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.
My car runs on unleaded gas. It goes from point A to point B (and sometimes to point H when I don’t follow the GPS correctly) and it has an engine. I understand the basics of internal combustion and in my more adventurous youth, I even changed my spark plugs and oil on my own. (I think
every woman every person should know how to do that.)
I drive it with the knowledge that I don’t know everything about how a car works. I watch Top Gear (the U.K. version, of course), but that does not make me a gear head. There’s a lot I don’t understand about cars.
I’m not expected to know; that’s why expert mechanics exist. If it makes a funny noise or squeals as I brake, I take it to someone who can diagnose the issue and hopefully fix it without putting me into hock. Even people who change my car’s oil may not understand how the engine works or what that funny noise is.
Replace car with diabetes and other appropriate phrases related to a disease. (Heck, if you want to go for broke, you can replace car with any major illness.)
Now re-read those first two paragraphs.
I Don’t Expect You To Know…
I don’t expect you to know how diabetes works (or doesn’t work). There’s a lot of moving parts to the intricate dance we do each day to get from Point A to Point B (and we sometimes end up at Point H without any idea of how we got there). I don’t expect you to know how I feel when my blood sugar is crashing to the floor or soaring towards the ceiling; my symptoms and side effects are unique (although many share the same symptoms and side effects). I don’t expect anyone to know what the diagnosis signs are or how they can help me, and millions of other people, live well.
All of this to say: Let’s stop berating others if they don’t know about diabetes, especially those in the medical field. Sounds crazy, right?
“What do you mean the ER nurse didn’t know what a CGM is?”
“The optometrist asked you what your blood sugar was this morning?”
“The doctor wanted to take your insulin pump off in the hospital?”
“The LPN told you that she has diabetes, too, when she saw your medical alert bracelet, but that hers wasn’t severe?”
“The nurse said that they’d give you insulin just when you eat, but no basal insulin at all?”
We are the experts…
We are the experts. We live with this disease 24/7/365 ad infinitum. Most of the medical world hasn’t had more than a mention of diabetes in a class for their certification or degree (with the exception being CDEs and endocrinologists). Are you amazed at that?
This is the curriculum for a BS degree in Nursing at NYU. There isn’t a single “Diabetes” class in their four year program, either as requirements or electives. Would it shock you to learn that, according to a Diabetes Care journal article in 1990, 20% of nursing faculty surveyed said that their students had 0 to 8 hours of clinical experience with diabetes patients during their education? (And most of those patients were over the age of 65?)
When we encounter someone (in the medical field or in public) who doesn’t understand what diabetes is or has a misperception of what we do every day, we have a choice. We can express incredulity at their lack of knowledge and become defensive about our disease, or… we can educate them.
“The ER nurse didn’t know what a CGM is?”
Nope, because when she went to school, CGMs didn’t exist. And really, the majority of people with Type 1 diabetes don’t use (or don’t have access to use) a continuous glucose monitor. So, those who do use them are a subset of a subset of a large group of people with diabetes. A simple explanation of what a CGM does and how it helps you prevent hypoglycemic or hyperglycemic episodes can go a long way to not only educate that ER nurse, but perhaps create an ally or future advocate in the ER for diabetes.
“The optometrist asked you what your blood sugar was this morning?”
Yep, because even if you put that you’re Type 1 on your intake form, they don’t know how often you check. You can simply smile, explain that while you checked this morning, you’ve also checked twice (or six times!) since then. You can talk about the difference between Type 1 and Type 2 and that all people with diabetes can get the same eye complications. (Retinopathy and macular edema doesn’t discriminate between types.)
“The doctor wanted to take off your insulin pump in the hospital?”
If you’re wearing an insulin pump, you may know more about diabetes than that doctor. You can begin a dialog as to why the insulin pump needs to be removed. They may not understand the technology - and it’s up to you to explain that your pump supplies a basal rate and boluses when needed. However, if you’re in the hospital because of DKA or a severe hypoglycemic episode, the pump may be the issue. Have the conversation - a two-way conversation - and ask that your endocrinologist or a hospital endocrinologist be brought in to consult.
(Side note: That all being said, if you encounter an endo or a CDE who doesn’t understand the basic mechanics of diabetes, please run, do not walk, out of that office.)
When people say things that make you angry because it’s clear that they don’t understand diabetes, take a breath and remind yourself that you didn’t know much (if at all) about this disease before you were diagnosed. It’s frustrating when you encounter someone in the medical field who may not understand, especially because they are dealing with you. They just haven’t been taught. Yet.
We can’t expect anyone to know, but we can expect everyone to learn. And if we want everyone to learn, then it’s up to us to be knowledgeable about diabetes and the devices that we use. We should be able to explain in simple terms and invite questions. We should be able to ask our own questions and be our own advocate. We should be able to smile and talk about the differences between types of diabetes and explain that there are more that the types have in common than separate them.
We won’t change the world overnight, but imagine if you could calmly explain the disease to someone and walk away knowing that they’re a little more knowledgeable about diabetes? Or give them websites so that they can learn more?
Sounds crazy, right?
Let’s be crazy.
Better drugs and devices mean better treatments.
Better treatments mean longer, healthier lives.
Longer, healthier lives means more time with the people you love.
Clinical trials = love.
Clinicaltrials.gov is the first place to look to see if there is a clinical trial you can participate in that happens to be in your area.
Want a little nudge?
Click on this link for all open clinical trials in the United States with “diabetes” as the keyword.
Click on this link for all open clinical trials in the United States with “Type 1 diabetes” as the keyword. (There are currently 428 studies available.)
You can modify your search and pick your state (heck, if you are out of the U.S., there are still studies you can do). Some areas have more opportunities than others, but this is your chance to get involved and help all people with diabetes. I’ve done clinical trials and am always on the lookout to do more. Why?
Clinical trials = love.
Our very good friends have a child with cancer. This child was being treated with high-dose chemotherapy and developed a life-threatening liver issue. The only treatment that gave them an option was through a clinical trial. That clinical trial saved his life. In participating in the trial, his results will help pave the way for better treatment options for others. He didn’t have a choice (thankfully the clinical trial was available), but we have a choice right now to help others.
Clinicaltrials.gov is a crappy website. Yep. There. I said it. It’s not user-friendly, but it does provide you with all of the information you need. And you can look at it anytime because they’re constantly updating it. For ALL disease states, not just diabetes.
Want to Participate?
Once you’ve found a study that you might want to participate in, you’ll need to check the “inclusion criteria,” which will tell you whether you not you’re a candidate. Some are specifically by age range, some may exclude those who have had illnesses, and others must have individuals in a certain weight range or HbA1C range. If you meet the criteria, you can contact the study coordinator and get more information.
Some trials will provide not only the medication or device during the trial, but medical team appointments and travel/monetary compensation. You can be altruistic AND help yourself at the same time!
If you see your medical team at a research center, ask them if there are any clinical studies that you can participate in. (You never know!)
Also, if you happen to be in the Chicago area and meet the criteria, here’s something that you can do to help…
Research Study for Young Adults with Type 1 Diabetes at University of Illinois Chicago
If you are 18 to 30 years old with Type 1 Diabetes, using an insulin pump, not working Evening, Night or Rotating Shifts and willing to participate in a research study then you may be able to help!
Research activities will include: 1 hour visit for health history and physical, wearing monitors to measure activity & glucose and an overnight sleep study.
Research Related activities will occur at: UIC College of Nursing (845 South Damen Street, Chicago, IL 60612) and UIC Sleep Science Center (2242 West Harrison Street, Suite 104, Chicago, IL 60612)
Participants will be compensated for time and travel.
When you have a very expensive chronic illness (hint: diabetes is a very expensive chronic illness), it pays to be prepared when it comes to doing your taxes and squeezing every dime out of your medical deduction. You need to begin the hunt for your expenses - and the receipts for those expenses.
Topic 502 of the IRS is all about Medical and Dental Expenses. We all need to know about this topic. Here’s the deal if you itemize your expenses on your 1040:
For years beginning after December 31, 2012, you may deduct only the amount of your total medical expenses that exceed 10% of your adjusted gross income or 7.5% if you or your spouse is 65 or older. The 7.5% limitation is a temporary exemption starting January 1, 2021 to December 31, 2020 for individuals age 65 and older and their spouses.
It Pays To Itemize
It pays to itemize. Seriously. Plain and simple: we spend a lot of our diabetes care, but we don’t think about all of the items. (And a lot of the time, we don’t keep the receipts…)
I’m telling you this: start now. Even if you didn’t keep the receipts from last year, start collecting. If you’re high tech, scan them in somewhere. Take a picture of your receipts and put them in a file on your computer. Heck, get a folder and put it next to your keys and put any receipts that can be included as medical/dental expenses into it. Find a system that works for you. But start now.
I AM NOT A TAX PROFESSIONAL. Oh, please. I have a BA degree and a MSc. degree, neither of which is in accounting. You know (hopefully) by now how much I do not like math. I use a bolus calculator for a reason. I have wonderful friends who are CPAs. Do not look to me for tax advice. Do not look to me as the shining pillar of how to do taxes. I am many things, but I am not a tax professional nor am I perfect. (I am The Perfect D, but…)
I’m not giving you the entire list of what are considered acceptable deductible medical expenses. If you want the whole list, you can get it from the IRS website.
Here are the ground rules for what you can deduct:
- You can only include the medical expenses you paid during the year and you can only use the expenses once on the return.
- If you got reimbursed for any medical expenses, you must reduce the expense by the amount you were reimbursed.
For instance: You paid a doctor $120 for an appointment in May of 2014, sent the receipt into your insurance, and they sent you a check for $100 in December of 2014. You can then only claim $20 for this 2014 expense on your taxes, because you paid only $20 to see the doctor.
What You Can Deduct If You Have Diabetes
Deductible diabetes medical expenses may include (but are not limited) to:
Your payments to your healthcare team: physicians, CDEs, nutritionists, dietitians, psychiatrists, psychologists, endocrinologists, nephrologists, podiatrists, cardiologists, physical therapists, chiropractors, and “non-traditional medical practitioners”, including acupuncture for smoking cessation, and massage therapists when used for a medical condition.
Your prescriptions/insulin. Anything that you have a prescription for, you can list as a medical expense. And… even if you don’t have a prescription for insulin, it’s still a medical expense that is covered. That includes your pump and all supplies. Your insulin pens and syringes and cartridges. If it helps you get the drug into your body, it’s a medical expense that can be deducted.
Your meter and blood glucose testing supplies. (These are diagnostic devices and therefore, covered. Same goes for your CGM and sensors. Ketone test strips (urine or blood).
Your eyeglasses or contact lenses. If you have contact lenses, you can deduct the cost of the enzyme cleaners and daily cleaning solutions. Don’t forget to include your eye exam, even if it was a refraction/non-dilated exam. That’s included.
Dental treatments at the dentist’s office, including cleanings and fillings. (You cannot expense floss, toothbrushes, or toothpaste.)
Your guide dog expenses, including grooming and food and vet fees.
Your lab fees. Your ambulance fees or ER fees or hospital stay. All of it is covered. They’ll send you receipts. You’ll weep at seeing how much they charge.
Your lodging for medical care (up to $50 per person per night) (meals not included), if:
- The lodging is primarily for and essential to medical care.
- The medical care is provided by a doctor in a licensed hospital or in a medical care facility related to, or the equivalent of, a licensed hospital.
- The lodging is not lavish or extravagant under the circumstances.
- There is no significant element of personal pleasure, recreation, or vacation in the travel away from home.
Your cost of special dietary considerations (i.e. celiac disease - and you must click on that link and read this post from one of my favorite bloggers) or costs for participation in a weight-loss program after an obesity diagnosis) when prescribed by a doctor. Don’t try to deduct health club dues. Nope.
Your admission/registration costs AND travel expenses for a chronically ill person or spouse or a parent of a chronically ill kid to attend a medical conference to learn about new medical treatments. (You can’t deduct meals or lodging while attending the conference.) Hello? Friends for Life? AADE or ADA? Ahem. Deductible medical expenses. Holla.
Your Electronic Health Records cost to keep all your data in one place. Also known as a “medical information plan” or a “personal electronic health record.”
Payments for transportation primarily for and essential to medical care that qualify as medical expenses, such as payments of the actual fare for a taxi, bus, train, ambulance, or for medical transportation by personal car, the amount of your actual out-of-pocket expenses such as for gas and oil, or the amount of the standard mileage rate for medical expenses, plus the cost of tolls and parking fees.
Some of your health insurance premiums. I’m not going to get into this one, as it’s a minefield of what you can and cannot deduct. You need to look at the IRS website on this particular subset.
What You Can’t Deduct
One of the things that I wish could be covered is hypoglycemia recovery supplies (i.e. glucose tabs, juice, etc.). I’m doing everything that I can to keep that cost to a minimum, but really… we all probably spend far too much on that, and it’s not reimbursable. (Not unless you have a prescription written by your doctor for “juice”…)
You can’t deduct the cost of the cell phone plans and minutes calling your insurance company to argue over what is covered and what isn’t.
You can’t medically deduct the cost of your Internet service plan for the time you spend getting peer to peer support online from the DOC.
You can’t deduct the over-the-counter salves and moisturizers to keep our pretty diabetic feet from cracking or drying out.
Hopefully I’ve triggered something in your brain that says: “I can deduct that?! Booya!” Start preparing now for the 2014 tax season. (I’m quite aware that U.S. taxes are not due until April 15th, but don’t wait until the 15th to think about all the items that you can add together for your medical expense deductions… you’ll get overwhelmed and you’ll inevitably miss something.)
Happy deduction hunting!
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.