Stelara cost is criminal ($25k)

The cost of these medications should be outright criminal. They hike the prices to such an extent on these drugs because they know we need them to survive and live a somewhat normal life.

Stelara initial dose is 25,000 dollars. Every single injection afterwards is 10,000 dollars every 8 weeks. If it works and you need a higher dosage like every 4 weeks, you're looking at a cost of $150k per year for this drug.

No wonder insurance companies are rejecting people who want to be on this drug. I got initial dose of this stuff in late September and it worked great but the injections haven't worked as well and I'm getting sick at the 4 week mark. My insurance fought to prevent even approving this drug every 8 weeks I have doubts they will approve 4 and what if I need a few booster infusions throughout the year?

Everyone gets mad at the insurance companies but the pharmaceutical companies are making money out the you know what on these drugs profiting off of people's potential misery.

Totally agree on the insurance and pharmaceutical front. If you remember, when Banting invented insulin, he refused to patent it in his name, as he felt it unethical to profit from it, and that it was a medication for the people.

As you stated, it's truly "outright criminal" hope you come up with some alternatives.

You are welcome I am here anytime.

You must have read all my previous postings. LOL. That is almost exactly what happened to me. Fistulas, incontinence, pain and sepsis....and now a colostomy. I will probably never be "hooked" back up. The ostomy works just fine with me and there are too many studies showing difficulty when it's reattached. So when you do fret remember that an ostomy is what you make it.

Thankfully the prelisted combination fueled the meanness in me so I could fight with the insurance companies. Lol...

I did forget something. There are times when companies may have assistance programs available that can help you. I know Remicade had one and they helped me once it went thru.

Hang in there. (Thank God we can vent with one another. It seems like others just don't understand like the people on here)

Clo

I am an older female. Fertility issues did not enter my mind. I already had 2 children. A friend had her eggs saved. A male person in our ostomy group had his sperm saved and yet another lady decided to adopt. There are options.

I have had 2 ostomy surgeries... The first one became obstructed due to hernias. The second surgery moved my stoma and repaired some of my hernias. My last surgery was a result of a rectovagina fistula that was located very close to the vagina opening. During my first 2 surgeries they left some of my sigmoid attached to my rectum and anus. I still had active Crohn's in that portion, the fistula would release mucus with bacteria by my urethra, the bacteria would enter the urethra and migrate to my bladder and kidneys. UTIs for a whole year. The bacteria became resistant to all the antibiotics I used except for Cipro. Rather than wait for that to happen my Colorectal surgeon went back in (3rd surgery) and removed the sigmoid and rectum. (There is still a very small amount of rectum left) They scraped my anus and sewed me back up. It helped but did not completely resolve the issue. Methotrexate and Remicade make it so the small amount of mucus that is released still impacts me--but now we are able to use D-Mannose to counteract the bacteria and the infections have stopped. (D-Mannose is a supplement that helps prevent UTIs in some people.

As far as not being able to handle the surgery, or an ostomy... Any of those things. You are stronger than you think. If you have problems getting thru those situations there are people that will help you. You will need to reach out to family, friends, your physicians, a counselor, a religious leader if you are comfortable with that or support groups.You are stronger than you think. Research, prepare and reach out. I am not a touchy feely person. Reaching out is hard for me. It gets easier.

When I got my 1st ostomy it took 45 minutes to change my bag at home the first time. I was hyperventilating, sweating, nauseated, and felt like I was going to pass out. My ostomy nurse walked me thru it over the phone. It got easier. Getting thru/over the surgery. I coded thru 2 of my surgeries. Afterwards I didn't think I could do it, I wasn't strong enough....One thing that consistently amazed me was how much better I felt after each surgery. The first surgery I felt clear headed, no pain...amazing..but there were always these nagging issues with the portion left behind. The second surgery I could tell they had removed most of my problem areas. My anus and the tiny portion of rectum that we didn't get out still gives me some issues but not like before.

So when I tell you that you are stronger than you know--you are. People are amazing at doing things they didn't think they could. Another portion of the equation is your mind set. You get to choose how you want to live your life and have others relate to you. Once I felt better I chose to think positively about my life, ostomy, and health. That does not mean that I don't struggle... I do. I just choose to look at the positive things. With an ostomy I am no longer having accidents during the night or am always searching for a bathroom. It gives me some control with an incontrollable disease. I get to choose... Do I want people to see me as a warrior fighting this disease, a victim, or someone just getting by. I do not do it alone. The people on HW help so much, the people in my ostomy group help, and my family. My sister sometimes reminds me to put on my big girl panties and not be a sissy. My other sister reminds me how much she admires my courage. My spouse reassures me and helps prop me up when I feel like I just can't do it..so many people... And then I take a breath... And I get back up.

You're right, our treatments/surgeries might not be a cure but they might help you go into a remission that may last a very long time or it might help improve your life while we are waiting for something better.... Even a cure.

Hang in there!
Clo

Post Edited (clo2014) : 1/9/2022 11:27:22 AM (GMT-7)

The hiking cost is not the fault of the insurance companies who after all do not exist purely for our benefit and to make us healthier. They exist with a shareholder structure to make a profit and to continue in operation and to be able to then provide us with some medical options. If they did not make a profit then they would ultimately go out of business and we would have far less drug choices. That is the harsh reality.

Some of these costs are indeed very high. Ultimately though it is big pharma here who are charging higher margins and making a lot more profit than the insurance companies. There is the insurance element, the pharma element and the government and regulation element that need to all be involved to make these drug choices more affordable.

The situation is far better with the health systems in Europe. I do not know of too many people over here who have had issues getting sign off for these drugs when they are indeed needed. I'm glad I'm not part of the American healthcare systems which are so often talked about and criticized on these forums.

They need to have more transparency. If they did people could shop around. They also need to forwarn people of these costs. It's wrong. I don't mind companies making a profit...but when you have individuals suffering and worse...there should be some type of assistance. That measly 20 it 25k isn't enough.

Where I go for my infusions, they run a preliminary insurance run. They expect you to pay for your portion up front. I have seen them turn people away when they could not pay. My hands shake every time I go in. Fortunately I have double insurance so it is working out ok for now. I just wonder when that will change. If Medicare could negotiate prices I think that would help lower the costs also.....although Medicare does not cover pills or things like that..do they?

Colie09, sometimes if you contact the manufacturer they will provide additional assistance to people--depending on their income level. I was able to arrange for some assistance for my Mom years ago. It took me almost a year but I finally got it to go thru. It was very time consuming though.

As far as American insurance and medicine.... I dunno. I have friends in England and Canada. They both complain about obtaining same day doctor visits, long surgery waiting periods and/or doctor's using medication off label ....

It's all a stressful situation which does not help us at all.

Colie09 said...


On a side note, I don't know why medical professionals don't offer us a heads-up on prices. (At least mine didn't.) I'm sure they know it isn't $50...

This made me laugh a little bit just the way you put it. I dunno. Thanks for that.

I don't even know if it's possible to do that. I still shake like a wet dog when I go in for Remicade because of billing and payment fears.

If they let you in you are going to have to post instructions on here so we can all come to.

Sorry I am unable to help--and even sorrier that you have to go thru this.

Clo

In Ontario, Canada you can get on the Trillium drug plan and not have an insurance plan. They take your income from the middle of the year to the middle of the next year. It helps to be poor. It isn't for the rich making like a million dollars a year. At 65 you just pay he dispensing fee like 2 or 5 dollars and don't need to be on the Trillium drug plan.

https://www.ontario.ca/page/get-help-high-prescription-drug-costs#:~:text=The%20Trillium%20Drug%20Program%20helps,valid%20Ontario%20health%20card%20number