Several days ago, Michi Lumin, one of the four founders of Luskwood and the one whom usually handles public relations, posted on Facebook that she had a very pressing problem, one that was causing misery for her in real life, and had the potential to be fatal.
In any case, this leads to constant, constant urticaria, which is the equivalent of 1000 mosquito bites plus poison ivy all over the body 24/7. And that's the "easy" part... (it isn't easy. at all.) Additionally, my case leads to angioedema (VERY painful swelling of the hands and possibly throat) and spontaneous anaphylaxis, which is a system shutdown and adrenal problem, which if untreated, is fatal within minutes. (I have to carry an ephinephrine injector. Even that only gives me 15-20 minutes to get to a hospital where likely a tracheotomy would have to be performed, and other steps to keep blood pressure from going to zero.)
For years of having people treat it as an "allergy" with no results (since it isn't one; I'm on 21 pills a day; 8 different quadrupled-dose of sedating antihistamines, a tricyclic H1/H2 blocker, plus heavy prednisone and Montelukast) - this basically keeps me from dead, but keeps me in constant pain and unable to do much. (Though I've been powering through work and life the most I can.)
I've been very frustrated trying to explain to friends that this is not 'the itchies and the sniffles", this is life and death, ER-type stuff, that feels like being stabbed with a million tiny hot swords 24/7 ON A GOOD DAY. On a bad day, you wonder if your airway is going to close up any second now for the last time. So please understand I am not selling drama here. ... This is hell. I can't sleep, I can't do normal things. But I'm still trying.
She went on to state last year a drug was finally approved for treatment. But there was a problem.
It's called Xolair. The problem is, it's expensive. My doctor told me "Oh don't worry, NOBODY pays out of pocket for Xolair. Nobody. They even have foundations that help patients who have trouble!! I've NEVER seen anyone pay out of pocket for it!" People who are uninsured are helped with something called the GATCF -- which I'm not eligible for because I am insured, and because I'm basically not poverty level.
After getting it prescribed last week, and submitted through the wonderful group of individuals (that was sarcasm) of [insurance company], ... they came back with a "firm denial." Apparently [insurance company] was "angry" about the issue that my doctor and even the drug manufacturer were pressing them. "The patient is paying retail", they said. "... That's unbelievable. You're the first person I've ever seen who hasn't been covered." my doctor says.
The problem is - that retail price is approximately $12,000 for 6 months, or $24,000 a year. No, that is not a mistake. Apparently about 0.5% of people, usually the wealthy, pay "retail" for drugs like these. .... And then there's me. (If I had no insurance, there's something called the GATCF, or the Genentech Access to Care Foundation, which pays for the drug. But since I have insurance, even though it doesn't cover it, and since I have a job, I'm not eligible.)
I have *no other options*, by the way, as there is *no other* long term treatment for those who don't respond to elevated H1/H2 blockers. Oh, there is actually. Cyclosporine. The same drug that people are put on to keep them from rejecting heart and lung transplants. It's so strong that it lowers your life expectancy drastically ...
Michi felt that all things considered, the insurance company would be paying less than one might first imagine.
... insurance companies don't pay retail. Only "people" pay retail. Their negotiated price for Xolair is around $4000-$6000. Knowing how big [insurance company] is, that number is probably more towards $4000. My deductible is $1000. Which means I'd have to pay at least that. Plus there's a $60 additional 'specialty drug' copay per treatment. 6 treatments, so another $360 they don't have to pay.
So, even if they did decide to cover it, they would be paying $2640. They're fighting to make me pay $12,000 for a 'rest of life quality issue', and possibly life and death, so that they can make $109,360 this year from our company's premiums instead of $112,000 this year from us. My other option I suppose is to just keep grinning through the constant incessant physical pain until anaphylaxis stops it real quick forever one day.
Michi requested that her situation not be used to fuel political debates about health care. "Lawyering up" wasn't really an option, she felt, as most would cost more than going ahead and paying for the drug full retail.
The reaction was a great deal of messages from her Facebook friends, a combination of expressions of sympathy with some requests for more information. One Alan Peer started a page on gofundme.com for the purpose of raising cash her here (to view, click here).
I contacted Michi, and her feelings about making her story wider known were mixed. The idea of being an object of pity she found repulsive, "I do feel bad that I haven't been around. ... I want to keep going, even though it's very tough for me." She did say the other Luskwood founders and Luskwood Core, as well as Trotsdale's staff were stepping in to help with the duties she usually did herself, "Trotsdale is helping with Luskwood and Luskwood is helping with Trotsdale (since I oversee both)... they've all been a good help..."
Her later Facebook posts were that the first treatments were on their way. It was just a question of how it would be paid for.
Just updating people that I'm going in for the first round of this stuff on Monday at 3pm, I'm nervous about it (it can cause anaphylaxis if it causes a 'reaction before it functions', but the chance isn't high - though I still have to be under observation while it happens, so I'll be at the hospital for a bit.) - and I am nervous about the billing but I'm talking to the drug manufacturer, too, as well as the insurance company still. "appeals and avenues in process." Fingers crossed. I don't want to be a center of attention, I don't know how to handle that -- but, I really appreciate the response and help....
This one 'test round' puts me at maximum risk of $2190, which while super-ultra-suck, is at least taking a bite of the elephant before eating the whole thing... Will try to update, but again, hate feeling like an attention..getter. thing. If it works, I'll have to make the call on the next 5 treatments.
Meanwhile, been tapering off the conventional drugs, so I feel a bit more awake at this time of day than I have in a little while, so that's good.
Stay tuned for more information as it becomes available.
Bixyl Shuftan
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