You see, I have this kid. He's a good kid. A great kid, in fact. He's my birthday present...born on my 31st birthday at 1:11pm (13:11 if you're number superstitious). He's really talented, too. He produced his first CD this summer, which he considers to be the beginning of his long and productive musical career.
For the past month, he's been really, really sick. He can't keep food in him, is in constant middle-bending just-shoot-me kind of pain, and has lost 20 pounds (he only weighed 165 to begin with).
The pain he's in makes it impossible for him to create to play his beloved drums. He has a great job but hasn't been able to work at all for the past 30 days. He's stubborn though -- while he's been fighting this, he taught himself to play bass and even built one from scratch. See it just below?? That's the kind of thing he does. He doesn't know how not to be creative. He's the guy who will push jazz back into our daily music lexicon, who will maybe write a movie score, who is already composing works for ensembles, trios, and big bands.
Last week his mystery disease was identified as ulcerative colitis. It's not curable, only manageable. He was put on some medication to help with the inflammation and told he should begin to see improvement within a week.
Things have gone steadily downhill since then. Instead of better, they're worse. Can you imagine seeing your son moaning in pain every single day and not being able to do ANYTHING to help? Imagine it. Do it for just a second.
Today his blood work came back. Never mind my fight with my COBRA administrator who cancelled me for some inexplicable reason 10 days ago, here's the real problem: It would appear that my always-fit, always active 20-year old son is diabetic, probably as a result of my genetic contribution. The music he gets from his dad; the diabetes from me. Now he gets to learn to manage UC and diabetes in concert with one another while struggling to regain the ground he's lost being sick for the past month.
Here's the catch, Senator Baucus. Listen carefully. My sonthedrummer may not be able to BE a drummer, because these two diseases make him UNINSURABLE at AGE 20. Where I held my breath hoping for health care reform to happen, now it's become an imperative, no longer just about me or our house, or some scary maybe heart thing with my husband. This is real life you're screwed if you don't get this done kind of living. Reform isn't just some 'nice' thing to do.
So, Senator, what do we get from you? A pile of crap wrapped up in pretty red Republican paper with a little bipartisan bullshit on the side. Under your plan, his premium could be up to 5 times the normal premium for someone without pre-existing conditions. Let's see...right now it's $230/month. You think it should be five times that? Under your plan, he'd probably land in a high risk pool with that surcharge/front-end load kicking in right away. Oh! And because my premiums for the family coverage would be over $21,000 a year (assuming I can straighten out my COBRA admin and get my coverage back at all...) I'd be TAXED on the excess? And if I *can't" get insurance, I'm forced into the 5x pool or the $3800/year fine, for which I get exactly nothing. Not one. damn. thing.
If we're going be hammered with $3800/year for failing to feed United Health et al's greed machines, the very least you could do is let him buy into Medicare or a public option. But no. Insurers wouldn't like that, and insurers are your friend. Not mine. Not his. Yours.
So...for the privilege of going bankrupt either via unaffordable insurance or via unreasonably high sanctions with absolutely no price controls or competition, you want my kid to shell out $3800/year? This is reform? How? California has co-ops already, by the way. Look how good they are at controlling costs! Only $21,400/year for a family of 4! Well done, Senator Baucus. How proud your keepers must be of you.
Imagine having to face not doing what you love, what you were gifted for, because it means medical bills will always dog you.Imagine having to make a choice between talent and health.
Imagine having to give up what you've been passionate about for over one-half of a short twenty-year old life.
Imagine having to choose. Imagine having YOU CHOOSE FOR ME.
Your pathetic effort to appease the unappeasable just rendered you irrelevant. Step back, get out of the way, and let your colleagues who actually understand this is not a game of "richest lobbyist wins" get something done.
Bipartisanship is not an option here, by declaration of the teapartiers, the birthers, the tenthers and all the others who have no balls or courage to answer this problem with a real solution. My son cannot live on rhetoric. He cannot build a life or a career on your lack of courage. If and your buddy Kent Conrad think it's a good idea to cater to the money guys, that's your problem. Don't make it mine. You had your chance to do this right. More than your chance. We put up with the lunatic town halls, insane finger-biting incidents, and racist drivel so you could have your chance. That's done now.
Get out of my kid's way and let the big boys forge a realistic pathway for him to work toward his goals. He has been a taxpaying contributing member of society since he was 14 years old. He pays his own way through school with no loans while remaining on the Dean's list and representing his college at jazz festivals around the state. At the ripe old age of 20, he deserves a better future than indentured servitude to an employer with a health plan and a Senator planning his retirement on insurance company payrolls.
I still have the naughty chair I used to make my boy sit in when he was two or three when he would defy me or behave in a way that wasn't safe for him or others. If you need to sit in it, Senator Baucus, it's right over there. Please sit in it until you learn your lesson.
If it weren't so serious, I'd be laughing. My kids know I'm not laughing because I'm too incredibly furious. I've had enough. Shut up and sit down.
cross-posted to odd time signatures
Oh no.... diabetes too? Gah! I just wrote on my personal blog about how other medical conditions can really fuck with you if you're diabetic. I've been having that issue lately. Luckily, I have health insurance through my husband's company. I can't even imagine having to give up your dream to keep a job that, to you, is soulless, just to stay insured. My heart goes out to your son and to you. I'm just hoping that the Baucus "bill" is dead in the water because it's so bad.
Posted by: Lawyer Mama | September 16, 2009 at 08:09 PM
Appeasing the unappeasible! That certainly says it all. Mad Max really mucked it up kow-towing to the Repugs. But he's just the fall guy of the moment. The entire Democratic leadership, beginning with Obama, dropped the ball big time.
Posted by: txwordpounder | September 16, 2009 at 09:24 PM
LawyerMama yeah, and it looks like the two are related...both autoimmune, both genetic. It's like God said hey, you can have talent, but here's how I'm going to keep you from getting all big-headed and gnarly about it. :)
txwordpounder: I don't see this part as Obama's job. He clearly stated what he expected. Baucus has failed to step up to the plate.
Posted by: Karoli | September 16, 2009 at 10:22 PM
Karoli,
Barely had time to let the info sink in about your son's diabetes when you tweeted it earlier this evening. Had no idea your COBRA coverage was *also* totally jacked up as well.
Mama, that's a huge load on your family's shoulders. I hope the insurance thing gets taken care of soon. Your wonderful talented son's just barely begun doing all the things he was meant to do--he doesn't need a stupid, bureaucratic, purely BOTTOM LINE thing like a "pre-existing" condition to shackle his future to wherever he might be able to get coverage.
Water on a stone. We have to wear down the rocks these Congresspeople have for hearts. No more trickles, it's time for a flood.
Everyone--if you're reading this: go to http://healthcareforamericanow.org/ and make some noise. INSIST on a strong public option in the final bill.
Posted by: Cynematic | September 17, 2009 at 12:27 AM
really well written- and unreal...and baucus's bill is a piece of shit- I just went through it...maybe MOMS need to go to DC and face these idiots and ask them what the hell are they doing ???
I am so so sorry...My new post is up at watergate summer...I have been picking at the Baucus bill tonight - its been like picking at a rotted chicken...
this bill MUST be tossed..must be...
( I am watergatesummer on twitter..anything I can do to help please let me know)
Posted by: enigma4ever | September 17, 2009 at 12:38 AM
From my understanding though all endocrinological disorders are covered under some sort of Medicaid or Medicare (I can't remember which one). My daughter who is 3 has a Endocrinological disorder as well, the opposite of Diabetes really, and I worry about her, but she will always be covered by the government if I don't have insurance. You might want to look into it. I'm just saying this because it's an option to get him the care he needs.
Posted by: Pamala | September 17, 2009 at 12:42 PM
Pamala, what Medicaid will cover varies wildly from state to state and it's quite possible that where Karoli lives, her son would not be covered. (This is not to say it's not a good idea to look into it. I'm just pointing out that the existing Medicaid patchwork lets plenty of people fall through the cracks.)
Karoli, I am so sorry about this. We all need to keep working to fix the health care system so that people like your son can get the care they need. Diabetes in particular is a disease that is much cheaper, for the patient and for society, to manage well than to manage poorly.
The way Baucus has savaged the health reform bill is practically criminal.
Posted by: jaelithe | September 17, 2009 at 08:27 PM
Wow. Great post. So sorry to hear about your son and what he's facing. That isn't what America, land of the free, is supposed to be about. Congress is really letting us down...
Posted by: Amy@UWM | September 19, 2009 at 07:51 AM
I am very sorry to hear of your son's troubles, but they are precisely that: his troubles. There is no moral justification for you to extort money from others to deal with those problems. You are very well spoken, and I'm sure that you can figure out a moral way to help your son. Agitating for money to be stolen by men with guns (IRS) and given to you or your son is one of the most evil things a person of your means can do. Shame on you.
Posted by: Kyle Varner | September 20, 2009 at 08:52 PM
Dear Kyle,
It saddens me to realize that you live in a world that revolves around one person - you. I have not agitated to extort, but I wonder whether or not you would be so quick to say "shame on you" to those who decided we should spend our precious human and financial resources on the lie called Iraq, or whether you think shame should come to those who support allowing the elderly, the poor, and the disabled to participate in a government plan.
It seems that your shame is selective, but I would expect nothing else from someone who truly lives in a world where he, and only he, is at the center.
Ron Paul's campaign manager died leaving $400,000 in unpaid medical bills. So much for that "me and only me" approach.
Posted by: Karoli | September 20, 2009 at 09:06 PM
Kyle, the other irony in your post is this: I currently pay over $20,000/year (which is more than half my income) for health insurance. I'm the one BEING EXTORTED, not the other way around. :)
Posted by: Karoli | September 20, 2009 at 09:29 PM
Yes, I would be far quicker to say "shame on you" to those who started the war in Iraq.
Currently, you are not being extorted. You are free to choose whether or not to purchase health insurance.
Kent Snyder made a personal choice about whether to purchase health insurance. He didn't purchase health insurance, and thus his estate had to foot the bill. That is no reason to go out and start begging.
Posted by: Kyle Varner | September 21, 2009 at 07:10 AM
FYI: I'm not a party hack, either! Back when Bush was president, I was equally critical of him. http://www.kylevarner.com/2007/12/26/george-bush-vampire-in-cheif/
Posted by: Kyle Varner | September 21, 2009 at 07:21 AM
Kyle, if you think Kent Snyder made that decision not to purchase insurance lightly or without a considerable amount of concern for himself and his family, think again. In one more month I will make the same decision, and the American taxpayers will ultimately bear my burden, too, because there is no way I can continue to sustain the amazing and ridiculous profits being made on the backs of me and others who cannot afford 50% of our earned income for health insurance.
What you fail to understand, possibly because of your age or your arrogance, is that we are operating in a system that neither benefits the ill nor rewards the well. The only folks who benefit are the ones at the very top of the food chain.
As you will discover (should you actually manage to finish studying in your chosen specialty and become certified), you will spend a far higher percentage of your practice income trying to get paid than actually practicing medicine. Good luck with that. I sure hope you don't have to beg or have the misfortune of being stricken with an illness at a young age. It is, to put it mildly, a very difficult situation.
Be well.
Posted by: Karoli | September 21, 2009 at 07:22 AM
Just catching up after the holiday weekend. Like Cynematic, I saw your tweet about his diabetes - but did not place it into the context of all this. I had no idea he'd been doing so poorly these last several weeks. I wish there was something I could other than continue to support health care reform that makes sense.
Staying healthy should not bankrupt families. "Pre-existing condition" is a term that needs to be made extinct. You should not need to allocate half your income to an insurance company. The Baucus bill is NOT the reform we need.
Posted by: Donna | September 21, 2009 at 08:23 AM
Thanks, Donna. I completely agree, and I'm in the same boat -- all I can do is push forward with a voice to the reforms, because otherwise, I'm helpless and voiceless. I'm grateful to be able to do that much.
You know, for all these months we've been thinking that Olympia Snowe was a barrier, and yet, after reading her amendments to the Baucus bill and her spoken opposition to it as it stands, I'm thinking she's really working toward something meaningful, and has been an obstacle to the bought-and-paid for men on that committee. I think we should hail her as someone worth supporting. She's been fighting that battle by herself all summer long.
Posted by: Karoli | September 21, 2009 at 11:06 AM
I have no intention of running around in a circle trying to get paid. I intend to run a third party free practice. The kind of primary care office where you can see a doctor for $50 (they exist, and not just for primary care). If you want to see health care costs go down, we have to get out of the insurance model. Insurance should be for catastrophes only, not for daily care.
Further government involvement will make things get worse. But none of that should matter. To take from one person and give it to another, no matter how great their need, is theft, pure and simple. It is the moral equivalent of mugging someone at gunpoint.
Posted by: Kyle Varner | September 21, 2009 at 02:04 PM
From an outsider's point of view, it has always amazed me that the USA -the 'richest' and 'most powerful' nation- could afford military equipment by the billions but cannot spend a dime to look after its sick.
I do agree with Kyle that the insurance model is probably not the way to go. I compare health insurances here (modeled after the ones in the USA, some are the same companies) where I live to our 'regular' health coverage, and insurance is not the way to go. But, of course, change should start by covering everyone.
I feel for you Karoli, I also have an autoimmune chronic illness, and if I had insurance instead of my 'regular' health provider, I would be broke, or living back at my mom's like my brother who has health insurance and the same illness as I. I compare what my 'regular' health provider covers, to what my brother's health insurance covers, and let’s just say I won’t be hiring health insurance any time soon.
Where I live, the main health care system is not insurance based, although there are private health insurances. Here, a % is deducted from your pay-check for health coverage; about 3% for childless people and 4 or 5% for parents with children under their care -regardless of the number of children. If you don't work, you're still covered through the Government (who has its own health provider). Your health provider is an entity which has its own doctors, labs, hospital, but it also hires third-party's services (mine for example has an outsourced lab for most blood-tests). Although you pay for your health coverage through your employer, you get to choose the provider you want (not your employer). Health providers cannot deny you coverage for pre-existing conditions if you pay for your insurance through your employer (if you ‘hire’ it privately, they can and the cost is usually higher). Almost all people who are employed pay it this way, but you can ‘refuse’ if you want and pay privately. You can have the ‘regular coverage’ and pay for another provider, a health insurance, or make go to ‘private’ practices (the doctor’s own practice) if you wish to. Health insurances (just like the ones in the USA) are only used by people with a lot of $$$ or who can benefit more from some 'perks' such as treatment abroad if your condition cannot be treated here.
As for copayments, under 'regular' health coverage you also have to make 'copayments' (the amount varies depending on the health provider) for doctor visits, labs, prescriptions, CAT scans, etc. Just so you have an idea how much copayments are, my health provider's fees are 2dollars per visit for gynecologists, pediatricians and internal medicine; 4.3dollars for other specialized doctors; 4.3 dollars per prescription (some 'basic drugs' are less); 36.3 dollars for a TAC scan; 6 dollars for labs (some are less expensive); 5.4dollars for emergency visits (which covers all labs, tests, etc you need while at the emergency room); and 'house-calls' are free (you can request a doctor to come see you, and he has all day to come in 'regular' calls and 3hs if it's an 'urgent' call). My provider is one of the cheapest, the most expensive charges about 3 times what I pay for copayments. My brother’s insurance only pays for 40% market-value of medicines; he doesn’t have copayments for consults, but does for labs and other tests. One of the 'drugs' I take costs 27.3 dollars per 48pills-box if not purchased through my health-care provider; I need 4 boxes a month, that's 109.2 dollars -or 15% of my monthly income, quite a good salary here- just for one of the 'drugs' I take. My brother would pay 109.2 dollars for that medicine, I pay 17.2dollars.
I also need special physical therapy; the copayment is 8dollars for 10 sessions (approx. 1 month), if I pay for it 'privately' it is 54.5 dollars. My health provider, since I need it, pays for it without treatment-length problems (has been paying for over a year). My brother’s insurance covers 30sessions per year, that’s not even 4 months; and yes, he also has a copayment.
My regular health care provider also covers dental health. They cover a certain amount of things a year, and don’t cover ‘aesthetic’ procedures (brackets). It has been enough so far. However, this is one of the things I believe needs improvement, that only x amount of treatments are covered. By the way, my brother’s insurance doesn’t cover dental health.
Our system is nowhere near perfect, it still need A LOT of improvement, but it beats having to sell your house to pay health-related bills, or go broke, or not be able to see a doctor/have treatment any day.
Posted by: Happybell | September 22, 2009 at 10:07 AM