The US Supreme Court will issue its ruling on the Affordable Care Act soon, and the closer it gets, the more anxious I feel.
What will we do if they overturn the law? There are no guarantees anymore. Not with this court.
This battle is not about what's best for the American people; if it was, we would have some sort of national plan to guarantee Americans access to health care. This is about more money for the people who already have too much. It is about corporate ownership of our government.
There are still people who believe the "free market" can handle health care. But then, there are still people who believe tobacco isn't addictive. In both cases, they're wrong.
I'm tired of the current popular view that there's always "another side" to a story. Sometimes that other side is just a lie that doesn't deserve repeating. The other side to this story is that Big Insurance, Big Pharma and the rest of the Medical Industrial Complex want to keep making obscene profits and they don't care how many people die in their pursuit of more money.
Mike died because no one would allow him to get a colonoscopy until it was too late to save his life. Why? Because a birth defect that leaves one vulnerable to colon cancer is a pre-existing condition. Because a student who's hoping to have a job that offers health benefits in a couple years is too much of a credit risk to bill so he had to pay cash up front, which he didn't have.
It's only about the money in America. Human life matters less than the profits of the huge corporations that own us.
The Affordable Care Act is already a massive compromise that promises more profits to health insurance companies, but those companies don't like the controls it also put in place on their greed. They can't put caps on care, they can't deny people coverage because of pre-existing conditions like birth defects or childhood asthma, they can't boot you off as soon as you get sick, they have to allow young adults to stay on their parents' plans until they're 26, they have to fully cover cancer screenings (although they find ways to charge consumers money, such as anesthesia for colonoscopies). They want no limits on their profit-seeking.
How many people have to die before we get it right?
Believe me, I won't stop working toward a health care system that offers access to everyone, no matter what the Supreme Court does. I'm in this for the long fight.
I suppose Mike would've called it playing the dead kid card.
French Broad Chocolate Lounge, purveyors of fabulous, decadent chocolate, had a contest on Facebook, asking people what makes chocolate special to them.
I answered with two memories, one about my father and one about Mike, and I won one of the boxes of chocolate.
I got my love of fine chocolate from my father, who hoarded the good stuff and let us eat Tootsie Rolls. We knew where he kept it, though, and we all sneaked a piece now and again. Then on his birthday and at Christmas, we each bought him a pound or two to replace what we had stolen.
My father died the first week of January in 1990, two weeks after Christmas. As we sat around the big dining room table the night he died, my sister Sally sighed and said, "I used to steal his chocolate. I got him two pounds of dark chocolate buttercreams for Christmas to replace what I took."
One by one, our eyes lit up. We all had done the same thing.
We found about 7 pounds of good chocolates. My stepmother arranged them lovingly on a huge platter and held it high over her head.
"Lester," she said, "you're gonna share."
We dove in like seagulls at a beach picnic, poking holes in the bottoms of the candies to see if they were what we wanted, and if they weren't, putting them back on the platter. We finished off the platter in an hour.
In 2008, chocolate was one of the last things Mike could eat. In fact, it was the last thing he ate.
The night before he died, we sat together, watching "Star Trek: Deep Space 9" and nibbling really expensive dark chocolate. The Star Trek episode was from the fourth season, the one where Worf arrived on the station.
"You know, Mom," he said, "I'm having a really good time here."
He weighed about 85 pounds, his body was wracked with pain and broken in so many ways. He had been neglected by our broken health care system, treated as though he wasn't worthy of saving and left to die before the doctors at Duke University Medical Center took him in. By then it was too late to save him.
He was just 33, and the way I saw it, robbed of 50 years.
But he was happy to have the chocolate, Star Trek and me.
I treasure that memory because it exemplifies who Mike was. He lived in the moment and appreciated each bit of joy that came his way, especially if it came in the form of chocolate.
I wish I could share this box of chocolate with Mike and my dad, but I'll have to keep it all to myself. Damn.
People in this country who are sick see the health care system in a worse light than those who are well, according to a new poll by NPR and the Robert Wood Johnson Foundation. They are more likely to believe cost is an urgent problem, that health care personnel don't communicate sufficiently and that the quality of care has gotten worse in the last five years.
Even people with "good" insurance are paying more for their care, and medical bills count as a factor in two-thirds of bankruptcies in America. Insurance and pharmaceutical companies are very good at squeezing customers, hospitals and physicians, although they seem to be plenty generous with politicians.
Nearly half of sick people surveyed said the cost of care caused financial hardship -- and that included people with insurance. About a quarter of those surveyed said they had a problem with insurance not covering care in the last year.
For example, insurance companies often deny coverage of a colonoscopy if it is performed in the same building as the gastroenterology practice, and they won't tell you it's denied until after the procedure is done. That's $2,000-plus, and it's one of the most common stories I hear.
One in six sick people (sick is defined as someone with a serious or chronic illness that requires medical care or who has spent overnight in a hospital in the last 12 months) said they were denied the care they needed because they couldn't pay or because their insurance wouldn't cover it.
Among people without insurance, 40 percent didn't get the care they needed.
I don't doubt that because for two years, Mike tried to get a colonoscopy in Savannah, Ga., but couldn't because the gastroenterology practice demanded $2,300 up front. Because he was uninsured (and uninsurable because of a birth defect that left him vulnerable to colon cancer) and a student, he was a financial risk and so they wouldn't bill him for the procedure. Had I known this I would have put it on my credit card, but he didn't want anyone to worry about him, so he never said anything until it was too late. He hoped he would be able to finish college and get a job with health benefits before he got sick and needed care.
Sick people also described problems with the care they received, such as doctors and nurses not communicating with them or with each other, wrong diagnoses, inappropriate tests and wrong medications.
Seven in ten sick Americans say the influence of health insurance companies on treatment decisions is a major reason for problems with quality of care. More than half believe people getting too many unneeded tests or drugs is a major reason for quality of care problems.
Ninety percent said they believed hospitals, pharmaceutical companies and insurance companies are charging too much for care. A majority also said people need to take better care of themselves, and nearly three-quarters say their doctors don't discuss broader health issues with them.
People who aren't defined as sick don't see the system in a much better light, probably because they know someone who is sick and have seen the horror stories first-hand.
Yet people are pretty evenly split on the Affordable Care Act. What that says to me is that the billions being spent on advertising and opinion-shaping by the Medical-Industrial Complex is paying off. What it means is that tens of thousands of Americans will continue to die prematurely because of corporate greed.
For more on the survey, visit http://www.npr.org/blogs/health/2012/05/21/153019327/poll-what-its-like-to-be-sick-in-america?ps=sh_botprev
From the Pragmatic Progressive: I only know this woman's first name, Midge. I assume she lives in New Jersey because the closest hospital to her was in Hoboken. But her story is all too common. "Let's talk about insurance companies. My husband Dan became very ill last Friday. He rushed in from work unexpected. He was weak, shaking violently and on the verge of passing out with a 104.2 fever. I knew how dangerous that was for an adult and immediately rushed him in a cab to the closest hospital which was Hoboken University Hospital. They attended to him immediately and said he had a very bad infection and was septic. After days in the hospital it was determined he had sepsis and the bacteria in his blood was ecoli. He went through several days of being very sick and was hooked up to all kinds of medication and they tell me I saved his life by getting him there when I did. The good news is he's doing better and was released with intense antibiotic treatment at home for 21 days. Sounds like a happy ending right..? ...WRONG. The telephone rang at 4:00 yesterday afternoon at the hospital and they wanted to talk to Dan Hough, it was a representative of Cigna. I saw his face go white as she said he was in an out of network hospital and Cigna was not responsible. Really???? We didn't chose this hospital for a bruise, a twisted ankle etc. we choose it because his condition was urgent and it was the closest one to us. As he tried to explain what had happened and tell her that he was never told of this network issue she said he should have called his primary care physician..well we just moved here and we don't have a primary care physician, we moved here two weeks ago. The hospital never told us about this being an issue and we had a case worker who was arranging for home care if needed, she never said a word...but I'm getting off topic... This Nurse consultant kept trying to trip Dan up... a very sick man... to catch him in a lie as he struggled to explain she said "Just consider this an education" ...so folks looks like we are in for another fight. We asked why they did not call us immediately and perhaps we could have changed hospitals although Hoboken said we would need an accepting physician. Again, we do not have a doctor. Dan's treatment could not be interrupted, his life depended on it so we felt helpless..seems Cigna does not understand that. So a life threatening illness followed by abuse from a "caring Cigna nurse. Yup, it's all about money. They have several pages on facebook and they talk about how they are different and how people are not seen as a number..really? PROFITS OVER PEOPLE it's been that way for a long time and once again I am feeling the sting of what this really means to people. I am asking you to help, if you know Dan and I please copy this story or go to their fb pages to ask them why they would punish us for doing what was needed to save a life. Ask them about their caring treatment to a seriously ill patient. The fight is on, I'm not rolling over for this because it was life or death and Cigna is afraid they will lose some money..Yeah sure Cigna, you care about people, they are not just numbers to you! I'd like an apology from the Cigna nurse, perhaps she would like to know they had to take his blood pressure twice because he got so upset." Insurance companies will go to great lengths to deny payment; this story is just one of millions out there. What's yours? You can e-mail it to me at leslie@wnchealthadvocates.org.
I went to a party the other night and got to meet Thom, a friend of my friends Christopher and Bruce. Thom flew in from Toronto for a few days to visit, and we got to talking, first about gay marriage (Thom is legally married to his partner and Canada has not fallen apart as a result), and then about health care. So, does he hate Canada's system? Nope. In fact, he is grateful to be able to get quality health care. In Canada, as in every industrialized country except the United States, health care is seen as a human right, and people don't die because they don't have health insurance. "What do Americans have against people getting health care as a basic human right?" Thom asked. No one could answer him. Thom talked about getting sick while he was visiting England, and he was cared for and never billed a cent. "I worry about getting sick here," he said. A recent study by UNICEF ( http://www.unicef.org/media/files/ChildPovertyReport.pdf) placed the US 20th out of 21 developed nations in child health and safety; Canada placed 12th. The US scored rock bottom on the percentage of children living in poverty, at just over 21 percent; Canada placed 15th at about 14 percent. Study after study places us behind all the wealthy nations in health care outcomes, and behind some developing nations as well. Fifty years ago, we were undisputedly number one; today we're among the worst. Why? Because 50 million Americans lack any access to care and millions more are stuck in high-deductible plans that keep them from getting regular care. In Canada, as in every other industrialized nation, people may wait awhile for elective surgery, but they don't die at the rate of one every 12 minutes from a total lack of access. They have universal access to care as a basic human right. Interesting concept, isn't it?
I am really happy that President Obama came down firmly on the side of human rights yesterday, but it was the day after voters in North Carolina decided to institutionalize its ban on gay marriage by enshrining it in the state Constitution.
Unfortunately, the amendment went further than banning gay marriage. It defined marriage as between one man and one woman, and it said the state would only recognize legal marriage between one man and one woman. That takes away hard-fought rights that had been gained by both gay and straight couples, and that's where health care comes in.
Couples who were granted domestic partner benefits by municipalities and corporations will lose them. People -- adults and children -- will lose health care coverage. Partners will lose their rights to make end-of-life and other health care decisions for the people they love. Hospitals will be able to deny them visitation rights, although I would hope most hospital personnel are more compassionate than the people who voted for the amendment.
Women who aren't legally married will not be afforded the extra protection of domestic violence protection laws. They will be able to press assault charges, but the orders of protection that keep their batterers away from them will only be for legally married people. If this sounds far-fetched, look at Ohio, where at least three men convicted of domestic abuse are being released under its similar gay-marriage ban.
In a country where religious beliefs aren't supposed to become the law of the land, supporters of the amendment raised praises to their God for its passage and bragged that they had made sure the law followed God's commandments. Our federal Constitution is supposed to prevent such abuses of power.
And for those who didn't think this issue was important enough to get out and vote on, shame on you.
Under this new law, thousands of domestic partners, both gay and straight, will lose health insurance and domestic violence protections. Some will die. I don't think this is what God intended, people.
So, those of you who think this is a good thing, go ahead and pump your fists in the air and shout about the majority having spoken, but we will get this thing repealed or overturned because this is a country where justice usually prevails, even if it takes a generation or more.
Hogan Gorman was a model and actress in New York, working as a cocktail waitress, and like too many Americans, uninsured, when the unthinkable happened: she was hit by a car.
She was told again and again that the accident should have killed her and then sent home from the emergency room with a neck brace and some pain pills. No MRI, no overnight stay for observation, just a neck brace and some pills.
Naturally, she couldn't work, so she lost her job. She visited doctors whose interest in her case waned when she told them her insurance status. When the state's no-fault insurance began to pay for her visits, she was treated a little better, but the pain -- she had several herniated discs, damage to her knee and swelling of her brain that caused her to have constant headaches and persistent memory troubles.
Through all this, she maintained her sense of humor most of the time, but it became increasingly difficult as her pain persisted. She endured gut-wrenching pain just getting out of bed and hobbling around her apartment.
She went to apply for food stamps and found she had to eat on $4.70 a day. Try that sometime. She was able to eat one meal a day.
When her money and her credit ran out, she applied for Social Security Disability. After 10 months, she did start getting checks for about $700 a month -- certainly not enough to live on in New York. She sued for damages, but the case wouldn't go to court for two years after her accident.
After the no-fault coverage stopped because she wasn't getting any better, Gorman applied for Medicaid. The doctor there was nothing less than cruel. He belittled her and called her uncooperative when she refused to remove a bandage the day after knee surgery. Her surgeon had cautioned her to leave it on for a week, but the Medicaid doctor didn't care.
Fortunately, she got Medicaid, but a computer glitch cancelled her food stamps card on a Friday afternoon, forcing her to eat rice and ketchup for three days before she could visit the food stamps office and find out what was wrong. The woman there refused to help her and threatened to call security if Gorman didn't leave.
All of this sounds very familiar to people who have been sick or injured and don't have insurance. They're too often made to feel like trash. People assume they're lazy bums because they aren't working and need help.
I read the book in two evenings and cried as I saw Gorman endure indignity after indignity, just as Mike did. Fortunately, Gorman survived; better than that, she triumphed. Her book is a remarkable tale, partly because she was able to remain standing despite all the abuse and neglect.
If you truly want to know what it feels like to be sick or injured and uninsured, this is a must-read book. To learn more or to buy the book, visit http://www.hotcripple.com.
My husband is on vacation this week and I'm not. So, he offered to take me out for a beer after work and then to dinner last night.
I got to the Altamont Brewing Co. a few minutes after he did, and when I said I wanted to think about what to order, he said, "You want a St. Terese's Pale Ale."
He's not usually the type to order for me, so I did a double-take as he turned over the beer menu to show me why.
Altamont chooses a charity every month and then chooses a special beer each day. For every special beer sold, the charity gets $1.
This month's charity is Life o' Mike.
I was floored. But when I met Altamont's owner, Gordon Kear, I knew how it came to be.
I first met Gordon at the Dale Yeah! music festival in Black Mountain last summer. We talked awhile and he said he liked the sound of my mission. I gave him my card. He had several charities lined up, so he slipped us in for this month. He was planning to call me this week to tell me, but I happened in there before he called.
So, if you're thirsty during May, quench it at Altamont Brewing on Haywood Avenue in West Asheville. The bar has a variety of local beers, but you'll want the beer of the day, of course.
I met Julia Robinson at an event in Hendersonville, NC, yesterday. The Truth and Hope Poverty Tour of North Carolina, sponsored by the NC NAACP, the NC Justice Center, the Institute for Civic Engagement and Social Change at NC Central University, and the AARP, stopped in Hendersonville, and Robinson was there to tell her story. Derrick Hemphill Jr. was her son, a 20-year-old recently discharged from the Navy(officials say he received a general discharge under honorable circumstances), who died in police custody April 3 after being pepper sprayed. "He was unarmed," Robinson said. "He was a good boy." Police say Derrick was suicidal and was resisting arrest. They put him in handcuffs and leg irons, then sprayed him. He died on the way to the hospital. If Derrick was suicidal, the police never should have pepper-sprayed him. There are better ways to subdue someone with a psychiatric illness -- and let's face it, if someone is suicidal, he has a psychiatric illness. After meeting Julia and reading up on the case, I have questions too. For example, was he discharged because he had a mental illness? Why wasn't he being treated? Was he discharged to avoid giving him proper treatment? The grief is so new, so raw, she hardly is able to function. "I can't think," she said. "I've just gotten stupid." "Not stupid," I told her. "You're overwhelmed by grief." I told her about Mike and how long it took me to be able to even sit still and concentrate enough to read a book (almost three years). I assured her she'll survive and she will be able to function again, but she will never heal. It will always hurt because you're supposed to outlive your kids. Robinson wonders whether her son would have been pepper sprayed if he had been white -- something every person of color wonders. In fact, yesterday's event kicked off with the story of a night of terror in the predominately African-American Green Meadows neighborhood March 8, when police officers fired dozens of shots at a man who had stolen a Playstation. The side of the Union Grove Baptist Church is pockmarked from bullets, and four nearby homes were hit. Barbara Smith was in her home with her 14-year-old son and her 1-year-old grandson when the shooting began. "My first thought was the kids," she said. "It was terrifying." Three officers have been placed on paid leave while the incident is investigated, but no one has been fired, and the only person charged with a crime is the man, who also suffered gunshot wounds to his arm. "He was running away," one neighbor said. "He was unarmed and he was running away. The police knew who he was and they could have gone and picked him up the next morning." Instead, they chose to fire dozens of shots in a residential neighborhood, any of which could have gone through a window and hit an innocent person. This wouldn't have happened in my neighborhood, I guarantee it. "When they shot into those houses, what they were saying was that they didn't care about this community," said community member Tony Strickland. Would the police in Virginia have pepper sprayed a white youth? Would Hendersonville police have opened fire in a middle-class white neighborhood? I don't know, but I doubt it. I believe we are much quicker to judge and act against people of color. Just because we have an African-American president doesn't mean we live in a post-racist society. Julia Robinson wants to know what happened to her son, and she deserves the truth. Police say he was resisting arrest, but even is that's true, he didn't deserve to die. Julia and I hugged and cried over the loss of our children from injustice, and the men they would have been had they lived. We will never get over it, and I was honest with her when she asked if it gets better. "You will survive and you will function, but your life will never be the same," I told her.
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