Tweet
There’s all the content we read and write about health care reform.
And then there’s real life happening in the background.
My aunt’s breast cancer is back, and with a vengeance. She had a lumpectomy and lymphectomy last year along with chemo; two weeks ago, her physician told her not only was her antibody titre elevated but her liver was inflamed.
Further examination found the cancer not only in her liver but in her spine.
They are re-starting chemotherapy as soon as the surgeon can put in her port again, but they are also "shopping around" for a cancer treatment center.
I used quotes because there is no shopping except in the broadest sense. My aunt and her family would prefer she went to the most highly recommended place — a university-based program here in state — but it’s not an option.
Her health insurance company said it would not cover treatment there.
Perhaps calling it a "death panel" instead of a health insurer would be more accurate.
I wish was less hopeful about the side trip she’s going to make en route to a different treatment center. Being an intensely devout Catholic, my aunt wants to make a stop before her consult at the cancer center and visit the chapel of a monk whose life and post-life are being evaluated by the Church for possible beatification. There’s a weekly service for the anointing and blessing of the sick; at this point such a blessing can’t hurt, might help, and it’s not going to be denied by "death panel."
I’m surprised the "death panel" doesn’t actually recommend an anointing…
[sigh]
Don’t worry about my aunt or her family, expressions of sympathy aren’t necessary. My aunt has far more coverage than a majority of Americans due to her and her spouse’s employment. This is really just a random expression of frustration over the right-wings’ co-option by health insurers which really aren’t in the business of health, while real people pay the steepest price in so many ways. But do share your own similar frustrations here in comments, because I am certain my family isn’t the only one dealing with the frustrating hypocrisy of our health care system.
What passing and idle thoughts and observations do you have on health care today?
20 Comments
One additional bonus my aunt has going for her: her son and her sister are both health care professionals who are evaluating all the medical gobbledy-gook into plain English for her. They are effective advocates who can cut through the crap most Americans get instead of real information.
I like to think of my aunt’s two advocates as a “life panel” who’ll keep damage from the “death panel” at a minimum.
If only every American could have similar resources when navigating challenging health problems…they’d probably have better outcomes and care would be cheaper and more effective since well-educated advocates are likely to stop unnecessary testing and ask more pointed and direct questions of health care providers, saving a lot of time.
People of faith are encouraged to go to http://www.faithforhealth.org to get news about the national interfaith communities working together to educate their members about health care and promote passage. They sponsored a 40 minute conference call with the White House this afternoon that can be heard on an ongoing basis at http://www.blogtalkradio.com/4…..th-Reform.
I hope to write up a diary about the 40 minutes and my reflections on the caller questions and White House answers and a report on what 30 different denominational and organizational faith communities are doing and pledging to do in the coming 40 days, encouraging people to “take a pledge” to work for health care reform in their faith congregations and among their friends, making calls to reps, attending events, etc.
May the Lord be with your aunt and the family as a healing presence.
Blessings to all,
Hard for me to wrap my head around the ‘death panel’ stupidity. When my Dad
died, there were no advocates. His autopsy showed he didn’t suffer from
the ‘ailment’ his doctor was treating. It was the most devastating time in my life.
Hence, a few years later, when my Mom was diagnosed – I gathered every bit of information and guidance available. I became her advocate against all comers. She did die. But she died at home; on her turf, her terms.
Your aunt’s two advocates are a blessing for all the reasons you outline – and more.
My uncle’s HMO murdered him.
He developed prostate cancer and his HMO delayed and denied treatment until my uncle conveniently died.
My sister is a doctor, she had oncologist friends review his medical files, and all agreed my uncle could be treated — but his HMO simply. would. not.
My uncle was a nice guy and wouldn’t sue or threaten to sue, because he couldn’t believe the “nice” doctor assigned to his case (a former gynecologist, by the way) wouldn’t treat him, if treatment was possible.
My uncle died 20 years earlier than his siblings because he was a nice guy and his HMO wanted to make an even bigger profit.
All the more reason to support those who are supporting the public option.
As you may know, 60 members of the House made it clear they won’t vote for a bill without a public option.
Between yesterday and today, FDL and partners raised over $150,000 for progressive members of Congress who agree to draw a line in the sand over a public plan:
http://campaignsilo.firedoglak…..nd-rising/
You, too, can offer carrots to these progressive politicians at ACT Blue:
http://www.actblue.com/page/theytookthepledge
As I wended my way thru the healthcare mess when I got a neurological movement disorder ( it’s genetic with me) I often thought that patient advocacy should be a priority to help the ill navigate both the insurance corps and the ignorant doctors.
I pretty much teach every doctor I see about Dystonia as so very few know anything bout it and therefore, it is not treated or misdiagnosed frequently.
I was what the medical system considers a “zebra” because my condition is so “rare”. turns out there are more people with Dystonia than MS, but there’s only so much the medical establishment can do to “treat” it and they hate to admit they are know-nothings when it comes to the brain. They would just rather pretend it doesn’t exist unless there is a new, costly “treatment” they want guinea pigs for.
I was on insurance when I got this stuff and I had to fight with my insurance for every dime once they found out I had a chronic condition.
Thank the gods Clinton was in the WH or I never would have gotten Disability, medicaid or the surgery that saved my life. And I had to find out about that, because my neurologist didn’t know a thing about it.
I can’t wait for Obama to cut my treatments which enable me to at least work part-time in a “cost saving measure”
I don’t trust this guy or the gov at all anymore.
I hate to say it, but if I had what your aunt has, I’d just get enough morphine to go quietly out of this life, I have suffered enough thankyouverymuch and I don’t intend to suffer anything else just to stay alive.
marchan (2) — thanks for the info.
brook (3) — while having the best advocates will be no guarantee my aunt will survive this next battle, at least she will have the info she needs to give it a good fight if that’s her choice, and the info to be in control of her treatment if only palliative. I wish your father could have had the same, but at least you were able to be there for your mother — and as a mother myself, let me say that is the finest gift you have given her. Bless you.
judybrowni (4) — my mom has been a nurse her entire career; she’s had to explain so many times that it was not the doctor who discharged a patient “too early,” but the insurance company who did so. Doctors and nurses are frustrated and angry about having their hands tied, prevented from providing the best care for their patients because of profit margins. I wish it could have been different for your uncle, but you are now a intensely passionate advocate for health care reform for this personal tragedy.
Kassandra (5) — we’re not done yet, with either the Obama administration’s chance at reform, or with my aunt’s life. We’ll keep fighting the former, and we’ll follow my aunt’s wishes as much as we possibly can. Our biggest challenge is changing the system from a profit-oriented model which requires patients to fight the system, to one which actually encourages healthier living and real patient choice.
Rayne,
We fight on as best we can with the hope that at some point soon the murder by spreadsheet will stop. I hope that time comes soon enough for your extended family. Please accept all the physical and emotional healing energy that Cbl and I are sending your family’s way.
Thanks for the post, I had just signed on before coming here. I had planned to be in the call, but then could not.
My gentle or sad thoughts and prayers for the people here. The stories remind me of Obama’s remark about being in a hurry for health care because of all the stories he hears…we know what he is saying. Do we know what he means? I am so not ready to be done yet with what he wants to do. Dan Balz has a good piece about why doesn’t he make it clearer.
Rayne, Thank you for the post…My best.
(((((Rayne)))))
(((((Rayne’s Family)))))
Sounds like your aunt has great support. I’m glad to hear it. All y’all still have my best wishes…even with resources this is a hard, hard thing.
FunnyWheelieDiva
Dear Rayne, blessings and grace to you, your family and those who care for you. Pleae help your dear one in this place you find yourselves. If I can possibly offer a bit of comfort- despite her illness, she will not die today, and perhaps, not tomorrow. As hard as this time and circumstance are, you are all living in this moment and this moment has great truths to reveal – about life, and possibly, the end of life. It can be the great seive – separating the meaningfull from the mundane. You are in my thoughts.
touching post rayne, thanx for writing, sharing and educating the rest of us
Eli is upstairs at the Mothership!
Great Moments in False Equivalency
Thanks, Rayne. Every family has a story to tell. Healthcare cannot be profitized, except by the profiteer and the corrupt of spirit. You remind us, and I am living, the reality that one never knows when chronic becomes acute, when life becomes death.
The high-livin’ high-flyin’ powers-that-be should remember that they, too, and those they hold most dear, are mere mortals who are one step away from being at the caprice of their own health.
Maybe considering that would give them enough pause to temper their tongues and resolve their consciences.
My condolences go out to you and yours. There are so many that have walked in your shoes with less resources. Its too bad that the people barking about socialization refuse to see how badly they are being used, and how we all need to pull together to get reform passed. Healthcare is not a business, what we have now is broken for all except the corporate elite.
My son had an accident with a table saw – nothing cut off, but a sliver of wood shot into his gut muscles. He pulled out most of it, but the wound kept weeping. He checked what exploratory surgery would cost and it was too much. Took all summer for it to heal and he was doubled over with discomfort. He is an outdoorsman and guide and was out on a trip when the sliver worked its way to the surface. He got out a knife, sterilized it in the fire and cut it out.
That’s just not right. This country can do better.
Rayne, I look forward to reading what you have to say, even though I’ve become quite irregular here. You write from the marrow of real life, its joys and sufferings. AdAstra (formerly NZ Expat)
Rayne, – is it by chance Father Solanus?
I’ll be 65 in a few days and I got a helluva birthday present from my Blue cross at work. My insurance premium went up from $28.00 to $42.00 a week and my inhaler prescription went from $25.00 to $85.00. That’s a total cost increase for the year of $1400.00, so now I have to pay $3200.00 a year for my health insurance and prescriptions plus $100.00 for medicare and a prescription part D of at least $70.00, so I will have to pay over $3300.00 a year. With all the co-pays for doctors and test and hospital bills (I’m still trying to pay off a $1200.00 hospital bill) Yea I’am ready for a plan where I don’t have put off medicine and doctor visits and test till I have the money. I’m already paying thousands of dollars for my health care so tax me and give me a no out of pocket payments so I can have peace of mind. I have enough to worry about with everything but my income going up. I physically hurt but I can’t quit work or even take sick days because I only work part time of 24 hrs a week and have no paid sick days or vacation days. I have been working since I was 13 yrs old, 53 yrs!
I am more than worried, I am scared of what will happen to me when I get to sick to earn a living or become unable to take care of my self.
I need a safe haven from medical expenses. I am not unique out here, there are millions of us out here who have served this country and it’s companies. Where is our golden parachute?
4
Thank you all for your kind words and support. We are all of us living and dying similar stories, all of us know someone who has been badly impacted by our health-care-for-profit system. They fuel our fight for change. For me my aunt is a reminder that somewhere there are women like her who do not have any choice about treatment and will receive none, that women like her will have only the commiseration of family and no advocacy to see them to a certain outcome. In spite of the “death panel” insurance coverage and thanks to pure luck of resources, my aunt will have some chance at controlling her outcomes and likely will have more if limited time with her grandchildren.
Kathry in MA (15) — oh my, hope he is doing better now. Can’t imagine the pain he must have been in for so long. My spouse had an accident with a table saw last year but only “shot” a hole in the drywall with a 1×2, can’t even imagine what it would have done to human flesh. And yes, we should be able to do better than a third world country, shouldn’t have to perform surgery with hunting knives on ourselves.
AdAstra (16) — so good to see you. I love the name change, btw. To the stars indeed, and in spite of the rough road (per aspera).
daytime (17) — yes. Long a family favorite. You may insert a convoluted story of Detroit and Catholicism and French Canadian family here to deduce the rest.
Maxx09 (18) — very sorry to hear about your medical expenses. After a lifetime of paying into the system, it certainly seems rational that we should be able to help you. We’ll keep fighting to change this; the alternatives are far too grim to think about.
Rayne, Well I would pat myself on the back for my brilliant deduction, but how often do you see the words monk and beatification in the same sentence these days? Long time family favorite for my family too. Insert convoluted story about Indiana and Catholicism and family of English descent. I feel a certain kinship with his believers – and there is comfort to be had there, which can be in short supply other places so we should be grateful for that!