Feb 04

Introducing: Imbruvica

2-4-2014 – Well, it’s been just about a month since my last update, so here I am again.

For the past several months, my mom and I have made a trip to Detroit to visit the Karmanos Cancer Center to participate in a Clinical Trial Drug Study of a new drug called Ibrutinib.  Recently, that drug was approved by the FDA and went commercial, to the tune of $10,000.00 per month, according to what I was told by the folks at Karmanos.

Now that the Clinical Trial I was participating in is over, I no longer have a need to go to Karmanos every month to get examined and get another (free) month’s supply of the drug, so this is the first time in quite a long time that we didn’t make that trip from where we live in the cold, COLD, DEEP SNOW of Northern Michigan.  I was glad not to.

There was some question about whether we’d have to make the trip or not however, and I had an appointment with Karmanos for this past Monday, just in case.  We made it last month when we were there, just in case the now-commercialized drug wasn’t available to me yet where I live.  The $10,000.00 per month price tag put a pretty big question about that in my mind, though none of the health care professionals I’d been working with seemed at all concerned or doubtful that it would all work out okay.

They were right.  Everything DID work out okay.  Patient advocates for Johnson and Johnson had me fill out some paperwork that I downloaded from a website and submit it to my local Oncologist, who then passed it along to the financial person in her office for some more filling in the blanks, and a few days later I was approved to get the drug at no cost to me.  It ships directly to me each month via FedEx, and the first shipment arrived on Monday, no fuss, no muss.

Here are some photos of it.  It arrived in this scary looking bag within the bubble-padded FedEx envelope:
Imbruvica-6047Here’s a better look at that bag:
Imbruvica-6049Inside the bag was this box with detailed instructions for how to take it, which didn’t change from the past several months.  The only real change noticeable at this point is the name.  During the Clinical Trials, it was Ibrutinib, which is the actual name of the active ingredient, and now it’s Imbruvica, which is the brand name.  In Parenthesis under the brand name, it still shows the name of the active ingredient as Ibrutinib:

Imbruvica-6050On the side of the box is another scary label in bright yellow:
Imbruvica-6053Inside the box is the actual pill bottle:

Imbruvica-6058And on the side of the bottle, I found it interesting to note that it says, “Active ingredient Made in China”:
Imbruvica-6056I don’t have any problem with that, but it’s interesting to me because China is known for producing and shipping products very inexpensively, and I was told that each of these little bottles of pills goes for $10,000.00, so it’s just kind of amazing to me to think about that.

The only other change that I can see is that the original capsules were gray, and these are white, with a little black printing on the side of them: “ibr 140 mg”

In any case, I was told by the person who phoned me to get details for shipping to me that I’d been approved for a year, and that I’d get a form at the end of the year to fill out for the following year, and so on.  Sounds good to me!

I had to sign when I received them from FedEx, which was expected, as the lady I talked to on the phone about the delivery warned me that I would be the ONLY one who COULD sign to receive them.  Inside the package along with the pills, there was also a form for me to sign and send back in a self-addressed postage prepaid envelope, and instructions to do so within a certain time frame or they wouldn’t send any more of the drug.  I promptly filled it out and went straight to the post office and mailed it in.

Today, I got another couple of forms in the mail from them to fill out and send in the same way, but these are consent and drug allergy notification forms.  No problem, and I’ll have them back out in the mail later today.

I had a visit with my local Oncologist, Dr. Bolmer, about the middle of last week.  I really like talking with her and working with her, so we had a nice visit.  She did the regular exam and then we talked about the Ibrutinib / Imbruvica, health insurance, and that sort of thing, and then she led me down the hall to the financial services person, who took it from there to help me.

The financial services lady needed some sort of documentation on my income, so the next day, I made a stop at the Social Security Administration Office in Petoskey to get a copy of that.  I was pleasantly surprised to find that I’d gotten a $30 per month raise.  I took the document straight to the financial services lady, who made a copy of it for me to take home, and that took care of both our needs to get the information needed to the drug company so they could review for possible approval.

My year of taking Acyclovir after my stem cell transplant is now over.  I took the last of them last night, so there’s two less alarms and pills every day to have to deal with.

I’m still struggling with insurance issues.  Back at the end of November, I went to the ACA’s Health Care Exchange website to sign up for Obamacare, and ran into some difficulty.  It told me that I needed to provide “Official release papers from institution” that I was no longer incarcerated and, “If you do not provide documentation by the following date, your elligibility (sic) for health coverage may end: March 12, 2014”.  The problem is that I don’t have such a document because I’m not now, nor have I been, incarcerated.

Since then, I’ve made several phone calls to the Health Care Exchange and spent literally hours on the phone with very nice people eager to help, who haven’t got a CLUE HOW to ACTUALLY help resolve the problem.  Suggestions they pulled out of their asses have included:

  • Delete your application and do it again from scratch and see if that fixes it.
  • The problem has been escalated, and a “Resolution Specialist” will call you and fix the problem.  (Got told this one twice, but nobody ever called, and nothing got fixed)
  • Go to one of those places that runs background checks on people, pay them to do that on you, then pay to have it notarized and send it in, in place of the document asked for, and see if that works.
  • Go to the police and have them run a background check on you, then have them write up a document that you’re not incarcerated nor should be (not on the run), then take that document and pay someone to notarize it and send it in, in place of the document asked for, and see if that works.
  • Hire a lawyer to draw up a document stating that you’re not incarcerated and then pay someone to notarize it and send it in, in place of the document asked for, and see if that works.

Well, I deleted and redid the application, and got the same result along with the same problem.  When I went to the police, they ran my drivers’ license, then they called the Health Care Exchange and talked to one of the representatives there and explained that I’m certainly not incarcerated and shouldn’t be (not on the run), but that they don’t have a document to fill out that would cover this situation, and don’t just write up documents from scratch like that (probably legal and privacy issues and concerns involved), and basically laughed at the very idea of the whole thing.  They put me on the phone and I answered questions, then they had me put the cops back on the phone, and we did that a couple times.  In the end I was, again, left empty handed.

Finally, I simply gave up.  I called the Health Care Exchange again this morning, got a supervisor on the phone, and explained the situation one last time.  She began to suggest that I write up a document and take it to someone to have it notarized… and I stopped her right there with an EMPHATIC, “NO, NO, NO, NO, NO, NO, NOOOOO!!!!!!!  I’m NOT doing that!  I’m NOT jumping through any more hoops for you people!  I’ve been trying to get this resolved since November, my frustration levels with it all are amped WAY UP, and I’m OVER IT!  SOMEBODY, SOMEWHERE in the US Government has the ability and the authorization to reach into that database and uncheck a box or write in an explanation that makes this all go away.  The US Government obviously HAS the information SOMEWHERE that I am definitely NOT and never HAVE BEEN incarcerated, and they need to pull that information out of wherever it is and FIX THIS.  If that CAN’T happen, then I’m done with this circus entirely, and I want nothing more to do with it!!!!”

With that, she suggested that she could delete the whole thing, and had nothing else to offer.  So I told her to go ahead and delete it.  A moment later, she said she had, and asked if there was anything else she could do for me.  I resisted an evil urge to tell her what I was thinking at that point.

And with that, I washed my hands of it all and walked away from the ACA’s Healthcare.gov website and the Health Care Exchange, at least for now, which was really difficult for me.  Those who know me understand that I’m one of the most politically liberal people you could ever meet, and I’m all for the ACA being a success, and a first step toward a much better health coverage plan known as Single-Payer.  But my experience with it over the past 2+ months was a total let-down, very frustrating, and the sort of story I’d expect to see on a Right-wing website or Fox Propaganda News or something.

I suppose I’ll just have to deal with Medicaid until October, when I’m eligible for Medicare, and then I’ll deal with that.

It’s always the same, from my point of view: Anything at all to do with medical insurance is the biggest money-making scam ever, and a huge pain in my ass, to boot.  When I’m king of the planet, health insurance companies are going to be the first to go, and we’re putting everyone on a Single-Payer system – the end.  Anybody who doesn’t like it can move to Libertarian-Paradise Somalia, and we’ll be happy to provide the transport ships.

So, I guess that’s about all there is for now.  All in all, things are going pretty well for me.  I’m still in remission here as far as anyone can tell, I’m getting my special chemo meds post-Clinical Trials without having to jump through any fiery hoops to pay for them, and I’m feeling pretty good, all in all.

See you next time!!