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Cost of Stelara

Lynda Lynda

Member
Location
Arizona
If you have been prescribed Stelara, how much do you pay for each syringe ?

I live in the USA. I have Crohn's Disease and been using Humira Injection Pens for 3 years. I'm currently having a Crohn's flare. My GI just prescribed me Stelara 90mg / mL syringe once every 8 weeks. Today I received approval from my Health Insurance Company to receive this medication through December 31st, 2021.

My Humira was free through help from their Patient Assistance Foundation. Stelara is listed as the second most expensive prescription medication in the USA, of course.

My out-of-pocket cost, as quoted to me today by a Customer Service Representative at my Health Insurance Company, is almost $3,000.00 for a syringe. I collect Social Security benefits monthly, so I do not have $3,000.

I am waiting for a Patient Portal Message or a phone call from my Gastroenterologist Medical Assistant. I have a GI appointment on May 26th, 2021.

If you have any information about how I can apply for assistance for my cost of the Stelara, please pass that on to me.

Side Note : I am supposed to receive a Stelara infusion ( 3 vials ) as my "first dose" at an Infusion Center. I do not know how much each vial costs. Usually it takes two or three calls to the Customer Service Representative at my Health Insurance Company to get a clear answer about anything.

Of course I am worrying about all this and I haven't even had my GI appointment yet !
I like to be informed so that when I walk into my appointment I have some idea of what is going on.

Lynda 🌼
 

my little penguin

Moderator
Staff member
Did you sign up for Jansen care path ??
That helps cover most of copay except $25
Call their 1800 number
 

Lynda Lynda

Member
Location
Arizona
Did you sign up for Jansen care path ??
That helps cover most of copay except $25
Call their 1800 number
I have not signed up for any financial assistance at this time.
Thank You for the information about Jansen Care Path !
 
Location
San Diego
I have the CarePath program and it's great. I pay only a $5 copay for each dose.

Qualifying for CarePath does not depend on your income or other ability to pay. It depends on whether your insurance policy is compatable with CarePath. Most insurance policies provided though employers will work. Medicare parts C or D will not.
 
I will be starting Stelara soon as Entyvio is no longer working for me. I am on Medicare and have a Medicare advantage plan. My co-pay for the med will be $3,326 if I go through them. I do not qualify for the Jansen Care Path due to being on medicare but was advised to apply through the Johnson and Johnson financial help. You can go to that website jjpaf.org and fill out the one page for your info and have your doctor complete their page and fax it in. Right now I have sent that info to my doctor and waiting for them to complete it. I will update after I hear back from Johnson and Johnson about what my co-pay will be.
 

Lynda Lynda

Member
Location
Arizona
I will be starting Stelara soon as Entyvio is no longer working for me. I am on Medicare and have a Medicare advantage plan. My co-pay for the med will be $3,326 if I go through them. I do not qualify for the Jansen Care Path due to being on medicare but was advised to apply through the Johnson and Johnson financial help. You can go to that website jjpaf.org and fill out the one page for your info and have your doctor complete their page and fax it in. Right now I have sent that info to my doctor and waiting for them to complete it. I will update after I hear back from Johnson and Johnson about what my co-pay will be.
I am in the process of applying through Johnson & Johnson Patient Assistance Foundation for Stelara Financial Assistance.
From what I understand, so far I have been approved for the every 8 week syringe through the end of 2021.
I was told by JJPAF that my Stelara every 8 week syringe will be free for me.
JJPAF has requested some additional information from my Health Insurance Company to complete my application for review for the Stelara Infusion. I will hopefully receive that information from my Health Insurance Company soon so that I can fax it over to JJPAF.
I was prescribed the Stelara on 4/30/2021 and my Health Insurance Company / Speciality Pharmacy approved it at the end of May 2021.
I have been taking Budesonide, MTX and Folic Acid for the past 3 months.
Take Care and I hope all goes well for you.
Lynda 🌼
 
Location
San Diego
I will be starting Stelara soon as Entyvio is no longer working for me. I am on Medicare and have a Medicare advantage plan. My co-pay for the med will be $3,326 if I go through them. I do not qualify for the Jansen Care Path due to being on medicare but was advised to apply through the Johnson and Johnson financial help. You can go to that website jjpaf.org and fill out the one page for your info and have your doctor complete their page and fax it in. Right now I have sent that info to my doctor and waiting for them to complete it. I will update after I hear back from Johnson and Johnson about what my co-pay will be.
Which Medicare Advantage plan covers Stelara with a $3,326 copay? And is that $3,326 copay per dose or per year?
 

Lynda Lynda

Member
Location
Arizona
My AARP Medicare Complete Insured through United Health Care ( HMO ) covers my Stelara. My co-pay for each syringe would be over $2,800.
 
Hope this will not be a battle for you like it has been for me. Every week I am on the phone with the Specialty Pharmacy, Medical Insurance company and my Dr's office. I get a letter I am approved for 3 injections, then after each one, the pharmacy calls me and tells me the Insurance company rejected the claim again. So, just keep up the phone calls with everyone and push as hard as you can to get the syringe in a timely manner and sign up for Jannsen carepath and JJ foundation. You should have no issues with getting a $5 copayment through one of them.

Note for you on the JJ Foundation: there are ways to have them help you if they are rejecting you due to your income. Be creative on what information you give them.

And on your pricing....Jannsen jacked the price up to $37,000 per syringe as of 2 weeks ago. My prescription is every 6 weeks. I see the EOB and the insurance company gets a $10,000 discount. But now that Jannsen up'd the price - it is now the most expensive medication in the world :(
 

my little penguin

Moderator
Staff member
Below are the 10 most expensive drugs in the U.S., along with their annual cost, based on length of therapy.

  1. Zolgensma (AveXis): $2,125,000

  2. Zokinvy (Eiger BioPharmaceuticals): $1,032,480

  3. Danyelza (Y-mAbs Therapeutics): $977,664

  4. Myalept (Aegerion Pharmaceuticals): $889,904

  5. Luxturna (Spark Therapeutics): $850,000

  6. Folotyn (Acrotech Biopharma): $793,870

  7. Brineura (BioMarin Pharmaceuticals): $730,340

  8. Blincyto (Amgen): $712,672

  9. Ravicti (Horizon Therapeutics): $695,970

  10. Soliris (Alexion Pharmaceuticals): $678,392
list of most expensive drugs in the US now
Based on annual cost
So Stelara is up there but not the most expensive yet

It took 7 months but finally got Stelera approved by insurance for 1 whole year again after lots of back and forth /appeals etc … even though it had been approved year for the past 4 years
The increase in price explains why the insurance company was fighting it more 🙄
 

Lynda Lynda

Member
Location
Arizona
My Stelara Injections have been approved by JJPAF through 2021. My application for the Stelara Infusion is still pending.
 
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Lynda Lynda

Member
Location
Arizona
How long is this Stelara Infusion Approval Process going to take. I'm in tears. I just spent 55 minutes on a conference call with United Health Care and Johnson & Johnson Patient Assistance Program. Their answer to me after 55 minutes.....have my GI office fax over to UHC a prior authorization letter for my Stelara Infusion. I just left a message at my GI office to take care of that. My GI office is already sick of me and this Stelara assistance process. I have been in a Crohn's flare for 8 months. Right now I can only eat a full liquid diet and am extremely nauseated. I don't have the mental / emotional energy to make any more of these phone calls. My GI feels I am taking up too much of his Staffs time, that they have other patients too. Yes, my GI actually tells me this. My Stelara Injection and Stelara Infusion prescriptions were written on 4/30/2021. Why does the patient have to make all these calls and requests ? Shouldn't my GI office and my Insurance Company take care of this ? I have Medicare and so that is the problem ? I'm shaking. I cannot make any more phone calls, I can't do it. I can't.
 

my little penguin

Moderator
Staff member
Please find a new Gi
Not sure on adult side
But my kids specialists have staff just for prior authorization
That is all they do
I still had to call some but not that much
Medicare may be the issue with them and cost
They should have submitted prior authorization a long time ago
 
Location
San Diego
Please find a new Gi
Not sure on adult side
But my kids specialists have staff just for prior authorization
It's the same for adults. My GI's office has a fulltime insurance coordinator. I've had to call her a few times over the years when the insurance company suddenly demanded more information for some reason, but the delay in getting the Stelara dose was never more than about a week and no doses have been delayed past their scheduled administration date. The loading dose was nearly four years ago, and I don't recall any trouble getting that at all.
 
Hope this will not be a battle for you like it has been for me. Every week I am on the phone with the Specialty Pharmacy, Medical Insurance company and my Dr's office. I get a letter I am approved for 3 injections, then after each one, the pharmacy calls me and tells me the Insurance company rejected the claim again. So, just keep up the phone calls with everyone and push as hard as you can to get the syringe in a timely manner and sign up for Jannsen carepath and JJ foundation. You should have no issues with getting a $5 copayment through one of them.

Note for you on the JJ Foundation: there are ways to have them help you if they are rejecting you due to your income. Be creative on what information you give them.

And on your pricing....Jannsen jacked the price up to $37,000 per syringe as of 2 weeks ago. My prescription is every 6 weeks. I see the EOB and the insurance company gets a $10,000 discount. But now that Jannsen up'd the price - it is now the most expensive medication in the world :(
Hi:
How do I find out about having the JNJ foundation help if they reject you due to income and what information is absolutely necessary? I just went on medicare and don't want the very high out of pocket expense for Stelara for medicare patients. can you PM me?
Hope this will not be a battle for you like it has been for me. Every week I am on the phone with the Specialty Pharmacy, Medical Insurance company and my Dr's office. I get a letter I am approved for 3 injections, then after each one, the pharmacy calls me and tells me the Insurance company rejected the claim again. So, just keep up the phone calls with everyone and push as hard as you can to get the syringe in a timely manner and sign up for Jannsen carepath and JJ foundation. You should have no issues with getting a $5 copayment through one of them.

Note for you on the JJ Foundation: there are ways to have them help you if they are rejecting you due to your income. Be creative on what information you give them.

And on your pricing....Jannsen jacked the price up to $37,000 per syringe as of 2 weeks ago. My prescription is every 6 weeks. I see the EOB and the insurance company gets a $10,000 discount. But now that Jannsen up'd the price - it is now the most expensive medication in the world :(
Hi:
How do I find out about having the JNJ foundation help a medicare patient? I don't want the foundation reject me due to income and what information is absolutely necessary? I just went on medicare and don't want the very high out of pocket expense for Stelara for medicare patients. can you PM me?
 

my little penguin

Moderator
Staff member
Most patients with Medicare pay between $0 and $32 per month for STELARA®.3

This number represents Medicare Part D, including those with LIS.

If you are enrolled in Medicare and are using Medicare coverage to pay for your medication, our Medicare Resource Guide provides information on sources for cost support that may be available.

In addition, you may be eligible for the Extra Help program provided by the Social Security Administration.
From
 
Location
San Diego
Most patients with Medicare pay between $0 and $32 per month for STELARA®.3
As far as I've been able to determine this statement by Janssen is nonsense. Since I'm planning to retire soon, I've been investigating Medicare coverage for Stelara for about 3 years now. I called Janssen to see where they are getting this information from and whether they could recommend any Part D policies that would cover Stelara for "between $0 and $32 per month." They could not provide any information on either one.

Checking all options on the Medicare website shows that many Plan D policies offer little or no coverage for Stelara. The ones that do offer coverage have a co-pay of between $2500 and $4000 per 90 mg dose. So for a patient on a standard 8 week dosing schedule that works out to about $15,000 to $24,000 per year for a Crohn's patient on Medicare.

Patients used to be able to get their Stelara well-covered through Medicare Part B (medical procedure coverage) provided that the injection was performed by the doctor's office rather than by injecting it yourself at home. But that is in the procees of going away since the Medicare Inspector General's office reclassified Stelara to Part D, since it is in fact a self-administered drug after the initial loading dose. They temporarily delayed the final implementation of the reclassification due to the COVID emergency, but according to the insurance person at my GI's office it is now once again poised to go through. So goodbye to the Part B option.

So as things currently stand, unless you are are very low income and can qualify for Janssen's assistance program, you should expect to pay in the tens of thousands per year for your Stelara when you retire and go on Medicare.
 
As someone who has just enrolled in Medicare, this is exactly what I have found. I am not on medicaid or disabled and as far as I can tell my income will disqualify me from any support. Next year my out of pocket expenses for Stelara will be over $12,000. Medicare wants it's enrollees to pay 25% of the drug costs until you are out of the donut hole ($6,000 for the first dose of stelara) then 5% of the drug costs for the rest of the year ($1,200 for each suceeding dose of Stelara x 5). I am also looking for a solution.
 
Location
San Diego
I am also looking for a solution.
One possible solution is to enroll in a Part C Medicare Advantage plan. Here in San Diego Kaiser offers an attractive Plan C that covers Stelara for only about $2500 per year. That's a substantial savings compared to other Part C or Part D plans, but it comes at the price that all my health care must then come though Kaiser. So I would have to leave the GI who first diagnosed and has successfuly treated my Crohn's for over 10 years now and switch to some unknown Kaiser GI - who may not even continue to prescribe Stelara for me if s/he so decides. (Does Kaiser pressure their GIs to avoid prescribing high-priced drugs like Stelara?) And I'd have to switch my GP and cardiologist over to new Kaiser docs as well.

As far as I know, Kaiser is a fine healthcare organization, but I'm really reluctant at this late date to start all over again with a whole new cast of characters. Unfortunately, for someone in my situation, Stelara is the high-priced tail that wags the healthcare dog. Finding the best Stelara option dwarfs all other considerations in choosing Medicare coverage.
 

Lynda Lynda

Member
Location
Arizona
Well, JJPAF has approved my Stelara Injections ( syringe ) every 8 weeks, free of charge to me, through 2021. 👍

Of course now I am working with United Health Care regarding the Stelara Infusion !
I have had 2 conference calls between UHC and JJPAF and myself. 😣
 
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