My last Virtual ADA 2020 post focuses on standouts during sessions that stuck with me.
The first spotlights the importance of Strengths Based Diabetes Care in teens with t1 diabetes. The second highlights utilizing both diabetes and personal health data from apps and diabetes tech, and incorporating apps into clinical practice.

Diabetes Resilience

The dictionary defines resilience as the capacity to recover quickly from difficulties; i.e. toughness.
My definition of resilience: fall down seven times, get back up eight.

Diabetes is hard work, incredibly complicated; ridiculously expensive, never ending, and a different beast daily. And just when you think you’ve figured it all out — diabetes changes the rules of the game.

In order to live well with diabetes, resilience is paramount, but not a given - requiring cultivation, positivity, and team work between healthcare professionals, family members and the person with diabetes.

When I watched Ph.D. Marissa Hilliard’s presentation focusing on Diabetes Resilience and changing the behaviors, tone and language of diabetes providers (and caretakers) to cultivate diabetes resilience in teens with T1s, I was ecstatic!
And as a person living with diabetes, I felt heard and understood.

Hilliard pointed out that while self-management and tracking blood glucose are the foundations of diabetes care, they aren’t the only contributors — so when the person living with diabetes experiences numbers they don’t like, they hold themselves responsible and stated: these frustrations, worries, fears can be overwhelming and exhausting. These demands add up and take their toll on PWDs - and can lead to diabetes burnout, diabetes distress, (which is estimated to occur in 1/3 of teens living with T1), elevated mood concerns/depression. Is it any wonder that A1cs aren’t what HCPs recommend?

While some of the above is part of being a teen — other parts are a direct result of diabetes conflict (parents), diabetes distress, and diabetes-related depression.
IMO, if the above issues aren’t dealt with now - they become even more problematic later in life. 

Hilliard’s RAD Lab (Resilience and Diabetes Behavioral Research) focused on two studies looking at what diabetes healthcare professionals can do to help all youth with t1d do well via strengths based interventions created to support the burden of t1d.

1. The Diabetes Strengths Study – In this study, diabetes medical providers (NP, MD) started each appointment focusing on the strengths of the teen with T1D first, while simultaneously setting examples for parents to do the same. It was designed to change the behaviors of Providers and shift the focus/tone of clinician encounters to reinforcing strengths.

Teens and parents noticed the HCP dialogue changed, becoming more focused on emotional wellbeing than a1c.
HCPs noticed T1D teens were less stressed at clinic visits, more motivated to come to clinic and more open to learning during follow-up appointments.

2. Type 1 Doing Well Study – Stand Alone App

RAD Lab created a mobile health app targeting parents of teens with t1 on how to effectively praise, engage, and dialogue with their T1D teens daily re: everyday diabetes strengths.
App tools included weekly summaries; text messaging library between parent and teen, and cool diabetes related emoji packs.
The app retention rate was 98% and helped parents remember the good diabetes days as well as the challenging ones.
A quote from one of the T1D teens: The app reminds parents to recognize what teens are doing well and I like it.
WOW.

Integrating Diabetes Apps and Digital Tech Into Practice 

Rachel Stahl, MS, RD, CDN, CDCES discussed apps and their potential role in diabetes self-management - including strengths and challenges of using apps in clinical practice. In 2007 the first iPhone with apps hit the market, and in 2010 “App” was named word of the year. Today, 81% of the world owns Smart Phones, 3.8 million apps are currently available — including over 300,000 health apps with 1/2 billion users.

Diabetes App Strengths

1. Easy access and use— the majority being free/complementary as part of a connected device or at a minimal cost.
2. Data gathering/sharing made ease for the PWDs using an app.
3. Apps allow for remote coaching in all dimensions and provide diabetes support between visits.

Diabetes App Challenges

Tech issues: Software Updates can wreak havoc with health apps — impacting performance, introducing bugs, and causing features (AND DIABETES DATA) we rely upon to disappear. Some apps have yet to be integrated with the newest version of said smartphone(s).

Social determinants: Health literacy/food insecurities have the potential to limit patient engagement with the app.

Health & physical limitations — Hearing, vision, or dexterity issues also cause the person using app to give up or not participate in the app at all.

Not enough Diabetes App studies and randomized controlled trials, and FDA guidelines don’t exist.

Dr. David Ahn, MD, opened his Taking the Technology Plunge - Integrating Digital Tech Into Practice, part of the session by pointing out the impact of stress on blood sugars in our world since COVID-19. As a person living with T1D whose Time-In-Range was less than impressive during the first 3 months of lockdown, his words meant a lot.

Speaking of COVID-19, he discussed the increase in telemedicine globally since the pandemic and how diabetes care is uniquely suited to Telehealth - diabetes care is centered on self-management and uses diabetes tech devices/apps to generate, gather, and share data between users and HCP.

Ahn broke down gathering diabetes data at medical appointments into three categories:

• Standard: Meter down-load, vitals, a1c.
• Premium: Takes Standard a few steps further to also include: CGM data, Insulin pump downloads and additional lab work.
• Deluxe: Adds data from food diaries, pump history, med changes, MDI history via smart pen download or logbook.

He also pointed out that Passively Collected Data (data collection via sensor without user intervention) is preferred over Actively Collected Data - which is self-reported by the user and allows more margins for error/gaps in data. He then went on to discuss the benefits and drawbacks of D apps.

Benefits

• Allows Smart phones to be used as diabetes data hubs at our fingertips, enabling us to transmit our data to both the cloud and our provider.
• Some apps offer the user better interactions with their data than the actual device. Example: Dexcom Clarity app users are more in-tune with blood glucose Time-In-Range than those using only the Dexcom Receiver.
• Data aggregation software like Glooko and Tidepool allows for stacking of data all on one screen.

Drawbacks

• Most (not all), companies aren’t openly sharing data in both directions — actively pooling data, but not sharing, creating data silos in the process — and creating issues for both PWDs and Providers.
• Open data improves decision making, simplifies data transfers, and makes the lives of people with diabetes easier.
• If data is siloed to each individual device, PWDs must bring all D devices with them to appointments. Seriously? Because people with diabetes don’t have enough crap to lug around?
• Data silos can also limit PWDS choice re: use of third party apps.
• For Providers, data integration with electronic medical records is an issue, as is insurance reimbursement.

I NEED all my diabetes devices to communicate. I NEED diabetes device manufacturers to start openly sharing data.

Bottom line, while I love that diabetes technology helps me and my diabetes, as an end user who pays thousands for my diabetes tech yearly in deductibles and co-pays, I don’t appreciate the limits and silos forcibly imposed on PWDs by those manufacturers pooling data, but refusing to openly share. PWDs deserve and demand better.

Toward the end of each ADA Scientific Sessions, for 14 years now, the diaTribe Foundation and TCOYD co-host a panel discussion by notable healthcare professionals, researchers, industry leaders, and advocates recapping the conference.

This year, the 2020 Diabetes Forum panel convened as usual to share their thoughts and takeaways regarding several key themes discussed at the ADA. This forum is a really good way to get some perspective on what has been discussed at the ADA, which by the end of the week can leave you feeling like you’ve been drinking from a firehose.

Unlike years past, the 2020 Diabetes Forum panel met virtually and their observations could be heard by anyone who registered in advance for webinar access.

This year’s Diabetes Forum panel participants were:

• Dr. Vanita Aroda of Harvard Medical School
• Dr. Will Cefalu of the NIDDKD
• Dr. Irl Hirsch of University of Washington Medicine Diabetes Institute
• Dr. Jeremy Pettus of University of California, San Diego
• Dr. Eugene Wright of Duke Southern Regional AHEC, Fayetteville, North Carolina

Over the course of two hours the panel touched on the rise in telemedicine use due to COVID-19, CGM use and AID systems, remission in type 2 diabetes, their hopes for the coming year, and more.

I was a bit surprised by their thoughts on where diabetes care should focus next.

Panel members talked about shifting diabetes care away from focusing solely on glycemic control and toward expanding the focus to include cardiovascular, kidney, and metabolic health.

Dr. Eugene Wright summed up this new direction by saying, “We need to think more comprehensively about the cardio-renal-metabolic systems and not just the A1C.”

People with diabetes run a higher risk of developing heart disease, hypertension, kidney disease, and renal failure. Focusing solely on glycemic levels does nothing to address these other risks that can, at their worst, become fatal.

The panel went on to discuss some of the implications of this shift in focus.

Glycemic control remains important. No one suggested that we abandon it, but the consensus seemed to be that it shouldn’t remain alone at the center of diabetes care. Both CGM and AID (automated insulin delivery systems, or the artificial pancreas) are seen as becoming more generally available, especially in the US. They have regulatory clearance. Device companies are partnering to improve algorithms and interoperability. And the expectation is that we’re well on the way to having AID systems that will keep glucose levels in range without requiring much active management by the person with diabetes or their caregiver.

With the development of GLP-1 agonists and SGLT-2 inhibitors, diabetes care can now have measurable positive impacts beyond glycemic control. These drugs are proven to go beyond reducing A1C to supporting cardiovascular health, renal health, and weight loss in people with type 2 diabetes.

Panelists touted the potential for endocrinologists, cardiologists, and nephrologists to work together addressing the whole of patient health. Lines between medical disciplines will blur as GLP-1 agonists and SGLT-2 inhibitors become more commonly prescribed. Traditional silos of care will break down, leading to better overall health care for the individual.

Panelists also saw this wider focus on health supporting a patient-centric approach. These new therapeutics can be chosen to address risks specific to the individual.

We’re still a way off from this fully integrated approach. Panelists pointed out that education is needed for both medical professionals and patients to understand the benefits of looking beyond glycemic control and the aim for supporting a better overall quality of life and health. Often medical professionals have knowledge gaps when it comes to conditions outside their specialties. Patients who have been taught to focus on glycemic control above all else need to understand the long term importance of managing their cardiovascular and renal health. And, of course, standards of care and reimbursement schemes for diabetes care need to open up to become less glycemic-centric.

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You can watch the complete replay of the 2020 Diabetes Forum online at https://tcoyd.org/2020/06/2020-diabetes-forum-video-replay/. Jump ahead to the 38th minute for the start of the panel discussion. 

As you would expect there was a lot of discussion about diabetes tech at the 80th American Diabetes Association Scientific Sessions.

Automated insulin delivery systems, also known as the artificial pancreas, received attention. So did insulin pumps, smart pens, and continuous glucose monitors. With algorithms becoming more common, discussions of artificial intelligence and machine learning also found their way onto the agenda.

But the one tech-focused session that has stayed with me in particular was a debate over The Use of CGM in Type 2 Diabetes—Is There Value? Not so much for the arguments made on either side, but rather for the thinking behind them.

I won’t lie, the provocative title initially drew my attention. But it was the argument against the proposition that has kept me thinking about it for weeks after. The thinking behind both positions, for and against, made me reconsider my own thinking—not just on the use of continuous glucose monitors (CGM), but on the use of any diabetes tech.

Benefits: Studies Support of the Use of CGM

CGMs are unquestionably seen as beneficial for tight blood glucose management and increased time in range—for people living with type 1 diabetes.

For people with type 2, somehow, questions remain. This, despite a number of studies that demonstrate better A1C results for people with type 2 diabetes using CGM, whether they use insulin or not. There’s even a small study demonstrating benefits of CGM use for people with pre-diabetes.

One study, The Effect of Real-Time Continuous Glucose Monitoring on Glycemic Control in Patients with Type 2 Diabetes Mellitus, found that people with type 2 diabetes improved their A1c by 1.0% on average. These results came from the intermittent use of real-time CGM readings (two weeks on, then one week off) over a three month period. Another study looking at the Short- and Long-Term Effects of Real-Time Continuous Glucose Monitoring in Patients With Type 2 Diabetes found that in addition to improved glucose level readings during this three-month study, people participating in the study sustained their improvement in A1C during a ten-month follow up period—without a CGM.

Both of these studies focused on insulin-using people with type 2 diabetes. Could using a CGM motivate a person to make lifestyle changes like eating fewer calories and exercising more? Yes, according to a study called Use of a Real Time Continuous Glucose Monitoring System as a Motivational Device for Poorly Controlled Type 2 Diabetes, which showed that CGM can be effective in measurably reducing A1c.

What about people diagnosed with pre-diabetes? A small study called Self-Monitoring Using Continuous Glucose Monitors With Real-Time Feedback Improves Exercise Adherence in Individuals With Impaired Blood Glucose included both people diagnosed with pre-diabetes and type 2 diabetes. Participants were taught how to monitor their exercise and glucose levels, and set goals. About half of the participants also used CGM. The group that used CGM demonstrated stronger engagement in their exercise program than those without.

Using diabetes tech, including CGM, provides benefits to the individual. Diabetes tech can engage people to become more active in and aware of their diabetes care. And the easy data sharing that comes with a cloud-connected device can strengthen ties with their medical teams.

These benefits have been measured and reported. But how valuable are these results?

Value: A Reexamination of the Use of CGM 

We often look at diabetes tech in terms of a cost-benefit analysis (CBA), examining the benefits the tech produces against how much money it costs to obtain and use over time. The benefits of CGM are expressed in terms of lowering A1C, increasing time in range (TIR), and/or avoiding hypoglycemic episodes. The costs are discussed in terms of dollars paid in a year or a lifetime.

While the benefits data is quantitative and consistent, cost estimates vary widely. Annual cost estimates for CGM run from just under $5K to over $11K. This inconsistency leads some to reconsider the universal applicability of the cost-benefit analysis for CGM.

When we shift focus to the value provided by CGM use in Type 2 diabetes (or with any type, really) using a cost-effectiveness analysis, the discussion opens up to a more nuanced picture.

A cost-effectiveness analysis (CEA) looks at value by identifying the option (among several) that maximizes “health” within a budget limit. One way to think about this is to ask “How would you spend your last healthcare dollar for diabetes care in order to get your best result?

Against the backdrop of continually rising healthcare costs (including rising insulin costs) and the economic downturn resulting from the COVID-19 pandemic, economists see healthcare costs on an unsustainable, ever-rising trajectory.

There are very real limits to how much healthcare we (as individuals, societies, and governments) will be able to afford to pay for. To avoid bankruptcy we need some new thinking behind our decisions when it comes to healthcare spending. A value-based perspective is worth examining.

In discussing CGM use from a value standpoint, other questions, not necessarily examined in the studies available, demand attention.

The first of these questions is whether glycemic control is the most pressing health need. If not, what is most pressing? Cardiovascular health? Kidney function? Stress management? Something else?

The most pressing health need then begs the question of how best to address it. What treatments and approaches are effective and available? Are there supports needed to ensure the treatment is followed? How easily can these supports be accessed by the individual? CGM might, or might not, be the answer.

The effect on quality of life also needs to be examined. Does the treatment come with psychological or physical burdens? How can these burdens be easily addressed? Are the benefits of the expected result greater than the burdens and demands of the treatment?

And last, but not least, cost needs to be considered. What price will we pay?

Only after this more-complex examination can an individual decision be made.

Decision Making: Diabetes Tech Use Is Not a Yes or No Proposition

More effort is needed when deciding when and whether to use diabetes tech than just asking a yes or no question. While understanding the benefits is important, so is understanding the value that can be had.

This more complex approach comes with wide reaching implications for healthcare decision making. Decisions may take longer to make. More factors will be taken into account. Gaps in care support will become more apparent. Less optimal treatments (from a benefits point of view) may be used because they are more easily tolerated, available, and/or affordable. 

The upside of taking the extra time and effort to work through all these considerations is that the resulting decision is more likely to be more individualized. Such an individualized approach, one that honors what is valuable to the person, has a greater probability of improving that person’s quality of life than a decision based solely on the benefits found in a study that may or may not accurately reflect the person’s own health status.

It was encouraging to see this topic being covered at ADA and research being conducted to better understand this more complex analysis of value. As healthcare systems become more financially stretched, we need to refine these approaches, so that we have a better way to determine value and advocate for technologies in diabetes. 

Healthcare disparities in diabetes management facing African American and Latino minority populations exist across the board for all ages and diabetes types.  Not only do they exist, those disparities lessen the quality of life in diabetes minority populations and shorten them.

I attended sessions on this topic at the recent ADA Virtual Scientific Sessions and what I learned about minority disparities in diabetes care made me incredibly angry. Things have to change.

And I found hope where I didn’t think I'd find any, thanks to the dedication and hard work of the Presenters implementing change and fixing what’s broken. Here are my key takeaways from the first of these sessions.

Community and Family Based Strategies to Improve T1 Diabetes Management in African American and Latino School Aged Children

Dr. Ashley M. Butler - Texas Children’s Hospital/Baylor College of Medicine

Dr. Butler’s research focused on the inordinate amounts of social risk plaguing African and Hispanic children with diabetes in the US, resulting in elevated blood sugars & poor glycemic control at one year post diagnosis of T1D. Early intervention and support for T1 minority youth is paramount in preventing diabetes complications before they occur. If early intervention doesn’t happen, the diabetes burden to children with diabetes and their families is devastating.

Roadblocks

Employment Challenges: Minority parents work environments are often more restrictive and less flexible re: daily communication with their T1D child’s school , tracking blood sugar via an app and having 504 plans in place.

Minority parents aren’t always aware of the laws that place their children at an advantage to have access to resources in school settings.

Social integration can cause additional challenges. Minorities are less likely to integrate or be involved within the diabetes community and less likely to interact with other families living with diabetes.

Fixes

According to Dr. Butler, Tailored Community Outreach can be used linking families to community based resources and events with culturally inclusive language and imagery.

Social needs screening and in-home behavioral interventions by multidisciplinary HC teams utilizing their areas of expertise and innovation to work together to guide families and create community outreach events.

Providing low-intensity social/behavioral support resources for families with limited time that include links to personalized resources, video conferences and other computer-based interventions.

Disparities in Delivery of Care in Diabetes Strategies for Underserved/Underrepresented Young Adults Living with Diabetes - Hispanic and African Americans

Shivani Agarwal - Albert Einstein College of Medicine

Diabetes or not, young adults are developmentally unique and vulnerable, no matter their minority status.
Young adults with diabetes face multiple transitions. Transitioning from diabetes children’s services to adult services, increased glucose and increased A1Cs -  along with the added dynamics of being a teenager and the need for independence.

Add ethnic minority status to the all of the above and the vulnerabilities increase exponentially.
Minority young adults are the largest growing diabetes population in the world, with Black, Hispanic, Indigenous, and other youths of color being diagnosed with both t1 and t2 at much higher rates.

Roadblocks and Obstacles

Being a minority teen with diabetes can itself be a roadblock.
According to the data, non-Hispanic Black teens and Hispanic teens struggle more with lower socioeconomic status, higher A1cs, trauma from unaddressed childhood events, lower health literacy, and drastically lower diabetes technology use than their White diabetes counterparts.

Racial diabetes technology disparities are real and exist in the US and internationally among both youths and adults with diabetes.

As diabetes tech options improve, the gaps will continue to grow if healthcare professionals aren’t cognizant and halt their own biases and figure out solutions now.

Dr. Agarwal referred to the Closed-Loop trial in the UK that examined provider perceptions re: who they felt were “appropriate” candidates for closed loop technologies. YEP, race and implicit bias were both factors.

The providers were honest and admitted they didn't offer tech to their underserved populations because “they didn't think they could handle it.”

Fixes

HCPs must become culturally competent, with training in cultural demographics and norms of their patients. The need to effectively learn to communicate and engage with young adults with diabetes and their families re: diabetes tech and diabetes support. And incorporate motivational interviewing techniques like "show N tell”, and offer continuing diabetes education and guided orientation to help young adults transition from peds to adult diabetes practices. 

Lastly, healthcare providers need to know where the young adults with diabetes they engage with are coming from.

Addressing Latino Diabetes Disparities Through Multi-Level Interventions

Dr. Arshiya Baig - University of Chicago

Dr. Baig began her talk by stating that the US Latino population is growing, currently encompassing 16% of the population and projected to be 1/3 by 2050.

US Hispanics countries of origin vary, with the largest population of Hispanics being Mexican Americans, who are also experiencing an increase in diabetes diagnoses in the US.

19% of Mexican Americans in the US currently live with diabetes and only one-third of Hispanics achieve “optimal glycemic control.”

Hispanics with diabetes are twice as likely to develop retinopathy than non-Hispanic Whites and are 40% more at risk when it comes to developing kidney disease.

Fixes

Dr. Arshiya Baig  flipped the barriers by utilizing community-engaged research methods in South Lawndale (Little Village), a community that is 83% Latino and 76% Mexican.
Not only did she and her team engage with the community, they worked alongside them, utilizing community resources — designing and implementing culturally informed, supportive behavioral intervention programs.

They formed a Community Advisory Board (CAB) who worked in tandem with diabetes and healthcare professionals and created a church-based diabetes education program, led by trained lay leaders.

The resulting 8-week church based type 2 diabetes self-management diabetes intervention class called: Imaginate Una Buana Salud aka, Picture of Good Health. 100 participants attended eight weekly 90 minute classes focusing on support, diabetes education and patient navigation resources that were made available to the whole community. At the 6 month follow up, people in the class were eating better and exercising more.

The CAB (Community Advisory Board) also helped in creating a Cultural Competency Training program for providers called Local Patients, Local Stories.

As a result, HCPs became more aware of barriers including their own personal biases and stereotypes. This changed the cadence of the healthcare professionals practice — resulting in more patient centered approaches, streamlined care coordination of care, better quality of care, and better patient outcomes.

As I said at the beginning of this post, things have to change. These sessions helped me learn more so I can help make things different and I hope this post did the same for you.