My long time readers have heard parts of this story; so if you have, please indulge me this post. It's extremely relevant to our national debate about healthcare that's mostly been drowned out by corporate interests, paid-off politicians, and ignoramuses who are stupidly engaged in an ideological battle against mythological foes using false arguments fomented by fear mongering, bigotry and big time budgets.
When I think of the fears and disease my family has faced for over twenty years I'm reminded of the old Renaissance maps of the world drawn my European mapmakers in the 14th and 15th centuries. The centers of the maps are always fairly accurate depictions of the continent and known islands, though distorted from modern day maps drawn using satellite technology and modern day cartography. Along the margins of these old maps is often the legend:
My family journeyed beyond the margins of the old maps of medical technology 25 years ago, met, and battled one of these Dragons, who has since become our own. Sometimes we battle this beast daily, hourly. Sometimes it is dormant and we almost forget. It seems to read our minds; just as we begin to relax and let our guard down, the Dragon attacks with a ferocity that is always terrifying, often life threatening.
The Dragon? Cancer. Specifically, Multiple Myeloma, described by the experts as progressive hematologic (blood) disease, but in layperson's terms, cancer of the plasma cells in the bone marrow. It came raging into our lives in the spring of 1983 when my father was diagnosed. In those days, research was sparse and little was known about this rare, deadly disease. The disease attacks the bone marrow, stealing bone mass and thickening the blood. It's everywhere in the body and excruciating as the bones literally begin to break apart if left untreated. In the eighties, the only known treatments were massive radiation and howitzer-powerful chemotherapy that was generally worse than the disease itself. I watched my father fight a monumental physical and spiritual battle with the Dragon for 2 and a half years before it got him. I stayed in the hospital with him the last 4 days praying that God would take him and make the pain stop. I promised myself that if the Dragon ever attacked me, I would not go the way my Father did. I was not that brave. Witnessing my Father pass changed me forever, even in ways I didn't realize at the time. I decided right then and there that I was going to live my life with my foot pushed all the way to the floor. I was going to either burn out or wear out, but I was going to do it a full speed. But, I digress.
At the time of Dad's diagnosis, it was thought that Multiple Myeloma was environmentally caused, kicked off by some exposure to unknown toxic materials. Well, Dad had certainly been exposed. He had been an Air Force pilot during the war, and worked in the defense industry the rest of his life exposed to nuclear radiation and God knows what else. I was convinced that's what caused it, but lived with that unknown for almost 20 years.
Then the unknown revealed itself in March of 2005 when my sister called to tell me the Dragon had returned. My brother had been diagnosed with Multiple Myeloma. Jesus. Suddenly, in an instant, it became clear that the Dragon, at least in some cases, hates entire families. It's genetic in some unknown form, hiding until it reveals itself by raging through one's body with ferocity. The Dragon attacked with a vengeance - bone and organ damage; mental impairment from thickening of the blood; and the pain. The Dragon was back in all its fury.
Luckily, my brother lived in Ann Arbor, one of the centers of Myeloma research at the University of Michigan. Great advances had been made in weapons to battle the Dragon in the ensuing years since it incinerated my father. Since Myeloma is still relatively rare, only attacking about 5 in 100,000, it's not profitable for the big drug companies to fight the Dragon; so public funds and private foundations fund most research. For Big Pharma, why develop a treatment if it doesn't drive up your stock price like the little pill whose worst side effect is having a boner for more than 4 hours?
The docs and staff at U of M covered Bill up. Blood treatments, autologous stem cell transplants (cleaning your own stem cells and returning them to the body), drug therapies, targeted radiation, and finally a full-blown bone marrow transplant from my sister who thankfully happened to be a perfect match. The good news is that after almost 2 years after the Dragon returned, we had it beaten back. My brother was in remission. But to keep him in remission, he takes a drug every day. Cost? $75,000 per year.
Now, the rest of the story:
After Bill was diagnosed, he engaged in the full-time battle against the Dragon. It required extended hospitalization, isolation, and even when an outpatient, multiple visits to the hospital each day for treatments. He couldn't work. His company, while cutting his salary, continued medical coverage. Their disability program, like most companies, was piss-poor. His salary, just at 6 figures, plummeted to $173 per week. After six months, he went on long-term disability at 60% of base salary, which was taxable. At a time when he needed money the most, his income dropped by half. The family kicked in to help, saving the house and cars from foreclosure and keeping food on the table. Then it happened. The unthinkable event that insurance companies and politicians in the pocket of the insurance industry say won't happen. At 10 months, right in the middle of major treatments, his company fired him for being sick. That's right, they fired him for being sick and to cut their losses on their group coverage. Oh, they said his job was eliminated, which, of course, was a lie. To save group medical costs, they threw Bill to the Dragon and hired a young, healthy kid to do his job.
We scrambled again, got him signed up for COBRA, a poorly regulated stopgap coverage that you can buy when your company dumps you, but the coverage wasn't as good, it was unbelievably expensive, and it was for only 18 months. We hired a lawyer and went after his company. Their general counsel shot us the finger and told us to sue 'em. Our lawyer said that Michigan's labor laws had been so stripped of worker protections that he would be wasting our money to file suit. We filed a complaint with the Department of Labor. Answer? "Our recommendation is to sue your former employer." Great. The real reason they took no action was that the Labor Department didn't have the enforcement budget to investigate individual complaints, its budget being stripped by Bush tax cuts.
Bill was able to land Social Security disability for a while, but as soon as he was able to get a part time job with health insurance, they took that away. And, he got laid off from the second job after a short time. He went back on COBRA. Long story short, this is the 17th month of his 18-month COBRA coverage. Bill is ineligible for private insurance plans at any price because of his pre-existing condition. He's unemployable because of his condition and debilitated immune system. No one will hire him. His only alternative for coverage is Michigan's last resort plan, a private pool run by Michigan Blue Cross Blue Shield. This plan's maximum benefit for prescriptions? Around $5,000 per year. Remember that Bill's prescription is $75,000 per year. This life saving drug is out of his reach.
Bill's personal crisis is caused by the cruel reality of private health insurance. He had done everything right - good job with disability, health care coverage, and savings. He got sick, and his company, in an effort to save money, did the immoral thing and fired him. The brittle nature of private coverage was exposed: employment based health insurance is false security. This absurd system is run by insurance companies who make money by taking in premiums and then not paying, or delaying benefits. Sometimes companies "self insure," then pay a third party administrator to drive cost out of the system by screwing their employees. Companies that provide health insurance as a benefit are incentivized to cut their losses when one of their employees gets a catastrophic disease. Some, like Bill's company, do the wrong thing, and throw the employee overboard. Since there are no consequences for doing that, our system encourages such behavior. Unpunished, this particular company will likely do it again.
Everyone who has private health insurance is at extreme risk of losing it just when they need it most. Insurance companies pay lobbyists to pay politicians tens of millions of dollars to lie to the American people and scare them with ominous predictions and incendiary language about rationing, pulling the plug on Grandma, socialism, and other such nonsense when reform is proposed. Fearful of the unknown, the ignorant fall for it, and our health care system continues the downward spiral as costs go ever higher. Ignorance is why people on Medicare run to their nearest town hall meeting and idiotically scream for government to keep their hands off of their government program. We have the most expensive health care delivery system in the industrialized world while we brag about how good it is. Down is up, in is out, and the sky is purple in this alternate reality.
As a family, we continue to face the Dragon. Unfortunately, we face it alone and unarmed because our health care system has failed us.
Just like millions of others. It's long past time for real reform. Now.
When I think of the fears and disease my family has faced for over twenty years I'm reminded of the old Renaissance maps of the world drawn my European mapmakers in the 14th and 15th centuries. The centers of the maps are always fairly accurate depictions of the continent and known islands, though distorted from modern day maps drawn using satellite technology and modern day cartography. Along the margins of these old maps is often the legend:
"Beyond Here Be Dragons"
My family journeyed beyond the margins of the old maps of medical technology 25 years ago, met, and battled one of these Dragons, who has since become our own. Sometimes we battle this beast daily, hourly. Sometimes it is dormant and we almost forget. It seems to read our minds; just as we begin to relax and let our guard down, the Dragon attacks with a ferocity that is always terrifying, often life threatening.
The Dragon? Cancer. Specifically, Multiple Myeloma, described by the experts as progressive hematologic (blood) disease, but in layperson's terms, cancer of the plasma cells in the bone marrow. It came raging into our lives in the spring of 1983 when my father was diagnosed. In those days, research was sparse and little was known about this rare, deadly disease. The disease attacks the bone marrow, stealing bone mass and thickening the blood. It's everywhere in the body and excruciating as the bones literally begin to break apart if left untreated. In the eighties, the only known treatments were massive radiation and howitzer-powerful chemotherapy that was generally worse than the disease itself. I watched my father fight a monumental physical and spiritual battle with the Dragon for 2 and a half years before it got him. I stayed in the hospital with him the last 4 days praying that God would take him and make the pain stop. I promised myself that if the Dragon ever attacked me, I would not go the way my Father did. I was not that brave. Witnessing my Father pass changed me forever, even in ways I didn't realize at the time. I decided right then and there that I was going to live my life with my foot pushed all the way to the floor. I was going to either burn out or wear out, but I was going to do it a full speed. But, I digress.
At the time of Dad's diagnosis, it was thought that Multiple Myeloma was environmentally caused, kicked off by some exposure to unknown toxic materials. Well, Dad had certainly been exposed. He had been an Air Force pilot during the war, and worked in the defense industry the rest of his life exposed to nuclear radiation and God knows what else. I was convinced that's what caused it, but lived with that unknown for almost 20 years.
Then the unknown revealed itself in March of 2005 when my sister called to tell me the Dragon had returned. My brother had been diagnosed with Multiple Myeloma. Jesus. Suddenly, in an instant, it became clear that the Dragon, at least in some cases, hates entire families. It's genetic in some unknown form, hiding until it reveals itself by raging through one's body with ferocity. The Dragon attacked with a vengeance - bone and organ damage; mental impairment from thickening of the blood; and the pain. The Dragon was back in all its fury.
Luckily, my brother lived in Ann Arbor, one of the centers of Myeloma research at the University of Michigan. Great advances had been made in weapons to battle the Dragon in the ensuing years since it incinerated my father. Since Myeloma is still relatively rare, only attacking about 5 in 100,000, it's not profitable for the big drug companies to fight the Dragon; so public funds and private foundations fund most research. For Big Pharma, why develop a treatment if it doesn't drive up your stock price like the little pill whose worst side effect is having a boner for more than 4 hours?
The docs and staff at U of M covered Bill up. Blood treatments, autologous stem cell transplants (cleaning your own stem cells and returning them to the body), drug therapies, targeted radiation, and finally a full-blown bone marrow transplant from my sister who thankfully happened to be a perfect match. The good news is that after almost 2 years after the Dragon returned, we had it beaten back. My brother was in remission. But to keep him in remission, he takes a drug every day. Cost? $75,000 per year.
Now, the rest of the story:
After Bill was diagnosed, he engaged in the full-time battle against the Dragon. It required extended hospitalization, isolation, and even when an outpatient, multiple visits to the hospital each day for treatments. He couldn't work. His company, while cutting his salary, continued medical coverage. Their disability program, like most companies, was piss-poor. His salary, just at 6 figures, plummeted to $173 per week. After six months, he went on long-term disability at 60% of base salary, which was taxable. At a time when he needed money the most, his income dropped by half. The family kicked in to help, saving the house and cars from foreclosure and keeping food on the table. Then it happened. The unthinkable event that insurance companies and politicians in the pocket of the insurance industry say won't happen. At 10 months, right in the middle of major treatments, his company fired him for being sick. That's right, they fired him for being sick and to cut their losses on their group coverage. Oh, they said his job was eliminated, which, of course, was a lie. To save group medical costs, they threw Bill to the Dragon and hired a young, healthy kid to do his job.
We scrambled again, got him signed up for COBRA, a poorly regulated stopgap coverage that you can buy when your company dumps you, but the coverage wasn't as good, it was unbelievably expensive, and it was for only 18 months. We hired a lawyer and went after his company. Their general counsel shot us the finger and told us to sue 'em. Our lawyer said that Michigan's labor laws had been so stripped of worker protections that he would be wasting our money to file suit. We filed a complaint with the Department of Labor. Answer? "Our recommendation is to sue your former employer." Great. The real reason they took no action was that the Labor Department didn't have the enforcement budget to investigate individual complaints, its budget being stripped by Bush tax cuts.
Bill was able to land Social Security disability for a while, but as soon as he was able to get a part time job with health insurance, they took that away. And, he got laid off from the second job after a short time. He went back on COBRA. Long story short, this is the 17th month of his 18-month COBRA coverage. Bill is ineligible for private insurance plans at any price because of his pre-existing condition. He's unemployable because of his condition and debilitated immune system. No one will hire him. His only alternative for coverage is Michigan's last resort plan, a private pool run by Michigan Blue Cross Blue Shield. This plan's maximum benefit for prescriptions? Around $5,000 per year. Remember that Bill's prescription is $75,000 per year. This life saving drug is out of his reach.
Bill's personal crisis is caused by the cruel reality of private health insurance. He had done everything right - good job with disability, health care coverage, and savings. He got sick, and his company, in an effort to save money, did the immoral thing and fired him. The brittle nature of private coverage was exposed: employment based health insurance is false security. This absurd system is run by insurance companies who make money by taking in premiums and then not paying, or delaying benefits. Sometimes companies "self insure," then pay a third party administrator to drive cost out of the system by screwing their employees. Companies that provide health insurance as a benefit are incentivized to cut their losses when one of their employees gets a catastrophic disease. Some, like Bill's company, do the wrong thing, and throw the employee overboard. Since there are no consequences for doing that, our system encourages such behavior. Unpunished, this particular company will likely do it again.
Everyone who has private health insurance is at extreme risk of losing it just when they need it most. Insurance companies pay lobbyists to pay politicians tens of millions of dollars to lie to the American people and scare them with ominous predictions and incendiary language about rationing, pulling the plug on Grandma, socialism, and other such nonsense when reform is proposed. Fearful of the unknown, the ignorant fall for it, and our health care system continues the downward spiral as costs go ever higher. Ignorance is why people on Medicare run to their nearest town hall meeting and idiotically scream for government to keep their hands off of their government program. We have the most expensive health care delivery system in the industrialized world while we brag about how good it is. Down is up, in is out, and the sky is purple in this alternate reality.
As a family, we continue to face the Dragon. Unfortunately, we face it alone and unarmed because our health care system has failed us.
Just like millions of others. It's long past time for real reform. Now.
Amen
As someone said, change the name, change the disease, tell the same story over and over again in this country. What will it take to effect true reform so that the insurance companies don't have us all by the short hairs?
I can tell the same story for my son, my sister, my aunt, my cousin. Cancer, rheumatoid arthritis, lupus, scleroderma, pulmonary fibrosis, psoriasis ... and if you do manage to get on one of the designer drugs for a while (at great expense), you could end up facing cancer from the treatments.
Nietzsche said "that which does not kill us makes us stronger."
How about "that which doesn't kill us should piss us off enough so that we do something about it" ? That was me.
It's time we do something about it.
Thanks for the link, Loma. I understand that insurance companies have the population by the short hairs. I have insurance right now, but it's a precarious situation, since it's as spouse of a retiree who so far has gotten to keep his old company insurance by paying more. I expect that to be cancelled any day, and we both have pre-existings, so poof.
My question about Medicare was not asking if uninsured can get into it now, but rather wondering why can't new law be written to let some of us buy into it? I understand this would not cover people who can't pay anything. That needs to be handled, too.
Can't afford any insurance, can't afford high-risk insurance, and pricing that nobody and nothing can sustain seem to me to be separate but related issues, that might not be able to be handled adequately by a single piece of legislation.
I still have faith in the Pres, but he needs to do a rain dance, fast.
Lonamonster, the only way the quiet people will become angry is if they are persuaded that they have a reason to be. That is why I asked Bob to post on the Chron. Here, he is kinda preaching to the choir. I think most of us are already vociferous.
Bob,
Thank you for sharing this part of your life with us. Many of us have lived through the nightmare that the health care system can be. I think one of the problems with getting people to understand the magnitude of the problem, is that all the horror stories occurring at this time sort of stand alone, individually.
The AIDS quilt has helped people understand the size of that problem because so many individual stories came together in a very visible form. It makes me wonder if this could be possible for cases of abuses in the private insurance industry. Has anybody ever noticed that the crazies never attack the AIDS quilt when it is displayed? They won't go any where near it.
As Rachel Maddow recently stated, Democrats were elected by us to do a job, and now, many of the conservative Democrats appear to be unwilling to do what we elected them to do. The primary objective of the opposition to health care reform is protection from competition generated by a public option. Perhaps we could articulate that private health care, as in private hospitals and clinics like we already have, is just fine. BUT we need a public option on, specifically, insurance. Maybe if we split it up that way, it might get through. Even to the crazies.
People who are already benefiting from a public option on health care, are deciding for the rest of us, if they are willing to let us pay for our own extension of that same public option, or, to continue to pay tribute money to a corrupt insurance system. That is wrong on more levels than I care to think about right now.
Pj Carz - If you have the time, please go back and read this from Bob Cesca, and you will have a further grasp on the situation. And no, they will not allow those folks into Medicaid/Medicare.
http://www.huffingtonpost.com/bob-cesca/the-health-insurance-mafi_b_214098.html
As painful as that story is and as painful as it must have been to retell, those are the kind of stories that will/would stem the tide. Instead of saying, "I'm not for death panels" Obama should be saying, "let me tell you a story." I think most people just separate themselves from it. THEY have never experienced tragedy so they can only imagine what would happen if "government takes over". They don't realize how bad it is now.
Do any of us have an idea of how people like the brother, whose pills cost $75,000 per year, or the cancer-survivor woman, whose costs in the high-risk pool are $7,500 deductible, plus $10,000 out of pocket plus $11,000 in annual premiums before she gets a dime can get relief?
I am saddened to say, I do not see how it can come about, given the profit-motive mandate of our culture.
Could these folks be allowed into medicare/aid since they have been denied coverage?
Be kind at my naivete, I'm thinking outloud in an effort to understand.
How can this be happening to families all across America and not cause a monstrous roar from the people? The fear of dying? We are ALL going to die. It's HOW we die that matters - just as much as how we lived. In the end, it appears we are unwilling to die with any sense of dignity, and we will even pay MORE to ensure that!
Makes no damn sense whatsoever...
I'm very sorry to hear about your brother and his situation, eljefe. That sucks!
I lost a dear friend about 14 years ago to breast cancer that had metastasized to her bones and liver. She'd already beaten the breast cancer once before, but it returned and spread.
She was told her only chance might be a bone marrow transplant, except she didn't have insurance, so they wouldn't do it. She was working at the time, so didn't qualify as "indigent". Our employer offered really expensive, really crappy insurance coverage, but Donna didn't qualify for it because of her "pre-existing condition" of being a breast cancer survivor.
Sad part is, she had an absolutely perfect bone marrow donor- her identical twin sister. It was nearly a year later that she was able to qualify for the bone marrow transplant- we'd raised money for her thru fundraisers and (if I remember right) I think she finally was able to get Medicaid. I'm not sure about that part.
By then, she'd been through so much, and the cancer had progressed so much that she only lived another couple of months, even after the transplant.
Would she have beaten the cancer if she'd been able to get the bone marrow transplant almost a year earlier? I don't know. But I believe she would have had a better chance of surviving if she had.
On another note... here's a discussion at another site I go to. It's people weighing in from Canada, the UK, France and Australia (so far) about their healthcare systems. While they all agree that their systems are not perfect, only one of them said they they hated their system. The others would never, ever trade what they have for what we have in the US.
http://www.recipezaar.com/bb/viewtopic.zsp?t=310397
You'll have to sign up with the site to view the thread, but it's free.
I just thought it was interesting because it gives a real perspective/pov from people's real experiences, not the foaming-at-the-mouth propaganda that the conservative media like to claim happens.
Bob, thank you for sharing your candid story.
It serves the purpose of putting this debate in it's place - grounding us and reminding us what's important, and WHY we're fighting this battle.
Laura44 - I wish the world were run by the "quiet people", but it just isn't so. We must get angry and vociferous and remind the insurance companies and the pharmaceutical firms that we can easily boycott their entire industry as a group and bend them to our will - if that is their reaction to our individual plights and fights with healthcare.
I've heard your story, Bob. It is such a common one (change the names and a few details).
*Carol, who as a cancer survivor, cannot afford any pool coverage.
*My brother, who has HIV/AIDS just lost his COBRA this month. He has a PhD in Environmental Education. He has kinda decided that a country which has national health care AND believes in a more aggressive fight against global warming may be a better fit for him.
*Our two children on disability. I am certain they would both be dead without their "national health care" (Medicare/Medicaid).
"Of all the forms of inequality, injustice in healthcare is the most shocking and inhumane." --Dr. Martin Luther King Jr.
Yes, ironically, Michigan is a big union state. Oddly, since the unions have strong representation and their protections are contract based, non-union employees get little in terms of mandated protection. PRIRA did no good, this was an employment based plan and Bill was fired, so afforded no other protection. I spent a fortune in legal bills doing everything I could do until I gave up and went to the feds. The Labor Department I talk about is the US Labor Department, not state. We talked directly to the department rep who told us what was going on and why they would not take action.
Carl Levin strongly backs health care reform, but as you know, I'm for public finance of campaigns and eliminating private money altogether.
Jefe
Or, if you prefer, here is the classic Elvis version.
http://www.youtube.com/watch?v=FIODx1J1A_w&feature=PlayList&p=8723AA221518E21B&playnext=1&playnext_from=PL&index=58
A family crisis of illness is the worst thin I can imagine. I have been there and Bob has been there, in spades. Take a listen to this song by Joe South. I wish that more people would take this advice.
http://www.youtube.com/watch?v=Do4VZxkrLhI
If I am not mistaken, isn't Michigan home to one of the strongest Unions?
.
You say that the Michigan State Labor laws are "stripped of worker protections." I am surprised by this observation when the Unions have so much control over the elected officials and the labor ploicies.
.
Also, you say the Michigan Dept of Labor budget was stripped by "Bush tax cuts." Wouldn't the Michigan Dept of Labor be funded from Michigan revenues, and not the Federal budget?
.
While you were consulting the Dept of Labor, did you request a PRIRA? Patient's Right to Independent Review act: http://www.legislature.mi.gov/mileg.asp?page=getObject&objName=mcl-Act-251-of-2000.
.
PRIRA have proven very succesfull in restoring coverage to those who were either unlawfully fired for medical reasons or subject to adverse determination.
.
Finally, did Medicaid deny coverage or assistance to your brother?
.
Do you have any disdain for Michigan's elected representation? Both Carl and Sandy Levin top 2 contributors are the insurance industry, and the other is the legal industry:
http://www.opensecrets.org/politicians/summary.php?cycle=2008&type=I&cid=N00003950&newMem=N
.
Thanks for the discussion.
They suffer from a failure of imagination. They simply can't imagine being stripped of every asset they have and not having the physical or mental strength to fight back.
There's a guy on the chron site who repeatedly posts about the necessity of having a health savings account.
Well I have a flex account, which is essentially my money deducted from my paycheck for a tax benefit.
Just today I was notified that I finally won a battle for a reimbursement that I'd been fighting for a year and a half. A YEAR AND A HALF.
One of the problems we're facing is that americans as a people are almost totally lacking in empathy...Sure when people hear a tragic story like this you get expressions of sympathy(and a few who try to blame the whole situation on the boogieman du jour...illegals, those dang lawyers, fraud, etc.)...But the problem lies in the fact that people hear something like your brother's story, but can't ever imagine it happening to them.
Somewhere along the line, some people decided that they were special....and the bad things in the world would never touch them. They miss a simple, universal truth. Anythign that can happen can happen to them....anything that can be done legally can legally be done to them. I will never, never, everevereverever understand how a person could reasonable trust an insurance company to take care of them at a financial loss if it's legally permissable to screw them out of it.
I do find a small, cold bit of comfort in the knowledge that should the enemies of health insurance reform get what they want....they will truly deserve what they get. Of course it will the the little guys who suffer, and not the corporate masters who pull the strings of their marionettes....but whattaryagonnado
Most Americans THINK and BELIEVE they have health insurance. The sad fact is that they don't discover until far too late how tenuous that coverage is. We all hear there are "safety nets" to protect people from disastrous and devastating illness-- all to discover, too late, the lie. We must continue to reveal the true state of our medical insurance coverage -- it is shameful to continue on this way. Thanks for sharing your family's most private matters in order that we may better understand.
Bob, you really should post this on the Chron. While I hold no illusions that the right wing zealots will be swayed, I always hope that there are quiet people reading those blogs who will listen. These are the stories that people who are 'happy with their healthcare' need to hear.
Bob, I just posted this link on another of your blogs. Scary and maddening.
http://www.cnn.com/2009/POLITICS/08/17/potter.health.insurance/index.html