Please say hello to Mr. Brian Cohen, a fellow PWD (person with diabetes) who lives in the Washington D.C. area and has become a well-known name in the Diabetes Community over the past several years for his efforts as a patient advocate.
Brian has been living with type 2 diabetes for a decade now, and recently started his own blog called The Trials of Type 2 Diabetes where he talks about his journey with this illness, and explores new treatments and innovations. Brian has some great insight to share in this Q&A:
DM) First off Brian, what's your diagnosis story?
BC) I was diagnosed with type 2 in 2005. My father probably had it and probably his parents had it. I know my uncle had it and my brother has it. So it is in the family. I never was really overweight, but by the time I was diagnosed, I had clearly become glucose intolerant. After my diagnosis I went through the standard education, but it was only marginally helpful in my attaining good blood sugar control.
Over the next year, I discovered the Online Community and the effectiveness of low-carb diets. Over the years my diabetes seemed to progress as I went through a whole progression of medications. Eventually, more than four years ago, I moved to insulin and since then I’ve had great control.
What do you do professionally?
I have graduate degrees in engineering and computing topics, and for nearly 30 years I’ve worked for a non-profit near Washington, D.C., where I’ve done technical studies on electronics and computing for the government. The topics frequently change as one might imagine with these high-tech fields. When I first started, we didn’t have cell phones or the Internet. I got my first email in 1977 and first built a website in 1992, but things have obviously changed a lot. I no longer get my hands as dirty programming and building things. Instead I spend most of my efforts doing “research” -- reading studies, collecting information, doing analysis, writing and speaking. My technical background has spilled over into diabetes, where I do a lot of reading and posting.
How did you first find and get involved with the Diabetes Online Community (DOC)?
I’ve led a local face-to-face support group for years, but found it very hard to keep going. I joined DiabetesDaily and TuDiabetes in 2009 and today serve as the lead admin at TuDiabetes. And over time I also became more active with diabetes advocacy, attending meetings like the AADE (American Association of Diabetes Educators) conference in 2013, the Diabetes Advocates MasterLab in 2014, and being on a panel of diabetes patients appearing before the FDA. This year, I attended the ADA Scientific Sessions in Boston and also attended the Friends For Life/MasterLab in Orlando, and in August I'm planning to attend AADE in New Orleans. The culmination will be attending the DiabetesMine Innovation Summit in November!
What was it like attending the big ADA conference for the first time?
I came away both impressed by the scale and depth of the research enterprise but also a little disappointed. Looking over the “sea” of research posters, I came to the realization that I really had no hope of reading everything, let alone understanding and comprehending it. As a patient I do want to understand things so that I can make informed decisions. I really think there is good progress in medical devices that can help improve the outcomes and quality of life for those who use insulin. And there continue to be opportunities for things that might prevent or even cure T1.
But on the other side, the situation for T2 from a research standpoint was somewhat less promising. While there was incremental progress in understanding T2, there is little on the horizon that offers significantly better care or outcomes. Walking the exhibit floor I saw almost nothing that was new, hardly any new drugs, mostly combinations. And the insulin situation is not a pretty sight. And while one would think that there was just an overwhelming and compelling argument that nutrition science is a central element of T2 diabetes management, there literally nothing... on that topic. Why would a meeting like this that aims to educate clinicians on the latest science and evidence ignore nutrition science?
What did you see as the bright side of ADA?
I would say I was impressed with the increasing recognition and research on patient-centered care and the role of social support. There were a fair number of presentations and posters on these topics and many of the professionals I talked with recognized this new model of care and the role of social networks. I was very pleased with that general shift. And I have to tell you, after five full days and a huge amount of walking (I did 92,000 steps), I was tired.
You just recently started your own diabetes blog, right?
Yes... after resisting for years. Those forums I've been a part of are primarily topic-oriented discussions. And while I’ve written thousands of posts, those posts very quickly age and disappear. I really wanted a place where I could have focused topics that were of importance to me that would help others. I’m not the type to ruminate on my latest A1C, hypo or blood sugar reading. But I will write about the stigma and blame associated with T2 as well as topics like misdiagnosis. For instance, I have several posts on the topic of monogenic diabetes based on what I heard at the ADA Scientific Sessions and my personal experience navigating getting tested and the consequences.
Can you tell us more about your journey with monogenic diabetes?
Basically, monogenic diabetes is when there's a single gene mutation in someone with diabetes. There are different types of this, and one of those most commonly known is MODY (or maturity onset diabetes of the young). Some forms lead to hardly unnoticeable blood sugar changes, while other forms bring more serious blood sugar effects or even long-term complications.
My latest adventure in my diabetes journey is being tested for this. I’ve long known that I don’t fit the mold of a classic T2. I know that we are all different, but five years ago I began asking about getting testing. I was recently granted the test, but I don’t yet know the results.
We've talked quite a bit about your love for the kitchen and making your own food...
My wife and I always liked to cook. I think I got if from my mother who got involved with the early food movement in the 1960s when Julia Child published “Master the Art of French Cooking” and Joyce Chen wrote the “The Joyce Chen Cook Book.” She taught me basic skills and cultivated my interest. Over the years I’ve increased both. And through most of my life it was a good basic life skill, particularly in a home with two kids and two working parents.
Preparing good meals can be hard and time-consuming. But things changed after I was diagnosed. Nearly 10 years ago I adopted a low-carb diet and in the end it caused a fundamental change in my approach to food and the family dynamics of meals.
I decided that Food is Medicine. That what I chose to eat would have a dramatic effect on my health and blood sugar control, far more than any oral T2 medication. And that if I really believed that food is medicine, then I should be willing to spend more time and money on food just as I spend time and money on treatment. So I did. I took over shopping and food preparation. I buy better ingredients and spend more time on great meals. I am a big fan of cooking from scratch from whole foods and try to buy the best ingredients. And that shift also included less eating out and convenience foods, which actually saved us money. So today, it is not uncommon for me to have a filet mignon as my medicine for dinner. Heck, we even had wild boar a few months ago!
What do you think are the most exciting or impactful advancements in type 2 diabetes treatments and technology?
When I was first diagnosed there were only a handful of oral medications, primarily metformin, TZDs and sulfonylureas. Soon the DPP-4s and GLP-1s came to market. And most recently we have seen the development of the SGLT2s. I basically went through all the classes of medications and tried them in various combinations. With the exception of my experience with the SGLT2s, the effectiveness of these medications has been less than impressive. Someone who has T2 typically has a fundamental insulin resistance problem and none of these medications gets anywhere near “normalizing” a patient. Many T2 patients can likely get better results by simply adopting a low-carb diet.
I have been pleased with the SGLT2s, they have dropped my insulin dosing by 30-40%, improved my A1c and helped me drop a few pounds. But they are not magic. I think we have a long way to go.
And as to T2 technology and innovation, there has been little progress. T2s can piggy back on many of the T1 innovations such as pump and CGM technology, but are often denied access to these based on cost. Thus a better CGM is unlikely to benefit a T2 if it costs even more. There have been a few attempts such as the V-Go disposable pump and other kin, but they really are a poor cousin and struggle to outperform a good MDI (multiple daily injections) regime. In the end, cost is a huge driver for patients with T2, even moreso than T1. And we are still at the cusp of other innovations that might enable apps, data sharing and social networking to have real impact.
What do you think is missing as far as diabetes innovation, devices, and tech?
I think one of the biggest areas that are missing is helping patients with tracking their own big data and supporting self-experimentation. Collecting information on what we eat, what we do, how we treat and building personal models that help us optimize things towards our goals remains a challenge. Many T2 patients are given a meter and told to take readings, but not what to do with them. Eventually many patients learn to “eat to their meter.” But other than gross observations it is very hard to really use that information to confidently make improvements. And big data extends to things that help a patient identify and track decisions, which pills to take, appointments and all the other bizarre things related to dealing with the healthcare industry and insurance.
And I think there remains a huge gap in nutrition. The current nutrition advice is mired in political, philosophical and industrial influences. I don’t believe it is primarily focused on T2 patient health outcomes. Getting a process that can lead to independent and objective scientific evidence-based nutrition recommendations would be a real game-changer. That would truly be innovation.
I also think there is a need to have innovation which will “disrupt” the insulin market. There is a compelling need to have many, many insulin alternatives so that there is truly competition instead of monopolies.
Sounds like the issues of competition and cost are top of mind for you...
Yes, this is very important to T2 patients who are often denied access to treatments because of costs. We don’t need a new pump with fancier features; we need a pump that costs 1/10 of what it does today. And we need CGMs that are a lot cheaper. We need cheaper tests to properly diagnose diabetes. We should have inexpensive testing to identify T1 antibodies and MODY conditions and testing methods that can take place right in the doctor’s office.
Tell us a bit more about the life hack(s) you submitted as part of your entry in the Patient Voices Contest?
My hack was pretty low-tech. It is to use a rubber band as a memory device to avoid insulin dosing mistakes. Since I'm on MDI, I take a dose of basal insulin in the morning and at night. And over time because I almost subconsciously take my dose and am getting older I can sometimes forget whether I properly took my dose. This could lead to skipping a dose or, heaven forbid, a double dose. Here is my idea:
"You can use rubber bands as a backup to your memory to reduce or prevent insulin dosing errors. For instance, if you take a single basal dose in the morning, put a rubber band on your wrist at night (perhaps when you brush your teeth) and then the next day look at your wrist, only take your morning basal dose if you have the rubber band on, and then remove the rubber band and take your morning basal dose (you just avoided a double basal injection). Then most importantly, during the day you can always look at your wrist as a physical reminder of whether you took your dose or not instead of depending on your memory which at my age is really undependable (no rubber band means you took your basal)."
To adapt this to a split basal dose, you can swap the rubber band from the right to the left wrist. In practice I actually keep the rubber band on my pen. I swap the rubber band from the barrel of the pen to the cover.
What are you looking forward to at the DiabetesMine Innovation Summit?
I am really excited about providing the T2 voice. Of the nearly 30 million Americans with diabetes, only 1.25 million have T1 (JDRF figures). T2 patients by numbers are huge. This is a vitally important population. Even when we look at something that we think is a T1 issue such as insulin, it is really not so clear. According to the CDC, there are about 6 million Americans on insulin therapy, so obviously more T2s than T1s. Thus the issues of insulin, pump and CGM technology are just as much of an interest to T2s -- although for a variety of reasons the T2 voice hasn’t been heard. It is time for T2s to stop being the “silent majority.”
Thanks, Brian. We appreciate your knowledge and perspective, and are very much looking forward to seeing you in November!