Her Name Is Pixie: My Sister’s Fight For Survival In The US Healthcare System

Her name is Pixie. Well, it’s actually Elizabeth, but for as long as I can remember I’ve called her Pixie. She’s my little sister, born when I was 4 years old. We were as different as night and day, but our Mother dressed us alike for years. We played together, slept in the same bed, and grew up as the two youngest in a family of six children. We were still in school when our parents retired, so we moved with them from the big city to a farm outside a small town. We helped milk cows, fed the pig, planted gardens, canned vegetables and rode the school bus together. We shared confidences, fought as all sisters do, and had each others’ backs when necessary.

We grew up, married and gave birth to 7 children between us. We now live 7 houses apart, which is a wonderful thing. We talk daily, do things together, and share our joys and sorrows. Most of the time this is a blessing. However, because of one mistake made by a medical professional, I now have a ringside seat to the battle my sister is waging for her life. I, the big sister who could always fix anything, feel helpless. My little sister, through no fault of her own, has been thrown into a never-ending cycle of daily medical care, painful procedures, illness and mounting medical debt.

Four years ago, Elizabeth had neck surgery. The surgery itself was a success. Upon discharge from the hospital, she was prescribed the wrong medicine by a physician assistant covering for her doctor’s partner over the weekend. Unfortunately, by the time her surgeon realized what had happened, the damage was done. Her adrenal glands were permanently damaged, and she now has no adrenal function. None.

If you aren’t aware, adrenal glands (located at the top of your kidneys) produce hormones which help the body control blood sugar, burn protein and fat, react to major illness and injury and regulate blood pressure. Without them, the body goes into shock and you die.

As a result of having no adrenal function, she is now on daily steroid therapy for the rest of her life. Taking steroids daily has wrecked her teeth and bones. causing her teeth to literally break off at the gum line (even with no cavities). Taking steroids daily has caused her to develop chemically-induced diabetes, and she is now insulin dependent. Taking steroids daily has suppressed her immune system to the point that she is now prone to serious infections which her body cannot fight. Case in point … she was just released from an 8-day stay in the hospital for an infection in a small wound on her leg that ballooned out of control.

I describe these things not for you to pity her, but to give you a snapshot of her day-to-day existence. She takes massive amounts of drugs to keep her body in balance. These drugs do the job that her adrenal glands were supposed to do. These drugs aren’t cheap. There are some drugs she should be taking but can’t because she cannot afford them. One drug alone costs over $400 a month. The IV antibiotics they wanted to discharge her on cost $5,000 a dose, with a $1,000 co-pay. Yes, you read that right  — $5,000 a DOSE.

Needless to say, she was not able to follow through with that treatment. Do you know anyone who could?

She is a Medicare patient. She has now fallen in the lovely Medicare coverage gap, affectionately referred to as the Medicare ‘donut hole’. Describing this phenomena and its financial ramifications is enough to make your head explode. A patient in the ‘donut hole’ is responsible for 100% of the cost of their prescriptions until the total you have spent for your drugs reaches $4,550. Then Medicare will start covering her prescriptions again.

Elizabeth’s husband, Mike, a high school teacher, makes enough for their family to get by. He makes just enough for her NOT to qualify for drug company patient assistance programs. He tried to add her to his employer insurance, only to find out that the premium would be $600 per month.

My sister is sick. She is sick because a health professional made a mistake. Not a litigious person, by nature, she finally consulted with an attorney, only to be told that because she didn’t have any ‘lost wages’ to sue for, the case wasn’t worth it to him. Incredulous, she asked another attorney, and another … and another. She has over $500,000 in medical expenses to date, but because no attorney thinks it’s worth his/her while, she has no hope of ever receiving any relief from the scores of debt collectors and collection agencies and the ever-accumulating mountain of medical debt.

The wrong medicine. She was given the wrong medicine, and as a result, Elizabeth went from a fully functioning member of society with no medical issues, no daily medications, no pain and no infections to a woman who is hanging on basically out of sheer stubbornness (a family trait we both inherited).

What’s even more concerning is that she is not alone.  Hers is not a unique story.  She is one of millions in this country with either no health insurance or poor health coverage. She is forced to choose between food for her table and medicine.  She is forced to choose between paying a utility bill and medicine. If she lived in any one of the numerous countries who have universal health care for all citizens, hers would be a different story. But it’s not.

She lives in the best country in the world, where we are all one medical mistake away from absolute catastrophe. When is it going to change?

If you’d like to help Elizabeth, her husband has set up a Go Fund Me page to help with the cost of her medical care here: gofundme.com/2bsptxac

Anything would help; even a dollar or a kind word. Thank you for reading. 🙂

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