Edit #1 9:30 AM: My oncologist has decided to tell play Sloane-Kettering’s game and tell them that he has STOPPED treatment in order to get me an appointment. Of course he is NOT stopping treatment in the mean time. I hope that I will find out later today that I have a concrete date to go to S-K.
My PCP called me at 9:00 am this morning and told me that they have called the insurance company to have my case re-opened. The insurance company told the PCP that it is now “pending” re-certification.
None of these entities understand that my cancer doesn’t care about polices, rules or regulations. That’s the bottom line.
Edit #2: As of 11:30 AM I have an appointment at Memorial Sloane-Kettering on 7/24/2008 at 1:00 pm!!!
I’ve come to the realization that our health care system, no matter where you live or who you are, is completely fucked up. I used to think it was the government that was a bureaucratic nightmare but yesterday proved to me that health care might just have the government beat by a mile…or two.
Do I need to repeat that I have a rare cancer? Must we go over this again and again? I feel that I go over it over and over with the same people.
“What kind of cancer do you have?”
“It doesn’t have a name, it’s a rare cancer.”
“What kind is it?”
“No one knows.”
“What do you mean by ‘no one knows‘?
“Just what I said, no one knows what kind of cancer I have because it’s a rare cancer no one has seen before.”
The conversation just goes down hill from there because now the health care professional doesn’t have a box to fill, a radio button to click or enough room in the “other” box to write it down. That just pisses them off.
The appointment I was waiting for from Sloane-Kettering? Well, it’s not going to happen. First I received a call from my oncologist’s office informing me that S-K didn’t accept my insurance. I straighted that misinformation out. Then I received a second call from my oncologist’s office informing me that Sloane-Kettering refuses to see me now because I’ve gone through two rounds of chemo.
Well, that’s what the scheduler at Sloane-Kettering said and she is sticking to her guns…REGARDLESS of any PREVIOUS conversations that went on with a doctor, nurse or anyone. That scheduler REFUSES to make an appointment because there are RULES she is sticking to. Oh, and trying another scheduler…didn’t work either because she was onto the oncologist’s office.
Bureaucratic red tape bullshit.
So the scheduler at my oncologist’s office gave up!
I told her to talk to my doctor and make something happen because this was all in the works a few weeks ago.
Then there is the insurance company. Another cog in the wheel of the dysfunctional machine of health care. They had assigned me a case worker because I have cancer. I was diagnosed again on March 31, 2008. They closed my case on April 18, 2008. Wow, that’s the fastest cure I’ve ever heard of. WTF?
As an insured “member” I’m not allowed to open a new case. Hello? Who is the one with cancer here? My primary care physician a.k.a. the PCP has to call the insurance company and tell them I have cancer again. Then he has to request that I have a case manager.
Don’t these people read the claims? WTF?
Do I need this kind of stress? How the hell am I supposed to get the care I deserve? I mean, am I going to live long enough to get the care I need, the care I deserve? Am I going to get past the bullshit schedulers at every hospital or get denied because they have pre-set rules that they aren’t going to budge from?
I’m at the end of my rope with health care…AT THE END OF MY ROPE! I really want to live but the stress and denial of health care is going to be the thing that kills me in the end.
{ 35 comments… read them below or add one }
Yes, I agree it is completely broken and situations like this are the norm and no one seems to want to fix it in Congress, because guess what? Their insurance works great. Mother effers.
Do you think the scheduling lady ever stops to think that by following “the rules” she could be giving someone a death sentence? Idiot!
You are going to have to become the squeaky wheel, I think and I am sorry. I know you are stressed out and this is so wrong. Don’t give up.
Denices last blog post..Internet Love Song, Part I
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I know you aren’t kidding, but damn, this makes my head spin round and round and I’m not the one with cancer.
How are you at press releases? I think it’s time to start talking with the media. Because girl, you deserve better… Sometimes public expose’can really do the trick.
They should be ashamed.
Asthmagirls last blog post..How Asthmagirl Terrifies Herself
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I have to say…this is the most ridiculous thing I have ever heard of. Makes no sense at all. If people had brains. I mean seriously. Couldn’t they just do the SAVING part and worry about the rest later? Where are their BRAINS??? WHERE???
TSMs last blog post..TSM on the JESTER show tonight!
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I don’t even know what to say. The way America treats it’s people fucking ASTOUNDS me.
There has to be a way - it’s not like you live in a 3rd world country for fuck’s sake. This is so sickening and unacceptable.
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That’s some fucking bullshit! I can’t believe what kind of a depraved state our health care is in.
I hope you are able to get things sorted out sooner rather than later. But it’s fucking unbelievable that no one will cooperate with you and won’t even try to help at this point. Fucking unbelievable.
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There’s a couple of things you can do–you can try climbing the chain of command at S-K until someone is able to extract his/her head from his/her ass long enough to get you an appointment.
That’s a lot of work though, and it’d be a whole lot less work to call up a local TV station that has a news feature called something like “Fuckups on Parade” where viewers write in with stories about outrageously fucked-over treatment by construction companies, doctors, sales people, stores, et cetera, asking for help in getting these places and people to do their fucking jobs or do what’s right or whatever is needed. A TV station would LOVE to be able to name-drop such a well-known institution in connection with something so scandalous. Something like this shit with S-K coming to light could turn into a national story, and no news editor is going to turn his back on that kind of expose.
Another idea–WE could all start making that spotlight turn for you, Lisa. I personally don’t write well, but when it comes to a “this is sick and wrong and it needs to stop” I can write one hell of a rant. I know damned well that everyone who stops off here writes better than I do, so if we all do blog posts about how Sloan-Kettering is refusing to even see a woman in dire need of the best cancer specialists she can get all because a stupid-assed scheduler refuses to set an appointment, it could help start getting some fires lit under some asses.
I’m praying for you, Lisa, praying that some major ass-kicking gets you the care you not only need and deserve, but are PAYING for! Also check with whoever regulates hospitals where you live and/or where S-K is–you should be able to file a complaint AND an appeal because you’re being denied care.
If I can help Twitter me, email me, whatever–I’ve had to deal with similar things in trying to get things done with my back. My problems aren’t life and death, just the difference between having a life and someday having to have a wall removed from my house to get my ass out of the house due to years of pain making me bedbound, but I’ve learned a few things in trying to get myself treated as well.
PandoraWildes last blog post..Not so instant replay–update
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It’s complete BS that you’re going through this. Our medical and insurance systems suck here in the States, don’t they? Sadly, the only way to get the care you deserve is to become a Canadian citizen.
kapgars last blog post..Peace and love and who’s number one…
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This BS sucks. Sorry you have to deal with this. Dealing with health care issues and insurance providers is a sure way for me to end up in tears.
At least tomorrow’s the 4th of July– I hope you have plans with your girls & Dude to watch some fireworks.
Scala
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I am so very disappointed, again, in the healthcare system. You have every right to be totally pissed off, right now. I wish I habe some magic wisdom right now, to hlep you get that care that you are entitled to, as a human being. Can your oncologist, contact the oncologist at S-K and have him try to get you in, that way? Why are those schedulers given so much darn power? Are they educated in medicine? NO! And, I am sorry, but, your insurance company closed your cancer case? That is total craziness!
Christines last blog post..The last day of third grade!
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Denice, Good point about the scheduling lady. It seems I’m always the squeaky wheel.
Asthmagirl, Between the unemployment and this I could blow lids off of places.
TSM, Their brains have to be…well, you know where they are.
Karen, It’s incredible,I know.
Sarah, I hope it gets sorted out as well. Sooner than later.
PandoraWilde, I’m hoping my doctor might be able to do something but I don’t know.
Calling the media is my last resort but if I have to I will.
If I need the bloggosphere I will certainly call upon it as well!
Kapgar, I’m starting to believe I live in the wrong country.
Scala, I’ve got all three of them here starting today…it will be a very long weekend.
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Lisa, check out my new blog : )
Christines last blog post..The last day of third grade!
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ok, I blogged, and went to 2 message boards that I post on, and asked those ladies to read my blog and to blog about you, too. I am spreading the word!!!
Christines last blog post..I am going off topic, today, for Lisa at Clusterfook
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Do what you can as far as cutting through their bullshit, but also keep your eye on the fact there are two items on your agenda: one is to get well and two is to not get financially decimated in the process. Your real focus should be getting well - so can you outsource some of this financial/insurance/government bullshit stuff? Can Dude or some other close friend make some of these phone calls, fill out some of these forms? I can’t do much but I’d be happy to walk my ass up to S-K and ask to speak to a scheduler. I mean, all the can do is tell me to go away, right?
Ninas last blog post..Do what you do (just do it at 3)
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You just confirmed my feelings for our health care here in the US. Absolutely shameful. What is insurance for anyway? They don’t cover half the shit that’s wrong with us, they charge ungodly amounts of money for stuff that they “couldn’t pay” and then they are asshats on top of it.
I guess the word cancer to them is the same as any other thing, and that’s a SHAME.
Oh Lisa. Hugs to you.
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Yes medical people and their cronies the insurance co generally drip with fucked up. It usually starts with the asses in hospital administration, which happens to be the best place to throw a fuckin fit.
geeks last blog post..Dobe do Wha?
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I’m seriously wondering how long it would take you to establish residency in Canada.
Miss Britts last blog post..The New York City Recap That Will Never End*
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Christine, Thank you for the post. As I said in your comments I hope I don’t come off as a sob story because I never want anyone to feel like I’m crying “woe is me”.
I try to state the facts as they are. I’m just living with a lot of adversity right now.
I appreciate your help. You are very kind
Nina, I’m letting people do some of the things I would normally do for myself because I’m spent. I’m letting my oncologists office handle making the appointment with S-K. That’s energy I just don’t have.
I edited my post with the latest on THEIR strategy.
I never used to rely on anyone for help but I’ve changed that because physically and mentally I just can’t do the things I used to do. Pride is something I had to put away.
Krystle, The insurance has been covering my treatment but there is no one managing my case. There should be someone coordinating every thing since I have cancer and it’s a complicated situation.
I had a case manager but I’m just confused as to why they closed my case two weeks after I was re-diagnosed.
It’s true that insurance is covering less and less and putting more of the burden upon us as they charge higher premiums. The entire system is crazy and out of hand.
I don’t think that the government should necessarily run insurance however I think that there should be some regulation or investigation in how some of these insurance companies operate.
The disparity between what a provider charges and what the insurance company pays is frightening but the provider has to charge double because the insurance company always pays half of what the charge is.
THAT’S WHAT THE PROBLEM IS!
Sorry that’s my little tangent.
Geek, Like I just said in my tangent to Krystle…
The administrators have their rules and regulations. They do NOT go against them for anyone and it seems as if they are ignorant about it too. Everything is a black and white issue. No gray.
If you don’t know someone to get past the administrators you are fucked.
It might be time to pull out my “I know someone who knows someone at S-K card”.
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Miss Britt, You have NO idea how close I was to moving to Canada in November 2004…the day the election results were revealed. I begged Dude to pack up the car, rent a U-Haul and leave the country immediately…like that minute.
I wish he would have taken me more seriously.
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I don’t know jack about how all of your cancer-related ‘hoops’ work, but I am curious…is there any way that a local cancer agency can get you in contact with an advocate type of lawyer? Someone that would give you the correct jargon to throw a “legal grenade” under their uncooperative asses? Anyone doing pro bono work? (This may just be a stupid idea,like I said, I don’t know how all of this works.)
I’m just so sorry that you are forced to endure this. You’re in my thoughts.
metalmoms last blog post..Rocket-Not Rock it
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No problem! ((hugs)) I am hoping that you continue to be able to post good updates for all of us!!
I may not have a well read blog, but, I do have bloggy friends and message board friends, who do!
Anything I can do to help!
Christines last blog post..I am going off topic, today, for Lisa at Clusterfook
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Wow, that is five kinds of fucked up. Um, let me add that whole issue to the prayer list!
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Lisa -
When someone asks you what kind of cancer you have why don’t you give it a name? I mean, it is yours for godsake. Apparently no one else has ever seen it. So give it a name.
Clusterfook’s Syndrome??
Pajamachick
PajamaChicks last blog post..Friends…
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I think taking it to the media is a good idea…
or if you knew someone famous.. that would help..
they could fight the cause with/for you.
Sorry I’m not famous.
I hate that I feel helpless to do anything for you.
I will say prayers.
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I have a rare blood disease and have to take crazy meds and have transfusion treatments all the time - I understand your frustration with the health care system..it SUCKS! My favorites are the insane co-pays AFTER paying insane premiums.
Although I am against a national health system - it’s fine for people who have nothing wrong with them but add one teensy rare thing and you get put to the bottom of the list.
I’m so happy you got your S-K appointment and I’m sending positive thoughts your direction.
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There are so many people saying universal healthcare would be worse because the government would fuck it up. I really don’t think they could make it any worse! The insurance companies and the office people who have to deal with them are one major clusterfuck preventing people from getting the treatment they need, while they piddle over papers and approvals and quotas and profitablilty and etc. If it was “all under one roof” I think that would clear up confusion and signal-crossing. And also the huge profits insurance companies make, it’s not “health CARE” it’s a fucking FOR PROFIT BUSINESS, and to me that’s a conflict of interest. We’re talking about people’s lives.
annies last blog post..Hooray for Hollywood
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Right on, PajamaChick! I heartily second the “Clusterfook Syndrome” idea. The lack of name for what you have is really bugging me and could amount to an even bigger problem than it looks like. Definitiveness - so important in diagnosing and treating stuff, it just can’t be overstated. Without it, you’re flying with a gaping blind spot.
What unholy fucking mess, this red tape. I’m glad you’ve got some help and people in your corner.
Catherines last blog post..H2M is evolving a bit…
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That’s crazy! I’d imagine that someone would at least try. I’ve worked in healthcare, and honestly, there are way too many people working in it that just don’t care. it’s seriously crazy. There are those people who were meant to be in nursing care or healthcare, but honestly there are those who just don’t give a shit and that really pisses me off.
Don’t get me started on insurance. Oy!
I’m so glad you got something set up!
yoshis last blog post..Wordless Wednesday
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OMG it SO sucks the big one that you have to continually fight for what should be a given - I am so sorry…but happy to read the update that you got an appointment at SK!!
We’re all here - just say the word if you want us to get the word out there in any way!
Tugs last blog post..Summer Meme
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YEAH!!!!!!!!!!!!!!! Update # 2 made me very happy for you!!!!!!!! Only 3 weeks away!!!!!
Christines last blog post..I am going off topic, today, for Lisa at Clusterfook
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MetalMom, This is one of the reasons I’ve thought of becoming a patient advocate because I’m not sure these kinds of people exist.
The American Cancer Society exists but they just point you to different agencies and most of the time they can’t help unless you are below the poverty line.
Christine, Thanks!
EDW, At least I got some of it straightened out.
PajamaChick, That’s a great answer!
Kate, Damn, here I thought you were famous.
I’m trying to save the media card for when I absolutely need it.
Thanks for the prayers.
Pam, Yes, having something rare certainly puts you into a completely different and odd category. I’m finding it frustrating.
annie, Bingo my friend! You absolutely have it 100% correct! If it doesn’t change SOON NO ONE is going to have health care except the wealthy.
What the hell, soon no one is going to have anything but the wealthy.
Catherine, I don’t expect that they are going to name this anytime soon but PC’s name suggestion is a good one.
Yoshi, That’s another problem. Those that prevent us from getting access to health care don’t even care that they are doing it. They could care less if someone dies as a result of their apathy.
Tug, I’m tired of fighting too. Thank goodness something went my way though.
Christine, Still, it’s too long but I’m glad there is an appointment.
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Is there someone else who can fight this bureaucratic fight for you so that you can focus your fighting energy on your disease? This whole thing seems absolutely asinine.
Shellis last blog post..While Laptopless…
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Shelli, I’ve wondered the same thing myself. I don’t know the answer to that. Dude can’t do it because he works full time and he knows that I know the system better. And that’s the thing…I know the system. I think I’m a better advocate than anybody I know. In fact I could probably make a career at it.
I should have been a social worker or something.
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Lisa -
I don’t have a “real” job right now - and I don’t have Clusterfook’s Syndrome. I’ll fight for you. Just email me the numbers and info and I am your girl.
Yes I am being serious.
Pajamachick
PajamaChicks last blog post..Friends…
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Have you tried self-referring yourself to M.D. Anderson Cancer Center?
http://www.mdanderson.org/patients_public/new_patients/display.cfm?id=D602CED8-7483-11D4-AEBD00508BDCCE3A&method=displayFull
Katies last blog post..Happy Fourth of July!
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Just read your About page. Um, hopefully MDA isn’t the world renowned cancer hospital from 2007. If so, just ignore my comment. That’s what I get for de-lurking.
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