Wednesday, March 17, 2010

3/17/2010

happy st. patty's day to ya!

today i 'watched' a nepeherectomy being done at swedish hospital by a robot. yes you read that right, there's a surgical robot out there.

there were 3 observers to the surgery who tweeted (twittled?) as things went along, including taking and posting of pics. the procedure was a side-entry, less invasive procedure by dr. james porter who perfected this way of doing it, and the patient will only stay 2-3 days in hospital as opposed as a week+. i must say it was quite impressive.

here's a link to the transcript.
http://www.mynorthwest.com/?nid=646&sid=299316
and
http://www.slideshare.net/TizoMA1/twitter-feed-of-live-kidney-surgery-at-swedish

here's a story about it
http://digitaljournal.com/article/289237

Digital Journal

Live Tweeting Kidney Operation

1 hour ago by  Renee Hendricks (who's my way cool neighbor)

Just when you thought live tweeting couldn't get more interesting, Swedish Hospital in Seattle, WA brings it to a whole new level.
Seattle, United States - The diagnosis of kidney cancer is passed on to over 50,000 Americans each year. Swedish Hospital in Seattle, WA has been part of one of the latest advancements in the progress toward treating this disease. The hospital's Robotic-Assisted Surgery program, directed by urologic surgeon James Porter M.D., is home to the da Vinci - a state-of-the-art bit of technology that helps doctors perform a more precise operation than with standard surgery. The da Vinci allows the surgeon to perform a rear-approach partial nephrectomy - this makes the precise removal of the disease portion of the kidney possible. The advantage to this type of surgery is the ability for patients to recover at a quicker rate and to retain a majority of their kidney functionality.

The month of March is National Kidney Month and to honor this month's theme, Swedish Hospital gathered a group of "tweeters" from the hospital and had them observe Dr. Porter performing this critical operation using the da Vinci technology. The "tweeters" live tweeted the entire operation from beginning to end. The premise behind the event was to be able to give more people an inside look at the advances that have been made in modern surgery. The surgery occurred on Wednesday, March 17, 2010 at 7:40 am and was a complete success.

The patient who received this surgery is a 69 year old male originally from California. His renal mass was found as part of a follow up for an abdominal aortic aneurysm. The referral to Dr. Porter and Swedish hospital was made by a urologic surgeon who had previously trained under Dr. Porter. The live tweeting event was conducted under the full consent of the patient.

To review the entire procedure on the Twitter news feed, the following Twitter accounts were listed as part of the event:



- - -
and here's something else in today's news, a little closer to home.

http://www.express.co.uk/posts/view/163367/Ice-cold-gas-kills-breast-cancer

ICE-COLD GAS 'KILLS' BREAST CANCER

By Victoria Fletcher

UK NEWS

BREAST cancers can be killed off by being frozen with streams of super-cold gas, scientists have discovered.
And, in a major breakthrough, the “ice-ball” created around a tumour by the injections not only kills it off but ensures the cancer does not return.

Fine needles are used to inject the freezing gas around the tumour in a technique known as cryotherapy, which means the patient does not need invasive surgery and suffers no major discomfort.

The trial was carried out on 13 patients who had all refused to have breast operations to remove their tumours. They remained cancer-free up to five years later when doctors saw no sign of the disease returning and noted no significant complications.

Dr Peter Littrup, interventional radiologist at the Barbara Ann Karmanos Cancer Institute in Detroit, who led the study, said the findings suggested freezing tumours was both safe and effective.

“Minimally invasive cryotherapy opens the door for a potential new treatment for breast cancer and needs to be further tested,” he said. “When used for local control and – or – potential cure of breast cancer, it provided safe and effective breast conservation.” Although cryotherapy has been used by surgeons for years to treat disease, it always used to require a major operation.

But the invention of tiny needles has allowed radiologists to start using the process. Studies have already shown that it can help kill off prostate tumours, although it is still not recommended for widespread NHS use.

In the latest experiment, cancer cells are destroyed within minutes of the injections and the patient suffers little pain or scarring. The study was presented at the Society of Interventional Radiology’s 35th Annual Scientific Meeting in Florida yesterday. 

The team followed the 13 patients for five years – the length of time in which patients should not suffer a relapse in order for a treatment to be classed as effective. More than 45,000 women are diagnosed with breast cancer every year in the UK. Most are given surgery to remove either the tumour or the entire breast. 

This is followed by weeks of radiotherapy, chemotherapy and various drug treatments depending on the type of breast cancer. More than 80 per cent of women diagnosed with breast cancer will survive for at least five years using these treatments and more than 70 per cent will survive for a decade.

In recent years, radiologists have been looking at a number of new ways in which they can “intervene” in diseases using a range of procedures. 

These doctors, known as interventional radiologists, have tested techniques including “heating” tumours with lasers and radiation. Last night, breast cancer charities welcomed the new study, but said it was far too early to say if the technique would ever be available to all patients. 

Dr Caitlin Palframan, from Breakthrough Breast Cancer, said: “We are a long way away from knowing whether cryotherapy has potential as a treatment option. Where appropriate, surgery remains a gold-standard treatment and surgical techniques continue to improve all the time.”

But surgery can have a profound psychological impact on patients, and some refuse it despite the consequent risks. Cryotherapy has been used for years to treat various skin conditions such as warts, moles and skin cancers. It has also been shown to work on other cancers, including cancer of the lung, liver and cervix.

Although it is only minimally invasive there are side-effects and these can include damage to surrounding healthy tissue.

Friday, March 5, 2010

3/2/2010 - 3/4/2010

(tues) it's been 48 hours since i got that fateful letter. i took an ambien to help sleep. i was afraid i'd be up all noight alterntely crying/worrying/brain going 100 mph trying to figure out what i'll do in different scenarios. while not outright sobbing, i did cry for almost the rest of the night until i fell asleep.

yesterday (mon) i spent almost all day on the phone. i called my OB's office, Welk's, Clarfeld's and Crossland's, and emailed my GP. i let them know i got a letter from regence denying coverage of my MRI and i'll need a letter from them to appeal their decision.

Jenny at my OB's office called back almost immediately and wanted to know what the letter said. we talked for a bit, she said there'd be no problem having Dr. Otto sign something. if i would please email her the pdf i made of the letter she'd write up something and have Dr. Otto sign it, and get in touch with me tomorrow morning at 9.30, when she was expected back in the office.

this morning, (tues) i got an email just after 9.30 from her. she included a copy of the unsigned letter, which looks good to me. i asked her about the sentence referring to the MRI in Jan 2010 - and did we have to potentially do this every year or is there a way we can encompass all those to come. sadly, but of course it'd be too easy to do otherwise, we have to fight each year every year. ok, at least i know to expect this again, and i can also remind the other doctors of this.

(mon) kathy at Welk's office was appalled, too. she was more than helpful in either typing up welk's transcription or writing something for him to sign. she was all over being helpful, but welk felt he was too far removed from this and probably shouldn't be involved. unless it was like a 5yr interval when he definitely suggests MRIs to check on the - oh what's the word... - to see how the implants are doing. integrity of the implants maybe what i'm looking for? so i get it and of course i'm not going to push him or my GP. yes they are involved, but not like my oncologist or surgeon or OB. those are the holy triad as it were. and one can include dr Watts, the radiologist who diagnosed me. wherever she is.

then i get a call from jaime, Dr Crossland's nurse/assistant. she said she called the breast clinic people and they told her they had been paid. so that brings up a whole new slew of questions. so she's telling me they got paid, there's no reason to appeal and the letter's got to be a mistake. well, ok. i'll go with that. except for the fact that i have a letter in my hands telling me something else, and if i don't agree with it that i need to do the following...  and that requires letters from doctors. at one point she accused me of yelling at her, and if i hadn't been crying so hard maybe i would've been. but i can honestly say that for that phone call i was so upset and bawling that i didn't have the lung capacity to yell at anyone!

by this time it's almost 3. boy the day went fast! i called matt i was so upset, and luckily he was going to be home soon. i was crying so hard because i was so frustrated with jaime (i admit i'm not sure how she spells her name) he could hardly understand me. i managed to get through the rest of the day with a few teary eyes but no actual tears.

(tues) i actually got a little more work done on tuesday not related to this issue, but i did spend time on the phones, on email, taking notes of ideas etc that might be useful if it comes to higher appeals or actual legal stuff. that, sleeping in late, and having to be at the gym by 2.30, then a quick shower and dinner then it was off to my support group kept my mind occupied.

the big thing about tues is i was on the phone with customer service at regence. here's the skinny: (yes it's been copied. why keep typing it out when it's already been done?)

---
i talked to laura in lewiston ID @ ext.4803
- it doesn't matter if scrip written or services received was actually called 'diagnostic' or were, for my part actually diagnostic.  they [the insurance suits] 'looked at studies' that show the test/procedure/whatever doesn't significantly benefit the person so it's considered 'investigational'.
[forget it's the only test out there right now with the best chance of diagnosing me at early stage BC in my left breast. it's only my life we're talking about!]

- in 2009 regence's "investigational services" list was changed to be in accordance with blue cross/shield. in 2009 and earlier regence was required to write off investigational, but now they aren't, so they are requiring the patient to pay for it.
[forget that my appt was made in 2009 and my MRI was actually done before they finished their decision. and this affects anyone who has insurance under the BC/BS umbrella]

- if they pay the 'whoever' - in this case overlake breast care-  and then decide it's investigational, they can indeed request a "payback"  and apparently hospitals et al are more than willing to fork the $$ back over.
[which is what they plan on doing and then re-bill me with the entire amt]

-was told in jan 2009 the provider [overlake breast imaging] had to take a write-off for my MRI

-even if the letter is a mistake it is off to appeals to make regence see it's a mistake. she did give me the web address for the form if i want it now as well as putting it in the mail today for me: regence.com - search forms for 'appeal'
---

(tues) i took all my notes and my laptop to group. we were about 1/2 through the meeting and i hadn't said much. but TBH there wasn't much to add yet, the main concern with 1 gal was not knowing what chemo she was going to have to go through and the fact that she didn't want to have a port. sadly none of us had been in the situation of having a port so everything we could tell her was stuff we learned from others who weren't at tuesday's meeting. i digress. about 1/2 way through suzi kinda bumps me and says 'you've been awfully quiet'. "yeah, i've been avoiding." i launched into the letter and everything.

i must say it felt good, the compassion and concern the others passed along. everyone was shocked. a few of them are under the blue cross/shield so they were happy to hear so they could be prepared. i shared with them what the gal from regence said, what a few of my friends in medical billing had commented, what a friend said who actually works for 1 of those medical insurance companies said, along with the plans for mailing personal and medical letters to (insert long list of names/offices here). along with having already contacted the docs to get letters from them. i also shared my frustration with jaime and they were appalled at that behaviour. i must say in her defense until this i've never had an issue with her, in fact she's been extremely helpful in all other incidents or whatnot.

and we joked about how, when they started to offer suggestions, i quickly grabbed my laptop, propped up 1 foot on the opposite knee to form a little table for the laptop. i quickly started typing away. they had some great ideas i hadn't thought of, and offered 'refinements' to a few i had. the rest of the meeting was pretty much focused on this topic/event in general and me specifically.

at the end of this post i will copy over my notes. i have also received a few thoughts about what to include along the voice of the insurance company. i will include those as well. so please keep reading until we get there! :-)

(wed) before i had a sip of my coffee in the morning, in fact if i could've done it without opening my eyes in bed i would've, i called overlake breast imaging billing dept. suzi suggested i call them, let them know i paid my share, that i know they were paid by regence, and i know regence is going to ask for the money back and make me pay. and that i plan on contesting that. the purpose for this is they will flag my file. they will know ahead of time if they return the money to regence then they may very well not see a dime of the difference. i thought this was an Exssssssseleeeeent idea. :-)

my 1st call went to denise's vmail so i left a message. about 15 mins later i decided to try again. i really wanted to reach them before they could have a chance to return any money that they had received. and the 2nd call got through to Beth.

she pulled up my file and found the bill. she took note that i had paid what regence said was my portion and confirmed they hadn't gotten it yet (no surprise). and we decided while talking that she was going to watch for it and return it because "while regence did pay us, they paid us the wrong amount, so until we've taken care of that i'd rather you keep your money". she understood my hesitancy, and that i was going to contest anything over the current amount in the mail. but she assured me it'd be ok, she was going to talk to erin and have her work on this 'today' and they'd get back to me and let me know what was happening.

about an hour later erin calls. she had picked up denise's vmail messages and was returning my initial call. we laughed, i let her know i reached beth and the 2 of them were to talk as she was the one beth said would be figuring out what was up. but if she has any question after that to please call and i'd add what i could.

she called back later in the afternoon with answers. i will *not* have to pay is the result. but let me share with you some of the information i learned.

the letter i received from regence refers specifically to the CAD or "computer aided detection with MRI". now you can not have an MRI without the CAD. just like you don't have a ladder without rungs. what the letter from regence states is that "yes, you can have the ladder and we'll pay for everything but the rungs". doesn't do one much good, does it? you have to have them both or forget about it. as i know just enough about this technology to know that you have to have both, of course i'm thinking denial of entire MRI payment. when you look at the bill the CAD is the same code as the rest, so there's no 'line item break out' for it, either.

essentially what happens is that overlake currently breaks out the CAD and bills seperately for that, even though it's all the same code, etc. what laura at regence told me is truth, as she's looking at the letter and explaining it to me. the fact that she doesn't know it's all part of the same thing is something she may very well not know. so regence paid overlake low on this, and they are going to 'discuss' with them the differential and after all of that's taken care of i'll see an adjusted bill from them [overlake] with a new 'my amount' due. as it turns out it'll be about 25$ less than what it is now.

i had a great chat with erin. her aunt was diagnosed with BC so it's close to her. she also understands to a certain degree how stressful going through these billing issues are for those of us currently under treatment as well as those of us who, while we are 'done' with treatment, we're never really done with 'it'. it's always there. there are still many days when i think back and wonder what-ifs, and elate at how good my fortune with this whole thing is.

she said she really had no idea why regence was sending out these letters. i wasn't the 1st to get one. and no, they didn't see this issue last year. what they can tell is regence has changed a few things and while before they and overlake billing codes etc might have been in sync, now they are not. thus the 'denial of payment' letters. she said overlake may very well have to revise how they bill for these, too. that there is no reason why i should need to pre-approve these MRIs.

she did suggest, JIC, that next year, when the doc sends the scrip over to scheduling, that we call regence and make sure nothing serious has changed. that way when we get the letter we'll know up front it's a mistake, that overlake and regence hasn't worked out their vocabulary, as it were, and i'll call overlake breast imaging billing 1st thing :-).

both erin and beth thought it was a great idea for me to call them and let them know i had planned on contesting the plan of regence which made me feel good, thank you suzi!

it was a huge sigh of relief and i can't tell you how much weight off my shoulders to know this was taken care of. but as erin and i spoke, (along with the few conversations/emails from my insurance friend)  it also became clear that those suits in DC who are fighting over the healthcare reform bill really don't get it. it's not so much healthCARE reform we need, as much as it is health INSURANCE reform.

having gotten started on gathering info JIC i needed to take this all the way through the courts system, i will post it here. there is much we, as americans can do to tell them, and in cases like mine actually show them, what the insurance companies are doing is ridiculous, to put a word to it.

coincidentally, obama was giving a speech about the healthcare reform bill as i was on the phone. i caught just the end of it, but this sentence stood out to me
"This is about what reform would mean for the mother with breast cancer whose insurance company will finally have to pay for her chemotherapy.

And this is about what reform would mean for all those men and women I’ve met over the last few years who’ve been brave enough to share their stories. When we started our push for reform last year, I talked about a young mother in Wisconsin named Laura Klitzka [KLITZ kah]. She has two young children. She thought she had beaten her breast cancer but then later discovered it spread to her bones. She and her husband were working – and had insurance – but their medical bills still landed them in debt. And now she spends time worrying about that debt when all she wants to do is spend time with her children and focus on getting well."
so i found the link and will provide some of the text. all of it can be found here:
http://www.kaiserhealthnews.org/Stories/2010/March/03/Obama-Full-Speech-Insurance-Reform.aspx

here's my grass-roots efforts to do my share of what ever it is i can do, to alert those in places who do have some control over things, aware of what the public actually goes through. - hey, has anyone been watching that new reality show 'undercover boss'? it's the same thing. those in mgmt - in our case suits at insurance companies, congress, etc - have lost touch with reality - people like you and me. something might look great on paper but doesn't work in reality and they haven't a clue to this. they do not realize what's really happening or how certain procedures/laws are actually being carried out or handled.

what can we, the public do? write letters. write everyone you know! those of you in different states will have to know the names/address of your local and DC people. but you'll find out who you need to contact if you use my list as a guideline. and you may have other people you know who can also help.

writing letters might seem 'your parents' generation' but in the words of Mr Schoop (remember him in 1987's summer school?) "a well-written letter can get you riches". ok, not verbatim, it's been years since i've seen that film. but i nailed the gist. the congress, the senate, as far advanced technologically as this country is, political rings still move in the slow circle. don't believe me? obama is the 1st pres. to have kept his blackberry, and use email on a regular basis.

i haven't written my letter yet, but once i do i will post it up here. i hope to have it written within the weekend. you can use it as the main text of yours with the preface "a friend of mine who was..." kind of thing if you like. if you write your own i'd love to read it, but i realize it can be a personal thing and will not hold anything against you if you choose to not share it. you can also copy some of the ideas below if you want.



those people in/and for the state of WA i will mail/email.
1- commissioner of insurance
2- attorney general
3- connie lehman, director of breast imaging at seattle cancer care alliance. she has published articles and given speeches worldwide on the subject. read more about her at
http://www.seattlecca.org/physician-detail.cfm?PhysicianID=196&Story=1
 4- both WA state senators: patty murray & maria cantwell
5- WA state governor: gregoire who is a BC survivor
6- WA state congressmen: jay inslee, rick larsen, brian baird, doc hastings, cathy mcMorris rogers, norm dicks, jim mcDermott, dave reichert, adam smith
(find yours at http://www.contactingthecongress.org/)
 7- pres. obama
 8- head of regence insurance
 9- head of blue cross/shield
 10- do we know specific lobbyists?


11- Seattle Cancer Care Alliance

contact the advocacy person/dept at the following:
1- komen - local and HQ
2- BCRFcure.org: (breast cancer research foundation) my personal charity



3- NBCF (nationalbreastcancer.org)
4- ACS (american cancer society)
5- any other charity of your liking that relates

in writing letters consider the following (from an unknown source i stumbled upon)

1.
Something we should be able to push for, effectively, at the state level is legislation that requires insurers to notify affected* patients of medical policy changes so many days (probably 60 or 90) before it is effective.  
*affected = anyone who has had that procedure already, or been diagnosed with a condition that could lead to that procedure, within the past 24 months.  
 
in my case this wouldn't help for future MRIs, but at least i won't get blindsided by a retro adjustment.  (sadly, insurance cos are limited by the data from docs and hospitals, so some people will be missed, but at least the intent is there and resolution ought to be much faster and less stressful).  can you believe this legislation isn't already nationwide, if at all, in place?
 
2.
in the letter to the CEO of your insurance company  perhaps include a lead-in like "instead of going straight to my governor, senator, etc, I am writing to you". even if it's not the 1st letter you write, this is a good idea. some CEOs are under the influence that you can't tell the people what is changing, you have to sell the people on what's changing. 
of course we the people don't trust ins. companies, and it will take a lot to turn that opinion around. suggest strongly that they start to work with the public and allow us to inform them of how it could impact our lives - for better or worse. of course nothing (not even obama's reform bill) will please everyone all the time, but maybe this is the 1st step in bridging that gap? just a thought, do with it what you will.
 
3. many insurance companies have a corporate goal of eliminating any despotism of health care waste, which is intended to eliminate unnecessary medical care from the system, thereby reducing claim dollars and keeping premium lower. still with me? let's say, for example of argument, the diagnostic breast-dedicated MRI actually is unnecessary, the ins. co. also has a goal to keep me as a member for as long as they can. i.e. keep me alive as long as possible so i can continue to pay them monthly dues. :-)  when they change policy at any level which causes billing issues with providers (in my case overlake breast imaging) or members (people like you and me) they threaten that relationship. 

maybe in a utopian world the following scenario would be implemented and actually work:
the insurance co would first make the decision for the change, 2nd identify current members who may be affected, and 3rd create/provide an outreach program prior to the actual policy change, informing us of the change, why it's being made- quoting the studies, rather than just referring to the suits, and 4th, giving us an opportunity to comment and cite studies as well. in my case specifically the studies cited in the letter are older and not very large, where there are any number of newer and larger studies done that do support getting the breast MRI yearly as a course of treatment.
 
maybe the ins. co. would listen and change the police to benefit the patient, maybe not, but at least we've had a chance to refute/rebut. depending on how patients were allowed/provided a way to respond could allow the ins. co. a chance to see how many people would be affected - as opposed to the odd letter that someone takes the time to write - which is why i do urge everyone who reads this to write the letters and send them. it's all easy and good to intend to do this, but we do need to unite and become 1 voice of many. no solos here, just a full orchestra! (sorry, just saw an opportunity to include my livelihood haha).
 
4.
ins. co. are trying to keep costs down by denying un-needed test/procedures etc. but our member costs - what we pay monthly or by paycheck or however keep going up. i know mine has gone up 50-100$/month every year for the past 4 years. so if the ins. co. is cutting coverage, why aren't my payments going down? there's the rub. the public needs to be shown, not just told, where and how we are saving money. i admit i don't quite get how this will work, but that's what was said. my personal opinion: to cut some costs, if there's no prescription for said test/medicine/procedure/device, then don't cover it. the "affected person" must have visited the correct doctor for correct item. but if there is a legitimate prescription written, the said item must be covered by the insurance company, no questions asked. some may argue that we the people would then just start asking for everything left and right etc, but i ask you this. yes, there will always be that exception to the rule, but seriously, how many people do you know will ask for a surgery, knowing the risks etc, just for the fun of it? if there's really a question or doubt about the item, then by all means follow up on it as a fraudulent claim and deny that person the coverage. it's a case by case basis. most doctors are smart people (yes there are the exceptions, and there will be the odd doc that just gives a patient anything they want) and will talk to and listen to their patient, determine the least costly/invasive form of care 1st and work up, so there will be a trail for fraud control cases to follow and learn they are legit. did that make sense?
 
and finally 5.
maybe medical imaging procedures have hit a high. what a lot of people don't realize is that due to imaging technology, these tests can show the doctors more than we ever thought possible even 5 years ago.
because the tech. has gotten so good so fast, many doctors are eager to do the imaging to learn what's wrong with their patient at the start instead of going through a series of lesser quality testing. maybe that's what ins. co. are seeing. i've learned that an MRI has less exposure to radiation than an X-ray. a CT scan has a whole lot more than an X-ray. but there are some things you can learn from a MRI you can't get from a CT. use of contrast can be used with an MRI but not with a PET and maybe the CT, too (if i understand it correctly). maybe it's certain contrasts. i know i could not get a PET or CT with the gadolinium contrast - what they use for the breast MRI.
something i don't understand, too, is this. maybe 1 breast MRI machine et al costs (this is totally example guys) 100,000$ there's only 1 or 2 in each city - hospitals also have to have the facility space and hire techs etc. but everyone in that city and a certain raidus will be using that machine. it'll get paid for in a few years if they charge 1000$/visit to the patient. yes, updates and replacements happen, but not so frequently that our ins. has to go up or insurance cos. ought to feel the need to start denying the coverage. 
also in my case compared to many of my friends. i have a family history of BC, i was diagnosed early with BC, so it makes sense for me to have the MRI where many of my friends have no history. this doesn't mean that at some point they themselves may be diagnosed (i hope not) but it does mean that their doc is not going to be sending them off to experience it. if they did then my above thoughts about the fraud-control dept would catch it and flag it.

insurance companies plan their policies as a global rule for everyone, and everyone is not the same. we need to stand up to them and remind them, time and time again if needed, that we are indeed all different, and we shouldn't be treated as a number, but as a person.
- - -
 
i know this post has been very long and wordy. maybe it took you a week to get through it, or you trudged through every word in 1 sitting. either way i'm pleading with you, please write that letter and send it off to your people who fit the positions of my people.

addendum 3/4/10 @ 5pm
and to let you know, i have just read the text of obama's speech about the reform bill. (link was added above.)

if you agree with everything i've said, then write those letters. write them now and send them now. read obama's speech. it ought to sound eerily familiar. i had no idea what he actually said until just now.