Data Show Patients With T1D Frequently Need Emergency Care Before or Shortly After Diagnosis

In part 2 of an interview with Pharmacy Times, Kristian Hurley, senior vice president of Programs, Advocacy, and Health Equity at Beyond Type 1, discussed the importance of proactive screening for patients with signs of type 1 diabetes (T1D). Patients with T1D frequently require emergency care either shortly before or after their diagnosis, as they adjust to the extensive lifestyle requirements needed to manage the disease. Hurley also discussed new survey research from Beyond Type 1 and commissioned by Sanofi.

Q: What did the new research find with regard to emergency care among those with T1D? What does this suggest about the need for screening?

Kristian Hurley: Yeah, so as you know, Beyond Type 1 released a survey called “The Cost of Not Knowing” survey that was commissioned by Sanofi, and we talked to individuals living with T1D, as well as caregivers, and asked them about the social, emotional, financial burdens of getting diagnosed with T1D. And what we found is that nearly 9 in 10 patients with T1D, about 88%, required emergency care either before or during their diagnosis. And so, we kind of talked about this a little earlier, that's getting diagnosed in crisis. And what we found is that not only is it this traumatic situation of being diagnosed in crisis, but what we also saw was that about 50% of the individuals who got their diagnosis that way, who were having to engage with the emergency care system, spent at least $5,000 on that diagnosis and then on that emergency care. And then nearly 1 in 4, about 24% of individuals, spent at least $10,000. So, you know, that's significant for a family who is not expecting this, who has no awareness that this is even a possibility, to have a surprise, not only traumatic diagnosis within their family, but also the out-of-pocket cost of this emergency visit. And seeing that, on average, at least $5000 and seeing many people experiencing $10,000 in emergency care was quite a staggering statistic from our community, and one that, again, helps us to sort of demonstrate why it's so important for people to assess their risk early and go ahead and get screened so that we can avoid this, right? People don't have to get diagnosed in crisis. We can help people avoid that situation.

Q: How is management of T1D challenging for patients, and how does this affect their mental health and well-being?

Hurley: Yeah, well, if you’re diagnosed with T1D, you are insulin dependent. And so, this changes for most families pretty much everything. Beyond Type 1 is the largest group of individuals living with T1D and T2D, and so we hear a lot from our community members about how these diagnoses impact the general families. And what we found was that, you know, parents worry significantly over the affordability of the things that they need to be able to support their family member with T1D. People talk about it being sort of a constant math problem. You know, it's like you want to have a sandwich for lunch and all of a sudden it goes from just having that sandwich to being able to calculate the 15 different things in the sandwich and how that will affect your glucose levels, and how much insulin you need to be dispersing. And so, it's a constant struggle that individuals living with T1D, just every day all day have to be doing these sorts of calculations and making sure that they are providing themselves with what they need to be able to survive. And so that's a real struggle for our community members.

One of the things that we saw in the survey was that about 79% of individuals with T1D and about 83% of caregivers indicated that they had to have major life changes as a result of that T1D diagnosis, primarily because of feeling just very overwhelmed and underprepared for that diagnosis. We've also heard young community members talk about missing out on things, or having to change your life, things as big as thinking that you're going to go off to college in the fall and having to delay a year of college because now all of a sudden, your life has changed. And you’ve got to learn quite a bit about diabetes and T1D and how to manage it, and really being able to get that under control before you can go off to school. And so, it's a huge, life-changing impact on families. And so, again, when we think about this work, about raising awareness about T1D in general, getting people to think about screening, part of why we're doing that is because community members have shared that having had this knowledge earlier, having had the opportunity to assess their risk and maybe know that it's coming, would be a huge game changer, right? It would give people an opportunity to learn about T1D prior to that diagnosis, to learn about what that management situation is going to look like, to give you an opportunity to join a community and talk with other families and caregivers and community members who are dealing with this, right? And so that's just a really critical step. It's a very challenging thing with diagnosis socially, emotionally, financially, and it truly changes the individual and the family's lives, potentially for quite a long time until they get their hands wrapped around management.

Q: How can pharmacists help ease the transition when patients are first diagnosed with T1D?

Hurley: Yeah, well, you know, I'm not a clinician, but we often talk about our pharmacy partners as part of the care team. I think there's so many things that that pharmacists can do as advocates. I mean, that's from my point of view. At Beyond Type 1, we would love to see more pharmacists partner with us to become ambassadors. Much of this work has come out of our See the Signs campaign that we were doing around raising awareness of the signs of diabetes, which is a very critical component, right? What are the signs and making sure that people can identify them? And so, we started this movement of recruiting ambassadors, and we now have over 3000 ambassadors around the country who want to help us. They want to help raise awareness in their community, within their sphere of influence, and help community members to be prepared and have better outcomes.

And so now that we've expanded into screening, [we have] the same call to action, right? How can we get our pharmacy partners on board becoming ambassadors? How can we provide you all with resources so that you know how to respond to the community when they come in and ask about their risk? We have toolkits and 1-pagers and information that can be distributed and displayed right in the in the pharmacy setting so that people can have those resources accessible. And essentially, again, [we’re] thinking about pharmacists as part of the care team. You know, insulin is such a huge and critical component of management, particularly in early diagnosis, and we often see pharmacists as a part of that. When families are learning these situations, they can ask [the pharmacists] questions. And so being very knowledgeable, we encourage any of our pharmacy partners to check out our website—beyondtypeone.org—to learn any additional information that you need to know about resources, even access. If people are challenged with affordability for insulin, we have our getinsulin.org platform, which helps to direct individuals to patients programs that they might qualify for, and so forth. So, for pharmacists to be able to be aware of that and be able to share that information with the community would be amazing.

And then anything they can do to help to assess risk [is vital]. I know that very oftentimes pharmacists have clinical capabilities, right? People come in and they make appointments, they get assessed, they get tested. And so, for clinicians, for pharmacists to be a part of that and listening and hearing where there might be that potential for risk, making sure that they're leveraging our resources and helping people understand how they might go about screening, if that's not available through their pharmacist. But yeah, just empowering themselves, being part of the movement, getting the resources, becoming an ambassador, making sure that they are providing those resources back out to their community members to help individuals learn the signs and how they can get screened, and also just supporting families, particularly in that vulnerable newly diagnosed state and answering questions and helping them to navigate that new reality.

Q: Is there anything you’d like to add?

Hurley: So, we really encourage our pharmacy partners to visit us at beyondtypeone.org. Learn about becoming an ambassador for our See the Signs [campaign] and screening work. We have toolkits available that provide a guidebook for individuals as to how to have a conversation with their clinician about screening. We have cost information, because oftentimes people will ask what the cost is, and so we try to give people an idea of that. We have all the different options available to them to access screening and how that varies with their insurance. We've got 1-pagers, you've got information about what is T1D and what are the signs, or what is screening, or what is an autoantibody. And also [we have] information on if you get screened, then what? You know, when you get those results back, they will be looking at how many autoantibodies you have. And so, if you only have 0 to 1 autoantibodies, that's negative, but if you have 2 or more, then you really need to be speaking to your clinician and putting a plan together because you are at much greater risk for then developing T1D. And so, we have all of these resources in our toolkits and our materials. So, we welcome our pharmacy partners to reach out, become ambassadors, and engage in this work with us as partners.