How to afford Stelara on Medicare? Possible?

[darubo]

My doctor wants to start me on Stelara; it will be first biologic for me.

I found out today my co-pay with Medicare is $3,300 per dose and the drug company won't allow me to use the co-pay assistance card that lowers the co-pay to $5.00 because I have Medicare.

The website also said that there are possible charities that one might qualify for.

I know I can't be the only one with Medicare who needs Stelara, can I?

Can anyone else tell me how you were able to manage getting your treatment when you can't afford the co-pay?

I feel crushed and hopeless now that I'll ever feel better.
:sign0085:
Dana B
Lufkin, TX

 

[Lisa]

Wow, that co-pay is insane! Is there a reason they want to start you on that intead of another biologic?

 

[Scipio]

I don't understand why Stelara is your first biologic. Why does the doc not start you with a tried and true (and likely cheaper) anti-TNF like Remicade or Humira? Stelara is the latest and sexiest IBD biologic, so naturally it's going to be the costliest.

 

[Gram214]

I can really relate to being on Medicare and getting denied help with copays ! Even my " cheaper " Remicade is 938.00 for my copay this year. Out of reach for this old bird. I tried all the private funded places that were suggested to me by the manufacturer and have helped me in previous years. No funding...end of story.
I am applying to one more place..and my application is being reviewed now. I'm only two days late with my infusion but already feel like I'm going to flare.
Question : Why do they charge so much for these drugs ? Answer : because they can ! God help us all.

 

[darubo]

The reason my doctor wants me to start on Stelara is because of the things the Stelara targets, & she also said it's a shorter term of treatments & has been well tolerated by "most people"...I've still been having flares just taking Entocort; had a bowel resection in 2012 after swallowing camera capsule that got stuck -- but pictures showed stricture & blisters & doctors finally diagnosed me with Crohn's after over 3 years of DR visits & terrible suffering. Doctor said if my body is making strictures I need to be on a biologic.
I think the co-pays will be just as much or almost as much with Remicade or Humira...I don't have much hope for finding help from a charity or some other organization that will help pay the ridiculous co-pay.
I feel so utterly beaten down & defeated...so tired of having to fight to get treatment for this disease.

Dana B in Lufkin TX

 

[Gram214]

Call the manufacturer..they most likely won't help you since you are on Medicare..but they can give you a few numbers of places that just might help. I found places that helped with my Remi copays for the past three years...but now I'm afraid my luck may have run out.
I am currently applying with Johnson and Johnson. Waiting on a decision . Don't give up...keep searching !
If they can give their wonder drugs free to those with regular insurances and people on assistance..why are we that are on Medicare penalized ?
Hang in there..!

 

[darubo]

I did call the manufacturer and rep said they have no programs to assist patients with Medicare insurance.

I saw my gastroenterologist on April 17 and she said we'll try Remicade. I don't have high hopes of being able to afford the copay for it either, or of finding assistance for copay.

I don't qualify for Medicaid because I make just tiny bit more than the cutoff; make $16/month too much to qualify for foodstamps in TX...I worked my ass off for almost 40 years; started working full time at 16 years old because my father made me; have paid my own way all these years. I don't have children; I'd qualify for Medicaid if I was pregnant or had children.

I never planned on being stricken down at 47 years old with an incurable autoimmune disease! It took almost 4 years to be diagnosed, and I got to the point that I was just too sick every day to work, so I went out on short term disability from my job; they were trying to fire me because of missing work so much, even though I used my sick and vacation time.

After 6 months they fired me. I lost my car & my house & had to move 150 miles back to my hometown & live with my sister; I would've been homeless if she hadn't taken me in. Still had flares & had to go to ER regularly.

Had to hire an attorney to get SS disability approved.
I apparently make too much for any assistance, but too little to buy food & pay all medicine & doctor visit copays.
I never thought I would be in this situation & it feels hopeless.

Dana B.

 

[Gram214]

I know exactly how frustrating this is ! It's unreal...to be penalized for being on Medicare !i love how they advertise the drug are covered by Medicare..yeah..but the co pays are horrible !
I found a place called " Healthwell " foundation. They gave me a small grant that will pay for the copays of 2 infusions of my Remicade..after that ....only God knows. I'm not sure if they cover where you live. Research it ! Don't give up...
Patient Assistance Network ( PAN ) also helps when the have funding. So far they have none but that could change at any time.
Hope you can get some help...in the mean time take good care of yourself ...prayers. XX