Long-term Access for People with Type 1 Diabetes
People in the USA, and throughout the rest of the world, are increasingly unable to afford the astronomical costs associated with their Type 1 diabetes. Our charity, T1International, did a survey in 2016 which showed that people in the USA are paying, on average, $571.69 per month on diabetes costs. It also showed that someone in Brazil or India might have to spend as much as 80% of their income each month to afford the costs of their diabetes.
The reasons behind this unaffordability are complex, and solutions can feel overwhelming. Not to mention, there are things that might look like solutions on the surface, which can sometimes actually be more detrimental.
Holding Patients Hostage
For example, some of the big and powerful insulin manufacturers are “supporting” people with Type 1 diabetes around the globe by providing donations of insulin to communities in need. While these donations can save lives, they can also hold clinics and patients hostage. The beneficiaries of these donated essentials become completely reliant on the insulin companies to continue their generosity.
T1International has worked with several groups who explained that patients found themselves in intensely dangerous situations because a company decided that they could no longer “afford” to support the communities they had been helping. On other occasions, the quantity of vials of insulin donated or test strips provided was significantly reduced, even though more people were being diagnosed with Type 1 diabetes in the area. Essentially, the insulin producer pulled the lifeline away from people in desperate need.
When insulin producers are making billions of dollars in profits, how can they justify reducing or removing their support in parts of the rest of the world? How can they justify such high prices in America?
A Better Way
At T1International, we are working towards a solution that means more people have long-term, unrestricted access to their essential insulin and supplies, as well as other aspects of diabetes care. The solution we envision is one where a greater number of people benefit in a sustainable way.
This means that, in addition to a unified diabetes community calling for change, the people most affected by the issues in their country or their town will need to lead discussions and plans for a solution. The solution is likely to include elements of diabetes advocacy.
Beyond Type 1 and T1International regularly highlight and share stories from people around the world, many of whom face a struggle related to access daily. Awareness is only the first step. To help turn the awareness into advocacy action, T1International – thanks to funds from Beyond Type 1 – created a resource for people around the world who want to advocate for better access to insulin, diabetes supplies, care or education.
The Access Toolkit
The Diabetes Access Advocacy Toolkit is the start of our vision for a better future. This resource is the first of its kind for the diabetes community related to the issue of access to medicine and care. We spent months putting this resource together and consulted the communities we work with to ensure that it will be practical and useful for many types of people in various parts of the world.
The toolkit includes real-life advocacy case studies and is made up of five sections to guide the reader through various stages of the process, including:
- Defining advocacy
- Goal setting
- Planning your action
- Ways to take action and put pressure on your target
- Evaluating your efforts
Although each person’s local issues are specific and challenging in their own ways, there is still a lot we can learn from and share with each other. Our Access Advocacy Facebook group allows for this sharing and collaboration to take place. The group is open to anyone interested in advocacy related to access so that people can ask questions, share successes and discuss challenges.
The toolkit is free to download online, but we have also printed 500 hard copies to share with our partners and advocates around the world. So far, we have sent the booklets to 18 countries throughout North America, South America, Europe, Asia, and Africa.
We will work closely with our Global Advocates around the world to ensure they can make the most of the toolkit. They will form working groups and train others in their local area to use the toolkit and to carry out an advocacy plan. The impact that one trained advocate has will be amplified repeatedly as they share their skills with others.
With our support, and support from each other, advocates around the world can achieve their specific advocacy plans. One step at a time, we will see access improve for everyone worldwide.
While advocates around the globe are changing things on a grassroots level, T1International is also committed to bringing diabetes organisation together so that we can collectively support each other’s efforts and find the best ways to work together.
The Access Alliance was formed in 2013 and now has six members. The organizations in the network come together regularly to discuss priorities and plans for improving access for people with diabetes. If you know an organization that might be interested in joining The Alliance, they can visit the website to learn more.
We believe that collaboration is important and that we are always stronger if we share openly and work together.
Learn more about Access issues and how you can help.