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.

Ten years later, we’re still not getting health care to people in need

Ten years ago today I brought my son home to die.

It seems like so much longer than that since I’ve heard is crazy laugh or heard him cuss.

It seems like yesterday when I realize that the pain is still as fresh as ever.

His doctor had told him two weeks earlier that if he didn’t start putting weight on, it would be clear that the chemo wasn’t working. They wanted to see him gain 2 pounds. That’s all, just 2 pounds.

I had gone to Duke Chapel to pray for those 2 pounds, telling God in the middle of this opulent place that 2 pounds wasn’t too much to ask, was it?

I also knew it might not happen. I knew my son’s days were limited, but I wanted as many days as I could have. As I sat in that beautiful place, I began to think about what would be after he was gone, what I would do in the midst of unimaginable grief. It was there that I began to think about how I might work toward a public policy that meant other mothers wouldn’t have to endure the pain I was facing. I feel as though my mission began in that sacred space.

If my son had gotten the care he needed, he wouldn’t have developed cancer. If we had lived in any other developed nation in the world, my son’s medical needs would have been met. This needed — still needs — to happen here.

As we sat in his living room before going to the chemo appointment, he looked at me and said, “I’m ready for this to be over.”

I was not.

But when we got to the clinic and he stepped on the scale, he had lost another pound.

“I tried,” he said, fighting back tears. “I really tried.”

We had fought this cancer for three years. The hospital in Savannah, Memorial Health System, had nearly killed him three times in the first year, and Dr. Herbert Hurwitz had taken him on at Duke University Medical Center and worked as hard as we did to try to save his life.

He was (and still is) accused by some of being lazy and wanting a handout because he didn’t have health insurance and couldn’t afford to pay tens of thousands of dollars for his care.

He was treated in Savannah as someone who didn’t deserve care. It felt as though his very humanity was being denied. His surgeon was so obvious about his lack of concern and caring that I was tempted to slap him, and I am committed to nonviolence. I did drop the F-bomb when the doctor said they wouldn’t do any more to save him except “maybe a little chemo.”

He had been forced to leave his wife and depend on others to pay his bills as he waited 37 months for the disability he deserved. He was dead nine days before the first check came.

But until this day, we’d held out hope that we might be able to save his life. Even if he was to work to pay off his medical bills into his 80s, we hoped we could keep him with us.

Today, a Tuesday in 2008, was the day we learned there was no more hope. My son was facing death and I was facing life without him.

As we left the clinic, I was pushing Mike in a wheelchair because he was too weak to walk to the parking garage. He turned to me as we entered the parking garage.

“How much time do you think I have?” he asked. “Two weeks?”

“Oh, God, I hope it’s more than that,” I said. I was talking to God as much as I was answering my son’s question.

I called his dad to tell him the news and he began sobbing.

“There has to be something we can do,” he said. “I survived colon cancer, I thought he would, too.”

“You had the best care money could buy,” I said. “You got to go to the Mayo Clinic; Mike was relegated to a backwater health clinic with people who held him in utter disdain because he couldn’t pay. Your lawyer got you disability in three weeks; Mike’s still waiting after three years. What the fuck made you think everything would be OK? His experience was the exact opposite of yours and you were never even aware enough to see that through your privilege. I’m sorry, but I don’t want to hear this from you.”

We stopped at his apartment, where his roommate, James, and my daughter-in-law were already waiting. They helped me load his few belongings into my car and promised to follow us within a few hours. Mike took an extra dose of pain pills because the four-hour ride would be extremely painful otherwise. He had resisted using pain meds, but his medical team had finally convinced him he deserved to have relief from the constant pain.

We had to stop halfway home to get a memory foam pillow because he had no fat left on his backside and he was uncomfortable. We bought a walkie-talkie so he could call us whenever he needed anything, and we took turns with it so someone would always be on Mike duty.

We didn’t know how much more time we would have with him on this day 10 years ago, but we were determined to soak up every moment we had left to us.

Ten years ago today, I brought my precious son home to die. We would have just 14 more days.

It seems like forever. It seems like yesterday. I still miss him to the very depths of my soul.

No one should have to die the way he did. No mother should have to watch a child die the way he did.

Ten years into this grief, I rededicate myself to the mission. I will fight for universal access to quality health care. I will fight until we achieve health care justice or I will die trying.

I will not stop. I will not shut up. I will not go away.



Think of this as a public service announcement: Check your skin

If you had serious sunburns as a child, pay attention to your skin because melanoma is deadly if it’s not caught early.

I’ve been away for a bit, dealing with my son’s death anniversary — it’s 10 years as of April 1, and I relive these final six weeks every year, day by day.

Ten years ago today, I was praying my son could gain two pounds in the next two weeks. If he couldn’t, it would mean the chemo was ineffective and he would die in a matter of days or weeks, starved by a cancer that could have been prevented had he been able to get the care he needed.

I had sat in the chapel at Duke the day before and prayed for those two pounds. That’s all I was hoping for because a cure was out of the question.

I had six weeks to prepare for the loss of my child, and I was two weeks into that. I wanted that whole year the doctor said we might have, but only if chemo worked.

I find it hard to motivate myself to get much done during these six weeks, but this year, I had another reason to be preoccupied: I was diagnosed with melanoma, which is one of the most curable cancers when diagnosed early — and one of the least curable once it has spread.

Mine was diagnosed early. I was told it was stage 2, which is still contained, and has a 10-year survival rate of about 60 percent. When you consider my age, I think that’s about my chances of survival for another 10 years anyway.

But my thoughts were about seeing my son again more than much else. Yeah, I wanted to survive this, but I wasn’t in a panic that I might not. I thought about chemo and about how much I would be willing to endure for a longer life. I watched my son and my sister endure chemo and its side effects of deep bone pain, nausea, hair loss, extreme fatigue and more. I didn’t know how much I was willing to suffer for a few more weeks or months on this earth.

I had a constant low-level anxiety, but I was upbeat. I convinced my son not to panic because his wife had a melanoma removed 15 years ago and she’s fine.

I worried about the stage 2 diagnosis, though.

As a reporter covering health issues, I wrote about the importance of sunscreen every year for more than 20 years. I’ve seen photos of early melanomas, so I knew the one on my leg was something to keep an eye on and I made the appointment as soon as I saw a change in it.

The thing is, even if you’ve just had one severe sunburn, you can develop melanoma. Nobody should plan to be outdoors for any length of time without sunscreen, especially people with fair skin like mine. Growing up in the 1950s and 1960s, when people didn’t use sunscreen, I had some nasty burns. I guess I’m fortunate that I wasn’t one of those girls who sunbathed — I found it boring to just stretch out on a towel in the sun.

As it turns out, my cancer was stage 1. Staging can be tricky, but it was about one-third of a centimeter thick and less than the circumference of a dime, and the surgeon said the survival rate at this stage is nearly 100 percent.

Considering the amount of tissue they scoop out after diagnosis, I believe they got it all.

But I will go in for screenings every three months for the next year, and then annually.

This is something everyone who has access to care should do, especially if you’re fair-skinned and have had one or more serious sunburns. By that I mean, if you blistered and peeled, you need to keep any eye on any moles or “age spots.” A friend was just diagnosed with early-stage melanoma after her doctor told her the spot on her face was probably an age spot, but went ahead and referred her to a dermatologist anyway.

Here’s what to look for in a mole that you suspect might become cancerous:

  • The color changes.
  • The mole gets unevenly smaller or bigger (unlike normal moles in children, which get evenly bigger)
  • The mole changes in shape, texture, or height.
  • The skin on the surface becomes dry or scaly.
  • The mole becomes hard or feels lumpy.
  • It starts to itch.
  • It bleeds or oozes.

If you don’t have access to health care, examine your skin monthly and ask someone to check your back and the backs of your thighs for moles. If you see one changing, get to a clinic and have it looked at. Getting it taken care of at stage 1 or 2 means a few hundred dollars; waiting means your life.



Why is this still happening?

Before mountaintop coal removal and after.

Back in the 1960s, coal companies discovered they could get at coal seams more cheaply by blasting off the tops of mountains. This removes the land, or “over-burden” in coal company jargon.

It also removes all the trees and wildlife, pollutes the air and valleys and leaves toxins in its wake.

As the price of oil rose, more mountaintops were removed, sending a toxic sludge sliding down into the valleys to cl0g streams and kill wildlife.

People in the valleys began to see more birth defects among their children. In fact, a 2011 study showed that  babies born to mothers who live in areas with mountain top removal mining have a 26 percent higher rate of birth defects than the national average. The study also found the risk is 42 percent higher over the course of the study from 1000 to 2003, and 181 percent higher during more recent years, specifically for a heart or lung defect, which suggests that the effects of living near mountaintop removal sites may be cumulative.

Another 2011 study found the odds for reporting cancer were twice as high in the mountaintop mining environment as in non-mining areas in ways not explained by age, sex, smoking, occupational exposure, or family cancer history.

People have complained, people have sued, people have taken it to Congress, but nothing has changed. Big coal is allowed to devastate the Appalachian Mountains because it has the money to buy Congress and regulatory agencies. No matter what the residents of eastern Kentucky, Virginia and West Virginia do, the mountains keep being blown up by coal companies.

Residents’ homes are shaken and weakened, valleys flood and dust fills the air, and the coal companies keep blasting.

Meanwhile, coal companies say they can “reclaim” the land. In fact, the law requires they do so. Perhaps they can bring in topsoil and replant trees, but the trees don’t grow well in the reclaimed soil, so non-native plants are sown to hold the soil in place and the original bio-system is gone forever. The streams are gone, animals have disappeared and people are sick and dying.

Coal companies also talk about “clean coal.” There is no such thing. It is dirty. It is messy. It pollutes.

But coal companies and oil companies can’t own the sun or the wind, so the politicians they do own refuse to invest in clean energy. Instead, they’re allowed to destroy the planet, mountaintop by mountaintop, waterway by waterway.

An entire mountain culture is being destroyed by the rape of the mountains for cheap energy, and no one seems to be able to stop it, although people are still trying.

This weekend, a group of West Virginia women will go to the state capitol in Charleston to protest the practice of mountaintop removal.

Army veteran and registered nurse Marilyn Mullens is leading the march. She and a group of coalfield mothers, daughters and activists will shave their heads to “call out the bald face complicity of Big Coal-bankrolled state politicians and the denial of the devastating health and human rights violations in coal mining communities,” AlterNet’s Jeff Biggers reports.

Like Big Oil, the arrogance of the coal companies and the politicians and regulators they have bought is hard to stomach. Their short-sighted pursuit of profits is destroying ecosystems that can’t be replaced or recreated. It won’t stop unless we the people take back our government from corporate control.




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