They’re still killing us.

Lisa Edwards, 60, died of a stroke in police custody after being refused treatment at a hospital in Knoxville, Tenn. /Photo: Knoxville News Sentinal

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.

The video (https://www.knoxnews.com/story/news/local/2023/02/23/knoxville-police-investigate-officers-after-woman-collapses-in-custody/69937224007/) shows Edwards pleading with police to listen to her, while they insist she has to leave, and finally arrest her. She collapsed in the back of the police vehicle and died a short time later.

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.

The immorality of our health care system remains

My late son, Mike, with my husband on a hike in Maine in 1998.

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?”

“You are.”

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.

14 years and it’s still no better

My Mike, clowning around on Jekyll Island. The gorilla is still there, and I have photos of other family members with it.

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.

Mike Day, for the 13th time

This image, taken seven months before he died, is probably my favorite. He was so handsome and his eyes were so mischievous. Also, he wasn’t making a goofy face.

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 …

Damn!

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?”

“He died.”

“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.

Bringing my son home to die

This image, taken seven months before he died, is probably my favorite. He was so handsome and his eyes were so mischievous. Also, he wasn’t making a goofy face.

It was 13 years ago today.

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.

A note to the president

President Joe Biden and Dr. Jill Biden observe a moment of silence to commemorate the half million Americans lost to COVID-19

Dear President Biden:

You spoke my heart last night as you honored the half million souls lost to COVID-19 in the last year in this country.

It’s hard to wrap my heart around the grief that runs through this nation right now. But you need to know this grief that surrounds unnecessary death is far older than the pandemic, and it needs to be addressed.

You, having suffered so much loss, are perhaps the most empathetic man ever to set foot in the White House, and you are the polar opposite of the previous occupant in that respect (and in many others).

But you need to know this grief surrounding unnecessary death has been with us for decades, as people who have no access to health care are tossed aside like so much garbage.

When you spoke of opening the closet and not just seeing, but detecting the scent of your loved one on the clothing hanging there, I thought of the leather jacket my late son wore, its scent now dissipated after 13 years.

When you spoke of watching your son’s life fade from his eyes, I remembered sitting by my own’s son’s side as he breathed his last, I remembered being so angry that my heart didn’t stop, too.

Those final six weeks of his life are etched deeply in my very being, and I re-live them every year — now for the 13th time, as my heart keeps on beating.

I remember the sound of his voice as he asked what I was going to do with the “Dead Kid Card.” He had this twisted sense of humor, you see, and he played the “Cancer Card” the whole time he was sick. As he lay dying, he mentioned that I would have the “Dead Kid Card,” and he wanted to know how I would play it.

“I don’t want it,” I said.

“Doesn’t matter what you want,” he said. “It’s being dealt. What are you going to do with it?”

He paused as I sat, staring.

“What are you going to do?”

I promised him I would fight for health care for everyone every day, in every way I could imagine, as long as I had breath in my body.

Mike was born with a rare birth defect and it left him very vulnerable to a particularly nasty form of colon cancer.

That birth defect was deemed by insurance companies to be a pre-existing condition, so he couldn’t buy insurance. Without insurance, he had to pay for the colonoscopies he needed every year out-of-pocket. He’d already had pre-cancerous polyps removed before he was 25.

Mike decided to go back to college when he was 28, and since he was working part-time while he went to school, employer-based insurance was denied to him. He couldn’t find a doctor who would let him pay for a colonoscopy in installments, so he went without. It was a risk he had to take because there were no other options for him.

He got sick in the beginning of his junior year. Abdominal pain, vomiting, constipation … His doctor demanded $2,300 cash up front, so Mike still couldn’t get the test he needed so badly. His doctor wrote in his record, “Patient needs a colonoscopy but can’t afford it.” Can you imagine seeing that in your child’s medical record?

He went to the emergency room, but as you know, they only have to stabilize you there, not find the root cause of your problem. So, he was sent home with pain pills and a laxative — and a bill for several thousand dollars — when his real problem was a malignant tumor. No one helped until it was too late so save his life.

Even after he got sick, he was denied Medicaid until he left his wife.

He applied for disability and was denied. Approval ultimately took 37 months and his first check came nine days after he died.

Mike died at 3:50 p.m. on April 1, 2008, just a few months before you would become vice president. At that time, it’s estimated an American died once every 12 minutes — 45,000 a year — from lack of access to health care. By early 2020, before the pandemic, that number had risen to 68,000 a year, or one every eight minutes.

You know the grief of losing someone whose life you held more dear than your own. Imagine it had happened because of systemic medical neglect, and that neglect was not only tolerated, it was protected.

As long as private insurance companies are in control, they will dictate who gets care and who does not. They found a way around the Affordable Care Act. They simply jacked up deductibles until most people couldn’t afford to use their policies. The average deductible — or, as I like to call it, ransom — is more than $3,000 at a time when 140 million Americans live in or near poverty. They can’t pay, so they don’t get care.

Many of these half million COVID deaths could have been prevented of people had been able to seek help earlier in the course of their illness.

Mike was born on my birthday, so I mark the passing each year as another year without his sense of humor. I miss that most of all.

I miss the sound of his tone-deaf voice as we sang “Happy birthday to ME!” at the top of our lungs every year.

I miss the late night phone calls where we would talk about everything from Phil Collins to philosophy.

I miss cooking with him. I miss making up new recipes.

I miss the way he slathered butter on my homemade bread while proclaiming, “The only thing wrong with this bread is that it’s not at my house!”

I miss his utter impatience with bad drivers, actually hollering out the car window, “Hey! It’s the long, thin pedal on the right. You press it down with your foot!”

I miss how he loved animals and talked to them as if they could understand him, and how often it seemed as though they did.

And my grief is multiplied by a half million deaths from the same cause since he died. I live in a state where lawmakers steadfastly refuse to expand Medicaid. Three people die here every day from systemic neglect, just the way my son did, and these lives are no less precious than his or mine, or yours.

I know you to be a man of deep, deep empathy, so I can’t understand why you wouldn’t be pushing Medicare for all. That alone is the reason I didn’t support you in the primary election, and why I was so angry when you became the nominee.

All this empathy needs to be focused on preventing the depth of grief you and I live with every day. You understand it, and you can do something to lessen it.

When President Obama signed the Affordable Care Act, a hot mic caught you calling that step forward “a big f***ing deal,” and I loved that.

But that big deal has been derailed by Big Insurance, and we won’t be able to find a fix without getting them out. It’s time for Medicare for all.

You have more power to fix this than anyone else. You need to step up and do the decent thing.

Everyone deserves care. Everyone.

Sincerely,
Leslie Boyd

A dozen years and still no health care for all

Mike with his niece, Meghan, in 2000. His brother’s children adored Uncle Mike because he was so funny and kind.

Twelve years ago today, as I was driving into work, I got the phone call that would change my life.

I can still hear his voice. “Mom, the cancer’s back. There’s no cure. The most I can hope for is a year.”

There wouldn’t be a year. In fact, six weeks later, to the day, he would breathe his last.

I can’t describe my feelings that morning — the same feeling I have today as I re-live the trauma of learning there would be no hope for my son to realize his dream of going to law school to become a legal aid attorney because “poor people deserve a good lawyer, and I plan to be the best.”

I couldn’t cry because I had to get into work, and I knew once I started allowing myself to feel what was happening, I would lose control. My husband would be in the office a half hour after I got there, so I would say nothing to anyone until I could talk to him. If I spoke to anyone about it, I knew I would fall apart.

I sat down at my desk and shuffled papers, looked at my schedule, checked my phone for messages, checked my e-mail. None of it registered; I had to just go through the motions until my husband got there.

But when he did, and I walked over to his desk to tell him, I fell apart. It was all I could do to stay on my feet. I couldn’t breathe except to take in air with each wracking sob.

I don’t remember much about the next few minutes except that my colleagues stepped in to hold me up while my husband went to tell the managing editor that we were leaving to go to Cary and be with Mike. The editor never came out of his office to speak to me.

This day begins the most terrible six weeks of my life, re-lived now for the 12th time. Each year, the pain of losing him comes back, as fresh and new as it was 12 years ago.

The most painful part of it all is that it never should have happened. If he’d had access to an annual colonoscopy, he would still be here, probably a legal aid attorney working with people in Durham. I imagine him in the fight to end cash bail, working to get people who are awaiting trial released from jail so they wouldn’t lost their jobs, housing or children.

If we had a health care system like those in the rest of the industrialized world, he would still be here, still be a jackass who loved nothing better than a good practical joke, still cooking gourmet dinners for all of us, still complaining about bad drivers and traffic jams … still Mike.

But we have the most backward system anywhere in the so-called developed world, a system that killed 45,000 or more Americans each year in 2008 — a half million since it robbed me of my son.

The Affordable Care Act stemmed the tide a little for a few years, but we made the mistake of leaving insurance companies in charge, and they have perverted the system to their advantage with $6,000 deductibles. According to ehealthinsurance.com, in 2018, the average deductible was $4,328 for an individual and $8,352 for families.

Nearly three-quarters of employer-sponsored plans have deductibles of $1,500 or more, and the average family spends about $20,000 per year on health care costs. With more than 40 percent of Americans saying they can’t pay a $400 surprise bill without borrowing money, it’s hard to imagine how any but the wealthiest Americans can say they love their insurance plan.

That’s the “progress” we’ve made toward a more just and equitable health care system in the 12 years since I promised my son I would fight for access to health care for every human being. In fact, a new study from Yale University places the annual death toll at 65,000-plus, which means an American dies once every eight minutes.

I remember pieces of that day so clearly. I remember the shock of seeing how much weight he had lost in the few weeks since I had seen him last. I had trouble catching my breath.

I remember my daughter-in-law coming over to Mike’s place (they had been forced to split so he could get Medicaid here in North Carolina) and I remember his best friend and roommate, James, telling me of his fear of coming home from work and finding Mike dead.

After we had spent a couple hours with Mike, we checked into our hotel. My husband took a nap, and unable to even think about sleeping, I walked over to the electronics store across the street from the hotel. I was looking at photo printers, wondering how to connect them to my computer. As always, I thought Mike would be able to answer any questions I had about it, and then I realized he would be gone soon, and I almost fell to the floor. I don’t remember the walk back to the room, although I do remember how cold it was, and that I didn’t have a warm jacket with me.

I went to Target to get an inexpensive jacket — a red Converse zip-front hoodie — and I saw an exasperated mother with a fussy toddler. I wanted to stop and tell her how precious that child was, even though he didn’t seem so at the moment. I wanted to tell her to hold him close and love him because he could be taken from her by a system that preys on people rather than cures them.

I kept walking instead because I didn’t want to look like a crazy woman.

I’ve been working on this a dozen years and we are no closer to health care justice than we were when my son’s heart stopped.

I am the family member of just one of more than a half million corpses from this carnage, and every one of us has to live with this indescribable pain. I wouldn’t wish it on anyone — not even on the policymakers who allow it to continue, unabated, or to the corrupt insurance company executives who bribe policymakers to leave them in charge of such an immoral system.

I want desperately to see change. I want to see an end to these unnecessary deaths that rip families apart day after day after day — one every eight minutes.

So, stop telling me we need to get there gradually — it’s been too gradual already, and for every eight minutes we delay, another body is added to the count.

You want to call yourself “pro-life” or even moral? Stop supporting politicians who say we can’t afford to care for everybody. We can afford it, and we must.

It is 12 years past time for my precious son, and my pain is as terrible today as it was on this day 12 years ago.

I will never get over it.

I will never move on, not until every human being has full access to quality care.

It’s my vote, not yours

We can’t afford to do this anymore. It’s time for Medicare for all.

I’ve taken a lot of criticism lately for saying I won’t vote for anyone who doesn’t support a single-payer health care system.

Here’s the thing: You don’t get to decide who gets my vote, not in the primary and not in the general election.

I have good reason for my position. I call it the Dead Kid Card (only because that’s what my son called it before he died from lack of access to health care). I suffered a loss most parents only have nightmares about. I sat beside my precious child as he breathed his last, and his cause of death was neglect for profit.

My son should not have died, nor should any of the half million people who have been murdered by our profit-driven “system” since his heart stopped beating.

Universal access to care was proposed by Theodore Roosevelt more than a century ago, and we’re still waiting. The rest of the world has found ways to do it, but we still prostrate ourselves before the altar of profit. We spend twice as much per person as any other system in any advanced nation, and our outcomes are always the worst among the industrialized nations. Hell, Cuba has better outcomes than we do, and that’s because everyone has access to the care they need.

I’m not willing to wait any longer. I believe enough people have died, and it’s time to stop the unnecessary deaths so some insurance executive can take home another few million dollars and stash it in an overseas tax-sheltered account.

Health insurance companies are parasites. They add nothing of value to our system, but they suck billions of dollars out of our economy, and they deny lifesaving care that causes the deaths of tens of thousands of people every year.

OK, so now you’ll argue that some people love their plans. Well, I have a couple of problems with that. First of all, Medicare for all will get care to everyone, not just the few well-to-do people who have their access to care but don’t even think about people who have little or no access. That’s called selfishness, or greed. Remember, Jesus never said, “I got mine, get your own.”

Secondly, we know that 70 percent of employer-sponsored plans are high-deductible — meaning you have to spend $1,000 or more before you see a penny in coverage — The average deductible is $3,000. This is in a society where nearly half of the people say they can’t pay a surprise bill of $400 without borrowing money.

No one can make me believe that most Americans love their health insurance in light of those statistics.

And it’s getting worse.

According to a study by The Commonwealth Fund, (https://www.commonwealthfund.org/ ), median household income in the United States between 2008 and 2018 grew 1.9% per year on average, rising from $53,000 to $64,202. But health care costs rose 6 percent per year in the same time, and the Affordable Care Act has been in effect for about half of that time.

“The most cost-burdened families live in southern states,” said Sara Collins, lead author of the report and vice president for health care coverage, access and tracking at The Commonwealth Fund.

In general, those states tend to have lower median incomes, so even if the sticker price for premiums and deductibles is lower than in higher-income regions, health insurance costs take up a greater share of Southerners’ income.

The next argument I get is that people who work for insurance companies need their jobs. Well, jobs administering Medicare will be plentiful. Even managers will be needed, although the CEOs who have been skimming billions in our national treasure can go and live on their blood money because they won’t be stealing any more from us.

The longer we wait to do this, the worse things are getting, as for-profit companies take over health care systems, especially in rural areas.

Rural hospitals are cutting services or closing altogether, especially in states that refuse to take the federal Medicaid expansion money that their citizens are already paying for. Here in Western North Carolina, women in labor have to travel up to two hours to get to a labor and delivery facility. Ambulance rides can cost up to a whopping $40,000. People are dying because they have to call an Uber because they can’t pay for an ambulance.

Under the current administration, the Affordable Care Act’s protections have been weakened. Premiums and deductibles have skyrocketed. Since the mandate that everyone buy insurance has been lifted, people of moderate means have dropped their coverage so they can afford to pay for food and shelter.

Meanwhile, plans have become more and more restrictive, putting drugs and care on tiers so that if a doctor comes to see you while you’re in the hospital and they are not on Tier 1 in your plan, you could be faced with thousands of dollars in uncovered care. That lifesaving antibiotic could wind up costing you $300 per pill.

So, when I hear a candidate say we can wait for Medicare for all, my response is, “Nope.”

Our corporate overlords may not care if you die from lack of access to care, but I do.

I will not vote for someone who thinks people can wait for health care, and you have no right to tell me I have to. People are dying NOW, and we have to fix this NOW. I really don’t care if the rich don’t like it. They’re not the ones I’m worried about.

My vote will ONLY go to someone who’s ready to fix this.

Stop denying your privilege. It’s truly offensive.

Last night, somebody shocked me by telling me I was talking “nonsense” when I insisted out current health care “system” is broken, and that we have to move to single-payer.

“We need to preserve our system,” she said, and proceeded to try and shame me into supporting Joe Biden or another “moderate” who’s beholden to the profit-mongers currently in charge.

I was appalled that anyone knowing how I lost my son to this mess would say that to me.

I told her she was talking privilege.

She has the privilege of being covered by an insurance plan she can afford, co-pays, deductibles and all.

She has the privilege of not needing immediate help that’s just unavailable because she can’t afford it.

She has the privilege of not having watched someone she loves more than life itself draw his last breath because nobody would help him.

She has the privilege of being able to wait for politicians get off their asses and do something about the 35 million Americans who have no insurance, and the millions more who have insurance with a deductible so high they can’t afford to use it.

She claimed she has no such thing as privilege, that she just wants people to be able to get health care.

But she can’t see that tens of millions of Americans are going without while she calls me stupid for wanting them to get immediate access.

She probably thinks we can wait a few years for the minimum wage to hit $15, too. But if you’re making $7.25 an hour, you can’t wait for that raise. You need that money now. If you think otherwise, your privilege is showing.

If you hold the people at our borders in contempt because they walked a thousand miles with their children to escape drug gangs — gangs that are the direct result of US drug policy — your privilege is showing.

If you think our policy of incarcerating people — non-citizens or citizens — in private, for-profit prisons, not feeding them enough (I know about conditions in private prisons because my brother is in one) and then “contracting” their labor out to the highest bidder, your privilege is showing.

If you think the people in Flint and other cities with lethal contaminants in their water can wait for it to be fixed, your privilege is showing.

If you think it’s OK to keep somebody in jail for months as they await trial for a nonviolent misdemeanor like falling asleep on a park bench, causing them to lose their jobs, housing and even their kids, just because they can’t come up with $250 cash bond, your privilege is showing.

If these things and other atrocities perpetrated by the fascists in Washington are OK, it’s because you have a warm bed, clean water, access to health care, reliable transportation, enough food — in other words, privilege.

If you think poor people are just lazy and only want a handout, your privilege is showing big time.

And if you’re white and male and you don’t see any problem with the way things are, you’re particularly privileged.

When you have such privilege and you deny it, I find that deeply offensive. When you call me stupid because you can’t see your privilege — even when it’s pointed out to you, you are even more despicable to me.

When you have such great privilege and you deny it, you are willfully ignorant, and there are few greater sins in my book.

I know it’s hard to recognize our own privilege, but we must if we are to move toward a just society for everyone, not just for you.

No more gradualism, no more excuses

New York Times photo

A “friend” came onto my Facebook page yesterday to explain to me why we need to fix health care gradually.

The first thing I did was ask whether she thinks a century is gradual enough, since it was Theodore Roosevelt who first proposed a single-payer health care system more than 100 years ago.

But then I thought about it and removed the post — and the friend.

This is a person who knows I lost my son to this broken system. Her post was immensely disrespectful, and before I removed the post, I asked whether it would take the death of a child of hers to make her understand how misguided her post on my timeline was.

And in the 11 1/2 years since my son died, another half million Americans have died the same way. That’s right, 500,000 — 45,000 a year, year in and year out. The Affordable Care Act helped for awhile, but now 70 percent of employer-sponsored plans have a deductible of $1,000 or more — some as high as $6,000 — not to mention co-pays and out-of-network charges. Even plans on the exchange are pricey unless you have a large subsidy. The year before I went on Medicare, my premiums were $1,300 for just me and the deductible was $3,000. My co-pay to see my regular doctor was $40, and a visit to a specialist was $75. When I needed outpatient surgery for a kidney stone, I was responsible for more than $6,000 of the $13,000 bill. And this was before our local hospital was sold to a for-profit corporation.

No one has studied how many insured Americans die because they can’t afford that kind of money. Remember that a recent survey showed the majority of Americans can’t afford an unexpected $800 expense. Since most deductibles now are more than $1,000, where does that put the average family?

I’ll tell you one thing, it puts them in a place where they can’t afford health care. Sure, they’re able to get the colonoscopy or the mammogram, but if it shows any irregularity, now what? Can you afford the tests? How about the treatment?

Nearly half of cancer patients have to wipe out their entire life savings for treatment — and that’s with insurance. One in three will go bankrupt.

Once every 12 minutes another American dies from lack of access to health care. I’m betting their families would rather not have waited for reform.

If you think you need to tell me why we should wait to fix health care, do me a favor and restrain yourself. I’ve heard all your arguments and I don’t need to hear them again. It only re-opens the wound of my son’s unnecessary death again and again and again.

I understand that you don’t know what it’s like to watch your child breathe his last, and I hope you never do. But you need to understand that hearing you say we can wait for health care means you don’t give a damn about any of these deaths, even though you say “I’m sorry for your loss.”

If you come onto my timeline to tell me why we can wait, you are most assuredly not sorry for my loss, or for anyone else’s.

I think enough people have died, and you’ll never convince me it’s OK to let more people die.

I think your excuses are lame, and a lot of them are lies designed to keep the oligarchs in charge of our health care.

I think you’ve probably not lost a child to this mess, and I sincerely hope you never do.

And I still think we need to fix this now. There are no more excuses.