• Petitioned Blue Cross Blue Shield of Massachusetts - Andrew Dreyfus
  • Responded

This petition was delivered to:

CEO
Blue Cross Blue Shield of Massachusetts - Andrew Dreyfus
President of Northeastern University
Joesph Aoun
President of Northeastern University
Joseph Aoun
MA Attorney General
Martha Coakley
Team 5 Investigates ABC 5 Boston
WCVB Investigates
I-Team Investigates WBZ Boston
CBS I-Team Investigates
WFSB CT
WFSB 'On Your Side' Investigation Team
Fox CT - CTnow.com
FOX 25 Investigates
See response
BCBSMA Grievances
Blue Cross Blue Shield of Massachusetts Grievances
Massachusetts-08
Rep. Stephen Lynch
Massachusetts-138
State Rep. Jeffrey Sanchez
Massachusetts-002
State Sen. Sonia Chang-Díaz
Massachusetts-030
State Sen. Michael Rush

Blue Cross Blue Shield of Massachusetts: Save Alan's back by approving a critical emergency surgery - What will they deny when you need help?

    1. Alan Gordon
    2. Petition by

      Alan Gordon

      Boston, MA

  1.  
  2.   
May 2013

Victory

Alan Gordon: After an intense two days of campaigning on Change.Org, Twitter, Facebook, Blogs, and word of mouth... Your calls, your signatures... everything helped! We just received the authorization for the implant. YES! That means coverage for the Pro-Disc-C implant was APPROVED after all the work everyone has put in. I am greatly and eternally in debt to all of you who have helped make this happen. As promised, we won't stop here: I have my victory but so many others do not have theirs. No, not BCBSMA specifically: they deserve a break (and their twitter feed back. (-:). We just want to see a healthcare system where a patient's own doctor is the one who makes the important decisions, not the insurance companies. Thank you again. This has been an amazing experience for both Alaina and myself and we couldn't have done it without you.

Thank you for your comments and signatures! As you can see, many others who have gotten the bone fusion surgery are posting about how it has negatively impacted their lives. I just spoke with Blue Cross who said they are making a decision today - please continue to sign and let them know you do not agree with a denial.  Also, if you feel like making a phone call you can reach their grievances line at 617-246-3605 and dial #2 when prompted.

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Transcript of Appeal Video:

 

"My name is Alaina and I am here to tell you a bit about my amazing fiancée, Alan Gordon.  I met Alan seven years ago through friends, and since our first date – taking a moonlight stroll through the Fens and catching a movie at Landmark Center – we have basically been inseparable. The lengths he will go to in order to help friends and strangers are nothing like I’ve ever seen before.  I have watched him lead disoriented hikers off mountains in the middle of the night and back to safety.  I have watched him rush to the aid of strangers at the beach or even along the streets of Boston and the backwoods of Maine.  He has driven hours in the middle of the night just to come to the aid of his sister, who suffers from MS, or to get to me when we were apart and I was suffering from my own illnesses.  He has taught children and teens about nature, science and technology – and has shown that same enthusiasm when teaching elders about it as well.  He worked as an EMT for a time, and was even training to become a volunteer Firefighter when an ear injury stopped that in his tracks.  Now Alan has been studying and saving up for medical school, so he can become a psychiatrist and help veterans and their families deal with the trauma and stress of war.  His whole life has been devoted to helping people, and now he needs our help.

This past December, Alan asked me to marry him. He saved up for a long time to get me the ring and surprised me with it while we were on our first trip to Florida together.  We excitedly began to plan, and were hoping for a wedding on Columbus Day Weekend 2013.  This weekend was special for us, as we had always been avid hikers and campers and would generally spend that weekend with friends up in the Presidentials of New Hampshire.  However, over the past few years he was in more and more pain – and never wanted to let on about it to anyone.  Finally, when we returned from Florida, he made an appointment.  What were told was not good: his cervical spine was being compressed by a herniated disc and, if he were 20-30 years older, surgery would be done immediately.  However, due to his age – only 27 years old – it was advised against as this surgery would result in loss of motion and the continued need for bone fusion every 5-10 years as the additional discs began to wear.

I know of this all too well.  Over ten years ago now, my father Demetri – once so vibrant and full of life that you couldn’t stop him, someone who also put everyone else before himself – found out he had the same issue with discs in his back.  At the time, the bone fusion was the only thing available, and after physical therapy did not work he was taken in for surgery.  They opened him up, removed all of his organs – placing intestines on a table next to him – and fused the bones with those of cadavers.  They put in titanium screws – 7 of them – and he spent many painful days in recovery in the hospital.  When he was finally released, it took him two months to heal but we were optimistic – despite his protests that, had he known the pain he’d be in, he would have never done the surgery.  While it appeared to work for a few years, the pain came back worse than ever.  It turned out the discs in his neck – the same ones Alan is now dealing with – also required the painful fusion.  He stayed in the hospital longer than he originally was told, and the pain never went away.  The bones never fused properly, and the metal plate they put in was rubbing against his vocal cords.   Due to the amount of scar tissue that surrounded the plates and screws, he is now unable to get that surgery fixed.  Physical therapy and medication do not help, and it is lucky for the days when he can actually stand up and walk around.  Since I was a little girl, he always dreamt of playing the bouzouki and dancing at my wedding – now both of those truly seem like a dream.

Alan is facing this same surgery – the same surgery my father had, and that so many others writing in to us have had and regretted.  My father now has bone spurs running up and down his spine between both fusion areas and it makes life a living hell that not even pain medication will fix.  The numbness, the tingling, and all that comes with it just adds to the misery.  I do not want this for Alan.  Not when he is so young.

Several surgeons have advised he is too young for this and should try everything to avoid the surgery.  However, should he wait any longer he runs the risk of permanent damage to his spine and becoming paralyzed.  His nerves are compressed about 30% and he can barely write or even talk on the phone without dropping it from the pain and numbness.  He can no longer ski – his favorite pastime. He can no longer hike.  He even missed his psychology graduation and full graduation at Northeastern University as half of his body went numb while driving there. Driving in the middle of Boston and almost losing control – but the scarier part was the “snap” he felt when that numbness began.  One emergency MRI and rushed appointment later, he was told surgery could no longer wait.  However, the insurance company he has to have now is Blue Cross Blue Shield of Massachusetts and they will not cover the implant he needs to avoid this.  Yes, there is now a surgery that can be done with a metal implant – not a fused bone – called Pro-Disc C, which will help alleviate the strain on the additional discs.  Had this been available for my father, he would have jumped at the chance.  They will only cover the bone fusion, as the part (bone vs. implant) is cheaper by about $2000 even though the hospital stay and recovery time will cost them more than with the implant. 

The health insurance we had before, United Healthcare, would have covered it – as would many other Blue Crosses across the country – but I lost that health insurance when I had to leave my own job due to my own poor health.  Alan cannot work right now due to the pain, let alone study for his entrance exams for his next round of school, and I am so afraid that if he does not get this implant he will be doomed to a life like my father has – where there are only a few times a week that he can actually get out of his chair due to the intense pain he has suffered.  He only has this health insurance because it is what Northeastern University offers, and Blue Cross does not want to budge.  They even told him to just go ahead with the surgery and let them decide if or not to cover it after the fact – a cost which would run him between $35,000 and $65,000 out of pocket.  This is money we had been saving for our house and our wedding, but would obviously gladly put it toward his back – but that shouldn’t be necessary. He has paid for his insurance, and should get the best possible solution – not a stall tactic that will just result in him asking some other insurance company down the line to pay for the additional care, medication, and surgeries he will require.

So please give Alan back his life and his future.  If we can get them to overturn their denial for him, there is hope other denials will be overturned as well.  No one deserves this kind of life.  Please consider signing our petition at Change.Org.  You can also follow along at thetaleofalan on Twitter.  #SaveAlansBack so he can dance at our wedding.  So he can have a chance to play with our future children, and not be confined in pain like my father currently is.

Thank you for your time."

 

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This petition has started to take a life of its own and once there is a victory against Blue Cross of MA, I plan on expanding and continuing it until there is policy reform that enables a patient's own doctor to make necessary medical decisions. Not businessmen, or investors. While we recognize that corporations have the right to a profit (and yes, even non-profits make money or else their higher-up employees wouldn't be paid the amount they are), the people who's lives they impact should come first and foremost.  ~A

These are the other companies which cover the surgery: http://sites.synthes.com/na/prodisc/Patients/WorkingWithYourInsurer/Pages/Are-you-covered.aspx

Other surgeons have said I am too young for the bone fusion which will be the only option I will have if this is not approved. While that will fix the issue enough so I will not be in fear of my disc going through my spine, it will result in a longer recovery time in and out of the hospital as well as multiple surgeries.  Let BCBSMA know you support this - if they do not change their policies, why would anyone want to continue to use them?  What procedure will you be denied next?

Follow the progress on Twitter: @TheTaleofAlan or the blog-feed at MyOutdoorNetworks

 

A Big Thanks to http://www.sickofbluecross.com/ for the original cover image

New image courtesy of my spine and coolidge corner imaging

Recent signatures

    News

    1. Peyton Manning's Spinal Fusion: What Happens To Discs After Fusion

      Alan Gordon
      Petition Organizer

      I've been told Peyton Manning had the spinal fusion and was able to play again. Okay - but I had no idea he had more than one surgery!

      One of the articles (http://news.medill.northwestern.edu/chicago/news.aspx?id=199809) had this quote (by Shaeffer Bannigan, development engineer):
      “When you get one level fused, the next level up and down has to take all the motion. This very often accelerates into adjacent level dysfunction. That can happen two years later, that can happen 10 years later."

      Meanwhile, this is the conclusion to a study on Total Disc Replacement with Pro-Disc-C (http://www.ncbi.nlm.nih.gov/pubmed/23080427):
      "ProDisc-C patients maintained motion at the index level and had significantly less neck pain intensity and frequency as well as a lower probability of secondary surgery."

      Which surgery would you choose?

    2. Updated Petition with Transcript of Appeal Video

      Alan Gordon
      Petition Organizer

      We were told we'd get a decision today - and my surgery was tentatively pushed back because of it - yet we never got a response. I am NOT giving up - we're are starting appeals with the state (Massachusetts) and have received so much support and materials from the manufacturer to submit with it. We are going to take a much needed break tonight from doing all of this, but first I wanted to get the transcript out of the appeal video my fiancee posted earlier today.

      Thank you for all of your support with this. It truly means a lot. We started this petition yesterday morning and already have over 220 signatures just a day and a half later! Amazing! (-: I seriously cannot thank you enough.

      Cheers,
      ~Alan

    3. Reached 200 signatures
    4. Decision-maker FOX 25 Investigates responds:

      FOX 25 Investigates

      Hi Alaina/Alan,

      Please email me at bjberman@ctnow.com so I can discuss this with you.
      Thanks,

      Beau


    5. Reached 100 signatures

    Supporters

    Reasons for signing

    • Amy Ruggiero WEST HAVEN, CT
      • about 1 year ago

      He is need of this surgery. Please help him.

      REPORT THIS COMMENT:
    • Sasha Frenkel BOSTON, MA
      • about 1 year ago

      Everyone deserves a chance to be happy without having to deal with their pain at the same time...

      REPORT THIS COMMENT:
    • Mira Kamdar PARIS, FRANCE
      • about 1 year ago

      I don't understand why a procedure recommended by the patient's primary-care physician, which is less invasive and less expensive is not approved in favor of a more expensive and more invasive procedure. This makes no sense! Patients and their doctors should together make these decisions, not insurance administrators. The procedure approved sounds like a terrible option that will potentially create more suffering and incapacity than it will alleviate. Please allow this patient the care his doctor and his family believe is best.

      REPORT THIS COMMENT:
    • Janice Pielert STAMFORD, CT
      • about 1 year ago

      Because I have undergone extensive spinal surgery myself and know how painful it can be.

      REPORT THIS COMMENT:
    • Harvey Druker BETHEL, CT
      • about 1 year ago

      Because it is the right thing to do and because it saves money and provides long term benefit where other procedures are more costly and less effective.

      REPORT THIS COMMENT:

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