Whether you want to attribute it to Lincoln’s famous speech regarding slavery or a line in the New Testament (Mark 3:25), I’m repeating it for all of us to hear:
“A house divided cannot stand.”
I have diabetes. It’s an insipid disease that slithers into lives, laying waste and fear in its wake. It cannot be compared to other diseases; it’s unfair and pointless. Moments are stolen from all of us who live in the shadow of its open maw, and sometimes not just moments, but the very breath we draw.
It does not matter what permutation of diabetes exists in my body. In every form, regardless of subset, the insufficient supply of insulin damages cells and organs and brains. Depending on the insufficiency, the damage can be rapid or so slow that it’s not noticed until well after the damage is done.
Every person with diabetes is at risk for stroke, heart disease, retinopathy, blindness, kidney disease, neuropathy. Every person.
Every family with diabetes is subjugated to stress, heartache, frustration, and financial burdens. Every family.
The Divided House
I am a member of the diabetes community. Anyone who lives or cares for someone with diabetes is a part of the community. We all want the same end result: long, healthy lives free of the burden of this chronic illness.
Some of the community focuses their time and effort on cures. Others on technology. Emotional support. Financial issues. There are many avenues this community travels down together. All are worthy when the goal is to help make our lives better.
But this community, this house I love, is a house divided.
Over the past few years, as voices amplify with the Internet’s loudspeaker, the rise of separatist factions is coming to bear. Here are the voices from the crowd:
“I’m sick of the public thinking I’m Type 2.”
“Those people could have just not gotten fat and they wouldn’t have gotten Type 2.”
“Type 1s talk about how hard it is, but they don’t realize that Type 2s struggle too.”
“My son did nothing to deserve getting Type 1.”
“I’m thin with Type 2, but people think that it’s lifestyle, not genetics that got me here.”
“I’m not like them.”
But you are. We all live in this house.
The Numbers Don’t Lie, But They Are A Little Fuzzy
29.1 million people have diabetes in the United States.
21.0 million of them are actually diagnosed. The rest (8.1 million, because that’s easy math for me to do) is undiagnosed. People walking around with slightly elevated blood glucose levels… enough to do long-term damage.
3.0 million of those diagnosed with diabetes are Type 1. (Only about 10 percent of the total diabetes population.)
The dollar cost of diabetes, direct and indirect for 2012, which is the latest stat, is $245 billion. (The indirect part is work loss, disability, and death.)
The numbers are fuzzy because we don’t look at the big picture. What does this house look like? Is it a duplex with no way to help each other if someone needs support? Is it an apartment building with tiny boxes for parents of T1s, T2s, adult T1s, undiagnosed/pre-diabetes T2s, Medicare recipients, uninsured, and T2 kids all coexisting and trying to get landlord’s attention?
Our House is Getting Crowded
Every thirty seconds, we get a new member in our house. Every thirty seconds, someone in the United States is diagnosed with diabetes. We need a stable house with a firm foundation, because we need more room. The rate of diabetes is not decreasing; it’s increasing.
Without strong, unifying voices, we’re going to be fighting over who gets to use the remote control or who hogs the bathroom in the morning.
Step outside of the house and go stand on the sidewalk. How do you think our house looks like to a passerby on the street?
Is the exterior a hodgepodge of different colors, because we couldn’t decide?
Are windows boarded up because a particular group doesn’t need the sunlight shining on them?
Do we have an inviting path to greet everyone who knocks?
Is there a beautiful, intricate melody with different voices singing the same song, but allowing each group an opportunity to solo… but the chorus is the same? Or does the world hear cacophony? Or worse… nothing at all because we’re all just whispering different things?
I do not want a diabetes house divided.
I want a diabetes home.
Home, Sweet Home
How can you help make our house a home?
Educate the public about diabetes: the differences AND the similarities between the different types. (Get educated yourself by reviewing the statistics and the research and the information that many major diabetes organizations provide to help explain.)
Let your policymakers know that it doesn’t matter what type of diabetes we have; we ALL matter when it comes to funding and public policy. There are bills being introduced on the Hill and in some states that can help – or hurt – people with diabetes. Find out what you can do. Even if you’re a Type 2, you can lend your support and your voice to CGM Medicare bill.
Ask people to describe their diabetes when you’re having conversations. If you (or your child) has Type 1 diabetes, learn from a person (children get Type 2 as well, although it’s not as prevalent) with Type 2 about what they do every day to live well with diabetes.
Focus on what is important: life WITH diabetes, not matter what Type, deserves attention and respect. In fact, we all as humans deserve attention and respect. Find the common ground and even if you don’t have much common ground, there is a piece that we can all build from…
Help build our community.
Help build our home.
Help make a home for everyone impacted with diabetes and let the world know that we are united.
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?
Today is officially “World Diabetes Day”, one day out of 365 that we are all supposed to take to the skies to spread diabetes awareness.
If you have diabetes, it’s Friday, one day out of… the rest of your life.
You’ll be inundated by social media mentions of WDD and the color blue (chosen as the patron color of awareness) will be worn by those in the know. I had planned on telling you all the events and excitement that is going for World Diabetes Day, but instead, I woke up with this in my head…
This I Believe
I believe that if your pancreas doesn’t work as it should, you are part of my community. This means my voice is yours to raise if you want to help the community as a whole. This means I will champion for you, no matter where you fall on the “pancreatic spectrum”.
I believe that all 382 million people living in this world with diabetes today deserve to live their lives without discrimination, stigmatization, or finger-pointing. Diabetes doesn’t discriminate. Neither should our community.
I believe that diabetes awareness begins with me. The more I understand about my diabetes, the more comfortable I am passing on the right knowledge to others, be it friends, strangers, or the general public.
I believe that I have a duty to educate people about diabetes without prejudice or anger. We are not a house divided; some individuals with one type of diabetes has been helped by another’s research. To silo us is to separate us and the potential to learn from each other. I do not expect the general public to understand the difference between different types of diabetes, just as I do not purport to know about all of the different types of cancer. They are all devastating and have different courses of treatment, just like diabetes.
I believe that it doesn’t matter what diabetes is called. I have it. Mine might be different from yours, but in the end, our goals are the same: to live long and well with as few complications as possible.
I believe that access to technology and treatment should be available to all. Regardless of where you are, what you do, if you have insurance or live a life of privilege, we do not have a choice.
I believe the fault is in our genes, not in our choices. No one “chooses” to have diabetes and to berate or belittle someone for a perceived lifestyle discounts the science showing that most diabetes involves a genetic predisposition.
I believe that the impact of diabetes is not just on our bodies, but our psyches, wallets, and families as well. There is not enough treatment effort given on the psychological aspects of living with diabetes, not enough financial assistance given for those living with this chronic illness, and not enough support to those who love us. This needs to change.
I believe that a cure will not be the end of living with diabetes. I will always live with the vestiges of this disease, even if there is a cure found. The damage that has been done to me by the disease will live on long after a cure. There will be no way to undo what diabetes has given to my body and my mind.
I believe that we all have work to do for diabetes, using what talents we have. For some, it’s advocating, fundraising, or awareness. For others, it’s the important job of living gracefully and with dignity. We all matter in the work we do.
I believe that we cannot live a life of diabetes alone.
Today is World Diabetes Day. We don’t party with funny hats and beer with limes in them, or funny hats and green beer, or funny hats and…O.K., so we may party today with funny hats. (In fact, I’m headed to the Diabetes Mine Innovation Summit in Palo Alto, CA right now. There will be some well-deserved celebration with other people with diabetes tonight.) But diabetes is no party.
I’m going to give you some numbers, because numbers are solid and tangible and can be referenced to something. (Feelings and opinions make for lousy quadratic equations.)
There are more than 371 million people in the world with diabetes.
My blood glucose has been as low as 28 and as high as 778. (Got a thing for numbers ending in 8, my body.)
79 million people in the United States have “pre-diabetes”, meaning they are at risk for developing Type 2 diabetes without making lifestyle changes.
In 2012, the direct medical cost in the U.S. for diabetes was $176 billion. (Yes, with a B. Billion.)
I’ve checked my blood sugar approximately 44,530 times.
Diabetes is the 7th leading cause of death in the United States.
A single vial of Humalog insulin is $148 without insurance at my local pharmacy.
People with diabetes spend an average of $13,700 per year on medical expenses; about $7,900 of that is attributed directly to diabetes care.
The risk for stroke and heart disease is 2 to 4 times higher among people with diabetes.
There are more than 3 million Americans with Type 1 diabetes – 85% of them are adults.
Diabetes is the number one cause of kidney failure, nontraumatic lower-limb amputations, and new cases of blindness among adults in the United States.
4.8 million deaths in 2012 (the last time global mortality data was compiled) were caused by diabetes.
80 people each day are diagnosed with Type 1 diabetes in the United States.
Those with type 1 diabetes are living around 11 to 14 years less, on average, at the age of 20 to 24 years than those in the general population; this figure drops to 5 to 7 years less at age 65 to 69.
The World Diabetes Day campaign is led by the International Diabetes Federation (IDF) and its member associations. It engages millions of people worldwide in diabetes advocacy and awareness. World Diabetes Day was created in 1991 by the International Diabetes Federation and the World Health Organization in response to growing concerns about the escalating health threat that diabetes now poses. World Diabetes Day became an official United Nations Day in 2007 with the passage of United Nation Resolution 61/225. The campaign draws attention to issues of paramount importance to the diabetes world and keeps diabetes firmly in the public spotlight.
Why today? It’s the birthday of Frederick Banting who came up with the idea leading to the discovery of insulin in 1922. So, because of him (and Charles Best), I’m alive today.
And that’s a good enough reason to put on a funny hat and celebrate.
(Thanks to IDF, the U.S. Government, ADA, and JDRF for these statistics.)