Cross posted at The Daily Hurricane: 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.
Here's the story of my brother's battle with Multiple Myeloma, and how our health care system has failed him.
Cross posted at The Daily Hurricane: 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:
"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. 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. His only alternative 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 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.