Friday Notes

Laddie_Head SquareYesterday was a busy diabetes day. In addition to just having diabetes (and believe me, that’s enough!), I attended an advocacy training program sponsored by the American Diabetes Association (ADA) and there was a vote by an FDA Advisory Committee regarding the Dexcom G5.

Number #1: My DiabetesNothing momentous to say about my diabetes except that yep, I’ve still got it. I had a big unexpected BG spike after a restaurant salad lunch. Maybe there was hidden sugar in the salad dressing. Maybe my glass of wine decided to be a problem. Maybe it was the mid-morning peanut snack dosed with an extended bolus. Maybe it was because it was 90+ degrees outside with off-the-chart humidity even though I was comfortable inside with air conditioning. Maybe it was because it was Thursday. This is the sort of stuff that makes it a miracle that those of us dealing with Type 1 even have a modicum of sanity left in our lives.

Number #2: ADA Advocacy Training:  I attended a late afternoon Advocacy Training seminar sponsored by the American Diabetes Association. I found it to be very empowering and in a moment of bravado, I signed up to be available for in-person office visits to my congressional representatives. I am a confident advocate when writing, but speaking and putting myself “out there” border on terrifying.

The ADA has a good app for advocacy and I suggest that you check it out. It provides information on national and state advocacy priorities and links to easily become involved in ADA advocacy. Search for “Diabetes Advocacy” in the app store.IMG_0298

Because Scott Johnson was the reason that I knew about this seminar, I can’t say that it was a surprise to run into him by the Diet Coke cooler. But it’s always a pleasure to see Scott.IMG_0295

Number #3: FDA and Dexcom G5:  I was pleased to receive an email from Bennet Dunlap of DPAC sharing news from yesterday’s FDA Advisory Committee meeting on Dexcom G5 labeling. The panel voted 8-2 to recommend approval of a G5 labeling change to allow insulin dosing without a confirmatory BG meter test. The FDA will have to make the final approval, but it is likely that the advisory committee’s recommendation will be accepted. This change should help justify Medicare coverage for CGM’s as well as expand the use of CGM to more patient populations.IMG_0932

That’s it for today. Have a good weekend!

 

Consistent Inconsistency

Laddie_Head SquareIt’s now Day 4 of Diabetes Blog Week and the homestretch is in sight. I am starting to fade a bit when it comes to daily writing and reading about diabetes. Fortunately I’ve read some great blogposts this week and am inspired to make it to the finish line. Today the subject is healthcare and our fearless DBW leader, Karen Graffeo of Bitter-Sweet™, has given us permission to get grouchy. Right now I have good doctors and good insurance. Not everyone else is as lucky.

Today’s Topic:  Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

Wow. I think that those of us with diabetes could write an encyclopedia on this topic. The thing that bothers me the most about the healthcare system in the United States is the consistent inconsistency of it.

New year ==> New Insurance plan ==> Used Humalog last year. Forced to switch to Novolog.

New job ==> Different insurance company ==> Current endocrinologist is now out-of-network.

Same year ==> Same insurance plan ==> Won’t cover my brand of pump anymore.

Next-door neighbors with Type 2 diabetes  ==> My insurance reimburses diabetes education ==> Yours doesn’t.

Next-door neighbors with same income ==> You work for a large corporation and pay $500/month for health insurance ==> I am self-employed and pay $1000/month for similar insurance.

An insurance company pays my dentist $75 for an office visit ==> I don’t have dental coverage and must pay $135 for the same visit.

I have my 65th birthday ==> When I was 64 I had full insurance coverage for a CGM ==> Now it is considered “precautionary” and not reimbursable.

I could go on and on but it would drive me crazy. What worries me most about our healthcare system is that it is going to get worse before it gets better:-(

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To read more posts on this topic, click here.

Message Monday

Laddie_Head SquareWelcome to the 7th year of Diabetes Blog Week. This is my 3rd time participating and I swore I wasn’t going to do it again this year. Why? Because I get totally burned out by writing blogposts every day and trying to read the posts of 100+ participants. Somehow I am incapable of staying low-key during the week and always overdo it. So why am I here? Because Diabetes Blog Week links me to voices of diabetes from all over the world. At the end of the week I will feel exhilarated after meeting new bloggers and catching up with those whom I already “know”. I’ll learn more about myself and my diabetes as I tackle the topic list. On Friday I will be proud that once again I have survived Diabetes Blog Week! As always, thanks to Karen Graffeo of Bitter-Sweet™ for organizing everything.

Today’s Topic:  Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog?

When I started my blog in 2013, I wrote:

“The DOC (Diabetes Online Community) has become a family to me…. I think there is room for my voice in the DOC and I hope that I can help and inspire others  in the way that I have been helped and inspired by others…. I hope to use my blog to chronicle my journey through life with diabetes. Many of my posts will be reflections on the last 36 years as well as my opinions on current issues.”Blah Blah Blah2_DBW

That is typical blah for mission statements and I could easily write the same words again today. The main change is that it’s now been almost 40 years of diabetes.

I wrote one sentence in my first blogpost that seemed innocent at the time. It has morphed into one of the main reasons I continue to blog.

“The medical system in the United States is changing and I really wonder what the next years will bring for those of us with diabetes.”

Talk about the understatement of the year. I predicted that the Affordable Care Act (ACA) would bring me lower premiums and worse coverage. Wrong! I still have good coverage for diabetes expenses, but my premiums have almost doubled and they were expensive to begin with. Many DOC friends have fared far worse with huge increases in premiums and deductibles along with difficulty obtaining needed supplies and medications. Insulin prices have soared and for each insurance company mandating Humalog, there is another one requiring Novolog. The recent UnitedHealthCare mandate for Medtronic pumps is symptomatic of a broken healthcare system that increasingly devalues patients and results in huge profits for insurance companies, pharmaceutical/durable medical companies, and middleman wholesalers.

I also mentioned Medicare in my first blogpost:

“And before I know it, I will be on Medicare with a new set of rules that will save me lots of money in some areas, but will try to dictate that I live with 3 test strips a day and throw away my CGM because it is not proven technology.”

I am now counting down the months until Medicare. I am proud of my gray hair and feel strongly that I would like Test Guess and Go to become an information and advocacy resource for seniors with Type 1 diabetes. CGM coverage is one of the most visible battles but it may be just the tip of the iceberg with programs like Competitive Bidding threatening choice and access to needed supplies.

In three years of blogging I have been learning how to advocate. I know that I am a better writer than speaker. I know that I prefer one-on-ones to larger advocacy forums, but I am trying to grow. Regardless of where my senior years take me, Type 1 diabetes will be there and there is no reason to fight that. I don’t know how long I will continue to blog, but I’m not ready to quit yet.

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To read other Diabetes Blog Week posts on this topic, click here.

Access Matters: My Statement for DPAC

Laddie_Head SquareIn order to amplify the voices of those of us who oppose the recent mandate by UnitedHealthCare to cover only Medtronic pumps, DPAC (Diabetes Patient Advocacy Coalition) is asking everyone affected by diabetes to share their story. Follow this link to help DPAC gather “stories to share publicly within the community and, perhaps more importantly, within the healthcare and legislative communities.” Your voice will help prove that #DiabetesAccessMatters and will advocate for #MyPumpChoice and #PatientsOverProfits.

I don’t know whether my experiences will help because my diabetes narrative is that of a “privileged patient” who has always had access to prescribed insulins, meters, pumps, and CGM’s. How do I prove that access and choice have made a difference?

My Story as Submitted to DPAC:

I have had Type 1 diabetes since 1976. When I was diagnosed there was no home blood glucose monitoring and I took 1 injection of insulin per day. My chances for a long healthy life were minimal and complications such as blindness, amputation, and kidney disease were seen as almost inevitable.

Today I am 64 years old. I have gray hair and am stiff from arthritis, but my eyes are fine. My body has bruises and rashes from pump and CGM sites, but I have no numbness in my feet and my kidney function is fine. I rarely have a day without lows requiring glucose tabs, but I have not needed my husband to fetch emergency orange juice since starting the Dexcom G4 in 2012. My lab tests are good and my cardiac function tests are excellent.

So what happened?AccessMatters

Hard work paid off. Lucky genes probably helped. But what is most important is that I had ACCESS.

ACCESS to medical professionals who learned through the Diabetes Control and Complications Trial (DCCT) that controlling blood sugar results in better health for people with Type 1 diabetes.

ACCESS to new and improved insulin products as they were brought to market.

ACCESS to the newest technologies which began with home BG meters in the early 1980’s and expanded to insulin pumps and continuous glucose monitors (CGM) in later years.

ACCESS to education about how to optimally manage my diabetes.

ACCESS to social support through the DOC (Diabetes Online Community).

Along with access, I had CHOICE.MyPumpChoice

When my internal medicine doctor was unqualified to prescribe a pump, I CHOSE to switch to an endocrinologist.

After experimenting to prove that the blood glucose monitor I was using was unreliable, I CHOSE to switch brands to a meter which provided more consistent results.

When my endocrinologist and I agreed that my diabetes could be better managed with an insulin pump as opposed to injections, I investigated my options and CHOSE the pump that I believed would give me the best results.

When my doctor prescribed a CGM to combat my hypo-unawareness and extreme lows, I CHOSE to give it a try.

After a few years of failure with the CGM brand that I selected, my doctor and I worked together and CHOSE the competing brand.

I am incredibly lucky to have always had good insurance. I have had access and I have had choice. Many years ago my insurance was provided as one of my husband’s work benefits. The cost to us was minimal. Today I pay huge insurance premiums, but I still have access to the medications and durable medical equipment (pump and CGM) that my endocrinologist and I choose.

An insurance company is in business to make money and does not have a license to practice medicine. Once I pay my premiums, access and choice should be in my hands and those of my medical team. The idea that UnitedHealthCare has the right to change its policies on insulin pumps mid-year and mid-contract is wrong. Big players in the game making deals to reduce competition and limit choice should not be allowed.

How do I prove that ACCESS and CHOICE have made a difference in my life with diabetes?

I look in the mirror.

UnitedHealthCare and Medtronic Diabetes: I Could be Mad

Laddie_Head SquareI could be mad at UnitedHealthCare.

I could be mad at Medtronic Diabetes.

I could be mad at a healthcare system that allows health insurance companies to practice medicine and mandate care decisions for their subscribers.

But mostly I am sad.

I am sad for everyone with diabetes. I am especially sad for those of us with Type 1Sad Emoji diabetes for whom improvements in technology have been life-changing. I am sad for everyone who has diabetes today and for those who will be diagnosed in the future.

In some ways the last five to ten years have been a golden age of diabetes care with the release of new insulins, new medications, innovative insulin pumps, and increasingly reliable CGM systems. We see parents able to monitor their child’s blood sugar while at school. We see artificial pancreas clinical trials where blood sugar levels are optimized and the mental burden of care is reduced. Encapsulated beta cell trials have allowed some patients with T1 diabetes to reduce or eliminate the need for insulin injections. The next five years could be even more impressive for the Type 1 market with the probable release of several artificial pancreas systems, the advent of smart insulin, and explosions in ways to monitor our data.

How can I be mad at UnitedHealthCare and Medtronic? They are doing what big companies do. They are trying to grow bigger, squash competition, and make money. They can talk about visions of patient-centric care, but ultimately their DNA drives them to base most of their decisions on the bottom line.

As patients in the United States, what are we supposed to wish for and whom should we blame? It is easy to lobby for national health insurance to eliminate huge profits earned by companies such as UnitedHealthcare. At the same time as a person with longterm Type 1 diabetes, there are few countries in the world where I would have access to an insulin pump and even fewer where a CGM would be funded. I can idealistically hate the idea of our dysfunctional for-profit healthcare system, but there is no doubt that I have benefited from it.

I currently use an Animas Vibe insulin pump and a Dexcom G5 CGM. Fortunately I do not have insurance through United Healthcare. As someone who will be on Medicare in less than a year, I have slowly been coming to terms with the idea that much of the future of diabetes tech will be denied to me. I wrote a blogpost in early April titled “Countdown to Medicare with Type 1 Diabetes: 12 Months” and shared my feelings:

“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.”

But what if the future doesn’t come? The scariest part of the UnitedHealthCare mandate for Medtronic products is the threat that no one with diabetes will receive these life-changing therapies because they will not come to be. Although I sometimes think that Medtronic is taken for granted as a workhorse and powerful player in the diabetes market, in my opinion the most cutting-edge tech devices in recent years have come from the smaller players: Dexcom, Tandem, Asante, and even back to the beloved-Cozmo insulin pump. Innovative medical breakthroughs are apt to be eliminated when choice and competition are trampled by the bigger and more financially-secure players.

As I tweeted during the DSMA TwitterChat on Wednesday night:

Tweet_R

I am not mad.

I am sad.

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For more information about the UnitedHealthCare agreement with Medtronic Diabetes, I suggest you start with Mike Hoskins’ article at Diabetes Mine. He provides links to other passionate blogposts and social media responses and outlines actions that we can take to have our voices heard.

Hashtags:  #DiabetesAccessMatters #MyPumpChoice #PatientsOverProfits #AccessMatters

Countdown to Medicare with Type 1 Diabetes: 11 Months / Options for Testing Supplies

Laddie_Head Square11 months from now I will be on Medicare. April 2017. My aim is to write a monthly blogpost about what I am learning as I get closer to that date. Last month I wrote a general overview of my Medicare thoughts. This month I want to talk about testing supplies and Medicare’s national mail-order program for diabetes testing supplies.

Background:  In July 2013 Medicare instituted a national mail-order program for diabetes testing supplies that requires all beneficiaries to use a Medicare-contracted supplier for home-delivery of testing supplies. (Note: this applies to original Medicare only and not to Advantage plans. Also note that it is possible to buy testing supplies locally instead of through the mail-order program.) Part of the Competitive Bidding Program (CBP), this program was launched in nine test markets in 2011. According to a 2012 Centers for Medicare & Medicaid Services (CMS) update report:

 “CMS real-time claims monitoring has found no disruption in access to needed supplies for Medicare beneficiaries. Moreover, there have been no negative health care consequences to beneficiaries as a result of competitive bidding.”

The Government Accountability Office (GAO) challenged the safety monitoring methods used by CMS and questioned whether beneficiaries were receiving supplies on time and whether adverse health outcomes were resulting from problems accessing testing supplies. Adding to the GAO analysis, the National Minority Quality Forum worked with leading endocrinologists to analyze the data and released an online report in March, 2016 followed by a print article in Diabetes Care, the professional journal of the American Diabetes Association. This analysis indicated that:

“the Competitive Bidding Program disrupted beneficiaries’ ability to access diabetes testing supplies, and this disruption was associated with an increase in mortality, higher hospitalization rates and inpatient costs.”

This article received a lot of attention in the diabetes online community and prompted an initiative by DPAC (Diabetes Patient Advocacy Coalition) urging Americans to contact their elected representatives to #SuspendBidding. Click here to learn more about DPAC’s analysis of the problem and to contact your representatives.

My Perspective:  Rather than stress about my ability to get high-quality testing supplies once I get to Medicare, I decided to contact some experts: people I know with Type 1 diabetes who are on Medicare. I communicated with eleven seniors by email, phone, and/or in person. Some live in Minnesota and others in Arizona.

In general each T1 senior is getting diabetes testing supplies on a timely basis and is able to get their brand-of-choice. Several people buy test strips at local Medicare-approved pharmacies while others purchase them through mail-order Medicare suppliers. Although their Medicare experiences are not without occasional glitches, most of my contacts are satisfied with their ability to obtain testing supplies through Medicare.

Some of the comments I received are:

“It is not as fretful as you may think although some resources are better than others. Type 2’s have a harder time. At the beginning of your Medicare enrollment there may be some stumbling blocks until the required documentation is submitted appropriately by each member of your health care team”

“I am getting all the supplies I need of my choice, excluding CGM.”

“Once I couldn’t get the test strips I use, but it was a temporary thing. They were not able to get them from the supplier…. I get my supplies in a timely matter.”

“I have been on Medicare (with a supplement) for the last 8 years. I haven’t had any trouble with getting pump supplies or strips. My doctor is very cooperative and prescribes what I need.”

“I have never had a problem getting my test strips.”

But all is not perfect. One friend was recently forced to change strip brands, but she was able to select another “name-brand” meter and strip. Another friend has continued to work past age 65 in order to continue receiving CGM coverage.

A few more comments:

“They limit me to 5/day because that’s all I have shown on my logs…. I don’t think my endo has been any help at all.”

“I haven’t had any trouble with Medicare, but I have read about many others who have had trouble.”

“I find the whole medical insurance business so confusing. I have stacks of documents that come in the mail that make no sense.”

Summary:  I am encouraged by the feedback I received from my Medicare T1 friends. At the same time I know that these seniors are a unique subset of Medicare beneficiaries with Type 1 diabetes. They are empowered, well-educated, and reasonably financially-secure. Many of them have had Type 1 for more than 50 years and are used to navigating the US healthcare system to fight for what they need.

I plan to enter Medicare with a stockpile of testing supplies and know that I will need to get my ducks in a row to have the transition go smoothly. I need to remember that there will be bumps in the road along with a definite learning curve. I understand that new rounds of competitive bidding will continue to take place and just because things are fine today doesn’t mean that they will be fine tomorrow.

If you are on Medicare, I’d be interested in hearing about your experiences obtaining testing supplies and any advice you might have navigating Medicare. I have a lot to learn for sure.

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

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….

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Please note that Medicare began reimbursing the Dexcom G5 continuous glucose monitor  in 2017. Most of my concerns in the Countdown to Medicare series are still relevant. But the details may have changed by the time you read this post.   Laddie 6/28/18

 

Meet the Hansons!

Laddie_Head SquareA couple of years ago I met Megan Hanson at a dinner meet-up for women living with diabetes. We became Facebook friends and I have been privileged to follow the exploits of her ever-busy family. Last year the Hanson’s T1 Awareness video released in support of JDRF was hugely popular and even shared on the Huffington Post by Riva Greenberg. You can watch the 2015 video as a part of Riva’s post or else click here.

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Meet the Hansons!

A family of six: Mom, Dad, and four boys.

A family overflowing with love and joy.

A household of constant motion, laughter, and chaotic fun.

A family whose smiles light up my Facebook news feed.

A family living with Type 1 diabetes.

Three times over.

Mom and 4-year old twins Leland and Lincoln.

A family who advocates and educates others about Type 1 diabetes.

A family who will be walking in the JDRF One Walk at the Mall of America on February 20, 2016 to help “Turn Type One into Type NONE!”

In mid-January the Hansons released their 2016 “day in the life” video showing what Leland and Lincoln deal with in a day of diabetes. It’s longer than last year’s video and we see that although diabetes does not rob this family of smiles and laughter, there are occasional tears. The twins clearly “know their stuff” as they explain the basics of Type 1 diabetes and show their expertise at testing BG. Mom and Dad are in the background helping out with the hard stuff and performing middle-of-the-night BG checks. Brothers, one older and one younger, scream cheers of support every step of the way.

If you would like to support Team Hanson’s JDRF walk, click here. Very importantly, remember that every time you support JDRF, you are helping children like Leland and Lincoln and families like the Hansons. Watch their amazing video and join all of us who dream of a world without Type 1 diabetes.