undiagnosed, little changed in the last 25 years
  • 68% of people diagnosed with diabetes carry at least one of the common complications
  • The costs of inaction far outweigh the costs of action
  • Diabetes Charter unveiled focussing on the challenges and proposed solutions to diabetes in South Africa

On the 100th anniversary of the discovery of insulin by Frederick Banting and Charles Best, academics, doctors, educators, psychologists and people living with diabetes joined hands in a virtual presentation and panel discussion to commemorate South Africa’s first Diabetes Summit as an initiative of the Diabetes Alliance and the University of Pretoria.

Prof Tawane Kupe, University of Pretoria

Prof Tawane Kupe, Vice Chancellor of the University of Pretoria set the scene for the discussions contextualising diabetes in a South African scenario. Most profound was the fact that diabetes is the number one cause of death in women in the country and number two among men. 

“South Africa also faces an extremely high obesity rate with 68% of women and 31% of men overweight or obese.”  

Prof Tawane Kupe

He said the direct medical costs associated with Type 2 diabetes, which accounts for 90% of diabetes cases, is significant with a 2018 public sector figure for those diagnosed with Type 2 at R2.7 billion. The projected costs for 2030 for all treatment of Type 2 diabetes is estimated at R35.1 billion, 51% attributable to the treatment of the disease and 41% to complications.

Dr Kibachio Mwangi, WHO

Dr Kibachio Mwangi of the World Health Organisation (WHO) told participants that 420 million people live with diabetes worldwide and 4.6 million in South Africa, half of whom are undiagnosed. “The cost of inaction far outweighs the cost of action,” he said. Dr Mwangi  emphasised that the WHO looks at diabetes as a barometer of national governments’ responses to other non-communicable diseases (NCDs). The WHO has set a target of 80% of those living with diabetes worldwide to be diagnosed and under treatment and, as part of the centenary of the discovery of insulin, has launched the Diabetes Compact – a five tiered approach to diabetes prevention and management at a primary health care level.

Dr Yogan Pillay, Clinton Health Access Initiative

Dr Yogan Pillay of the Clinton Health Access Initiative and former Deputy Director General within the Department of Health equated the response needed for diabetes in South Africa to that of COVID-19 and climate change and said it could only be achieved through a multi-sectoral and interdisciplinary approach. 

“What’s needed is a life-course, whole-of-society and inter-generational approach that tackles the multiple drivers of diabetes at the same time.”

Dr Yogan Pillay

This kind of approach was initiated in Singapore in 2016 in its “War on Diabetes” aimed at reducing the prevalence of modifiable diabetes risks – overweight, obesity, physical inactivity and unhealthy diet in the general population. It also meant addressing the commercial impacts on health through harmful products and the marketing of those products. Dr Pillay said there’s so much more that needs to be done at an individual level, at the health sector level and at a societal level and hoped that the Summit kicks off a national campaign against diabetes with a great sense of urgency.

Prof Naomi Levitt, Chronic Disease Initiative for Africa (CDIA)

Modifiable diabetes risks were identified in the early 90s in a survey done within the Western Cape urban communities, where obesity and lifestyle alterations through urbanisation saw 6% of the surveyed population having diabetes, half of whom were undiagnosed and only 65% of those diagnosed were receiving treatment.

Prof Naomi Levitt, Director of the Chronic Disease Initiative for Africa (CDIA), who conducted the research, said an audit of health care services revealed alarming statistics in diabetes control. The mean HbA1c, was 10.5%, only a third of patients had controlled blood pressure and three quarters of examined patients attending health care services had at least one complication, of which eye complications were prevalent in 60%, and foot and renal complications in 30%. And very little has changed with Prof Levitt saying that the prevalence of diabetes has increased to 15% of urban populations, that there’s continued suboptimal control and monitoring, and poor diagnosis of complications within the primary health care sector. As an example, there is not one podiatrist represented in the public sector health care system in certain provinces.

Panel discussion: diabetes in South Africa

During the panel discussion that followed the formal presentations, Dr Joel Dave, Head of Endocrinology at UCT and Groote Schuur Hospital told attendees that we had a collision of pandemics between COVID-19 and diabetes and that people living with diabetes were not at greater risk of infection, but were at greater risk of developing more sever disease – at least 45% needing admission, of which 50% succumbed to the virus.

In response to the facts presented by panellists, the Diabetes Charter, prepared by the Diabetes Alliance was unveiled as an initiative to unite the disparate voices working with diabetes in South Africa and aligned with the WHO Diabetes Compact and the South African National Department of Health, National Strategic Plan for Non-Communicable Diseases, briefly touched upon in a presentation to the Summit by Deputy Minister of Health Dr Sibongiseni Dhlomo. 

The Diabetes Charter

Chairperson of the Diabetes Alliance, Bridget McNulty, introduced the Charter as a “menu” presenting comprehensive analysis of the various challenges we are facing with diabetes across the five themes with proposed evidence based solutions to the challenges. 

 The work streams mirror those of the WHO Diabetes Compact:

  • Awareness and Prevention
  • Education
  • Management and Access to Care
  • Surveillance
  • Research and Innovation

McNulty said the Diabetes Summit would be held every two years and the Charter would be revised over the same period. “We want it to be an alive, working document. We have included contact details in the Charter if anyone has suggestions. This is something that’s collaborative and co-created and we want it to be a living document”, she told the over 200 attendees. She said all the words being used around diabetes are of a car crash mentality and that we can change that and alter the trajectory of diabetes in South Africa through participation in the ideals of the Charter.

Article by Chris Buchanan.

October 2021 update

Our final Diabetes Alliance meeting for the year was used as a testing ground for the five workstream presentations for the Inaugural South African Diabetes Summit, to be held in November 2021. We also discussed the Diabetes Charter at length, and made changes to the document as per our discussion.

Here is the recording of the meeting:

August 2021 update

Our third Diabetes Alliance meeting for the year was an exciting one. We discussed the Diabetes Alliance Vision, Mission and Values (document below) and the Inaugural South African Diabetes Summit, to be held in November 2021.

There was robust discussion around the goals and purpose of the Summit, and we look forward to volunteers for each of the 5 workstreams mentioned:

  1. Awareness and prevention
  2. Education
  3. Management and access to care
  4. Surveillance (data)
  5. Innovation and research

As well as volunteers for the Summit Planning Committee. Here is the form to fill out if you would like to be involved.

Here is the recording of the meeting:

The WHO Diabetes Targets mentioned can be found here.

Diabetes Alliance Vision, Mission and Values

May 2021 update

We had our second quarterly Diabetes Alliance meeting in May 2021. This was the second full meeting of the Diabetes Alliance, including the National Department of Health representative, Itumeleng Setlhare, and WHO representative, Joseph Mwangi.

The agenda was as follows:

  • Update on the Diabetes Registry progress by Patrick Ngassa Piotie
  • The GREAT for Diabetes initiative by Prof Bob Mash from the University of Stellenbosch
  • The Diabetes 8 Self-care Learning Concept by Mmusoothata Mokgalagadi

Here is the recording of the meeting:

We have space for one more board member from November 2021 to November 2022, please let me know if you would like to volunteer. The time commitment is minimal: 4 board meetings a year, one week before the Alliance meetings.

The publication Patrick mentioned in relation to the Diabetes Register is on the Diabetes Alliance website here: Data Centre Profile: The Provincial Health Data Centre of the Western Cape Province, South Africa.