Wednesday, October 22, 2014

Letter to My Senator

Dear Senator Gillibrand,
Medicare CGM Access Act of 2014' (H.R. 5644), as introduced by Representatives Reed, DeGette and Whitfield, that would ensure Medicare coverage of continuous glucose monitors (CGMs). The Senate companion bill, S. 2689, was previously introduced by Senators Collins and Shaheen.
The CGM is an FDA-approved, physician-prescribed device that detects and displays blood glucose levels continuously, and reveals trends in glucose levels that often go unnoticed by using traditional finger-stick measurements alone. The device enables a person with diabetes to react to rising or falling blood glucose levels before they become dangerous. There is extensive clinical evidence that shows the use of a CGM improves diabetes management. Based on this evidence, national diabetes clinical guidelines recommend the use of CGMs and the devices are covered by nearly all private health plans.
Unfortunately, people with diabetes who become Medicare beneficiaries no longer have coverage for their CGM, even if they have been successfully managing their diabetes with the device. With insulin-dependent seniors being at greater risk for hypoglycemia and having higher emergency room use and hospitalization rates, it makes sense for Medicare to cover this technology.
The 'Medicare CGM Access Act of 2014' would resolve this issue and help pave the way for coverage of the next generation of CGM-related technologies, such as artificial pancreas systems.

Thank you
Richard Vaughn

Thursday, October 16, 2014

Type 1 Diabetics Are LIving Longer

"People with type 1 diabetes live almost as long as other Americans, a recent study finds..... Better diabetes care has narrowed the gap, researchers said.....Until recently, no one would have predicted that people with type 1 diabetes could have a nearly normal life span."
The article below was published several years ago. Things are probably even better now. I am 75, with 69 years of T1, and am very healthy. Some T1 people have lived into their 80s, and a few into their 90s. Researchers are busy looking to find out what these people did right.


Saturday, October 11, 2014

Avoiding Diabetes Complications


A few years ago the Diabetes Health magazine published an article stating that diabetics should maintain a good BG average and A1c, and avoid a roller coaster type of control. The roller coaster control involves having many highs and lows, and that would involve data widely scattered above and below the average. Blood sugars that rise and fall on the path of a roller coaster are traumatic to the body. Experiencing this trauma over and over again for a long period of time can lead to diabetes related complications, even if the A1c is good. I will demonstrate with two examples.
Patient A has test results 40, 55, 65, 100, 135, 145, and 160. The average is 100, but there are numbers that indicate unhealthy highs and lows.
Patient B has test results 72, 80, 94, 100, 106, 120 and 128. The average is again 100, but the data is more closely packed, and none of the numbers are undesirable.
Patient B is experiencing much better control, and is much less likely to have diabetes complications. The "standard deviation" (SD) is a measure indicating how closely the data is distributed above and below the blood sugar average. Patient A had much larger deviations from the average of 100. Patient B had smaller deviations, so the SD was much better. I try to keep my SD close to 20, but it is difficult to do. My A1c's have been in the 5.4-6.4 range for almost 15 years, but when I have too many highs and lows, my SD is higher and I can feel the neuropathy symptoms in my left foot. I used to have some spots of retinopathy in both eyes because of a roller coaster control.
The purpose of this discussion is to demonstrate the fact that a very good blood sugar average can still involve diabetes complications if there is a significant number of highs and lows over a long period of time. Don't rely solely on a blood sugar average and A1c. Try your best to avoid so many highs and lows. A good average accompanied by a stable control is the best way to avoid complications. Proper dieting and well chosen exercise routines can help very much in avoiding the highs and lows.
I had A1c's no higher than 6.1 for almost 10 years, but had the beginning stages of neuropathy and retinopathy. My control had been tight, but it was necessary to make it even tighter. I stopped having so many highs and lows and after a few months had passed, the retinopathy disappeared. The neuropathy is still present in one foot, but I rarely experience any pain. If I have high blood sugar for several hours there is sometimes mild pain during the night. I have been a diabetic for 69 years, and have not had any serious complications. I want to keep it that way!!

Friday, October 10, 2014

Good Control, the Key To Success

Good Control Is Usually The Key To Success

When I participated in the Joslin Medalist Study in 2009, the director was there making sure everything was done properly. She gave me some interesting info. The medalists are type 1 diabetics who have lived with diabetes for 50 years, or more. I was told that some participants had never taken very good care of themselves, and they eat almost anything they want. They do take insulin, but they have no serious complications. There are also other participants who have some rather serious complications, but they have taken very good care of themselves. So I asked if these two groups were a significant part of the 500+ medalists who had participated at that time. She said that the two groups were rather small. The great majority of the participants who had practiced good diabetes management were in good health, with no serious complications. It seems that the members of the small groups mentioned above are exceptions to the rule. I am one who has always done everything possible to have stable control, and it has paid off.

At the present time there have been approximately 950 participants in the Medalist Study, and they plan to continue until there have been 1000 medalists participating. The JDRF, the NIH, and private sources are funding the study. Some very interesting things have been discovered.

I have mild nerve damage after 69 years of type 1, but there is no other diabetes related problem. I hate to think what might have happened if had been in denial during my early years. I want to be the first type 1 diabetic who lives 100 years with diabetes. That would happen on September 15, 2045, and I would be 106 years old. Does anyone want to attend my celebration on that date? 

Friday, October 3, 2014

My A1c Testing History

A1c testing was not available until 1976. My doctor started A1c's with his patients in 1980. I was diagnosed in 1945 when I was 6, and I must have had very high blood sugar until about 1988. That is when my A1c's began improving. All that and I am alive after 69 years of type 1, and I have no complications except for mild nerve damage. If type 1 children have a lot of high blood sugar that does not necessarily mean they will suffer diabetes complications. I am living proof of that. Do the very best you can with your diabetic children and keep this in mind.
As part of my preparation for my taking part in the Joslin Medalist Study I was supposed to have a listing of all my A1c's that have ever been done. My doctor was very cooperative, but there are several gaps in the list. The years 1990-1994 were not available.
Below are the A1c's that my doc was able to retrieve from his files. I have updated for 2010-2012.
1980...10.6, 9.6, 9.0
1981...11.8
1983...9.2
1984...9.2, 9.7, 8.9
1986...11.1
1987...8.0, 9.8, 10.3
1988...10.5, 7.7, 7.7
1989...7.3
1995...6.8
1997...6.0, 5.4
1998...6.5
1999...6.8, 6.7, 6.5
2000...6.3, 6.1, 5.5
2001...5.8, 6.0, 5.6, 6.0
2002...6.0, 6.4, 6.2, 6.0
2003...5.6, 5.4, 5.9
2004...5.9, 5.7, 5.8, 5.6
2005...5.6, 5.8
2006...5.6, 5.7
2007...5.5, 5.6, 5.7, 6.1
2008...5.7, 5.9, 5.7, 5.6
2009...5.6, 5.8, 5.8
2010...5.7, 5.6, 5.6, 5.4
2011...5.6, 5.7, 5.8, 5.6
2012...6.1, 6.1, 6.0
Notice the drop from the 10's to the 7's in early 1988. That is when I read an article in a magazine that said diabetics should follow a low carb diet. My doctors never told me that. Then about the start of the new century I was permitted to use basal/bolus control. In 2007 I started pumping. My A1c's have been very good during the new century because I finally knew what to do to get good control. I was very successful for several years before pumping too, but using an insulin pump makes good control so much easier.
I took only one injection of beef/pork insulin per day during my first 40+ years. Can you imagine what my A1c's would have been during those years? Those were the years before my doctor started having my A1c's done.
I feel so lucky to be alive and healthy, without complications. Is it good genes? Maybe the Joslin Study will help answer those questions.

Sunday, September 28, 2014

Do You Hide Your Diabetes?

Do you hide your diabetes?
For many years after my diagnosis in 1945, I did not know another diabetic. I mentioned my disease to a couple of friends when I was a teen, but they looked so puzzled. They did not know what I was talking about, and I doubted they even believed me. So I hid my diabetes for many years, but I did try telling a few teachers in high school and college. They did not seem to understand, and maybe they did not believe me. When I was a college sophomore I had a very bad hypo while taking my first calculus test. When I approached the teacher and explained that my vision was blurred, and I could not read the test paper, he would not help me in any way. That was the only test I ever failed. There seemed to be almost no knowledge about diabetes in my early years.
I dated and told my girlfriends. It did not seem to make a difference to them that I was a diabetic. That was probably because they did not know enough about it to be concerned. The first person I knew who really was concerned was my wife, but only after we were married. She was not concerned before we were married because she never saw me have a hypo. I was high much of the time on animal insulin. I did not tell my students after starting my teaching in 1962. There did not seem to be any reason for doing so. I was alone as a diabetic, except for my family, until I was married. My wife and I have been married for 50 years, and she has been so wonderful in so many ways with helping me with my diabetes. But there was still something missing!
In July, 2006, I found diabetes on the internet. That essentially changed my life, in a very important way. There were so many people online who were diabetics, or they had family members with diabetes. We talked with each other, and we learned so many new things. I believe that at least 80% of what I know about diabetes was learned on the internet. I was helped in so many ways, and my control and my life improved. I became a diabetes advocate to many online people who needed to know the things I had learned. So many parents of diabetic children have found me to be an inspiration because I was diagnosed when I was 6, and am very healthy now that I am 75.
After 69 years as a type 1 diabetic, I am very comfortable telling people about my diabetes, and about diabetes in general. It is very comforting and rewarding to give and receive help online. I will never again hide my diabetes. I hope my online friends feel the same way!

Tuesday, September 23, 2014

Double Diabetes

DOUBLE DIABETES

There were no diabetes "types" when I was diagnosed in 1945. All people diagnosed with diabetes were treated with insulin taken from pigs and cows. That crude form of insulin gave me back my health. In the years 1936-1939 it was discovered that there were two types of diabetes, but it was not until 1959 that the labels Type 1 and Type 2 were attached. Oral drugs for Type 2 diabetics were introduced in the years 1955-1956.

Now, in current times, we are seeing more and more people with characteristics of both type 1 and type 2 diabetes. These individuals have "double diabetes". This occurs when:

1. A person with type 1 diabetes becomes overweight and develops the basic feature of type 2 diabetes – insulin resistance (IR). Typically, the type 1 diabetic would then use a type 2 medication to help control the IR. Insulin would still be necessary as well.

2. A person with type 2 diabetes has one of the key features of type 1 – the presence of antibodies in the blood against the insulin producing beta cells of the pancreas causing a decrease in the body's ability to produce insulin. The decreased insulin production can then lead to the type 2 diabetic becoming insulin dependent. These individuals still use their type 2 medication for their IR.

So double diabetics may have initially been either type 1, or type 2. Once they have become double diabetics they have IR, they are using insulin, and they are using a medicine (usually metformin) for their IR. I have several type 1 friends, and type 2 friends, who are double diabetics. Some of my type 2 friends are using a pump and a CGM.

In the 1990s I stopped using animal insulins, and began using synthetic insulins. I began gaining weight, even though I was following a much healthier diet, and eating fewer carbs. The only thing that had changed was my insulin. I have read many reports that say the synthetic insulins cause our cells to store fat. Maybe that was the reason for my weight gain, but I did not know that information until much later. I had never been more than five pounds above my ideal weight (185) until the 1990s. By the year 1997 I weighed 242 pounds. That was a net gain of 57 pounds. A lower carb intake and plenty of exercise did not seem to help at that time.

Finally, in 1998, I was diagnosed with insulin resistance. I had several relatives with Type 2 diabetes, and it seems likely I had the Type 2 gene. The gene and the weight gain are likely the explanation for my insulin resistance. In the early 2000s I reduced my daily carb intake, increased my amount of exercise, and lost 34 pounds. I initially used avandia for my IR, but started using metformin starting in early 2011. Using metformin for one year was very good for me. That medication has helped many diabetics lose weight. I have lost an additional nineteen pounds, and am presently only four pounds above my ideal weight. Despite the weight loss, I still have IR. Metformin, eating an average of 140-150 carbs per day, and getting lots of exercise has kept me in good health. My A1c's are typically below 6.0, and except for some mild nerve damage, I do not have any diabetes complications. Double diabetes can be controlled, and my health is just as good now as it was before I became a double diabetic.