As we continue interviewing our 2019 DiabetesMine Patient Voices Winners, today we’re happy to feature a young man with type 1 diabetes who’s on his way to becoming an endocrinologist.
Please meet Dan Bisno, originally from California but now in his first year of medical school in New Jersey. He has also embraced the #WeAreNotWaiting mantra, building and using his own do-it-yourself closed loop system (aka Artificial Pancreas).
DM) Thanks for talking with us, Dan! Of course, we want to start with your diabetes diagnosis story…
DB) My diagnosis story begins at 11 years old in 2006, with my mom noticing how thirsty I was that summer. It came to a breaking point during a family dinner at a restaurant when my sister was served a larger glass of water than me. Apparently, I threw a bit of a temper tantrum, remarking, “I’m the thirsty sibling, not my sister!”
My mom took me to the pediatrician the next day. A blood sugar check on the pediatrician’s glucometer read, “HIGH.” My pediatrician informed us that I most likely had type 1 diabetes and scheduled us with the new onset team at Children’s Hospital in LA (CHLA) the following morning. That evening, my pediatrician gave us strict instructions to go to In-N-Out Burger and order a protein-style cheeseburger (a cheeseburger between lettuce, instead of a bun), which is effectively zero carbs. I like to think of this as both my last meal unaccompanied by a dose of insulin and the only time a doctor will ever prescribe a cheeseburger to their patient. The next morning my diagnosis was confirmed with a blood sugar of 614 mg/dL. Days later I started 6th grade with a backpack stocked full of supplies I was just learning how to use.
Anyone else in your family with diabetes?
I’m not aware of any family history of type 1 diabetes. However, interestingly, some of my family members have since tested positive for islet autoantibodies, which suggests that they may be at an increased risk of developing type 1 diabetes. My dad also has type 2 diabetes, so we talk about diabetes in general pretty often.
What tools do you currently use for your diabetes management?
For the past year, I have been using the DIY automated insulin delivery system known as “Loop.” I use an old Medtronic pump, a Dexcom G6 continuous glucose monitor (CGM), iPhone 6s, and RileyLink. Loop is a lifesaver! It still gives me just as much control as a non-automated system, but it significantly expands the functionality of my pump and CGM. I am able to set different blood sugar targets throughout the day, based on factors like my activity level, and the Loop app will actually adjust my pump’s basal rates to try and meet that blood sugar target.
I could write a long essay about why I love Loop, but my favorite thing is the feeling of safety overnight. I love having a system that watches my blood sugar when I can’t. When I began looping I used Nightscout to view my data reports, but I recently switched over to Tidepool after setting it up for the Tidepool/Loop study.
Why do you think Loop / DIY diabetes technology is so important?
The DIY community is amazing. They’ve filled a void in diabetes innovation and put pressure on the medtech industry and the FDA to work towards improving innovation and accelerate the regulatory process.
There have been so many different insulin pump options over the years. While they each have their own unique benefits, at the end of the day they all do the same thing: deliver insulin. We are still doing everything else manually. The innovation that REALLY mattered was moving at a snail’s pace. There were no fundamental differences in how I managed my diabetes, with respect to my insulin pump, in 2008 versus 2017. The DIY community changed that. They built not one, but multiple, closed loop systems to automate insulin dosing and delivery that use the continuous glucose monitor data and a plethora of other customizations.
These are not one-size-fits-all devices. They are truly personalized. But that’s only the tip of the iceberg. These DIY projects are patient-driven and software-upgradeable, so when people feel that updates need to be made, those updates can be incorporated into your DIY devices very quickly (within days or weeks). The alternative is waiting four years to get a new pump through insurance.
It’s all been driven by passionate individuals, right?
Yes! The people who make the DIY community thrive are volunteering their own time, outside of their day jobs, to help make the lives of people with diabetes easier. Someone once joked to me that the customer service at Loop is so much better than Medtronic. What they mean is that if you go to one of the DIY Facebook pages (e.g., “Looped”) and post a question, you will get immediate, valuable, caring feedback from the patient community. I’m far from advocating against regulatory bodies or randomized controlled trials. However, I genuinely believe the innovation that has come from DIY projects such as Nightscout (pulling CGM/pump data onto your computer, smartphone, smartwatch, etc.) and Open APS / Loop (automated insulin delivery with personalized targets) is years ahead of the multi-million (billion?) dollar diabetes device industry. The DIY community has made an important impact on that industry. It’s amazing to see what passionate patients and their loved ones can do – hence the motto #WeAreNotWaiting.
And you’re an aspiring healthcare professional, correct?
I just started my first year of medical school at Rutgers Robert Wood Johnson Medical School in New Jersey. Ever since I was about 13 years old, I have been telling my friends and family that I want to be an endocrinologist. I am fortunate to have an amazing endocrinologist to thank for being such an inspiring role model. After medical school I plan to do a three-year residency training program in pediatrics or internal medicine followed by a fellowship in endocrinology.
What did you do before starting Med School?
I spent two years working in type 1 diabetes clinical research at Children’s Hospital Los Angeles (which is where I was diagnosed, as mentioned earlier). I felt so at home working with patients with type 1 diabetes that it really confirmed my childhood aspiration to pursue a career in endocrinology and diabetes research.
I was fortunate that while working at CHLA I was involved in many different research studies that gave me a great introduction to the scope of pediatric diabetes research. I did a lot of work coordinating for TrialNet’s Pathway to Prevention study and various type 1 diabetes prevention studies. I also coordinated for various studies through the T1D Exchange, one of which was a CGM intervention in youth and young adults with type 1 diabetes.
Prior to leaving CHLA, I helped begin the regulatory process for various industry studies too. Lastly, I am collaborating with the
Do you have any specific hopes for when you enter the professional clinician world?
One of the things I look forward to as a future physician is to use my patient experience to be a voice for change in the medical community. In the immediate future, I want to get more involved with diabetes on social media. I’ve been a little intimidated to jump into it, but I am routinely empowered by the diabetes online community on Instagram and Facebook. Social media has actually had a significant impact on my mental health and relationship to diabetes during the last few years.
Have you been involved in any diabetes advocacy efforts?
My work at CHLA gave me the opportunity to collaborate with TrialNet’s UCSF chapter and some amazing JDRF Los Angeles staff members to bring diabetes risk screening through TrialNet’s Pathway to Prevention study to neighborhoods throughout the Inland Empire in Southern California – areas that CHLA had not previously been conducting TrialNet outreach events. This region did not currently have a JDRF chapter or any large TrialNet-affiliated research centers.
Teaming up with JDRF Los Angeles helped us reach many more families. We were able to offer TrialNet screening to these families without the need to travel far. Above all, I had a meaningful time getting to meet people, especially the new onset families, and talk about diabetes. Oftentimes it is the parents who are more in need of support from other families who “get it,” and this forum was very good for that.
What do you think represents the single biggest change in diabetes care in recent years?
The impact that continuous glucose monitoring has had on the way we talk about and manage diabetes. We have so much more data and useful information at our fingertips than ever before. While the use of CGM has dramatically changed the patient experience, my prior research work taught me that industry is a few years behind in adopting CGM data as a primary endpoint for clinical trials. Although, this does seem to be changing. I believe it is critically important to evaluate clinical trials with primary endpoints measured by CGM metrics, such as Time in Range and coefficient of variation, compared to just A1C or discrete blood glucose data. CGM data will tell us more about the benefits of innovations than anything else out there.
How has your own CGM experience been?
Personally, I started pumping a couple years after my diagnosis. While I absolutely loved the pump, I could not envision wearing anything else on my body. I felt that it would be too awkward to explain to my friends why I had pieces of plastic around my abdomen and arms. I especially did not want the embarrassment of a CGM alarm going off in class.
After one semester of college, my endocrinologist finally convinced me to take the dive into CGM with a Dexcom G4. I was instantly hooked. I gained so much more insight into how my body was responding to carbs, insulin, and activity. I not only felt safer, but also more engaged in my diabetes self-care. CGM triggered a cascade of events that got me interested in all aspects of diabetes care and diabetes research. The breadth of data from CGM also gave me a lot more comfort in adjusting my carb ratios on my own. I’ve become so dependent on it that it is hard to remember what it was like to manage diabetes before CGM.
What gets you excited as to diabetes innovations?
I think we are living in a tremendously exciting time for diabetes innovations. We now have an implantable glucose sensor and nasal glucagon on the market. These are both addressing unmet needs of the diabetes community. Furthermore, we should soon have multiple FDA approved automated insulin delivery systems available to consumers.
Diabetes innovations are a beacon of hope for most of us living with diabetes. They give us new ways to manage a disease that is inherently difficult, and make diabetes so much more bearable. I’m a bit of a diabetes tech geek, so I am especially excited about the increasing interoperability between diabetes medical devices, smartphones, and smartwatches. There’s so much to be excited about right now!
If you could speak with industry leaders, what would you suggest they could do better?
I have a lot of thoughts on this. While I am so grateful for how I have benefited from industry research and development, I know they can do better when it comes to access to medications and diabetes tools. This past year there has been a lot of necessary attention on the rising cost of insulin and the heartbreaking, deleterious effect this has had on the patient community. It is clear that there has to be a paradigm shift in the way diabetes in treated. Right now it is the “haves and the have nots” – those who can afford rapid acting insulin, CGM, and pump therapy, and those who are unable to afford these tools. It is therefore no surprise that diabetes is the leading cause of so many traumatic medical complications. But it does not have to be this way.
While media or other pressures may compel industry to launch patient discount or rebate programs, these are still unreliable and inconsistent ways to survive on life-saving tools and medication. Change needs to come earlier, likely from the outset of drug or device development when calculations are performed to estimate a theoretical price point. Given the role that industry plays in choosing which drugs to pursue, pricing drugs, etc., I believe industry must play a bigger role in narrowing this access gap. There must be a better balance between industries’ desire for profit and patients’ need for access.
Have you personally experienced any access or affordability issues related to diabetes?
I am fortunate to have had reliable insurance coverage and access to diabetes supplies my whole life. One of the frustrations I have faced is the limitations that insurance formularies place on consumers’ choices. It should not require endless insurance company appeals (with uncertain results) to get coverage on whichever pump, CGM, insulin analog, test strip, or other supply that you have been using or want to use.
This past year, I wanted to continue getting coverage for Contour Next test strips because the Contour Next Link meter syncs directly to my insulin pump. My insurance company only had One Touch test strips on their formulary. It took multiple appeal letters to get the test strips I needed. These types of routine diabetes issues deter me from asking my doctor for a prescription for drugs like Afrezza or Fiasp because I have an expectation of the ensuing hassle dealing with my insurance provider. Needless to say, costs without insurance coverage are prohibitive.
Last not least, why did you decide to apply for the DiabetesMine Patient Voices Contest?
Because I am passionate about diabetes innovations and I want to contribute and learn from the leaders that make it happen. I’ve learned so much not only from my personal diabetes experience, but especially from the patients I worked with at Children’s Hospital Los Angeles, the diabetes Facebook groups, the TypeOneNation events, and more.
I want to use my voice to help drive innovation in the right direction for all people with diabetes. If the past couple years have taught me anything, it is that we are living in a “golden era” for innovation. However, I still think we have only touched the tip of the iceberg for diabetes innovations. I am excited for what the future holds. I can’t wait to meet others who have a shared passion for diabetes and D-innovation. I’m especially looking forward to hearing perspectives from industry leaders. Sometimes it feels like the medtech industry could have made better design choices. It is hard to tell if they made things a certain way based on patient feedback, clinician feedback, or FDA requirements. DiabetesMine University will be a great opportunity to glean more insight into these important decisions. Hopefully I can pay it forward with my patient perspective!
Thanks, Dan. We can’t wait to meet you in November!