Showing posts with label advocacy. Show all posts
Showing posts with label advocacy. Show all posts

Getting Our Money's Worth


Diabetes Blog Week


It's Day 2 of Diabetes Blog Week! Today's topic is: 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?

I'm grateful that our family is able to secure what most in this country would consider 'good' health insurance through an employer and that we're able to afford what are still extraordinarily expensive premiums, deductibles and copays. There are so many people who are unable to afford care which would allow them to live...let alone live well...with diabetes. Having access to quality diabetes care is not, in this country, in this day and age, something to take for granted. Instead, both because it's not guaranteed and because we pay dearly for it is, for us, a precious resource which should be used wisely in lots of ways, including these:

We prepare well for, and take full advantage of visits to the endocrinologist. Our copay to visit a specialist is $50- no small price.  We choose our specialists carefully, and if we're not happy we don't go back, just like we wouldn't return to a restaurant that served a sub-par $50 meal. Fortunately, after some trial and error, we found a great endo years ago. In the days leading up to the appointment, we talk as a family about what problems we're hoping to get solutions to and what questions we need answered. Once we're there, we give the 20-30 minute conversation all of our energy and focus. We take notes, and when we get home we implement the suggestions.

We also choose and purchase our diabetes equipment carefully. We pay a 20-30% copay for pump and CGM supplies. So we do our homework there too, extensively researching options. Then we talk with the doctor to choose the best insulin delivery and glucose monitoring methods for my child's particular needs. Over the course of many years I have managed to stockpile some extra pump and CGM supplies in case there is a lapse in our insurance or in our ability to pay that 20-30% copay.

We find opportunities to save money on supplies when it's reasonable to do so. We recently had the choice whether to pay full price for Lantus to keep in the fridge- and hopefully never use- for pump failure, or to receive a different long-acting insulin for no copay at all. That was a no brainer. We chose last year to stick with the longer-lasting transmitters and sensors of the Dexcom G4 instead of upgrading to the G5 which would cost us more in maintenance supplies. On a much smaller scale, I stock up during juice box sales and buy out the Smarties post-Halloween.

Despite the alarming annual tally of medical costs I compile each year for the income tax file, we are among the fortunate ones. Those costs don't preclude our ability to pay for housing, groceries, or even annual family vacations. So when there are unneeded supplies in the closet, or a charitable organization to support, we try to help those who are unable to afford the costs of diabetes. We've donated test strips and meters to Insulin for Life. We participate in an annual JDRF walk. We share information on social media about local organizations willing to take and redistribute unexpired diabetes supplies. We write letters and make phone calls to government representatives, insurance companies, and medical companies.

We do what we can to use our resources wisely and to help and advocate for those who don't have adequate resources to use.

More Diabetes Blog Week posts on the cost of diabetes can be found by clicking here.




Advocacy


I've shared with you my first New Years plan: spending more time with my fellow 'diabetes people.'  The second plan is much less fun, but in my opinion, unavoidable. I plan to spend more time advocating for people with diabetes. Phone calls, emails, tweets and more appear to be a necessary evil for the coming year.

I started today, thanking my representatives who support the parts of the Affordable Care Act which are important to me, and contacting some who do not. The ACA is not a perfect law, but eliminating it without a reasoned replacement would be a setback not just for people with diabetes but for those with all kinds of chronic and expensive diagnoses. Repeal of the ACA will not only impact people who've been able to buy insurance because of it, but also the greater majority of us with employer-sponsored insurance who've seen new benefits and protections through the law. This article explains those parts of the law in greater detail, including coverage regardless of preexisting conditions, coverage for preventative care and the elimination of annual and lifetime maximums.

My daughter is at the age where she's considering career choices. The existence of protections for her as someone with a pre-existing condition and who has high annual healthcare costs is important to us. We'd rather she not have to choose a career, and a job within that career, based primarily on whether she can obtain quality health insurance and be assured that her coverage will never lapse.

Are you concerned too? Here's an easy way to get in touch with your representatives:

http://diabetespac.org/

I'm certain this is only the beginning of my advocacy this year. At the rate insurance companies and prescription benefit managers are picking and choosing what's covered, it's likely I'll be in touch with them. We're fortunate to be in a great school district, but small conversations still need to be had from time to time.  Other political issues may arise locally or nationally which I feel require my voice- not just for my own child's benefit but for that of the whole diabetes community and beyond.

Diabetes People

We were very fortunate to find a parent support group shortly after my daughter's diabetes diagnosis. People in that group were also involved with the local JDRF chapter and I got involved there too. Once we got our heads above water with the help and support of both of those organizations I found myself able to turn around and help others. I encouraged the next round of newly-diagnosed families at the support group meetings. I got involved in planning and running a local JDRF walk. In the three years after diagnosis, personal contact with other 'diabetes people' was a big part of my life.

Then, because of a lay-off and a subsequent job opportunity, we moved back to the area where I grew up. We continued to participate in JDRF walks, and I did help with walks at the elementary school, but my contact with our local chapter was minimal. There was not a parent support group in the area. We were fortunate to know a couple of nearby families with T1D and so had, and continue to have, an informal network of information and support. I found the diabetes online community, and there found both personal support and a way to be supportive of others by starting this blog. For a while that was enough.

Now, though, I'm feeling a pull.

I'm still incredibly grateful for those moms and dads I met during the first months after diagnosis. Having those conversations provided a framework for how we still live with diabetes today. There's nothing like sharing stories, laughs, information or tears with people who have faced the same challenges.

In lieu of New Years Resolutions, I tend to think of something I'd like give some extra energy to over the course of the year.  Some years it's practical, like learning new recipes or starting a vegetable garden. Some years it's more social, like sending thank-you notes for even the littlest of gestures. This year?

I'll be looking for ways to spend more time with other 'diabetes people.'


 

Hope



It's blue circle day. The symbol was adopted in 2007 by the United Nations to represent worldwide unity in the fight against diabetes. Progress has been made since World Diabetes Day's inception, including better technology, increased awareness, and more organizations at work to help people with diabetes. Those building blocks of progress give me hope.

I even catch myself thinking about the end-game for this whole diabetes thing. It's quite possible that within the thus-far elusive 10 year window my daughter will be able to go about her business with little to no concern about diabetes. The advent of a true artificial pancreas now seems inevitable. Smart insulin and other pharmaceutical advances will make life simpler and safer for people with all types of diabetes. There are an increasing number of paths towards biological cure therapies. There is a light at the end of the tunnel. I have hope for my child.

Yet for too many people that light is a mere glimmer, if they can see it at all. Parents are wondering how they'll afford the next vial of insulin. Children in third world countries are travelling hundreds of miles to diabetes clinics. Grandparents are choosing between food and prescriptions. Families are suffering physically and emotionally because they do not have access to even the most basic diabetes care: a knowledgeable physician, a glucometer with enough supplies, and the pharmaceuticals they need.

So for me the question becomes, what needs to happen so that all of us are really united in that blue circle of diabetes, so that all of us can have hope? I can't wrap my answer up in a tidy bow for you today, but I can tell you that there is no shortage of organizations at work on behalf of people with diabetes here in the US and around the world:

International Diabetes Federation

JDRF Advocacy

Diabetes Patient Advocacy Coalition

Diabetes Advocates

American Diabetes Association Advocacy


These organizations and many more (if I've left out one you feel passionately about, feel free to comment below) are finding ways to provide hope for those for whom diabetes is a hardship in ways many of us can only imagine. If World Diabetes Day Resolutions are a thing, then I resolve to find another way to be involved this year in advocating for the basic diabetes needs of all people with diabetes to be met. Everyone with diabetes deserves to have hope.





Not All Statistics Are Boring








I struggle every November to think of ways to use my personal social media accounts to raise awareness.   I've posted general diabetes facts.  I've posted symptom checklists.  I've shared bits of our story.  I've received very little reaction to any of those posts, and those who did 'like' or comment were almost always people whose lives were also touched by this disease.

Thanks to JDRF, this year is different.  The above infographic can be created by  going to this page on the JDRF website.  Type in a few dates and details and, voila: a personalized diabetes stats sheet. 

I posted this on Facebook on Tuesday and it's still generating conversation today. People are genuinely moved by these numbers.  They're big numbers, and somewhat alarming if you really look at them. These numbers invoke, in a unique way, both surprise and empathy.  She's had how many fingersticks and she never complains about it?  You've lost how many hours of sleep and you're still (usually) functional?  The people closest to us see some of it, but I imagine there's almost nobody who realizes how much sleep we lose or how often my kid has a sharp object pierce her skin.

Last November, I wrote about how awareness-raising within our small circles of friends can not only generate more personal support for us which, let's be honest, we could always use; but also how it can also create a ripple effect, raising awareness and advocacy on a larger scale.

This year I'm grateful to JDRF for providing me an extremely effective way to start several meaningful conversations about what life with diabetes is like.



I'd Rather Get a Mani-Pedi

Diabetes Blog Week
The Healthcare Experience - Thursday 5/19 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!


My daughter attended her 8th grade 'semiformal' dance last weekend.  As a treat, she and a few friends went after school the day before the dance to get  manicures and pedicures. She was there for an hour and half, had her feet and hands pampered, sat in a massage chair, ate a coffee flavored hard candy and came out feeling relaxed and good about herself.  The price was half that of the coinsurance we'll pay in a couple of weeks when we go to the endocrinologist, and that doesn't even factor in the cost of health insurance in general.

I realize that the endocrinologist has significantly more education, expertise and support staff than the women who work in the nail salon, but bear with me here. 

What if she'd arrived at the nail salon and there had been a dozen people in line ahead of her, forcing her to wait in an uncomfortable chair for an hour?  What if she sat down at the little table to have fingers done and after the seventh digit, the manicurist sent her home because she was out of time?  What if once her fingers were done she went over to the pedicure area and was told pedicures required a separate appointment time at this salon so that even though she thought she'd booked a combination package there was no way she could have one today?  What if once she'd chosen the perfect polish color to match her dress, she was told that color was not included in the price and that she'd have to purchase the entire bottle at an exorbitant fee in order to proceed? 

Are you catching my drift yet? The crux of my argument is this: if any of these scenarios happened at our local nail salon we'd go elsewhere and write a scathing Yelp review for good measure.  Yet in the healthcare marketplace we put up with so much.  Our choices are limited, and while we sometimes put up with issues at a mediocre medical practice in order to get good care from a provider we trust, we shouldn't have to.

Most of us are paying through the nose for diabetes care.  Shouldn't we get a friendly welcome? Shouldn't there be a comfortable chair (massage chair preferred but not required) during a short wait, and maybe a complimentary cup of tea or glass of water? Shouldn't we expect the visit to have a seamless flow from vitals to data download to face-to-face time with the doctor?  Shouldn't the provider look us in the eye and ask what diabetes issues we need to talk about?  Shouldn't our insurance cover the diabetes care and equipment we and our doctors believe to be most appropriate for our individual needs?  Shouldn't our face to face and phone conversations with diabetes care and supply providers leave us feeling like the customer is always right and always comes first?

It's a huge problem to which I wish I had a solution.  We've been proactive over the years in shopping around to find the best endocrinology practice we have access to based on our insurance and geography in any given era.  When it's possible, I advocate for access to what we need both on an individual level and on a larger scale.  Nevertheless, in annual copays alone, we're spending an extravagant vacation's worth of money each year for service we'd almost always rate poorly in the 'reviews' section on a given website, and which we'd often choose never to pay for again.  If we had a choice.

What do other people think about their healthcare experience?  Click here to find out!



Worried


This whole UnitedHealthcare/Medtronic thing has put me through a string of emotions this week.  Disbelief and anger batted leadoff.  Determination followed, with a string of advocacy actions which are still ongoing.  Sadness made an appearance along with despair.  Now, the more I think about it, the more worried I get.

I'm worried on a personal level, as a UHC customer, that my kid will lose coverage for the tools she uses all day every day to manage her diabetes.  Pediatric patients are currently exempt but there's no guarantee they always will be.  I've also heard she's likely to turn 18 sooner that I'd like, and then she'll be required to switch. Then what happens?  Do we fight for an exemption?  Do we (could we afford to?) pay to go out of network?  Do we bite the bullet and learn a whole new system and try to make it work for her?  Diabetes is hard enough without having to do any of these things.  Would her blood sugar control suffer as a result?  Even if eventually we learned a new system, it would take a while and the learning curve would inevitably impact her blood sugar numbers.

I'm worried that this is just the first of the surprises in store for us.  Why not make us use another brand of CGM?  Why should they allow us to go to a doctor across the border in another state when there's one just down the street who is, on paper, exactly the same?  Does she really need to test 8-10 times per day?  Surely not...5 or 6 strips per day should be plenty.  Lab work again so soon?  Nah- just get it done once a year no matter the results. 

I'm worried because this decision represents another big step in the elimination of healthcare choices for patients and their doctors.  UnitedHealthcare is a huge insurer.  They can't be the only one going down this road when it comes to durable medical equipment.  Companies have already been down this road for pharmacy benefits, physician choices and more. Wherever we turn for insurance our choices will become increasingly limited.  And for those without the means to go out of network or pay a higher copay for a different doctor, tier of drug, or medical product, choices are disappearing entirely.

I'm worried about the 'big brother' language in the information about this agreement.  “UnitedHealthcare and Medtronic are working together to better serve people with diabetes by combining their collective resources, data and expertise," an e-mail statement from United Healthcare's corporate communications spokeswoman, as quoted in a Diabetes Mine overview of the situation reads. "This will include assessing how the combination of advanced technologies and patient support programs can improve care plans for individuals using insulin pumps... we aspire to bring a value-based approach to diabetes care that tracks clinical outcomes for UnitedHealthcare members on insulin pumps and places greater focus on quality rather than the volume of care delivered." My insurance company wants to track my child's 'clinical outcomes' to improve her 'care plan?'  Maybe we don't need to go to the doctor at all then.  See also: privacy, numbers don't tell the whole story, I thought giving consent to be part of a study was an ethical mandate, and maybe if she could choose the best tools for her those outcomes would be better and we wouldn't have to improve her care plan.

And what about innovation?  I'm worried that if there's no competition for customers, because customers don't have a choice, companies won't invest in research and development.  Until Tuesday we were keeping our eye on Tandem.  We were interested in the pump and in any technology they might develop in conjunction with Dexcom.  We're not due for an upgrade anytime soon, so these were fleeting thoughts. But the speed at which so many companies seemed to be innovating made us very interested in seriously investigating, and talking with our endo about, a variety of  products when the time came.  Now it looks like we're stuck with Medtronic who, since we don't have a choice, can provide whatever products it chooses and innovate at whatever speed it chooses.

I'm worried, in what is now broadening out to a philosophical way, about the state of the healthcare system in our country.  How, in what's billed as the most technologically advanced nation in the world, are people stuck with no choice in the technology they can use?  How, in a free market economy, can we accept losing the freedom to choose our own products?  How, in a nation of checks and balances, have we gotten to the point where giant corporations have control over our personal health? 

I'm worried.


I was grateful last night to have
chosen this technology, when I was able to use the
meter remote to deliver a correction bolus
to my sleeping child from across the room.


Dear United Healthcare


Dear United Healthcare,

You have been our family's insurance provider for the past 10 years.  I have repeatedly sung your praises regarding the coverage you provide for my daughter's diabetes supplies.  Our coinsurance costs are minimal compared to what so many other people pay out of pocket.  We've had choices of insulin, glucometers, equipment companies and medical providers.  We've appreciated that. These choices have allowed my daughter to thrive and to manage her diabetes at the same time.

Today I learned that beginning this summer you will only contract with one insulin pump company.  It is not the company we've been getting insulin pumps from since my daughter was 2.  It is not the company we chose after exhaustive research with our health care providers.  It is not the pump the endocrinology team recommended because its insulin delivery format was different from others and therefore a better fit for the patient.  It is not the product we use because we find its features make diabetes as easy to manage as possible.  It's not the tool we have spent 12 years learning to use as a substitute for my daughter's pancreas.

Diabetes management is a unique process. Every person using a pump is using it differently.  People deliver different doses when they eat or correct high blood sugars.  People program different basal rates based on a whole host of physiological and personal factors.  People use pump features, many of which are very different in different brands of pumps, to tweak those doses and basal rates based on their very unique personal needs.  Changing access to features people use to manage their disease well will, logically, lead to them managing it less well.

I'm grateful to hear that this new rule will not (yet, at least) apply to pediatric patients.  I also understand that you will provide exceptions to the rule should a physician certify a particular pump as medically necessary.  Yet the reality is that most of your customers will no longer be able to choose the tool they are most comfortable using all day every day to keep themselves both alive and healthy.

I've always assumed that the good coverage you've given for diabetes care in the past came not from a place of benevolence but from an understanding that giving the patient the best tools to manage diabetes at home leads to fewer hospitalizations and fewer larger long-term health issues.  I hope this is not the first of other roadblocks you intend to put in the path of patients who are thriving with the tools they have.  With less effective tools people will, logically, manage diabetes less effectively. That seems like a big price to pay for short-term financial gain.  For the benefit of all of your customers with diabetes, please reconsider your agreement with Medtronic and the philosophy behind it.


Sincerely,

Your Previously Happy Customer


We love the tiny basal increments, the meter- remote feature,
the way the temp basal works, the customer service,
 that it's waterproof, and that we're so
 familiar with it now that we can use it in the dark.
  Please don't take it away.



You Don't Send Me Flowers Anymore


Rose Logo w give here


Two years ago my husband stopped sending me flowers for Valentine's Day. 

Our favorite florist has not gone out of business.  The magic is not gone.  We have not gotten a cat like my childhood one who eats the flowers and then throws them up all over the house. 

We just decided that the following is true:

Flowers die.  Children shouldn't. 

The Spare a Rose, Save a Child campaign asks us to donate the cost of one Valentine's Day rose ($5) to Life for a Child, which is part of the International Diabetes Federation.  Life for a child's mission is "Saving the lives of children in the developing world." According to their website, Life for a Child is currently helping 17,000 children and youth with diabetes in 46 countries.  Also from their website, the program aims to provide:

  • Sufficient insulin and syringes
  • Blood glucose monitoring equipment
  • Appropriate clinical care
  • HbA1c testing
  • Diabetes education
  • Technical support for health professionals 

  • Can you imagine being unable to access insulin for your child with diabetes?

    Can you imagine dosing insulin with no access to a glucometer or test strips?

    Can you imagine being handed insulin and syringes with no meaningful education on how to use them?

    Can you imagine seeing your child ill and suffering and subsequently die from undiagnosed diabetes?

    I can't quite imagine any of those scenarios, but I know that they're happening in at least 46 countries around the world.  And I'm certain that if there's anything I can do to help even one child have access to basic diabetes care, I need to do it.

    So once again, we'll spare a dozen roses their Valentine's Day fate. 

    Please join us, and save a child instead.




    The Benefits of Becoming Visible


    This year's JDRF walk had what we thought was a particularly cool new twist.  The walkers with diabetes were given the special blue shirts pictured below:

     
     
     
    Suddenly we were aware (there's that big November word again!) of all of the people around us who had diabetes.  People of all ages and from all walks of life were walking around in these blue t-shirts, instantly identifiable as PWDs (people with diabetes) to the world around them.  People in blue shirts were nodding and smiling at each other.  Parents pushing a stroller containing a toddler in a blue shirt had other parents of blue-shirted people coming up to them and offering support.  A blue shirt made the wearer the star of the show, if only for a couple of hours.
     
    There are some plusses to having an invisible illness- I've covered them here before.  But along the lines of these shirts and of JDRF's T1D looks like me campaign this November, there are some plusses to being visible once in a while too.  A big one is PWD's and those who love them finding each other for support. 
     
    Are there ways, even without the blue shirts, we can be more aware of and supportive of the people we know who are on this diabetes path with us?  Can we be more attuned to picking strangers with diabetes out of the crowd?  Even a smile and a nod go a long way towards not feeling alone.
     
     

    We Need to Talk


    If I ask a colleague to donate $10 to my walk for a disease she doesn't understand, she's unlikely to give.

    If the big debate in town is whether or not to save money by eliminating school nurses, and my neighbor thinks that nurses just give out band-aids and call parents of sick children, she'll vote differently than I would.

    If I tell the parents that my child knows everything she needs to know to be safe at the party, cross my fingers, and go home, they'll assume that what she's dealing with is no big deal.

    Earlier this week I shared my diabetes awareness month goal of opening up a bit more about diabetes during regular every-day kinds of conversation: awareness-raising on a very small scale. These conversations feel, at first pass, inconsequential in the grand scheme of things.  They seemingly pale in comparison to traveling to Capitol Hill to meet legislators or starting a foundation.  I think, though, that I've been underestimating their importance.

    In addition to the potential for more support for me, and for my family, those conversations have the potential for a big ripple effect.

    Someone who's heard my story about a scary low blood sugar incident is more likely to keep an extra eye on my child at their house.

    Someone who's heard our harrowing diagnosis story will be better prepared to support a friend or coworker whose relative is newly diagnosed.

    Someone who knows the amount of time and money it takes to keep just one child with diabetes alive will be more attuned to legislative issues related to health care and medical research.

    Someone who knows how very tired and occasionally anxious diabetes makes us will be more likely to buy that paper JDRF sneaker at Marshalls.

    If I'm really doing it right, someone who hears our story might even pass it along to a friend who will be more likely to do all of those things too.  And if every one of us whose lives are touched by diabetes were to share a story now and then about why it's a big deal, imagine the ripples we could create.  We need to talk.

    Awareness of the Need for Support


    When my neighbor's husband died suddenly a couple of weeks ago her driveway filled with cars.  The florist truck was on autopilot to her address.  People arrived carrying trays of food.  Her mailbox was full of cards.

    As I pulled in my driveway this morning after school drop-off, she was leaving her house alone, headed for a day of work.

    When my daughter was diagnosed with diabetes during Christmas week 2002, we were surrounded by support.  By the time we'd returned home from the hospital,  Santa and his helpers had filled our living room with toys.  There were cards and phone calls from afar.  Relatives and local friends brought us food and kept us company as we adjusted to this new and challenging way of life.

    When my daughter called from the nurses office because she was low, again, last Friday, nobody was around to offer a hug.

    My neighbor's grief has not gone away because three weeks have passed.  Similarly, our family's need for support has not gone away because nearly thirteen years have passed.  Both have become less visible, and less urgent.  But we'd be much better off not traveling this road alone.

    November is Diabetes Awareness Month. Grateful that raising awareness is not up to me alone, I intend to narrow my focus down to just a few avenues of awareness-raising.  One area I've struggled with over the years is being open with even our closest friends about what living with this disease is really, really like.

    Therefore, my personal goal for this November is to be just a little bit more candid about the frustrating, scary, and painful parts of having a child with diabetes.  Maybe just once when I meet up with a friend and she asks how I am, I'll go ahead and share that I was up half the night treating low blood sugars.  Or maybe I'll one-up a story of a cantankerous teenager with a description of what happened when I attempted to engage my child with a 300+ blood sugar in conversation yesterday afternoon.  Maybe, given the opportunity, I'll even share that there are aspects of having a kid with diabetes which terrify me.

    Friends and family are no longer at our door offering hugs and asking how they can help.  The major crisis has long passed.  We appear to be doing just fine: good grades, extracurricular activities, nice friends, weekend adventures.  But it's my goal this month to raise awareness among those who care most about us that it's not all rainbows and unicorns.  That we still need their support.


    In The Grand Scheme of Things

    Diabetes Blog Week




    Welcome to Diabetes Blog Week 2014!  Today's topic is 'Change the World.' Let's kick off Diabetes Blog WEek by talking about the diabetes causes and issues that really get us fired up.


    I've gotten involved in a variety of diabetes-related causes and issues over the years.  I've signed all kinds of petitions, written letters, shared concerns on facebook and twitter.  Our family participates in at least JDRF fundraiser 'for a cure' each year including occasionally volunteering at these events.  We have donated both money and supplies to other diabetes charities. Given the opportunity, I'll do whatever it takes to convince a parent of the importance of a 504 plan in conjunction with a good relationship with the administration and staff at school. At different times I feel 'fired up' about different issues.  But they all pale in comparison to what children with fewer resources than mine go through to live with diabetes.  

    We have a plastic drawer full of fairly accurate test strips.  We wish they were more accuarate.

    My daughter has an insulin pump, a continuous glucose monitoring system, several glucometers and a ketone meter.  We wish they'd all work together as an artificial pancreas.

    We have insulin in our refrigerator and if we run low, a pharmacy a mile away from our house.  We're annoyed when we forget to call in the refill.

    We drive to the endocrinologist's office three or four times per year where we receive excellent care from both the doctor and a full team of diabetes specialists.  The rush hour traffic on the drive home is frustrating.

    We sometimes have to push for better understanding or communication from school, but my daughter is safe and happy there with a full-time school nurse and informed staff.

    These day-to-day challanges of diabetes are real, but pale in comparison to what too many other children with diabetes live with each day.  Insulin For Life is an organization which provides diabetes supplies and care to children who otherwise would have none. None. Not strips which don't work as well as we'd like them to.  Not insulin they ran out of so they have to make a 6 a.m. run to CVS.  Not electronics they'd really like to replace with the newest model or the pink version.  Not doctors whose waiting rooms could really use free Wifi. None.  If there's a cause to rally around, basic care for children who have none at all seems to me the most important.

    Could our lives with diabetes be better?  Always.  But in the grand scheme of things, we really, really can't complain.


    Diabetes Art Day

    The photo was created over the weekend and the image uploaded in time for yesterday's event.

    We spent the rest of Monday shoveling snow.

    So here it is, better late than never, my daughter's contribution to Diabetes Art Day:

    THE CIRCLE OF DIABETES

    Things To Do For February




    Diabetes Art Day  is THIS MONDAY, February 3rd.

    Artists in my life have taught me that there is great value in expressing oneself through the visual arts.

    Though the finished product may not be museum quality, the experience of creating is the valuable part.  You'll use parts of your brain you may not ordinarily access.  You may be surprised where the process takes you.

    So I encourage you to take a few minutes this weekend, or on Monday, to create art.  It could be a complicated sculpture.  Maybe you'll create a multi-media collage.  Or it could be a simple drawing with pencil and paper.

    Create your art, photograph it, and share it on the Diabetes Art Day website.  Last year I made this little guy:



    Once you've created your art and posted it, don't forget to spend some time perusing other people's art. There's a children's gallery and an adult one.  The contributions range from whimsical to deeply emotional and everywhere in between.

    Secondly, I sent a link to my husband this morning about:


    Here, from their website, is the crux of the campaign:

    Lack of access to insulin is the most common cause of death for children with diabetes in many countries around the world. In fact, in some parts of the world, the estimated life expectancy of a child who has just developed diabetes could be less than a year. *

    This Valentine’s Day our community can help change that.

    Through the Spare a Rose, Save a Child campaign, we raise awareness and donations for Life for a Child, an International Diabetes Federation program which provides life-saving diabetes supplies, medication, and education that children in developing countries need to stay alive.

    Spare a Rose, Save a Child is simple: buy one less rose this Valentine’s Day and donate the value of that flower to children with diabetes. Your loved one at home still gets flowers and you both show some love to children around the world who need it.

    One rose, one month of life. A dozen roses, a year of life for a child with diabetes.

    Eleven roses would be eleven more than I usually get for Valentine's Day, and perhaps that's the case for you too. (We're more of a romantic dinner out couple, though I never turn down chocolate.) It matters not.  We can still honor the idea, which is that the $5 cost of one rose can provide a month's worth of insulin for a child.  Maybe you'll buy a less expensive box of chocolates, or a slightly more modest piece of jewelry.  Maybe you'll skip an appetizer at your romantic dinner out, or choose the wine which is on sale for your cozy dinner in.    

    Love comes in many forms.  We can express it romantically, per the Valentine's Day tradition.  But it's broader than that.  Sharing our art with the diabetes community is a loving act.  Giving up a bit of our Valentine's Day gift so that a child can have life-sustaining insulin is another.  

    I hope you'll enjoy these opportunities to share the love this February!

    World Diabetes Day 2013


    My daughter is excited about World Diabetes Day this year.   

    She made postcards similar to the one above to send to 5 people around the country.  

    She's wearing blue from head to toe (almost...she'd now like a pair of blue shoes).

    Her second-ever instagram post went up last night.  She posted an image reading 'wear blue tomorrow for world diabetes day!'  

    She scrolled through images tagged #WDD this morning, liking and sharing. She was excited to find so many and excited to post her own later this afternoon.

    She's intrigued by the idea of buildings lit in blue tonight and other unique events to raise awareness around the globe.

    She's planning to do the big blue test in gym.

    She likes that there's a day set aside to spread the word about diabetes and why we need a cure.

    I love that she wants to do all these things.  I love that she's not embarrassed to advocate for herself and the rest of the people in the world who live with diabetes.

    May we learn from her example and find a way to raise awareness today, particularly beyond those who are already well aware of the challenges diabetes brings.

    Sick Day Project




    Yesterday was a sick day to recover from a cold.  So Ruby and Rufus came out 
    to help us with a very important project:




    We put together our cards for the World Diabetes Day postcard exchange.

    The germs should die off in plenty of time to mail them.  Now if the glue would just dry in time too...




    Junior Diabetes


    I was waiting for the question.  The sneakers were up behind the counter. The cashier at Marshalls rang up my purchases. Then he looked up.  "Would you like to donate to the Junior Diabetes Foundation?" 

    As you may be aware, there's an ongoing discussion in the diabetes community about the name for the autoimmune form of diabetes.  Juvenile Diabetes was the original.  Type 1 is the current.  Some think the third time will be a charm.

    Despite the push to use 'type 1,' or an even newer moniker, 'juvenile' lingers. One reason is that it's featured in the original name of the disease's primary foundation.  JDRF began as the Juvenile Diabetes Research Foundation.  According to the people running our local walk kick-off event this summer, JDRF has chosen to shorten its official name to the acronym, but not to change it completely.  The concern is that brand recognition is imperative for their fundraising efforts. An explanation of their re-branding can be found on the JDRF website.

    Their decision is understandable in some ways, but problematic in others.  When people see an acronym, they assume it stands for the organization's name.  JDRF has redrawn their logo to make the J and D resemble T1D.  Next to their logo are the words, 'Improving lives. Curing Type 1 Diabetes.'  Yet verbally, that doesn't come across.  Selling sneakers at the check-out is very much a verbal transaction. The cashier was stuck with an acronym: JDRF.  I imagine a training packet comes with the sneakers, with sales pitches to use.  I also imagine that if staff are actually trained, not much of it sticks.

    So I was asked to donate to the Junior Diabetes Foundation.  It could have been worse.  Diabetes made it in there, which defined the essential purpose of the fundraising.  Anyone with a connection to the disease would probably have accurately translated the question.

    I suppose I could have said something like, "It's actually Type 1 Diabetes.  The J used to stand for Juvenile, and the organization used to be called the Juvenile Diabetes Research Foundation but they changed their name to just an acronym because the disease was renamed and because people of all ages live with it."  I'm guessing his eyes would have glazed over pretty quickly.

    So I simply donated and said,  "Absolutely.  And thank you for asking.  My daughter has diabetes and JDRF's research means a lot to us."


    Thankful


    Living with diabetes in Suburbia, USA is not without difficulty. We get frustrated dealing with:
    • Meter problems and insurance issues
    • Site changes gone bad
    • Worrying about children out without us
    • Lost sleep
    • The challenge of guessing carbs
    • Medical professionals who don't live up to our expectations
    • The Pharmacy
    • Nutrition labels
    • Whether a bionic pancreas will ever come on the market
    And that's just a list of things I've blogged about this spring.

    These issues are legitimate and challenging to me, and to many of you.  Yet some days it's important to be reminded how much harder it could be.

    This video about children living with diabetes in Ethiopia puts it all in perspective.  Please take a few minutes to watch it.

    After viewing this, I'm incredibly thankful because:
    • My child did not have to move in with other relatives in order to access care for her diabetes
    • We don't have to dig a hole in the ground in which to store our insulin
    • We can get in our car and drive to our diabetes clinic
    • We own at least 4 glucometers
    • We have a refrigerator and pantry full of food
    • Our doctor's office has a waiting room, allowing us to get many minutes of uninterrupted care
    • My child has access to multiple types of diabetes technology
    • We are equipped to educate ourselves in the best ways to care for her
    • There is more than one pediatric endocrinologist in my country.
    Of course we must continue to fight the good fight, counting every carb, urging research and demanding the care our insurance should provide.  Yet there's value in keeping in mind that the resources we have are immeasurably far beyond those depicted in this video.  The difference borders on incomprehensible.

    ***This video was produced by Novo Nordisk to document their charitable efforts. If this video left you curious about how to help kids in similar situation, check out the International Diabetes Foundation's Life For a Child program, which also provides much needed supplies and education to children in developing countries.



    We The Undersigned...

    Diabetes Blog Week


    Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) - get creative!! What are you trying to change and what have you experienced that makes you want this change?

    We, the undersigned, petition medical professionals to tell us the truth about the level of discomfort we can anticipate when undergoing tests and procedures.

    We particularly request the elimination of the following two phrases:

    1. 'You'll just feel a little pinch.' 

    2. 'This might be a little uncomfortable.' 

    Even a savvy three year old can tell you 'just a little pinch' means 'I'm about to stab you with something long and sharp.'  Please give up the phrase.  Nobody believes you.

    'This might be a little uncomfortable' is used inaccurately by medical professionals in multiple settings.  Examples of the use of this vast understatement include but are not limited to:

    An orthopedist resetting a broken arm.

    An orthodontist taking impressions for braces.

    A pediatrician taking a sample from the back of the throat for a strep test.

    An eye doctor putting in drops for dilation.

    We, the undersigned, demand less deception and more respect for our intelligence and common sense.