Help! Stelara's Cost is a Sin

For those of you on Stelara, how do you afford it??!

Long story short, I'm currently due for my third injection. While calling the pharmacy to request my refill, I discovered that my payment assistance program (Patient Access Network) is maxed out... after only ONE injection this year. Upon further investigation, I've learned that my 90mg/mL jabs every 8 weeks cost $23k. My insurance covers $7k of this, leaving me with a balance of $16k. And since the savings programs only cover $20k a year, a single injection basically eats that up! Does this sound about right to Stelara users? I can't help but feel like something somewhere is off...

I never ran into this issue while on Remicade (which I stopped because of a reaction) or Entyvio (which did nothing for me at all). I'm guessing that's because both are less pricey to start with. Not only am I in shock over this unreal pricing, but I'm shocked, too, that I might possibly have to stop Stelara, which has been working wonders for me and my fistulizing Crohns, simply because I can't afford it.

Post Edited (Colie09) : 4/8/2021 6:38:52 AM (GMT-6)

NickyFurlano said...
I live in Ontario, Canada and I'm waiting until I'm 65 to see the GI again. With GIC's paying nothing and the stock market ten times more overvalued than the summer of 1929 this is the only sensible option for me. I came up with this plan at age 55 after my resection. Today I'm 62 and a half. In the meantime I just take herbal stuff mainly garlic, bee propolis and Reishi mushroom capsules.

Nicky,

Wouldn't Stelera be covered by the Trillium health benefit?

73monte said...

NickyFurlano said...
I live in Ontario, Canada and I'm waiting until I'm 65 to see the GI again. With GIC's paying nothing and the stock market ten times more overvalued than the summer of 1929 this is the only sensible option for me. I came up with this plan at age 55 after my resection. Today I'm 62 and a half. In the meantime I just take herbal stuff mainly garlic, bee propolis and Reishi mushroom capsules.

Nicky,

Wouldn't Stelera be covered by the Trillium health benefit?

True if your income is reasonably low unfortunately my income is sky high but I can't justify paying out of pocket for drugs and hoping for reductions.

Colie09 said...
For others who may run into this problem, look into the Johnson & Johnson Patient Assistance Foundation: https://www.jjpaf.org/

If your drug is a J&J drug (Remicade, Simponi, and others are) and your application is approved, J&J will provide your medication free of cost for one year. And I believe you can re-apply after that. You do have to meet certain eligibility reqs - you must be a U.S. citizen and make under a certain income based on household size (for single ppl it's $51k). Initially, I thought it was just for those w/o insurance, but if you're insured, you can still be eligible. I'm filling out the application as we speak.

In other good news, my GI has a Stelara sample he's letting me have tomorrow!

Hi, I’m kind of an expert on Stelara. Did you get approved for the patient assistance foundation? If not, there’s another option. Stelara comes in a 45mg vial that can be billed medically and not through your pharmacy benefit. You may have better medical coverage than pharmacy coverage. I can walk you through the steps if necessary.

NickyFurlano said...
I live in Ontario, Canada and I'm waiting until I'm 65 to see the GI again. With GIC's paying nothing and the stock market ten times more overvalued than the summer of 1929 this is the only sensible option for me. I came up with this plan at age 55 after my resection. Today I'm 62 and a half. In the meantime I just take herbal stuff mainly garlic, bee propolis and Reishi mushroom capsules.

I'm in Ontario and all my biologics are covered, including Stelara by the pharmaceutical company. I haven't paid a cent. I'm unclear as to by you're waiting to see your GI until you become 65. OHIP covers the cost of all docs visits and tests. If you need medical care and drugs it is there for you. Don't put it off, especially with crohns.

Re: I'm in Ontario and all my biologics are covered, including Stelara by the pharmaceutical company. I haven't paid a cent. I'm unclear as to by you're waiting to see your GI until you become 65. OHIP covers the cost of all docs visits and tests. If you need medical care and drugs it is there for you. Don't put it off, especially with crohns.

Prescription drugs are not covered until you reach age 65 in Ontario then you just pay the 2 or 5 dollar dispensing fee. All the biologics are classed as prescription drugs. OHIP never paid for prescription drugs. A change in the law made prescription drugs free in Ontario if you're under 18 years old. That may have only been because of Covid-19 and that law could be rescinded.

U B Tough said...
To clarify - Stelara and all my biologics are covered by the pharmaceutical company. Your doctors visits are covered by OHIP -therefore you should see your GI. Prescriptions are self covered - until 65. Liberals voted down universal pharmacare Your GI may also be able to provide you with free drugs as they get "samples" from the pharmaceutical company. Your GI should have informed you that biologicals can be covered.

I always paid out of pocket. When I was on the Trillium drug plan I made too much money and still had to pay for 100 percent of the cost of prescription drugs. The last time I saw the GI was 2014 about one year after I got a resection. He said the colonoscopy looked good and I never went back. I got IBS all at the same time it just hit all at once, before that I could eat anything and it didn't bother me. That was in 2008 and in 2005 I nearly died when they didn't do surgery because my intestines split along a 9 inch swath. I was on IV in the hospital for about a week then they sent me home with a prescription for cipro and flagyl. They should have done surgery in 2005 but it got put off until 2013 and I had a nearly total blockage for 8 years because of scar tissue.

It's a month later and I'm still trying to figure this mess out! As if Crohn's isn't bad enough, we have to fight for treatment too...

Castroh - My doctor initiated the medical benefit route, but asked me to call the specialty pharmacy (Alliance RX Walgreens) who I previously went thru for the injections...which doesn't seem right. (If they're a pharmacy, won't they always run things thru my PHARMACY benefit??) Anyway, I called them, and they told me I'll basically have the same $8k copay...which, again, doesn't seem right. I see where you advised to call Janssen directly, which I'm about to do. But is my doctor's office (who also administers my infusions) supposed to directly buy the meds thru Janssen and not Alliance? Do they know this? Ugh, I'm
highly confused as to how all parties are supposed to get on the same page about my Stelara! My previous treatment coord recently left, and I never used to have to worry about any of this legwork. I suppose I was blessed to have her and I didn't even realize it.

Post Edited (Colie09) : 6/7/2021 4:10:47 PM (GMT-6)