2016 Medtronic Diabetes Advocate Forum: Transforming Diabetes Care Together

Laddie_Head SquareLast week I had the opportunity to attend the 2016 Medtronic Diabetes Advocate Forum in Northridge, CA. This was the first time I have been invited to such an event and I found it to be a great experience. The advocacy power in the room was palpable with representatives from 5 Latin America countries, 2 from Canada, and 14 from all over the US. I was proud to be the one with gray hair in the group photos. My social media skills were not quite as adept as those of the younger attendees, but I represent a growing population: seniors living with diabetes. I felt welcomed and respected by all.

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In the last two years Medtronic Diabetes (MDT) has been reorganized to move from a product-based pump and sensor company to a patient-centric model. The MDT executives with whom we met described the future role of MDT as a “holistic diabetes management company.” They were consistent and comfortable using phrases such as:

Inspired by people

Global human insights

Behind numbers are the patient

No two journeys are the same

Together we can make change

The Medtronic Vision was shared often and highlighted on walls throughout MDT headquarters:

TRANSFORMING

DIABETES CARE TOGETHER,

FOR GREATER FREEDOM

AND BETTER HEALTH

This idealistic philosophy envisions a table where all of the players meet with the patient as the focus. Doctors, pharma/tech companies, government, payers, and patients work together to achieve better clinical outcomes and high levels of satisfaction for patients. This is easy to draw on a white board, but unfortunately not the reality for most people affected by diabetes.

What is the role of Diabetes Advocates in this vision? I like to think that we are working to bridge the gap between how things are and how things should be. We are fighting to identify and throw the “Lack of” monsters under the bridge: lack of availability, lack of access, lack of coverage, lack of education, and lack of respect.

Bridge to Good Health 2

There is a huge gap in diabetes care between the “haves” and the “have-nots.” This disparity is significant in the United States and becomes even more staggering in a global view. In the conference room of advocates we had the mother of a child who was part of an artificial pancreas trial. In contrast we had representatives from countries with little or no access to diabetes education and advanced technology. Missing from the room were people from all over the world with marginal access to insulin and diabetes supplies.

The future success of a company like Medtronic is tied to providing products and services that deliver value-based quality healthcare. Positive clinical outcomes and patient satisfaction are worthy goals. Those are big words to describe what we all want: a happy and successful life with and despite of diabetes.

We advocates have a symbiotic relationship with companies like Medtronic. They need us as the faces and voices of people with diabetes. We need them for products, services, and the ability to open doors to decision-makers. I believe that their success results in better health for those of us with diabetes. Similarly, better outcomes for me should ultimately result in a healthier bottom line for them. Sitting at the table together gives both of us a better chance for success.

Transforming diabetes care together, for greater freedom and better health.

 

Disclosure: Medtronic Diabetes paid for my travel and hotel expenses to attend the forum. As always, my thoughts and opinions are my own.

Considering the Heart | Part 2 | Women with Type 1 Diabetes

Laddie_Head SquareIn Considering the Heart | Part 1 | Type 1 Diabetes, I addressed my pretense of belonging to the “Not Me” club. As a woman, it is easy to think that I have a similar “Not Me” pass when it comes to heart problems because isn’t heart disease a man’s disease? Based on the attention given to breast cancer in this country, shouldn’t cancer be my biggest concern? Wouldn’t I have symptoms if I had cardiovascular disease (CVD)? Won’t I know if I am having a heart attack or a stroke? Although I know that my risk for heart disease has risen because I am in my 60’s, aren’t younger women protected from cardiac problems?

Let’s burst these bubbles right away—

FACT:  Heart disease is the leading cause of death for women in the United States. About 1 of every 3 female deaths is the result of heart disease.

FACT:  Every year since 1984, more women than men have died of heart disease in the United States. Alarmingly, women are twice as likely as men to die following a heart attack.

FACT:  Heart disease is more deadly than all types of cancer combined. Six times as many women will die of heart disease in the coming year compared to deaths from breast cancer.

FACT:  Heart disease may be silent and not diagnosed until a woman has a heart attack or stroke. Almost two-thirds of women who die suddenly from CVD had no previous symptoms.

FACT:  Symptoms of heart attacks can be different for women compared to men. Although many women experience the most common symptom of chest pain, about 40% Considering the Heartof women experiencing a heart attack have no chest symptoms at all. Instead of or in addition to pain, they may have severe fatigue, shortness of breath, indigestion, and anxiety.

FACT:  Although heart disease is more common in older women, it is a threat to all women. The incidence of sudden cardiac death for women in their 30’s and 40’s has risen 30% in the last decade.

The above statistics are relevant to all women. Now for a few disturbing facts that pertain to women with Type 1 diabetes.

♥︎♥︎♥︎  Although rates of CVD in the general population are lower for premenopausal women than for men, this female sex protection is not seen for women with Type 1 diabetes. At all ages women with T1DM are more likely to have a CVD event than healthy women.

♥︎♥︎♥︎  According to one large meta-analysis of sex-specific mortality from 1966-2014, women with Type 1 diabetes were found to have nearly twice the risk of dying from heart disease compared to men with T1 and a 37% increased risk of stroke.

♥︎♥︎♥︎  CVD risk factors are more common in children with T1DM than for the general population and even at a young age, girls with Type 1 have a higher risk burden than boys with T1DM.

In the past and even currently, the incidence of heart disease in women has been under-estimated. I follow an excellent blog about women and CVD disease titled Heart Sisters. Patient Advocate Carolyn Thomas launched the blog in 2009 to provide current and relevant CVD information to all women. She had previously suffered a heart attack with a 99% blocked coronary artery two weeks after being sent home from the ER with a diagnosis of acid reflux. A startling statistic in her About Me page says it all:

“According to research published in the New England Journal of Medicine, women my age and younger are seven times more likely to be misdiagnosed in mid-heart attack and sent home from Emergency compared to our male counterparts presenting with identical symptoms.”

There is hope that the diagnosis/care gap for women with heart disease is being addressed as evidenced by a January 2016 AHA Scientific Statement titled “Acute Myocardial Infarction in Women.” This paper received broad coverage by mainstream media, including this report on CBS News. The most powerful statement in the CBS video is by NYC cardiologist Dr. Holly Andersen: “Heart disease in women is under-researched, under-diagnosed and under-treated.

Most of us with Type 1 diabetes have learned the value of education and how to advocate for ourselves.  As women, particularly women with Type 1 diabetes, we need to do the same in regards to our cardiovascular health. A lot of the information in this post seems to be gloom and doom. In general I prefer to be an optimist and view it as a wake-up call to intensify my efforts to address my controllable risks for cardiovascular disease. Because CVD is highlighted in the ADA Standards of Medical Care in Diabetes—2016, those of us with diabetes may have a head start on other women in having these conversations with our doctors. Below you will find some links to launch your education on women and cardiovascular disease.

In the concluding section of this 3-part series on CVD, I will share my experiences and thoughts on my cardiovascular risks as a woman with diabetes. There is no doubt that although I follow most of my doctors’ recommendations, I have often dismissed these risks in the past. It is a difficult post to write because like all of you, I am dealing with statistics and probabilities along with no black-and-white answers or guaranteed outcomes. For the most part, I just don’t know.

Please remember that I am not a medical professional. Although this blogpost presents a lot of information about women and cardiovascular disease, it is by no means complete. Do your homework and talk to your medical professionals about your risks.

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***   Relevant Links for Women & CVD Disease   ***

AHA statement on women and heart disease January 2016

American Heart Association Go Red for Women

Am I Having a Heart Attack? | Heart Sisters

Heart Disease Statistics | The Heart Foundation

Myths & Facts | Heart Sisters

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***   Relevant Links for Women with Type 1 Diabetes & CVD Disease   ***

ADA Women, Coronary Heart Disease and Diabetes

AHA/ADA Scientific Statement: Type 1 Diabetes Mellitus and Cardiovascular Disease: A Scientific Statement From the American Heart Association and American Diabetes Association

How Diabetes Differs for Men and Women, Diabetes Forecast, Oct., 2011

Women with Type 1 Diabetes “Twice as Likely” as Men to Die from Heart Disease

***  Related Posts  ***

Considering the Heart | Part 1 | Type 1 Diabetes

Considering the Heart | Part 3 | My Story

Considering the Heart | Part 1 | Type 1 Diabetes

Laddie_Head SquareThose of us with any type of diabetes are constantly told that we are at high risk for cardiovascular disease (CVD). As someone who is in relatively good health despite 39 years of Type 1 diabetes, I have been quick to play the “Not Me” card. Although I follow through with all of the tests that my doctors recommend, I do them with the conviction that I don’t have heart disease. My internal dialog has been along the lines of:

♥︎  Heart disease affects people with Type 2 who have metabolic syndrome. Metabolic syndrome is defined on Wikipedia as “a clustering of at least three of five of the following medical conditions: abdominal (central) obesity, elevated blood pressure, elevated fasting plasma glucose, high serum triglycerides, and low high-density lipoprotein (HDL) levels. Metabolic syndrome is associated with the risk of developing cardiovascular disease.”

♥︎  I have diabetes because of an autoimmune attack on my pancreas. That doesn’t have anything to do with metabolic syndrome or heart disease. I am not overweight nor do I have other characteristics of metabolic syndrome.

♥︎  I understand that heart disease can result from “poorly controlled” Type 1 diabetes. My A1c’s are well within the ADA guidelines and have been for a long time. My diabetes is “well controlled.”

♥︎  All of the recommendations for addressing cardiac risk factors for people with diabetes are based on research of people with Type 2 diabetes. There are few studies of specific cardiac risks for people with Type 1 diabetes, especially for those with A1c’s in target range.

♥︎  I am extremely active and exercise daily. I have no pain or fatigue that might suggest CVD.

♥︎  I am a woman and heart disease affects more men than women.

Considering the HeartI could go on and on listing excuses for discounting my risk for heart disease. Instead I decided to do some research by starting with the Google search term “Type 1 diabetes and heart disease.”

I was surprised to find quite a few links. Some were relevant. Others were just the inclusion of Type 1 diabetes into “general” diabetes, really meaning Type 2. By far the most helpful document I found was a 2014 article titled “Type 1 Diabetes Mellitus and Cardiovascular Disease: A Scientific Statement from the American Heart Association and American Diabetes Association.” This statement was prepared by a committee of physicians chaired by Sarah D. de Ferranti, MD, MPH and is a thorough investigation into current knowledge and studies on the relationship of Type 1 diabetes and cardiovascular disease. The introduction to the statement begins:

Despite the known higher risk of cardiovascular disease (CVD) in individuals with type 1 diabetes mellitus (T1DM), the pathophysiology underlying the relationship between cardiovascular events, CVD risk factors, and T1DM is not well understood. Management approaches to CVD reduction have been extrapolated in large part from experience in type 2 diabetes mellitus (T2DM), despite the longer duration of disease in T1DM than in T2DM and the important differences in the underlying pathophysiology.”

This statement is long, but very readable. If you have Type 1 diabetes, you should definitely read it or at least bookmark it for future use. The full text of the article is available for free. There is no way that I can summarize the statement completely, but below I will share some things that I learned:

♥︎  Although I tend to think of the link of ‘heart disease” to Type 1 diabetes, I need to consider the whole CVD package of coronary heart disease (CHD), cerebrovascular disease including strokes, and peripheral artery disease (PAD).

♥︎  While admitting that more research is needed to understand the incremental risk and clinical presentation of CVD in people with T1DM, the authors state that “Overall, CVD events are more common and occur earlier in patients with T1DM than in nondiabetic populations.” Statistics mentioned are that the age-adjusted risk in Type 1 is about 10 times that of the general population and that CVD events occur on average 10-15 years earlier than for matched non-diabetic subjects. One analysis of 5 studies indicates that for each 1% increase in A1c, the risk for peripheral artery disease goes up by 18%.

♥︎  Although rates of CVD in the general population are lower for premenopausal women than for men, this female sex protection is not seen for women with Type 1 diabetes. At all ages women with T1DM are more likely to have a CVD event than healthy women.

♥︎  Atherosclerotic abnormalities can be seen in children and adolescents with T1DM.

♥︎  Autonomic neuropathy in T1DM can result in silent (asymptomatic) cardiac events with delayed diagnosis due to absence of pain and other vascular symptoms.

♥︎  The follow-up study to the Diabetes Control and Complications Trial (DCCT: 1983-1993) was the Epidemiology of Diabetes Interventions and Complications study (EDIC: 2005). EDIC reported that intensive therapy reduced the risk of cardiac events by 42%.

♥︎  The downside of improved glycemic control is that it can lead to weight gain and insulin resistance in people with Type 1. It is assumed that as A1c levels improve, the importance of general cardiac risk factors such as central obesity, high blood pressure, high LDL cholesterol, and high triglycerides gain increasing importance.

♥︎  Most research on the incremental risk and clinical presentation of CVD in people with diabetes is based on studies of people with Type 2 or no distinction is made as to type. However, the studies which are specific to Type 1 find increased risks for people with Type 1 when compared to healthy control subjects.

One other article of particular interest is from the August 2013 issue of Diabetes Forecast and is titled What’s Behind Heart Attacks in Type 1 Diabetes? This article highlights the research of Joslin Diabetes Center Investigator Myra Lipes, MD and outlines the idea that autoimmunity may be behind the increased rates of CVD for people with Type 1. Initial studies have suggested that an out-of-control autoimmune response post-heart attack is responsible for the fact that people with Type 1 diabetes are at high risk for poor outcomes after a heart attack.

Summary:  I have learned a lot about cardiovascular disease and Type 1 diabetes. Although more studies are needed to understand the specific CVD risks for people with Type 1 diabetes, there is definite proof that I should not continue to play the “Not Me” card. In my next post of this 3-part series on cardiovascular disease, I will share information on the particular risks that women have for heart disease.

Please remember that I am not a medical professional. Although this post presents a lot of information about cardiovascular disease and Type 1 diabetes, it is by no means complete. Do your homework and talk to your medical professionals about your risk. 

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***   Relevant Articles   ***

AHA/ADA Scientific Statement: Type 1 Diabetes Mellitus and Cardiovascular Disease: A Scientific Statement From the American Heart Association and American Diabetes Association

Type 1 Diabetes and Coronary Artery Disease, Diabetes Care, November, 2006

Type 1 diabetes and cardiovascular disease, Cardiovascular Diabetology 2013

What’s Behind Heart Attacks in Type 1 Diabetes?, Diabetes Forecast, August, 2013

Wayback Wednesday: All About Diabetes and Heart Health, Diabetes Mine

 

***  Related Posts  ***

Considering the Heart | Part 2 | Women with Type 1 Diabetes

Considering the Heart | Part 3 | My Story

Countdown to Medicare with Type 1 Diabetes: 12 Months

Laddie_Head SquareA year from today I will be on Medicare.

I have been one of the privileged. I have always had good health insurance and have never had to worry about running out of insulin or test strips. I have never had to choose between buying groceries and filling my prescriptions. I have had access to insulin pumps and full insurance coverage for a continuous glucose monitor.

I don’t exactly know what to expect with Medicare. Over time I suspect that I will figure out most of what I need to know. Right now I feel as though I am looking into the dark abyss of the unknown.

I know that there will be a lot of hoops to jump through to obtain a sufficient number of test strips and supplies for my insulin pump. I know that due to Medicare law I will no longer be eligible for medical device upgrade programs. I know that CGM’s are not covered by traditional Medicare and I will continue to advocate to have that changed. I know that a handful of Medicare Advantage plans cover CGM’s and I will have to do my homework to choose the best option for me. Because I use an insulin pump, I will purchase my insulin under Part B and I have heard nightmares about finding suppliers. The newly-instituted competitive bidding program for diabetes supplies worries me.

I currently pay a huge monthly amount for health insurance. It is possible that even if I must self-fund a CGM, Medicare will be a better financial deal than my current situation. I know that I will have a lot of decisions to make as I select my Medicare coverage and I suspect it will take many hours to figure out how things work. I know some people who have cruised into Medicare with few problems. I know others who have struggled to get test strips, pump supplies, and insulin.

There is a sadness in realizing that I will probably not get access to any or all of the new technologies and medications coming to market in future years. Things like the artificial pancreas, encapsulated insulin-producing cells, and smart insulin will likely not receive Medicare coverage for many years, if ever. At the same time I have to remember that I was diagnosed with diabetes in the days of one daily injection of a pork- or beef-based insulin. There was no home blood glucose testing and I peed on Diastix strips to get an approximation of what my blood sugar was several hours earlier.

The likelihood that I won’t always have the newest and greatest doesn’t mean that I won’t thrive under Medicare. Medicare is not something that I have a choice about and therefore I will make it work. I am expecting roadblocks and hassles in getting the medical supplies and medications that have always been easily purchased. I’ll probably scream as I navigate automated menu systems on my phone. I’ll probably rant and rave when things don’t go the way that I expect. But I will learn and I will be fine.

Many years ago very few people with Type 1 diabetes lived long enough to make it to Medicare in relatively good health. People like Richard Vaughn and Tom Beatson were a rarity. In coming years more and more of us with Type 1 will be reaching Medicare age. We have a lot of learn about Medicare and Medicare has a lot to learn about our needs.

My aim is to chronicle my journey as I countdown to Medicare. Over the last year I have occasionally grown tired of blogging. However, I have never doubted that I want to keep Test Guess and Go going as a storybook about Medicare with Type 1 diabetes. Right now I have no great words of wisdom to share. For better or worse I am on a one-way road to growing older with Type 1 diabetes and I don’t don’t plan to spend my senior years complaining or in poor health. So let’s get going….