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 are18 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 & glucoseandan 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.
Death, taxes… diabetes. We’re all certain that until there is a cure, we’ve definitely got diabetes and have to pay our taxes (at least in the United States). Don’t we already bleed enough?
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, 2013 to December 31, 2016 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 medical supplies. Yeah, you’re thinking, of course. But medical supplies include: alcohol swabs, IV Prep 3000, Band-Aids, etc.
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.”
Your transportation costs to and from medical appointments/hospitals/medical centers. Don’t forget tolls, parking, gas, oil… Straight from the IRS:
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.)
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.
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.
“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.
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.
However, this post is about how much it could cost an adult with Type 1 diabetes if they used the technology and medications that are currently out on the market (and thought of as “the latest and greatest”) and paid out of pocket with no insurance. Research on this topic has shown me that: 1) prices can fluctuate wildly, so it pays to shop around and 2) there is a very big gap (financially, medically, and technologically) between the bare minimum and “surviving” and actually utilizing the tools and latest technology that is out there.
These prices are accurate on the websites I have referenced for December 1, 2014. They may change, they may add shipping, they may not offer the services, technology, or drugs on their website after this is posted. These prices are not a guarantee. They are to be used as a reference.
The listing of prices/websites on this post does not mean that I endorse the company or product or service.
I have not listed all the products available on the market for people with Type 1 diabetes. I have listed major ones to give you an idea of major manufacturers’ costs for the products that are available for general public viewing.
I did not call any companies and ask for pricing. Why? Because I believe that we, the diabetes community, should be able to really know how much something costs without having to go through hoops and customer service/sales representatives. Device prices should be listed on a company’s website, knowing that insurance pricing will be different. (We should be able to know how much a drug would cost without insurance, too.)
Some of the items are only dispensed with a prescription.
Yes, I know that some people with Type 1 do not use an insulin pump. In fact, only 30% of Type 1s use a pump for insulin delivery. Some are happy and do well with MDIs/pen needles. The cost of pen needles are comparable to using a syringe, so you can refer to this post if you want to do your own calculations. As I say, my blog, my words…
I used averages. That means that some pump therapies may cost more or less than the average.
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. You might be able to get by on one vial a month, but this doesn’t factor in correction boluses that might need to be raged to bring down a high blood sugar or a heavy carb meal. So…. two vials per month. If you’re on a pump, it’s two vials of fast acting. (Don’t forget that you’ll need that back up prescription for long-acting insulin if your pump malfunctions…)
If you aren’t on an insulin pump, T1s must use a long-acting insulin in conjunction with their fast acting. This hypothetical (hopefully not hypoglycemic) T1 would use one vial of fast-acting and one vial of long-acting insulin per month.
(So, for those of you keeping a tally for comparison, the total cost per year for insulin using a pump is $4,844.16 and for MDI, it’s $5,428.56.)
You know that some of these prices may not be the price you actually pay if you have no insurance. You call the manufacturer and explain that you will be paying out of pocket and ask what the “cash pay price” would be and if they have a financing program. (Some companies offer this; others do not.) But these prices are what’s shown on websites where you can purchase them….so ta-da.)
Most pumps are under warranty for four years. Some have upgrade programs. Others have a “trade your old pump from another company and we’ll give you a discount…) Do your homework before committing to a pump. Please. Some will let you test drive. Others have a return in 30 days policy.
(I would have added the Asante Snap, but there are no places online to get an actual price. I got estimates from blogs and news outlets that say $700ish, but without a definitive click, I can’t in good faith include it.)
Got pumps? Then you need cartridges. Can’t have one without the other (except if you’re talking the Omnipod, because the pods act as the cartridge and the insertion set.). Cartridges (or reservoirs, if you are Medtronic) are needed to hold that expensive insulin you purchased.
Omnipod = $0.00 because the pod acts as cartridge and insertion set. See below.
Insertion device for your Medtronic infusion sets = $26.20
Serter devices for your Medtronic sensors = $25.00/$14.70 (depending on the type of sensor you use)
Some people change their cartridges once per week, while others change every three days. So, you could use 4 per month or 10 per month.
Average Total Cost per month: $41.39
Average Total cost per year (9 boxes): $372.51
Average Total cost per year (12 boxes): $496.68
Those pumps and cartridges aren’t enough to get the insulin into your body. You need insertion sets (again, unless you use Omnipod, which are tubeless and incorporate the cannula directly into the pod).
Most people change their insertion set every 3 days. (You should. I don’t judge. Some people change it more frequently, due to inflammatory reactions or the dreaded occlusion.) So, you’ll go through one box per month… if not more.
Most people have a preference of the type of insertion type/tubing length they use. 90º or 30/45º angles, short tubing or long tubing, 9 or 6 mm cannula, metal or plastic… so I’m giving you a few choices. And again, it pays to shop around. Sometimes the manufacturer of the pump is not the cheapest place to get supplies (which confuses me to no end…).
(Remember that you need all three of these items to get your Dexcom to work properly. Start up can be expensive. In addition, the new Dexcom transmitter warranty is only good for 6 months and you will most likely need to purchase two each year.)
Initial/Replacement Cost of Transmitter & Receiver:$1797.00
(This is an add-on device that caregivers/loved ones can use to view the graph/numbers on the receiver in another room.)
The Medtronic insulin pumps use integrated technology on their Revel and 530G to show the continuous glucose monitor graphs/numbers, so you don’t need a “receiver” if you are using these pumps. You can purchase a receiver to use the Sof-Sensor sensors, but… why? (And I couldn’t find a place to purchase with a price on a stand-alone Medtronic receiver.) The sensors cost are per month, as the Enlites last longer than the Sof-sensors.
mySentry Outpost (this allows you to see data from the Medtronic pump/sensor in another room) = $500.00
Blood Glucose Monitors/Test Strips
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.”
8x/day minimum = 240 strips per month minimum, so 250 (because that’s easy to purchase in boxes of 50). So, that’s what we are going with, although I know that some people with diabetes use more – and less – than that. We are not going with the bare minimum.
Here’s where it pays to shop around…
Wal-Mart is NOT always the least expensive when it comes to purchasing blood glucose monitors and blood glucose test strips – not by a long shot. Of course, prices always vary given the day, the website, the weather…. you get the drift. SHOP AROUND. (Click the link to be forwarded directly to the website that had the price listed.)
And don’t forget that there are certain meter companies that have “special savings programs“, even for those who have insurance!
Wireless communication to Medtronic devices enables fast and easy bolus dosing and continuous glucose monitoring calibration
• Built-in USB cable has pass-through feature to allows for easy downloading to Medtronic’s convenient online CareLink® Personal software
Some people with diabetes on intensive management plans (those who are on pumps, microbolusing with flex pens, and/or CGMs are considered intensive management therapies) often see an endocrinologist and other specialists. You might need to include these in your team:
These specialist costs are higher than just seeing a regular general practitioner. Some by hundreds of dollars. The tests that may be prescribed can cost thousands of dollars out of pocket (say the word “nuclear stress test” and shudder when they tell you what it costs).
For reference, I see a retinal specialist for a dilated eye exam follow up every six months: $335.00 without insurance. My annual cardiologist visit is $430.00 without insurance for the (literally) five minutes I talk with him, including the pleasantries. One orthopedic surgeon office visit was $295 while the second opinion office visit with another surgeon was $180. As with everything else, shopping around if you have no insurance, especially when it’s diabetes related, is necessary.
Then there are the additional medications that might be needed: statins, blood pressure medications, medications for neuropathy, kidney disease, etc. These are too numerous to mention (and quantify), but you know that these are additional costs. Most people with diabetes wouldn’t be taking these medications if they didn’t have diabetes.
In a previous post, I mentioned the costs for treating mild hypoglycemia, for lancets and alcohol swabs, for the little things that all add up. The purchase of a juice/glucose-heavy item at a convenience store because you are low is a cost, but rarely factored in. Parking at hospitals for appointments. Tolls. Wear and tear on a vehicle as you travel to see various physicians to stay healthy. Batteries for the gear that isn’t rechargeable.
So, if you are truly calculating the costs of the latest supplies, technology, and treatments, there are items that you don’t even think about… the small ticket items that leech money from your pockets. They can add hundreds of dollars to the existing cost.
Let’s do some math.
If I am a T1 adult with no insurance who uses Humalog in a new Animas pump and a new CGM Dexcom, checking my blood glucose with a One Touch Verio IQ meter, it could be:
If you have already purchased a pump and a Dexcom, the out of pocket costs would be:
If I am a T1 adult with no insurance who uses Apidra in a new Omnipod and a new CGM Dexcom, checking my blood glucose with an Accu-Check Nano meter, it could be:
If you have already purchased a pump and a Dexcom, the out of pocket costs would be:
If I am a T1 adult with no insurance who uses Novolog in a new Medtronic (not 530G) pump and Sof-Sensor CGM, checking my blood glucose with a Bayer Next meter, it could be:
(The price would be greater with the 530G pump and the Enlite CGM sensors.)
If you have already purchased a Medtronic pump with CGM integration, the out of pocket costs would be:
That’s not counting the physicians (multiple visits), the labs, the other tests that you might need, the glucagon, the back up long-acting insulin, the small items, etc.
That’s just for the technology, supplies, and insulin analog.
Are You Getting What I’m Saying Here?
Without insurance, it is unlikely that you have thousands of dollars under a mattress for this type of intensive management. Even with insurance, many of these items can be cost-prohibitive, with deductibles to be met each year and percentages paid out each month to durable medical equipment companies and pharmacies.
This is not meant to shame medical device manufacturers and pharmaceutical companies. I’ve said before that they are not charities; they’re businesses and they can choose to set their prices and work with insurance companies for discounting.
Who loses in this scenario are those who want the technology but do not have an insurance company adept at bargaining or adept at meeting customer (that’s the subscriber) needs. Or those who don’t have insurance at all and fall into the gap of making too much to qualify for assistance programs but not enough to pay out of pocket for these items.
When someone asks a person with diabetes if it’s a hard disease to live with, they’re often asking about the physical aspects of the disease. Very few people outside of the community understand the financial burden many families face if they want what is the BEST technology and treatment for the person with diabetes.
Until there is a cure (be it biological or otherwise), this is the financial cost of living well with diabetes. Insurance companies can blunt some of the cost through their collective bargaining agreements, but we are still paying through premiums and deductibles and, in some scenarios, an inability to choose the medications or technology that they want, because of contracts.
There is no grand “THE END” to this post. For many people with diabetes, this is the reckoning that we do in our heads, wondering if we spend less now, will we pay more later? The answer is almost always… yes, but if we cannot even afford what the best treatments for diabetes on the market, how can we live long enough to get to that “later“?
I have no solutions. This is more of an academic exercise to see if what the statistics touted by the government on how much a person with diabetes pays for care was correct. It’s not.
People with diagnosed diabetes incur average medical expenditures of about $13,700 per year, of which about $7,900 is attributed to diabetes. People with diagnosed diabetes, on average, have medical expenditures approximately 2.3 times higher than what expenditures would be in the absence of diabetes. – NIH
We pay much more if we want excellent care. What can be done? Beyond a cure? I don’t know. Do you?
Over the weekend, I had the unmitigated pleasure of wandering through the de Young Museum in San Francisco.
Most of my time spent in places of curated beauty is one of breathless anticipation, rounding corners to discover new pieces of art that stirs up emotions deserving to be felt in raw form. I have my favorite genres and periods and tend to gravitate towards those galleries, but sometimes, as I wander through a room on my way to get to what I want to see, I find what I need to see.
Edmund Charles Tarbell’s The Blue Veil.
As I stopped to admire the piece for the colors and her captured solitary moment, I noticed the placard next to it held more than just the name of the artist and who donated it. It was this…
I have no idea who Jonah Copi is, but I’m grateful to him.
My diabetes community is my blue veil.
“I give her clarity
in a state of confusion.
I give her guidance
in a time of fogginess.
I am not only her veil
but her friend and protector.”
Sometimes we forget that we have a blue veil when diabetes becomes overwhelming.
And sometimes we lift that veil to allow others to step in underneath it to see our secrets and share in its comfort.
But this is what I know: my world is colored with the beautiful blue that symbolizes my community and my friends. And I wear my blue veil proudly and hope that I can protect it as well as it has protected me.
As November draws to a close and another “Diabetes Awareness Month” is on the books, the general public will go on to the next awareness campaign. I’m not angry or jealous, as we should all look to other communities with the same openness that we ask from them. I am just so very grateful that my blue veil will not disappear or leave me. It is always with me.
Even in a museum tucked in a corner, waiting for me to find it.