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Thread: Bureaucratic red tape for medical needs

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    Chronically sleep deprived RN_mom's Avatar
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    Bureaucratic red tape for medical needs

    So this is kind of a rant, but could potentially be a debate.

    So, quick back story. M is one of our techs in the ER. A good friend of mine. She and B have known each other their whole lives practically, but always as friends. Last year they got romantically involved. They are together about three months and they wake up one morning and B is completely altered. Not himself at all. She rushes him to the hospital, and a thousand tests and a transfer later, they learn he has multiple myeloma.

    He has been going to chemo, but it stopped working. Next step is an autologous bone marrow transplant. It's considered elective. B has been denied twice now for disability and thusly Medicare/Medicaid. He gets a third try at it, but the appeal could take months. He doesn't have that. Meanwhile, since its "elective", the hospital needs all 30 grand up front to do it.

    This is getting ridiculous. At best he has 5 months untreated. If the transplant takes, he could get 10-20 years. How is that considered elective? Why isn't multiple myeloma on the automatic approval list with the other bone cancers? Evidently part of the problem with it is that only 1% are under the age of 65ish, so most just take retirement.

    It's frustrating because I see people every day working the system. I see 20something year olds on disability every day for THE most ridiculous reasons. And this man is dying and can't get it. What the fuck is wrong with our system? How did we get so damned broken?!


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    ••••••••••••• niccikatie's Avatar
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    Quote Originally Posted by RN_mom View Post
    So this is kind of a rant, but could potentially be a debate.

    So, quick back story. M is one of our techs in the ER. A good friend of mine. She and B have known each other their whole lives practically, but always as friends. Last year they got romantically involved. They are together about three months and they wake up one morning and B is completely altered. Not himself at all. She rushes him to the hospital, and a thousand tests and a transfer later, they learn he has multiple myeloma.

    He has been going to chemo, but it stopped working. Next step is an autologous bone marrow transplant. It's considered elective. B has been denied twice now for disability and thusly Medicare/Medicaid. He gets a third try at it, but the appeal could take months. He doesn't have that. Meanwhile, since its "elective", the hospital needs all 30 grand up front to do it.

    This is getting ridiculous. At best he has 5 months untreated. If the transplant takes, he could get 10-20 years. How is that considered elective? Why isn't multiple myeloma on the automatic approval list with the other bone cancers? Evidently part of the problem with it is that only 1% are under the age of 65ish, so most just take retirement.

    It's frustrating because I see people every day working the system. I see 20something year olds on disability every day for THE most ridiculous reasons. And this man is dying and can't get it. What the fuck is wrong with our system? How did we get so damned broken?!
    So, my Dad has multiple myeloma and we've been through quite a bit of wrangling with insurances since diagnosis. My "favorite" had to be when his Boniva was denied because he wasn't in menopause. He's 4 years out from his stem cell transplant (fun fact, he had a syngeneic transplant from his identical twin). The myeloma and subsequent illnesses have ravaged his body, honestly. He was also younger than 65 at diagnosis - it took many months to get his diagnosis partly because of his age. It sounds like your friend's is pretty aggressive, too.

    Is he being treated at an academic medical center? With oncologists who are very experienced in this? If so, I'm surprised they're not more successful with the appeals - we found our team to be pretty savvy about what was needed to meet insurance requirements. I'm also surprised they're considering it elective once he's failed chemo. Typically it's not considered elective past that point. There are many chemo options nowadays for MM - how many has he tried? It took two different regimens to find the one that worked for my Dad. He still takes it in 21 day cycles. I would strongly recommend a second opinion on this. MM can be tricky to get under control even after the transplant.

    All that said, it is terrible to navigate our healthcare system. I dread the day Dad switches to Medicare because they do not cover the chemo he takes. My parents will likely have to pay out of pocket for the medication that keeps him alive to the tune of five figures/month. Yes, there are covered regimens, but it would really suck to have to try and find a new regimen. What if he ends up with a resurgence? You can't use coupons from pharmaceutical companies while on Medicare, either.

    I'll keep your friend in my thoughts!

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    Chronically sleep deprived RN_mom's Avatar
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    I believe his is fairly aggressive, but the bigger issue is how long he'd had it before any diagnosis. He is an independent contractor long haul truck driver. So he didn't have insurance and ignored his earlier symptoms. They were fairly subtle or could be mistaken for less dangerous causes. Like chronic back pain from driving a truck. By the time he was diagnosed, he nearly died from hypercalcemia. It was bad

    He is at an academic medical center. He's being treated at university of Virginia. I think the issue is that he didn't have insurance beforehand. So there's nothing to navigate except the disability, which is the only way he can get Medicaid/care in va. They looked at trying to just sign up on the market place, but because he got sick in October, his income level from last year makes it so that his insurance would be $1650.00 a month. And he would have to wait a year for the transplant to be covered.

    She's gotten our congressman and senator involved. Thankfully they seemed to be appalled by the whole thing and interested in helping. I can only hope they do.


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    Sitting on the couch eating bon bons! Eli's Avatar
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    When FIL became disabled after working everyday of his life, the hoops he had to jump through to get coverage was ridiculous. As someone with a chronic lifelong illness that has affected my ability to work, I am scared. Our health care system sucks.



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    Premier Sponsor Jasmine's Avatar
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    It is a major indication of a very sick society. We consider something like streets and sanitation to be a taxpayer service, but not the medical care that can save human lives. Pony up or die. Mercy and human compassion? Sorry, not good for business!
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    Wishes reality was like comic books tpatt100's Avatar
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    I have a relative that has been on disability forever, she spends winters in Florida then comes back here during the spring and summer. At family get togethers she's always high on her medical marijuana and posting drunk pics on Facebook.
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    Chronically sleep deprived RN_mom's Avatar
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    I am in tears...my friend got a letter today that Tim Kaine managed to rattle enough cages to get the approval through. He now has his disability and, more importantly, insurance to have his potentially life saving procedure.


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    Shrieking Violet Sprockey's Avatar
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    That's awesome

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    Where the flowers bloom Andee's Avatar
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    great update!

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    Full Sponsor TapToTalk's Avatar
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    Quote Originally Posted by RN_mom View Post
    Next step is an autologous bone marrow transplant. It's considered elective. B has been denied twice now for disability and thusly Medicare/Medicaid.
    I'm not sure I understand. Who is saying it's elective? Who's denying disability? Confused.

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