My Affair With Earnest Hemingway…

1336773_53028368My affair with Earnest Hemingway is neither about love, nor about hate.

It is about his paucity of words and the emotions you must mortar into the cracks of his meanings.

It is about his inability to end a story (or even his life) with any hope or joy.

It is about his words that slip beneath my skin to leave me shivering.

It is about how I abhor reading the words he wove together and yet, a quote he gave has shaped my life and aptly explained my last few weeks.

Not Reading It Again

I was subjected to Old Man and The Sea twice in high school, pulling apart overarching themes and writing trite, hackneyed literary criticisms just like every other teenager. Why twice? Three high schools in four years means forced rereading of a few books. (MacBeth was a three time winner – middle school gave me a head start, Midsummer’s Night Dream was also twice, but thankfully, Crime and Punishment and a list of Russian names written down for reference was, thankfully, devoured only once.)

Upon reaching the third high school in January of my junior year, my English literature teacher handed the book we would be reading next. Old Man and The Sea. I handed it right back.

“I’m not reading it again. I’ve read it twice. Hated it twice. Dissected it twice. It’s depressing. Give me something else to read and I’ll do a separate assignment.” (Yes, even as a teenager, I was… is pushy the right word?)

So, my teacher brought in his personal copy of A Farewell to Arms by Ernest Hemingway for me. In retrospect, I think he did it to spite me. “Old Man and The Sea is depressing? I’ll show you depressing.” I read it and neared the end, clutching that tatter of hope his characters created for themselves.

Hemingway is an ASS.

If you were in my neighborhood as I read the last two pages, I apologize for the angry screams of: “COME ON! SERIOUSLY?! Hemingway is an ASS!” I stomped into class the next day, threw the book on my teacher’s desk, and muttered: “This sucked worse than The Old Man and The Sea.”

To this day, I have yet to read any of his other works. Don’t ask me to do so. There are many other pieces of literature that can depress me, but none with the compact, gut wrenching nature of his view on life. I get enough of that already from reality. (Lest you think I like sappy, happy movies or books… I abhor those, too.) One day, perhaps, I will have the strength and resolve to read the rest of his painful brilliance. For now, they wait.

But… he said something that, if I had any desire to tattoo my body, would be inked across my chest:

“The world breaks everyone, and afterward, some are strong at the broken places.” – A Farewell To Arms

COBRA

Over the past few weeks, the world did its best to break us. Two weeks after meeting our high deductible health plan’s deductible, John’s company surprised a few people by laying them off on the last day of October. Surprise! Including John.

All of the benefits: medical, dental, etc. was terminated “on the last day of the month“. That meant that day. My supplies (and new Dexcom transmitter) hadn’t been ordered. And I couldn’t get them ordered in time before the end of the day. OK, I thought. Breathe. I’ll just order them all when we purchase COBRA.

We’ve purchased COBRA before, but when I called to find out the cost, it was outrageous. Laughably outrageous. The representative gave me this advice:

“Purchase everything out of pocket and keep the receipts; if the total for the month was higher than the cost of COBRA, go ahead and pay COBRA and you’ll get reimbursed.”

We started to investigate other options, including Healthcare.gov’s plans for our state and found that those plans were better – and less expensive – than what we were paying if you factor in the high deductible. Yes, I know all about the pre-tax blah blah blah, but it was frustrating to think that we could have avoided the shenanigans with medical decision making this year if we had just eschewed his company’s crappy medical insurance plan and gone with a marketplace plan.

The World Breaks My Technology

A week later, my Dexcom transmitter died. It was a slow death and I knew it was coming, but when it finally shuffled off its digital coil, it was still jarring. It also felt like it said: “HAHA, I knew you didn’t order a replacement before your insurance kicked it!”

I went without, reminding myself that I went without continuous glucose monitoring for years. Of course, every time I checked my blood sugar, all I could think was: “What would the arrow say?” Blood glucose checks increased, but I felt unsure. I felt high, but I was within normal range. I felt shaky, but I was slightly high. Adjust, check, adjust, check. I didn’t trust how I felt. For good reason.

Et tu, Brute?

Then, in solidarity, my insulin pump died. Four weeks and two days out of warranty. I hadn’t ordered a new one because… you know the story. Deductible. Crappy coverage. It happened on a Friday night while I was across the country, but if your pump is going to stop working, it should stop working while you are standing with other Type 1s at the Diabetes Mine Innovation Summit.

“What the hell? I can’t bolus. Look!” I showed the pump to the group and the troubleshooting suggestions started to fly fast and furiously. “Try this!” “Take the battery out and see if it will reset!” “Let it time out and see if that will do anything!”

And then…

“It’s says Button Error.”

The groan was collective. In the fifteen years of pumping insulin, I had never had a catastrophic failure. And of course, with my head being not in the game, when I packed, what was the one thing I didn’t bring? The back up bottle of Lantus. My head started to go down the rocky road of microbolusing or finding an open pharmacy or spending time on the phone with the pump company begging for a loaner when one of the people standing in the group who uses the same pump as I do said something amazing:

“I have an extra pump that I travel with. You can borrow it.”

Do you know how hard it is to program an insulin pump with tears of gratitude in your eyes? Less than an hour after the failure of my pump, I was pumping again. BG upon reconnecting? 126. (I thought I was high. I felt high.)

Fortunately, my blood glucose monitors are holding steady. They obviously hadn’t gotten the memo that John had been laid off.

Suck It, Hemingway

Ernest thrived on making people miserable and ending his stories on a sad, introspective note. I’m no Hemingway (says the verbose woman writing this blog) and so the end of the story will be a happy one.

  • John recently accepted an offer for a better job – better pay, closer to home, doing what he loves.
  • Because I had done homework on Healthcare.gov, I was able to look at the medical insurance offered and decided we would choose a marketplace plan that is more expensive, but has better coverage – way better coverage and NO deductible for durable medical equipment. (I did a lot of homework, calling an insurance specialist and getting the answers about insulin pump and CGM coverage. It does pay to do your homework.)
  • The DOC (Diabetes Online Community) and the diabetes community are filled with amazing people. A friend sent me her transmitter and a few sensors to tide me over. I have had many others offer to help with supplies. I am a firm believer in paying it forward, but never expected to be the one receiving.
  • The posts I wrote about U.S. financial assistance and programs for people with diabetes and if you are a Type 1 without insurance  was meant to help others… but I reread my own words. Twice. Maybe three times. And unlike Hemingway, those words and programs that companies offer gave me hope.

So, Hemingway. You’re right… about (at least) one thing.

The world does break us all. And I am stronger in the broken places.

But unlike the old man and a solitary trek into the ocean to battle marlins and sharks and the metaphors meant to taken from your work, this part of my story ends on a happy note, filled with helpful people and a community that does what it can when it’s needed.

The End

 

 

Type 1Diabetes + No Insurance? How Little Can You Pay To Live?

Money

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.

I am using the American Diabetes Association’s Standards of Care 2014 as the guiding document.

Most of the items listed can be purchased at Wal-Mart. Why Wal-Mart? Because ReliOn items, sold at Wal-Mart, are the cheapest on the market. I can’t vouch for their accuracy, efficacy, or their overall comfort and convenience. With the exception of the ReliOn glucose tabs that I purchased in an emergency once, I’ve never used these items. But here goes…

Insulin

PR-052_1280x580The 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

PR-038_1280x580You 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:

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.

Total cost per month: $36.00

Total cost per year: $432.00

Now, you have to have a lancing device to get that blood.

Total cost per year: $5.84 

0007874202646_180X180.jpg-5678a538e37caabcaab7cedf6058410c726dc3e5-optim-180x180You 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 month: $5.84

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.

Total Cost per year: $6.64

If you are following the guidelines, you’ll need to use an alcohol swab for every time you use a syringe or a lancet.

  • $3.74 ReliOn Alcohol Swabs, 400ct

You’ll use a whopping 2,920 of these each year. Minimum.

Total Cost per year: $29.92

Hypoglycemia? According to Diabetes Care:

Individuals with type 1 diabetes average 43 symptomatic episodes annually; insulin-treated individuals… As for severe hypoglycemic episodes, patients with type 1 diabetes experience up to two episodes annually…The risk increases with a history of hypoglycemia and an increased number of years of insulin treatment.

So, figure on one hypo per week. (You and I both know there are more, but again, we’re bare boning this.)

Hypoglycemia treatment options? Well, you could use glucose tabs or gels; they are the most effective in treating hypoglycemia. Still need something, so you can purchase juice or candy that can treat hypoglycemic reactions for less, but won’t be as effective or as portable or convenient.

  • $3.98 50 ct. ReliOn Glucose Tablets (with an average of 4 tablets for each episode, but you may have to buy something on the fly so this cost may be higher)

Total cost per month (average): $3.98

Total cost per year (average): $47.76 (not counting extra items purchased if you don’t care the glucose tabs with you at all times)

 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

797188_84253664One 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.

Total cost per year for a single non-specialist: $95 to $215 (depending on location, according to this 2014 article)

One visit (minimum) for a dilated comprehensive eye exam. (This cost referenced is for a standard eye exam. It may be more based on dilation.) Remember if the health care provider finds evidence of retinopathy, additional visits, treatment, and tests will be needed.

Total cost per year for an eye exam: $50 to $114 (depending on location, according to this website)

 

$1561.36

This is the bare minimum cost annually without insurance (or out of pocket if you have horrible insurance options, not counting the amount you are paying for premiums), if you are not eligible to use free services or patient assistance programs.

Remember The Ground Rules

This amount assumes you are not using an insulin pump, a CGM, any brand name products besides ReliOn, the latest analogues or medications, or using any resources that may cost extra. You are essentially using the same technology that I started with over 30 years ago when I became Type 1, except the blood glucose testing is less expensive and results are faster.

That amount assumes that you are eating a healthy diet (oh, wait… it costs more to eat healthy, so factor that in…).

That amount assumes you are without ANY complications from diabetes or have ANY comorbidities.

That amount assumes you do not take a statin or an ACE inhibitor (recommended by ADA for many patients).

That amount assumes you do not take ANY other medications – or gosh, need a Glucagon Low Blood Sugar Emergency Kit.

That amount assumes you do not have periodontal disease, heart disease, depression, hypothyroidism (which is the most common autoimmune disorder associated with T1 – up to 30% of us have it), kidney disease, neuropathy, frozen shoulder or trigger fingers, foot issues…

That amount assumes you will not be admitted to the ER, the hospital, need specialists (nephrologists, podiatrists, orthopedists, ophthalmologists, cardiologists, gastroenterologists) or have to take time off of work due to diabetes.

If you do need assistance, there are resources available for U.S. individuals with diabetes that meet certain criteria.  

Are you getting what I’m saying here?

607166_81443036If 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.