This is a letter I sent to the president of my insulin pump company on October 31, 2008.
This letter has three purposes. First, I would like to express my appreciation for the product and services you deliver. The impact that the Animas Insulin Pump has made in my life has been profound. I was actively seeking a change after many years of trying and just not getting where I wanted to be. In the end, the pump is a tool. The Animas Pump and the service that your company delivers have been critical components in the system that I have created, continue to develop and work with in achieving balance with blood sugars and with my life.
The second purpose of this letter is to outline the current system I use in dealing with Type 1 Diabetes. The past three years I have been able to make diabetes my main focus. The 7 years prior to going on the pump I had been working hard at things. I was exercising, eating better, changed from Humulin N to Lantus but was still dealing with unacceptable swings. I guess the best measure for success in this game of balancing blood sugars is the A1C result. I was moving from the 8’s and 9’s to the mid 7’s to 8’s. I was also working hard at my job, often times being at the office for 14 hours in a day. Three years ago I got to a place financially where I could let everything go and place intense focus on my diabetes. I increased my work outs, focused more on food, documented and wrote about my experiences. I also went through an extensive yoga (I am certified to teach) and meditation training. I was practicing yoga prior to this and was using it as a metaphor for the skill of balancing as well as keeping my body in shape. Bottom line , my A1C results have been under 7.0 for three years. I explain the transformation like this…, “Prior to the pump balancing my blood sugar was like walking on a high wire, after the pump it is like performing a balance beam routine. The surface is wider and the falls are less severe.” Combined with the more desirable results in blood sugar control I have realized more balance, serenity and happiness in my life.
The third purpose of this letter is to pass a few ideas by you. In my attempt to reach out to help others combined with my own experience of living with the disease, I have been given a fleeting and frustrating view of the void that exists between what is possible and what is being achieved. I believe that your company might be positioned to fill some of that void. I want to share what I have to say. The Animas Insulin Pump is one of the strongest, stable and stealthiest weapons in the arsenal of weapons I have as I relate to, negotiate with and sometimes battle Type 1 Diabetes. Thank you, your current team, past employees and original founders of Animas Corporation.
My career path has placed me in the role of establishing systems and procedures, developing the corresponding training protocols and sometimes facilitating training. It has paralleled the challenge presented by having to live with Type 1 diabetes. Balancing blood sugars as a Type 1 requires systems and procedures and proper training. In the past three years I have come to some deep awarenesses of the path I took and what I ultimately had to do to achieve the results I was looking for.
Part of the system I have developed for personal use and continue to enhance is contained in your training manual, DVD and initial pump training. I had put some of the other components of my system in place prior to going on the pump and some after. I continually learn more and change and enhance things. When I got on the pump I “took off”, I saw immediate results. I was able to “glide” in normal blood sugar range for hours at a time. I soon extended this to a whole day and when I really focus can do it for 2 or 3 days at a time. As a trainer I have learned how to use metaphors in “selling” what I am training. Blood sugar stabilization is a balancing act that must be performed 24/7. I have already used the high wire and balance beam analogy. That is what I feel like when I am getting A1C’s in the 7’s, 8’s or 9’s. When I start to master the balancing act it feels more like flying a plane. The Continuous Glucose Monitor currently represents the most comprehensive meter on the instrument panel that provides “altitude” levels . I test tried the first Dexcom and really enjoyed using it. I became a little obsessive/compulsive with it. The reasons I don’t use it now are 1.) It was unreliable. I work out a lot and it does not work properly when the site gets warm. And it is sometimes hard to keep the receiver within 5 feet. 2.) Issue with the port. For me a second port is a problem. I have a hard enough time dealing with the healing of my ex infusion sites. 3.) Too much to carry around. This has been or is being solutioned. In place of the CGM, I test (check) my blood sugar a minimum of 10 times per day and sometimes up to 15. I look forward to when the addition of another site is not as intrusive and the reliability percentage goes up. I know that you are working on it.
Buckminster Fuller said in his book Critical Path, “Total accountability and total feedback constitute the minimum and only perpetual motion system.” The system that we, as Type 1 diabetics, are tasked to confront, understand, integrate and master is a manual replica of a system in the body that was destroyed and, when healthy, is in perpetual motion. It has several parts, ingredients and functions that must be accounted for. The feedback component of the system is blood sugar. And blood sugar does not stay static, as you know. It is either either trending up or down as different forces work to elevate or decrease it. The pilot of the plane is contending with these forces while checking the instrument panel. In my opinion, unless you are checking a minimum of 10 Times per day you do not have adequate feedback and you should be working on the high wire act or a balance beam routine and get out of the cockpit. Total feedback would be a CGM that provides valid, reliable and real time readings. The void in the current system being used to educate (train) Type 1 diabetics exists on both the accountability side of the system as well as the feedback side.
The delivery of insulin is one part (function) of the system that must be accounted for. I believe that one of the reasons that the current paradigm being used is lacking so much is that it is built with too much emphasis on the, so called, “Western” way of medicine. I am not using this term so that I can introduce “Eastern” forms of medicine even though I do use some of those modalities. I believe that too much emphasis is put on the concept that insulin is the “medicine” that will “cure” the ills of the disease. We all know that insulin is not medicine. It is a hormone. But it is seen as medicine in the current way Type 1 diabetics are being treated and educated. Seeing insulin as medicine is also an easy way to avoid responsibility. The reality is that insulin is not medicine and should not be seen as medicine in a system that seeks A1C’s below 7.0. It is more like an accelerator in a car or plane. More insulin more acceleration of the process. Less insulin then less acceleration. The food we eat is the fuel. Seen this way one can clearly demonstrate the immense superiority of the insulin pump as a way to deliver insulin. Taking injections is like programming the accelerator function for 24, 12 or 4 hour intervals. You can’t reverse the programming. You are stuck with it. You can only place a new multi-hour program in after the old ones run out or run simultaneous programs at the same time. You don’t have your foot on the pedal. With the pump you have your foot on the pedal. You can ease it back or push down on it. It is not as tight as a normal pancreas, of course, but we are moving toward that.
Another component of the system that must be accounted for is the overall condition of the vehicle (the body). Naturally, if the vehicle is like a Porsche sports car then the accelerator will be tight and responsive. It will want premium fuel. If the vehicle resembles an old beat up pickup truck with low tire pressure then the accelerator will be much less responsive and it will take any kind of fuel. In fact, it might not know what to do if it got premium gas. The carburetor might not be able to handle it and choke. To have a Porsche one must make a higher investment. Everything costs more to have a Porsche; gas, tires, service, insurance, etc. But you drive in style, can get there faster and have more fun. In the system that I have created and use I have made the condition of the vehicle the priority. I practice yoga daily, lift weights, run, walk, take supplements and herbs, get massages, have weekly acupuncture and cranio-sacral sessions and meditate.
As a systems, procedures and training developer I have learned a few things. I would like to tell you about two of them.
First, there are effectively three areas of training:
1.You can impart knowledge.
2.You can present and develop skills.
3.You can introduce and enhance the optimal thought context that should be adopted, held and enhanced as one performs the role or job he/she is engaged in. I call this Attitude Training for short.
As a trainer I know the importance of having influence over the recruiting and hiring process. When recruiting and making a hiring decision one is evaluating the current knowledge base, skill sets and attitude of the prospective employee. I always place more value on attitude than skills and knowledge when hiring. The simple reason behind this is that it makes good business sense. Recruiting, hiring and training takes resources. From a training perspective the cost of imparting knowledge is less costly than developing skills which is less costly than attitude training. The system that I have developed and use to manage life with diabetes considers all three areas of training accordingly.
Second, it is critical to have, what I call, Restrictors or Qualifiers built into the system. These restrictors have both a requirement that must be met to move forward and a corresponding “reward” associated with meeting the qualification. I call the points in the system where the restrictors exist Traffic Lights. You either have a red light which means stop. A yellow which means proceed with caution. Or a green which means “good to go.” There are corresponding action steps (rebuttals) to yellow and red lights. This process is used in effective and creative selling processes. Training is much like selling. Instead of selling products or services you are selling knowledge, skills and attitude. It is my experience that great companies have integrated their selling and training processes (both internally and externally).
My current system can best be presented through a 6 step process I have used in business:
Step 1: Name the Game. What are we playing? What is it called? This game is called: Living with Diabetes or just Type 1 Diabetes.
Step 2: How do you win? What is the objective? The objective must be as specific as possible, measurable, time bounded and works best if written down. My current objective is an A1C result below 7.0 without getting a blood sugar reading below 60 more than 2x per month. Ideally, A1C should be measured every 3-4 months.
Step 3: What are the components of the game? What are the rules? What equipment can I use? What tools do I have? In some games there is a ball, net, game pieces, a board, etc. In this game there are things like…….Insulin, BG meters, syringes, pumps, blood tests, doctors, parents, siblings, friends, food, alcohol, exercise, denial, anger, frustration, acceptance, embarrassment, motivation, attitude, courage, patience, CGM’s, stem cells, CDE’s, eye exams, health insurance, etc. This step is a brainstorming step and at the end of listing as many ingredients to the game as can be thought of then it is important to prioritize them. Which ones have more influence to accomplish my objective?
Step 4: Systems and Procedures. This is the creative step. I have been playing this game for 32 years. When I first got it I took one injection a day, peed on a strip to see how much sugar I was “spilling” in my urine, ate food to avoid feeling low and often times felt depressed and angry. My objective was survival. The name of the game hasn’t changed. Today, the objective is more aggressive and achievable. The tools available have gotten more effective. My current system makes my workouts, my yoga practice and meditation sessions “have to’s.” When I keep my body in shape and very active all of the other functions and components of the system seem to work better. Food is very important but I don’t obsess over it. I am considering changing the objective to A1C’s under 6.5. To do this I know that food becomes much more important. My attitude with insulin is that less is more. Less insulin and less fuel then more control. This makes sense when using the metaphor of the the accelerator.
Step 5: Practice and Implementation. What do I do? What areas do I need to practice? How am I going to operate within the system? What is my role? How do I want to play? I find myself coasting a lot lately. I have eased up now that I have been able to achieve my objective consistently. I know that my role is to push myself. I also know that I want to share with others what I have experienced, can do and must do. This seems to be a necessary added component if I want to accomplish my new goal of A1C’s of 6.5 and below.
Step 6: Managing Outcomes. What do I do with the results that I achieve? How do I measure them? How do I celebrate? What do I do if I don’t achieve my desired outcome? One of my training mentors often said that “goals are for planning and results are for pleasure.” Contained within this quote is a critical attitude. We are used to setting goals and beating ourselves up over the shortfall. I believe that it is very important to learn how to celebrate results, whatever they are. A perpetual motion system is in constant motion and uses it’s accomplishments as stepping stones to adjust and grow. It does not have time to lament on its shortcomings. Of course, we do it anyway as we journey towards perfection. By perfection I don’t mean perfect blood sugars. Perfection is contained in the spiritual aspect of this disease and the idea behind Buckminster Fuller’s perpetual motion system quote.
So, a few ideas. Actually it is really one idea with a few sprinkled in for support. Kind of like the way the 6 step process works. I think the pump company can, should and must “take over” the education and training of Type 1 diabetics. I am not suggesting that the doctor is eliminated from the system. I wish we could but that is probably a bit of a personal bias of mine. By take over I mean that the pump company should be the primary resource for the imparting of knowledge, development of skills and introduction and development of attitude training.
Why? A few reasons. First, because you are the ones that have the tools. You have the pump, the strips, the CGM, the support and the best information on how to use them. Second, the doctors are not getting the job done. They are failing. Let me be specific. They are not getting enough of a percentage of their patients below the 7.0 A1C range. Third, I believe it makes good business sense if, in fact, you want to grow and are poised for growth. I think that pump sales would increase dramatically and the income from taking over the responsibility of training would add to the bottom line. If this happened test strip sales would also increase and prospective clients for the CGM’s and future technology would be cultivated. Finally, it would have beneficial results to those who have the disease and those who support them.
How? I don’t know. I have too many information gaps. I don’t know enough about your company. I don’t know much of your industry. I don’t know all I need to know of the medical laws and protocols. I am not an expert in medical insurance. I don’t know a lot of stuff. I do know what it is like to live with this disease for 32 years. I have traveled the journey from hoping to spend a few hours balancing on the high wire to flying a fighter jet to gliding along the wind currents as I attempt to stay in normal blood sugar range. In presenting my ideas here I do so humbly. I have not always chosen the “right “ path. I am not a champion golfer or National beauty queen. I have not climbed MT. Everest nor have I run a marathon. I am quite lucky to be alive. I lived most of my life with blood sugars in the 200’s or maybe higher, I am not sure. I tested sparingly to save on strips. There were a few years I did not even see a doctor. Yet here I am today, healthier than ever and paving a way to help others. I have truly been blessed. Ayn Rand said in her book Atlas Shrugged, “If you question your results check your assumptions.” If Type 1 diabetics are not achieving A1C’s below 7.0 then perhaps we should begin to check our assumptions. I think this is where the answers to the “how” will be found. I would like to explore with you and your team some of these assumptions, challenge them, brainstorm ways to “change the game,” create new goals and objectives, new systems and procedures, new training and implementation strategies and celebrate the results.
The current context in which Type 1’s look for help focuses them towards their doctor. This doctor could be a Primary Care Physician or an Endocrinologist. How the doctor treats the patient is pretty much up to how the doctor chooses to treat. There is no set protocol for them to rely on. Some are better than others. I think this is the first area to look at. Animas could create the platform. Or at least a platform. And it makes sense. You make, sell and service the best “accelerator” in the industry. Furthermore, I believe you have a responsibility to ensure that your product is used in the way it was designed in order to realize higher performance results and for safety concerns. I believe you can do this by becoming the benchmark in training. Again, how this is done involves the engagement of professionals in the medical and insurance fields and those in other areas of expertise. The role of both the patient and the doctor changes.
I have several ideas on how this would look and what it would take. Here are a few: An Internet based system could be used to communicate with doctors, patients, insurers and trainers. Regional Animas Training Centers could be established. I know that most of your trainings are done either at the doctor’s office or the patient’s home, and are done one on one. I don’t believe this is either the most efficient or the most cost effective way to train people on the pump. I believe Animas should build into both the training, and therefore, the sale of pumps, Restrictors or Qualifiers. I think this is perhaps the most important aspect of what I am asking to be considered here. The initial pump training could have qualifiers as to past A1C’s, charting and attendance requirements, etc. An Advanced Training should require a more rigorous qualification process. For example, in order to participate in this training you need access to 300 test strips per month. Perhaps, a qualifier is put in that two consecutive A1C results below 8.0 are needed. Or that a person must be within 20 lbs of ideal weight. Of course, the doctor needs to be involved, sign off on and be informed throughout any training. Then there must be an incentive or reward for making it through the training and achieving its objectives. Perhaps one becomes a preferred Animas client with certain benefits. I am not sure how the insurers will look at this. I would suspect that if results can be demonstrated then they would be interested and responsive. The initial pump training could be a 1 week process at the training center. An Advanced Training could be longer. The internet based application could keep everyone in the loop.
Briefly shifting over to the sales process. This is where Animas could “take off.” The doctors simply do not have the time and resources to do the kind of education and training needed. Animas would sell a solution package with a pump as part of the package instead of just the pump. This solution is not just a solution for the patient but also for the doctor.
Granted, there are a percentage of people who have Type 1 Diabetes who will “get it.” These people don’t need the advanced training. They may be interested in an even higher level of training like the one I am currently working on for achieving 6.5 A1C results or below. This may look more like an Ashram experience (hyperbole) than a diabetes training program. Also, there are a percentage of people who will not be willing to confront this type of training. They are seemingly happy taking their medicine and carrying on with their lives. The truth is that some people don’t qualify for the pump. This is great news for sales. Restrictions in the sales process injects integrity into the process. It also cultivates motivation. Sync this with the training and, in my opinion, you have a winner. The current system is thirsting for integrity. .
What role can I play? Perhaps Animas would want to test this approach. South Florida is a perfect region to test it. We have three counties, Dade, Broward and Palm Beach that could be serviced by a centralized Regional Office. I could help in the brainstorming, development and implementation steps. My Dream is a a 10 day intensive for those wanting to get to the 6.5 level in a resort-type location. My company has created some really innovative internet based applications that we use to communicate with our clients. We service over 15,000 clients and employ close to 100 people. We own three commercial properties and have a real estate company. We have a not-for-profit company that reaches out to others in the area. Perhaps we could help. I am not looking for employment. However, I believe your company is the ideal group of people to partner with in some way to further my efforts in making a difference with others who are dealing with Type 1 Diabetes.
I have expressed my appreciation for your product and your company. I have attempted to give you a taste of my current system. Also, I have presented a few ideas. As I said prior, I feel blessed to still be here and to be doing well. I believe this blessing carries with it a responsibility. I deeply desire to be of service and to share my experience and ideas. I am not a doctor, nurse, CDE or health care professional. I am a 46 year old man in search of balance, integrity and meaning. I acquired the challenge of living with Type 1 Diabetes at the age of 14. I have keenly focused my attention on the the challenge presented by the disease for the past 3 years with the help and support of others. I know it is part of my life purpose to help others who are affected by this condition. The Kabbalists say that the purpose of this life is to “transform the desire to receive for the self alone to the desire to receive for the sake of sharing.” I am not Jewish nor am I a Kabbalist. But I believe they are on to something here. Perhaps this is the foundation for the ultimate perpetual motion system. The transformation I have experienced in my life has been profound and I now seek to share with others.
Thank you for reading my letter. I recognize that it is a bit long. I attempted to restrict it to a few primary topics. There is so much more I have written about, documented and envision. My hope is that you or someone in your organization will see something in it that sparks a line of interest that Animas or Johnson and Johnson is already working on or wishes to look at. I am willing and available to be a resource for you. I look forward to an opportunity to meet you. Perhaps you will be in South Florida sometime soon. It only makes sense to get down here for a brief visit during the winter months. Until then……..