I cannot imagine my life without my daughter.
I cannot imagine my life without the insulin that keeps me alive so that I can hear her laughter.
And yet… there are children in the world who do not have access to the insulin that will keep them alive.
In parts of the world (some closer to the U.S. than you think), there is a problem getting insulin to children.
Lack of access to insulin remains the most common cause of death in a child with diabetes (Gale, 2006). The estimated life expectancy of a child who has just developed diabetes could be less than a year in some areas (Beran et al, 2005). Many die undiagnosed, others through lack of insulin or lack of expert care. In some countries, expert care is available but resources are limited and so early and serious complications frequently lead to death in young adulthood. – IDF
We know that insulin is expensive in the United States, but for some families in the world, the cost of insulin is more than a family will make in an entire year. And you know what can change that?
For the past few years, the Spare A Rose, Save A Child online campaign has helped to raise funds for the International Diabetes Federation (IDF)’s Life for a Child campaign.
Life for a Child began over a decade ago and gives donor funds directly to diabetes centers around the world, getting children insulin, test strip supplies, and care to help these children live… and laugh.
How Can You Help?
Valentine’s Day is coming.
Flowers are pretty. Chocolates are nice. Perfume smells lovely (Sometimes.)
But flowers wither. Chocolates get eaten. Perfume wafts away into the air.
You deserve more than that.
The cost of a single rose. Or a very expensive piece of chocolate. Or a few spritzes of perfume. (Or even that teddy bear that gets purchased at the gas station on the way home.) Five dollars gives a child with diabetes in an underdeveloped country a month of life.
Let those who love you know that you’ll take one less rose. One less piece of chocolate. Skip the spritz. You want them to give five dollars (or more) to the Spare A Rose, Save A Child campaign.
You can have them donate once or… they can remind you that you are loved throughout the year with a monthly gift to the program. You get a sweet acknowledgment and the knowledge that you are helping people all over the world hear a child laugh.
Want to get your office in on the action? Done. Easy-peasy-give-insulin-to-kids-squeezy.
Your donation is tax-deductible. (So, for those of you who are romantic AND financially savvy… you can say I love you and write it off. It’s still sexy.)
What About People YOU Love?
You love them more than life itself.
Click here to give life for a child.
The diabetes community has something in common besides malfunctioning pancreases*: our giving nature.
*I prefer pancrei, but Webster’s would probably laugh at the petition.
We do it all year round and in many ways: Spare A Rose, Save A Child; JDRF and ADA Walks, volunteering time and talent to projects like Nightscout (CGM in The Cloud) and Tidepool, sharing knowledge and much needed support through non-profits like Diabetes Hands Foundation and diaTribe (who is celebrating their First Anniversary as a non-profit!) and much more.
So, it seems strange to ask you to donate today, because you already do so much to help others in our community, but here I go, hat in hand (but a lovely chapeau it is, bedecked in feathers and a wide brim)…
Whether it is a few minutes or a few dollars, please consider helping these worthy causes today:
It costs you nothing, but the addition of your voice is priceless.
We have two days left to tell the FDA that patients should be involved in every discussion, at every level, when it comes to the devices we use to keep us healthy and safe. Go here, read the easy steps, and add your comments to the FDA docket. (It closes December 4th, so giddy up, cowboy.)
I’m truthfully astonished to see how far the diabetes community has come in the last year, rallying to ensure the FDA understands how important our opinions matter. They’ve been stellar at recognizing and working with us, but there are no resting on laurels, because while we know it and some forward-thinking individuals know it, not everyone does. Until there’s a cure, all we have is our voice. Give it today.
You’re Going To Shop, So Might As Well Give At The Same Time
Full disclosure: When I’m not being a rabble rouser or loving on my family, I’m the founder of The Diabetes Collective, Inc., which is a recognized 501(c)(3) non-profit organization, created to fund programs like The Diabetes UnConference. There are so many wonderful non-profits out there that focus on living well with diabetes, so why create one more? Because there wasn’t a program designed to bring all adults with diabetes together to share their thoughts and get support in a safe environment. In order to make that happen (and some other things that will be coming after the first Diabetes UnConference is in the bag), The Diabetes Collective, Inc. was founded.
Amazon has a program called AmazonSmile and you can select The Diabetes Collective as your charitable organization.
“The AmazonSmile Foundation will donate 0.5% of the purchase price from your eligible AmazonSmile purchases. The purchase price is the amount paid for the item minus any rebates and excluding shipping & handling, gift-wrapping fees, taxes, or service charges. From time to time, we may offer special, limited time promotions that increase the donation amount on one or more products or services or provide for additional donations to charitable organizations.”
There is NO additional cost to you. The prices on Amazon are the same as if you are shopping without the AmazonSmile selection.
Please consider helping this way by choosing The Diabetes Collective, Inc. as your non-profit organization and help support the scholarships we provide to bring people with diabetes together to have the discussions they can’t have with their doctors or family.
If You Got a Penny or Two to Share…
You can donate directly to The Diabetes Collective, Inc. by clicking on the button below or on this link. It will take you directly to a secure PayPal checkout.
This is a tax-deductible donation so you’ll get a tax receipt from The Diabetes Collective, Inc. for 2014. Any amount will help.
But I also want to direct you to another amazing opportunity that is near and dear to my heart: The Bionic Pancreas.
You can donate (and it’s tax -deductible) here:
There you have it. Three ways to give: no money, giving through shopping, and giving through tax donation. Do one, two, or all three.
Wait. Stop. There’s one more way to give.
You can share this post with your friends. Your family. Strangers on the street. Tell them about how important a role diabetes plays in your life (even though you don’t want it to…) and how they can help you and millions of other people. (And if you don’t follow this blog on Twitter or Facebook, please do! I’m funny on all sorts of social media avenues!)
So, give. Whether it’s your time, your shopping acumen, or with a financial gift. I adore you for even allowing me to put it out there.
Give what you can.
Do what you can.
And we are grateful.
No, this post is not about Vanilla Ice, but you can thank (or curse) me later for using his famous lyrics throughout.
“To the extreme I rock a mic like a vandal…”
I talked about it before, but on November 3rd, a monumental event occurred. With the strategic urging of the heads of diaTribe, an unprecedented meeting was scheduled between the FDA and people with diabetes. #DOCAsksFDA was streamed live, so that those in the diabetes community could listen to and watch those representing the diabetes community have an interesting discussion about what patients want the FDA to understand.
I wasn’t the only one who wanted online access to this meeting. About midway through the meeting, the FDA servers crashed. (Hmmm…. the #DOC strikes again?) While those in the room continued sharing the dialog via Twitter, it was frustrating to not hear the conversation as it was happening. And there was no one at the FDA recording this separate from Adobe Connect.
Except…. someone was recording. Thank heavens. diaTribe employees in the audience whipped out their iPhones and video recorded the remaining hour and a half and have put it up on YouTube.
The conversations that transpired must be seen to appreciate the raw emotion our patients showed as they answered questions. Take some time. Stop, watch their collaboration, and listen…
“…We are all in this together.” - Rebecca Killion (type 1 diabetes, 17 years)
Of course, if you don’t have time, diaTribe has done their standard (their standard is exemplary) job of picking out the pearls from this and you can read them here.
“Dance, Go rush the speaker that booms…”
By the way, if you haven’t entered the giveaway that diaTribe is having, dance on over and do so.
diaTribe is continuing the “diaTribe Gets Fit Giveaway” - giving away ten grand prizes: a fitness tracker of the winners’ choice between a Fitbit Flex or Jawbone Up (and cool bonus prizes!). They only do one giveaway like this each year, so seriously, go do it. Takes two seconds…
“Anything less than the best is a felony…”
I’m heading out to join other patients for the DiabetesMine Innovation Summit, happening this Friday. If you’re unfamiliar with what this is, I consider it to be the only place where patients, manufacturers, Pharma, investors, inventors, clinicians, and payers can have real conversations about the future of diabetes innovation. I’m so grateful for DiabetesMine for putting this together each year and that I’ll be attending for the second time as a Patient Voices Scholarship winner. (My travel, lodging, and some meals are paid for by the scholarship offered by DiabetesMine.)
This is, in all truth, my favorite summit I’ve ever attended. I learned so much last year, and more importantly, left inspired to be more involved with the diabetes community.
This year’s topic is Emerging Models for Improving Life with Diabetes: “Against the backdrop of the Affordable Healthcare Act, which programs have the biggest potential, and how can we address challenges to their success?” And boy, do I have a lot to say as a patient- and a lot to learn as a patient.
“Check out the hook while my DJ revolves it…”
For those of you who have made it this far into the post, let me share my latest story about my hook (a.k.a. my right hand with the finger that continues to paint me as a budget Captain Hook…). I had surgery on October 2nd, felt that something just wasn’t right, and then realized as the swelling from the surgery went down (which takes a while) around the incision site, that something else wasn’t right… I saw a black line in my palm.
One of the sutures wasn’t fully removed when the stitches were pulled out by his nurse a few weeks ago.
It explains why the inflammation wasn’t going away and why scar tissue was developing. I ended up having impromptu hand surgery in his office yesterday, where he pulled out almost a half-inch piece of surgical thread. And then, I got two more stitches to close up that incision. (Fortunately, these are superficial and I’ll take them out myself.)
And I confirmed that, yes, indeed, I do have a PIP flexion contracture and NOT diabetic cheiroarthropathy as he had previously diagnosed. In this case, I hate being right. My options are occupational therapy and a splinting regimen, but it will take time and some injections that are considered to be “white hot pain”.
I feel like I didn’t do enough to push the idea of the PIP flexion contracture at my last appointment and it’s set me back, because I could have done more to alleviate the problem and potentially cured it. (That being said, my surgeon did offer physical therapy and I declined, wanting to see if the swelling was causing the pain.) That’s sometimes the problem with being an ePatient; you know what the possible diagnoses could be, but you may still defer to the surgeon and then disregard treatment choices.
The finger will get better. I will be a better patient. Better. Stronger. Faster. Six Million Dollar Diabetic.
“Quick to the point, to the point, no faking…”
Open enrollment for the Healthcare.gov and some state marketplaces is happening right now in the United States and for the first time ever, we’ve decided to enroll through the marketplace.
John and I reviewed the high deductible plan we had this year and truth? It’s cheaper for us to play for a platinum plan with a low deductible than what we paid this year for premiums and out of pocket. I made some cringeworthy choices for my diabetes (eschewing some prescriptions, medical appointments, and supplies until I met a $4,000 deductible because we didn’t have enough money in our HSA account is something I never thought I would do in my life…)
I, for one, am grateful for the ACA. I know that I am paying through the nose to stay healthy. After I wrote the post about the bare minimum a Type 1 adult could pay for basic healthcare, a comment came in that floored me. Here it is:
Hold on. “I can’t afford it”. These statements need to be qualified and quantified. In some cases this might be true. But with Medicaid for low. no income you get help. For those working, maybe choose the cheapest cell phone plan and most basic cable TV and the lowest possible car payment. Forgo vacations and eating out. You know I gave up these “basic Luxuries” and came up with $4,900 in “savings” applied to my care. The article, like many sensationalizes a terrible burden or cost when taking all things into account is sometimes not there. I acknowledge there are many that cut outgoings to the bone, but too many think it is a right to enjoy their luxuries AND have money for health care for T1D or T2D. - Tony
I don’t think Tony gets what I was trying to say. So, here I go… no faking…
- We have the cheapest cell phone plan. We do not have basic cable… or any cable. (We use HD over air.) We don’t have a car payment, as both cars are paid off. (My car is from 2003 and I’ve sunk over $2k to keep it running this year.) We haven’t taken a “vacation” since before our daughter was born (3 1/2 years). Eating out? We’ve cut out eating out long before you suggested it. Special occasions like a birthday gets a nice dinner out. I cut coupons, shop sales, buy clothes at consignment stores.
- Wait. You mean I can’t have a “luxury” and have money for health care? That having this disease and wanting to be healthy shouldn’t be a right? If you have $4,900 to apply to your care, bully for you. For the rest of us, that $1,591 I quoted was for treatments available 30 years ago and did not take into account the thousands that can be accrued if something goes wrong… like trigger finger surgery. Even with insurance, I am now in debt.
- Sensationalize? No. No. No. If anything, I didn’t sensationalize enough.
(If you would like to comment on his post on my blog, feel free. This, however, if all I will say on his post, because my head and heart hurts thinking about how I’d like to respond.)
And now, you’d think I’d send you off by actually showing you “Ice Ice Baby”, right? Wrong. Here’s Adam Scott, explaining what it all means:
You are an adult with T1 diabetes living in the United States. You have no health insurance - or worse, health insurance with such a high deductible that everything you need is out of your own pocket. This is today’s reality for so many people.
Want to know how much having diabetes and paying out of pocket will cost? How little you can pay? Read on…
This is the bare minimum standard of care, which means I’m not trying to NOT use test strips or avoid tests or health care visits.
When I say “bare minimum”, it means that there are no insulin pumps, no continuous glucose monitors, no conveniences, no latest on the market medications, and forget the latest insulin analogues. The insulin you’ll be using is the same formulation that I started with in 1983 - Regular and NPH (except you get recombinant DNA and I got a mix of beef and pork).
You should take this as a “If I am to follow what the ADA says I need to do at the very least, this is how much it would cost me for my diabetes.”
This does NOT take into consideration if you have to see additional health care professionals or have additional tests if it’s been determined that you have complications.
I am using the American Diabetes Association’s Standards of Care 2014 as the guiding document.
Most of the items listed can be purchased at Wal-Mart. Why Wal-Mart? Because ReliOn items, sold at Wal-Mart, are the cheapest on the market. I can’t vouch for their accuracy, efficacy, or their overall comfort and convenience. With the exception of the ReliOn glucose tabs that I purchased in an emergency once, I’ve never used these items. But here goes…
The least expensive insulin that you can purchase in the United States is at Wal-Mart. Remember that these particular insulins are not the latest or fastest insulins on the market. You will need to work with your health care professional to create your dosage plan, because if you are switching from different insulins (Humalog, Novalog, or Apridra for fast-acting or Lantus, Levemir for slower-acting/basal insulins) your dosage, timing, and when these drugs peak will be completely different.
The ReliOn brand insulin is manufactured by NovoNordisk, just so you know.
That being said, once your have your dosage, let’s pretend calculate:
If you take a total of 30 units per day (hey, adjust for more or less, this is a hypothetical Type 1 adult weighing 60kg), you will take about 900 units per month. As there are 1,000 units per vial, you’ll need at a minimum 2 vials per month.
- $24.88 ReliOn®/Novolin® Human Insulin N
- $24.88 ReliOn®/Novolin® Human Insulin R
- $24.88 ReliOn®/Novolin® Human Insulin 70/30
Total cost per month: $49.76
Total cost per year: $597.12
- $12.58 ReliOn Insulin Syringes (100 syringes in each box)
If you use the ReliOn insulin, you’ll most likely take two shots per day (minimum, remember?), so that’s 60 syringes per month. You can only buy them a box at a time.
Total cost per month: $12.58
Total cost per year: $100.64 (8 boxes, for 720 syringes each year, hoping that every single one works properly)
Blood Glucose Monitoring
You need 1 meter. Here you go:
- $16.24 - Walmart.com ReliOn Prime Blood Glucose Monitoring System (One time purchase. Don’t lose it, forget it somewhere, or need more than one, right, because that never happens.)
Total cost (let’s just call it per year, OK?): $16.24
Now, this is where it begins to get tricky. You need strips and lancets.
According to the ADA, for Type 1s, self-monitoring of blood glucose (SMBG) is key to diabetes management. They recommend 6 - 8 times per day as a minimum of blood glucose testing. When you read the Standard of Care document, they state:
“…prior to meals and snacks, occasionally postprandially, at bedtime, prior to exercise, when they suspect low blood glucose, after treating low blood glucose until they are normal glycemic, and prior to critical tasks such as driving.”
That is waaayyyy more than 6 times per day, but I’m going with the bare minimum.
So, 6x/day = 180 strips per month. Wal-Mart sells their ReliOn strips in counts of 50, so you’ll need 4 boxes per month.
- $9.00 - Walmart.com ReliOn Blood Glucose Test Strips 50ct
Total cost per month: $36.00
Total cost per year: $432.00
Now, you have to have a lancing device to get that blood.
- $5.84 - Walmart.com ReliOn Lancing Device (with 10 lancets!) Again, here’s hoping you don’t lose it or need more than one per year.)
Total cost per year: $5.84
You are supposed to use a new, sterile lancet for each blood glucose check. (Ahem.) Following the guidelines, it would be 6 new lancets each day for a total of 180 lancets per month. Buy the bigger box and you’ll save a penny per lancet.
- $5.84 - Walmart.com ReliOn 30g Ultra Thin Lancets 210ct ($0.03 each)
- $3.94 Walmart.com ReliOn 33g Ultra Thin Lancets 100ct ($0.04 each)
Total cost per month: $5.84
Total cost per year: $64.24 ( you only have to buy 11 boxes if you buy the larger box each month).
You hope that you’ll never be sick, under stress, or have a blood glucose over 240 mg/dl, because then you could possibly have ketones. But you need to have the ketone strips on hand, just in case. These do expire, so at a minimum, you’ll need one vial of these per year.
- $6.64 - Walmart.com ReliOn Ketone Test Strips, 50 ct
Total Cost per year: $6.64
If you are following the guidelines, you’ll need to use an alcohol swab for every time you use a syringe or a lancet.
- $3.74 ReliOn Alcohol Swabs, 400ct
You’ll use a whopping 2,920 of these each year. Minimum.
Total Cost per year: $29.92
Hypoglycemia? According to Diabetes Care:
Individuals with type 1 diabetes average 43 symptomatic episodes annually; insulin-treated individuals… As for severe hypoglycemic episodes, patients with type 1 diabetes experience up to two episodes annually…The risk increases with a history of hypoglycemia and an increased number of years of insulin treatment.
So, figure on one hypo per week. (You and I both know there are more, but again, we’re bare boning this.)
Hypoglycemia treatment options? Well, you could use glucose tabs or gels; they are the most effective in treating hypoglycemia. Still need something, so you can purchase juice or candy that can treat hypoglycemic reactions for less, but won’t be as effective or as portable or convenient.
- $3.98 50 ct. ReliOn Glucose Tablets (with an average of 4 tablets for each episode, but you may have to buy something on the fly so this cost may be higher)
Total cost per month (average): $3.98
Total cost per year (average): $47.76 (not counting extra items purchased if you don’t care the glucose tabs with you at all times)
Standard of Care states:
Type 1s should have their A1C tested twice per year if you are under 7.0% and quarterly if not meeting goals. The least expensive option is… yes, you guessed it: Wal-Mart.
- $8.98 ReliOn A1c Test - must mail test to lab to get results.
Total Cost per year: $17.96 - $35.92
Influenza vaccine annually (remember, this is Standard of Care recommendations) You can try and get a free one at a health fair or county health department
Total Cost per year: free to $25.00, depending on where you go without insurance.
Now, often you’ll have to see a health care provider to get this test, but there are some places that you can walk in and get this done without insurance or a prescription. I chose Any Lab Test Now for pricing (obviously this can vary around the country).
Fasting lipid panel annually, regardless of history. If you’re on a statin, then more frequently.
Total Cost per year: $49.00 (minimum)
Microalbumin test to measure albumin excretion (levels will determine your kidney function)
Total Cost per year: $49.00 (minimum)
Health Care Visits
Total cost per year for a single non-specialist: $95 to $215 (depending on location, according to this 2014 article)
One visit (minimum) for a dilated comprehensive eye exam. (This cost referenced is for a standard eye exam. It may be more based on dilation.) Remember if the health care provider finds evidence of retinopathy, additional visits, treatment, and tests will be needed.
Total cost per year for an eye exam: $50 to $114 (depending on location, according to this website)
This is the bare minimum cost annually without insurance (or out of pocket if you have horrible insurance options, not counting the amount you are paying for premiums), if you are not eligible to use free services or patient assistance programs.
Remember The Ground Rules
This amount assumes you are not using an insulin pump, a CGM, any brand name products besides ReliOn, the latest analogues or medications, or using any resources that may cost extra. You are essentially using the same technology that I started with over 30 years ago when I became Type 1, except the blood glucose testing is less expensive and results are faster.
That amount assumes that you are eating a healthy diet (oh, wait… it costs more to eat healthy, so factor that in…).
That amount assumes you are without ANY complications from diabetes or have ANY comorbidities.
That amount assumes you do not take a statin or an ACE inhibitor (recommended by ADA for many patients).
That amount assumes you do not take ANY other medications - or gosh, need a Glucagon Low Blood Sugar Emergency Kit.
That amount assumes you do not have periodontal disease, heart disease, depression, hypothyroidism (which is the most common autoimmune disorder associated with T1 - up to 30% of us have it), kidney disease, neuropathy, frozen shoulder or trigger fingers, foot issues…
That amount assumes you will not be admitted to the ER, the hospital, need specialists (nephrologists, podiatrists, orthopedists, ophthalmologists, cardiologists, gastroenterologists) or have to take time off of work due to diabetes.
If you do need assistance, there are resources available for U.S. individuals with diabetes that meet certain criteria.
Are you getting what I’m saying here?
This is not a blueprint for how to manage your diabetes.
This is showing you the cheapest, but often substandard treatments, for diabetes. How many people with diabetes must make decisions that impact our life due to the cost of living with this disease? TOO MANY.
I haven’t even started on the emotional cost. The psychological cost. The cost on families, coworkers, employers, friends…
It’s not how little we can pay…
I’ve figured that out: $1561.36 per year, give or take thousands of dollars.
It’s about how much we can’t afford to lose, which is much, much more.
It’s an exciting time of year! It’s
football voting season. Congress seats will be up for grabs and we want to remind those currently in power that they can’t forget the millions of people with diabetes and their friends vote. And we want them to know what’s important.
You want your voice heard in Congress?
Then tell them to #Vote4DM.
There are three bills that are currently in play up on Capitol Hill:
S539/HR1074 - National Diabetes Clinical Care Commission Act
Did you know that there are 37 federal agencies that play some role in the prevention and treatment of diabetes? (Have you ever worked with 37 people in one group? Try 37 agencies!!!) These agencies aren’t always working together, resulting in miscommunication (or lack of communication), reinventing the wheel, and wasting of resources.
The National Diabetes Clinical Care Commission Act will coordinate diabetes efforts. The Commission will include federal agency representatives, patients and health care providers, and will use existing funds at no extra cost to taxpayers to do its work.
S945/HR1274 - Access to Quality Diabetes Education Acts
This bill will increase access to diabetes self-management training (DSMT) by designating credentialed diabetes educators as certified providers for purposes of outpatient DSMT services under Medicare Part B. It’s “budget neutral“, meaning that the cost of the outpatient services will be offset by the savings provided with the program.
S. 2689/HR5644 - Medicare CGM Access Act of 2014
Medicare does not currently cover CGM devices, leaving people over 65 with type 1 diabetes (T1D) without coverage for continuous glucose monitors. Did you know that right now, costs for a hypoglycemia inpatient admission average $17,564 per visit!?
Passage of the bill will facilitate Medicare coverage of CGMs, and help pave the way for the next generation of CGM-related technologies, such as artificial pancreas (AP) systems.
Here’s what you can do.
Participate in the two Tweet-Ins for #Vote4DM: a 24 hour Tweet-In beginning on 10/22 (Wednesday) at 8pm EST and then another 24 hour Tweet-In beginning on 10/29 at 8pm EST. (If you can’t make these times, you can still tweet these messages out. It’s just important that you tweet them!)
StripSafely‘s made it so incredibly easy for you to use the power of Twitter for good.
Let’s get a 100% #VOTE4DM from our Congressional representatives and vote diabetes out of office.
1. Find your representative in Congress easily by clicking on this link and entering your zip code. (Remember that name or keep that page open for your reference.)
2. Go to the StripSafely Twitter page and let the blitz begin. (Look! A football reference!)
- You will send three Tweets per person on the list: One for each of the bills currently on the Hill.
- We are either asking them to cosponsor the bill or thanking them for cosponsoring the bill.
- Tweet the Senate and House leadership and the Diabetes Caucus leadership, regardless of what state you live in.
- Tweet your state senator(s) and district representative.
3. Share the StripSafely Twitter page with anyone who has diabetes or cares about someone with diabetes. (That means share with everyone you know.) Ask them to tweet.
And that’s it. Mark the date and time in your calendar and help us raise awareness for these non-partisan bills that will help people with diabetes. Share this info with people via Facebook, Twitter, and emails. We would love to shake the Twitter tree and get Congress to see that we won’t be quiet anymore about keeping us safe!