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The COVID-19 pandemic has changed virtually everything about the way the world runs, including type 1 diabetes advocacy. Historically, people with type 1 diabetes have had their voices heard through in-person, grassroots advocacy: awareness campaigns to break stigmas associated with the disease; rallies and organized events to engage the public, and, at times, testifying in statehouses on bills and legislation to promote better public policies for people living with type 1 diabetes.
COVID-19 Has Changed the Advocacy Landscape
Unfortunately, COVID-19 has changed much of that, especially for those who have compromised immune systems or are at higher risk for the coronavirus. All around the country, people are social distancing and staying closer to home as we await a viable vaccine. None of the preventive measures necessary to combat COVID-19 comport well with grassroots advocacy or community organizing.
State legislatures across the US are unsure what their legislative sessions will look like for 2021, and many public gatherings and conferences have gone virtual for the foreseeable future. Advocating for policy changes at the state level will become harder than ever due to budget deficits from the costs of the COVID-19 response. It all seems pretty…bleak. So, how can people with type 1 diabetes make their voices heard amidst a global pandemic with no end in sight?
People with Diabetes Can Still Have Their Voices Heard
While joining throngs of strangers in a crowded capitol building may not be on the agenda for any type 1 diabetes advocate in 2021, there are still ways to share your voice and move the needle forward on advancements, research, and even public policy and health insurance.
The T1D Exchange Registry, is an online research study that can empower individuals living with type 1 diabetes, amplifying their collective voice. The goal of this registry is to improve the lives of people living with type 1 diabetes by gathering real-world data that can be used in evidence-based medicine and research.
To participate in the Registry, individuals are asked to fill out a 29 question survey online. Once complete, it allows you to join the thousands of people affected by type 1 diabetes who are contributing their voices and experiences of living with this disease to a growing body of research that will help accelerate advancements in our care.
How Your Voice Contributes to Change
With the information collected from the Registry, the type 1 diabetes community at large has the power to help educate and influence policy makers, legislators and insurance companies to improve care for people living with type 1 diabetes. Furthermore, data gathered from the Registry can help researchers to advance treatments and technology for type 1 diabetes.
Getting Involved in Research is Easy
By participating in the T1D Exchange Registry, individuals can contribute to research that could bring new treatments and advancements one step closer to reaching people with type 1 diabetes. Especially during COVID-19, it’s important that people with type 1 diabetes stay safe while still having their voices heard on important matters such as coverage for care, access to treatments, and policies that positively or negatively are affecting their lives. Every individual voice adds to this chorus of shared experiences, enriches the body of data for all and contributes to something that can help not only you, but many other people in the future as well.
Both children and adults living in the United States with type 1 diabetes eligible to participate in the Registry. T1D Exchange is committed to keeping all health information private and secure. Participants in the Registry can withdraw at any time, and it costs nothing to participate. You can learn more about this by visiting t1dregistry.org!
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