A victory for the people

Now that I’ve had a little time to breathe, let me say, “Whew!”

I was surprised to see the Affordable Care Act left intact and shocked to learn Chief Justice John Roberts was the swing vote.

I had agreed to participate in a press conference in Charlotte with Health Care for America Now and Action NC, so I was getting ready to leave the house when news of the decision came down.

I didn’t know whether to jump up and down hollering, “We won! We won! We won!” or cry, so I did a bit of both.

At the press conference, I told Mike’s story and I talked about how much I miss him. But I am overjoyed that other mothers won’t face the deaths of their children the way I did. I’m grateful that fewer people will suffer and die because they can’t get access to care.

When Dr. Herbert Hurwitz at Duke University Medical Center adopted Mike and gave us two more years with him, he asked that we write to our legislators and ask them to support access to quality health care for all Americans. I had already done that, but I wrote again. And I wrote some more. Then I did it again.

I felt Mike’s spirit with me when I heard the news. I felt like he was dancing around the family room with me. I was thrilled that 30 million more people will have access to health care thanks to this law, but at the same time, I wish I could have shared the moment with my son.

My son’s illness, his lack of ability to get insurance, or care when he got sick, and ultimately his death set me on a path of lifelong health care advocacy. Too many people say I’m being political about it, but this shouldn’t be political. This is about saving lives — some 45,000 or more of them each year. This is a moral issue because it is about saving human lives. How can anyone claim to be pro-life and be against providing health care to everyone?

How can you say you believe life is precious so you’re against abortion and then turn around and say my son didn’t deserve help?

How can you vilify the poor by calling them lazy bums when you’ve never sat down with them and heard their stories? Is it because opponents of health care reform are so afraid they might be caught between the cracks one day that they have to blame the victims to feel more secure in their own safety?

Mike’s story makes a lot of Tea Party people furious because he wasn’t a lazy bum (nor are most of the other people who are being denied care). I’ve been called a lot of nasty names — and so has Mike — by people who don’t want to admit that it could happen to anyone, including them. They don’t want the stories out there because the stories don’t go with their narrative and they don’t want to change their narrative. That would require disagreeing with what Fox News tells them to believe.

The only reason health care became so political is that big business has co-opted the political process.

People don’t seem to understand that their health care policy premiums have helped pay for this corruption of our system and that the new law will put a cap on the insurance industry’s ability to do that. They must spend 80 percent of the money we pay them on direct care now.

This law is a good start on the road to access to care for everyone, just as Medicare was supposed to be in 1965. The plan was that Medicare would slowly expand downward in age until everyone was covered. Since that never happened, this new path became necessary. It’s a bit of a round-about way to achieve the goal, but OK, I’ll work with it.

Today begins the work toward getting the other 21 million access to care. Let’s start by letting people buy into Medicare if they want.

 

Waiting and hoping for a miracle

Kelly and me in the Green Room of the Ed Shultz Show on MSNBC.

I have hoped for miracles before. Sometimes I’ve been disappointed, like when I could do nothing for my son as I watched him get sicker and sicker.

Then there’s my friend, Kelly Cuvar, who has had a rare form of cancer for 13 years. Pretty much everything about her is a miracle. Knowing her has made me believe miracles are possible.

Kelly has never been in remission. She is from Ohio (from John Boehner’s district, of all places), but she lives in New York, where she is able to get care for her disease.

But, she says, worrying about health care has caused her more angst than her cancer. What if she loses Medicaid? What if she had to find care on her own for some reason? What if the Supreme Court overturns the Affordable Care Act and Paul Ryan gets his way on Medicaid and Medicare?

Kelly and I don’t talk as often as I would like — we tend to keep up on Facebook and via e-mails these days. She’s pretty upbeat most days. Often, she’s downright irreverent. She has a right to be.

Kelly has said time and again that dealing with our broken health care system is more difficult than dealing with cancer. In most other countries, she wouldn’t have to worry about whether she would be thrown to the curb. In most other countries, she would get care. Period, end of discussion.

In the US, however, she never knows whether the doctor she’s seeing will stop accepting Medicaid, forcing her to find another doctor who will. Her well-being depends on which way the political, and lately, judicial, winds will blow.

Every decision she makes about her life revolves around her health care. It determines whether she’ll marry (she can’t now), where she’ll live, whether she can work (she can’t) … Just about every decision most of us make without thinking, Kelly has to make with an eye to whether it will affect her health care. Worrying about her care causes her more distress than her illness, Kelly says.

Kelly and I were fellow travelers along the road to getting the Affordable Care Act passed. We met in Washington, DC, when we both went there for rallies and lobbying. I carried my picture of Mike; Kelly carried her cane. We realized very quickly that we share a similar twisted sense of humor and the guts to speak truth to power.

When the ACA passed, Kelly and I were on the phone to each other, laughing and crying.

Sure, the law didn’t give us everything we wanted, but it was a start and we vowed to continue working to improve the system. We had won a battle, but there would be more and we knew it then. We would work for a public option, for the ability to buy into Medicare. Someday, insurance companies will have competition and people will be able to gain access to the care they need.

We didn’t believe we might have to start from scratch, though, and if the Supreme Court overturns the law, we’re back to Square One.

Kelly has cancer and I’ll turn 60 later this year. Neither of us has unlimited time. But neither of us is willing to give up, either.

No matter what the Supreme Court decides, Kelly and I will keep advocating for access to quality care for all Americans. Getting sick shouldn’t mean having to choose between bankruptcy and death.

If the ACA is upheld, Kelly will be able to buy insurance in 2014, as will others who have had cancer, diabetes, high blood pressure, depression, acne … all the things the free market has used to deny insurance coverage to people. We will be able to go to the doctor with the assurance that our needs will be met.

Some 20 million people will remain uninsured, however, and Kelly and I will continue to fight for improvements to the system. We may get tired because she’s sick and I’m old, but we won’t quit. I assure you, we’re in this for the whole race.

It may take a miracle, but Kelly and I have seen miracles; we believe in them.

 

 

The myth of government dysfunction

By my friend and former colleague Matt Davies.

As a Supreme Court announcement on the Affordable Care Act nears, the volume on the rhetoric is rising almost to the pitch it was before President Obama signed the bill into law. House Speaker John Boehner is promising to eviscerate the law if it is upheld so that President Obama won’t be able to boast about success during the coming election season. GOP nominee Mitt Romney is denying he had anything to do with the Massachusetts plan on which the federal law is based. He now says he would work to repeal the ACA.

So, what about the good of the American people? Is our current “system” really worth defending? Are we really OK with more than 45,000 unnecessary deaths a year and hundreds of thousands of bankruptcies because of massive medical bills?

Big Insurance is fighting anything that will pinch its profits, and the GOP spin machine is talking about how the ACA will remove all control of their health care from people, and how the system will drown in an avalanche of paperwork.

But over here on the left with the ghost of Ted Kennedy, we’re talking about how to expand coverage, possibly to single-payer.

Here’s a little truth for you: Medicare spends 97 percent of its funds on direct services; health insurance companies are whining about having to spend 80 percent of the money they take in from customers on care. Why? Because of executive pay and bonuses, lobbying, advertising, marketing.

Here’s another uncomfortable fact for the right: Since 1970, the number of physicians has less than doubled, while administrators’ jobs have grown by about 3,200 percent, according to figures from the U.S. Bureau of Labor statistics. Those administrators work for insurance companies and for doctors’ offices, mainly because doctors need so much help coping with the different forms, codes and requirements of each insurance company. In the US, we spend more than $700 per person on health care administration than they do in Canada, which has a national system.

About 31 percent of everything we spend on health care goes to this administrative mess, and the worst of it comes from the private sector. Under an improved Medicaid-for-all system, bills would go to one place; forms and codes would be universal instead of having a different set for each of dozens of companies.

If everyone has the same coverage, there will be no tricks to deny people coverage, such as denying a claim for a colonoscopy because it was done in a doctor’s office instead of a free-standing clinic.

Doctors and patients can make decisions based on the needs of the patient, not on what the insurance company will or will not pay for. The bureaucrats who interfere with doctor-patient decisions work for the insurance companies, not the people.

A nurse complained to me a couple years ago that she was on the telephone with a Medicare representative for almost two hours as they tried to come up with a code that would pay for what the patient needed.

I told her a private insurance company would have denied the care and hung up, and she agreed that likely would have been the case. The bureaucrats in the government might be somewhat burned out, but they aren’t eligible for a bonus just for denying you care.

We could save somewhere between 45,000 and 101,000 lives every year because we all would have access to appropriate health care, not to mention the money saved by managing chronic illnesses so they don’t become crisis care.

Insurance companies are spending billions to avoid letting everyone have access to care because there’s no money in it for them.

We are the only one of the so-called wealthy nations that does not see health care as a basic human right.

No matter what the Supreme Court decides in June, we all need to demand a better solution — one that puts people before corporate profits.

 

You bet I’m angry

By my friend, Pulitzer Prize-winning cartoonist Matt Davies

I had a pretty lengthy rant going on Local Edge Radio the other day. I started with the arrogance and mean-spiritedness of Justice Antonin Scalia, making light of the Affordable Care Act, complaining it was too long to read and saying it was OK to let people die.

It was NOT OK to let my son die, or any other American whose life could be saved by appropriate medical treatment. A study released this week placed the United States 19th out of 19 industrialized nations in health care outcomes. Dead last (pun intended). It also estimated 101,000 Americans die each year because they lack access to appropriate treatment.

Someone commented to me that we can’t afford to treat everyone — just look at all the problems the Euro-nations are having.

Well, first of all, the economic mess comes from the power of Wall Street and the big banks to do whatever they please, rob the economy blind, take us to the brink of world economic disaster and suffer no punishment for it. Secondly, every one of those countries pays far, far less than we do for health care because it costs far, far less to care for people before they become critically ill. It costs far, far less to treat mental illnesses in a clinic than it does in a jail, which is where some 60 percent of people with chronic and persistent mental illnesses get treatment nowadays.

And we’re just talking about the financial cost, not the human cost of allowing people to suffer needlessly.

Regulation is important, not just for health insurance companies, but for banks, Wall Street, utilities — every industry. Without it, you get economic meltdown as the 1 percent steals ever more from the working class.

Without regulation, there is less safety in the workplace — the reason my son has had third-degree burns three times where he works.

The Right would have us believe government can do nothing right. They point to schools, which have been defunded at historic rates.  When schools were funded, American children had the best education system in the world. That hasn’t been true since the 1980s. In fact, we have been slipping badly.

Now they’re defunding highways and transportation, claiming that the market will build and maintain roads where they’re needed. Yes I have heard that claim many times; I’m not making it up.

But you still can turn on your tap and get water. You still have libraries and police and fire departments you can call when you need them — at least until the Right privatizes them or eliminates them entirely by defunding them. Already, we’re seeing concerted efforts to reduce their power to negotiate and reduce their salaries and benefits.

Workers’ salaries aren’t keeping pace with inflation. In every city in the country, it takes more than twice the minimum wage to pay for even the most basic needs (housing, groceries, utilities, transportation, child care). Those basic needs do not include cable TV, any meals out, including McDonald’s, or Internet service.

Why do you suppose that’s true? Well, we’ve villified the American worker and killed the unions.

This sustained attack on working Americans has reduced our salaries and increased our debt — it hearkens back to the Guilded Age when factories put people up in company-owned housing and paid them in company scrip which could only be spent at the company store. Prices at the store were high enough to keep workers in debt so they couldn’t leave.

If you think that’s not where we’re headed, think again.

And now they attack women, forcing us to have transvaginal sonograms — against our and our doctors’ wills — before we can have a perfectly legal surgical procedure. They call us whores because we want to be the ones to decide when and if we will bear children, as though we can’t be trusted to control our own bodies.

I lived through the changing of those laws. I thought we had changed attitudes too, but apparently, we weren’t as successful as we thought.

We are engaged in endless wars, killing and maiming our soldiers while asking nothing of any of the rest of us. The military-industrial complex is making billions off of these wars while soldiers and their families suffer with not enough pay and not enough care, not to mention the misery we inflict on the populations of people we attack. But if we demand an end to war, we’re told we’re not supporting the troops. That’s bullshit, pure and simple.

I’m tired of the attacks on the American people and I’m furious about the lies they perpetrate on us.

The Affordable Care Act will not result in rationed care; that’s being done already by Big Insurance. It will not mean people over 75 will be refused treatment for cancer, not like my 30-year-old son was refused care because he didn’t have insurance. These things are deliberate lies.

You bet I’m angry.

 

Is it too hard for you, Justice Scalia?

Justice Antonin Scalia jokingly asks whether he's expected to read the entire Affordable Care Act.

Yesterday was the fourth anniversary of my son’s death, and the week leading up to it is difficult under any circumstance. But this year it was especially hard.

I paid close attention to the Supreme Court arguments in the case of the Affordable Care Act and watched with great dismay as they became as political as I had anticipated.

Now, the Supreme Court isn’t supposed to be a political body, but this court is unabashedly so. It has been stacked with ideologues on the right, and there is no reason among those justices. Just look at all the decisions they have made along ideological lines, including the disastrous Citizens United decision that has allowed unlimited corporate money into our election process.

In recent years, Justice Kennedy is the only one to whom anyone needs to pitch an argument, since he is the only one who matters anymore.

I was truly appalled at Justice Scalia, as he joked about the individual mandate leading down the slippery slope to a mandate that we all have to buy broccoli. That’s clever and witty if you have guaranteed medical care for the rest of your life. Oh, and by the way, we taxpayers pay for his government-funded health care. Now, there’s a joke for you, albeit a particularly cruel one for those of us who have watched loved ones die slow and painful deaths because they couldn’t get care.

And when he jokingly asked whether he should have to read the entire law, my head almost exploded. Here’s what I have to say to him:

You’d better read the whole damn thing, Justice Scalia; it’s your job to read and understand the law. Or are you above such menial chores now? I’ve read it. In fact, I keep a copy on my desktop. I see it as my best hope of getting care to more Americans, even as you joke about their pain and suffering.

The death toll stands at 45,000 a year, Justice Scalia. Four years ago, one of them was my child and I will never get over that. I was genuinely insulted by your behavior as you made light of my son and the hundreds of thousands like him when you said we could just let people continue to die. Yuk, yuk.

What’s really baffling to me is that you call yourself a Christian. I can’t stand in judgment of your actions, but someday, someone will. I only hope I get to witness it.

Political pundits are saying now that President Obama should run on the failures of the Supreme Court. I think that’s a great idea; right now it’s the only governmental body less popular with the American people than Congress.

And maybe if the president wins a second term we can get a couple more justices who will judge each case on its merits, not on the ideals of the Koch Brothers.

 

Happy “Obamacare” birthday

Carolyn Comeau with her husband, Craig and their children, Louise and Colin.

As we celebrate the second anniversary of the Affordable Care Act, we can’t become complacent. Its opponents, funded by the massive Health Industrial Complex, are stepping up their attacks and lies.

Just the other day I saw the tired old “death panels” online again, and the lie that anyone older than 75 won’t get treatment if they get cancer. I answered with a paragraph from the law that forbids age discrimination.

So, what’s the truth? Well, my friend Carolyn Comeau can tell you that she doesn’t have to worry about her family going bankrupt if her breast cancer should come back. She was diagnosed five years ago with breast cancer. Soon afterward, her husband, Craig, lost his job, but they were able to maintain coverage through COBRA. It nearly broke the bank to pay the premiums, but they got her through treatment.

Just as COBRA was ending and they discovered that Carolyn was uninsurable, the state’s high-risk pool came online, thanks to the Affordable Care Act. The coverage isn’t cheap, but it’s not unaffordable for the family, either.

Older Americans are getting more help paying for their prescriptions; 2.5 million young adults are able to stay on their parents’ policies until they reach age 25. People who have insurance no longer have to pay anything out-of-pocket for screening tests like colonoscopies and mammography. Insurance companies can’t dump you if you get sick, and a birth defect is no longer grounds for an insurance company to refuse coverage to a child. That last one alone might have saved my son.

For all the bad press the Affordable Care Act is getting, for all the deliberate lies about what’s in the law, it still has the approval of about half of Americans, and many who don’t approve say it’s because the law doesn’t go far enough.

I’d still like to see a public option. Give me the opportunity to buy into Medicare so I don’t have to send money to insurance companies that spend billions on lobbyists and mega-bonuses for their executives.

For all its flaws — the biggest of which is that more than 20 million Americans will remain uninsured — the Affordable Care Act has improved our health care system and is poised to do a lot more.

So, I’m celebrating today that we finally got that first step to a better system for all Americans.

 

We made a difference

Health care advocates from across North Carolina filled the gallery this morning when the NC House Health and Human Services Committee met to consider House Bill 115, a bill that would hand over the control of the state’s health insurance exchange to the insurance companies and their allies.

They had a bit of the deer-in-the-headlights look as they saw the gallery filled to overflowing. There wasn’t even any standing room.

As of late last week, the plan was to push H115 through to the House Insurance Committee, which is chaired by Rep. Jerry Dockham, the insurance broker who introduced it.

But we advocates got the word out about the bill, despite the reluctance of most of the state’s media to pay any attention to it, and filled the gallery. Without saying a word, we let them know the word is out and we will fight them on this.

The bill that was supposed to create the health exchange was being drafted by a diverse panel of experts including health care providers, advocates, consumers, physicans and more. The group was put together by the NC Institute of Medicine, and it met several times to turn a suggested federal bill into a framework that would work for the protection and benefit of people of North Carolina.

But the insurance companies wanted control. They wanted to be able to “pre-authorize the expensive diagnostic tests that drive up health care costs.”  Sounds reasonable enough, right?

Wrong. Last year, they forced my husband to wait two days for a nuclear stress test after a bad EKG, very nearly killing him.

They wanted to be able to “offer consumers a wide variety of plans from which to choose.”

Like the catostrophic plan a friend of mine chose with a $10,000 deductible. When she developed breast cancer, she was told her chemotherapy wouldn’t be covered because it was outpatient.

What they want is to be able to confuse people into buying something that covers little more than the insurance company’s butt.

Then they asked for a voting seat on the board of directors, and nearly everyone at the meeting said it would be a clear conflict of interest. A couple weeks later, H115 appeared, before the Institute of Medicine panel could finish its work, giving seven of the 11 seats to insurance companies, brokers and their allies, all of whom opposed reform.

This morning, committee chair, Rep. Bill Current (R-Gastonia), said he didn’t even know “why we’re bothering with this since Obamacare is unconstitutional anyway.”

Insurance Commissioner Wayne Goodwin told him it’s a good idea “just in case,” because if the Affordable Care Act isn’t unconstitutional, and North Carolina doesn’t have an exchange, the federal government would operate the exchange. Then he went on to make some proposals from what the IOM panel has worked on:

  • A seven-member board composed of people with technical expertise and no financial interest in the exchange. The board would be complemented by five advisory committees that would include insurance companies and consumers.
  • Compliance with open records and open meeting laws, something H115 lacks.

The committee decided to meet again to discuss the insurance exchange in two weeks, which gives advocates two more weeks to get the word out that health reform in North Carolina is in danger of being subverted by big business and big greed.

If we don’t stop the takeover here in North Carolina, other states will follow suit. If we do stop it, big insurance will be on notice that we’re watching and we intend to put a stop to their efforts.