A Health Insurance Horror Story

I have to interrupt my happy posts about the Women’s Jewelry Association Awards for Excellence to share a friend’s personal story about the fatal consequences of not having health insurance.

The news today has been insane as Republican Senators strive to pass a “skinny” healthcare bill — the details of which weren’t announced until close to 10 p.m. tonight — that they hope won’t become law. As Indivisible Guide said on Twitter, “A bill to reshape 1/6 of the US economy that [Senate Majority Leader Mitch] McConnell wrote during his lunch break will be voted on w/o debate & in the middle of the night.” Female senators who have resisted the healthcare catastrophe that Republican men shat out have been harassed and threatened by their colleagues.

In case you’re wondering why the GOP — which blustered about replacing the Affordable Care Act for seven years and now controls a majority of the government — is desperately trying to push an on-the-down-low bill that it doesn’t even like, the short answer is “partisanship and racism.” The longer answer is that the Affordable Care Act WAS the damn Republican plan. It borrowed from so-called RomneyCare, the Massachusetts healthcare law instituted by that state’s GOP governor (and one-time presidential candidate), Mitt Romney. When the law went national under President Obama, it included 188 Republican amendments, according to the New York Times. Some of those were technical, but others were meaningful, as Slate reported in 2009. By comparison, zero Democratic amendments have been included in the GOP’s 2017 effort. So if the ACA was originally a GOP concept with ample GOP input — a practical decision for Obama, who knew single-payer wasn’t going to fly — what’s behind the right-wing’s obsessive hatred of it? Only the fact that it was labeled “ObamaCare,” for a Democratic, black president.

During the current Republican display of idiocy and immorality, Senator John McCain — 80 years old with a newly diagnosed, terminal brain tumor — proved that a broken clock is right twice a day because Trump accidentally didn’t lie when he said McCain was no hero. The self-serving McCain, blessed with good insurance and a wife whose estimated net worth was at one time $100 million, left his sickbed to vote “yes” on the GOP effort to deprive less wealthy Americans of the kind of treatment he’s receiving. The average survival rate for the glioblastoma he has is 14 months WITH treatment, and this is how he has chosen to use some of that time. (If he really cared about healthcare costs, he would skip his planned chemo and radiation and go straight to hospice. It would be thriftier and more realistic.) Facing his own mortality clearly hasn’t changed him one bit — if you don’t know how much of an asshole McCain has always been, read this 2008 Rolling Stone story. *[SCROLL TO BOTTOM FOR UPDATE!]*

Meanwhile, the hot non-healthcare news of today is the rant that unhinged and unqualified Anthony Scaramucci — the new White House communications director — unloaded on Ryan Lizza of the New Yorker. Among the highlights is this quote: “I’m not Steve Bannon, I’m not trying to suck my own cock.” I had to reread this story three times before I was convinced it wasn’t by the Onion. (Here’s the Onion’s take on it.)

A gif shared by Penguin Books sums it up best:

Getting back to healthcare, as I said, my friend Victoria recently shared a story with the goal of enlightening anyone who doesn’t understand why a lack of insurance can be deadly. It involves emergency rooms, which a lot of people imagine is where you WILL be treated no matter what. Victoria, who works in the medical field herself, points out that emergency rooms stabilize you but they don’t offer the course of treatment you need after that. That comes from specialists. If you have glioblastoma, for instance, you’re going to be referred to oncology for your chemo and radiation. Oncology is not part of the ER. You will need insurance or cash. In 1998, Victoria’s mother urgently needed a specialist for a brain aneurysm. She didn’t have insurance or cash. Here is Victoria’s own words, shared with her permission.

“This isn’t a story I enjoy telling but in the wake of the current election and facing down the barrel of the changes coming to our already broken healthcare system, I feel compelled to do so. Most of these details I recall directly; a few have been told to me by family members. Some of you have heard this before and a few of you lived it with me. In any case, this is my truth as I know it.

I grew up working class in a suburban neighborhood in New Jersey. My father was an HVAC contractor with his own small business, my mother hadn’t finished high school and didn’t work after she had me, her first child. During years that my dad’s business was doing well, we had a pretty good standard of living, but those years were few in number. Mostly, we struggled to make ends meet; sometimes we didn’t make ends meet and the lights got shut off. As a result, we didn’t have health insurance. Insuring our family of 4 would mean there wouldn’t be enough money to pay the bills or put cash back into my father’s business for supplies; in comparison, it felt unnecessary. So we went without. At times, it wasn’t pretty. The public dental clinic where I got a botched root canal, the time I had to get a shot of antibiotics in my butt because my parents waited so long to take me to the pediatrician for my strep infection that my throat closed up and I couldn’t be given liquid medication, my mom writing me an exemption note for the scoliosis screening in elementary school because it was better to just not know if there was a problem with my spine (since there was no way we could afford to treat it anyway), the time a bully stole my glasses and I couldn’t get them replaced for 6 months. These incidents were frustrating and embarrassing. These incidents are not the story.

On a Friday in 1998, when I was 15 years old, my mother went to bed with a bad back pain. The next morning she woke up paralyzed on one side. My father was already at work, I paged him and when he called back I frantically insisted he come home “Mom’s had a stroke!” I shouted into the phone. “You think I had a stroke?” my mother asked me, her voice slurred, half her face drooped. “Yea, mom, I think you did.” I called 911; my father rushed home. My 12 year old sister helped put clothes on my mother, who couldn’t walk or stand. The EMS workers came; they were kind and professional. “We are going to take care of you, Nancy, don’t worry.” “I’ll be ok, I’ll be ok” my mother said on the stretcher.

My mother was rushed to the local hospital, where it was discovered that she was suffering from a brain aneurysm. Unfortunately, this hospital did not have a neurosurgery unit that could provide the surgery she needed. She’s going to a hospital in New York, they said, where they can do the surgery to save her; she was being prepped for immediate transfer. My father and my uncle got in the car and headed north, so they could meet the ambulance at the hospital my mother was slated to go to. My sister and I stayed at our grandparents’ home, terrified and in shock. An hour later, my father received a page from my grandmother while still on the highway. He learned that my mother was not in fact on her way; she’d been prepped and stabilized but the transferred hadn’t happened. He was told to turn around and come back.

The hospital that my mother was supposed to be transferred to declined to accept her as a patient. We had no insurance; she’d have to go elsewhere. If she’d come in through their Emergency Department, they’d be obligated to treat her but under these circumstances, they were not. The local hospital told us they were looking for an alternative, probably the hospital affiliated with nearby state university. Once they found a hospital willing to treat her, she’d be transferred and get the surgery there. Until then we’d have to wait.

About 24 hours had passed since I first called 911. My father was explaining the logistics of figuring out the medical situation to my sister and me in my grandmother’s living room when the phone rang. My dad answered it but barely said anything after “Hello. Yes, this is Frank.” He hung up, went out the front door and stood out in the yard alone. When he walked back inside, he and I locked eyes. His kind, tearful, desperate eyes said everything. He shook his head slightly at me and I knew. I crumbled down into a silent pile on the beige carpet. My 12 year old sister, so attached to our mother as to almost be a part of her, demanded a verbal answer. “What? What is happening? What did they say?” And my father had to say it out loud “Honey they can’t do the surgery; it’s too late. Mommy is brain dead.” My sister screamed in a primal, terrible way I hadn’t heard before or since and threw herself onto a ball on an easy chair. We rallied around her, my uncle, my grandparents, my dad and me. “Don’t touch me.” She sobbed “Just don’t touch me.”

We went to say goodbye to our mother at the hospital later that day. She was on life support and there were a lot of machines beeping. Many people came to say goodbye, my cousins, aunts, a neighbor. I was numb and shocked; I sat on the hospital’s linoleum floor staring at the designer boots my mother had bought me that Christmas because she found them on sale at a discount store. After a few hours, my father said, his voice cracking, “Girls, it’s time to say goodbye to mommy”. We did and then we left. They turned off the machines that night. My mother was 42 years old. For several years after, I found that I could not enter a hospital without hyperventilating.

After the funeral, a social worker from the local hospital where my mother had died followed up with my dad at our house to check up on us. When my father explained the circumstances of my mother’s death, she was horrified. She suggested that we sue, that this couldn’t possibly be legal. My father stated simply, sadly “That won’t bring my wife back.” In any case, where would my father have gotten the money to hire an attorney? Shortly after, the hospital offered to forgive the outstanding 30,000 dollar medical bill, more than my father would make in an entire calendar year, incurred by my mother during the day and a half she spent dying and on life support there. I suspect that social worker, whose name I never knew, advocated on behalf of our family to the hospital.

My sweet dad couldn’t handle the burden of it all. Who plans to be a widower and a single father to two grief-stricken adolescent daughters? He became depressed and spiraled into heavy drinking. Three and a half years after my mother’s brain aneurysm, my father died of liver failure. He was 49. I had no parents attending my wedding and my children have no maternal grandparents. The effects from this event have rippled through all aspects of my sister’s and my lives and, for better or worse, shaped the women we ended up becoming. I don’t know if my mother would have survived the surgery the doctors recommended, but I do know she was never even given the chance.

I work in health care now, as a psychologist in a public medical clinic. My life is comfortable, happy, and safe; I am very privileged. Some days it’s easy to forget exactly where I came from. My children, husband and I have excellent health insurance through my job thanks to union bargaining. I love my work and I feel I am good at it but often get frustrated at the inequities of our system. Just last week, I was ranting to a sympathetic friend about how unfair it is that my clients can’t access the cream-of-the-crop specialist physicians that I can because they are on Medicaid and how broken and unjust this tiered system is. And then the election results came in and I remembered who I am and thought “Oh no. This can get much worse.” All of a sudden it feels like 1998 again.

So please, when you talk about rolling back the meager health care benefits currently available to low income people or closing low-cost clinics, keep this story in mind. This isn’t just a budget or numbers, it’s human lives. It was my mother’s life.

UPDATED JULY 28, 2017, at 1:36 A.M.: The GOP lost the vote on its “skinny bill” thanks to three Republican Senators voting no: Lisa Murkowski of Alaska; Susan Collins of Maine; and McCain of Arizona, who did the right thing for the wrong reason. The outcome doesn’t lessen my disgust at the way he was eating up the attention from both sides tonight (so much more fun than when everyone hated him in 2014!), considering the reason this vote took place was because, on Tuesday, he decided to let it go forward instead of blocking it.

And what will he do in return for maximum publicity when the Republicans push yet another version of their anti-insurance bill? That could be next week for all we know. I don’t think this is the end of the battle. With healthcare off the table, attention might turn to the Russia issue, and no one in the GOP wants that.

UPDATED JULY 28, 2017, at 7:11 P.M.: This Paul Krugman column, published by the New York Times before last night’s vote, describes McCain’s personality and behavior.

Krugman wrote:

“McCain has been a crucial enabler of the Senate’s shame — and a world-class hypocrite to boot. On Tuesday, he cast the decisive vote allowing this whole process to proceed, with no Democratic votes. Then he gave a sanctimonious speech denouncing partisanship and divisiveness, and declared that while he voted to allow debate to begin, he would never vote for the existing Senate bill without major changes.

And later that day, he voted for that very bill, even though, you guessed it, it hadn’t changed in any significant way.”

There’s more. Definitely worth a read.