We are once again in the annual Medicare enrollment period, when those of us on the government-funded, single-payer plan known as Medicare can change plans.
So, a word of warning. For-profit insurers are trying to privatize Medicare for their own benefit. They are selling what are called “Advantage” plans, which offer no real advantages to consumers.
If you’re on Medicare, you’re getting dozens of emails, phone messages, texts and glossy snail-mail demanding your attention. Free gym memberships! Free vaccinations! $0 premiums!
It’s all smoke and mirrors. The ads will have you believe the plans are part of Medicare. They are not.
Don’t be swayed by a gym membership or low- or no-premium plans. Private insurers will make money by covering fewer things, in dramatically narrowed networks. With Medicare, your doctor is covered. In addition, you don’t need referrals, and you don’t have to worry about pre-authorization requirements or a denial that could cause a fatal delay in care.
Private insurance companies care only about profits; Medicare doesn’t make a profit. In fact, it spends more than 95 percent of the money it takes in on direct care; insurance companies had to be forced to spend no less than 70 percent.
What we need is health care that’s affordable, accessible and whose terms are clearly spelled out, and as confusing as Medicare can be, it is always better than a for-profit plan.
Private insurance companies are known for their obfuscation and out and out lies about their coverage. They won’t mention the narrow networks, or the steep copays and deductibles, the short pharmacology list or any of the other ways they will part you from your money.
They have to make up for what they give you. It’s simple math – if they don’t make a profit, they don’t exist.
I was getting gas yesterday at Sam’s Club, and the pump next to mine malfunctioned. The attendant, a middle-aged man who needed to see a dentist, came by to fix it.
“Be careful to keep your windows closed when you leave Sam’s,” he said. “There are homeless people reaching in and grabbing stuff at the light there.”
He pointed at the exit.
“Right there, they’re just grabbing stuff.”
“Desperate people do desperate things,” I answered. “Thanks for the warning.”
He laughed and said desperation was what drove him to take this low-wage job, being outside in all kinds of weather, helping people who likely are annoyed at any delay in getting gas and eager to get on to more pleasant tasks. He probably takes a lot of verbal abuse.
“I’m thankful I have a place to live,” he said. “It isn’t much. It doesn’t have heat. But I stay dry.”
I told him I lived in a house in Massachusetts as a kid that had no central heat and no hot water. We had a woodstove. He told me his place is small enough to heat with a little electric heater. We chatted a few more minutes before the pumps got busy and I needed to move.
I thought about him being a bit judgy at first, as he told me to be careful of homeless people. But as soon as I said, “Desperate people do desperate things,” his face softened.
There but for the grace of God and all that.
Except God doesn’t cause people to be poor or homeless or sick with no access to health care. That comes from public policies that impoverish people, like an insufficient minimum wage, allowing corporate landlords to overcharge for crappy housing — hell, allowing corporations to own a quarter of all housing units in the first place — allowing health care providers to let people die rather than care for them, allowing insurance and pharmaceutical companies to make obscene profits while poor people suffer and die.
It isn’t the grace of God that allows any of us to fare better than others, it’s privilege, luck, and greed. God isn’t all about making people go hungry because you won’t agree that everyone deserves a basic level of income, one that covers needs. And by needs, I mean food, clothing, shelter, transportation, health care and maybe a couple of bucks extra to take the kids for ice cream once in awhile.
When Republicans (they’re the only ones who’ve ever done this) aske me whether my late son was working when he got sick, that’s inappropriate and cruel. What you’re doing when you ask that is telling me my son probably didn’t deserve to live.
When you ask someone living in poverty why they don’t get a better job, that, too, is inappropriate and cruel. Do you think they hadn’t thought of that? Do you have any understanding of the barriers people living in poverty face? Most poor and low-wage people can’t afford a car, and most places have crappy public transportation (another policy failure). People in low-wage jobs usually have to have two or more jobs to hold body and soul together. That leaves little time for family, and no time for a proper job search or for training for a better job.
My gas pump attendant friend considers his job a desperate measure. Living on starvation wages leaves one in a desperate place, and if he were to lose that job, he likely would have to join the ranks of the homeless.
Before you condemn poor people, you might want to think about how your votes affect these lives. I mean, voting for people who will change these cruel policies is the very least you can do. Seriously, it is the very least you can do.
If you want to do more, you can join the ranks of people who are fighting against poverty, not the poor.
Fifteen years ago, in the final weeks of my son’s life, I was devastated that my son really would die because doctors in Savannah, Ga., refussed to treat him. Because the Emergency Room at Memorial Health in Savannah refused to treat him.
Most people don’t know that an ER can refuse to treat you, but the fact is, they only have to stabilize you. If you show up in pain, they can give you pain meds and release you. If you have an intestinal blockage, they can give you a laxative and release you. I know this because it’s what happened to my son as he desperately tried to seek care.
Lisa Edwards, 60, went to the ER at Fort Sanders Regional Medical Center in Knoxville, Tenn., on Feb. 5, saying her ankle was broken and she believed she was suffering a stroke. Doctors blew her off and told her to leave. When she begged them to listen to her, they called police.
Fifteen years and a few days ago, I had rushed to Raleigh after getting a call from my son that his cancer was back and there would be no cure. My husband and I checked into a motel near my son’s apartment and I got a call from one of my colleagues in the newsroom. A young homeless man had died after being turned out from the emergency room. Since I covered health care policy, my colleague needed some names and numbers of people to interview for a story about him.
Tommy McMahan had pneumonia and the doctors had given him antibiotics and discharged him. McMahan knew he was too sick to go back on the street, especially since the twmperature was well below freezing. But doctors refused to admit him.
Emergency Room personnel called the police, who arrested him. He died that night, alone in his cell.
Like my son, Edwards and McMahan weren’t wealthy and couldn’t pay for treatment. Like my son, the hospital disposed of them. Like my son, they died, The only difference is that my son suffered, in poverty, for three years because that’s how long it took to approve his disability. His first check came nine days after he died.
This is how we treat poor people in this country, and about 68,000 of them die each year from lack of access to care, according to a study before the pandemic hit in 2020. And it’s been estimated that up to a third of the more than one million covid deaths could have been prevented if people had sought care right away. But they didn’t because nearly half of Americans say they can’t afford a $400 suprrise bill without borrowing money.
What’s worse is that up to 14 million people could lose access to health care when the pandemic spending ends. Medicaid grew by nearly 20 million low-income people under the expanded access during the pandemic, which began in 2020. Once the spending dries up, some 14 million of them could be booted from the program as their eligibility disappears. Thousands will die from lack of access to care.
Before my son died, I promised to fight as long as I lived to get a system of universal health care in place. I thought the Affordable Care Act would do that, but I was mistaken. Big Insurance has preverted the law to benefit themselves, and we, again, lose.
The average deductible out-of-pocket costs for workers covered by an employer plan is over $6,000, according to the Kaiser Family Foundation, with workers at small companies paying up to $2,000 more.
That’s not affordable.
In addition, plans with lower deductible (and Medicare “Advantage” plans) have networks so narrow that you can go bankrupt if you get sick or injured while traveling.
In the end, that’s not affordable, either.
Fifteen years ago today, we were preparing to say goodbye to my son. I was making calls to set up interviews in the Raleigh area so I wouldn;t be charged with vacation time when I took him to see his doctor and to his forst chemo appointment. I could do nothing to save his life.
Fifteen years and people are still being refused care and dying as a result. We hear about them all the time, but we still refuse to vote for people who will give is the health care system we need.
If this isn’t state-sponsored murder, I don’t know what is.
On this day 15 years ago, we had less than five weeks left with my son.
Thirteen years ago today, less than two years after our broken helath care system killed my son, it very nearly killed my husband.
He had felt a heaviness in his chest for several days, and with his family history — the men tend to die of heart attacks in their 40s and 50s — he went to the doctor. She ordered an EKG, which was alarming, so she called his cardiologist. They informed him our insurance required preauthorization for cardiograms, even after an alarming EKG. It could take a couple days.
Fortunately, he survived the wait, and the cardiologist sent us straight to the hospital. Do not stop at home, do not collect your pajamas and toothbrush, get to the ER. He was rushed upstairs and diagnosed with a nearly complete blockage of the artery knows as the “widowmaker,” and taken into surgery within an hour. Still, just as they got him onto the table, his heart quit. His doctor told me if it had happened so much as a minute earlier, he would have died. As it was, he wouldn’t be out of the woods for about 48 hours after double bypass. The wait imposed by the insurance company, which went against medical advice, very nearly killed him.
I got a little revenge two years later, when North Carolina was considering building its own Marketplace for the Affordable Care Act. I was part of a panel of stakeholders brainstorming and advocating. The rep from my insurance company stated that they would like to be able to keep costs down by insisting on preauthorization for expensive tests.
I raised my hand.
“Would that mean pre-auth for shoulder MRIs or, say, cardiograms after a bad EKG?”
“Oh, we would never do that,” she said.
“You’re gonna have to walk that back,” I said. As she reacted with shock, I added, “I have the record of when you made my husband wait 48 hours for pre-auth after a truly alarming EKG.”
More “shock” from her. “That’s inexcusable! Who’s your carrier?”
Suddenly, everyone was scribbling on their notepads. The insurance company would not get permission to demand pre-auth in cases where people’s lives were at stake. Sure, demand pre-auth for non-vital tests, but not for tests that diagnose life-threatening conditions.
The insurance company that wouldn’t sell insurance to my son and that delayed my husband’s cardiogramdamn nearly long enough to kill him is still in business. They’re classified as a nonprofit, but they are powerful and they, together with others, are loaded with cash to bribe lawmakers to maintain their power over our lives.
Yes, the Affordable Care Act forced Big Insurance to sell insurance to everyone, but copays and deductibles average almost $4,000 per person, and some of the networks are so narrow that if you fall ill on vacation, it could bankrupt you. This is at the same time nearly half of Americans say they can’t pay an unplanned expense of $400 without borrowing money.
So-called “Christians” are happy to spent $14 million on commercials to tell people Jesus loved them, but to live what Jesus told them — to heal, feed, clothe and love the poor and marginalized — seems to be beyond their capabilities. Instead, they vote for lawmakers who will impoverish them and then vilify them for being poor.
These are the same people who ask whether my son was working when he gor sick, implying that he was somehow undeserving of care, even of life itself.
Fifteen years ago today, I was in Raleigh, contemplating life without my precious son. Two years later on this day, I would be cotemplating life without my husband, all because we can’t do what every other industrialized nation has done and move to a system that covers EVERYONE.
So, if you want to talk morality, explain to me the morality of allowing tens of thousands of people to die every year, of healing only the rich, of putting and keeping people in poverty. If this is your view, you are most definitely not morally superior to anyone.
I haven’t been writing much lately. I think it’s mostly because I’m frustrated that, 14 years after the death of my son from lack of access to health care, I still can’t make legislators care enough to fix this.
I have held rallies, I have spoken in public at every opportunity to explain how we can fix this. I have been arrrested six times trying to talk to legislators. I’ve never been violent, not have I ever condoned violence. Yet the violence of allowing people to suffer and die because of corporate greed not only continues, but is protected.
But I made a promise to my late son to work on this every day. I’ve been busy organizing, registering voters, speaking out … but it’s gotten really hard to just sit down and write, to tell other people’s stories, and then see the same bad actors getting elected again and again, to see things get worse instead of better.
I was naive enough to believe the Affordable Care Act would improve things but it turned out to be just another way to drive customers to Big Insurance, where customers are required to pay thoudsands of dollars before their insurance company has to shell out a dime.
I used to say the ACA would have saved my son’s life, but that’s no longer the case. An insurance policy no longer offers access to care. Deductoibles soar to $3,000 and above for an infdividual, which means if you don’t have $3,000, you don’t have access to care. This is at a time when nearly half of Americans say they would have to borrow money to pay an emergency expense of $400.
In other words, 14 1/2 years of activism has resulted in nothing but further degredation of the “system.” I know it’s hubris to hope one’s work will result in something positive, but to watch things get worse while tens of thousands die needlessly is downright depressing.
I’ve let it get to me, and it’s time to stop wallowing and start shouting again.
I’m busy registering people to vote right now because this is an election we can not lose. Period. Nothing good will happen on any front if we allow the corporate elite to hold power.
If you’re not registered to vote, do it NOW. And then be sure to vote. If we lose this one, we’re toast.
And if you think I’m too radical, ask yourself how the unnecessary death of your child might affect your outlook.
This day, 14 years ago, started out with my son looking up at me and saying, “I’m ready for this to be over.”
“Say the word, I said. “If you don’t want to do chemo anymore, just say the word.”
I was not ready for this to be over because I knew when this was over, he would be gone and I could never be ready for that. But we had been fighting for three years — actually for much longer than that because we couldn’t get anyone to care for him for years before that because no one would sell him insurance, so he had no access to the care he needed.
“No, I want to keep trying,” he said.
So, I got him in the car and we headed for Duke. As always, we headed east on I-40 and north on 146, and as we got to Durham, we passed the Mangum Street exit. He didn’t disappoint.
“Man gum,” he said. “I don’t know what that is and I don’t think I want to.”
Ask anyone who ever took him to a chemo appointment. He said it every time he passed that exit, and then laughed at his joke.
We thought he might have another few months. Chemo every two weeks might keep the cancer at bay for a short time. Every day — every moment — was precious.
But when we got to the clinic and he stepped on the scale, he had lost another two pounds. He was hovering around 102 pounds. The look on his face said it all. He really wasn’t ready to give up, but the chemo wasn’t helping and there were no more options. I would be bringing him home to die.
He thought maybe he could wait a few days, but the doctor told him it was time. He choked back tears as he said. “You don’t deserve this, Mike. You’re a good person and you don’t deserve this.”
On the way back to the car, Mike looked at me and said, “So, what do you think I have left, maybe two weeks?”
“I hope it’s more than that,” I said.
But it would not be.
His roommate and best friend, James, had cared for him, changing his dressings, making sure he was comfortable, trying to get food into him. But James feared coming home and finding he had died, and he didn’t think he could cope with that. We decided to bring Mike home and call hospice, and James would come to Asheville to be with us. Janet came too because even though they’d been forced to split so he could get Medicaid, they still loved each other.
We got him settled in and had a Hospice intake nurse scheduled for the next morning. James and Janet were just a couple hours behind us with the rest of Mike’s few belongings.
I remember every detail of this day in 2008 because I was very deliberate about remembering it. Time was so short and I wanted to savor every moment I had left with him.
On this day 14 years ago, we would have 14 days left with him. I couldn’t imagine life without him, and in some ways, I still can’t. Everything reminds me of him. I had hoped these anniversaries might get easier, but they haven’t. In fact, it gets harder every year as the echo of his laugh fades and his scent is erased from the leather jacket he wore everywhere.
And then I think about the million or so American families who have endured this same injustice from lack of access to health care and I’m furious that we won’t fix this. It’s not that we can’t, it’s that we won’t. It’s a choice to deny millions of people access to health care. It’s a policy choice to turn the other way and pretend we’re a decent, moral society. We are not.
On this day 14 years ago, I had to face the fact that my precious son was dying and there wasn’t a damn thing I could do to stop it, and now I have to live with the result of our backward, cruel and immoral policy decisions.
It’s so easy to get distracted. There’s just so much going on and it’s hard to keep track of it all.
What’s worse, the more we think about all that’s in the news, the more we want to shut it all out.
We’re in the middle of a deadly pandemic that millions of people refuse to take seriously, and the far-right has stacked the courts to make it “unconstitutional” to regulate lethal behaviors like not wearing a mask to slow the virus down.
We’re looking at a dictator in Russia who’s trying to expand his influence by conquering another sovereign country.
Our own federal government is dysfunctional, thanks to two Democrats who have been bought and paid for by Big Money — fossil fuel interests, banking interests, pharmaceutical and insurance interests — and the courts are not going to do a damn thing to stop them.
We’re a year into life after a violent attempted coup and not one of its leaders is in jail. Not one.
The leader of that coup, the former occupant of the White House, has been banned from social media, but he has yet to be arrested and he still has millions of followers who have been propagandized into believing he’s sent by Jesus.
Voting rights are being attacked in half the states, with gerrymandering and purging, reducing the number of voting machines available in heavily Democratic precincts, the former occupant of the White House is trying to install his own lackeys to count the votes, and we can’t seem to do a damn thing about it — like arresting the former guy for trying to rig the last election before he gets another chance.
We have a president who’s actually done a remarkable job at cleaning up the mess that was left to him. No, he hasn’t fixed everything, but he’s working on it. Is he doing enough? I don’t think so, but he’s doing something, at least. Still, the corporate-owned media is criticizing him as though he were as damaging as the former guy.
That leads us to another big issue that few people seem to be aware of: Big Money owns the media, and they’re not doing the job of an unregulated free press. Instead of being a government watchdog, they’ve become the lapdog of the most corrupting influences. They exist to distract people from the truth. That we even allow Fox to call itself a news company is disgusting, since they peddle an incredible amount of misinformation and outright lies.
Even the legitimate news sources are filled with the distractions of celebrity and lifestyle news and sports instead of focusing on what’s truly important.
So, what — other than posting our outrage on social media — can we do?
Well, we can vote. That’s just the most basic responsibility of a citizen in a Democracy. We all need to read up on the candidates in every election and vote for the person who lines up most closely with our views.
With our primary elections as they are set up, it’s highly unlikely we can get a true progressive into office, but we can vote for people who aren’t blatantly trying to overthrow the government.
The impotant thing to remember is that no matter how hard we work, this can’t be fixed overnight. The oligarchs spent 60 years getting to this point. Read the books, “One Nation Under God,” by Kevin M. Kruse, and “The Family,” by Jeff Sharlet. They chronicle the whole process by with the oligarchy harnessed the energy of Evangelical “Christianity” to capture election after election, starting with local school boards and town councils, and working their way up. Defeating them will take a Herculean effort and it will take time.
Meanwhile, we need to be loud — really loud — in our opposition. We need to collaborate with each other, form alliances and partnerships.
We can’t stop and we can’t be distracted.
The prize is a system that offers a better life for everyone — voting rights, living wages, access to health care, improved public infrastructure, a truly just justice system — instead of a handful of the most privileged and corrupt.
Let’s focus on that, one voter registration, one election, one public office, one court decision at a time, all while remembering our goal.
It’s been a year since the former president tried to stage a coup and he’s still tweeting and screeching from his lair in Florida. His cronies are still roaming free and our Democracy is still in serious danger.
Between the pandemic and the political uncertainty, all of which are made worse every day these people remain at large, anxiety levels are creeping higher every day — at least mine are.
Toss in a flood in my basement last August, the damage from which is still being fixed five months later because of “supply chain” issues (I suspect these are deliberate so prices can be raised), and all I want to do is knit and bake bread. It’s hard to concentrate long enough to read the news in the morning and I can’t watch it on TV.
Like others, I lay awake nights wondering whether humanity will even survive. God knows we don’t deserve to. We’re following “leaders” who beckon us down the path to destruction, burning the forests, over-fishing and polluting the oceans, resisting switching to renewable sources of energy and blithely unaware that the methane we’re allowing to escape into the atmosphere will keep increasing until we no longer can breathe. When I mentioned this to a friend a couple years ago, his response was, “Human are clever.” I had to remind him we’re not clever enough to be able to breathe methane.
We’re living in a failed state. Not failing, failed.
We can’t pass laws that will save the planet, let alone ease the suffering of the nearly half of Americans living in or very near poverty. We can’t raise wages, we can’t offer health care, we can’t even assure people their votes will be counted on Election Day. We can’t stop mass shootings. We can’t manage immigration. We can’t maintain our infrastructure well enough to prevent the shutdown of the busiest highway on the East Coast in a snowstorm, leaving thousands of people stranded in their cars for more than a day. We can’t even work together to stop a deadly pandemic.
All of this because we won’t tax the richest of the rich, but we still spend trillions on the war economy. We still force poor people to go to war in exchange for an education, and too many either don’t come home or come home so compromised that an education is difficult, at best, and we address the issue of veteran suicides with a “Thanks for your service.”
In addition to suicides, rates of addiction and overdose deaths have skyrocketed because people have no hope of their lives getting any better and the Sackler family took advantage of people’s pain so they could increase profits by fueling the addiction epidemic. They’re still free, too, by the way.
The stock market keeps rising, though, so we’re told the economy is blazing hot, and it is — for the privileged. Most people don’t have money to invest in the stock market, and that wealth isn’t trickling down. A decade after workers began asking for $15 an hour, some states and municipalities are offering it, but the minimum wage would be almost $24 an hour now if it had kept pace with inflation, and frankly, it takes that to live comfortable anywhere in the country.
Housing prices continue to surge, leaving nothing for the people who work for a living, especially those in the service jobs we claim are so essential. Homelessness is rising with the prices as investors and corporations buy up more and more of the housing stock. There are more than enough empty housing units to house every homeless person, but we make them sleep in the streets and then arrest them for vagrancy and demolish the small tent communities they build.
We place people in poverty with bad public policies and then vilify them for being poor.
Meanwhile, the leaders of the Jan. 6 insurrection still walk free a year after their coup attempt because we appear to not have a functioning justice system. We have a Supreme Court packed with right-wing idealogues to speed us along the path to totalitarianism. Already, women are losing control of our bodies and voting rights are being stripped away.
I have been quiet lately, as I try to process all of this. It’s time to start speaking up again.
We have arrived at the last minute. We are tettering on the edge of ecological and economic collapse unlike anything we’ve seen in human history. I’m thinking the end of the Bronze Age was just a practice run for what’s on the horizon already.
It’s time. If we don’t move now, it really will be too late.
On this day 13 years ago, the world lost a fabulous jackass, and I lost my precious son.
I’ve told this story every year, of how, when the hospice nurse arrived, we couldn’t rouse him, of how he finally woke up, of how the nurse kept saying he could still be with us for days, but I knew better.
I’ve told about how he tried to tell me he loved me with his last bit of strength, and of how he saw my sister, who had died a year and a half earlier.
I re-live it every year. I see him in the bed, I feel it in my gut, that desperate wish to keep him here with me, that secret, erroneous, knowledge that my heart would stop when his did.
I can hear my older son’s voice sobbing, “He’s dead? No, no. Oh, no!”
What I remember most is how pissed I was when he died and I didn’t. I sat there for a few seconds, waiting for my turn to go. Certainly God didn’t intend to leave me here.
But my heart kept beating, beating, beating …
I remember calling my colleague, John Boyle and asking him to tell everyone in the newsroom. John called back a few minutes later and apologized for being insensitive before asking whether I knew what day it was. Yeah, I said, I knew and I believe it was intentional.
I remember the woman from the funeral home demanding I had to come into the living room to sign some papers that were on a clipboard resting on my son’s corpse. I couldn’t bear to see that body bag. I couldn’t bear the thought of watching that body bag being taken out and loaded into an ambulance.
I asked her to come into the kitchen and she said it would be easier if I just went out there because she was in a hurry.
That’s when my pastor, Joe Hoffmann stepped in. He walked into the living room and calmly told her she needed to step into the kitchen now. I’m still grateful for that. It’s bad enough my son died from a broken health care system, I didn’t need the memory of him being taken out of my house in a body bag.
But I still had to get used to telling people he had died.
“How’s your boy?”
“Oh my God, I’m so sorry!”
I remember all the kindnesses — the hugs, the visits, the meals, even a very expensive bottle of single-malt Scotch. I remember the cards and letters, the kind gestures and the words of condolence. I would not have survived without all of the love from my friends.
I had to get used to telling his story over and over and over … hundreds of times in these last 13 years.
This morning I woke and grabbed the tangle of yarn we once called “boo bankie,” a blanket I crocheted for him when he was little. As it unraveled, he tied knots in it until it was a tangle little bigger than a football. He always had it with him — he couldn’t sleep without it. When I pulled it close to me this morning, I wanted to smell him on it, but the antidepressants I was on after he died robbed me of my sense of smell.
But as devastated as I still am, today is the day we celebrate the crazy, funny, tragic and far-too-short life of a proud jackass.
Today is the 13th annual Mike Day.
After Mike’s memorial service, several of his friends came up to me to announce that April 1 was no longer April Fool’s Day, it would be known henceforth as Mike Day, since he was the biggest fool they knew.
“We’ll wear plaid, eat Cadbury Creme Eggs and do silly things all day long,” one of them said. “All the other fools are just amateurs, anyway.”
So, every April Fool’s Day — excuse me, Mike Day — I take the day off. I have plaid sneakers, plaid socks, a plaid shirt and a plaid hat. If it was a little warmer today, I’d wear my plaid shorts.
Tomorrow I’ll get back to work because we still don’t have a president who will work for Medicare for all.
I’ll get back to work because even though 70 percent of Americans want Medicare for all, we still don’t have legislators and policy-makers who will get it through for us. And that’s because elections can be bought, paid for by the people who have more than they ever can spend, but who think people in need are just lazy.
I’ll get back to work because even before the pandemic began, an American was dying every eight minutes from lack of access to care.
I’ll get back to work because up to one-third of Americans who have died of COVID did so because they couldn’t get early care.
I’ll get back to work because more Americans lack access to care now than did when my son died, despite passage of the Affordable Care Act because Big Insurance has found ways other than pre-existing conditions to deny coverage (restrictive networks and astronomical deductibles keep millions of people from getting the care they need).
I’ll get back to work because I made a promise to keep working until we have universal access to care or until my heart finally stops.
Today was our last day with him.
I miss his laugh.
I miss his empathy.
I miss his wisdom.
I miss his twisted sense of humor.
Unless you have lost a child to injustice, you can’t understand. You have no earthly idea. I can only pray you never find out.
Thirteen years ago today, I was at my son’s apartment in Cary, getting ready to take him for chemo, when he looked up at me and said, “I’m ready for this to be over.”
He hated chemo, but he wanted to stay and see his nieces and nephew grow up.
He wanted to be around to crack inappropriate jokes, to eat my homemade bread, to go to the beach with his friends, to cook gourmet food, to enjoy late-night conversations with other night owls, to snuggle up to his cat, to help people get and stay sober, to build computers from spare parts.
We knew he had to have gained two pounds for there to be any hope the chemo was working. And we knew he had, at most, a year, because the doctors at Memorial Health System in Savannah had ignored his symptoms and refused to do a colonoscopy until he was vomiting fecal matter and weighed just 110 pounds (he was 6 feet tall).
I would never be ready for this to be over.
When we arrived at the clinic at Duke Medical Center, he stepped on the scale.
He had lost another pound.
The look on his face proved to me he wasn’t any more ready for this to be over than I was.
“I tried!” he said. “I really tried.”
That was it, then. There was nothing more we could do. His doctor, Herbert Hurwitz, sobbed as he told Mike, “You’re a good person, Mike. You don’t deserve this.”
It was so different from the doctor in Savannah, who had allowed my son to come perilously close to death before doing anything. And his dismissive attitude as he said, “We can do a little chemo, I guess, but you’ll have to get your affairs in order.”
That had been two years earlier, when he shrugged and gave up on Mike after allowing him to almost die three different times, first by not investigating what was wrong for months and months, the second time by not treating a stricture in Mike’s small intestine until he weighed just 104 pounds and then by not treating a life-threatening infection in his surgical incision. Had we not sought another opinion and paid for a consultation, he would have died in 2006. Dr. Hurwitz adopted Mike because he knew sending him back to Savannah was a death sentence. He fought for Mike’s life as hard as we did, and he gave us two more years with him.
But the damage had been done by that callous jerk in Savannah and his colleagues, who had written in my son’s medical record, “Patient needs a colonoscopy but can’t afford it.”
On this day, we learned my son’s life was to be measured in days or, if we were lucky, weeks.
My son would die because we as a society only value the lives of people who can pay.
He would die because insurance companies were too greedy to sell him a policy.
He would die because doctors were allowed to let him suffer.
He would die because we live in an anti-life culture populated by people who pretend to be “pro-life,” and “Christian,” but who have no idea of the meaning of either of those terms.
As we were leaving the clinic, he looked at me and said, “How much time do you think I have? Two weeks?”
“God, I hope it’s more than that,” I said.
It would not be. He would die two weeks later, with me by his side, holding his hand and telling him how proud I was that I got to be his mom.
I brought him home with me that day and called Hospice, grateful that I didn’t have to do this alone.
His best friend, James, and his now-ex-wife, Janet (he had to leave to get Medicaid), would come the next day and spend the next two weeks helping to care for him. We had a team of people who adored him ready to dedicate the coming days to making him comfortable and listening to his bad jokes and his deeply wise reflections on life and death.
Thirteen years ago today, I brought my son home to die from medical neglect and societal greed.
Since then, more than a half million Americans died from the same thing before this pandemic even started, and now, up to one-third of the deaths from COVID-19 are being attributed to people not being able to get care early on in the course of the disease.
I worked for the passage of the Affordable Care Act, only to watch it being perverted by insurance companies to their own benefit. While 45 million were uninsured when the ACA passed, we have at least that many now, and another 40 million or more who can’t afford to use their health insurance because of deductibles of thousands of dollars — the average is over $3,000 now. Tell the 141 million Americans who live in or near poverty they can just use their insurance when they can’t even pay a $400 surprise bill without borrowing money.
In other words, all the work I’ve done, alongside other advocates, for the last 13 years has done not one bit of good. While the estimate 13 years ago was that 45,000 people were dying from lack of access to care in this country, the estimate a year ago — before the pandemic began — was 68,000.
I am exhausted. I feel defeated. As my son said 13 years ago today, I am ready for this to end.
On this day 13 years ago, I brought my precious son home to die. We would have just two weeks left with him.