From the Edge of Darkness: 2

Trash Can, c Charley Freiberg

Woe,

the ACA

Sometimes we can’t really understand something unless we’ve lived it ourselves or are close to someone who’s living it  – and there’re a lot of experiences out there that we mostly don’t live, thank the gods. Without the experience, though, it’s hard to think the details of some things through, and while we might have an intellectual empathic reaction and response, we might not, as our politicians generally don’t, actually get it.

It surprises me - being a person who grew up in the dark ages when most folks were pretty poor, and even the rich folks around us weren’t that much better off (except for the summer folks, who came from places where they somehow acquired more money than they knew what to do with) - how much money most people have nowadays. I listen to folks whining about how much the ACA (Affordable Care Act) is costing them – heavens, suddenly their health insurance is costing them so much they can’t go on that exotic vacation they were planning! – and, because I’ve never had that experience, I really can’t feel their pain OR muster any sympathy for them. Instead, I tend to think, “Welcome to the real world.”

A bunch of years back, The Boston Globe Magazine published an article that looked at how local colleges were promoting, and handling, diversity amongst their students. We’re used to thinking about diversity being cultural or ethnic, but the article reminded us that diversity is also found in financial strata. That year, some of the grander schools had realized they needed to include in their classes students that really couldn’t afford to be in those particular colleges, as well as a variety of students of color, lands of origin, cultural backgrounds, and so on; and that they needed to put the in-coming freshmen through introductory meetings so they could get to know each other and learn about each others’ backgrounds, the goal being that then, as a group, they could understand and support each other better. The description of the meeting that stuck in my memory was one in which they put together students from a variety of financial backgrounds. One student told his group that he was from a family of four from northern New England that had an annual income of less than $25,000.

The rest of the students called him a liar. No one, they believed, no one, in the US made that little money. An individual couldn’t live on so little, much less a family.

That year, the Husband and I made a grand total of $12,000: combined income.

Many years later, we are much richer. Nowadays, our combined income hovers somewhere around $20,000 – most years. Bad years it’s less. There are no better years.

Fresh out of college we used to laugh about how little we made for how hard we worked: when, we wondered, would we start earning an adult salary? It hasn’t happened yet.

There was one brief, anomalous year, when I was a “freelance employee” of Digital Equipment Corp., in which I earned something like $40,000. Fortunately, that was the year the Husband and I were also building our house – literally, we were building it – and we were building it because we couldn’t afford to buy one or hire someone else to build it – so working for Digital, though it provided no benefits because I was “freelance,” enabled us to finish buying materials, and we bought the only couch and 2 easy chairs we’ve ever had enough money to buy. Literally. The Digital cash cow came to a close the next year, when my grandmother was dying of cancer. This predates hospice facilities, but it wouldn’t have mattered because we live 30-plus miles from the nearest city large enough to have a hospice, anyway. Someone needed to be her night nurse, and I, being a freelance editor and writer, was the one in the family most able to stop working in order to care for her, then pick up more freelance work again later. 

[As a related aside, I’d like to note here that whoever, in government or the healthcare world or the health insurance world came up with the idea that’s now a given, that in-home care of seriously ill or dying patients is a great idea, is living in a fantasy world. Yes, absolutely, it’s better for the patient; yes, absolutely, it can be a rewarding experience for the family member who takes on the job; but just as absolutely, and probably more often than not, there isn’t a large family living locally who are all either rich enough or have flexible enough jobs to take on and share such stressful, exhausting work  - work that can go on for unknown periods of time – or who have the personal characteristics that make such work anything but a frightening and mind-numbingly draining job. Modern families don’t have the knowledge or support to do it – and such work, though blessed, can destroy the care-giver’s ability to make a living, their finances, their family life, their health, and their peace of mind. If this is the direction we’re going as a nation on this – and it seems we are because it relieves the strain the professional healthcare businesses are in, as far as shortages of caregivers and space and salaries go - we need to rethink how those family members are going to be supported, and do so in a way that addresses each individual circumstance – financial, emotional, energetic, health-sustaining, and take into consideration all other responsibilities that caregiver may simultaneously have. As a family member who has taken on this responsibility twice, I can tell you that most people, in most circumstances, couldn’t do it and shouldn’t be expected to do so. It takes a village – literally. I was lucky to have that support – in the first instance, because my grandmother was a nurse and could guide me in her own care; and in the second, in the available and willing hands of local family and helpful others; and I was lucky to have a job I could suspend for whatever the duration turned out to be, no children of my own who needed attention, and a mortgage that was already paid off. Most people’s circumstances are much different from mine, and the 2- or 3-month “family leave” we’re so proud of – which isn’t universally available – is laughable, and useless anyway to people who don’t have plentiful savings that can fill in while their salaries are in suspension while they’re on leave.]

The Husband and I have had lots of jobs, often all at once. We’re both professionals – I was a writer and editor for many years before becoming a practitioner of Chinese medicine; he’s a photographer who also has worked as an editor and teacher. Mostly, we worked in the computer publishing industry. During a very few of those years, we had employer-paid health insurance; most years, no health insurance; and when we finally gave up working for other folks because we could make as much working for ourselves, for awhile we bought “catastrophic” health insurance policies for a few hundred bucks a year. For many years, those kinds of policies were inexpensive, and would have helped had we had a catastrophic health issue. But then the insurance industry got its hands slapped for bad business practices, and those once-cheap policies became 'way too expensive for folks like us. So we made do with accident insurance policies from AAA, and when we needed some other kind of health care, we paid for it ourselves, over time  – including when I needed a hysterectomy.

I want to share with you who “folks like us” are – because I think you’ll be surprised. We’re people who have only once had a new car, bought back when a new car could be had for $3000, we had no mortgage, and rentals - way back then - were cheap. We don’t have cable service at our house, because we can’t afford the ridiculous rates that are charged. We make do with much cheaper Netflix accounts and internet connections – which we have only because we both need reliable computer access for our work. Our cell phones – again, needed for our businesses – are quite old flip-phones. We have the cheapest service available, which doesn’t include texting, internet connection, etc. Even so, it’s more money than we can comfortably pay, especially since we never use even half the minutes we’re paying for monthly. We have old cars which work, partly because my generous Brother lets us pay for repairs a bit at a time. Our winter boots are a decade old or older, as are our coats and shoes; we rarely buy clothes. A generous friend has given us several pieces of furniture that she wanted to replace; the Husband built our beds, and we sleep on slabs of foam, which are much cheaper than mattresses. We fill freezers full of the vegetables we grow in the summer, and we eat every bit of them during the winter. We make our own butter, bread, meals, and rarely eat out. The last actual vacation we went on – not counting two overnights after my father died and left us a little money that otherwise has gone to replace old, leaky windows – was 33 years ago – we went to Nova Scotia for a week. Twice a year, we take a day and go to Montreal or to the seashore. We’ve been out to the movies twice in the last 10 years. Our savings are so minimal we could live perhaps a month on them, maybe two if we cashed in our laughable IRAs. And we have so little, and we rarely spend any, because we don’t have money left to spend or save, once the bills – which most people would consider minimal – are paid. 

We’re self-employed, but both work more than one job. I’m an acupuncturist, teacher, writer; the Husband’s a photographer, teacher, musician and also works for a friend whose work sometimes requires an extra body.  The jobs we do for other people are some-times jobs, and they’re very part-time. The jobs we do in our self-employment provide income that goes up and down outside of our control – it depends entirely upon how many people want our services and can pay for them. And we each contribute to the good of the community: the Husband helps out at voting time at the town hall, and he has helped many struggling artisans get a start by providing promotional photos at cost; and I treat a certain number of patients every year who could otherwise not afford treatment, for free or for whatever they can afford. We contribute food items to local food banks, and donate gently used clothing to local groups that distribute it to folks who are in desperate need. In other words – we’re poor/we’re rich compared to others, and we, like most poor people, share what we have with others. And, yes, there have been years when we made so little income that we paid no taxes (got that, Donald? We paid no taxes because we actually made too little to owe any, not because we had lawyers and accountants who were paid to make it look like we owed nothing.).

The ACA arrived just as we were getting to the ages when it becomes scary if you don’t have health insurance. The first year of the ACA, the policy we could get – free, which was exactly what we could afford – didn’t cover much care, but at least we knew we could go see an MD if we needed to, and some important tests and so on that weren’t directly related to an accident (inexpensive accident insurance, remember?) would be covered – which was more than we’d had for most of our lives. The next year, because of the ACA, NH expanded Medicaid, and we were bumped into the Medicaid system because we earn too little to stay in the ACA system. Medicaid’s a pain in the butt and very time-consuming to deal with, but it’s free, mostly, and it covers more than our ACA plan did.

ACA plans aren’t great plans, if they’re the free ones; but they’re a plan, and they cover some basic stuff – not because the insurance companies have big hearts, but because the ACA law forces them to do so. Without the ACA, we wouldn’t have qualified for Medicaid, which wouldn’t have been expanded to include folks like us, in our state. So you can say that the ACA has improved our health care possibilities tremendously. Last fall the Husband got old enough to now be on Medicare – so he can sort of relax. That won’t happen for me for another 5 years. I’m luckier than most – as a Chinese medical practitioner, I can care for my own health to a large extent, and I’m blessed with good friends who are also in healthcare who are generous with their skills and knowledge; but woe is me if something happens that requires the speed and intensity of western medicine.

Politicians made a mistake when they didn’t create a one-payer health insurance solution. We – this rich, rich country of ours – can afford a one-payer system, if the rich folks, and businesses that make their stockholders stupidly rich, would step away from pure greed and pay their fair shares for a change. But we – the poorer folks, the ones with no pensions, no retirement savings plans, and only a couple thousand dollars in savings that we’ve struggled to maintain against the drain of fixing aging house infrastructure, hugely expansive costs of decent food and of utilities and cars and, in NH, ridiculous property taxes  – we, the folks who literally live from one paycheck to another, who can’t afford vacations and never have been able to, who will need to work until we die or become too ill to continue; we, who don’t spend money we don’t have on cable service, new phones, new computers, computer games, movie tickets, restaurants, summer homes, new cars, new kitchens, new anything unless we have no other options – we can’t afford health insurance, and we can’t afford medical bills in the modern health care world - not even to maintain reasonable health, unless there is a free health insurance option. It really, truly, comes down to this: housing, food, transportation to work, and utilities have to be paid regularly, and if they aren't, health care doesn’t matter. There’s not enough money to pay all of them, and there’s no chance in hell we can regularly come up with the huge amount of money health insurance or health care costs – and so we go without for as long as possible. It isn’t a matter of making more responsible choices: that argument only applies when people earn enough to have the freedom to make actual choices. Vacation or health insurance? That's a choice. Rent or health insurance? That's not a choice. Neither is replace the furnace or health insurance; or replace the car that no longer runs or buy new tires to replace the threadbare ones, or health insurance; or a hundred other such quandaries.

So yes, the ACA needs fixing; but the way our current politicians are likely to “fix” it will probably mean that I won’t have health insurance again. And I won’t be the only one. (And let's not even broach the topic of dental health!)

Two years before the ACA was passed, I heard from an old college friend, who called to tell me a mutual friend from college, a lawyer, had recently died. She had quit her job a number of years previously to take care of her mother, who had cancer and Alzheimer’s and needed full-time care – and who was poor, so that care needed to come from her kids. Our friend was the most well-off and had the most replaceable job amongst her siblings, so she took on the care of mom; she was, in fact, the only kid who could do it, because the others were barely getting by, themselves. Our friend, though a lawyer, was not earning enough to pay for someone else to take care of mom, but she did have some savings put by and she expected it would all work out just fine; but by the time her mother passed on, my friend had spent all her savings on her mother’s health care and basic needs and her own living expenses. She slowly was forced to give up her own life: she lost her home, lost most of her business contacts, and developed several health issues of her own, which were severe enough that she couldn’t go back to work after her mother died. By then she was very poor, and no longer had health insurance. She had pretty much lost her eyesight, so was legally blind; and her undiagnosed and unchecked diabetes had run rampant through her organs and limbs, so that she was having heart problems and could walk only with a walker. By then, she needed full-time care, so she moved in with her sister.

One night, our friend was apparently having a heart attack. Sis lived in a part of the city that taxis, and ambulances, and even police tried to avoid; so she bundled her now essentially blind sister into a car and raced her to a hospital. By the time they arrived, our friend couldn’t walk, so Sis ran into the emergency room to get a gurney and help to get her sister out of the car and into the hospital. The hospital staff wouldn’t come out to the car, and they wouldn’t let Sis take even a wheelchair from the hospital to the car unless she could first produce a health insurance card, which our friend didn’t have. Sis begged them – my sister can’t walk, she’s blind, she’s having a heart attack, please help me get her inside! – but the staff was adamant: we don’t take charity cases, you need to drive her across town to another hospital, that does take charity cases. If you get her inside here we’ll stabilize her, but then we’ll send her to the other hospital for treatment. And no, you can’t use one of our wheelchairs, and no, we won’t help you get her inside.

By the time Sis stopped begging for help and ran back to the car, our friend had died.

People say to me, that couldn’t have happened. Not in the United States. Not nowadays. But it did; and it can; and it does. Private hospitals – ones that don’t accept any federal monies – can refuse uninsured or Medicaid patients (Medicaid reimburses hospitals and healthcare providers at much lower rates than are usually charged.). They have a duty and obligation to treat someone who enters their premises, but only to the point of stabilizing them; and as we’ve seen, these hospitals have ways of keeping uninsured patients outside their buildings.

This is a long, long article, and I thank you for having read through it. And yes, besides being a very personal story, it’s about politics. Today – the day we swore Donald Trump into office as President – is the day he said he’d put an end to the ACA. We all know it can’t happen that quickly, though that may have come as a surprise to him, but for two months the Republicans in government have been chortling with glee, rubbing their hands with enthusiasm, and yammering on and on about how they’re finally going to immediately get rid of the ACA; and replace it, they say, but they don’t say when, and they don’t say with what. If things go as they usually do when modern Republicans get a chance to mess with things that help helpless people, it’s going to wind up being something that, for folks like us, costs too much to have, doesn’t provide even basic health care, and in some twisted way will save rich folks a bunch of money – or make them think it has.

Don’t let them do it. The only acceptable change is Medicare for all – as it should have been, from the beginning. Stand up and shout. We need to be a nation that puts the basic  well-being of our citizens first – and doesn’t protect the financial excesses of a minority of citizens, nor even the desires that reasonably well-off folks may have for exotic vacations. Not until everyone is well-fed, and housed, and cared for in their bodies and in times of essential human need.

I am one Witness.

Written for the blog, January 20, 2017, from the Edge of Darkness.