Cary Tennis After Hours

Musings, outtakes and daydreams

Cary Tennis

Cary Tennis
Location
San Francisco, California, USA
Birthday
September 11
Title
Since You Asked advice columnist
Company
Salon.com
Bio
Cary Tennis writes the Since You Asked advice column for Salon.com. He also leads writing workshops and runs a small publishing company. He lives in the Outer Sunset/Ocean Beach neighborhood of San Francisco with his wife Norma, who is a painter and book designer, and their two standard poodles, Lola and Ricky.

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MARCH 19, 2010 12:36PM

I'm filing a grievance with Blue Shield -- and you can, too!

Rate: 52 Flag

It's been a while since I posted on Open Salon.

I've been recovering from cancer surgery and waiting for the insurance company to approve the next course of treatment, which is 8 weeks of proton beam radiation therapy at Loma Linda Hospital in Southern California.

This treatment is what my surgeon, Dr. Christopher Ames of UCSF, calls the standard of care for sacral chordoma.

Today I learned that the insurance company has denied the request for this treatment. 

Dr. Ames is a noted expert on spinal tumors. That's Ames in the ABC7  News video below -- taking four vertebrae out of a woman's neck and ... well, just watch the video. This is the guy who operated on me.

Dr. Ames says that 8 weeks of proton beam radiation therapy at Loma Linda Hospital is the standard of care and I believe him. So I called Blue Shield. They told me to fill out this grievance form.

I put the grievance form pdf on my Web site where you can download one, too. Maybe if a few hundred, or a few thousand of these forms were filled out and mailed to Member Services Grievances, Blue Shield of California, P.O. Box 272540, Chico, CA 95927-2540, well ... maybe it would get some attention. Or maybe if you called  (800) 424-6521, which is the number that people with grievances are supposed to call, maybe that would get some attention. On the back of the form are instructions about how to contact the California Department of Managed Health Care.  Their phone number is 888-HMO-2219.

Sacral chordoma is a very rare cancer, and proton beam radiation therapy is not a well-known course of treatment. Plus it is expensive. So naturally an insurance company is going to carefully review a request for such treatment.

But Blue Shield wouldn't deny me needed care, would they?

I don't want special treatment. I want the same treatment anyone else would get. I just want treatment. 

I thought of all the people who have written to me over the last few months wishing me well, and I thought maybe if I went public with this situation it might help. Up until now, I have not wanted to use my position in the media for personal benefit. But now that the insurance company is denying me life-saving care, I am going to do everything I can to ensure my survival. To that end, I have also hired a professional medical advocate who is working behind the scenes.

 I really believe the insurance company will do the right thing. But they apparently need some persuasion.

 

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Thanks for this! Great information for concerned American citizens!
Granted your situation is more grave than my own. I too have been having problems with the blues, they decided to take away my CPAP machine since I din;'t use it enough to suit them, the problem? Well the only sleep clinic available to me has a months long backlog of people to see for adjustments to those machines. I f they aren't just so they will not stay on while you wear them and then they have done no good at all. Had I just left it running every night I would still have it and my appointment to have it adjusted would have been made and completed. Since I turned it off after struggling with it for hours a night they decided that despite the fact that untreated apnea can lead to a good chance of dying suddenly in your sleep I did not need this device because I "didn't use it".
Cary it's probably company policy to deny all requests for treatment. Demand an explanation in writing and request a review by a medical director who is board certified in Oncology.

Remember to constantly challenge and appeal. Do you know if your plan is covered under ERISA? You have certain rights under an ERISA plan. Please check you summary plan description to determine if this is an ERISA plan.
Oh, Cary, this is ridiculous (Blue Shield, that is - not you). I'm sure going public with this is going to help your cause. And I'm sure the stress of it all isn't exactly helping the healing process. I'm sorry.
I am very sad to hear that you are having to go through this nightmare with insurance when you are trying to get well. And you are not using the media for your own personal gain, but as a call to action for the public for you as well as ourselves. xox
This is awful Cary. I'm Canadian, so I don't think my grievance would really help you. But I'm still going to hope for the best for you.
My impression is that, with a little pressure, you may find BS a little more accommodating than usual, considering the negative press medical insurance companies have been getting during the healthcare debate. Sending you my sincerest wishes for resolution and recovery.
While i am not yank i do folow the whole circus regarding amercan deathcare.
I find it higly entertaining and makes me feel happy i live in a civilized country.
What you treehuggers and "tutchy feeling" "liberals" miss is the drive and dicepline the tea party fanatics have.

So just a free piece of advice; GET GET YOUR ASS IN DC AND DEMONSTRATE
While i am not Yank i do folow the whole Greedcare circus and find it higly entertaining.
It also makes me happy i live in a civilized country.

Wat those tea party people lack in truth, sence, and anything jesus stood for they compensate with shouting and discipline.


So I like to give those "treehugers" "social" "liberals" some advice;
GET YOUR ASS INTO DC AND DEMONSTRATE!!

Salon should have enough readers ect to organise protests and show the elite (politicians) what they want.

If not you guys get what you deserve and yes in that case then DROP DEATH.
Yes! Thank you for speaking out for so many Cary! I have followed your blog as I, too, was denied payment for care which was 'preapproved' in advance by BCBS. By the time I was even coherent enough to fight with them, they changed their appeal policy from 1 year to 6 months. This started my family's downward financial spiral by leaving us with a 34K bill. It was insane. Furthermore, I have been determined 'disabled' by the government, a process which is very hard to get through, and BCBS just denied me out of a claims management policy. My care was well within my benefits.

And, people want to turn their health care over to the private industry. Third way politics is going to be the death of the rights of citizens in this country. Excellent, much-needed, timely post. Please keep writing for all of us.
First, many wishes & prayers for a speedy treatment & full recovery. Second, I hope you don't mind (I'm assuming not since this is a public forum), I am going to put a link to this article on Twitter. Be well!
My husband's "experimental" surgery was quickly deemed necessary and appropriate by Blue Cross when our local elected officials got involved. We had an approval same-day and multiple apologies for a "miscommunication" on the issue. We contacted our two local elected officials (State Senator and Representative) and both immediately followed up on our behalf. Are you lucky enough to have progressive representation in your area?
Cary,

I’m very sorry to hear about your significant problem with BCBS. I’m not sure whether you’re covered as an individual or within a group, but if it is the latter, I highly recommend that you get in touch with the head of the HR Department. I also wrote something useful about how I fought a denied claim by BCBS:

Sticking it to the Man at the private medical insurance co.

I wish you the best of luck!
Sorry you are going through much stress...the last thing you need at this point in your life. The insurance companies are vultures and all you can do is fight fighht fight!
Good luck!
Three words. Health Care Reform. Rated.
Don't laugh at me, but you could try contacting Dr. Oz about your situation. I'm not being facetious. When our group contacted him about the XMRV retrovirus found in CFS patients, he responded and got us national attention in a matter of weeks. There was a ripple effect after that too. A lot of people know about it now that wouldn't have otherwise.

Probably the best thing is a lawyer. That's how our country works, isn't it? I do hope you get approval, and soon. This is not something you should have to worry about in addition to everything else.
I'm so there. I'm going to print a series of letters that will be mailed over time...to an ever increasingly annoying level.
Best of luck to you, and hopefully, the death panel decides to get logical, get moral, and stop destroying American lives.
Even if you're lucky enough to have health insurance you'll still get screwed!

I'm guessing with a little extra agitation from your friends and fans they'll suddenly claim a "miscomunnication error."

Hope you get the treatment soon Cary, I can't imagine that having to delay treatment is a good thing.
PS Considering the bad press the insurance companies have been getting, you might try contacting your Congressman.
This is a horrible situation. Just having to apply to your insurance company to "approve" a procedure ahead of time seems ridiculous to me.

It's a good thing the US doesn't have socialized medicine, though, or there might be someone coming between you and your doctor, telling you what kind of procedures you can have! (Sorry - hope you don't mind sarcasm.)
Your surgeon seems like an amazing man - does he have a voice in this process? I will happily send in a letter on your behalf and say a quiet prayer of thanks for the Dr. Ames of the world.
Cary, at least when the insurance company who is privately owned tells you that they won't cover it you still have enough life in you to find an alternative...
With the government....you'll die while standing in line.
There's nothing that infuriates me more than this kind of thing. Medical advocate is a wonderful idea--the last thing you need is to be dealing with crap when you need to get better.
Going public on the Internet generally gets results you might not get otherwise. Hope this helps, Cary.
*Please ask questions, agitate, and annoy those sold-out medical gals and guys who need to take Your blood pressure in the old fashion way, and not by the impersonal, and silly, VA- gadget - it's an electrical wall-pump!
Oh, high blood pressure!
and the neurologist Doc!
a MD GYN wild surgeon!
bless `Care Cary Tennis!
I love toothless vagrants!
A Moon is a bright swing!
I's go swing on the Moon!
Good to know your alive!
'What you treehuggers and "tutchy feeling" "liberals" miss is the drive and dicepline the tea party fanatics have.

So just a free piece of advice; GET GET YOUR ASS IN DC AND DEMONSTRATE'

after we pay the rent, car insurance, electric bill, buy a few groceries, co-pay on meds etc there isn't enough left over to get across town let alone dc.
this is very interesting, coming on the heels as it does, of Anthem Blue Cross of California's CEO Cynthia Miller questioning before a House subcommittee last week. She was trying to rationalize to the members of the committee why ABC of CA should be allowed to increase premiums by 39%. Her answer? Without blinking she said they were not making enough of a profit. She, by the way, receives compensation of over $9 million a year.
Cary, I am going to fill out and mail your grievance form. I hope the other 30 or more people who rated this post will also. But I suggest you or someone for you will also call your state and federal representatives.
Hoping for the best for you. Flora
Cary please send me a PM with your subscriber number so it goes to the right place. thanks. F
I have battled long and hard with health insurance companies. They are out to take you for every penny, and I have no compunction about turning those tables around to the very best of my abilities.

No guilt and no apologies!
Kick them in their nutz, Cary!
This post made me so angry! It is bad enough that we are often denied medications, procedures, and surgeries that, while necessary, are less urgent than your situation. But this is really beyond the pale. In case some of your readers do not really know what "standard of care" means, I have included a definition. "In medicine, treatment that experts agree is appropriate, accepted, and widely used. Health care providers are obligated to provide patients with the standard of care. Also called best practice and standard therapy."-National Cancer Institute. Wow. Experts agree that the treatment is appropriate, accepted, and widely used, and health providers are held to provide it. In fact, not doing so is grounds for a malpractice suit. But your insurance company is refusing to pay for it-- not an experimental treatment, not one that could be argued is unnecessary or of dubious value-- but the standard of care. This is inexcusable.

Use every means available to you to fight this, Cary, and do not feel guilty about using any advantage that your media position gives you. You are only asking for what is right. Call local television and radio stations and newspapers and ask them to tell your story. Call your senator and representative. And don't give up with Blue Cross. Appeal. Have your doctor write a letter. Even better, have your attorney write a letter. You may think you are doing this just for you(not that there's anything wrong with that-- it's your life we're talking about) but you are not. What is happening to you has and is happening to thousands of others, and you are speaking for them as well as yourself. They need someone who has a voice to speak up in their behalf. Many are too willing to accept that there is nothing they can do, or are too ill to have the energy to protest. In Christopher Reeves' book, Still Me, he stated that this is exactly what the insurance companies count on. Those who do fight their denials of services often do win in the end.

I am really glad that you posted this. Everyone does need to know that this sort of thing really happens-- that every day people are denied the care that could save their lives. And broadcasting it to your Salon audience isn't a bad way to start. Of course, I will file a grievance on your behalf. As always, my thoughts and prayers are with you. Hopefully this horrible situation will be resolved quickly so that you can get necessary treatment without further delay.
If you haven't already, you might want to contact the Chordoma Foundation (http://www.chordomafoundation.org). They may have experience with insurance companies trying to claim that proton-beam radiation is "experimental" rather than standard care.

I don't know if your policy is purchased by you or through Salon. If it is through Salon you could ask them to contact Blue Cross on your behalf. If (like me) you have an individual policy, you will have to use the State Insurance Board, a medical advocate and/or attorney, and public exposure (like this) to pressure them to do the right thing.

Good luck to you and please do reach out here any time you need to. The information we share among ourselves can help all of us so you should not feel that your use of your media position is in any way selfish.
Fight it Cary, those greedy bastards have the money! Call Dr Oz, call Oprah, send your denial letter to Obama himself. Just Don't Give Up!!
I'd suggest you contact your congresscritter and tell them your story. And your local elected officials and the media as well. Anthem Blue Cross can ill afford more bad PR right now. They're being blasted already because of their 40 percent hike in premiums.

And T.S., keep on repeating that talking point you heard Limpdick say if it makes you feel better. The truth is that right now, Cary has no choice about which insurance company to go with. If he leaves his current insurance company, it is highly unlikely that he'll get coverage from another one. And if he does, his current disease will be considered a pre-existing condition and not covered. But hey, if slamming the government makes you feel better, feel free.
Sh*T Cary! Good for you in going viral. I will fill out that pdf in multiple personaities for you. As if living with cancer isn't stressful enough. It's inhuman.

Every year, every freaking year, I must gird my wee uniboob to do battle with my Goliath insurer, to get their approval for a breast MRI, the standard in yearly post breast cancer screening. Why do they make me do this every year? Seriously! Just give me a lifetime approval. That's how it is going to be.

oooooo. I'm so mad my typing fingers are kinda bashing in the plastic keys. Sally Smith. Peggy Doe. Alice B. Toklas. We're going to apply for some nice proton beam rad. If they are paying someone to screen these apps, they might as well give them something to do.
Hoping this helps Gary,this corporate country needs serious change, better days!RRR
Folks, like me Cary lives in San Francisco. In the House we are represented by Nancy Pelosi. She's a little busy right now.

Also although Blue Cross and Blue Shield have merged in many states, California is not one of them. California Blue Shield is not related to or affiliated with California Blue Cross.
It seems like Kuhbler-Ross' series of numbers on death and dying, you are into the next number on dealing with post surgical care. As you mentioned you were the "Star in the ICU", (which I too always find a transformative, surreal existence. To finally truly wake up and understand how your body has been lovingly violated is a truly unique experience. Having Crohn's disase, my surgeon described to me that, "I ran the full length of your intestinal tract through my hand like a rope, excising the scar tissue and sewing the healthy tissue back together." And so I go in for him to "shorten my spool" from time to time, having to hold a pillow to my stomach for a month whenever I hear a half decent joke or to cough.), now you come past the acceptance to "Bargaining". But because you actually suvived the surgery, you do it with BS instead of G-D! (Yet they both seem to have a certain omiscience as to what you do or do not require to survive. Isn't that amazing?
Speaking truth to power:
The fact that you have an advocate fighting behind the scenes is great. I hope they find a way to get through the BS, to get through to the BS! Still, as in most cases, the squeaky wheel gets the grease. And I'd be upset if you did NOT use your metaphorical meteorical media power to ensure this set of truth is spoken to the power, in this case, a big load of BS? And I BS you NOT! Because if you can get some help, you can start a precedent for others with the same Chordoma, but a different media umbilical cord, (or lack thereof).
It must seem strange to you, a man who solves problems of many other's lives on a weekly basis simply with words. But words, while they may solve the paperwork problem, won't cure the the Chordoma in the end. And yet, words just may get you where you need to be again, (in a chair getting the radiation you need!). Aren't you glad you did that English Major thing after all?
Seriously, I try tongue in cheek to bring you a little smile, and yet I know the battleground of which you speak. We often lose minor skirmishes but eventually wind up winning the war, especially if we are squaky enough. So I bid you well in your bid to have BS see the light!
If only I could go in front of congress to explain why I needed to raise my prices 39% while automatically denying every procedure the first time. Don't let them do this Cary! You are walking the right path by getting this out there. Don't think twice. If you get approved, so shall someone else, who does not have the powers you do. Tell me where to sign buddy. I'm there!
If Pelosi is Cary's congresscritter, all the better. She can use Cary's story to help round up votes for health care reform and take the insurance companies to task for the denial of care to him. And the cameras will be on her.
Cary, I wish you well.

I do think your post is a bit incomplete since your comment about "standard of care" makes it seem like this is a common treatment.

Some quick research found that there were 26 of these machines in the world at the end of 2008. One article from August 2009 I found at CBS News said this: "With only six proton centers in the U.S. and 25 to 30 centers in the world, most doctors don't readily recommend the treatment. In addition to their size, proton accelerator machines are up to three stories high and can cost $100 million to build. "

In contrast to the 6 machines in the US, I found that: "Britain has one proton therapy centre, at Clatterbridge Hospital, Wirral, but it can treat only up to 130 of the 1,500 patients a year who could benefit from this approach."

Given the current debate about how to reduce health care costs, I think a balanced post would describe how your insurance company may be preserving its ability to pay for many other treatments for many other patients by not spending large amounts of money for uncommon treatments for one person.

As it is, T.S. is correct that the good news is that you are battling a private company which means you can sue them or otherwise cut a deal with them whereas rationed care from the federal government will likely present you with less leverage.

Again, I wish you well.
For you–– I'll do everything I can!
Bon courage!
Rated UP!
@McGarrett50 and T.S.

Here’s a comment taken from the same article published at Salon.com. I’m wondering how many private health insurance companies would do the same in the U.S. Given this post, we already know the answer.

Saturday, March 20, 2010 06:57 AM

Energy to fight disease not insurance company

At the risk of being attacked as a snail-eating surrender frog (or whatever) - a few weeks ago a friend of ours in France was diagnosed with the same thing as Cary Tennis - I discovered this while Googling the name of the disease. Not only was it an extraordinary coincidence - it's a very rare disease - it was comforting to me to see that the treatment prescribed was the same. Our friend is now in Switzerland receiving the radiation treatment - it doesn't exist yet in France so the health system is paying for the treatment to be done in Zurich, plus transportation and lodging. His precious energy is being used to fight the disease - not the insurance company. I'm so sorry Cary.

—aladdin49
Read aladdin49's other letters

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McGarrett50, the fact that a treatment is uncommon doesn't mean it is not the standard of care for a particular disease. The type of cancer that has afflicted Cary is an uncommon cancer, but the standard treatment for sacral chordoma is surgery and proton-beam radiation. Since the disease is uncommon, it isn't surprising that the treatment is as well.

You write, "...your insurance company may be preserving its ability to pay for many other treatments for many other patients by not spending large amounts of money for uncommon treatments for one person." If this is not rationing health care, then I don't know what is. Now that we have hopefully cleared up the difference between "uncommon" and "standard of care" I would be interested in knowing if you still think the insurance company should deny Cary the appropriate treatment--the one that is the accepted standard of treatment for this type of cancer--because the high cost of his treatment could cover, say, thousands of office visits for diabetics.
Contact the Olbermann show and the Maddow show too. This needs a heavy rotation on MSNBC to stop it.

And contact your congress person. If it's who I think it is you should get some very big traction indeed from pressure from her office.
I did a post about this to provide a better forum to express some ideas. It answers some of the questions (not all) people asked me here.

Is Insurance Company Really Wishing Death to Cary Tennis
Cary-
I've had quite a bit of experience with both the media and a high profile dispute. If I may, I'd like to offer some suggestions. All this falls under the category of "if you haven't done so already":

1. Enlist the support of your surgeon. Make sure he has documented that the recommended treatment is not only standard, but in your case, could make the difference between life and death. Make sure he is willing/available to do interviews- both print and media alike. You'll need an expert on your side for this one, because your condition is rare and most laypeople are not going to know whether this is the right treatment for you or not.

2. Prepare your case in writing. Provide a timeline of the treatment you've had so far, and the specifics of this treatment which is both recommended and necessary.

3. Get a lawyer. You need someone who can not only advocate for you but who understands the legality of this issue. Find one who is media experienced and savvy.

4. Have your media advocate contact both local and national media outlets with your story. Keith Olbermann and Rachel Maddow are great suggestions. Michael Moore would be another terrific contact. I have local contact with the SF Chronicle if you would like them, feel free to write me at jenniferportnick @ gmail dotcom (no spaces, dot is actually a dot) for further details.

5. In addition to filing a grievance with Blue Cross, make sure you have raised your issue to the highest level possible. I'm honestly not sure what a flood of grievance documents will do from people who don't personally know you and/or have the information defend this to Blue Cross. But if you get your experts lined up, and use the media to your advantage, you could get their attention in a way that will greatly influence this outcome.

Wishing you all the best-

Jennifer Portnick
Cary - this is your old friend Suze, and I say ...go get em! As a pediatrician, I deal every day with denial of care for treatments that are standard of care. Don't take it personally, continue to marshall EVERY BIT of resource available to you to make this happen, stay at it relentlessly, and believe it will happen. It will. And, BTW, I understand about the impatience we all have with healing. I know personally, it is a hard lesson to learn.
Cary, I too suffer from several diseases that are killing me. I have no insurance, but have contacted private organizations to help provide me with various treatments which are considered by both the FDA and Insurance companies to be Alternative and therefore not covered.
Think outside the box and take control of your health...don't wait on Obama care...it won't help you.
OTOH, the uninsured like me would never even get the chance to have the initial surgery. I hope you get the treatment you need; I hope I never need treatment for anything.
Oh dear! This is a concern that you are being denied. I'm familiar with Loma Linda since they are the ones who brought my crashed pilot buddy, charlie stone, back into existence and that proton beam therapy is phenomenal. Your post brings to mind several grievances I have regarding cancer and cancer therapies as dictated by the FDA and insurance companies. If there is anything I can do to help you in your quest for treatment.. I'm at your disposal Cary. God bless and good luck!
I'm lost for words.
I'm still wondering about Salon's role in all this. Do you get your insurance through Salon? What are they doing for you? Are you on a paid or unpaid leave of absence, by the way? They're splashing your situation all over Salon and Open Salon, so I'd say they owe you something.

Ironically, the health insurance reform that passed last night will mean more people will see pressure put on them to forego proton therapy and bear the side-effects of x-rays. Medicare, for example, reviewed proton therapy and decided that although it the long-term cure rates may be no better than x-ray therapy there are benefits to proton therapy, so they continue to cover it. That position is under attack from people who argue it is more cost effective for society to treat the side effects of traditional radiation than to eliminate them through proton therapy.

As I told you at Salon, if Loma Linda won't treat you without insurance, you're in the wrong place.
I'm sure you've seen the NAPT site. I noticed this morning that they have a section devoted to "insurance strategies."
My grievance form is in the mail as . . . of . . . . right . . . . . NOW! For I am truly aggrieved at their callous inhumanity generally, and more specifically toward you.
Given the current events...the media is the way to go...they will pick this story up in a heartbeat. I would pound their phone pavement and e-mail paths this week like crazy. Radio is a great idea as well.
"And, people want to turn their health care over to the private industry. Third way politics is going to be the death of the rights of citizens in this country. "

The biggest, by percentage of claims, denier of benefits for medical care is our government through medicare. BCBS, like all insurance companies, is afraid of being sued for denial of claims. So push them and I hope you get the treatment. I lived in that area and it's a great hospital.
Hmmm. This is the latest death panel craze. I have just been denied proton treatment for prostate cancer by BCBS of Alabama. They claim its not "superior" to other treatments in survival rates. They give zero credence to the QUALITY of that survival time and the superior quality of life following proton therapy. Its all about money folks all about their profits.