Everyone with diabetes should have access to CGM: Dr. Aaron Neinstein’s take

WRITTEN BY: Todd Boudreaux

Dr. Aaron Neinstein is an endocrinologist and Associate Professor of Medicine at University of California, San Francisco (UCSF) and Director of Clinical Informatics at the UCSF Center for Digital Health Innovation . He was also on the founding team of Tidepool. Dr. Neinstein was one of four featured experts during Beyond Type 1’s #KnowledgeDrop Series , discussing the future of diabetes care, focusing specifically on technology, data, and emerging therapies.

How did you get into endocrinology?

I spent a summer in college with Dr. Fran Kaufman, who was at Children’s Hospital LA in Pediatric Endocrinology, and who became an important mentor for me. I worked with her in the diabetes clinic at Children’s LA and she brought me to Camp Conrad Chinook, the diabetes camp in Southern California, to help out on the medical staff. Working with teens with diabetes resonated with me deeply – both in the person to person connections and the fascinating science. The following summer I worked as a research assistant at MiniMed in Dr. Udo Hoss’s lab developing the first CGM (continuous glucose monitor).

I was an American Studies major at Northwestern, but after working with Fran, I knew I wanted to apply to medical school and be an Endocrinologist. I actually wrote my American Studies honors thesis on “Cultural and Social Barriers in Treating Type 2 Diabetes.” As I went through my medical training, I got involved in technology by helping lead the Epic electronic health record implementation at UCSF (Epic is a prominent electronic health record vendor). During my endocrine fellowship, I was astounded by the inefficiency of separate CGM and insulin pump printouts. Along with Drs. Saleh Adi and Jenise Wong, I was fortunate enough to meet Steve McCann and Howard Look, and the group of us got together and started Tidepool.

Did you grow up in the Bay Area? Where are you from?

L.A. I came up to UCSF for my medical residency in 2007, met my eventual wife Karen here, and found a real home in the mission of UCSF.

Can you talk a little bit about the effect of technology on healthcare and diabetes specifically?

What has proven to be really neat is that the diabetes field is on the leading edge for the use of technology in healthcare. Everyone got excited about home monitoring of health the past few years with wearables. Well, people with diabetes have been doing home monitoring for decades – the first home glucose testing was in the ‘70s. Telehealth – 1991 was the first publication of modem transmission of blood sugars for diabetes care in France. Recently, closed loop insulin delivery probably represents the first automation of delivery of a potentially life-threatening drug. In all of these areas – home patient self-monitoring, telehealth, automated drug dosing – diabetes was first. So it’s really a privilege for me from a clinical perspective. I love being part of the diabetes community and being part of thinking about what care delivery might look like for people with cancer and asthma and rheumatoid arthritis and Crohn’s disease – all of these other conditions where all of those principles could be applied but they’re just not as readily apparent or available as they are with diabetes.

What’s exciting is where we can go next as all of these pieces come together. Most hospitals went onto electronic health records between about 2010 and 2018 because there was a big stimulus through the HITECH Act. The U.S. Government put about $30 billion into subsidies for electronic health records (EHRs). And so we went from something like under 10% of hospitals on EHRs to more than 90% and almost ubiquitous use in that span of less than 10 years. This means that traditional health information and traditional care delivery are now digitized.

So now what? What analytics can we do now? How can we change the way we deliver care to a population of people with diabetes? How can we deliver virtual care and personalize it for the individual? You have to go through that first transition of paper to digital and then learn to use digital to make a meaningful difference. At UCSF, we launched our Center [for Digital Health Information] right after we finished our EHR implementation and recognized the need to partner with Silicon Valley, to partner with tech companies to leverage our new digital capabilities to deliver health care different and better. [The CDHI] was actually founded in 2013, so helping to launch Tidepool was one of our first projects.

Can you talk more about the Center for Digital Health Information (CDHI)?

What’s fun is that our team not only builds new technology to improve patients’ lives, but we also partner with other companies working on similar challenges. We have had partnerships with GE, Cisco, Samsung and several startup companies, working to develop new products and solutions. We bring these new technologies into UCSF to directly impact patient care in positive ways.

Our team works in a lot of different areas, but the underlying philosophy of our work is two-fold: What do we have to do to get the right health care to the right patient at the right time? What do we have to do to create a more seamless, patient-empowered care delivery system? So that it’s not going into the doctor’s office for 15 minutes a couple times a year, but where the relationship is a more continuous and informed by all of these different data sources.

Are there any solutions for getting advanced tech to people who can’t afford it or who don’t have access to as much information?

I’m hopeful that digital health can actually create a more equitable environment with more access to healthcare for people who may not have it today. Many of the barriers of having to leave work, drive and pay for parking, find a doctor in network – those might be overcome by digital health. It will require that everyone have access to smartphones and broadband, and also that people building digital health tools think about the full range of users. That’s an important piece of all of our product design at UCSF – considering different ages, languages, cultural backgrounds. As far as access to expensive diabetes devices goes… I wish I had the answer. I hope as competition increases, that costs will come down. One recent improvement in access has been getting CGM devices into pharmacies instead of being considered durable medical equipment.

What are some other next generation technologies that could make a difference?

Of course, continuing improvements in closed loop therapy, with Control-IQ from Tandem coming soon, and others soon after. The Control IQ clinical trial data showed people going from a time in range of around 60% to 70%, so the question is what’s going to get people to 80% or 90%?

There’ll be lots of incremental improvement stacking up on each other. Dual hormone systems. Faster acting insulin. When an implantable CGM gets to 180 or 365 days, maybe that will make a difference. Or single site rather than dual site (pump and CGM), to resolve the lack of good infusion sites, which can be a problem for many people. I would also love to see additional data sources added in to improve the algorithms – activity levels from wearables, menstrual cycle data – and to develop algorithms that actually learn over time about the individual user, instead of just responding to recent and current BG levels. And most importantly, continuing to iterate on how to minimize the user effort of using these technologies to reduce the burden of living with Type 1 diabetes.

Is there anything else you’d like to touch on?

I’ll double down on CGM: I believe that any person who is newly diagnosed should ask for a CGM right away. There are a lot of medical professionals who will recommend you get an insulin pump, and as great as insulin pumps are as a tool, at the end of the day, they’re just a different method for delivering insulin, whereas there’s no other tool that replaces CGM as a tool to have a continuous biomarker – glucose – to know what’s going on in your body every moment.

So I think every single person with Type 1, and frankly, most people with Type 2, should be advocating to get a CGM right away.

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Everytime I read these numbers, I find them very off. I feel like I still have a long way to go in improving my control. I don’t consider myself a model diabetic by any reason. I eat carbs, and thoroughly enjoy my lifestyle. I still find I can keep myself in range ~90% or more, though. I’m looking for the tool that will give me that last ten percent, without having to squelch my foodie ways.

I love Tandem, and I’ve been a big proponent for them… but I’m curious what their parameters were for choosing participants. Did they intentionally set the bar low? Is this the “normal” for the community, and I just didn’t know it? 40% of your day seems like a ridiculous amount of time to be high or low. Maybe that’s just how the data averages out with some participants who were never in range at all/weren’t trying beforehand?

But yes, knowledge is definitely power to do better here. I’m only a few months into the CGM thing, and I’m still fascinated by how quick (or slow, in some cases) the numbers change.

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YES! I am so glad to see someone mentions menstrual cycle data!! By far the biggest under-appreciated factor that can have a major and prolonged impact on control.

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Depending on what your target range is, most people definitely are not meeting your level of control. Everyone on TuD, in general, tends to skew towards very tight control compared to the average person with diabetes. I have good diabetes control compared to average, but I’m on the lower end of control compared to most others on this site. I can’t achieve 90% readings in range; more like 70-75% most of the time with a range of 4-10 mmol/L or 70-180 mg/dl and lots of unrelenting efforts.

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I absolutely agree. I love my pump, but I will never ever be without a CGM never. my diabetes priorities.

  1. Insulin
  2. Syringes
  3. CGM
  4. Pump
  5. everything else
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This is actually pretty normal. Most diabetics are not meeting the goal of a sub-7% A1C and I myself am only just barely making it to that 70% time in range with 70-180 parameters. A lot of us who are active in the DOC are dedicated to tightly controlling our BG’s but most people in the real world can’t devote as much time and effort to their diabetes as is required to get stellar numbers and for people like @Jen and I who do put in that effort but our bodies don’t cooperate it’s actually pretty neat to see clinical data coming out with better %'s.

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I’m afraid I came across judgemental, when that is anything BUT how I feel. I had an A1c over 13 when I went to my first endo appointment in 18 years. A 9% was the best I ever managed with the home test kits. I was just skating by on my own, trying to survive, and not giving it the time and energy I should have.

It’s only recently that I’ve become obsessive about it… Because I’m scared! After 30 years, complications are starting to catch up with me in my eyes and kidneys. I love my life now, though, and I REALLY want to stick around to enjoy it. I was a lot more careless when I didn’t have so much to lose.

And trust me, I know it’s not easy.

I was honestly surprised by the numbers for several reasons. One, I definitely have a skewed sense of “normal” because those who are most vocal about their numbers seem to be the ones in the best control. But mostly, because I’ve tried very hard in the past to get involved in diabetes research, and I could never qualify, being “uncontrolled”. That’s what I meant by “intentionally setting the bar low”. I assume they must have opened the study to a more broad range of starting A1c.

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I was replying to both the normal A1C’s and the “low bar” for studies. I’ve applied for several studies and my A1C’s have not been the sticking point on any of them. In fact for new treatments they seem to want your A1C to be a little higher either so that if the treatment works it shows “look we did it, these people are in better control now” or because a slightly higher A1C is more representative of the average diabetic.

I have also found this to be true especially with drug studies. If your numbers are “to good”, you don’t get in because they want to see the improvement. And yes, I suppose if the numbers are way to high, a person might not get in from a safety reason. But I have found all the studies I have done to be fascinating and I learn a lot.

Ya sure, they won’t even let us have the insulin they make for five dollars a vial unless we pay $287

If one of us dies cause well thats OK good lesson to the others to try harder at gettin money for them.

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