My friend A.
This is an open letter to every Republican political leader, but particularly to the following Texas political figures: Gov. Greg Abbott, Lt. Gov. Dan Patrick, Attorney General Ken Paxton, Senator John Cornyn, Senator Ted Cruz, and Representatives John Carter and Michael McCaul. It is also addressed to President Donald Trump, Vice President Mike Pence, HHS Secretary Tom Price, Senate Majority Leader Mitch McConnell, and Speaker of the House Paul Ryan. These are entities highly unlikely to respond, but I feel compelled to get this out to them because they are all of them implacably committed to repealing the Affordable Care Act, frustrating the implementation of the Affordable Care Act to the maximum extent permitted by law, and to replacing the Affordable Care Act (and the other myriad patchwork laws that govern our health care system) with something that every expert, including the Congressional Budget Office, confirms will lead to more uninsured people. They want to do this, they say, in the name of “freedom.”
I could cite charts, graphs, analyses, white papers, all of that. Ultimately, none of that is likely to change these people’s minds because they occupy a different factual universe. So I’m not going to ask them to defend their policy prescriptions against these critical evaluations. Instead, I’m going to ask them how the “freedom” they seek is going to help my friend A.
I’ve known A. for six or so years now when she joined our church. At that time, A. had a pretty decent life. Two great kids, a nice big house, a seemingly stable marriage. About a year or so after I first met her, she became pregnant with her third child. She stayed at home and tended the kids, while her husband worked. All the things that people that the political leaders named above will cite as the keys to success — that if only those poors would just do all those things, they would stop being poor.
The two biggest drivers of financial calamity in the United States are divorce and medical expenses. I want you to remember that as we go through this story.
Shortly after giving birth to her third child, A. discovered that her husband had been having an affair and no longer wanted to be married to her. The marriage ended, the nice house was sold, and she and her daughters were forced to move into a smaller home. Although her husband did provide financial support, they still struggled to scrape by. Moving to a place where she had more family support to provide assistance with the day-to-day tasks was not an option — her divorce decree required her to stay in Texas. And with an infant, working was going to be a challenge, as child care costs would likely consume any money she could earn.
A few years later, it was discovered that one of her children had a severe gluten intolerance. So their house had to become completely gluten-free. Perhaps the political leaders named above don’t know this, but being gluten-intolerant is not a choice, and living gluten-free costs more because the basics of life cost more. This caused even more financial hardship.
And now, more recently, she was diagnosed with a particularly nasty variety of breast cancer. Now, in addition to her existing financial issues, she has the costs of treatment.
And life keeps happening. Because life doesn’t wait until you’re cancer-free. It doesn’t take a break while you recover from chemotherapy. It just keeps happening. I’ll let her tell it from here:
“My AC’s been broke for two days, Supposed to be fixed tomorrow. For $500. It’s hot in here.
My brakes are screaming on my van. Again.
My microwave died too, over a week ago. Finally broke down and got a new one after determining that just having mine looked at would cost more than a new microwave. New shitty microwave cost $250.
Found out today that the surgery I’m supposed to have on Monday is at an out-of-network hospital so I have to cancel that and start over, finding a surgeon who has privileges as a hospital that I can go to. So I get to live with this scary effing lump in my arm (which all my doctors say they “don’t like” which is FUCKING HORRIFYING) for longer.
The ultrasound I had of this lump last month was also — surprise — not covered. That cost me $500.
I had to start a payment plan for an $800 mystery charge for a something-or-other that I need to track down because the date of service on the bill is not a day I had any appointments. And the description is an undecipherable code.
Found out today that my radiation oncologist is actually NOT in-network. Though the doc she shares the office with IS. My one consult with her last month cost me $700.
There are no certified lymphedema specialists that are covered by my insurance. My last visit to mine cost me $400. Had to spend $100 this week on lymphedema compression sleeves for my arm.
Still owe over a grand for my surgery which was mistakenly not covered at all and they tried to bill me $13,000. I still supposedly owe $11,000, but someone is trying to do something about that for me.
All of this after each and every office says they verify insurance and that it’s the last thing I need to worry about during all of this. Thanks, guys for doing such a bang-up job verifying my coverage for me.
Now I’m checking every doc and every appointment myself. But it was impossible to do when I was new to this.
It was impossible to do when I was too sick to move and on days I’m too scared to function, days when my kids are sobbing and talking about things no child should be contemplating. I was overheard on the phone today and E. [one of her daughters] brought me a handful of change to help. They’re gonna have a pink lemonade stand to raise money for medical bills. And that is somehow lovely and horrific. it makes me equally proud and humiliated at the same time.
All of this is after meeting my $6,074 deductible for the year and paying almost $500/month in premiums.
My income last year? Less than $35,000. Which is not low enough for a family of four to qualify for help in the great state of Texas. I’ll let you figure out what I’m left with after insurance deductibles, premiums and medical bills to actually clothe and feed and keep a roof over my family’s heads this year. (hint: not enough).
I do not know what I’d do without my community. I don’t know what I’d do without the gift cards and donations I’ve received. This year is insane. The expense is enormous for anyone to manage. Let alone a family like mine.
I don’t know how I’m scraping by or how I’m managing to keep my head above water. But I am. I’m paying my bills. I’m replacing what breaks. I’m feeding my kids (stupid expensive gluten-free food). I’m paying for braces and starting to work on school supplies for next year. I’m doing it. I’m getting by. I don’t know how, but I’m making it work. Largely thanks to you guys. Your support and love and help is getting me through the year. Assuming I get to live, D. [youngest daughter] will start kinder in one more year and then I can pick up more work. Childcare is way too expensive until she’s in kinder.
Anyway. I don’t know how I’m doing it. But I am. I credit all of you with that feat. But I’m just so livid that this is the state of things. Something is so wrong and broken when this is what cancer does. When this is how we are “taken care of”.”
Let me be clear to the political leaders named above. This. Is. Not. Fine. She says she is managing, and she is, with far more grace and good humor than I would be able to manage under similar circumstances. She is one of the best people I know. And I have tried to help her as best I can. But there is only so much I can do.
But you, political leaders named above, you have the power to make her life better. You could agree to the Medicaid expansion under the ACA, which would help with her health expenses. You could recognize how stingy the social safety net is in Texas and make it more generous to reflect the economic realities of the state. You could do any number of things to make her life better. What you have done, historically speaking, is pursue policies to affirmatively make her life worse. In the name of an ephemeral “freedom.”
So I ask you, political leaders named above, how will the policies you are pursuing make A.’s life better? How will the “freedom” you deem so important as to sacrifice what little progress has been made on improving health care help her pay her medical bills, put food on the table, get braces for her kids, or pay for the basics of her life? Medicine and microwave ovens can’t be bought with “freedom.” They require dollars. Dollars that you have been unwilling to vote to provide because you believe in a “freedom” that is more important than giving a sick mom the best chance possible to live for her kids.
She has too much going on in her life to engage with you. So I will ask you — what are you doing to help my friend? Because from where I am sitting, everything you are trying to do will make her life worse.