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Posted 2016-04-29T14:49:43Z

Potentially, tentatively, cautiously optimistically, VERY good news!

This is Jason doing the writing, not Jane. I am hijacking to deliver potentially, tentatively, cautiously optimistically, VERY good news!

Shannon got a call from the MDA Proton Center denial of claims coordinator. If I understood this right from Shannon (and she may want to clarify), after rejecting us a 2nd time on Friday, United Healthcare took it upon themselves to forward the case on to the third level of review. The third review, as now required by "Obamacare" has to be an 'external' agency. In this case, United apparently has arranged to use ERS, the organization who hires them to run our insurance program as the 'external' reviewer. In public accounting, that would be called 'self-review threat', and would be easily recognized as unethical, but I digress. In any case, apparently when the third review was sent, it was quickly turned around with a response to pay for proton therapy! The MDA lady said that she was called by the insurance company and that they had caved! We have NO IDEA yet what caused that effect. Shannon has written to ERS Board members, and that may be the cause. It could be that they liked our appeal letter, and found Shannon's financial argument persuasive. Who knows!?

This is fantastic news, obviously. But with all things bureaucratic, we have to believe it once we see it. Three days ago, Shannon signed a routing information slip so that money could be wired to us. Nothing so far, but we are still holding our breath.

There is a LOT that remains unknown. For example, we don't have any clear picture of the total bills to date that we may owe MDA. It seems possible that they will deduct those fees prior to reimbursement. We also do not actually know what the next treatment step will be when Shannon gets scanned on May 23, and if that will involve another round of very expensive...something or other.  Nor whether, if the insurance really pays for proton, they will pay for another round if required for her treatment. As you see, I am learning that in a medical crisis, even with very positive news, it just allows you to move on to the next onslaught of concerns! But for now, we are optimistic.

Because Shannon is Shannon, the first thing she said after telling me was, "Now we have to make sure that this wasn't just an exception for me. I want this to be policy. Email the attorney." So, yeah. There are lots of people without our resources, support and fortune who could not get this result. They do not deserve to have their brain irradiated and their cognition impaired permanently when there is a better treatment available for maybe 25% higher cost. As I have said many times, when body cells are irradiated and killed, they can grow back and tissues can recover. Neurons don't do that, so you just get collateral brain damage. Not fun. Especially tragic when that's clearly avoidable.

Our favorite patient is hopefully napping right now. Exhaustion has set in, although it doesn't keep her from struggling forward! 

One final note. The support of all of our friends, in so many different ways, has been...tear jerking. Yup. See? It happens instantly, as soon as I think about it for even a moment. Thank you all so much, even if you are just reading the blog and have not had a chance to say hello.

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Comments (12)

  • Barbie Chambers
    Barbie Chambers

    Love y'all so much and are hoping and praying for continued positive news on ALL fronts!

    10 years ago · Reply
  • Vivian Perez
    Vivian Perez

    Reading silently all your updates, not been able to imagine what you guys are going through, I am in tears right now, reading these news. What a relief! Credit goes to you guys for fighting with passion and intelligence. You guys rock, and I hope that it's just up all the way from now on.

    10 years ago · Reply
  • Kjetil Gjerdalen
    Kjetil Gjerdalen

    Wonderful and also much deserved news! You guys have really worked hard for this.

    10 years ago · Reply
  • Paul Rosen
    Paul Rosen

    I am so happy to hear this news! Hopefully it all works out. Either way, don't you dare return a penny of the money we donated - use it to defray other costs, donate it to a cause that will help other patients, or just use it to buy something nice for the kids (if you or Shannon feels guilty about it, consider it a repayment for any damages caused during drunken seders during grad school!)

    10 years ago · Reply
  • Bob McDonald
    Bob McDonald

    Great news indeed. What a weight lifted.

    10 years ago · Reply
  • Ann Rodriguez
    Ann Rodriguez

    Such wonderful news -- hoping for permanence with that decision!! The Rodriguez family has y'all in our hearts and prayers every day!

    10 years ago · Reply
  • Jule Gassenheimer
    Jule Gassenheimer

    Love you guys....One day at a time.....this made my day. I am so glad you get a break from this horrid routine.

    10 years ago · Reply
  • Eva Atkinson
    Eva Atkinson

    Managed care is why I felt ethically I had to leave hospital/medical systems that relied on insurance companies calling treatment moves that you would think be best left to healthcare experts. I hope this back-pedaling is for-real. I hope it lasts. I hope it continues. And I hope Shannon gets her wish for policy change that would provide equity in healthcare. Thank you for letting us know.

    10 years ago · Reply
  • Sherril Skibell
    Sherril Skibell

    I'm so happy to hear this news. I am thinking of you.

    10 years ago · Reply
  • Debbie Knam
    Debbie Knam

    Wonderful new Jason! So glad to hear it. Great job holding the insurance companies accountable. Love you guys!!

    10 years ago · Reply
  • Annette K. Bratcher
    Annette K. Bratcher

    very good news...love you all

    10 years ago · Reply
  • Michelle Duffy
    Michelle Duffy

    I was so excited to see this! Any bit of positive a long the way is something good. I also think it is downright impressive that in the midst of everything else, your family has had the presence of mind and focus and resilience to fight this.

    10 years ago · Reply