Considering the Heart | Part 3 | My Story

I delayed finishing this blogpost because despite my research on cardiovascular disease, I felt quite ignorant about my specific risks. After recent lab work, a specialized CT scan, and a visit with my internist, I am comfortable that I am competent to share my story.

Laddie_Head SquareIn Part 1 and Part 2 of this series about cardiovascular disease (CVD), I mentioned my tendency to play the “Not Me” card and dismiss the possibility of heart disease. My rational self knows better and I am aware that statistics indicate that my risk is significant. To date I have never experienced cardiac symptoms nor been diagnosed with CVD.

The American Heart Association website indicates that cardiovascular risk is determined by a combination of uncontrollable and modifiable factors. I do not get a good grade on uncontrollable risks. I am a post-menopausal woman who has had Type 1 diabetes for almost 40 years. I have a family history of heart disease including a father who had a heart attack before age 55. I have the negative factor of long-term use of prescription-strength NSAIDs for my inflammatory arthritis.

At the same time all is not gloom and doom because I have many checkmarks in the “heart-smart” column of things that reduce CVD risk. I am not overweight and IConsidering the Heart exercise regularly. I have never smoked, I eat a reasonably good diet, and my A1c is well within target range. I sleep okay for the most part and am not burdened with depression or an overly stressful life.

My blood pressure is in target range for “normal people,” but I have flirted with being out of the recommended range for people with diabetes. I am currently on a  low dose of blood pressure medicine and have no problems with it. Because BP meds have been shown to provide kidney protection for people with diabetes, I figure that I am getting a double benefit from it.

Eight months ago I had an out-of-range cholesterol test for the first time ever. Because my lipid numbers have always been ideal and my HDL (“good” cholesterol) is insanely high, my internist was okay with the “wait and watch” philosophy before prescribing statins. I saw my endocrinologist a few months later and she strongly suggested I start a statin drug. The 2016 Standards of Care in Diabetes includes this recommendation:  “In all patients with diabetes aged ≥40 years, moderate-intensity statin treatment should be considered in addition to lifestyle therapy.”

In December I accepted a prescription for a low dose of a statin. I filled it, took the pills for a month, and quit. I BECAME A NONCOMPLIANT PATIENT. I quit because I wasn’t mentally ready to take a drug that I swore I would never take. I also wanted one more cholesterol test without medication to confirm the previous results. This spring after great results from a repeat cholesterol test and a coronary artery calcium scan ($100 out-of-pocket), my internist and I agreed that it was appropriate for me to refuse a statin drug at this time. (This blogpost is not about the statin controversy and I suggest that you do your homework on statins and work with your medical team to make the best decision for you.)

I sometimes worry that I have characteristics that will lead to suboptimal diagnosis and care in case of a cardiovascular event. This article by Carolyn Thomas of Heart Sisters describes why women often delay seeking medical care mid-heart attack and I realize that I could be such a woman. I know that I might be apt to dismiss symptoms as “nothing” or sit at home wondering if my symptoms are significant. I am definitely the personality who might drive herself to the ER with chest pains. Even worse as someone with T1 diabetes, I know that I am at risk for an asymptomatic heart attack. Symptoms of a stroke are probably more clear than those of a heart attack and I know that it is important to not delay treatment for those symptoms.

I’m now at a point that I am somewhat educated about cardiovascular disease and knowledgeable about my risk factors. I work hard to be an empowered patient and although I don’t always agree with my doctors, I listen to them. I do my best to eat well and live well. After that, there is not much that I can do except try not to get run over by a bus tomorrow….

Summary: I hope that my series on cardiovascular disease as related to Type 1 diabetes and being a woman has taught you something and inspired you to educate yourself. Some of my diabetes friends have already been diagnosed with CVD issues and the rest of us are “at risk”. None of us should live our lives in total fear of where statistics might lead us. At the same time we shouldn’t stick our heads in the sand and be stupid.

A lot of the data contained in my first two posts is gloomy. I think that it is important to remember the statistic from the EDIC study that intensive diabetes therapy can reduce cardiovascular events by 42%. As much as you may hate the monster that is diabetes, do your best to manage it. We’ll never be perfect, but maybe we can make a difference.

Please remember that I am not a medical professional. Although this post presents 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.

*****

Related Posts

Considering the Heart | Part 1 | Type 1 Diabetes

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

Diabetes Tips and Tricks in Photos

Laddie_Head SquareIt’s Day 5 of Diabetes Blog Week and we survived! There are no blue ribbons or trophies to be awarded today. Instead we can be satisfied with having touched base with old friends, creating new online friendships, and gaining new insights into diabetes. Not a bad payoff! Certainly there were a few laughs and tears along the way and I for one am exhausted. For the fifth time this week I thank Karen Graffeo of Bitter-Sweet™ for having created DBW 7 years ago and for continuing to inspire and organize the D-troops every year.

Today’s Topic:  Let’s round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There’s always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.) 

I am a little bummed that I’m not allowed to give dangerous medical advice today. Rather than get thrown off the DBW island, I will not share tips on calibrating your CGM while BASE jumping in the Grand Canyon. I will not divulge the rules of used-syringe Pin-the-Tail-on-the-Donkey. I will not confess that I can test my BG and do a correction bolus before the traffic light turns green. I won’t describe how one of my D-friends has extended the life of an infusion set for 28 days. Just know that it is related to poor health insurance and that she says it quits itching after 5 days.

No, I will not tell you stuff like that. Instead I will share a couple of Fitbit tricks along with a travel tip.

My most original trick is that I attach my Fitbit One to the tubing of my insulin pump. Both devices live in my pocket with the tubing running through a hole in the pocket to the infusion set. Since I have begun linking my Fitbit with the pump, I have neither forgotten to wear it nor sent it to Fitbit death in the washing machine. Please note that I played golf yesterday so I had a lot of steps for the photo!

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Another tip related to Fitbit is that if you use Diasend, you can link your Fitibit to that website. When you open the Compilation Report, you are able to see your step and calorie averages along with your pump, CGM, and meter data. I do not enter food data into Fitbit, so the calorie number in the photo below is meaningless.

Diasend Compilation with Fitbit_2

My final tip is that I use empty prescription medicine bottles for used test strips and sharps when I travel. I keep it in my combined cosmetic/D-supply bag. It helps ensure that grandchildren, hotel maid service personnel, etc. are protected from blood and gore contamination and don’t get stuck by anything. I used to use old test strip bottles, but they were too small and not see-through.

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That’s it’s for today!

*****

To read other blogposts on this topic, click here.

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:-(

*****

To read more posts on this topic, click here.

Language and Diabetes

Laddie_Head SquareToday is hump day and we are halfway through 2016 Diabetes Blog Week. DBW used to last for seven days and I am happy that it has been reduced to five days. Although the topics were handed out ahead of time this year, I wasn’t motivated organized enough to get a head start. By Friday I will be crying “Uncle!”  with sore typing fingers and a brain devoid of ideas. Despite my enjoyment of the international camaraderie of diabetes, I will be ready to get back to popcorn and cable TV. Once again, thanks to Karen Graffeo of Bitter-Sweet™ for abandoning her knitting and cat to run the DBW show.

Today’s Topic:  There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.

The problem with words, especially when writing on the Internet and not talking face-to-face, is that what one person hears might not be what the other person thinks she is saying. The hole gets deeper as one person criticizes, the other gets defensive, more words are exchanged, and other people chime in from the sidelines. World wars have been ignited over less.

I do my best to think about what I am writing. For the most part I stay out of arguments. Some people are adamant that right and wrong are polar opposites and easily distinguishable as black and white. I am comfortable living in a the world of gray where most issues are neither completely right nor completely wrong.

That being said, I do have one pet peeve.I am a Person

I hate being called a diabetic (noun). I hate being called diabetic (adjective). I hate being referred to as that old diabetic bag in Room 3. That hasn’t happened…yet.

It is a cumbersome phrase to write, but I am a person with diabetes.

I don’t buy diabetic socks because they are unnecessarily expensive. Socks don’t get diabetes anyway. I don’t buy diabetic foot creams or vitamins for diabetics. Rip-offs for sure. I do however own diabetic pants. These are LLBean cargo pants that have enough pockets to carry my pump, CGM receiver, phone, glucose tabs, Fitbit, and car keys. I revel in the tackiness of calling them diabetic pants and I own a boatload of these slacks. Some have been cropped and hemmed to be capris.

Many people are comfortable being called diabetic. Their decision, not mine. If I edit the writing of a friend or co-blogger, I will flag “diabetic” and suggest substituting “person with diabetes.” But life is too short to go ballistic when someone doesn’t phrase things the way I would.

Call me wishy-washy if you like. I am a person with diabetes who happens to wear diabetic pants.

***

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

Joslin Medalists: Rx for the Soul

Laddie_Head SquareWelcome to Day 2 of Diabetes Blog Week. I started writing today’s post by describing the mental baggage that comes along with diabetes. In a roundabout fashion, my post didn’t end up where I had planned to go. So I began again. I hope that a profile of the Joslin 50-year Medalists qualifies as a discussion of mental health and diabetes. As always, thanks to DBW organizer Karen Graffeo of Bitter-Sweet™ for her hard work harnessing the 2016 voices of diabetes.

Today’s Topic: We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk?

This week I have been revisiting articles and videos about the Joslin 50-year Medalists. Elliott P. Joslin, M.D. believed that proper self-care would lead to a healthier life for people with diabetes. Following his vision, the Joslin Diabetes Center began awarding medals in 1948 to people who had lived with diabetes for 25 years. In 1970 the program expanded to award 50-year bronze medals. Since then 4,000 people have received 50-year medals along with 65 recipients of 75-year medals.

In 2005 the Joslin Diabetes Center began the 50-year Medalist study to investigate why this group of people had managed to thrive despite longterm Type 1 diabetes. Surveys along with physical exams, genetic tests, and lab work found that over 40% of the medalists did not have serious eye disease, 39% were free of nerve damage, 52% did not have cardiovascular disease, and fewer than 15% had kidney disease. And amazingly, 66% of these T1’s still had measurable insulin production. What made them special?

It also emerged from this study that most of the Medalists were optimists. Multiple articles and videos highlight Medalists attributing some of their longterm success to positivity, a good attitude, and a sense of humor. Does that mean that they never had bad days and never got stuck under black clouds of diabetes burnout? I doubt it. In my opinion it  means that they persevered and lived what they considered a successful and happy life despite diabetes.

Some memorable quotes:

“Like so many of the other Medalists, my story is one of good attitude, good doctoring, and good parenting.”          -Amy Schneider *

“But I tell everybody the two miracle drugs that God gave me: insulin and a sense of humor.”          -Annette Richardson **

“The fun part of life just took on a different perspective.”          -Louise Jesserer *

“Attitude, especially a positive attitude is important. You can’t be perfect.”  Kathryn Ham *

“I feel that if it doesn’t work so well today, tomorrow is another day. We should get up and think it’s going to work better.”          -Judith Ball *

“If I can do that, you can do anything…. It’s all possible.”          -Joel Bernstein *

My favorite takeaway from the Joslin profiles of the Medalists is that “one of the most common attributes, apparently is that Medalists like to dance!”

I don’t think that there is a better image that I can leave with you today than visions of people with diabetes dancing.

Young, old, glass syringes, insulin pumps, urine tests, CGM’s

Dancing

People from all over the world

Dancing

Dancing with diabetes

Dancing to forget diabetes

Just dancing

Dancing with Diabetes

 

*These quotes are from the Joslin Medalist Stories videos.

**This quote is from Words of Wisdom from Joslin 50 Year Medalists, a 6/06/2011 video by Kerri Sparling-Six Until Me.

*****

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

To learn about the application process for a Joslin 25-year certificate or a 50-year medal, 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.

*****

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.

*****

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.