Still waiting for health care

My late son, Michael, with his niece, Meghan.

Today marks 13 years since my son called me to say he was feeling better because the doctor found and drained a couple quarts of fluid from his abdomen.

We didn’t know why the fluid was there, but in the back of my head was the fact that fluid like that is a symptom of end-stage cancer.

A week later, we found out that was the cause, that the cancer was back and nothing could be done to cure it. He had, at most, a year to live. He would die just six weeks after getting the news.

This year is the 13th time I have relived this seven weeks, and I still have to lament that we are no better off than we were in 2008, when I promised my son I would work for access to health care for every human being.

In fact, things have gotten even worse. Where some 45,000 people were dying every year from lack of access to care in 2008, that number has been revised upward to 68,000 now — and that estimate is from before the pandemic began.

We had 35 million people with no insurance. We still have that many, plus another 45 million or more who can’t gain access to care because of sky-high deductibles. In a time when nearly half of Americans say they can’t pay a $400 surprise bill without borrowing money, 70 percent of employer-sponsored policies have deductibles over $1,500, and the average deductible on a health insurance policy is over $3,000.

That is not access to care.

Today, I live in one of 12 states that have so far refused to expand Medicaid to cover everyone living in poverty. I have tried calling, writing, visiting and pleading with the Republicans in charge to accept the billions of dollars in federal money to cover people whose incomes can’t cover insurance. These are people making minimum wage. Many of them already have chronic conditions that they can’t manage without care, and that will kill them prematurely.

In North Carolina, three of them will die today.

Three more will die tomorrow, and the next day, and the next, just the way my precious son did 13 years ago on April 1.

I have been arrested three times in Raleigh, trying to talk to legislative leaders about access to health care. I was not violent or even threatening. I asked to speak to leaders and was told they weren’t there, even while I could see them sitting there. I offered to wait because what I had to say was so urgent. Instead, I was arrested and hauled off in zip-tie cuffs.

I am forced to relive these last days of his life year after year after year with no end in sight to the carnage caused by our broken system.

I had hoped to see some improvement by now, but the Affordable Care Act has been so sabotaged by insurance companies and other monied interests that we’re actually seeing more people die from lack of access to care than we did 13 years ago, and we have more people who don’t have access to care.

I promised my son I would work for access to care for everyone as long as I have breath in my body. I have kept my promise. But I really hoped we’d have seen some progress by now. Instead, we’ve been skipping happily backwards, giving insurance companies, Big Pharma and the rest of the crooks everything they want, while keeping us fooled that we’re doing better because pre-existing conditions have to be covered and young people can stay on their parents’ plans — as long as their parents can afford to have insurance plans.

I’m exhausted. I’m stressed. I’m grieving. I’m frustrated. I have all but lost hope that we can get anything done.

But I will not stop.

Everyone deserves care.

You can help in this fight. Every one of you can call legislators at the state and national level and let them know you need to see improvements if they want to keep their jobs. Demand that every candidate tell you how they plan to improve health care access.

Then, you need to vote as though health care matters to you, because health care needs to matter to you.

You need to care that people are dying every day from curable and/or preventable causes.

My son would be a lawyer now if he had survived our broken system. He would also be a proud jackass, a master of inappropriate humor and practical jokes, a dedicated volunteer helping people get and stay sober, a man with a brilliant mind and a kind heart.

Those of us who loved him still grieve every day over this hole in our hearts that won’t ever heal.

This has to stop. We have to demand better, and we need to demand it now.

They’re not done trying to steal our health care

Do you really think this man and his partners in crime are going to give up and stop trying to take away our access to health care?

 

Everyone seems in a celebratory mood this morning.

Stop it.

Stop it now.

Mitch McConnell announced the latest version of Trumpcare is dead, and that saves Medicaid — for now.

But he also announced he will try a “clean repeal,” meaning the ACA would go away in two years. It would leave up to 33 million people without insurance. Thirty-three million. That’s how many people have gained insurance under the Affordable Care Act.

When my son died on April 1, 2008, I started fighting for reform. In 2009, I left my job as a newspaper reporter — I volunteered to be laid off — so I could devote all my time to the effort.

I wasn’t thrilled with the Affordable Care Act, but it was a step in the right direction. It would have forced insurance companies to cover my son and he likely would still be alive — that is, if it had passed in 2005 instead of 2010.

As it is, my friend, Kelly, who worked with me in the fight to pass the ACA, will die if this is repealed. Kelly has lived with cancer for years, and if the ACA goes away, she will lose her insurance and her access to the care she needs. She will die.

Middle-aged people with diabetes, asthma, high blood pressure, high cholesterol, depression and any number of other illnesses, will be left to die. Cancers that are treatable when diagnosed early will be diagnosed too late to save people’s lives — exactly what happened to my son.

Think about it: if you make $35,000 a year and you have a policy with a $10,000 deductible and high co-pays, you won’t be able to afford care unless you sell your house — if you own a house and can sell it in time to save your life. That’s what the Senate version of “replace” had in it, a two-tiered insurance system that would give people with a lot of money good insurance while the rest of us would be able to get only junk plans.

Before the ACA, some 45,000 Americans died every year from lack of access to care. That’s one every 12 minutes.

Under the ACA, an estimated 33 million more Americans are covered than were before. Most of the 12 to 15 million without coverage now are low-income people in states that have so far refused to expand Medicaid. That’s also where most of the approximately 20,000 who die every year from lack of coverage live.

So, we’re saving 25,000 lives every year with the ACA, but the powers in Washington want it repealed because — well, why?

The ACA is not failing. Insurance companies are not going broke. In fact, a federal court has found that United Health Care was not losing the money it claimed it was losing when it pulled out of the ACA marketplaces.

What’s happening is that a group of ultra-wealthy, ultra-conservative thugs want more money. They want more tax breaks for the rich. They want less regulation. And they don’t give a damn about you and me. They don’t care about the opioid addiction epidemic — in fact, they deliberately caused it to make money.

If you don’t remember, Purdue Pharmaceuticals began marketing synthetic opiates in about 1996. They told doctors and others that this new synthetic wasn’t addictive, although they knew damn well it is. Before long, doctors were prescribing it for things as simple as a tooth extraction — things where an over-the-counter painkiller would do.

They now ship enough painkillers into West Virginia alone to kill everyone in the state.

And you think these murderers are going to give up now because they can’t get a “replacement” through for the ACA?

Think again.

Their disdain for us runs so deep that they won’t give up. Tax cuts are far more important to them than our lives. They want that money.

They’re talking about passing a repeal that would take effect in two years — after the next election so we we can be distracted easily, since we’ll still have our insurance at election time. They can keep promising a replacement that they have no intention of passing.

Please remember that they’ve had seven years to come up with a replacement and they showed us already that they have nothing.

If they genuinely cared a whit for us, they would have had some idea how to do this. But the ACA was a conservative idea, generated by a conservative think tank (The Heritage Foundation) and implemented by a conservative governor (Mitt Romney) in a single state. The Democrats pushed it because they thought conservatives might be willing to go with their own idea.

They weren’t.

Obama offered a huge olive branch with the ACA, and he put icing on the cake by taking single-payer off the table at the outset. Had we started discussions there, we might have been able to get a public option and give insurance companies some competition.

But we started negotiations in the center and landed right of center, and they still want to get rid of it.

That alone should tell you that they will stop at nothing to take away our health care. If it is at all possible, they will do it. And they won’t stop trying.

Don’t let up now. Don’t stop calling, writing, e-mailing, faxing … Our lives depend on it.

 

 

 

The modern scourge on our communities

Last week I wrote about the flooding of our communities with opiates, and later that day, I learned a friend had just lost her 25-year-old grandson the epidemic.

Yesterday, another friend almost lost her 30-year-old son to it.

That makes three people I know dead in the last year and countless others struggling to stay alive in spite of it.

And today, the person in the White House announced he would cave in to pressure from the drug companies and decline to regulate or even negotiate with the drug companies.

Let me tell you a little about what kind of pain that decision will cause.

Yesterday, I had lunch with my friend, who brought along the program for her grandson’s funeral service. Just seeing his photo made me cry as I thought about the lost potential. We talked about him, and about his father, who also is battling this same addiction.

This death has planted the seeds of radicalism in my 74-year-old friend, just as my son’s death did to me.

“You’ve been here,” she said. “Where do I start?”

I told her to learn everything she can about opiate addiction and its history. I told her how the British flooded China with opium in the 19th Century and that she should look at the parallels with the modern opiate epidemic here.

Big Pharma can claim innocence, but its executives have to know how many pills are out there, and that they’re not all being consumed legitimately. Of course we can’t prove it — these people have really effective ways of covering their tracks. They’re not leaving any smoking guns for us to find.

But they put immense pressure on legislators and others to turn a blind eye to their abuses and to blame the victims.

They knew when they were promoting these pills in the 1990s just how addictive they are, but they convinced us people don’t become addicted if they just take the pills for pain.

Turns out that’s not true. I had a friend who got addicted while taking them for severe back pain. He stopped after he had surgery, but he had to go through withdrawal, and it was miserable, and he felt their pull on him for the rest of his life.

My son continued to take them after severe burns over 40 percent of his body. He did need them for the pain, but after the pain was gone, the pleasure the pills offered was too strong a pull for him and he abused the pills for years before he was able to get off. I still won’t say it’s for good because addiction is a chronic and progressive illness; it has a way of pulling its victims back in.

We as a society are very good at blaming victims for their circumstances. Yes, my son continued to use the pills. But his insurance company paid for the prescriptions for a long time. Then they tried to worm out of paying for in-patient rehab for him.

I’m certain his case is not unique.

Addiction is an illness that causes you to lie to yourself, as well as to others. You tell yourself that you are in control. See, you’re just taking six pills a day. But then you’re taking eight and you tell yourself that’s OK because you’re still going to work and functioning. In fact, you’re functioning better than ever, thank you.

When my son’s doctor refused to prescribe any more pills, he went to a pain clinic an hour from home, across the Florida state line, and a “doctor” there gave him what he wanted.

The son of my sister’s friend turned to heroin, which is cheaper. That’s what my friend’s grandson did, too. Now they’re both dead.

These lives don’t matter to Big Pharma, because like the tobacco companies, they’ll just recruit more addicts as their victims die or go into recovery.

Policy makers obviously don’t care about the lives lost because they’re not moving to make any changes based on the deaths.

Here are a few facts from the American Society of Addiction Medicine:

  • Drug overdose is the leading cause of accidental death in the US, with 52,404 lethal drug overdoses in 2015. Opioid addiction is driving this epidemic, with 20,101 overdose deaths related to prescription pain relievers, and 12,990 overdose deaths related to heroin in 2015.
  • From 1999 to 2008, overdose death rates, sales and substance use disorder treatment admissions related to prescription pain relievers increased in parallel. The overdose death rate in 2008 was nearly four times the 1999 rate; sales of prescription pain relievers in 2010 were four times those in 1999; and the substance use disorder treatment admission rate in 2009 was six times the 1999 rate.
  • In 2012, 259 million prescriptions were written for opioids, which is more than enough to give every American adult their own bottle of pills.
  • Four in five new heroin users started out misusing prescription painkillers.
  •  94% of respondents in a 2014 survey of people in treatment for opioid addiction said they chose to use heroin because prescription opioids were far more expensive and harder to obtain.

If that doesn’t convince you there’s a problem, and that it is not the fault of the people who fall prey to Big Pharma, I don’t suppose anything will.

 

 

Old habits die hard

blmsmall

When my son died seven years ago from lack of access to health care, I set about telling people that his life mattered. It mattered to me and to my family. It mattered to his friends and to the people whose lives he saved through his work in addiction recovery.

His life mattered. I used that phrase a lot when I spoke in public about his life and death, and I couldn’t think of a phrase that said it better or more succinctly.

So, a couple years ago, when the phrase “Black lives matter,” began popping up, I really, really understood the meaning.

But as much as I got it, I began to realize I would have to give up that phrasing when it came to my son and others who die from lack of care. Yes, their lives matter, and it wasn’t without a tinge of resentment that I realized the phrase now belongs to a civil rights movement that doesn’t necessarily include my son.

Breaking the habit of using it in reference to health care is a hard thing to do. That’s because my son’s life did matter; I just have to find another way to say that because I have great respect for the Black Lives Matter movement, and I fully understand the need to specify that black lives matter.

My son died from lack of access to health care. That happens to people in poverty, and more people of color are trapped in poverty than are white people. More people of color are denied care. More people of color die, and each of those lives matters to me.

What’s worse is that more black people die at the hands of law enforcement; more unarmed black people, in fact. It happens far more often that a person who might have committed a minor offense if slain by police if that person is black.

I understand this. I have internalized this. I have sat at a table with three African-American women and learned that all of them have lost sons to gunfire. I, on the other hand, got to say goodbye to my son. At least I have that.

So, I know I shouldn’t use the “… lives matter” phrasing, but the habit creeps in and it’s done before I realize I have done it.

Recently I used it on a Facebook event page and faced a shitstorm of criticism. I was on the road, traveling to my stepbrother’s funeral and didn’t have a chance to change it immediately, which only made people angrier.

I apologize. Really. I will try not to use that phrasing again. But if I do, please do as one of my friends did and private message me gently. I’m trying to break the habit. It can be difficult for me to remember that I need to find another way to phrase what my son;s life meat, but I am willing to do that.

I know all lives matter, but we must specify until people really understand that black lives matter every bit as much as mine or my son’s.

I understand. I get it. I will break the habit. Just, please, don’t call me names — especially racist.

Living in a police state

ferguson

Looking at the photos and footage of Ferguson, MO., reminds me of a war zone — almost any war zone. Tanks, tear gas, smoke bombs …

I remember the uprising in Hungary of 1956. I was 4, but I remember the tanks rolling down the streets toward unarmed civilians. I remember my mother crying because the US wouldn’t intervene. It is one of my earliest memories.

In Ferguson, it started with the murder of an unarmed 18-year-old. Would he have been slain if he was white? I doubt it.

Police say he went for the officer and tried to take his gun; a witness said his hands were in the air when he was shot.

Michael Brown was two days away from starting college. He was not a thug.

When people came out to protest, they were met with police in riot gear, police who assumed they would be violent, and when people became combative, they were met with military force.

The mayor has refused to identify the police officer who shot Michael Brown, fearing for the officer’s safety. Well, what about the safety of our teenagers?

Oh well, it was a mistake. Why is everyone so upset?

It upsets me because of the frequency with which black men are shot, choked and beaten by white police officers.

It upsets me because the media always look for the least flattering photo of the person who was killed.

Oh look. He’s wearing a hoodie. Guilty!

It upsets me when people who knew and loved him become outraged and demonstrate against the police tactics and they are met with a full-on war machine.

This isn’t the billy clubs of the 1968 Democratic Convention; these are tactics used in combat.

The county’s police chief trained in anti-terrorist tactics in Israel in 2009. What he learned and what his happening is war waged against citizens.

According to reports, police fired tear gas and rubber bullets near a crew from the TV network Al Jazeera America. In a statement, the network said that “Al Jazeera is stunned by this egregious assault on freedom of the press that was clearly intended to have a chilling effect on our ability to cover this important story.”

Two reporters were arrested while they were in a McDonald’s. They later were released without charges being filed, but the police got what they wanted out of it: fewer reporters on the scene to witness and tell the world what’s happening.

I had the privilege to hear the Rev. Dr. James Cone speak a few weeks ago. Cone is the “father of Black Theology,” and he was speaking about his latest book, “The Cross and the Lynching Tree.” 

As I listened to Cone and as I read his words, I come to understand that lynchings are still going on in this country, and I have begun to call the deaths of unarmed black men just that.

As I participate in Moral Mondays and develop close friendships with people of color, I become more aware of racism in our society. I see how my friends are treated. I hear what people say.

I realize I have been insulated, even though I thought I was aware of the racism around me before this last year. I saw the institutional racism and the injustices in our “justice” system. But I know now it goes deeper than I ever imagined.

Old friends tell me I am being radical, but I disagree. Black men are shot, strangled and beaten by police at an astronomically higher rate than whites. A few months ago in Durham, NC, police claimed that a young black man who had been searched and was handcuffed in the back of a police car, had shot himself in the head. When people turned out to protest, they were met with police in militarized riot gear.

Last week, a middle-aged African-American man with asthma was choked to death when he tried to stop police from beating another man. I saw that one because somebody videoed it.

I saw video of police beating two men on private property because they were videoing the officers with their cell phones.

The police are supposed to be there to protect us, but now they are working to silence us and to hide their own actions.

I understand that police have to prevent violence from spreading, but maybe they could prevent it by not killing innocent black men and boys.

Maybe if police told the truth from the outset. “Yes, it appears an innocent person was shot and killed. The officer is under arrest.”

Would people be as quick to riot then?

Yesterday on Facebook, a white man commented on a thread that black people should understand that justice will prevail.

It’s nice to be white and believe that, but if you’re not white and/or wealthy, there is little justice for you. And if you protest, you will be met by military force.