I hear her laughter and my heart swells with love.
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.
No laughter.
No life.
No more.
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?
Us.
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.
Five dollars.
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.
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?
And of course, think about the people YOU love. You can donate in their name, then print out this card (or the other one) to let them know you love them more than roses.
After not being able to find a single source for diabetes events and conferences that might be of interest for those who have diabetes and/or advocate for diabetes, I decided to create one in 2014 – and we’re continuing with a 2015 calendar for all diabetes conferences and events that you might be interested in attending.
Ta-da.
Please note that this is U.S.-centric, as I currently live in the United States. (Most of me. My pancreas is currently on the lam somewhere where it cannot be extradited.) However, I have added some international conferences. Most of these can be attended by the hoi polloi, but some do require a medical designation/degree (although a press pass may provide entry). These are regional or national shindigs, not local groups or walks.
If there is one that I have missed, please notify me at theperfectd [at] gmail [dot] com so I can add it. I will be updating this calendar throughout the year so I suggest you bookmark this page now. (Go ahead. I’ll wait.)
Click on the title of the conference/event for the website link/additional information.
January
Winter Slipstream 2015 (Connected in Motion) January 16 – 18, 2015 – Camp Kandalore, Algonquin Highlands, Ontario, Canada
If you’re sporty and love The Great White North (to which the latter I can wholeheartedly attest), then go hang out with other Type 1s and do some cold weather athletic stuff. Connected In Motion is an amazing organization that will hopefully continue to do a lot of amazing work now that the U.S. based diabetes athletes organization, InsulinDependence, has closed its doors.
The American Diabetes Association, Maryland Chapter is pleased to present a day of learning and interacting with world renowned scientists and clinicians focused on finding cures and better treatments for diabetes. This is free and open to the public, but only the first 220 registered can attend.
TCOYD is a one-day program with tracks for both Type 1 and Type 2 individuals (and their friends and family, of course). Those who attend will have opportunities to learn about the latest tools, tips, techniques, and technology to help live healthier lives with diabetes. What I love about this program is that it was founded and is run by physicians who have intimate knowledge of diabetes; they have the disease! Many of the speakers also have Type 1 or Type 2 diabetes, so it’s not as if it’s a “do as I say and not as I do, because I don’t have a clue” program. If you have one coming to your area, you’re fortunate!
The American Diabetes Association Expo is a one-day exposition where one can peruse through exhibits and talk with professionals and those who are looking to promote items that may help people with diabetes manage the disease. There are health screens and demonstrations and is open and free for everyone. (If you know of anyone who may be at risk, bring them to one of these.)
This meeting, held not in the United States, will present “top level research” in all areas of diabetes technology. They claim that they will also present a joint statement from the ADA and EASD on insulin pumps.
Family Retreat is an event designed for all people living with type 1 diabetes. Education and activities are built specifically for families with children or teenagers with type 1 diabetes. There will be separate breakout sessions for parents, teenagers, and children.
Registration fees include all meals, activities, and hotel room for Friday evening through Sunday morning. Families or groups of 6 or more will be charged additional fees for a second room. ($180 Adults, 18 and over, $60 Children, 4-17 years old, Children 3 years and younger are free – financial assistance is available.)
A medical conference much like other scientific sessions, leading diabetes experts will give presentations on the latest in diabetes research and care, with small networking sessions thrown in for good measure. Targeted primarily for physicians, physician assistants, nurses, nurse practitioners, dietitians, pharmacists, psychologists, certified diabetes educators, and other health care professionals who care for patients with diabetes and who manage the complications related to this disease.
Made possible by the Beckman Research Institute of City of Hope, held in association with the Endocrine Society annual meeting and T1D Exchange. This is the meeting that I wish I could attend, because it covers some amazing topics: new biomarkers and drug targets, epigenetics (A debate on virus or “not a virus”) talks about the DCCT, inflammation, live debates, beta-cell function, islet cell reprogramming, and much more. (If anyone is going, please get in contact with me at theperfectd [at] gmail.com because I want to pick your brain!)
“We are thrilled to provide this unique opportunity for education and dialogue with leading experts and researchers in the type 1 diabetes (T1D) field on Saturday, March 7, 2015 at no cost to the attendees. In addition to the main program, we offer an exhibit hall full of all the latest and greatest in T1D education, resources and technology, as well as a Youth Program and Teen Track with age-appropriate guest speakers and activities. In 2014, the TypeOneNation Research Summit attracted over 800 individuals from the Mid-Atlantic region and we are looking forward to another great year!New this year — “Taking T1D to School” session.Admission is FREE with suggested donation. Buffet lunch is provided. Registration is REQUIRED and opens here on January 7th.”
Remember that endocrinology is not just about diabetes; it’s about the entire endocrine system. While the annual conference does have diabetes sessions, it’s not the primary focus.
TCOYD is a one-day program with tracks for both Type 1 and Type 2 individuals (and their friends and family, of course). Those who attend will have opportunities to learn about the latest tools, tips, techniques, and technology to help live healthier lives with diabetes. What I love about this program is that it was founded and is run by physicians who have intimate knowledge of diabetes; they have the disease! Many of the speakers also have Type 1 or Type 2 diabetes, so it’s not as if it’s a “do as I say and not as I do, because I don’t have a clue” program. If you have one coming to your area, you’re fortunate!
The first peer-to-peer idea exchange and support conference for all adults with Type 1 and Type 2 diabetes. Unlike other conferences geared to patients, this conference has no keynotes or research/expert presentations; just discussions facilitated by those with diabetes about topics that may be difficult to have with people who don’t have diabetes!
The American Diabetes Association Expo is a one-day exposition where one can peruse through exhibits and talk with professionals and those who are looking to promote items that may help people with diabetes manage the disease. There are health screens and demonstrations and is open and free for everyone. (If you know of anyone who may be at risk, bring them to one of these.)
The Bay Area Diabetes Summit is a collaborative effort of medical providers, community organizations, and medical institutions throughout the Bay Area. Dr. Bruce Buckingham of Stanford University and Dr. Ed Damiano of Boston University, developer of the Bionic Pancreas, will be the keynote speakers at the Summit.
The Summit is open to all adults with T1D and their spouses, friends, and significant others, parents, caregivers, and family members of children with T1D. Children with T1D and their siblings can register for a Kids Camp offered by DYF counselors and staff.
TCOYD is a one-day program with tracks for both Type 1 and Type 2 individuals (and their friends and family, of course). Those who attend will have opportunities to learn about the latest tools, tips, techniques, and technology to help live healthier lives with diabetes. What I love about this program is that it was founded and is run by physicians who have intimate knowledge of diabetes; they have the disease! Many of the speakers also have Type 1 or Type 2 diabetes, so it’s not as if it’s a “do as I say and not as I do, because I don’t have a clue” program. If you have one coming to your area, you’re fortunate! (They’re missing the entire southeastern portion of the United States.)
The American Diabetes Association Expo is a one-day exposition where one can peruse through exhibits and talk with professionals and those who are looking to promote items that may help people with diabetes manage the disease. There are health screens and demonstrations and is open and free for everyone. (If you know of anyone who may be at risk, bring them to one of these.)
If you are looking for a conference that focuses on being a woman with diabetes, then look no further. Both Type 1 and Type 2s are welcomed with open arms and significant others are offered opportunities to talk (privately and separately) while you attend the conference. This is an opportunity to learn from other women and bask in the camaraderie of friends made (who just happen to also have diabetes).
TCOYD is a one-day program with tracks for both Type 1 and Type 2 individuals (and their friends and family, of course). Those who attend will have opportunities to learn about the latest tools, tips, techniques, and technology to help live healthier lives with diabetes. What I love about this program is that it was founded and is run by physicians who have intimate knowledge of diabetes; they have the disease! Many of the speakers also have Type 1 or Type 2 diabetes, so it’s not as if it’s a “do as I say and not as I do, because I don’t have a clue” program. If you have one coming to your area, you’re fortunate! (They’re missing the entire southeastern portion of the United States.)
According to the website, that $2095 will get you research, partnership opportunities and network with academia, venture capital, government, small/medium size biotech, big pharma and healthcare organizations. The summit includes the Diabetes Drug Discovery and Development Conference, dealing with the clinical side of things. The Diabetes Partnering & Deal-Making Conference dives into opportunities for partnerships, funding, licensing, and the financial bits of it all.
(Now, that all being said… If you look at the speakers, I wish I had the $2095 to attend. Some of them are the top researchers in the diabetes community.)
This amazing event is for preteen/teen girls with T1D and their moms. This weekend focuses on T1D from a female perspective and addresses the female cycle from puberty to pregnancy and how it affects and is affected by T1D. Mother daughter communication, healthy body image, talking with peers and significant others about T1D, and more will be discussed.
TCOYD is a one-day program with tracks for both Type 1 and Type 2 individuals (and their friends and family, of course). Those who attend will have opportunities to learn about the latest tools, tips, techniques, and technology to help live healthier lives with diabetes. What I love about this program is that it was founded and is run by physicians who have intimate knowledge of diabetes; they have the disease! Many of the speakers also have Type 1 or Type 2 diabetes, so it’s not as if it’s a “do as I say and not as I do, because I don’t have a clue” program. If you have one coming to your area, you’re fortunate! (They’re missing the entire southeastern portion of the United States.)
While not patient-centric, attendees will hear “cutting-edge research translated into clinical practice”. The 30th Annual Clinical Conference is designed specifically for primary care and diabetes specialty physicians, doctor of osteopathy, podiatrists, pharmacists, physician assistants, nurse practitioners, nurses, psychologists and dietitians, certified diabetes educators and other health care professionals who care for patients with diabetes, at risk for diabetes, and who manage diabetes related complications.
A conference for young adults aged 18 – 30 from all over the country who want to learn about the latest in technology, research, and more from many amazing speakers.
The “big” medical conference. While not specifically designed for the layperson with diabetes, many advocates do attend and sit in on sessions. Many study results are presented. Last year’s presentations weren’t mind-blowing, but we have a feeling that some big study results are on the horizon.
For anyone who is interested in learning how easy it is to raise awareness (and your voice) for diabetes advocacy, attend this program. While held in the same space as Friends for Life’s conference, it’s a separate conference. Last year’s program was amazing, and this year’s is promised to be even better!
This is the de facto gold standard for any family with diabetes. It’s being held this year at Disney’s Coronado Springs Resort.
Room rates are $149 + tax. This rate is available from July 3, 2015 to July 13, 2015. You may reserve a room, buy park tickets, make Disney Dining reservations, and arrange for free Disney Transportation from the Orlando Airport to the hotel online at www.disneyurl.com/ChildrenWithDiabetes2015Conference.
While not a patient conference, worth taking a look at to see what’s being discussed. “This course is designed to help healthcare providers caring for patients with diabetes, including but not limited to, endocrinologists/diabetes specialists, internists, pediatricians, family physicians, physician assistants, medical residents, fellows, nurse practitioners, nurses, dietitians and certified diabetes educators.”
August
AADE 15 (American Association August 5-8, 2015 – New Orleans, LA
Ernest N. Morial Convention Center. Registration will be open in March, 2015.
TCOYD is a one-day program with tracks for both Type 1 and Type 2 individuals (and their friends and family, of course). Those who attend will have opportunities to learn about the latest tools, tips, techniques, and technology to help live healthier lives with diabetes. What I love about this program is that it was founded and is run by physicians who have intimate knowledge of diabetes; they have the disease! Many of the speakers also have Type 1 or Type 2 diabetes, so it’s not as if it’s a “do as I say and not as I do, because I don’t have a clue” program. If you have one coming to your area, you’re fortunate! (They’re missing the entire southeastern portion of the United States.)
The American Diabetes Association Expo is a one-day exposition where one can peruse through exhibits and talk with professionals and those who are looking to promote items that may help people with diabetes manage the disease. There are health screens and demonstrations and is open and free for everyone. (If you know of anyone who may be at risk, bring them to one of these.)
The American Diabetes Association Expo is a one-day exposition where one can peruse through exhibits and talk with professionals and those who are looking to promote items that may help people with diabetes manage the disease. There are health screens and demonstrations and is open and free for everyone. (If you know of anyone who may be at risk, bring them to one of these.)
TCOYD is a one-day program with tracks for both Type 1 and Type 2 individuals (and their friends and family, of course). Those who attend will have opportunities to learn about the latest tools, tips, techniques, and technology to help live healthier lives with diabetes. What I love about this program is that it was founded and is run by physicians who have intimate knowledge of diabetes; they have the disease! Many of the speakers also have Type 1 or Type 2 diabetes, so it’s not as if it’s a “do as I say and not as I do, because I don’t have a clue” program. If you have one coming to your area, you’re fortunate! (They’re missing the entire southeastern portion of the United States.)
Registration is priced on a per person basis for everyone ages 5 and older. Early registration rates will be $50/person. “Please note that we expect the conference to sell out and do not plan on having on-site registration.” You must register separately for the conference and hotel. Registering for the hotel does not register your family for the conference itself.
Note: You must register separately for the conference and hotel. Registering for the hotel does not register your family for the conference itself. Conference Registration will open in February 2015.
TCOYD is a one-day program with tracks for both Type 1 and Type 2 individuals (and their friends and family, of course). Those who attend will have opportunities to learn about the latest tools, tips, techniques, and technology to help live healthier lives with diabetes. What I love about this program is that it was founded and is run by physicians who have intimate knowledge of diabetes; they have the disease! Many of the speakers also have Type 1 or Type 2 diabetes, so it’s not as if it’s a “do as I say and not as I do, because I don’t have a clue” program. If you have one coming to your area, you’re fortunate! (They’re missing the entire southeastern portion of the United States.)
Experts in diabetes care from around the world will exchange diabetes research and best practices. Physicians, scientists, nurses, educators and other healthcare professionals, as well as government officials, policy makers and representatives from 230 IDF Member Associations will gather to learn, discover and connect.
The WDC 2015 will coincide with the expiration of the current Millennium Development Goals and the adoption of the new Post-2015 Development Framework, a major push for expanded access to diabetes prevention, treatment and a cure.
PLEASE NOTE:
We are still waiting on dates for the Diabetes Technology Society meetings. It is also unclear is there will be another National Conference on Mental Health Issues of Diabetes.
I did not include “invite only” conferences.
As always, there are bound to be more opportunities to meet other people with diabetes, learn about the disease, and advocate. These are just a few. As I hear of more, I’ll post them here.
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.
So, the hypothetical person for this exercise is a Type 1 adult in the United States who weighs 60kg, just like the other calculation post I did.
Ground Rules
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.
Insulin
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.)
Insulin Pumps
This is an early version of an insulin pump. You’d never get a button error with this. Dials!
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.)
Cartridges
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
Insertion Sets
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.)
Medtronic
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!
Cost per month without Accu-Chek To program: $151.45
Cot per year without Accu-Chek To program: $1817.40
Cost per month with Accu-Chek To Program + regular purchase: $131.77
Cost per year with Accu-Chek To Program + regular purchase: $1581.24
(Remember, if you use the subscription based Accu-Chek To Program, you can purchase 50ct Accu-Check Aviva Plus Test strips for $20.00 and 100ct. for $40.00 per month.)
(Remember, if you use the subscription based Accu-Chek To Program, you can purchase 50ct Accu-Check Aviva Smartview Test strips for $20.00 and 100ct. for $40.00 per month.)
Cost per month without Accu-Chek To program: $138.85
Cot per year without Accu-Chek To program: $1666.20
Cost per month with Accu-Chek To Program + regular purchase: $123.31
Cost per year with Accu-Chek To Program + regular purchase: $1479.72
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
If you’re on an intensive management plan, then you’re strongly encouraged to have a glucagon kit available in case you have a severe hypoglycemic reaction. This item isn’t cheap.
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:
Endocrinologist/CDE
Cardiologist
Podiatrist
Nephrologist
Neurologist
Ophthalmologist/Retinal Specialist
Orthopedic specialist/surgeons
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:
$23,348.47
If you have already purchased a pump and a Dexcom, the out of pocket costs would be:
$16,574.18
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:
$14,439.80
If you have already purchased a pump and a Dexcom, the out of pocket costs would be:
$11,842.80
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:
$16,917.27
(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:
$11,261.28
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?
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…
Ground Rules
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.
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…
Insulin
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
Syringes
You have insulin, but you need the vehicle to get the insulin into you: syringes.
$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.
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.
Total cost per year: $64.24 ( you only have to buy 11 boxes if you buy the larger box each month).
Miscellaneous Supplies:
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.
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)
Lab Tests/Vaccines
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
One visit (minimum) to a health care provider to do physical exams, etc. If there is any evidence of complications or comorbidity, additional visits may be requested.
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.
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 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 those assumptions are wrong (and most of the time, they are) there are additional thousands of dollars to be spent out of pocket. You can’t get those services at Wal-Mart prices.
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.
“28 year old Type 1 diabetic with a blood glucose of 33 mg/dl after three juice boxes. It’s been over forty minutes and it’s not coming up.”
“Is the patient unconscious?”
“I am the patient.”
Silence greeted me at the other end of the line, then the emergency operator croaked out:
“Wow. All right. Paramedics are on their way. Can you unlock the front door?”
In 1998, I made the first and only 911 call (so far and knock on wood) about my diabetes. Dinner was vegetarian chili and a beer, and before the pump came into my life, it was the ol’ fast and slow acting insulin show. What was injected in was going to be acting for a long time.
I didn’t count on my food not acting at digesting well – or in this case, at all.
While I was living with someone, he worked nights in the ER at a hospital across town. I was alone. A few hours after I finished my meal, I felt overwhelmingly sleepy, so I got up to check my blood sugar before snuggling down into bed.
32 mg/dl.
Before I see a number like that on my meter, I’m not panicking. It’s that fuzzy thought of: “I’m probably a little low,” that turns into: “Oh. Oh. Oh. No.” I’m fine before and then I’m not. All rational thought flies out the window. It’s go time.
The first juice box went down easy. I remember intently studying the carb count on the side of the box, willing that 24g of pure apple to kick into gear. I knew I would need to ingest more than 24g, but it would get me out of the weeds.
I watched the clock. Tick. Tick. Tick. Precisely fifteen minutes later, I checked again.
35 mg/dl.
My inner monologue was a little salty and blue. The second juice box was choked down. Did you know that you can make a game of pulling a juice box straw in and out of the hole, trying not to pull it out of the box? I lost the game a lot, but it was something to focus on as I sat on the floor of the bedroom, blatantly ignoring the rising adrenaline and cortisol levels.
Low blood sugars suck. I’m one of those people who can still function (and I use function loosely, but I can still verbally communicate and stay upright) in a severe hypoglycemic state. I’ve never passed out from a low. In later years, I’ve had severe hypos when I needed assistance and ones in which my muscles contracted involuntarily, squeezing to get that extra glucose out to help save me. (That is NOT a pleasant experience.) But I had someone around to help me.
I was alone. And after the second fifteen minute mark, the meter was reluctant to show me where I was at.
33 mg/dl.
I picked up the phone and called my boyfriend at work.
“I’m low.”
He knew that I wasn’t calling to chat. He worked in an ER and I never called him there.
“How low?”
I explained, rambling a bit about how I was tired of juice boxes, and that I’m still not coming up.
“Here’s the deal, Christel. We can hang up and you can call 911 or we can hang up and I can call 911. Which do you want?”
We hung up. I placed the call and confused the operator with my 33 mg/dl and I’m still conscious and it’s me and not someone else. Paramedics showed up less than 5 minutes later and tramped into my living room with cases of equipment to find me watching late night TV, taking minuscule sips from my fourth juice box.
They offered IV dextrose and a trip in their shiny ambulance to the local ER. I asked them to wait with me for 15 minutes more and retest. We talked about what happened and then laughed at the informercial blaring from the corner.
55 mg/dl.
They stayed another 15 minutes and I admitted that there was no way I could put anything else in my stomach, so if my blood sugar went south or stayed that low, my veins were their playground.
73 mg/dl.
I felt like I won the lottery.
My boyfriend had called a coworker who was in our complex and had just gone off shift to come be with me for a while. She arrived, flirted with one of the paramedics, and hung out while I slowly drifted upwards to 104 mg/dl. We both slept in the living room.
I was diagnosed with severe delayed gastric emptying two weeks later. (I had other incidents after that, none as serious, where I would eat and go low after a high carb meal with a very slow response to treating glucose.) My stress levels were off the chart and the combination of my body rebelling from the stress and my diabetes manifested in this lovely lack of digestion. I was sent home with anti-emetics and some gastric motility drugs, wondering how I was going to live with this.
Happy to say that my stomach decided to work again after a while (and after the stress went away). But that 911 call is my reminder that no matter what, when you need help, pick up that phone as soon as possible.
Why do I tell you this story? Because I almost didn’t pick up the phone.
And no one would have been there to make that call for me.
I hear her laughter and my heart swells with love.
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.
