Saturday, October 2, 2010

Taking a deep breath...

Ok, so the issue of cost of Gilenya has been weighing heavily on my mind for as long as I have been having such great results. I knew it wouldn't be as cheap as say my Estradiol (which I get for $17.99/mo) but was never expecting $48000/year as mentioned in my previous blog entry, either.

Thank goodness someone is thinking straight and had the presence of mind to call Novartis and try to get the info straight from the horse's mouth. The Queen put her foot down (see profile pic at link) and demanded to know the one true answer. Here's the queen's comment from the last post (in case you don't want to bother with all that clicking and scrolling):

I read a little more on this today [regarding the topic of my last post], and the person giving the info has no relationship with Novartis, he's just a stock market analyst commenting on stock. He says Novartis could charge as much as $40,000. Well, they could. Doesn't mean they will. I called the Gilena line and the woman there said two things: 1)she couldn't give me the exact price and 2) she suggested Novartis has a very generous assistance program if I couldn't afford it. I started to laugh and asked,"Do you know of anyone who could afford to pay over $100 PER PILL?" and she laughed. I was encouraged after I spoke with her.

I suppose that's why she's The Queen, taking that logical, level headed approach and all. Thanks for calming me down.

So, here's my plan. I got a link in a Google Alerts email I have set up, and found that Novartis has launched a brand spanking new website for their baby: .

I signed up to be updated on new information and to allow them to contact me. During the sign up process, one of the questions asked was about the current therapy I was on. One of the choices was Gilenya. They then asked how long I had been on it, giving me several choices to choose from -- 3-4years being among them.

This tells me that they are interested in contacting us lab rats and getting our input on our personal experience. I found that interesting. If they call I may just direct them here and tell them to start from the beginning. Make them work for the info. Muahahahahaha.

Also at their website is a pdf of the:

GILENYA™ (je-LEN-yah)

Here's the link:

I just noticed, while reading what I have copied/pasted above, that once again I have already been mispronouncing a medication name.  "je-LEN-yah" sounds even stupider than the "gill-EEN-yah" I had been saying. Oh well, maybe that's Swiss for "cure". Hopefully not for "suck you dry of all you money and worldly possessions."

There is a phone number, address and email listed to contact them regarding je-LEEN-yah and without further ado, here they are:

1-888-NOW-NOVA (1-888-669-6682)
Monday - Friday, 8:30am - 5:00pm EST

Customer Interaction Center
Novartis Pharmaceuticals Corporation
One Health Plaza
East Hanover, NJ 07936-1080

Email (actually a contact form):

I plan on calling them Monday to pick their brains and see who I need to kneel before and beg for free medication for all of the test subjects (and here's the kicker) REGARDLESS of income or insurance coverage.

I have heard stories among the various trial participants of some of us getting reimbursed travel money for getting to testing sites. Not only have I NOT gotten reimbursed, I have been billed many times over for tests performed as part of this study, with the ophthalmology department being the most consistently guilty of this practice.

I know I read the informed consent and agreed to their terms that I would not reap any benefits beyond the possible health benefits due to the medication, but I'm talking about the morality and compassion of the issue here.

I think congress needs to be lobbied on behalf of clinical trial patients everywhere to make it a law that if a medication gains FDA approval those who risked their lives in the name of medical advances should be granted free access for life to that medication regardless of their financial status or insurance coverage.

If this were law, you might even find that the attraction of joining a trial would increase and there would be even more test subjects available to expedite the advancement of future medications.

I don't know how to go about lobbying for this, and maybe there aren't that many folks who agree with me or would be as passionate on the subject, but there MUST be someone out there who either knows, or knows someone who knows, how to go about turning this into one of those made for TV movies based on a real life drama and get the action needed to see this as more than a pipe dream (or pipeLINE dream, get it?) and have it be reality.

I truly believe everyone has a purpose in life. Our mission is to discover it and see it through. Maybe I have finally found my calling. Anyone with me on this?

Here is a formal call out to anyone out there who knows how to get started on this. Please leave a comment with your thoughts and any info that could point me in the right direction. In the meantime I'll go google how to get a law passed. I knew I should have paid more attention in Political Science class.


  1. Oh, weird! The Opthamolgy dept at my center was the one demanding the payment.

  2. Jeri, while I think your idea is wonderful in theory, I don't believe is has a place in reality. Free meds for life - especially if lab rats know upon entry they will be rewarded in this way - I think opens an big, ugly can of worms, and some unpleasantness for the lab rats.

    There is no doubt in my mind the IRS would tax us on the value of the meds as earned income.

    What if the FDA decided lab rats would have to pass criminal and background checks prior to acceptance into a study? Who'd pay for that - the drug company? They'd love that, I'm sure. That'd cost them a whole lotta money on top of an already very expensive process. And who'd keep those records? I personally don't want the FDA that far up my butt. The IRS is bad enough.

    What if, in an effort to slow down the approval process, a competing company were to formally question the results by claiming some malfeasance (I love that word) in of a particular center's data reporting? All the lab rats attached to that location would have to be part of any investigation. That could take years and, again, to many people trying to get up my butt.

    This is what I propose: lab rats who need to can apply for prescription assistance. But they (we) should be assured of the best assistance plan the drug company has available. I'd even be fine with reapplying every 3-5 years. But really, if I won a big lottery or something, I'd gladly start paying my fair share.

    P.S. The Dermatologist and the Pulmonary lab usually try to collect from me. Apparently my study center is an exceptionally slow pay.

  3. Sigh. Another voice of reason speaking up. I know, I know...

    If I won the lottery I think I, too, would gladly fork over the dough for the meds. It just seems like such a scary thing to think of facing the whole application process, possibility of denial, and fear of what will happen if I get off the meds. I went through it with Copaxone and it was very stressful.

    The fact that we have moved in with family and are renting out the house to avoid foreclosure has left me totally stressed out and uptight about what will happen when I'm not handed my 3 pill bottles at no cost.

    Besides, a law like that would never get passed anyhow. Big pharma has too much of a stake in it and all the money to fight it.

  4. Holy. God. Clinical trial nurse just responded to my email with:
    "It IS $48,000 a year. For you being a study patient, you will have financial assistance. Don't worry."

  5. I was SO sure that i would be one of the lucky ones whose insurance would pay for gilenya. It does cover avonex; i only pay $20/month for that. But today i found out that it's not covered at ALL by my insurance company, at least in the plan i have thru my employer. I read today that novartis is saying they'll give non-medicare patients $800 per month to help out, but that still leaves $3200. i really can't believe it. I had finally decided that i'm up for the risks and was going to switch.

  6. well, we'll see if it's true, but a different rep at my insurance company (and my work HR person) say i AM covered for gilenya (with only a $20 copay). Part of me is ecstatic, but part of me is terrified of the possible side effects if I do switch.

    I'll have to undergo an EKG, dermatologic exam, eye exam,and blood tests before i switch, so I can be monitored for the possible side effects reported.

    Again, whether or not i switch, i'm so impressed by and grateful to those who participated in the clinical trials.


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