Type 1 Diabetes: The High Price of Not Knowing

Screening for type 1 diabetes (T1D) may help reduce the risk of people getting seriously ill at the time of diagnosis – yet very few adults are aware screening even exists. In fact, just 14% of adults with T1D say they were screened with an autoantibody test prior to their diagnosis, according to “The Cost of Not Knowing” survey from Beyond Type 1 and commissioned by Sanofi.

Kristian Hurley
senior vice president of programs, advocacy, & health equity, Beyond Type 1

What’s more, among those who did not screen, or whose loved one did not screen, 72% of adults with T1D and 66% of caregivers to children under the age of 18 who live with T1D say they were unaware a T1D autoantibody test was available.

This awareness gap has caused many in the T1D community to find out about their condition in an emergency setting. Consider that up to 40% of cases of diabetic ketoacidosis – a complication of T1D that can be life-threatening – occur in people who are newly diagnosed. In an instant, lives are often turned upside down after being diagnosed with T1D, a chronic autoimmune condition with no known cure that requires 24/7 monitoring and management. With this in mind, it should come as no surprise that 92% of adults with T1D and 96% of caregivers recommend friends and family members get screened with an early autoantibody test for T1D in order to better understand their risk of developing the condition.

In reality, no one should have to experience the impacts of a sudden diagnosis. People often learn they have T1D only after symptoms are present, but early screening has the power to change that paradigm. It’s time we come together – as patient advocates, health care professionals, legislators, and more – to help build an infrastructure that promotes T1D screening at both a national and local level. We all have a role to play in bridging the gaps. Here’s how health care professionals can support this effort:

Spotting the risks

Because it occurs in stages, T1D is elusive and can often take months or even years for symptoms to present noticeably – and, by that time, someone is likely already in a late stage of the condition. Educating individuals of all ages about not only the symptoms but also the risk factors of T1D is critical, ensuring those at risk have the knowledge and tools as early as possible to take control of their health.

Accordingly, HCPs can help by proactively making information about T1D and related risk factors readily accessible during annual, routine appointments. As one notable example, T1D has long been referred to as “juvenile diabetes; however, considering more than half of people newly diagnosed with T1D are diagnosed as adults, it’s clear that screening information can (and should) be discussed with people of all ages. Additionally, while health care professionals should absolutely pay close attention to those with a family history of T1D – given their risk of developing the disease is up to 15x higher – it’s also important to consider that 90% of people with T1D have no family history at all. By widening the scope of T1D education, health care professionals can make sure as many people as possible are informed about T1D risk factors and help families feel empowered to get screened early.

Recognizing the value of knowing sooner

For many, a sudden diagnosis brings with it significant tangible burdens – like DKA – as well as intangible burdens. According to “The Cost of Not Knowing,” 64% of adults with T1D say their emotional health declined when they first received their diagnosis. Moreover, nearly 9 in 10 caregivers (87%) gave up some of their interests or future plans when they learned of their loved one's diagnosis, which is also true for 71% of adults with T1D when they learned of their own diagnosis.

Thankfully, knowing sooner can make a difference. A staggering 85% of adults with T1D say their life may have been different had they screened early for T1D and known sooner about their diagnosis, with more than 1 in 3 (34%) stating they may have felt more in control of their health, 28% sharing they may have had more time to prepare, and 20% noting they may have avoided the stress that comes with not knowing. For health care professionals, understanding the value of early detection and its ability to alleviate some of the emotional and social burdens, in addition to the physical tolls, that result from a sudden diagnosis is key to having meaningful discussions with adults and caregivers about why time to prepare for the future could be truly life changing.

Advocating for awareness and access

Despite the clear benefits of early detection, autoantibody screening for T1D is a largely uncommon practice – which in part can be traced to perceived barriers preventing access. For instance, among adults with T1D and caregivers who were aware of autoantibody tests prior to their diagnosis, 84% of adults with T1D and 78% of caregivers said that barriers prevented them from getting screened. These disparities highlight a clear disconnect between availability and interest that we must collectively address regarding T1D screening. Of course, no single entity can solve this problem alone. However, by working together with HCPs to improve awareness of and access to T1D screening, we can give more individuals valuable insights into their health.

Where to go from here

When it comes to T1D, early knowledge is power. Thankfully, as indicated in findings from “The Cost of Not Knowing” survey, knowing sooner has a clear impact – mitigating both the invisible and visible burdens brought on by a sudden T1D diagnosis. For too long, caring for T1D has been reactive. Changing the course of T1D care will require a collective effort to establish an infrastructure that supports proactive screening. Health care professionals are on the frontlines of this fight and are key to making this vision a reality.

Kristian Hurley is the senior vice president of programs, advocacy, and health equity at Beyond Type 1. For more information on “The Cost of Not Knowing” survey findings and methodology, click here.