Impacting Diabetes Care at the Community Level: Making the Connection Between Patient and Provider

I would like to first thank the American Diabetes Association (ADA) for bestowing this award on me and for all of their efforts in education during the past 69 years. I would also like to acknowledge every person who is an educator in any way, whether your efforts are focused on people with diabetes and their families, young professionals in training, your peers, or the general public, because this award is for all of you as well. I hope that you feel the same gratification in celebrating this award and the important role of education in diabetes care as I do.

I would like to thank my wife, Ingrid, and our two daughters, Talia and Carina, for their never-ending support of my efforts in education. My accomplishments did not come without many sacrifices in terms of time away from home during so many family events, such as soccer games and birthday parties, not to mention my ever-delinquent “honey do” list. Thank you, Ingrid, so much for being there when I was not and giving up a fulltime academic career in podiatry in order to allow me to develop and grow professionally.

I developed diabetes when I was 15 years old. I lost 20 lb and had the classic symptoms of excessive thirst and urination. I remember being yelled at by the other kids at the drinking fountain because I took so long. My teachers reprimanded me for falling asleep during class, as I could barely keep my eyes open. When I think back on those days, my experiences highlight the importance of educating the public about diabetes and wiping out ignorance and intolerance.

I ended up in the intensive care unit, and I clearly remember that all of the nurses kept telling me repeatedly, “You could live a normal life.” I had no clue what they were talking about; however, because of the way they kept saying it, I was beginning to get a little worried.

I also remember attending a diabetes class that first week while in the hospital. There I was, a young, naïve, and ignorant teenager with newly diagnosed type 1 diabetes sitting in a room with 25 older, overweight people with type 2 diabetes. The single fact that I remember from that class in 1970 was that ketchup has a lot of sugar in it. Even at that time, my instincts told me that this was not the best learning environment for someone like me, and there had to be a better way.

I was eventually discharged home on one shot per day in the morning (NPH and regular) and given a strict diet using the old Exchange system, where I would weigh all of my food. What a pain!

I was also supposed to test my urine for glucose four times per day and keep records of everything. At first, with the help of my family and especially my mother, Joyce, I did everything by the book. But eventually I started to lose interest.

I would see my doctor every 3 months, have my blood and urine collected early in the morning, and then wait the usual 2–3 hours for the results to come back from the lab. Note: glucose meters and the A1C test were not yet available. My doctor would come into the room, look at the results, and say the same thing every time, “Steve, you are doing fine. I will see you next time.” Every visit to my doctor was exactly the same.

I was never told what my goals of control should be and why it was so important in a way that I actually understood. As a result, my control started to slip.

I worked at a boys' camp in Los Angeles every summer as a cook and counselor. Every week, we had a contest called, for lack of a better term, “The Pissing Contest.” The competition was to see who could urinate for the longest period of time. We took this event very seriously and used a stopwatch that measured to 1/100^th of a second. Well, I remember winning week after week after week, and I still hold the camp record to this day.

The not-so-funny thing about this story is that my diabetes was horribly out of control. I only wish I could have had access to a diabetes educator like Diane Pearson, Geri Spollett, Gayle Lorenzi, or Viola Genadio. Certified diabetes educators have an incredibly important profession that has thankfully grown since the time of my diagnosis.

It took me several years before I realized that I should do something about the fact that I probably was not doing well. On one occasion, I decided to test my doctor because what he was saying to me at every visit just did not make sense.

On the morning of my next appointment, I went to Winchell's Donut Shop and ate five donuts. I then proceeded to give my usual urine and blood samples at the office. I remember testing my own urine in the hospital bathroom, and the strip turned black in about 3 seconds. I waited the usual 2–3 hours, and finally my doctor walked into the examination room holding his clipboard, studying the test results. He then looked at me straight in the eye and said, “Steve, you're doing fine. I will see you next time.”

From that point onward, I knew I could not trust him to take care of me, and I made the decision never to see him again. The bad news is that during those early years of poor control, I developed several complications.

As an undergraduate at the University of California–Los Angeles, I instinctively sought out excellent diabetes care. I am indebted to Mayer Davidson and Richard Berkson, not only for their help in my career development, but also for their early efforts to educate me on how to take control of my diabetes. That education has prevented these complications from reaching end-stage levels and has allowed me to have an excellent quality of life (despite a few bumps in the road along the way).

I went to medical school at the University of California–Davis, and during my first-year physiology course in 1978, I will never forget how I felt after the professor stated that, “50% of all diabetics die from diabetic kidney disease within 20 years after the diagnosis.” I was 23 years old with 8 years of diabetes behind me. “Only 12 years left,” I thought. My best friend, Ken Facter, always tried to comfort me by saying that at least I knew what I was going to die of.

These early experiences motivated me to take better care of myself and to devote my career to helping people with diabetes. Ironically and tragically, Ken died suddenly of a heart attack at the age of 40. His death was a painful wake up call to me that we must live every day to the fullest and not take 1 second of life for granted.

After completing my medical residency, I went to the Joslin Clinic in Boston, Mass., for the first part of my diabetes training. There, I developed lifelong friendships with my co-fellows Dave Price, Reddy Biggs, James Meachum, and Avi Karasic, all of whom have made an impressive mark on diabetes research and care. And of course, Gordon Weir was such a great director.

At the Joslin Clinic, I met my wife, Ingrid, as she was doing her residency in podiatry. I also had the opportunity to learn from individuals such as Ron Kahn and George Eisenbarth, both dedicated researchers and educators.

Ingrid and I eventually ended up at the University of California–San Diego and the Veteran Affairs Medical Center there. There, we met two of my mentors and very close friends, Alain Baron and Bob Henry. These are two incredible role models who have selflessly supported the development of so many young people needing guidance in their career. Over the past 22 years, Ingrid and I have both had the honor and privilege of serving our country's veterans living with diabetes. This is such a special population of real heroes.

Brigadier General Robert Cardenas, who is 87 years old, has type 2 diabetes plus many other heath issues. I gently insist that the residents and fellows take a military history on their patients so they can get a feeling for what these veterans went through to defend our country and to create a bond that will help to open bidirectional communication and eventual understanding of what important barriers may be limiting their diabetes control.

If they did not ask, they would never know that Robert Cardenas served in World War II, Vietnam, and Korea; helped to break the sound barrier with Chuck Yeager; and flew Air Force One.

Getting our patients to put diabetes high on their priority list is such a key component for long-term success and depends so much on individualizing our communication styles.

As a young faculty member, I spent a lot of time and energy after the results of the Diabetes Control and Complications Trial were released in 1993 trying to educate health care providers about how to take better care of their patients with diabetes. However, it was slow going, and diabetes care was not improving fast enough at the community level. I realized that there were many barriers at that time limiting successful diabetes management. Here are a few:

• Managed care was beginning to hamper proper medical care in a major way.

• As a caregiver, I was fairly helpless in trying to fight the system.

• There was very little education directed to people with diabetes.

• It took too long for information to filter down from the major research institutions to the specialists and then to the health care providers, who, in turn, had to change their practice habits before their patients could be the recipients of a proven treatment strategy or a new device or medication.

For these reasons, I started to take the most important messages directly to those who were most affected by this condition. In 1995, I had the idea of putting on a large conference at the San Diego convention center for 1,000 people with diabetes. I called it Taking Control of Your Diabetes (TCOYD) and focused on education, motivation, and self-advocacy. I realized early on that this approach could make a significant impact on diabetes care in this country and that it was a large piece of the diabetes-care puzzle that was missing.

Since the beginning of TCOYD in 1995, we have been pushing these three important themes, and they have never lost their importance or magnitude:

• You have the main responsibility for taking control of your diabetes.

• You are your own best advocate.

• Be smart and be persistent.

Simply stating these themes is one thing, but getting folks to take ownership of their health is another. That was the challenge.

At that very first conference, I realized how thirsty people with diabetes were for information about their condition and how much more needed to be accomplished. TCOYD became a not-for-profit organization and has steadily grown, while maintaining a high level of quality and offering impactful programs across the United States. As our mission statement summarizes, “Guided by the belief that every person with diabetes has the right to live a healthy, happy, and productive life, TCOYD educates and motivates people with diabetes to take a more active role in their condition.”

Let me take you through a day at a TCOYD conference. The morning starts with a general session that includes topics of interest to anyone with any type of diabetes, including all of the folks in the crowd without diabetes who are there to support their loved ones. We call them the “type 3s.”

My opening presentation, which sets the stage for the day, is a general overview of the important aspects of diabetes that emphasizes motivation and is infused with humor. I feel that these are key components to information retention and contribute to our overall success in making positive changes in people's lives.

Throughout the day, we deliver strong, clear messages about how to live a healthy life with diabetes with well-defined and attainable goals. Home glucose monitoring is just one example.

I end my presentation with a poem for people with diabetes:

We purposefully have a follow-up presentation on the emotional barriers of diabetes, which opens participants' minds to absorbing information for the rest of the day by acknowledging and addressing the commonality and normality of feeling guilty, fearful, anxious, frustrated, and depressed about their own diabetes or about the diabetes of someone they care for.

We have been fortunate to have worked with a group of talented “touchy-feely” guys and gals, as I call them, to deliver this important message early in the day. Bill Polonsky, Dave Marrero, Joe Nelson, Susan Guzman, and Richard Rubin are just a few of our superstars.

The other morning general session lectures are designed to educate and entertain all of the participants and make them realize that they can take control of their diabetes.

The lunch program is also an important part of the day at TCOYD. We have a motivational speaker who has been living well with diabetes and has an important and uplifting message to tell. We have hosted people such as Native American Olympic athlete Billy Mills, actress Della Reese, Atlanta Hawks basketball star Dominique Wilkins, Vietnam veteran Urban Miyares, and former Miss America Nicole Johnson, just to name a few.

The participants eat, laugh, and listen to the speakers, who help them realize that diabetes crosses all socioeconomic and ethnic boundaries and that they finally are in a place where they are in the majority and not the minority.

The afternoon at TCOYD is designed to address the individual needs of the participants. There are a variety of workshops focusing on topics such as insulin pumps, continuous glucose monitoring systems, neuropathy, heart disease, women's issues, carbohydrate counting, obesity, and dispelling the myths of insulin therapy.

We have also come to realize that the “type 3s” play such a crucial role in the ultimate success of people with diabetes, and they must be educated as well. The type 3 workshops are moderated by one of our clinical psychologists and are wildly successful in fulfilling another unmet need in diabetes care.

We have hands-on sessions to allow one-on-one consultations with dietitians, pharmacists, eye specialists, podiatrists, dentists, endocrinologists, and certified diabetes educators. We also have exercise sessions, in which people actually get moving with tai chi, Zumba dancing, resistance exercises, or walking with a pedometer. Bill King, a real motivator, has taught us that a sit-down lecture on exercise after lunch just does not do it.

The exhibit hall is also an important and popular part of the day. It is here that people learn more about the devices, medications, and products that are available to people with diabetes. It is also a place where other not-for-profit organizations such as ADA, the Juvenile Diabetes Research Foundation, Trial Net, the National Diabetes Education Program, and the National Institutes of Health can spread the word regarding their support programs and research opportunities. We strive to bring not only people with diabetes, but also the medical community, together at these conferences.

The day ends with all of the participants coming back together in a general session. We hear final words of wisdom from the faculty and allow participants to ask questions or share their feelings and emotions. We try to leave them with hope, motivation, and guidance to help them make realistic commitments to their health that day. It is a long but gratifying 8-hour day for everyone involved.

We also recognize the need to address special populations that have been hit hard by diabetes and have, therefore, organized conferences with special emphasis and focus on Native American Indians, African Americans, Latinos, Pacific Islanders, and other groups.

The co-directors and faculty of our TCOYD conferences are all impressive diabetes leaders with a strong commitment to patient education. John Buse, Anne Peters, Rich Bergenstal, Francine Kaufman, Ian Blummer, Lori Tom, Irl Hirsch, Vivian Fonseca, Lois Jovanovic, Jim Gavin, David Kendall, Virginia Valentine, Larry Blonde, Ralph Defronzo, and Jay Skyler are just a few people in this talented and amazing group who have helped us through the years.

At the end of the day, participants are so motivated that they are happy they have diabetes! We try to give participants a way to maintain their motivation by offering a quarterly newsletter, educational television series, a TCOYD book, and access to our Web site. We also strongly encourage them to join their local diabetes organizations and support groups.

We are aware that we have helped scores of people living with diabetes. However, formally studying outcome measures and behavior issues is an important aspect of TCOYD. We have conducted and published the results of numerous studies looking at topics that range from resistance to insulin therapy and home glucose monitoring to the use of herbal remedies in diabetes care. We have also conducted studies showing that by attending a TCOYD conference, participants can significantly lower their A1C 3–6 months later (mean decrease of 0.8%), in part because of documented positive behavioral and self-care changes. After attending a TCOYD conference, 80% reported that they spoke to their physician about improving their diabetes care.

Several years ago, I realized that there was another piece of the diabetes care puzzle that was missing. It was related to the communication and understanding between health care providers and people with diabetes.

A huge challenge is to improve the attitudes of providers toward their patients struggling with diabetes and to create an empathetic atmosphere in which there is open communication and no inappropriate labeling of patients as “noncompliant.” I have never met a patient who did not want to live a long and healthy life.

Our unique Making the Connection initiative puts a doctors' learning environment smack in the middle of a TCOYD patient conference. For part of the day, providers are in their own room receiving several cutting-edge continuing medical education lectures from experts in the field. They also join the participants with diabetes during part of the morning general session and for the lunchtime program.

During the afternoon, professionals join a large group of patients to attend a workshop that is led by one of our “touchy feely” folks. This is always interactive and enlightening for both the people with diabetes and the care providers because they have an opportunity to express both sides of the doctor-patient relationship and come to an understanding about the frustrations faced by both groups.

At the end of the day, the professionals have a better understanding of what it is like to live with diabetes on a day-to-day basis. In turn, the people with diabetes realize that our health care system is in need of repair and that the providers are under lots of different pressures. Most of all, the people with diabetes learn that their health care providers are on their side.

I believe that teaching institutions should educate professionals and patients together on a parallel track and encourage a bidirectional exchange of information between the health care providers and the people with diabetes. The key message here for people with diabetes is to help your care provider take better care of you.

None of our programs would be possible without the support of our donors, government and foundation awards, unrestricted educational grants, and charitable donations from the medical device and pharmaceutical industry. Their support of diabetes education is commendable and appreciated by the people we serve.

I want to acknowledge our organization's board of directors, medical advisory board, and the hard-working other dedicated individuals at TCOYD who produce, organize, and successfully implement all of our programs. In 1995, Sandy Bourdette was there to organize the very first conference and has been with the organization ever since, working tirelessly to continually produce the high-quality programs that have truly made TCOYD what it is today.

I also want to once again thank my family for their never-ending support that makes everything I have accomplished possible.