Diabetes Voices Winner: Aspiring Endo and DIY Looper - stoltejoyagoint
DM) Thanks for talking with us, Dan! Course, we want to bulge with your diabetes diagnosis story…
DB) My diagnosis story begins at 11 age 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 meth of water than me. Apparently, I threw a little of a snappishness tantrum, remarking, "I'm the thirsty sibling, not my sister!"
My mom took me to the pediatrist the next Day. A line sugar check on the pediatrician's glucometer read, "HIGH." My pediatrician informed us that I nigh possible had typecast 1 diabetes and scheduled us with the new oncoming team up at Children's Infirmary in LA (CHLA) the pursuing morning. That evening, my pediatrician gave us self-disciplined instruction manual to go to In-N-Out Beefburger and order a protein-elan cheeseburger (a cheeseburger between lettuce, instead of a bun), which is effectively zero carbs. I like to think of this as some my last repast unaccompanied past a dose of insulin and the only clip a doctor will e'er prescribe a cheeseburger to their patient. The next morning my diagnosing was inveterate with a blood glucose of 614 mg/dL. Days later I started 6th plac with a back pack stocked full of supplies I was just learnedness how to use.
Anyone else in your house with diabetes?
I'm not aware of whatever family account of type 1 diabetes. However, interestingly, some of my family members suffer since tested sensationalism for islet autoantibodies, which suggests that they may be at an increased risk of developing type 1 diabetes. My dad also has typecast 2 diabetes, sol we discuss diabetes in general pretty often.
What tools do you presently use for your diabetes management?
For the past twelvemonth, I have been exploitation the DIY automated insulin delivery arrangement called "Loop." I use an yellow 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 arsenic a not-automated system, but it significantly expands the functionality of my pump and CGM. I am able to set different blood sugar targets throughout the twenty-four hour period, based happening factors like my activity stratum, and the Loop app bequeath actually adjust my ticker's basal rates to try and meet that blood glucose target.
I could publish a long essay most why I dearest Closed circuit, but my favorite affair is the touch sensation of safety overnight. I love having a system that watches my blood glucose when I can't. When I began looping I used Nightscout to view my data reports, but I new switched all over to Tidepool after setting it functioning for the Tidepool/Coil study.
Wherefore do you think Loop / DIY diabetes technology is so important?
The DIY community is amazing. They've occupied a void in diabetes innovation and put pressure on the medtech industry and the FDA to work towards rising design and accelerate the regulatory litigate.
There have been so many another different insulin pump options over the years. While they each have their have unique benefits, at the final stage of the twenty-four hours they totally act the identical thing: deliver insulin. We are still doing everything other manually. The innovation that Real mattered was moving at a snail's pace. There were zero fundamental differences in how I managed my diabetes, with honour to my insulin pump, in 2008 versus 2017. The DIY community changed that. They built non one, but quadruple, 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 unhurried-driven and software-upgradeable, so when people feel that updates need to equal made, those updates keister be incorporate into your DIY devices very speedily (inside days OR weeks). The secondary is waiting tetrad years to arrive a unweathered pump through indemnity.
It's all been driven by fervid individuals, right?
Yes! The people who take in the DIY community thrive are volunteering their have time, outside of their Day jobs, to help make the lives of people with diabetes easier. Someone once joked to me that the client service at Loop is and then very much better than Medtronic. What they mean is that if you go to cardinal of the DIY Facebook pages (e.g., "Looped") and post a head, you will get immediate, valuable, caring feedback from the patient community. I'm far from advocating against regulatory bodies Oregon randomised 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 / Closed circuit (machine-controlled insulin delivery with personalized targets) is age ahead of the multi-million (one million million?) dollar diabetes device diligence. The DIY biotic community has made an of import bear upon on it manufacture. IT's amazing to realize what passionate patients and their loved ones can do – hence the motto #WeAreNotWaiting.
And you're an aspiring healthcare professional, correct?
I righteous started my first year of medical school at Rutgers Robert Woodwind President Andrew Johnson School of medicine in New Jersey. Of all time since I was about 13 years old, I let been impressive my friends and fellowship that I want to be an endocrinologist. I am fortunate to have an amazing endocrinologist to thank for being such an exalting function model. After school of medicine I plan to do a three-year residency training broadcast in pedology or general medicine followed by a fellowship in endocrinology.
What did you do before starting Med School?
I spent two years employed in character 1 diabetes objective research at Children's Hospital Los Angeles (which is where I was diagnosed, as mentioned earlier). I felt and 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 spell working at CHLA I was involved in many an different research studies that gave Pine Tree State a great unveiling 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 too coordinated for various studies through the T1D Exchange, one of which was a CGM intervention in youth and young adults with type 1 diabetes.
Anterior to leaving CHLA, I helped begin the regulatory process for various industry studies too. In conclusion, I am collaborating with the
Do you have any specific hopes for when you enter the white-collar clinician world?
One of the things I look forward to as a tense physician is to use my patient experience to comprise a voice for change in the medical profession. 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 habitually empowered by the diabetes online community on Instagram and Facebook. Social media has actually had a noteworthy impact on my mental health and relationship to diabetes during the last fewer years.
Have you been involved in some diabetes advocacy efforts?
My work at CHLA gave ME the opportunity to collaborate with TrialNet's UCSF chapter and some amazing JDRF Los Angeles faculty members to bring diabetes peril screening through and through TrialNet's Pathway to Bar study to neighborhoods throughout the Landlocked Empire in Southern CA – areas that CHLA had not previously been conducting TrialNet outreach events. This area did not presently have a JDRF chapter or any large TrialNet-affiliated search centers.
Teaming up with JDRF Los Angeles helped US strive many more families. We were able to offer TrialNet screening to these families without the need to travel far. Above wholly, I had a meaningful time getting to meet people, especially the new onset families, and discuss diabetes. Oftentimes information technology is the parents who are more in ask of plump for from other families who "drive it," and this meeting place was selfsame good for that.
What do you think represents the single biggest modify in diabetes care in recent years?
The impact that continuous glucose monitoring has had en route we talk about and manage diabetes. We stimulate such more data and reusable information at our fingertips than ever before. While the use of CGM has dramatically denaturized the patient experience, my prior research work taught Pine Tree State that industry is a few years behind in adopting CGM data as a primary endpoint for clinical trials. Although, this does seem to Be dynamic. I conceive it is critically important to evaluate clinical trials with primary endpoints measured by CGM prosody, so much as Time in Range and coefficient of variation, compared to just A1C surgery separate lineage glucose data. CGM information will tell us Sir Thomas More about the benefits of innovations than anything else out at that place.
How has your own CGM get been?
Personally, I started pumping a couple years after my diagnosing. While I absolutely wanted the heart, I could not envision wearing anything else on my body. I felt that it would be too hard to explain to my friends wherefore I had pieces of plastic around my abdomen and arms. I especially did not require the embarrassment of a CGM alarm loss forth in course of study.
After one semester of college, my endocrinologist finally convinced ME to take out 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 activenes. I not but matt-up safer, but as wel more engaged in my diabetes self-care. CGM triggered a cascade of events that got Pine Tree State interested altogether aspects of diabetes care and diabetes search. The breadth of information from CGM also gave me very much more comfort in adjusting my carb ratios on my own. I've get on so dependent thereon that information technology is hard to remember what it was like to manage diabetes before CGM.
What gets you excited equally to diabetes innovations?
I think we are living in a hugely exciting time for diabetes innovations. We now have an implantable glucose sensor and os nasale glucagon on the market. These are both addressing unmet needs of the diabetes community. Furthermore, we should soon possess multiple FDA approved machine-driven insulin delivery systems available to consumers.
Diabetes innovations are a beacon of hope for most of us living with diabetes. They give us other ways to make do a disease that is inherently difficult, and get diabetes so much many supportable. I'm a bit of a diabetes tech eccentric, so I am especially excited about the increasing interoperability between diabetes medical devices, smartphones, and smartwatches. On that point's and then practically to be excited about right now!
If you could speak with industry leaders, what would you suggest they could coif punter?
I receive a lot of thoughts on this. Patc I am so grateful for how I throw benefited from manufacture research and maturation, I know they can do improved when it comes to access to medications and diabetes tools. This past year there has been very much of necessary attention on the rising cost of insulin and the heartbreaking, hurtful effect this has had happening the patient residential district. It is clear that at that place has to atomic number 4 a paradigm shift in the means diabetes in treated. Right directly it is the "haves and the have nots" – those WHO can afford rapid performing insulin, CGM, and pump therapy, and those World Health Organization are unable to afford these tools. Information technology is consequently zero surprise that diabetes is the leading cause of indeed many ill health medical complications. But it does not have to be this way.
While media OR separate pressures may compel industry to found patient role discount rate or rebate programs, these are still unreliable and inconsistent ways to survive on life-saving tools and medicine. Deepen needs to come earlier, likely from the outset of drug or gimmick development when calculations are performed to approximation a academic Price dot. Given the function that industry plays in choosing which drugs to pursue, pricing drugs, etc., I believe diligence must play a bigger theatrical role in narrow this access spread. There moldiness atomic number 4 a better balance between industries' want for profit and patients' pauperization for entree.
Have you personally experienced some access or affordability issues paternal to diabetes?
I am fortunate to consume had trustworthy insurance coverage and access to diabetes supplies my hale life history. One of the frustrations I have faced is the limitations that insurance formularies place connected consumers' choices. It should not require endless insurance underwriter appeals (with uncertain results) to get reporting happening whichever pump, CGM, insulin analogue, test strip, or other provide that you have been exploitation or want to use.
This past year, I wanted to continue getting coverage for Contour Next test strips because the Contour Next Link beat syncs now to my insulin ticker. My underwriter only when had Extraordinary Touch try strips along their formulary. It took multiple entreaty letters to get the test strips I needed. These types of routine diabetes issues deter Pine Tree State from asking my doctor for a prescription for drugs like Afrezza operating room Fiasp because I receive an expectation of the succeeding hassle dealing with my indemnity provider. Needless to say, costs without coverage are prohibitive.
Last not least, wherefore did you decide to use for the DiabetesMine Patient Voices Contest?
Because I am passionate about diabetes innovations and I need to impart and learn from the leaders that survive happen. I've learned then much not only from my own 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 animation in a "golden era" for foundation. However, I still think we make only touched the tip of the iceberg for diabetes innovations. I am excited for what the future holds. I can't wait to fit others who take up a shared passion for diabetes and D-innovation. I'm specially looking forward to hearing perspectives from manufacture leaders. Sometimes it feels like the medtech industry could have made better design choices. Information technology is hard to tell if they made things a careful way based on patient feedback, clinician feedback, or Food and Drug Administration requirements. DiabetesMine University volition be a great chance to glean more brainwave into these important decisions. Hopefully I seat pay it send on with my longanimous perspective!
Thanks, Dan. We buttocks't time lag to meet you in November!
Source: https://www.healthline.com/diabetesmine/dan-bisno-diabetes-patient-voices
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