HEALTH PLANS: Patient activism using the web

So I was sent an appeal by a grandmother upset that her grand-son was denied surgery by his insurer for what looks to be a pretty unpleasant condition, called Pectus Excavatum.  She has taken the campaign to the web.  I can’t comment on this particular case or the surgery in general, other than to say that if it was my kid, I’d want the surgery done too.  But this is a wave of things to come.

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  1. Awesome write-up, I am a huge believer in placing comments on weblogs to allow your blog editors know they’ve created something of value to the web!

  2. I am looking for legal advice re: fighting insurance denial for artificial disc replacement under New York State insurance law on the grounds of experimentality. I have had more surgeons than I can count tell me that given my current spine configuration, the fusion that insurance would pay for would result in a lifetime of disability. If I receive ADR surgery, I have a 90% chance of a normal life, again, given my condition and circumstance. Catch this: the ADR surgery would actually be CHEAPER AND comes with better results. Any ideas? I can’t afford to pay for surgery out of pocket. In my early 40’s I also can’t afford to be disabled forever. It’s been two years since I’ve been able to do anything remotely normal with this spine and I am not sleeping at night because of pain and worry.

  3. I am looking for legal advice re: fighting insurance denial for artificial disc replacement under New York State insurance law on the grounds of experimentality. I have had more surgeons than I can count tell me that given my current spine configuration, the fusion that insurance would pay for would result in a lifetime of disability. If I receive ADR surgery, I have a 90% chance of a normal life, again, given my condition and circumstance. Catch this: the ADR surgery would actually be CHEAPER AND comes with better results. Any ideas? I can’t afford to pay for surgery out of pocket. In my early 40’s I also can’t afford to be disabled forever. It’s been two years since I’ve been able to do anything remotely normal with this spine and I am not sleeping at night because of pain and worry.

  4. I am looking for legal advice re: fighting insurance denial for artificial disc replacement under New York State insurance law on the grounds of experimentality. I have had more surgeons than I can count tell me that given my current spine configuration, the fusion that insurance would pay for would result in a lifetime of disability. If I receive ADR surgery, I have a 90% chance of a normal life, again, given my condition and circumstance. Catch this: the ADR surgery would actually be CHEAPER AND comes with better results. Any ideas? I can’t afford to pay for surgery out of pocket. In my early 40’s I also can’t afford to be disabled forever. It’s been two years since I’ve been able to do anything remotely normal with this spine and I am not sleeping at night because of pain and worry.

  5. Hey North Carolinians! I just discovered a big thing BCBS is not telling people. As we are mostly part of the boomer generation I had found out that BCBS pays for colon cancver screening if you are 50 or over. One HUGE caveat! If you get it done at a hospital (which I assumed you had to do) you get a huge bill because as surgery it goes toward your deductible. If I had gone to an outpatient center like a phyicians office or an Endoscopic facility all I have to pay is my COPAY. Boy did I feel ripped off! I talked to BCBS and they had no reason why the rep did not tell me this. I googled facilities for this and one came up where you just have to pay a copay. It is called Triangle Endoscopy Center in Durham. Just thought I would pass on onfo! If I got taken you should not have to!

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  7. M-Care has retracted their refusal to cover our son’s issue. I would like to thank our doctors, and their staff for their efforts that resulted in reversal of the original decision. Surgery is scheduled for Dec. 27th.

  8. Hello,
    My 14 year old son is also afflicted with pectus carinatum. After examination, surgery was scheduled at Mott Childrens Hospital, Ann Arbor Michigan. We have also run into a similar refusal by our insurance company, M-Care, to cover “cosmetic surgery” by their determination. We do not consider this to be cosmetic, but rather a deformity, and therefore insurable. Our son not only has become self-conscious of the condition, and has withdrawn from many activities normal for an active teen. He participates in most school sports, has extraordinary athletic ability, but is hampered by limited breathing recovery. We have appealed the decision, but anticipate a second refusal to correct this abnormality. We have excellent legal representation, however, if litigation can be avoided, we prefer to proceed accordingly. We would appreciate any guidance, assistance, or information concerning the best approach to reverse this arbitrary decision. Our insurance premiums, including employer contributions, in the past 6 years, will approach $50,000 by year end. We are totally appalled that an abnormal tissue growth is considered cosmetic, a “tummy tuck” yes (which is covered by the way), but not a chest wall deformity.
    Thank you in advance for your time, and any support or direction you could provide.

  9. My son also has Pectus Excavatum. He is 14 years old and it’s effecting him terribly. Mostly mentally. He wears heavy jacket’s to school so kids won’t tease him and it will be 90 degrees out. We have Kaiser and I’ve taken him to see his doctor who wouldn’t give us a referral to see a surgeon. After some research online I noticed Kaiser does offer this surgery. Has anyone gotten approved for this surgery that has Kaiser??

  10. My daughter has just been turned down for pectus excavatum surgery by Health America ?
    Does anyone have any advice on how I might successfully appeal this ?
    Thank You !

  11. Dear Grandma Dee,
    What is your e mail my son needs the same surgery your grandson had. I need to write to you. Kindest Regards, Sherry

  12. I was just denied corrective surgery for Pectus Excavatum by BCBS. They claimed that my surgery was simply for cosmetic reasons also. I have had a CT scan done as well as breathing tests that prove that my lungs and heart are being constricted by my condition. I am in the middle of filing an appeal with BCBS. I hope to be approved for surgery.

  13. gadfly,
    The first 7-11 owner that enrolled in an MSA in January 1997 did have a heart attack. I took him off a small group plan. So, he can now sell his business if he wants too. Also, he followed the doc’s advice and his premium plummetted because he quit smoking. He and his wife are about 55 years old now and his premiums just went over $300/month this year. The 7-11 newsletter reported he saved over $7,000 a year in premiums way back then when he still smoked.
    Here is another small group plan question if you want to answer another one. If the owner or any employee of a small group of 4 gets cancer; can the small group insurer raise their rates because of that claim?

  14. //arguement against a small group plan //
    Nope, because they guy probably wouldn’t have enough money to keep paying into his HSA, and he would be up a creek once he ran out of his existing HSA savings. Universal insurance would be his only salvation.
    ROTFLMAO!!! Is this a Ron from another dimension?
    //Also, it’s individual health insurance that is medically underwritten and not any HSA that is attached to them.//
    But you need to get the insurance with an HSA, so there’s no sense in separating the two.
    I’m wondering if there’s going to be a lot of backlash over the next few years when people start to encounter problems with HSAs and start blaming the hucksters that were inflating the benefits while hiding the drawbacks.

  15. gadfly, you wrote:
    //will he lose his small group plan now that he is uninsurable?//
    //Excellent argument for universal health insurance.//
    It’s also an excellent arguement against a small group plan that you promote.
    YOU CONTINUE: //Nice attempt at petty self-serving not to mention sexist emotional manipulation.//
    You’re the one who was using sexist emotional manipulation and I, politely as I could, pointed it out.
    Also, it’s individual health insurance that is medically underwritten and not any HSA that is attached to them. I have said before that sick people love HSAs because they like to purchase medical, vision and dental expenses with pre-tax dollars too.

  16. //Nice rant on males on Fathers Day.//
    Are you saying that people have to agree with your BS just because you’re a male and it was Father’s Day? Nice attempt at petty self-serving not to mention sexist emotional manipulation.
    //no medical underwriting//
    Several people on this blog have mentioned going through the underwriting process for an HSA, and they have described it as an obstacle.
    //Lucky Jeb Bush doesn’t have you as one of his advisors.//
    The feeling is mutual.
    //will he lose his small group plan now that he is uninsurable?//
    Excellent argument for universal health insurance.

  17. gadfly,
    Nice rant on males on Fathers Day.
    Florida has just opened the HSA as an option for state employees. I have told you before there is no medical underwriting for a tax free HSA. Lucky Jeb Bush doesn’t have you as one of his advisors.
    I like this jingle better:
    Managed Care, beware.
    The HSA is here to stay.
    Get yours from the land where the palm trees sway.
    When you say that a small business owner (Gas station owner) should get a small group plan, I have one question: If the owner has a heart attack and wants to sell his business and retire; will he lose his small group plan now that he is uninsurable?
    Like Jimmy Buffett says, “The answers are the easy part, it’s the questions that raise the doubt.”

  18. //problems with ERISA deminishing the Union employees’ legal rights.//
    That just means that the unions need to get back on the horse and use the power of collective bargaining to protect their members. That’s what unions or for. When the individual hat-in-hand approach starts working, you let me know.
    //It is illegal for employers to purchase low cost individual insurance//
    My understanding is that this is because small employers will cherry-pick certain employees, which among other things might have the collective effect of racial or gender discrimination. Small businesses need to be purchasing small group or joining a larger group. If group insurance is over-priced, than that issue needs to be addressed rather than giving a employers some extra power that they will probably use to reward people for being white males “like them” or to reward people for performing some under-the-table services.
    Better yet, let’s use universal/single-payer combo to take the insurance burden off businesses all together. There’s absolutely no reason that health care should be linked to specific contracts for labor. This is just stupid, and small businesses need to learn they are getting dunked by the small pool rates because they haven’t joined the call for universal/single payer.
    //compensation without taxation.//
    Ooh, free money just like stock options.
    HSAs are a tax shelter that disproportionately favors the wealthy who can invest more. The investment return remains high because the sick people are weeded out. What a scam. Of course the very people who make big political donations and hire lobbyists will be promoting HSAs all over the hill, creating a distraction from the real repairs that need to be made to keep this a great nation of healthy, strong, productive people.
    How about this jingle:
    Rich Guys Say, I Get More, More, More With an HSA!

  19. gadfly, you wrote, “I hope every medical worker in the country unionizes:”
    Do you want all medical workers to have the same problem as Kevin? He has Union insurance. Notice how Grandma D isn’t saying the Union helped. Read the thread and the problems with ERISA deminishing the Union employees’ legal rights.
    Doctors and their staffs are called small business. It is illegal for employers to purchase low cost individual insurance that only costs $200 a month for an employees’ family. They must purchase a dangerous over-priced group health employee plan that was reported in Florida to cost over $1,000 a month. Let’s stop the discrimination at company worksites against low cost individual insurance so millions of American workers can become insured. Hopefully, they will choose HSA qualifying coverage so the employer can make HSA deposits for their workers.
    No FICA tax on HSA employer deposits. Employees pay FICA tax on dollars in their paycheck. This is matched by the employer. When employers and employees band together and cut the unions and the IRS out, everybody wins. Employers love HSAs when they finally figure the HSA out. They say, “Heck, this is compensation without taxation.”

  20. //She works in a Doctor’s office//
    I had to go to a retinal specialist last year, and I was surprised to learn that the technician who gave me an angiogram had no health insurance. None of the office staff had health insurance. The opthalmologist offices were right on the edge of a hospital! (Summit) Just the thought employers in the medical profession will not look after the health care of their employees is outrageous! The problem with a total free market economy and “compassionate conservativism” is that people use that freedom to squirm out of their responsibility to others. I hope every medical worker in the country unionizes: when doctors start running around and hand-wringing over how inconvenient those unions are, I’m going to remind them that they had their chance to do the right thing on their own accord and screwed it up with their own greed.

  21. Ron.Thanks for the information and praise. I really did not do anything except put the Plea for Help out there & thankfully with every one efforts they finally caved in. :):) wway3tv did a great job.
    I don’t have medical coverage either. I have several medicial problems, without my Doctor giving my samples every month I would be in pure misery to live with.
    I do not go to the Doctor,unless I cannot help it..you know the saying 1 to 10 (pain scale) mine has to be an 8.
    My daughter who has lupus and fms and other things
    cannot get coverage either. She works in a Doctor’s office as a lab tech..they do not want to treat her..So she has to go out side our area for treatment. Sad.
    My husband gets treated through the V.A. It takes him a year to get appoints..even for stents ..yes.. a year!
    I guess that is why I got so %$#$% MAD. WE flew all the way to N.C. to be there to support my son and wife and Kevin. Then The Big Blue pulled the rug out.
    While I was there ..I wacthed one commercial after another put out by ‘BLUE’.. TELLING NORTH CAROLINA
    just how ‘WONDERFUL’ there company is. (is not!!)
    It really made me mad. My son pays top dollars to them like the rest of his union members every quarter. They are ‘ raking’ in the $$$. Then they refused my grandson surgery. The second thing that upset me was..I was born in Western, New York..that there Doctor’s treated the Doctor opinion (N.C.)like he was a ‘hick”.
    Wow..I got my blood pressure on the rise again and this could turn into a very long post. LOL
    I know you can understand how upset and frustrated this all had been.
    I think what Matt does on this blog and all of you that post are fantastic. the Amercian middle class (soon to dissapear) need your help and appreaciate would to do to try and change what is happening in America.
    I have been telling everyone about this blog. So keep up the good work. 🙂
    thanks to all.
    Grandma Dee

  22. Newsflash: Grand Ma Dee Smacks Empire BCBS
    The power of the individual VS Goofballs
    Your grandson will lose his coverage at a majority age, I assume. I am not a medical underwriter but I know a lot about medical underwriting and how it’s changing. I think he will be able to get individual coverage in the future as long as you have 100% recovery as the results of the surgery. Also, his asthma must be under control with or without medication. Which would be different than my son who is uninsurable with medical underwriting for life.
    A good clause to have on a health insurance contract would be that the parents of your grandson could now switch off that Empire plan and leave just the son on at greatly reduced premiums. Look at your contract but I would bet they can’t. But check out how much the Empire premium would be for just the father and grandson and find out how much you would save if the mother got insurance of her choice. If the Empire premium dropped to $300 a month and individual insurance with a tax free HSA only costs $150 a month, my daughter would be off that Empire plan so fast it would make your head spin.
    Everybody must be pretty proud of Grandma Dee in your family. I love your last post on how you pressed Empire BCBS against the wall without mercy, ha ha.

  23. When we first arrived in Carolina, we told the kids to call the tv station. Blue Cross/sheild runs such wonderful caring ad on TV. Several times a day.
    The tv people came & the coverage begin. But..the BIG BLUE INSURANCE COMPANY SAID ‘NO’ FOR THE SECOND TIME.
    WHEN WE CAME HOME FROM N.C. I sent out e-mails to every major news station and political people ophra & 20/20, Good morning America etc. The New York ‘ABC’ station, the New York times. I have been basically glued to my computer sending e-mail after e-mail..posting to our blog and posting to Matt’s.
    CNN was one of the first that I contacted.
    I then found Matthew site. Thank you for mentioning our us on your site. Matthew.
    I also e-mailed them all again & sent the blog site and Matthew site address to ((BSBC)CEO & his media and his appeals people all an personal invitation to the blog site and Matthew’s site and told them that I had heard that CNN was going to run the story.
    So, I really don’t know the track all of this took..weather it was my e-mail or wway3tv..or someone at cnn saw the story and decided to run it.
    My main concern in all of this was just to get my grand son his surgery.
    I feel that it was a little bit of everything and everyone that made this turn into a success story.
    There is a video on the wway3tv site tonight. They say that ‘BLUE’ WAS NOT affected BY THE MEDIA COVERAGE ETC. Lol ok.. They said.. there out side doctor decided that it was medically needed now! HMMM..it was that out side Doctor that give it a hands down on the appeal.
    In my heart,I know that everyone helped. I may never know to what degree. 🙂
    Thank you all…I will keep you posted as this is a long surgery..taking place on tuesday.
    Good night & God Bless you all.
    Grandma Dee

  24. Congratulations, Grandma Dee! It’s so nice to see personal activism that works.
    I disagree about the remarks about how this should have been handled by lawyers, but only because from personal experience I know it’s very difficult to find a lawyer. The matching process is not rational from the point of view of normal people. It requires endless inquiry notes, and most of the time you don’t even get a reply. It’s also psychologically difficult to repeat your traumatic story over and over and over again – especially when the end of that traumatic story is going to be rejection from someone who could help you.
    I agree that CNN did the trick. How did the story get moved from the local station to CNN?

  25. Insurance Company Reverses Decision, Covers Teen’s Surgery
    Jun 16, 2005, 8:13 PM
    It’s an unbelievable turn of events for a Wilmington teenager and his family. Fifteen-year-old Kevin Dick just found out that Empire Blue Cross Blue Shield will pay for an operation to help him breathe. Over the past month, the insurance company had repeatedly denied coverage for a surgery Kevin’s doctors said he needed.
    “I called my husband right away, and he was in shock. I called my father, I’ve called everybody, and it’s just a huge relief for us,” Kevin’s mother Carla told NewsChannel 3. For the past year, she’s been on an emotional roller coaster. As her son’s unusual chest deformity grew more pronounced it began to restrict his breathing.
    Doctors said the condition could be fixed through surgery, but then Empire Blue Cross Blue Shield refused to pay for it. After an emotional series of appeals, and our extensive coverage, insurance company executives have changed their minds. “It’s been painful for him and my family,” said Kevin’s little sister, Hannah. “I’m still pretty mad at them, but I’m glad they finally came through.”
    Kevin is going to need some extra T.L.C. after the surgery. Doctors will completely reconstruct his chest cavity, and it will take about three months for him to heal. But after that, he has a lot to look forward to. “I’m just happy. I didn’t think it was actually going to happen, I was just glad it was approved,” said Kevin, shortly after getting the news from Blue Cross Blue Shield in New York.
    “He’s going to be able to have a normal life. He’s going to be able to start playing basketball again, which he loves so much, and he’s going to be able to breathe easier and hang out with his friends at the beach and do all these wonderful things that he deserves to be able to do,” said Carla.
    Dr. Don Nakayama will perform Kevin’s surgery at New Hanover Regional Medical Center on Tuesday morning. Kevin’s extended family had flown into town for his original surgery date earlier this month. They won’t be able to fly out again on such short notice, but they, along with a lot of other people, will be with Kevin in spirit.
    Empire Blue Cross Blue Shield says their decision to cover Kevin’s surgery has nothing to do with all the TV coverage. During the second appeal, another physician the insurance company hired to review Kevin’s case finally agreed that the surgery was indeed medically necessary.
    — Reported by: Ann McAdams
    All content © Copyright 2000 – 2005 WorldNow and WWAY. All Rights Reserved.
    For more information on this site, please read our Privacy Policy and Terms of Service.

  26. thank you to everyone that helped out with this problem.
    our many thanks goes to the following.
    to: wway3tv & Ann and her crew & the management of the tv station in wilimingtion.N.C.
    To: Mattew Holt..who runs the health blog site http://matthewholt.typepad.com/the_health_care_blog/
    To: all the people that blog on his site with there helpful information.
    To:cnn for picking up the story from wwayetv and airing on there station. I missed it though:(
    So, if any body finds it and would link it to me or post it here…many thanks…dddick@bresnan.net
    To: Kevin Dick for being brave and holding up through this battle. Grandma & pa send there love and will be thinking about him on Tuesday at 5:00 am and for the 4 or 5 hours it takes to have the surgery completed.
    To:Dr Nakayama. M.D. professor Surgery for standing TALL and for fighting for our Kevin and what is right.
    To: Ron & Carla..just for being his parents. (Ron is my son). They have really been through the mill over this entire ordeal.
    To: Every one else in the family and out side the family that were praying for Kevin to have a successful outcome.
    Note. If any one with PC or PE would like some help..just contact me. I will do what I can to Help you fight for the right to have this surgery.
    Thank you
    Grandma Dee

  27. Kevin is getting surgery in 5 days…WOW..it will be at 5:00 in the morning.
    When they changed there minds…they got right to it.
    Cnn did air it yesterday..I did not know and I missed it..can’t find it on there web site either??
    If anyone see it …please…send me the links.
    Thank you, once again Matthew…and all of you that helped.
    grand ma Dee

  28. FLASH….BSBC..called Carla and told her that they would do the surgery. Being gun shy after two rejections..I will wait to see it in black and white.
    They are suppose to be sending down the paper work.
    I want to thank wway3tv..they ran 3 interviews, The CNN people, Matthew for posting it here, Each and every one of you for your input…suggestions…and help. GOD BLESS YOU ALL!
    I am so excited..I am trying not to be..but can not help it.
    Who ever thought that it could be done? This is a lesson well learn. This is still America folks..and finding the Right people to help was such a blessing.
    Thank you all.
    I could go on and on..I am soo happy.
    Thank you all and I will keep you posted and let you know when she gets the paper work and how the surgery goes….
    smiles to yo all.
    Grandma Dee

  29. Actually I think Harvey is right. As the union is probably self insured, they are actually setting the rules–Empire is just administering them. Therefore it can change them under pressure from its members or even pay for this care directly — after all it’s their bank account that the cost of the care will come out of, whoever approves it.
    And on a cynical note, why aren’t the hospital and doctor involved fighting this a little harder? They are the ones who will end up getting the money after all!
    And, of course, I don’t mind putting this on my blog for 2 reasons. 1) To educate big insurers that this type of new activism is a real issue they need to pay attention to, and 2) if it is potentially unfair denial (and of course I am not medically qualified to say either way) it should be discussed more openly.

  30. Positive media coverage can also affect the outcome of a lawsuit. I don’t see it as begging, but rather using the same kind of PR the insurance companies do to influence public opinion. If public opinion is on your side the insurance company may be more apt to settle.
    It’s difficult for an individual to get his or her story on the news, or to get more than token help from political representatives, but it isn’t impossible. My philosophy has always been to contact everyone and try everything I can think of because you never know what will pay off.
    Mrs. Dick, sad to say it works this way, but because this is happening to a child you are in a better position for getting sympathetic media coverage, which translates into public sympathy. Insurance companies spend gazillions of dollars manipulating the media, and our only hope as activists is to try to beat them at their own game…on a much smaller budget of course =)
    Best wishes!

  31. Harvey may be correct.
    Keep trying everything. Matthew posted an article from Brian Grow yesterday from BusinessWeek. He has written about large insurance companies abusing their customers.
    3475 Lenox Rd. NE
    Suite 930
    Atlanta, GA 30326
    (This number may help contact Brian Grow)
    Harvey’s site said it’s better not to have an ERISA plan. I know that is correct.

  32. Why all this talk of PR to beg the insurer to change its mind, when he should be getting a lawyer and suing to MAKE them change their mind!
    Since it’s through employment, it’ll probably be an ERISA case under sec. 502, and legal fees may be available if he wins. Union plans , called Taft-Hartley plans, are governed by ERISA.
    I agree that the boy should have the surgery immediately, and then sue the plan for reimbursement.
    There are plenty of lawyers that handle such ERISA cases.

  33. I believe that former Senator Edwards has a blog of some sort. Otherwise I’m not sure how to contact him at that center for poverty or what sort of power he has.

  34. Grandma Dee:
    Actually, I believe Ron may be on to something with Senator Edwards. His office might be able to help you. Having worked for a Democrat, I can tell you that if he wants to, he can call Ms. Clinton and put things right in about fifteen seconds. The key is making Senator Edwards want to do that.
    A few basic PR things:
    1).Put a picture up on your blog of Kevin, a yearbook picture or something along those lines. If you don’t know how, go to Kinkos or a local copy place and have them do it for you. Make sure it is small enough to fit on a web page.
    2) Ron knows a lot about insurance. He knows a lot less about the media. Email the New York media.
    In terms of print media: The New York Times rus investigative health stories all the time. Outside of New York you should concentrate on the big papers. The Washington Post runs policy pieces regularly. USA Today often looks at health care from the patient’s perspective. The Boston Globe is widely read for its health coverage. The Los Angeles Times is extremely well regarded for its national and health coverage.
    3).Tip Number three. Keep whatever you write short, sweet and to the point.

  35. Gadfly you wrote, “reporters are swamped and worthy causes that really need a champion fall through the cracks. And even if you get through to a reporter, they might decide to exploit you for a story that will sell papers instead of helping you.”
    Reporters might be swamped by people who are being abused by their insurance carrier but they will censor all articles negative to BCBS in my opinion. For example, millions of sick people have lost their health insurance from group employee plans because they are too sick to work to keep their coverage, yet try and find one article on it, it can’t be done. Newspapers always protect their big advertisers. An additional problem here is the name of the carrier. Because of the BCBS name I don’t think any reporter will touch this even if Empire isn’t advertising much in North Carolina. I’m sure BCBS of NC would not like Empire’s name associated with bad PR and I assume they do advertise in NC.
    Spike wrote, “Whoa, suddenly I feel like I’m in 1992. I can’t believe they’re denying coverage for this service.”
    Yes, the media can turn on coverage of health insurance problems like a faucet when it fits their agenda. It’s called propaganda. Spike isn’t seeing articles anymore and when he saw Matthew post on this story it surprised him. Heck, the newspapers could go to their own HR department and get a list of those who have been fired and do stories on those with medical problems. Don’t hold your breath waiting for this to happen. I know of a woman with a very sick child who works for FOX News. The child was too sick to remain a “Full Time Student” and you might assume what was happening to this young boy with no hair. It’s not uncommon for me to talk to 20 people a week at the end of their COBRA and someone in the family is sick or hurt.
    The Des Moines Register is asking for people with medical problems to contact the paper right now. Their agenda is for Socialized Medicine. They will pick through the stories and only show those that fit their agenda. How many people have lost their insurance from the Register itself since WW-2? Grandma Dick can contact the Register but they would never touch this story because of the name of the insurance carrier.
    Lucky people like Matthew are becoming another source for information. Plus, Matthew is much smarter than a goofy uninformed newspaper reporter. I myself was surprised to see Matthew post this story because insurance carriers could be his clients. His credibility was inched up for me because of this post.
    I am curious what Senator John Edwards said about this child. Was his office contacted?

  36. Grandma Dick – I have been a patient advocate for many years. I had client whose health plan denied him a colonoscopy so he waited- he’s dead now. Another client wanted advice about a particularly problematic foot surgery and now wishes he had gone with the more expensive surgeon as each step he takes is now painful. If there is anyway at all your family can do it – get the surgery.
    I negotiate with doctors and hospitals all the time, and find that prices are not always set in stone. You can continue to appeal – but insurance companies are far less willing to grant them than they were say 10 years ago.
    See what this Doc will do the surgery for, he is clearly advocating for his patient; don’t forget the anesthesiologist, and if the surgeon requires an assistant. See if the hospital will cut you some sort of a discount; how many days is the hospitalization typically? Schedule the surgery at a time when getting discharged won’t be difficult; find a really knowledgeable Medicaid advocate in your state – amazingly, there are quite a few charity programs for special cases – and you may find one that helps even someone who is insured.
    North Carolina may have a “Hill Burton” hospital near you – which offers more charity care. Maybe your local health department will know if there is one near by. If you are able to get some concessions from the provider community, others will more likely offer to help. But you have to ask everyone. This sort of information will not be easily accessed. If it were, everyone would do it.
    And appeal to the union. The IATSE is a self insured plan and could make an exception to their guidelines. Get published in the union’s newsletter, have people begin to pass the hat; members of the show business community are just that – a community.
    Really – consider finding other ways of financing this. Think of what his life will be like ten years from now if he doesn’t get it.
    And Ron – you’re an idiot. Anybody who reads my postings knows I’m a single payer advocate, I have been a trained speaker for PHNP for years, and few things would please me more than to have BCBS et al disappear from the face of the earth.

  37. I’m sure I’ll live to regret this, but Ron, ALL insurance plans are a disgrace to this country and totally abuse citizens. This child with Pectus Excavatum won’t ever be considered for an individual plan because of his health status, just like me and millions of others who might actually have to use the coverage they pay out the gazoo for.
    The reason many people are stuck in employer group plans is because it’s damn near impossible to get an individual plan unless you are young and perfectly healthy. Jeesh!

  38. I said right away to forget the New York media because they won’t cover a story on Empire BCBS abusing citizens.
    I think everybody has learned something today. If Diane’s grandson had individual health insurance she could go to the state insurance commissioner. The consumer would have legal rights. The insured has legal rights and can sue the individual insurance carrier. This is not my area but can Empire even be sued? Under ERISA, can you bring Empire into state court?
    Lets see, group health employee plans just shed their liabilities because of eligibility requirements. Then if the employer has over 20 employees it falls under ERISA so the legal rights of the worker are deminished. This was passed in 1974 to keep the cost of group health employee plans down, as if that helped.
    I’m just waiting for somebody to agree with me that group health employee plans are a disgrace to the country and totally abuse citizens. I mean really, cancelling young womens’ health insurance because they are too sick to work, pathetic.
    Diane’s story that the North Carolina Governor says this is a New York issue. New York can’t help Diane because her grandson lives in North Carolina. This whole thing is too sick. I put people on individual insurance with legal rights and I’m told I am evil. Lin doesn’t want anybody to know in the media, as if they would help, because Empire might feel some distress. I’m so glad my radio commercials say: Got the BLUES, feeling BAD, paying way to much for health insurance?

  39. //Hillary Clinton..who said because I was outta state//
    The same thing happened to me (it wasn’t Hillary Clinton, though – it was someone working the Electronic Medical Record). I thought it was strange that you have to be out of a political representative’s constituency to get the courtesy of a reply.
    I wish you luck with all the media venues your trying. I didn’t have much luck with that myself. I think it’s a sad symbol of the decline of individual rights and protections in this country that the only thing regular people can do is hope that they can get through to the media and find a champion. As a result, reporters are swamped and worthy causes that really need a champion fall through the cracks. And even if you get through to a reporter, they might decide to exploit you for a story that will sell papers instead of helping you.
    I wish you luck, but what this society really needs is some public defense of consumer and civil rights so people wouldn’t have to go around praying a reporter might help.

  40. UCR is an insurance term meaning Usual, Reasonable and Customary charges. That means (kinda) that if your doctor charged you $1 million for a doctor’s office visit the insurance company would say that’s too much. If he usually charges $80 that is what the insurance company will pay. That is very simplistic.
    HSA is a savings account called Health Savings Account. They are designed for tax free deposits, growth and withdrawals and are dedicated to medical, vision and dental expenses. Money that is never taxed simply lasts longer. That is very simplistic too.

  41. I have to ask..what does UCR and HSAs mean ?
    I am sorry to appear so dumb and will probally laugh when it is explained. But, I really don’t know and others are asking me to explain.
    Thank You.
    Grandma Dee

    Reply..not there problem..it is New yorks.
    MY son has His B.A. working on this problem.
    Grandma Dee

  43. You have never mentioned if you contacted the Insurance Commissioner from the state of North Carolina.
    This Union is huge.
    Here is some local chapters to email about your grandson’s problem http://www.iatse-intl.org/directory/links.asp
    Contact their PAC. Senator Clinton can write a letter to a New York insurance company. I suspect this particular insurance company is a very good friend of Hillary.

  44. My son works for the North Caroling Film Industry. He works thru an Union.
    Somewhere buried on my desk amongst all the printed research and post it’s is the funny sounding name.
    The union insures it’s members through Empire Blue Cross Blue Shield in New YOrk.
    Grandma dee

  45. Mrs. Dick,
    Why is your grandson covered by a New York State Blue when he lives in North Carolina?
    Who provides the health benefit? Is it a company or a union? Is the plan insured by BCBS or do they merely provide administrative services?

  46. Gadfly,Hello. I have e-mailed all the political people that I could in the state of New York, North Carolina, Washington D.C. The only peep I heard was from Hillary Clinton..who said because I was outta state..could not help. Then there was a reply for Gov on New YORK..just auotmated..not from him. Then of course N.C. saying that they could not help. Take it to New York.
    Still waiting on the times, oprah, Geradlo, 20/20, ABC new york. etc etc. .plus many other. I have just sat here for days researching information and sending out e-mails and trying to make my blog site “FLY”.
    Grandma Dee

  47. NORTH cAROLINA CAN DO NOTHING! Because, it (Empire BCBS) is a New York based ppo.
    I will see if Carla can get that for me and I will post it.
    Thank you once again for your support and interest and advice.
    Grandma Dee

  48. The actions of political represenatives also often depend on the press. I got a letter from Senator Feinstein (CA) which promised the Governor’s office would help me. When I couldn’t get a response from the Governor, I went back to the Senator to ask if she would try again. She didn’t acknowledge her first letter (claiming neither her nor her staff ever remember mentioning me), and instead she spouted off a quote about how most identity theft is committed by employees. It seems to me that Feinstein has used the press to guage public opinion (where a couple of the articles have been based on pure falsehoods when the reporters tried to fit me into their preconceived hot button issues), and now she thinks the politically advantageous thing to do is grandstand at my expense. It’s better for her if the public maintains a false impression of me than to help a single, unimportant constituent clear the record.
    I’ve also discovered to my dismay that government agencies actually regard the press as “documentation” for investigative purposes. Meanwhile, it’s apparently impossible to get a retraction without a lawyer.
    By the way, prior to my current troubles, I couldn’t get a reply from a political representative to save my life.
    So, in short, political representatives can help, but they may need to be able to see their political gain in order to be motivated to do so. Individual constituents matter very little to them.

  49. I would think the Governor of North Carolina would say to contact the North Carolina Insurance Commissioner.
    You should get the definition of “medically necessary” from your contract and post it here.

  50. This is s site that will make you weep. Be sure to have plenty of tissue on hand.
    I had never heard to this condition until my grand son was told that it was what he had. Petctus Carinatum
    It really breaks my heart to find out that so many American Children suffer with this. That there is not help for many uninsured children.
    I also wanted to let you all know that I have e-mail & e-mailed everyone that I could get an address for.
    I have not heard back from the Governor of New York.
    the Govenor of Carolina..says that it has too be dealt with in New York.
    I have sent posts to the Times, The Abc station in New York. I have not heard back.
    I have sent this information out to numerous tv stations and news shows. It is my understanding that CNN sent a person up to north carolina to get a copy of the tapes that wway3tv ran on Kevin.
    The tv station was our first success story and Then Matt & this healthblog is our second success. Then there are all of you that are posting.
    Thank you all once again for all your help..lets hope that Empire will reconsider..as I do not intend to give up untill they do. Then I am going to see what can be done to help those poor kids on the link listed above.
    I think I have found a calling.
    God Bless you All
    Grandma Dee
    I do have plans to see what I can do to help those children.
    This does make me tend to be ashamed that I live in America.
    Grandma Dee

  51. I got some action really fast by contacting Senator Bob Kerrey (D-NE) once for help with a client. It only took one letter from him and fur started fying and the company saw that they had made a mistake. Of course all the other politicians could have cared less, including the Governor. Kerry is just a good guy and his staff cared about citizens.
    I forget, who are the Senators in NC?

  52. Diane and Carla,
    I would also contact the media in Fayetteville, Raleigh, Durham, Greensboro, Winston-Salem, and Charlotte. This company is big and you can find many other large cities that they pull premium from.
    I would forget New York.
    I’m sure you have contacted the NC insurance commissioner but if you have not, you should.

  53. Whoa, suddenly I feel like I’m in 1992. I can’t believe they’re denying coverage for this service.

  54. Hello, my name is Carla and I am Kevin Dick’s mother. I wanted to share my story with you. We have noticed that kevin’s chest has almost always been different but we thought it was because he was so thin……until about a year ago when kevin’s chest really started growing and pretrouding outward. We started seeing him become more winded and just tired and unable to play his favorite sports like he used to. My husband and I also started noticing his asthma was harder to keep under control. Kevin was havign to take more medication and take prednisone (which is a type of steriod) more oftern. I scheduled an apointment with his pediatrition, that is when we found out kevin had pectus carinatum….a bone deformity that usually does not show up until the early teenage years. we were sent to a pediatric surgeon, doctor Don. Nakayama. chief of pediatric surgery at NHRMC. Doctor Nakayama confirmed that kevin did indeed have PC and was a good candidate for corrective surgery. WHAT A RELIEF!! to find out there was a way to repair our son’s chest! kevin went threw numerous test and gave blood on three occasions…which was not a pleasent expierence for him. Kevin’s surgery was scheduled for June, 2, 2005 right after school was out, so he could have the entire 3 months that is needed to recover for this surgery, without it affecting his upcoming school year. However 6 days before his surgery was supposed to take place. the insurance company (BCBS) informed us that they would not pay for kevin’s surgery. BCBS told us that this operation was not medically neccasary and was considered COSMETIC. OMG, WE WERE IN DISBELIEF! COSMETIC SURGERY!!! i thought, breast implants was cosmetic, tummy tuck is cosmetic, nose job/lipo…..BUT NOT PECTUS CARINATUM!!!! so, we have no choice but to fight for our son…my son deserves a healthy normal life…one full of sports, trips to the beach, and anything else he chooses. he is a loving, smart, caring, and funny kid who is the most important thing….he is not a BCBS case number!!!!

  55. June 15, 2005
    Surgeon Speaks out Against Empire Blue Cross Blue Shield
    Jun 15, 2005, 8:47 AM
    A Wilmington surgeon is speaking out after receiving another rejection notice from an insurance company concerning one of his patients. We first told you about this story on June 2, the day a local 15-year-old was supposed to have surgery to help him breathe correctly. But at the last minute, Empire Blue Cross Blue Shield refused to pay for the operation. They say the procedure to correct Kevin Dick’s chest deformity is merely cosmetic, and not medically necessary.
    Insurance watchdogs say Kevin’s situation is a compelling example of a much bigger problem: patients who can’t get the medical coverage they need, even when they’ve paid good money for health insurance.
    Kevin has a rare condition called Pectus Carinatum. Instead of lying flat, Kevin’s sternum sticks straight out of his chest. His doctors say it’s the reason Kevin can’t catch his breath. The good news is, it’s a problem that can be fixed. “My training and my experience states he will get significant benefit from the surgery,” explained Kevin’s physician, Dr. Don Nakayama. He has performed hundreds of surgeries on children like Kevin.
    Dr. Nakayama planned to operate on Kevin earlier this month, until a last minute rejection of coverage from Empire Blue Cross Blue Shield. Then, this week, they rejected Kevin’s appeal. Insurance executives say the professional opinion of two Wilmington physicians that Kevin needs surgery is irrelevant. Physicians that Blue Cross has hired, who have never seen Kevin, have come to their own conclusions. The company’s chief medical officer in New York, Dr. Alan Sokolow, says the surgery is merely cosmetic. “There is no physiologic abnormality that is being addressed, and that places it in the realm of non-covered surgery,” says Dr. Sokolow.
    But just looking at the pictures, some people disagree. Dr. Nakayama thinks the insurance company’s decision is a matter of dollars and cents. “The bottom line however, is that the less care that they fund, the more their profits,” he says.
    The insurance company has suggested a new, experimental procedure for Kevin, that would have him wear a brace for two years to correct the deformity. However, since the procedure is experimental, Empire Blue Cross Blue Shield won’t pay for it either.
    Kevin Dick’s parents are in talks with a Wilmington attorney, who has agreed to an interview with NewsChannel 3 later this week, once he’s thoroughly reviewed the case.

  56. Matt – my favorite thing about your blog is that you balance the hard statistics with trying to help real people. You rock. 🙂

  57. From my personal experience with online activism against Kaiser Permanente, the insurance company will take its cue from the media. Depending on the type of coverage, it will either respond by addressing the problem for PR purposes, or by attempting to discredit the critic as a disgruntled person with a grudge. It’s never about doing the right thing.

  58. This is a copy of the letter sent to the insruance company rom the Pee Dee clinic, wilimington.N.C
    To: Medical Management Appeals Department.
    I serve as the primary care physician for the Kevin Dick. As you are aware, Kevin is an almost 16 year boy who suffers from severe pectus carinatum, a congenital rib/cage deformity that typically worsens significantly durring the adolescant growth spurt. Kevin also suffers from from severe asthma for which he has been treated aggressively for many years. This is a clear contrubtory reationship between his various asthma complications and his chest wall deformity.
    Kevin was evaluated by Dr Nakayama at New Hanover Hospital and determined to be an ideal candidate for corrective surgery. This decision for Surgery in NOT predicated in any way on repairing a cosmetic effect. On the contrary! This ches wal deformity clearly restricts the child’s ablitiy to effectively expand his lungs and therefore adverserly affects his asthma and overall pulmonary status. Mr Tersini, This surgery is absolutely medically necessary and is not in any way advised for simple cosmesis. pulmonary function study and as assement of this child’s worsening clinical course ove the last few years provide and catergorical evidence of the medical necessity for this prodedure. Withou it,I believe that this young man remains at increased risk for servere pulmonary complications, includeing pnewmonia, ateltasis, pneumothoras, and bronchiectasis as a consequence of repeated and server astma exacerbtions.
    Please understant that it is imperative and medically necssary that your company promptly approve this corrective srugical procedure for this child.
    Dr Don Nakayama,M.D. Professor of Surgery Program Dierector, New Hanover Regional Medical Center. Wilimingotn, N.C.
    Just to let you all know that wway3tv in wilimington is trying to help. They have done intereviews twice and it can be seen on the net.
    I have created a blog for by grand son. (really am a novice in this department and It is learn as you go)
    I wish to thank everyone that is helping with this issue.
    I am try to take it from ghost(blog( stage to a real blog site found by every one. I would pray that every one who has the ablity to help me to get it found and read.
    My son has paid $1500.00 a quarter for the last 15 years. He belongs to the union and they are double thinking there particpation with this company in the future.
    Thank you
    Mattew and everyone that will help my blog to be found.
    Grandma Dee

  59. I’m suggesting that it would be better to pay this claim than losing tons of clients because of bad PR.
    How you can twist that into me celebrating other peoples’ suffering is beyond me. If you don’t want Matthew to discuss this poor child then you should tell him, not me. And for you to suggest that BCBS should not pay claims because it makes other peoples’ premiums go up is just wrong in my book.
    This has nothing to do with HSAs. If you want people to have problems just so you can step in a make a buck or two is very self centered. Now your motivation has become clear.
    Keep up your good work Matthew. Those that support BCBS over poor children usually have some professional interest. Lin please consider this poor child instead of your own financial interests.

  60. Intressting movement. Would hospitals take their own pr ‘care’ after this en would they take weblogs serious?

  61. Your atttitude makes me sick because your post celebrates other people’s suffering. Yes, let’s publicize this all over the place and cost BCBS a bundle, so their premiums will go up, or even better, they will go bankrupt. More HSAs for you! Yay!

  62. Pre-existing conditions is not the reason the claim was declined. You know that. You are in the industry.
    I notice you don’t agree it’s a pre-existing situation.
    Why not say it’s a UCR problem if you are going to be totally wrong? I’m sure you are not upset with me because I said that this is an excellent post.

  63. Sorry, free medicine direct. This claim is not being declined because of pre-existing conditions.
    This claim is being declined because of another reason.
    Wow Matthew, this is an excellent post. Empire could lose millions in lost premiums with bad PR.
    Keep up your good work.

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