The diaTribe advisory board on what every person with diabetes must know

diaTribe dialogue
December 31, 2012

by Adam Brown and Kelly Close

Our 46-person diaTribe advisory board has nearly 1,000 years of collective experience managing diabetes. Seriously. If you want to know who’s in the trenches – or the clinics – setting standards of care for people with diabetes; who’s in the labs doing the research that is creating breakthroughs for the entire field; who’s running the organizations that are raising money, funding trials, and putting diabetes at the fore of our public health care system; or who is in the classrooms teaching and training the next generation of health care providers for diabetes; the answer is, our board members. So when we started brainstorming about who to talk to in the diaTribe dialogue for our 50th issue, the choice seemed easy – all of them! We asked our entire advisory board to answer the following four questions:

1. If you could give people with diabetes just one piece of advice, what would it be?

2. If you had only 30 seconds to tell a patient the absolute MOST important things he or she needs to know, what would you say?

3. What has been the biggest advance in diabetes care since diaTribe was founded in 2006?

4. What do you expect will be the biggest advance in diabetes care in the next five years?

The answers that came back were downright fascinating and inspiring. Below, you will find the responses to questions one and two, grouped by theme: The Right Mindset and a Balanced Approach; Diabetes Management and Glucose Control Strategies; Healthy Eating and Exercise; Support from Friends, Family, and your Healthcare Team; Glucose Monitoring; Self-care; Starting Early; and Knowledge and Research. (You can click on each of these to skip down to that particular section of this page).

The themes are also ordered by frequency, and we found it quite telling that there seemed to be roughly equal focus on the psychological, behavioral side of diabetes (e.g., one’s attitude towards diabetes, habits, mood, etc.) and the practical, day-to-day management side (e.g., when to test blood one’s glucose, how to adjust insulin, what to eat, etc.). Indeed, this greater focus on the behavioral side of diabetes is something we’ve noticed since diaTribe was founded, and one we are certain needs to continue in the coming years. It’s also an area that we hope gets greater attention and funding.

When we asked diaTribe advisory board members about the recent past and near future of diabetes care, one clear area of emphasis was on diabetes technology. For question three (the biggest recent advance in diabetes care), CGM was unquestionably the dominant response, even from board members who traditionally focus more on type 2 patients than type 1 – it was mentioned by well over half of our respondents. Incretins, particularly GLP-1 agonists (e.g., Bydureon, Victoza, Byetta), was another frequent answer (nearly 20% of respondents, and they aren’t even approved for type 1 patients, the focus of some of our board). Looking forward to the most important advance in the next five years, remarkably, more than half of advisory board members mentioned the artificial pancreas, followed by better CGM (22%), and better insulin pumps (11%). At the bottom of this page, we have created two graphs to summarize these takeaways. We hope you enjoy these insights as much as we did.

The Right Mindset and a Balanced Approach

“Living with type 1 diabetes is an ultra marathon, not a sprint, and success comes from the run, not the place in which you finish. Remain in the game and don't let the minor variations in the path distract you from the goal: simply finishing the race.” Jeff Hitchcock, Founder, Children with Diabetes

“Look in the mirror and tell yourself this: Diabetes is NOT your fault. You didn't do anything wrong and it is not a character flaw. But it is your responsibility and you need to get the best team you can find to help you with expert advice and support.” Virginia Valentine, Clinical Nurse Specialist, Albuquerque, New Mexico

“Being successful with diabetes is like anything else: take a middle ground. Ignoring it is a recipe for disaster, but having it take over your life can be even worse. Don't get frustrated over individual blood glucose levels or even A1c levels you don't like. Just try to do the best you can. In the end, you will more likely than not be very successful.” Dr. Irl Hirsch, University of Washington, Seattle, WA

“Living with diabetes can and should provide you with the opportunity to celebrate a full, active, and wonderful life. While the demands for living with diabetes include the need for attention to detail—from medication to activity to food—and accounting for the unexpected, the tools and resources available for you to care for your diabetes in the midst of a busy, productive and fulfilling life are better today than at any time in the modern history of diabetes care.” Dr. David Kendall, Eli Lilly, Indianapolis, IN

“Embrace diabetes, make it part of your life, become more insightful and stronger for having it, and do not let it prevent you from doing anything in life.” Dr. Steven Edelman, University of California San Diego and Taking Control of Your Diabetes, San Diego, CA

“Focus on the positive. With reasonable care, your chances of living a normal life expectancy without increased risk of disability is excellent.” Dr. John Buse, University of North Carolina, Chapel Hill, NC

“Do not lose control – always focus on the long term.” Dr. Karin Hehenberger, Coronado Biosciences, New York, NY

“Never ever let your diabetes get in the way of achieving your dreams. It can even be a positive force in your life, encouraging you to focus your energies and take care of yourself – diabetes can make you stronger. And please don't be too hard on yourself; you'll have good days and bad days, just like everyone!” Jeff Halpern, Abbott Diabetes Care, Alameda, CA

“Value yourself. You have a lot to contribute to family, friends, and your community at home and work; therefore, take care of yourself.” Dr. Bruce Buckingham, Stanford University, Stanford, CA

“You can do anything your friends without diabetes can do, and more!” Dr. Aaron Kowalski, JDRF, New York, NY

“Each day will bring new challenges and new learnings; like a marathon, you must take it one step at a time and remember that no one expects perfection.” Jen Block, Certified Diabetes Educator, Stanford University, Stanford CA

“Don't let your diabetes define you.” Gloria Yee, CPMC, San Francisco, CA

“Don't hide your diabetes, don't let anyone judge your diabetes, and do the best you can by learning all you need to know and staying committed to doing your best. When you slip, forgive yourself and go on.” Dr. Francine Kaufman, Medtronic Diabetes Care, Northridge, CA

“When your glucoses are in target, take credit. When your glucoses are out of range, blame the diabetes and vow to make better choices tomorrow.” Dr. Howard Wolpert, Joslin Diabetes Center, Boston, MA

“You must become the master of ‘starting over.’ We will never get everything right every time, maybe not even one out of 10 times, so you have to be able to start over. It's okay to start over and try, try, and try again. You may have to take a deep breath and start over on your diet, exercise plan, checking blood glucose, taking medication, etc. But it's okay – none of us is perfect. Start over, take a breath, take the first step to get back on track, and just keep going forward.” Virginia Valentine, Clinical Nurse Specialist, Albuquerque, New Mexico

“You can live a close-to-normal life with diabetes if you take over the responsibility for your disease. Participation, good teaching, and treatment are key to understanding how you can manage your diabetes. Modern diagnostic and therapeutic options will allow you to live a flexible lifestyle when it comes to meals, exercise, and traveling.” Dr. Lutz Heinemann, Profil Institute for Clinical Health, Neuss, Germany

Diabetes Management and Glucose Control Strategies

“Living a full life is possible if you adjust your treatment to your lifestyle.” Dr. Paul Zimmet, Baker IDI Heart and Diabetes Institute, Melbourne, Australia

“While diabetes is a serious disease that can be quite harmful to one's health, what is most critical for everyone to know is that you can live a long and healthy life with diabetes. While poorly managed diabetes is the leading cause of most of the scary long-term complications, well-managed diabetes is the leading cause of...nothing!” Dr. William H. Polonsky, PhD, CDE, Behavioral Diabetes Institute, San Diego, CA

“It now seems clear that huge advances in diabetes technology – in the form of automatic glucose control systems – will be here within the next five years. In the meantime, you should use a CGM as much as possible.” Dr. Edward Damiano, Boston University, Boston, MA

“You must become the researcher of your own ‘one rat study.’ You have a glucose meter – check out how foods are working and learn how to optimize your medication. Don't forget to get good advice on how to set up your research trial and then learn all you can about what works best for you. Never give up on yourself!” Virginia Valentine

“Set goals for your diabetes self-management that are realistic and attainable given all of the other competing demands in your life. Perfectionism in diabetes self-management is a recipe for frustration, demotivation, and disengagement.” Dr. Howard Wolpert

“Avoid hypoglycemia. Now that we generally have the classical diabetes complications under our thumb, hypoglycemia is the emerging leading cause of premature death and disability in people with diabetes, at least those with good access to care.” Dr. John Buse

“Fix your basal first.” Dr. Howard Zisser, Sansum Diabetes Research Center, Santa Barbara, CA

“Keep your blood glucose levels as near normal as possible.” Dr. Lois Jovanovic, Sansum Diabetes Research Center, Santa Barbara, CA

“Good control will pay off.” Davida Kruger, Henry Ford Health System, Detroit, MI

“Improve your glucose control.” Dr. Satish Garg, Barbara Davis Center for Childhood Diabetes, Denver, CO

“Try it, test it, change it, repeat as needed.” Jen Block

Healthy Eating and Exercise

“As a holiday gift to yourself and your family, think about one action, one goal you are willing and able to set now. Then, do it in 2013!” Hope Warshaw, MMSc, RD, CDE, Hope Warshaw Associates, Alexandria, VA

“Stay well to enable you to one day be eligible for the cure!” Dr. Lois Jovanovic

“Exercise for about an hour every day.” Dr. Zachary Bloomgarden, Private Practice, New York, NY

“All of the standard healthy living recommendations still apply and may even be more important for people with diabetes. This means exercising regularly, eating well, not smoking, and keeping your A1c, blood pressure, and cholesterol at goal.” Dr. Mark Yarchoan, Resident, Internal Medicine, University of Pennsylvania

“Pay attention to what you eat. Have an activity plan. Know your glucose.” Dr. Jay Skyler, University of Miami Medical School, Miami, FL

“If you look after yourself, you should have a normal and fulfilling life.” Dr. Philip Home, Newcastle University, Newcastle, England

“Understand the relationship between lifestyle activities (primarily food and exercise) and your medication.” Dr. Bernard Zinman, Mount Sinai Hospital, Toronto, Canada

“Stay active.” Dr. Karin Hehenberger

“Losing 5-7% of your excess weight and being physically active makes an impact, especially early on in disease progression.” Hope Warshaw, MMSc, RD, CDE

“Keep active, know your A1c, and be your own advocate.” Dr. Michael Dougan, Massachusetts General Hospital, Boston, MA

“Don't forget lifestyle modifications are effective for both type 1 and 2 diabetes.” Dr. Satish Garg

“I would emphasize the importance of movement and exercise in helping manage one’s diabetes.” Dr. Aaron Kowalski

Support from Friends, Family, and your Healthcare Team

“If at all possible, don't do diabetes alone. Managing diabetes day after day is so much easier when you have people in your life who are rooting for you. So think about what you need and who you could ask. Reach out to a good friend, a family member, a neighbor, a coworker, or even someone you meet through social media. It can be anybody!” Dr. William H. Polonsky

“Put a great team together: your support system of friends, loved ones, colleagues, and your health care providers. Having someone to help and support you with your diabetes helps ease the journey.” Dr. Francine Kaufman

“Take your diabetes seriously, find a health care team that really understands diabetes, and use all available technology.” Davida Kruger

“Surround yourself with great people who accept you for who you are and find a supportive, understanding healthcare team that will be there when you need them for the big things and the everyday questions.” Jeff Halpern

“You need to have an ongoing relationship with a physician skilled in managing diabetes and also with a diabetes educator.” Dr. Ken Ward, Oregon Health and Science University, Portland, OR

“Keep pushing your healthcare providers.” Dr. Karin Hehenberger

“Call, email, and text your provider if you have a week’s worth of problem blood sugars – they can help you problem solve.” Debbie Hinnen APRN, CDE, Mid America Diabetes Associates, Wichita, KS

Glucose Monitoring

“Not knowing your blood sugar is like crossing a highway with your eyes closed.” Dr. Jane Seley, New York Presbyterian/Weill Cornell, New York, NY

“Real time knowledge of your glucose is the best teacher.” Dr. Nancy Bohannon

“Know your blood sugar! Information is powerful. Even if you don't like it, you can always fix it!” Dr. Irl Hirsch

“Continuous glucose monitoring can be tremendously useful, improving blood glucose control while saving work. However, to get those benefits you have to pick the right CGM and get through an initial period of increased work to learn its quirks, figure out how to get high quality calibrations, keep the sensors on your skin, and modify habits based on intermittent blood glucose monitoring.” Dr. Steven Russell, MGH Diabetes Associates, Boston, MA

“I remain convinced that looking closely at your glucose patterns and responding to them in a logical way  remains the most important thing you can do to remain healthy, happy and safe regarding your diabetes management.” Dr. Richard Bergenstal, International Diabetes Center at Park Nicollet, Greater Minneapolis-St. Paul Area, MN-WI

“Checking your blood sugar often is key to managing your diabetes. It allows you to evaluate your meals, medication, and physical activity on an ongoing basis.” Dr. Jane Seley

“Always know what your blood sugar is.” Dr. Ken Ward

Self-care

“You have the main responsibility for your diabetes. You are your own best advocate – be smart and be persistent.” Dr. Steven Edelman

“Good self-care is the key to successful diabetes management, since diabetes management is for the most part self-management. As health professionals, we will give you the best tools and the best lifestyle advice, and spend whatever time it takes to help you use them. However, you live with the condition 365 days a year, and we interact with you for only a fraction of that.” Dr. Philip Home

“Learn how to take care of yourself – you will be your own best caregiver.” Jeff Halpern

“Become very engaged in your own diabetes care and management sooner rather than later. You should be as independent as you are comfortable being. Adjusting not just your own insulin, but if you are on oral agents, the concepts are the same.” Debbie Hinnen APRN, CDE

Starting Early

“Research shows prediabetes and type 2 diabetes are progressive – they mostly require more blood glucose lowering medications over time. Though it is very easy to deny this disease and avoid taking action, more research keeps pointing us to the benefits of early, aggressive management. Don't avoid or put off taking medications. Today's newer medications can slow the progression.” Hope Warshaw, MMSc, RD, CDE

“Learn early to think like a pancreas.” Dr. Barry Ginsberg

“Hit it hard (good control) right up front while your pancreas is still helping out. It pays off big in the long run.” Debbie Hinnen APRN, CDE

Knowledge and Research

“Never stop learning.” Gloria Yee

“Education, education, education.” Dr. Howard Zisser

“Do your research and then ask your provider about the new treatments and technology. Then, make your case why you think they might work for you. If you don't have insurance, most of the pharmaceutical companies have very generous patient assistance programs – some now up to 400% of the federal poverty level. They are beginning to work with Medicare patients in the donut hole. Check out Needymeds.com for forms for the newer (non-generic) medications. Start filling them out, so your provider won't have so much work to do to help you get what you need.” Debbie Hinnen APRN, CDE

*Note: responses mentioned less than 5% of the time were not included.

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