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World Health Organization Consultation for People Living with Diabetes

World Health Organization Consultation for People Living with Diabetes

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Back in October 2, 2020, I participated in an interactive civil society dialogue hosted by NCD Child with WHO Director-General Dr. Tedros Adhanom Ghebreyesus. It was then that I first heard about the hope of a “Global Diabetes Compact” from Dr. Bente Mikelson, Director, Non-Communicable Diseases at the World Health Organization (WHO). Her vision was to identify meaningful solutions and support Governments to implement cost-effective interventions to combat the growing diabetes epidemic.

I am a firm believer in the fact that living with diabetes gives each one of us a unique perspective, a sense of resilience, and the art of insightful decision-making. Still, we have all seen that people with diabetes have been hit hard since the COVID pandemic, with our resilience challenged. Many have been unable to access insulin or faced disrupted medical services, and so many of us have been forced to stay at home to curtail the virus. Locked in! That’s how we feel sometimes living with diabetes when we are struggling to pass through the uncertainties of the daily ups and downs.

For me personally, it took way too long to finally accept my diagnosis of living with type 1 diabetes. The stigma of being a woman with a chronic disease, and the feeling of “not good enough” was strong. When I came to terms with it and decided diabetes was not something to be ashamed of, I started to share stories and advocate through global organizations and patient-led initiatives. I decided to not just “fit in the normal” but to change how we look at diabetes altogether and fight for our right to health.

On March 9th, 10th and 11th, myself and many T1International advocates – as well as other advocates all over the world – joined the World Health Organization’s first ever Consultation for People Living with Diabetes. It was an opportunity to hear from people impacted by diabetes from all around the globe and to share with the WHO how we want to see the Global Diabetes Compact take shape. Being a part of this event helped me on my journey, and I’m sure many others felt the same. These three days made us all feel less locked in.

I presented a keynote speech voicing my journey of living with diabetes and sat through each day inspired and moved by every voice that echoed in the virtual room. I am not surprised how much energy this movement of people with diabetes has. There is so much to learn from one another as we work towards building resilient health systems. So, we must collaborate to find the best solutions. As many of the voices in the room agreed, we need to go beyond storytelling to win hearts and great minds. We must cut through the noise to ensure a life of dignity and respect for every person living with diabetes.

Some thoughts and ideas that were shared over the three days include:

  1. Adding value and emphasis to lived experiences: finding clear ways to measure inclusion of people living with diabetes in the decision-making process
  2. Working towards including more, less often heard voices and making consultations and events more accessible to people from all walks of life
  3. Putting more funding towards diabetes issues, including support with complications, developing new treatments, altering clinical care, and preventing diabetes
  4. Improving affordability and access to insulin and essential diabetes supplies through transparency and lower costs to patients
  5. Creating a momentum around thriving with diabetes through mental health support, education, combatting stigma and community intervention

The Global Diabetes Compact (GDC) and the Consultation for People Living with Diabetes, gives me hope that there has been a step towards what we as advocates have long been fighting for. We have asked to have our voices truly included and to be treated like experts when it comes to solving global diabetes problems. We hope this is the start of real action and outcomes. Like Dr. Bente shared, it is time to co-create with WHO and move forward by holding their efforts accountable.

Note: You can see slides from the presentations at the Consultation event here.

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