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Posts tagged ‘type 2 diabetes’

DBlogWeek 2017: The Cost of Chronic Illness.

Diabetes Blog Week prompt for Tuesday:  Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care?

Aaaaaaarrgggghhhhhh this post has me writing and erasing sentences left and right.  I’m not even sure where to start.  This whole topic frustrates me.  Best to jump right in:

I remember, when I was small and under my parents’ care, my parents had to battle with their insurance company to cover more than four blood glucose test strips per day for me.  Since becoming an adult, I’ve had good insurance where my deductible was $300, out of pocket max was $500, and all of my supplies were covered at 100% so long as I was “in network.”  I’ve had crappy insurance where my deductible was $5000, no out of pocket max, and my pump supplies were covered 80/20.  (Those two years were the most I’ve ever spent on care in my life.) I’ve never been without insurance because I was raised fearing a lapse in coverage.  When I graduated college, I had a job that started three days later so that I wouldn’t have a coverage gap.  I remember when Chris and I were first married, we struggled to find an insurance policy to cover the two of us in a way that we could afford while also providing decent coverage for my persistent medical needs.

Living without insurance coverage was always presented as a “DO NOT,” but as the years have gone on and greed, corruption, and the breakdown of the healthcare (wealthcare) system became dominant over caring for patients, I’ve seen how being insured can still break your finances apart.  Families struggle to make medical ends meet and oftentimes can’t, making awful decisions – if you can even call them that – between paying rent and buying medication.

I am not a conspiracy theorist.  But what the fuck, Pharma … why are you always raising prices on essential drugs?  Because you know we’re trapped?  Why did insulin cost like $45 per bottle when I was diagnosed but is now upwards of $280?  I can only understand so much R&D because after a while, it starts to read like GREED.

Reading articles like these give me such rage (with a side of panic):

Insulin price hikes tell us a lot about what’s wrong with drug pricing in America

Eli Lilly Raises Insulin Prices While ‘Supporting’ People With Diabetes

On Lilly’s unconscionable insulin price increase

Doubt what they say. Believe what they do.

Eli Lilly raised prices on 9 drugs last week

Patients Beg For Pricey Drugs On Facebook Black Market

And I see a dozen different advocacy groups working towards the same goals – improving access for people with diabetes – but they aren’t always working together, which is infuriating to watch.  (Also, Melissa Lee wrote a great note on Facebook about the word “access” – read here.)  I do not know the behind-the-scenes details of which org is talking to who and what funds what and who has opinions on what sort of things, mostly because I’ve been out of the loop for the better part of a year (something about an infant invading my home), but looking at the community from 10,000 feet, there are a lot of dots.  And they could use some connecting.  And to be totally honest, I have no idea how that will happen.

Check out these orgs/efforts/opportunities and see if anything leaps out at you.

Check out the T1International Diabetes Access Advocacy Toolkit

Join the Access Alliance

Join the Diabetes Patient Advocacy Coalition

Download the Diabetes Patient Advocacy Coalition app

Take action with the American Diabetes Organization

Support JDRF advocacy campaigns

Explore Beyond Type 1’s Focus on Access

International Diabetes Federation’s Advocacy resources

The 5Calls.org website is always awesome for policy action (not just healthcare)

Because here’s the thing:  our community is divided by a dozen different things but we are UNITED by our common circumstance:  diabetes.  By uniting and raising our voices with compassion and conviction, we can make the difference and become the change our community deserves.  The cost of chronic illness is staggering, but the price of staying silent will make matters worse.

… and how great is Diabetes Blog Week, serving as the opportunity you may have been waiting for to get loud.

 

“Don’t you all know each other?”

A few weeks ago, we were in Venice and I almost walked right into the canal because I saw a lady with an insulin pump on her waist and a CGM sensor on her arm, speaking Italian to the shopkeeper and casually wearing her pancreas on her hip.

The flurried rush of emotions – excitement, understanding, the urge to shout “one of us!” – flooded me.  I grabbed my husband’s arm and said, “Hey DID YOU SEE HER PUMP?!” and he was all, “No, where?” and I pointed my finger while trying to make it look like I was itching my nose.

And my daughter said, “Yeah mom, I saw her!  And her pump! Do you know her? Don’t you all know each other?”

(You know, I wish we did.)

And even though we don’t all know one another yet, we can contribute to the growth and collective power of our diabetes community by participating in Diabetes Blog Week.  Sign-up details are on Karen’s blog – this is the 8th year! – and topics will be provided throughout the week.  And if you’re not into running a blog, you’re welcome to guest post here on some of the topics, if you’d like.  (Email me!  kerri (at) sixuntilme  (dot) com. )  Also, you can shape-shift the topics to fit into 140 characters on Twitter, or through Instagram, or other social sharing platforms.  Don’t let the “blog” in blog week keep you from sharing your story.  All voices are welcomed!

Perspectives on Diabetes: Why Children with Diabetes Matters.

People ask me why this conference matters, why the organization matters, and it’s sometimes hard to sum up.  What’s so great about sitting in a room full of people with diabetes?  Isn’t it like surrounding yourself with a reminder of something that is a pain in the butt (diabetes)?  Doesn’t it suck to talk about diabetes all the time?

DUDE.  NO.  This is kind of the opposite.  Being around people who understand diabetes doesn’t breed a boatload of discussion about it.  Instead, I’m sitting at a lunch table with folks who know the ins and outs of diabetes, but we don’t shout out our blood sugar results or bolus amounts.  It’s not like that.  We’re talking about what our lives are like outside of diabetes, about the life we build that includes diabetes, not built around diabetes.

People with diabetes wear green bracelets, to both alert to potential emergency situations (you see a green bracelet in distress, think glucose tabs in a hurry) but the green also threads together the people who are playing host to diabetes.

A quick glance at someone’s wrist lets you know that they get it.

Sometimes, when days are kind of rough, I’ll put on a green bracelet to remind myself that I am not alone. Support from the community is as important as the insulin I take; both keep me healthy, and keep me going.

But it’s not just the green bracelets that make this community so powerful. Orange bracelets are given to folks who don’t have diabetes, but who remain touched by diabetes.  My daughter and my mother came to Friends for Life with me a few years ago, and they were also able to connect with their respective tribes, the orange braceleters. My mother, after decades of raising me without a vast diabetes support network, was immersed in a sea of parents who understood so much of what she’s experienced as my parent. And my daughter, her understanding of mom’s diabetes expanding with time, was able to hang out with other little kids who had parents with diabetes.

This kind of support, community … whatever you want to call it, it matters.  I mean, you’re here reading on a diabetes-centric blog, for crying out loud.  Clearly we, as a group, have a pull towards one another and benefit from connecting.  For me, knowing I’m not the only PWD (person with diabetes) on the planet makes diabetes easier to handle.  This is a hard thing to build studies around and quantify how it affects health outcomes, but taking my insulin is easier when my mental health receives care.  My A1C has been consistently steadier since engaging with the community.  My level of diabetes health literacy has grown by leaps and bounds.  And diabetes scares me less, on the whole, because I am surrounded by people who are in it with me.

Whole person health, remember?  Diabetes doesn’t exist in a damn vacuum.


The annual Friends for Life conference is coming up this July, and if you haven’t checked out the conference, now is the best time.  There are also other regional conferences (Anaheim in September, Falls Church this past April) that offer the same connection and community on a slightly smaller scale.

Full disclosure:  I’m a board member for T-1 Today, which is the parent non-profit organization for Children with Diabetes.  My bias includes that, and the fact that I haven’t produced any insulin for the last 30 years.  If you’re an organization interested in finding out more about how to make a tangible difference in the diabetes community, please connect with me.  And if you are interested in making a charitable donation to support the organization, click here.  And thank you!

SUM Related posts:

5 Worst Things to Consume If You Have Diabetes.

Today is World Health Day and the focus is on diabetes.  Every media outlet in the world is picking up on this health story and twisting it just so, highlighting misconceptions aplenty and feeding the stigma about diabetes.  Messages get muddled and broken down into clickbait headlines that sometimes hurt our community more than they educate.

What are the five worst things to consume if you have diabetes? HINT: This is not a list of foods.  

  1. Misconceptions. Don’t consume them.  There is a public perception about diabetes as a whole and about the individual types – don’t let society’s misinformed views shape your own.
  2. Other people’s misunderstandings. Don’t consume them.  Don’t let people’s ignorance about diabetes ruin your day.  Correct their information and move on.
  3. Misinformed messages from the media. Don’t consume them.  Address and correct articles that perpetuate stereotypes and misinformation. We’ll never be happy, as a community, with a public health campaign, but we can take steps to help shape it in a way that feels right.  If not us, who?
  4. Anger and hatred towards our community. Don’t consume it.  People get angry about diabetes and the people who have it are often the target of blame, shame, and disgust.  Don’t let anger infiltrate our community.  We’re better than that.
  5. Stigma. Don’t consume it.  Don’t swallow it and don’t let it define you.  Taking care of your health is nothing to be ashamed of, so wear your efforts towards good health with pride.


What do I wish people knew about diabetes?  This:  

There is more than one kind of diabetes.  This isn’t a knock on my type 2 and gestational diabetes friends, but definitely a knock on society’s perceptions at large.  People have one musty, old perception of what diabetes looks like, and it’s always someone older, heavier, and lazy.  Would they be surprised to meet our fit type 2 friends, or the 20 year old gestational PWD?  Or a “juvenile diabetic” who isn’t eight years old? Or any of our community friends? Diabetes doesn’t have “a look.”

Diabetes affects more than just the person playing host to it. I am the one wearing and insulin pump, a continuous glucose monitor, and actually feeling these blood sugar highs and lows.  But I’m not the only one affected by diabetes.  My parents had to care for me when I was young, acting as my pancreas.  My friends have been affected by my lows and highs while we’re hanging out, sometimes forced to jump the bar and accost the bartender for orange juice.  (True story.)  And my husband has taken on this disease as his own as best he can, making it such an integrated part of our life together that I don’t feel alone.  Diabetes isn’t just mine.  It belongs to everyone who cares about me.

Diabetes isn’t just a physiological disease.  Mental health matters when it comes to diabetes management. It’s not just a question of blood sugar levels and insulin supplementation.  It’s about managing the emotional output that comes as part of life with a chronic illness.  It’s about the guilt of complications.  The pressure to control an uncontrollable disease.  The hope that tomorrow will come without incident. I feel that the emotional aspects of diabetes need to be attended to with the same care and diligence as an A1C level.  Maybe more so, because life needs to be happy, whether it’s a short life or a very long one.

Diabetes isn’t easy.  We just make it look that way sometimes.  Some of the perceptions that the general public has is that diabetes is easy to handle.  “You just wear the pump, test your blood sugar, and watch your diet and you’ll be fine, right?”  Wrong.  You can do the exact same thing every day and still see varying diabetes outcomes. It’s never all figured out.  Diabetes is a daily dance of numbers and emotions and even though we, as a community, make it look easy sometimes, it sure isn’t.

No diabetes is the same. Even within a community of diabetics, there are still widely varying ways of treating diabetes and even more ways of dealing with the emotional aspects.  There’s no winning combination and no “right” way to deal with this disease.  Being on a pump means you use a pump to infuse your insulin – this doesn’t necessarily mean you are taking better care of yourself than the person who opts for injections.  Low-carb doesn’t work for everyone, and neither do certain medications.  What works for you may not work for everyone. It’s important to remember that this disease, like life, doesn’t have a predictable path, so there are plenty of “right’ ways to handle it.

Just because we don’t look sick doesn’t mean we don’t deserve a cure.  That statement sums it up for me.  We might make it look easy, but it isn’t.  There’s no rhyme or reason to this disease, and even with the best care and the best intentions, complications can sometimes still come calling.  And their effects are devastating.  Diabetes, of all kinds, deserves a cure.  No one asked for any of this.  We deserve better than society thinking that diabetes isn’t worth their attention.

We deserve, we fight for, and we advocate for a better life, better health outcomes, … we deserve a fighting chance for a cure.

Guest Post: Diabetes Isn’t Easy, But Acting on Policy Can Be.

This morning, Bennet Dunlap is taking over SUM because he has something to say.  Changing health policy has become a project of Bennet’s for personal reasons, and with the help of the diabetes community, he and others are aiming to make a difference.  Today he’s writing about the Diabetes Patient Advocacy Coalition and how it’s aiming to be the “easy button” for the DOC and policy.  

And because he used the phrase “rat bastard” more than twice in this guest post, I’m particular partial to it.

 *   *   *

Diabetes is not easy. It doesn’t fit well into life. Diabetes is chronic – a word that here means the rat bastard never goes away. Never going away doesn’t fit into a medical system designed for acute care, meaning a cute little health issue that gets cured.

Readers of Six Until Me already know diabetes is not cute or cured, doesn’t fit into life, and is the aforementioned rat bastard. So you are probably not shocked to know that diabetes doesn’t always fit into health policy either.

Health policy runs into diabetes at many levels. There are more than three dozen federal agencies that touch diabetes. State laws impact schools, diabetes education, and even infection protocols in hospitals and extended care facilities. All the people, in all those positions, have all the same mix of understanding and confusion about diabetes as the general public they represent. A few get it; most don’t and some are woefully misinformed.

I suggest that living well with diabetes is a model for good diabetes policy advocacy. We live better with the help of others. We have healthcare teams to help with the clinical aspects of care and help translate academic advances into those programs. We have communities to help with the equally important psychosocial aspects of staying engaged with the rat bastard, diabetes.

On the policy side, we have professional and academic groups that speak to the science of policy issues. There is a whole bowl of AlphaBits of these including ADA, JDRF, AACE, AADE, DTS, CDC, NMQF and more. I think that policy advocacy is most successful when health professionals and patients work together. A FasterCures white paper on advocacy, Back To Basics, as a catalyst for health policy change writes:

“The gold standard should be to have both scientific expertise and a group of patients who can speak both to the science AND the urgency needed to make change.”

Our job is urgency.

Change happens when officials hear the real needs of people with diabetes, particularly when we are their constituent. But if diabetes does not fit into life, learning the intricacy of politics certainly is one more unpleasant thing too many.

What we need, is an easy way to create diabetes policy urgency.

I got that, in another spoon full of AlphaBits; the Diabetes Patient Advocacy Coalition. But that doesn’t fit on a spoon so DPAC for short. It makes it easy to keep track of issues, opportunities, find your elected officials, and know those officials’ positions. DPAC does all that so you don’t have too.

Most importantly DPAC makes it easy to act.

Here is an example: We all know that CGM is a game changer in diabetes care. Medicare does not cover it. Many succeed in fitting diabetes into their lives with the help of CGM, and they lose it as a care tool when they age into Medicare. That is not right. One hundred and eighty-five members of the US House and thirty-seven senators agree. They have cosponsored a bill to cover CGM. We should thank the supporters and urge others to join.

DPAC makes that easy.

Click the logo, fill out your address, and the DPAC will look up your elected officials. It checks to see if they have already cosponsored the bill and drafts a note of thanks to supporters or an ask of those who have not yet joined as cosponsors, to do so. You can add your story to the message or just send the message along.

Easy.

I mentioned three dozen federal agencies earlier. There is a bill to have them work together. A generation ago a similar effort brought us DCCT and tight control. A new generation of drugs, devices, a software promises another opportunity to change diabetes care. DPAC has an easy button there, too.

Diabetes is chronic; that means we need to keep at it to be successful. We need to keep at policy too, or elected officials will think the rat bastard has gone away.

Diabetes isn’t easy but PDAC makes it so acting on policy can be.

  *   *   *

Bennet is a passionate advocate for better diabetes care.  He is the father of four, two of who live with type 1 diabetes. Like millions of Americans, Bennet tries to be successful with type 2 diabetes himself.  He has created a variety of social media projects including the advocacy campaign StripSafely, DrinkingWithDiabetes a resource for families sending type 1 students to college, The Diabetes Patient Advocacy Coalition and his blog Your Diabetes May Vary. Bennet is an integral member of the Spare a Rose / Save a Child community supporting the IDF’s Life for a Child program. Bennet has given patient perspectives in public views before the FDA’s Endocrine and Metabolic Drug Committee on diabetes medication. Recently he has been a consumer reviewer for both PCORI and CDMRP grants.
 
With a degree in finance from Lehigh University, Bennet pursued a career in commercial banking. Following the diagnosis of his children with type 1 his passion for advocacy grew and he earned a master’s in health communications from Boston University to serve better the diabetes community.

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