Say what you like about socialized medicine in other countries, but what we have in America is a travesty. The rich (insurance and pharmaceutical companies, and collection agencies who buy medical debt) keep getting richer, while anyone who gets seriously ill is at the mercy of the rich. I heard so much squawking from relatives when the Affordable Care Act went into effect because they suddenly had to pay insurance premiums (instead of just floating along pretending they would never get sick). Granted, the Marketplace was lousy and premiums were high, but it was a step in the right direction.
Today I’m very triggered by the piles of medical bills that keep hitting my mailbox. And now the phone calls are coming from the billing offices, despite the fact that I paid all the bills that had come in so far last month. The latest ones are from mid-June onward. These folks get my voicemail. I hope they enjoy the Darth Vader theme song while they wait, because it’s appropriate. I don’t have any choice but to keep going to my appointments and having procedures and chemo, because otherwise, I’ll die. I feel like Darth Vader has me by the neck sometimes.
This all makes me think of what happened with my precious daughter.
Since about 1990, I’ve always had health insurance, but there was a time (before the healthcare changes took place during the Obama administration) when my daughter — who suffered from multiple health conditions — did not. When she turned 18 and was no longer in high school, she was off my plan. That was the law at that time. During the time she was in college (which was spotty, and which she never finished), we were able to obtain health insurance for her through the school. It provided for catastrophic events, at the very least, which gave us all a little peace of mind.
But in late 2008, it all began to fall apart. She was no longer in school. In fact, she was in and out of the hospital’s psychiatric ward, dealing with her severe bipolar disorder. As a family, we did all we could. We covered her rent and other monthly bills. We took in her cats. We dealt with her horrible roommates. We did what she would let us do, which was never enough. Her illness meant that she often shut us out and maligned us. We helped anyway.
In the spring of 2009, she finally decided to try and get certified as disabled, as least for insurance purposes. She had not held a steady job in years, had not finished school, and had no prospects. Given her high IQ and potential, it was tragic that she could not function like the average person in society. It was just something she couldn’t do. I told her that we would pay to send her to the psychiatrist to start the process, because of course we would! We wanted her to survive and eventually succeed. The hope was that getting a certification from the psychiatrist would mean I could put her back on my insurance plan as a dependent. We were paying 100% of her living expenses.
When she came to the house that day, she wore an air of depression and a little desperation. Her eyes were downcast. The chill March wind blew her sweater away from her, and her long black hair spun wildly around her face. One of her friends from AA drove her. I wondered where her car was, but I knew she’d never tell me. (Turns out it had been impounded because she left it for several days in a downtown parking garage. Her dad retrieved it to the tune of $4000 a month after she died.)
“The doctor said I will probably never be able to fully care for myself,” she said. I could tell that hurt her.
“That’s what he needed to say,” I tried to assure her. “Maybe that’s what the insurance companies will listen to.”
She handed me the paperwork but wouldn’t come in. I didn’t know it was the last time I would see her.
I completed all the forms and submitted a request to Cigna to add Stephanie to my policy as a disabled, dependent adult. Then we waited. Meanwhile, Stephanie withdrew further and moved into an apartment with some people she knew in downtown Frederick. The last weekend of March, she was mugged and hit over the head repeatedly with a bottle. They never caught the person who did it, but I honestly don’t think they really tried. She survived but decided to go to another friend’s house in Urbana, to get out of Frederick. (To be clear, she was always welcome at home, but she chose not to come home.)
At noon on April 3rd, the police came to notify us that our daughter was dead. She had died of a drug interaction between her psychiatric medication (which included Ambien) and the pain medication she was given at the hospital after the mugging. It was the worst day of our lives.
The following Monday morning, I received a call from Cigna to tell me that they would not consider her a dependent adult, regardless of what the doctor said, and would not provide coverage. The woman on the phone sounded a little too blasé about the whole thing.
At her, I screamed, “Well, you and the fat cats at Cigna don’t have to worry about covering my daughter, because she is dead!”
The woman babbled and sputtered and tried to apologize, but I wasn’t having it. She got to listen to my full complaint before I slammed the phone down. If it were you, I daresay you would have done the same. It was unconscionable that my daughter — who had severe bipolar type I, lupus, and antiphospholipid antibody disorder (and probably Ehlers-Danlos, though that wasn’t on our radar at the time) — was denied healthcare coverage. To have it denied in such a way just days after her death was the ultimate slap in the face. To have the insurance company act like healthcare was something for people who weren’t sick and who had plenty of money sent me through the roof.
When the law went into effect letting children stay on their parents’ policy until the age of 26 (Stephanie died shortly after she turned 25), I wrote to President Obama and thanked him on behalf of all the families who would benefit, though it was too late for ours.
It’s just been a very rough day, and like I said, it has triggered my anger and sadness about what happened to my child. My other child, my son, is helping me in every way possible, including living with me, paying me rent, taking me to appointments, and making sure I have something to eat. He wants me to live through this cancer. I’m doing my best, but on days like this, I have to wonder whether I’ll have any financial resources left when it’s all over – and I’m one of the lucky ones.
At the infusion center the other day, I heard a financial counselor talking with a fellow patient about programs to help pay for his treatment and help with things like keeping the electricity on at his house. She was asking if he knew the amounts for each bill he had due. I was just horrified that in our society, we have to have such programs. We’re one of the richest countries on earth, but people have to choose whether to pay their normal household bills or pick up the anti-nausea medications (or even show up for treatment). The poor guy was so nauseated that he had his eyes closed and was asking for help from the nurse. The financial counselor finally said she would leave him her card, because clearly he was in no state to discuss the matter. It broke my heart. I could tell the counselor was struggling, too. She obviously had a heart.
Bring up healthcare for all on any given forum and the crazies will come out of the woodwork, saying “That’s socialism!” Blah blah blah. I’d like to get into a room with those people who hide behind social media. I would give them an education! Healthcare should be a human right, not a privilege. It’s one of the things we have done SO WRONG in this country. A person should not face financial ruin because they get sick. I will be okay, but I’m not so sure about the gentleman I saw the other day. I wish him well and I am praying for him.