In society, due to the lack of awareness and advocacy to highlight inspirational examples, diabetes is viewed as a deadly condition.
In health care systems, diabetes treatment is not patient-centered.
In public policy, diabetes is largely missing, except for the provision of free insulin to type 1 diabetes (which may often be irregular or incomplete) and subsidized consultation in public hospitals. The issues such as long waiting queues, low HCP-Patient ratio, lack of proper HCP training, high rate of complications, lack of patient empowerment, financial burden of blood glucose monitoring, screening, awareness, etc. are ignored in public policies.
This ignored set of issues is at times the very reason for stress, depression, lack of adherence to therapy, poor management and financial burden on both the person with diabetes as well as public health care.
Though effective planning and development require due time and discussions with all stakeholders, developing countries are surrounded by so many critical issues that stakeholder involvement is the very thing they put behind their backs. Even established diabetes organizations do not consider these factors an important part of their work.
Consider an example – high rate of diabetes complications due to poor management is a huge burden. Frequent blood sugar monitoring can lead to reduced rates of diabetes complications. However, since monitoring is expensive, neither the government, nor people, spend money on it. With the critical situation of diabetes complications later, the burden only increases in terms of finances and reduced quality of life.
To revert these challenges, diabetes advocacy is the need of the day. A number of young diabetes advocates, trained by international organizations, have taken up grassroots level projects to raise their voice and implement model solutions that can be adopted for long term effective change.
However, where to find funding for supporting such initiatives? Funding is already low for critical issues, like access to basic health care. Advocacy may be seen as an unnecessary cost, and at times even as a political threat! It certainly does not attract charity money!To attract money and attention, you need to highlight issues that are life-threatening in the short-term, and that does not sound politically threatening.
In this discussion, members are asked:
Is the young age and lack of experience, academic and professional honors an impediment in getting advocates recognized and heard in your country?
Is your government supportive of stakeholder involvement?
Does the media support the spreading of young diabetes advocates' voices?
Do the established diabetes organizations in your country recognize advocacy by people with diabetes as an important and necessary part of their work? Do they have specialized advocacy efforts? Are diabetes advocates regularly trained?
Does your country have advocacy start-ups established by people with diabetes? Do the bigger organizations support them? How do they acquire the funding?
Information about the discussion leader
Sana Ajmal was diagnosed with type 1 diabetes on her 15th birthday. Originally from Islamabad, Pakistan, she has a PhD in Computer Engineering and an academic career at the National University of Sciences and Technology in Pakistan. She is passionate about diabetes advocacy and has in-depth knowledge about diabetes-related stigma affecting the lives of young women, especially in developing countries. She joined the IDF's Young Leaders in Diabetes Programme in 2011, serving as the Vice President and the President-Elect and also acts as a diabetes educator and e-health researcher and has. Since 2014, Sana is the funder and executive director of Meethi Zindagi, a Pakistani non-profit organization working to provide social support to people living with diabetes, to promote awareness, education and to facilitate the psycho-social needs of the diabetes community.
This is the sixth in a series of discussions introducing some of the programme sessions that will be featured at the IDF Congress 2019 in Busan, Korea, 2-6 December 2019.