Paying for Pulmozyme

[abloedel]

Hi all - it's me, Amy, 36, who was just diagnosed with CF a week ago. My CF doc prescribed pulmozyme 2x a day....I just checked on my insurance website and it's not a covered drug. I understand this costs something like $1000 a month??? Is that true? How do you all pay for your pulmozyme treatments?

Put me back on oral antibitiocs (Levaquin) too - as my cough is getting bad again. X-Ray shows some infection, but no pneumonia at this time. Said if I'm not better in a few days, they'll put me back on IV antibiotics :-( - but at least they'll just give me another PICC line and I won't have to go into the hospital again.

So far, my last culture only grew staph - no cepacia or psedomonas - gave them a new one today so we'll see what grows out of that one.

Thanks for any help, suggestions, etc. on the Pulmozyme.

Amy
36 w/CF

 

[anonymous]

what insurance do you have? It probably isn't in the formulary plan so they are saying it isn't covered...however, there aren't any other drugs that will do the same thing. All I can say is FIGHT it all the way...they will eventually pay for it. Have your CF clinic write a letter to your insurance company explaining the benefits. Hope this helps!<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Genentech, the company that makes Pulmozyme has an Endowment Program to assist CF's in paying for Pulmozyme.
You can call them at 1-800-297-5557 to get some details.
I used their "vouchers" to pay for a big part of the portion that my insurance company didn't cover and that helped.
Also, I ordered from the CF Services Pharmacy and they shipped it right to my door, and billed my insurance company. I then made payments to CF Services Pharmacy for any remaining balance. I am not at a place right now w/ the phone number for CF Services Pharmacy, but I bet someone else could provide it or it may be available on the CFF website main page.
Also, I've had my doctor write a "letter of medical necessity" to the insurance company to get drugs covered and it's worked so far, so you may give that a try--good luck! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Amy, when you checked into your insurance for the Pulmozyme coverage, did you ask them/look under pulmozyme or Dornase Alfa? It's generic name is Dornase Alpha, you might want to try that and see if you can find something listed. But I agree with the last poster, if they deny it, FIGHT FIGHT FIGHT. Also, I found a few websites that might help you:

http://www.pulmozyme.com/index.jsp

http://www.genentechcfendowment.org/apply.asp


Here's a website about tobi assistance, in case you need that.

http://www.tobifoundation.org/default.htm

Julie (wife to Mark 24 /CF)

 

[Mockingbird]

yeah, start fighting now, because pulmozyme's nothing. And every time they come out with a new medication, the price is huge. Your doctors can write some nasty letters to the insurance company, though, explaining why you need the medication, and that usually works.

I don't want to scare you, but how solid is your insurance company? i mean, Would they drop you because you have CF now? i'm not sure if that's legal, but it's something you might want to check into, 'cause insurance companies are like that.

Jarod
22 w/cf

 

[JennaB]

My insurance always denies Pulmozyme and Tobi every month. The pharmacy and/or my doctor will call my insurance company, and they will get it approved. Recently, they pitched a fit over my Creon, because they didnt' understand why I need 500 of one pill for one month. Hello! I take a million with a meal! Anyhow, they got that approved for one year, then they will have to reapprove.

I got stressed out in the beginning over this stuff, b/c it was the first time I had to deal with it. My parents used to deal with it when I was on their insurance, but they never complained about it. I guess they didn't want me knowing or worrying. But I don't stress anymore, it's just part of it. That is what your pharmacy and doctor are there for. Let them do the worrying and get it taken care of. If that doesn't work, then look for other options, like the others said. Eventually it will be smooth sailing and you won't have to worry about it.

Good Luck.

 

[abloedel]

Found out this morning that with a letter of medical necessity from my CF clinic, my insurance (which is Great West by the way) will cover 50%, so I'm getting there.

Thanks to everyone who responded and I will definitely be checking into the Genentech Endowment Program!

Hope everyone is well today!

Amy
36 w/CF

 

[abloedel]

Also, found out as a "newbie", Genentech gives you the first month free so we can see if it will work for me or not.....but you all probably knew that. Happy Friday!

Amy
36 w/CF

 

[luke]

great west...isn't that the same company that matt damon shut down in the rainmaker?

 

[abloedel]

Yes - same name, different company though...

Amy
36 w/CF

 

[thefrogprincess]

There is another drug that does the same thing as pulmozyme (its pretty new). Its supposed to be quite a bit cheaper and have equally good results most of the time. I don't remember what its called, I was just starting a new month of pulmozyme when my doc was telling me about it so I haven't made the switch yet. It is some type of saline solution, they did extensive studies on it in Australia. The foundation's web site probably has info. www.cff.org

 

[anonymous]

Hi All

I am from Australia and was part of a trial for Hypertonic Saline. It is basically a really salty saline that is supposed to penetrate mucus more effectively.

Not on it anymore, but this may be what you are talking about. In Australia Pulmozyme is covered by Medicare (this is our government health care system, which every Aussie citizen is entitled to) , so you only have to pay for the hospital to fill the prescription, which is about $21.

 

[spectorj1]

You indicated you are no longer on Hypertonic Saline ? What do you use to help

Hi.. Thank you anonymous for all your help.

If you no longer use Hypertonic Saline... what do you use to unglue the vicid sticky mucus ?
Thanks so much. JS
---------------------------------

Hi All

I am from Australia and was part of a trial for Hypertonic Saline. It is basically a really salty saline that is supposed to penetrate mucus more effectively.

Not on it anymore, but this may be what you are talking about. In Australia Pulmozyme is covered by Medicare (this is our government health care system, which every Aussie citizen is entitled to) , so you only have to pay for the hospital to fill the prescription, which is about $21.

 

[maryiris]

I do the pulmonzyme - nothing replaces it. I can tell when I have been off 3 days - everything gets really thick and hard to move again. The cost my pharmacy tab shows is somewhere around 5k per month. I pay $35 co-pay. I have GREAT insurance through CIGNA. Couldn't be happier with the way they handle the CF costs.

The saline solution does not REPLACE pulmozyme. The saline inhaled causes you to cough horribly!! It's an irritant - meant to be. The thinking is that the body loses salt - inhaling salt back into the lungs can only help - and it does. Makes you cough like crazy to move some of that stuff out. But again, it does not replace pulmozyme which actually affects the faulty DNA and so thins the mucus that way.

Hope this made sense. Couldn't sleep and I'm tired.

AS far as cost of the pulmozyme; contact CF Services. I have also recently learned that Medicare has just approved the coverage of pulmozyme.

Good luck!!

 

[briarrose]

Hypertonic saline and pulmozyme attack the mucos in two different ways. Most kids above a certain age and adults are on both from what I've read.

There is a copay assistance program through genentech for pulmozyme, as well. You have to register once a year, but it helps some. I think your clinic has to give you the paperwork to enroll you, but here is the site with more information: http://www.pulmozyme.com/insurance/copay-card.html.

Good luck!

 

[tysmama]

What you need your doctors office to do is called a prior authorization. It is a form they fill out stating why an over ride is needed. If there is no alternate drug in its class, they generally approve them for a year at a time. Problem is they may approve it to be a tier 3 and has a high copay. In that case, the copay Assistance cards and programs help tremendously. Have your pharmacy fax your dr the insurance claim info and they can process it. Hope this helps!!