I'm filing a grievance with Blue Shield -- and you can, too!
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.
James M. Emmerling
stanleybing
Sandra Stephens
Julie Delio
Denise LeBlanc-Bock
Arlene Green
Salon.com
Comments
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.
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
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.
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.
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!
Good luck!
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.
Best of luck to you, and hopefully, the death panel decides to get logical, get moral, and stop destroying American lives.
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.
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.)
With the government....you'll die while standing in line.
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!
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.
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
No guilt and no apologies!
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.
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.
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.
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.
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.
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!
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.
Bon courage!
Rated UP!
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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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.
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.
Is Insurance Company Really Wishing Death to Cary Tennis
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
Think outside the box and take control of your health...don't wait on Obama care...it won't help you.
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.
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.