Dr Frank Martin Emphasizes the Importance of T1D Education

Screening alone will not reduce the risk of diabetic ketoacidosis, said Frank Martin, PhD, director of research at JDRF.

Transcript:

Screening will detect individuals at risk of type 1 diabetes (T1D) and potentially allow for an opportunity to prevent diabetic ketoacidosis (DKA). Why is preventing DKA so important, particularly to payers?

Thanks for bringing that up. That allows me to clarify a specific point: screening alone will not reduce the risk of DKA. Screening, plus education and appropriate medical monitoring, that is what reduces the risk of DKA. That's been shown definitively by Anette Ziegler, MD, PhD, in Germany; by Marian Rewers, MD, PhD, here in Colorado.

We can screen people, but those people need to be taught about what the signs and symptoms are of forthcoming T1D onset—things like thirst, excessive urination. People in the T1D community know these, but people outside the T1D community don't know these.

But [those at risk] also have to be monitored by a doctor. The doctor needs to know "I have a patient with these sorts of auto antibodies, these sorts of T1D risk factors. What is the appropriate monitoring I can do in this patient that will reduce their risk of future DKA?" That looks like things like blood glucose monitoring, or maybe more bespoke in-clinic tests like oral glucose tolerance tests.

We and our colleagues at Helmsley Charitable Trust are starting to work with the experts in the screening field to develop what those guidelines should be for medical doctors. What should we tell a medical doctor who might not be a T1D-savvy endocrinologist, who might be a primary care physician? What can we tell them to do that will help them help their patient? Those sorts of guidelines are being drafted now. We, through our partners at Med-IQ, will work to disseminate that information to the health care provider community. In the short, not so far future, we'll be doing that.

That's how we can reduce DKA. Again, it's screening, education, monitoring. Educating patients and educating health care providers. Why is that important? Why is that important to a payer or to an insurance company? Well, there's a lot of evidence to show that DKA itself has some very serious consequences, the least of which is death.

But we know that if you have DKA and a diagnosis T1D, you're at risk for more DKA in the future. That means more hospital visits, more cost on the health care industry. We know that you have poor glucose control for the rest of your life. That means more doctor’s visits, more medications you might have to take to help improve your blood sugar or control your blood sugar.

All of these things associated with a single DKA event lead up to a cost for a health care agency, that we have funded researchers to really carve out, to do this cost effectiveness [analysis] to show what the true cost of DKA is. It's really not just the DKA event alone, which costs maybe a night in the hospital plus associated emergency room costs. It's the cost of the long-term complications that are linked to DKA that really drum up the costs.

This is how we can get the attention of the payers. JDRF has another group, our health care regulatory policy team, who specifically engage with payers to give them this information and to have them consider, "Well, why would we and should we reimburse for something like screening or reimburse for something like post-screen monitoring?" That's an active effort of colleagues on the JDRF team and colleagues outside of JDRF at pharmaceutical companies, or at non-profits or other funding agencies like the Helmsley Charitable Trust, the T1D Exchange, etc. It's really a community effort here, Mary. We know that the payers are a very important group that we have to bring along, as we move towards more general adoption of general population screening.

You mentioned the Fr1da study in Germany, which had remarkable results with education of caregivers, since it involved very young children. Can you talk about the researchers’ success with education and DKA prevention?

Programs like Ziegler’s in Germany, the Fr1da program and now its child, the Fr1da-Plus program, were screening the general population for risk of T1D, auto antibody screening, some genetics. [They] found that one: when they were telling parents that their child was at risk, this could cause anxiety and that anxiety was measurable. That anxiety could be mitigated by appropriate education of the parents, to tell them what this risk really means.

So, "I see that I have 2 or more auto antibodies. What does that mean for my child? My child will develop T1D tomorrow or in 5 years?" Beginning to teach the parents what their real risk is for their child, and what a life with T1D will be like. Now, remember, most people are diagnosed without knowing T1D is on the horizon. That means they enter a life with T1D and had to learn about blood glucose monitoring and diet and pumps and devices and all these things at once. That can be really, really stressful. We believe that if someone learns earlier, we can slowly onboard them to a future life as a T1D and make the entry much gentler.

Ziegler has shown that these sorts of education tactics really reduce parental anxiety around T1D and around risk screening. As such, these sorts of education programs—now the one that Ziegler developed is Germany-specific. You understand they all have to be geography specific. But every program we've touched has that aspect built in. The program in Israel that we're launching has a major education program for physicians and for parents and for the children. The ASK program in Colorado is a great example where education, also psychology, is built into their screening.