Intro and Stelara cost information

[yamamotob]

Howdy everyone:

I ran across this website when trying to research about coverage for Stelara.  Does anyone have any information about Stelara costs and hidden problems with Janssen's co-pay program?   It seems too good to be true.  Has anyone had any bad experiences with the co-pay plan?  Please read below and help if you can.

The patient here is my wife--her English is limited enough that I do most of the medical research and talk to most of her doctors.

Background:
About 4 months ago wife finally a diagnosis of psoriasis for skin problems on her feet. The dermatologist asked a few follow-up questions about eczema and hand stiffness, gave a prescription for Methotrexate, and referred to a rheumatologist.
The rheumatologist didn't think much of the psoriatic arthritis possibility but said that Methotrexate is a treatment for it so see what happens.  He brushed off the mild osteoarthritis in her knees that has been bothering her for 14 years--no treatment seems to help with that--at least nothing the insurance will cover like Hylagan.

Wife didn't have much improvement for two months so the dermatologist increased the dose for a month.  Wife had some marginal improvement at the higher dose but nothing to get excited about.  So the dermatologist suggested Stelara.  We stopped the Methotrexate.  The feet symptoms and hand stiffness got worse rather quickly.  I am thinking that a lot of her chronic health problems are actually psoriasis and psoriatic arthritis.

I know from reading that Stelara has helped a number of people here.  My concern is the cost.  Our insurance denied the authorization request.  Even if it was authorized we probably couldn't afford the 20% copay.  The drug manufacturer has some co-pay program where the medicine may be free for a year but my wife and I have trouble believing this and are paranoid about getting hit with catastrophic medical bills.  The plan says $10.00 per dose for $10,000.00 annual maximum benefit.  The street price is $10,000 per shot.  At that price we could afford 1 shot.  Even if, somehow, we only had to pay $10 per dose for all six annual doses we can't afford to continue treatment after that.  What's next?  I know there is no cure--just treatment.  We just don't want to go bankrupt getting treatment. 

Any advice or information from anyone in the know would be greatly appreciated.
I'll keep posting updates.  We see the rheumatologist in two days and the dermatologist is offering the starter shot free while they wait for approval from Janssen.  We really aren't sure about this.

Thanks.  Sorry for the novel.

[Caroline]

Hello Yamamotob,

Welcome to the Forum.

We have several people on the forum who use Stelara. You will soon hear a bit of information from Fred.

Besides Stelara, there may be more options to go to, as I understand that the costs of it in the US may be very high.
We will point our US forum helper, Kat, to your post. Maybe she has some advice.

The US system of social security and insurance, is quite different from e.g. the UK and France.

We will come back to you, with hopefully more information  and certainly to welcome you and your wife.

Caroline

[jiml]

Hi Yamamotob and   to the forum, as a member you can search the database via the search button above I'm  sorry I can't help with your question as I'm from the uk but I'm sure some of our American members will possibly have some answers, I am aware that there is a help programme on the stelara website where your costs for the first year are as low as $5 a shot
The web address is here on the forum Stelara (ustekinumab)

Kat one of the forum helpers has also done a thread to guide you through the maze of healthcare that might be useful see here Insurance Info for the U.S.

I hope you enjoy your time here and find some answers to your questions

I would take the low cost option for one year for your wife and see what Stelara can offer for future years later
Jim  

[Fred]

Hello yamamotob   to Psoriasis Club.

I can't add more than the others as I don't understand your system. I can however recommend Stelara as a treatment as it gave me my life back.

I assume by Caroline's post that she has been in contact with Kat who may know more, though I think she is rather busy at the moment so the link Jim posted may help for now.

Another thing you could ask about would be Cosentyx. It's a similar treatment and getting very good reviews, and as it's a new drug they are are pushing it so I'm sure they would operate a similar system.

You can find out about it and all the bio's here: Biological Treatments For Psoriasis *You will find web addresses in each post.

Regards.

Fred.

[Kat]

Although Rheumatologist can treat osteoarthritis, from my experience it has been better treat through doctor specializing in orthopedics. Osteoarthritis is easy to diagnose with x-ray. Just a suggestion on that.

Sadly there is no clear cut answer to the cost. Sometimes insurance will require you try a medication for a while (like Methotrexate) before you are able to get approved for something else. You may have to fight for this one. If it's not working it will take your doctor getting on board and telling the insurance that the medicine doesn't work for your wife, and if the doctor isn't convinced that she needs to try something else then I'd try another doctor. As you have said, most insurances here will require you to pay 20% which is still quite a bit of money. There are prescription plan supplements but I personally have never checked into those so I'm not much help. I would suggest checking for options with the manufacturer for help but you've already done this so I would check further into that. So first, get insurance approval by getting your doctor or another one to work with you. Second get all the information you can from the manufacturer to see if they can cover your out of pocket expense. Even if it is for only a year at a time then personally I would try it and see how things are in a year. It's possible that you could find help again in a year (as it benefits the drug company so they may extend it) or since we are in an election year who knows how things will be with insurance a year from now (probably not much better, but one can hope!) My understanding is that a lot of the manufacturer's DO offer some help with cost so don't be totally leery of that.... but of course be smart and read all the fine print to make sure you know what they are willing to offer you.

Also a year of relief is just that, a year of relief and it's possible that once clear (not saying Stelara will clear her but you won't know on any of these until they are used) your wife MIGHT be able to maintain her progress on something easier on your finances. There could be other options as well.

Sorry I know that isn't much help but I do know a lot of people in the US are using expensive medicines without paying outrageous amounts so don't think it's impossible

Best of luck!

[yamamotob]

Thanks to all of your replies and advice.  Sorry for the delay in getting back to all of you.  I didn't forget--it's been a bit difficult recently.  Have a bit of time off with the holidays so I will try to give some recent details within the next few days.
Quick summation is she started the Stelara treatment in early December and will get the next treatment next week.
Too soon to know if it is doing any good.

[Fred]

Thanks to all of your replies and advice.  Sorry for the delay in getting back to all of you.  I didn't forget--it's been a bit difficult recently.  Have a bit of time off with the holidays so I will try to give some recent details within the next few days.
Quick summation is she started the Stelara treatment in early December and will get the next treatment next week.
Too soon to know if it is doing any good.

It's a good treatment and does work quick it also gives good clearance once you get onto the maintenance dose every three months.

Good luck.

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