My healthcare nightmare

Me

Hi. My name’s Meghan. I live in Madison, Wisconsin. I’m almost 35 years old and not married. I call myself a certified crazy cat lady because I have three kitties that I adore. I also run a musical theatre company that I founded, and I study, blog, and publish about arts marketing. I work for a nonprofit historic trust, and occasionally walk dogs on the side. Money has never been plentiful for me, but I am happier doing what I love than working in a place I hate.

A diabetes crash course

I’m also a Type I diabetic. Type I diabetes is the rarer form of the disease, in which the pancreas does not create enough insulin, which is fatal. It takes only a matter of hours without enough insulin before the body goes into shock. Diabetes is the seventh leading cause of death in the United States (Source). Often we hear about Type II, which has multiple causes (sometimes related to weight or poor diet) and multiple ways it can be treated. 90 to 95% of diabetics are Type II. Other forms of diabetes include gestational diabetes, which occurs during pregnancy, and prediabetes, in which blood sugars are high but diabetes has not been diagnosed. (Source)

When I was about 8, I began having symptoms I didn’t understand. I wet the bed and was completely embarrassed, so I didn’t tell my mom. At school I was so thirsty I could barely get through a class period without getting up to gulp water. The symptoms had lasted only about a week, because I happened to have a routine checkup with my pediatrician scheduled. At that checkup, when they tested my urine, the found ketones, a dangerous sign of high blood sugar. When the doctor told us what was going on, it was the first time I saw my mother cry; she had, incidentally, just had a baby six weeks earlier. She was the same age I am now.

I was carted off to the hospital where I was formally diagnosed with Type I diabetes (also called Type I or insulin-dependent diabetes). I learned to take shots, monitor my diet, check my blood sugar, and look for warning signs of blood sugars being too high or too low. I came to accept diabetes as part of my life. It was a tall order for an eight year old. but I dealt with it.

Me with my brother, about six weeks after I was diagnosed.

To understand what comes next, you have to understand how insulin is given when the patient is taking shots. Typically, a Type I patient will take a long-acting insulin, which serves as a baseline and is released incrementally throughout the day, and a short-acting insulin, which is taken to counteract carbohydrates consumed with meals.

In the early 2000s, insulin pumps came on the market. Insulin pumps function as sort of a mechanical pancreas. Patients who went on an insulin pump no longer had to take shots, nor did they need two different kinds of insulin. A short acting insulin goes into the pump, and is released in tiny amounts hourly throughout the day. Before eating or when blood sugars are high, the patient takes a higher insulin dose through pushing buttons on the pump. The insulin is delivered through a catheter inserted in the abdomen. Pumps have made diabetes management easier for diabetics in many ways.

*****Important thing to know: HIGH BLOOD SUGAR = NOT ENOUGH INSULIN. CAN LEAD, WITHIN HOURS, TO KETOACIDOSIS AND DEATH*****

Health Insurance for diabetics

The Affordable Care Act, or Obamacare, signed into law in 2010 and put into effect in 2014, was an absolute godsend for me and millions like me. Jobs were scarce during and after the recession, and a full-time job with good insurance was nearly impossible for me to come by because, although I had a college education, it was in musical theatre. I had founded a professional theatre company that I was deeply passionate about, and was determined to make it work.

I was able to find a job in 2011 that offered health insurance, but was laid off in 2013. Prior to that, buying insurance for myself with a chronic illness such as diabetes was impossible. No one would sell me a policy, as a patient with diabetes was not profitable enough for a health insurance industry that could reject people, refuse to pay for things, or increase premiums on a whim. (See this infographic for details on the costs of diabetes.)

Being able to buy an insurance policy through the Health Insurance Marketplace saved my life. But it didn’t fix some really extreme problems with our healthcare system; namely, the fact that American healthcare is 100% profit-driven.

Nightmare prologue: Pressured into getting a new pump

I went on an insulin pump in 2005, then off of it again in 2008 when I lost my health insurance. I went back on the pump in 2012 while I had my good job. The pump looked like a little pager. Mine was purple. I stored it in my cleavage.

What my old pump looked like

All in all, things were fine. The pump had some scratches on it, and the tubing got kinked every once in awhile, which was par for the course. But it was working. In October of 2016, Medtronic, the company who manufactures and sells insulin pumps and the supplies, began calling me to tell me I should get a new pump. The sales rep took me through a list of questions which, I quickly realized, were excuses to present the insurance company to buy me a new pump. My answer to all of them, which were varying ways in which the pump could have malfunctioned, was “no.” Finally, he asked “Are there any scratches on the pump?” I said yes, which made sense-I had dropped it several times. “Great!” he said. “That will get the insurance company to get you a new pump.” (Read: Yay! I just sold a pump, the insurance company will pay for it, and I get a commission!)

****IMPORTANT: The American branch of Medtronic Diabetes posted NET (NOT GROSS) profits of 4.03 BILLION dollars in FY 2017. Yes, that’s right, BILLION. (Source)*****

The new pump was shipped to me, along with other paraphernalia to accompany it. This was billed to my insurance, Physicians Plus, on December 5, 2016. That previous month, during the open enrollment period for the Health Insurance Marketplace, I learned that Physicians Plus was no longer offering plans through the marketplace. I had previously been paying $88 a month with a $1500 deductible. That plan was gone, and buying insurance through them privately would cost, at minimum, $325 a month for a disaster-only plan. I went to the marketplace and joined up with Group Health Cooperative. More on that shit show later.

Nightmare part 1: $60 = $10,000; or, health insurance industry math plays by its own rules

The new insulin pump began giving me problems in May. It was burning through batteries at an alarming rate. I called Medtronic, and they sent me a new insulin pump. It had to be signed for. I was not home when the pump was delivered. I went to pick it up, and was told it wasn’t there. Mysteriously, my current pump began working again right around that time. Since I was working three jobs, and my current pump was back to functioning, I forgot to go back and pick up the new one, and it got shipped back.

Last week, on July 19, 2017, the current pump went on the fritz again. I called Medtronic to tell them I needed a new one. At that time, I was told I had a balance on my account for some supplies, which I knew about and had made a payment of $175 towards the week before. However, imagine my surprise when they told me there was also a balance of $9,308. This was, they told me, because Physicians Plus (with whom I was no longer a customer because they left the marketplace) had retracted payment for the entire cost of my insulin pump. I could not get a new pump until I paid the balance.

*****Physicians Plus, an insurance company, waited seven months and then retracted payment for a device that literally keeps me alive.*****

I called Physicians Plus and was told that I missed $60 of my premium payment in December and that’s why they pulled the payment to Medtronic. My monthly premium was $88 a month. So not even a month behind.

LET’S DO SOME MATH!
Date my new pump was billed to Physicians Plus: December 5, 2016
Monthly Premium: $88 
Daily Premium: $2.83 ($88/31 days)
Balance due for December: $60
Amount paid for the month on December 5, 2016 if daily premium applied: $14.15
Difference between balance paid for the month and balance owed for the month: $28
If you prorate the payment by days, I should still have been covered on December 5, 2016.

In December of 2016 I was performing professionally, producing a show that was traveling to libraries and schools throughout the county, also professionally, working at the other nonprofit I work for, walking dogs, completing a research fellowship, and going to grad school. All in all it was about a 70 hour work week. Doesn’t quite fit the Republican profile of the lazy government moocher, does it? But I guess it’s my fault for being lazy and missing that $60 payment.

Physicians Plus informed me that they sent me letters about this, which I don’t remember seeing. Could they have gotten lost? Of course. Could I have accidentally thrown them out? Maybe. Should a notification that $10,000 worth of payment was being retracted be sent by registered letter?? YES.

The representative at Physicians Plus told me I could write a letter requesting that I be able to pay the $60 and get the pump payment sent back to Medtronic. Could I talk to them on the phone, I asked? No, I was told. They don’t take phone calls.

I wonder why.

Nightmare Part 2: “Broken insulin pump and blood sugars out of control” not urgent enough for Group Health Cooperative

So here I am, smack in the middle of an incredibly busy summer during which I am once again working almost nonstop, with a broken insulin pump and no way to get a new one, thanks to corporate greed. Like a good diabetic, I keep syringes on hand so that I can take insulin that way.

However, if you remember from above, the only insulin I have access to is a short-acting insulin, which is the only kind that goes in an insulin pump. The insulin is called Novolog, and it peaks about 1 hour after being taken and leaves your system entirely at around 4 hours after it’s taken. What I don’t have access to is a long-acting insulin. What that means is that I need to get up in the middle of the night to take insulin, since I have no baseline to work while I’m sleeping, and that I have to take several shots during the day.

Group Health Cooperative of South Central Wisconsin is a health insurance company with its own clinics and system. Once insured with Group Health Cooperative, you are required to see their people at their clinics, which meant that I was no longer eligible to see the person I’d been seeing at the University of Wisconsin diabetes clinic.

FIRST CALL: Wednesday, July 19, 2:00pm

I called Group Health Cooperative on July 19 and told the receptionist I needed to see someone to get prescribed a long-acting insulin. I explained that my current pump was not working, there was a problem with insurance and I couldn’t get a new one, and I needed to get in touch with someone to get prescribed a long-acting insulin. I was told that the nurses have access to appointments the receptionists don’t have access to, so they would call back to get me in soon.

No call back. I begin taking insulin shots and trying to get up in the middle of the night to take insulin. I do not always hear my alarm due to another medication that I’m on for anxiety and bipolar disorder, which makes me very sleepy.

SECOND CALL: Friday, July 21, 2:30pm

I call back with the same complaint and am told the diabetes educator I normally see is out of town, so the receptionist says she will send a message to the entire diabetes education team to get someone to call me back. I again state that it is urgent, I am without a functioning insulin pump and need a long-acting insulin desperately. I am given an appointment to see the diabetes educator on August 8, three weeks from now.

No call back.

THIRD CALL: Monday, July 24, 12:19pm

By this day, I have been trying to wake up during nights to take insulin, but often miss my alarm, which has lead to waking up nauseous and sick with blood sugars extremely high.

This receptionist was quite snippy and rude. She informed me that since the diabetes education team hadn’t called me back, she would reroute the info to my primary care doctor and get one of their nurses to call back. “That won’t do any good,” I say because, as any diabetic can tell you, primary care doctors have very limited knowledge about diabetes. “Well, that’s what I’m going to do,” says the receptionist. Fine, I say. At least I can talk to a medical professional.

Nothing. THREE CALLS OVER FIVE DAYS AND NO CALL BACK.

FOURTH CALL: Monday, July 24, approximately 8pm

A family friend and well-respected doctor whom I had discussed my situation with called Group Health Cooperative and threw his title around. They told him I had only called once. Fifteen minutes later they called me. I was at rehearsal, as I am currently performing professionally again, and was unavailable.

FIFTH CALL: Monday, July 24, 10:10pm

I called back after rehearsal and spoke to someone managing the system remotely. She claimed she had no record of any of my calls. Sympathetic, she put a message through for the diabetes educator to call me the next morning.

SIXTH CALL: Tuesday, July 25, 10:42am

The diabetes educator calls me back and schedules an appointment for the next day. I am sick for most of the day again. The anxiety is causing my blood sugars to skew high.

Nightmare Part Three: $200/month for your life

I called Medtronic again to see if there was anything that could be done. If I went on a payment plan for $200 a month for four years, they would release a new pump to me, they said. But they can’t release the hold until after the first month’s payment. And I’m afraid if I begin to pay it, Physicians Plus will be off the hook. (Remember, Medtronic is the company that posted 4.03 Billion dollars in NET PROFIT).

WHY?

  • Why is our system driven by making obscene profits off of people with illnesses they can’t control?
  • Why did Physicians Plus decide it was okay to retract nearly $10,000 seven months after the fact?
  • Why did Physicians Plus feel that $60 overdue was a fair reason to retract $10,000?
  • Why did I not receive any registered correspondence notifying me that I was suddenly going to be on the hook for thousands of dollars?
  • Why are insurance companies permitted to do this, taking home obscene profits while people suffer and die?
  • Why does Group Health Cooperative get over $300 a month from me ($155 paid by me, the rest paid by the government) when they can’t even be bothered to call me back?
  • Why did it take another doctor calling on my behalf for this to go anywhere?
  • Why did my messages get mysteriously lost? (The calls were made to Group Health Cooperative at 608–257–9700, as proven below)

What kind of twisted system are we in where sick people have to fight this hard to take care of themselves? How does a person become so greedy and amoral that they feel it’s appropriate to profit off of someone else’s suffering and death? What happened to “First do no harm?”

And if you’re reading this and thinking it all sounds fine, WHAT IS WRONG WITH YOU? If you think this is how American healthcare should work, and have some convoluted idea that a free market can apply to life or death situations, then I hope this happens to you or someone you love.

I’m furious. I’ve always been a fighter. I’ve fought this chronic disease, abuse, poverty, slander, sexism, mental illness, and rampant stress. But I am out of fight. I am afraid I will become a martyr to this system. And the saddest part is I know I’m not the only one. Literally millions suffer like this.

I am grateful for Obamacare but angry that it did nothing to fix this backwards system. I am terrified of what will come when our current lawmakers attempt to undo the bill, leaving insurance companies and medical conglomerates free to do whatever they want in order to make maximum profit. And I am tired. So tired. With those around me reinforcing my fear and frustration with feeling invisible, it’s pretty easy to just slink into a corner and die.

So share this. Share this with your representatives. With your friends. Tweet your rage @pplusic, @GHCSCW, @MDT_Diabetes. People have to know. Don’t let them get away with this. I can’t resist alone, and I’ve never felt more alone in my life.

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