‘I Don’t Wish I Had AIDS’: If only diabetics worldwide could feel the same way
More than 371 million people in the world have diabetes. The number continues to grow, especially in countries like India and China, which make up more than half of all cases. Nov. 14, World Diabetes Day, is a reminder to the diabetic community of what we continue to work for: Diabetes has become a human rights issue.
Despite the numbers, non-communicable diseases like diabetes are not a global priority. Half of all cases are never diagnosed, and many patients who are diagnosed are left in a cycle of denial and acceptance that is difficult to break.
In one qualitative study in Cambodia in 2012, diabetic patients were consistently heard “wishing they had AIDS.”
Unfortunately, this is an issue that continues to resonate in my work in India with Sucre Blue. (Note: The author is the organizaiton’s founder and executive director.) Patients with diabetes need access to information and affordable care in order to maintain a quality of life.
Despite the fact diabetes is no longer a rich man’s disease, the poor are left to pay exorbitant costs without the tools necessary to facilitate improvements in diet and exercise, let alone access to affordable medicines and supplies. Type 1 diabetics are estimated to spend 25 percent of their income on health. So to be living on less than $2 a day, and a Type 1 diabetic, is virtually a death sentence.
Need for international patient advocacy
Bob Krause is the oldest surviving diabetic in the U.S., at over 90 years old. The oldest known diabetic in India is Usha Dhiman, who is 60. We need more diabetics to come together to discuss these disparities, and to address how important prevention and awareness about diabetes are within their communities.
Patients are the ones who ultimately have to deal with these issues, and should be the first to advocate to local and national governments in addressing these disparities. Sucre Blue, for instance, enlists diabetics as community health workers to screen, diagnose and provide affordable follow-up in rural, low-income areas of India. We have feedback loops set up for patients to interact with one another, and also with the local government leaders in each village.
Unfortunately, our patients aren’t active on social media and are unable to access a computer. But as technology continues to emerge, more and more online diabetes communities have noted a sharp increase in users from emerging economies. And campaigns like NCD Free and 100 Campaign bring a lot of awareness about the fact that many assumptions made about patients have been wrong.
Social enterprise – filling in the gaps
Until a solid framework for access and affordability in diabetes has been put into place, social enterprise represents a huge opportunity for entrepreneurs looking to make a difference. Bangalore-based Jnana Sanjeevini is India’s only sliding-scale diabetes clinic which understands that emotional support is what makes or breaks patient-doctor relations in diabetes treatment. And without an entire team – the family, patient, doctors, nurses, counselors and nutritionists – the patient will be unable to thrive.
Medicine can only take you so far. Le Nest in China, and Clinicas de Azucar in Mexico, have provided other comprehensive solutions to diabetes management, but there is lots left to be done. It’s organizations within the diabetes development space like Sante Diabete, which focuses on diabetes prevention in Africa, that need to be encouraged, fostered and given access to funding when little is available.
Increasing participation and incentives
We need diabetics who have access to speak up for those who don’t, explaining how it would impact their life. And why the private sector needs to support social business models, both for business and social good. We need amazing campaigns like Strip Safely to speak up about how fewer than 4 percent of diabetics in India test their blood sugar more than four times a day, when the average American tests seven times. We need to advocate because in a country like India, these products aren’t available outside of Tier 2 cities, in a country with an estimated 70 percent rural population.
We need to give national governments access to tangible data so they understand the incentives to their involvement – that paying out for CMS (Center for Medicare and Medicaid) reimbursement makes sense when it gives patients better results, improved compliance and a huge cost savings through preventing blindness and keeping a large number of diabetics from going on dialysis.
Data-focused organizations like Jana Care will lead the future of policy changes for diabetes in the developing world, by creating accurate Cost Per DALY (Disability-Adjusted Life-Year) metrics that don’t exist for diabetes in places like India. That’s something many international diabetes organizations continue to struggle with, when evaluating the impact of a disease that is very complicated due to its comorbities and its six different stages of progression.
As a Type 1 diabetic myself, I don’t wish I had AIDS. I do wish I had access and could afford to take care of myself. By bringing together the diabetes community and those working in it, one day no child will face the reality of diabetics around the world, wishing they had AIDS.
Until there’s hope, we will continue blaming governments. But the reality is it’s up to us to steer the course of the future of diabetes.
Erin Little, who was diagnosed with Type 1 diabetes at age 11, is founder and executive director of Sucre Blue.