The High Cost of this Disease

Sorry but I need to rant and vent. Isn’t it bad wnough that we have to be saddled with this ugly darn disease? Why do we also have to deal with the hassle of trying to get insurance to cover our treatment and meds and even if they do then we have to mortgage our lives to pay for them!

Yes I’m living the happy remission life but I’m so scared of rocking the boat. I was getting my Apriso from the manufacturer until this year when my Medicare prescription plan started covering it. At first it was only $105/3 months so that was cool. But next year it’s been taken off my formulary. If they approve it the cost will be about $600/month!!! So I applied for assistance again and got my denial today because it’s covered by my drug plan. Well yeah it’s covered but that’s a darn car payment a month. I’m so frustrated. I didn’t see a generic mesalamine on the drug list. Even so I’m afraid a drug change could mess up my hard-fought for remission — and that’s if I can even afford to take it!

I just want to scream and cry. But instead I came here. Thanks for letting me whine.

Sorry, fighting insurance is the official, national past time of the chronically ill :-/.

I've had to switch mesalamines a few times and it was uneventful (started with asacol HD then Lialda, then Asacol HD generic, then Lialda Generic).

One of the biggest headaches with health insurance policies is you might have to change medications. Here's a basic survival guide to help you through it. A reference on costs for those various meds: https://www.goodrx.com/aminosalicylates

1.) Ask which UC medications are on the insurance's formulary (preferred) list and which are on their non-formulary (not preferred) list. For the lowest out-of-pocket cost, choose from the formulary list.

2.) Generics are the most cost effective. Brandnames are more expensive.

3.) Use the health insurance's price estimator tool (online insurance website, or call insurance, or ask a pharmacy) to learn what your copay will be. You will need to know which medications are applicable. The most common meds used are the anti-inflammatory, mesalamine-based medications that should be available in their price estimator:

• Apriso is brandnamed, comes in 375mg pills, a typical dose is 1,500 mgs or 4 pills daily. A copay assistance card is available from the manufacturer http://www.aprisorx.com/apriso/savings-card.
  
• Balsalazide Disodium is generic of Colazal, comes in 750mg pills, a typical dose is 6,750mgs or 9 pills daily.
  
• Colazal is brandnamed, comes in 750mg pills, a typical dose is 6,750mgs or 9 pills daily.
  
• Delzicol is brandnamed, comes in 400mg pills, a typical dose is 4,800 mgs or 12 pills daily. A copay assistance card is available from the manufacturer http://www.delzicol.com/resources/savings-card/
  
• Lialda/Mezavant is brandnamed, comes in 1,200mg pills, a typical dose is 4,800 mgs or 4 pills daily. A copay assistance card is NO LONGER available from the manufacturer, discontinued on 11/1/2017 and will not be renewed into the next year.
  
• Mesalamine DR is generic, comes in 800mg pills (generic Asacol HD) and 1200mg pills (generic Lialda), a typical dose is 4,800mgs. That's 8 of the 800mg pills or 4 of the 1,200mg pills daly.
  
• Pentasa is brandnamed, comes in 500mg pills, a typical dose is 4,000 mgs or 8 pills daily. A copay assistance card is available from the manufacturer https://www.shire.com/patients/patient-services/shire-cares.
  
• Sulfasalazine is a generic,comes in 500mg pills, a typical dose is 4,000mgs or 8 pills daily.
  

4.) Once you've found a cost effective medication, call your gasteroenteroligist for a new prescription.

Oh, Flowers and Geezer. You are on Entyvio and an oral mesalamine too? Was it just a fantasy that with Entyvio, and if it works, that will be enough? If flares were only relieved by Prednisone, as Flowers reports, what is the reason for continuing all that other stuff?

I am on the slow boat to Entyvio and believed that might mean a chance of no more ordering from Canada no more closets full of Rowasa, Uceris foam and all that.

Staying on mesalamine once in remission is a debatable question. My favorite GI (who has since moved out of state), whom I trusted greatly, told me in the beginning that once on mesalamine, you were on it for life. He said there were some studies that showed if you went off it and then tried to re-start it at a later date, that it wasn't as effective as in the beginning. Maybe that study was never proved, or has since been dis-proved?

Of course, mesalamine (Apriso) never put me into remission to begin with, which is why I had to to on Entyvio, so there is that. I have tried a couple of times to cut back and only take 2 pills instead of 4 a day, but each time it seems like I had a little bit of urgency and it scared me, so I went back to my 4 daily. I kind of feel like my Apriso plus the Entyvio are what have me in a good solid remission and I don't want to play around with it. Looks like I'm probably going to have to, though.

Sick care is big money, and it's why they want us to stay sick... by continually making ineffective drugs that only treat symptoms and not root causes. The best thing we can do with our activism is donate money to research organizations that are truly investigating root causes. One example is HumanPara and the MAP research foundation. Although that relates more to Crohn's disease, it's just one example of people doing the real work.

I do not donate time or money to the big national IBD charities. They give bad advice and only support symptom management. They also get kick backs from big pharma, and big pharma are part of the problem, not the solution.

And of course, the best thing you can do personally is achieve medication free remission, if you can. The fewer drugs you're on during stable health, the better for you, and the less money these big drug companies will get to continue the vicious cycle of keeping sick people sick.

Post Edited (MarkWithIBD) : 10/18/2019 12:26:21 AM (GMT-6)

Thank you Flowers for that very clear explanation. I have not had the talk with the doctor yet about what medications to continue even after a biologic. We will see.

I recall that iPoop was advised to drop one of several prescriptions and he was thinking about discontinuing oral mesalamine. I don't know if that happened or the result.

MarkWithIBD said...
I do not donate time or money to the big national IBD charities. They give bad advice and only support symptom management. They also get kick backs from big pharma, and big pharma are part of the problem, not the solution.

Couldn’t agree more. When I began conversations and considerations of being involved with advocacy groups of big IBD “charities” I realized that they appeared to support the pharmaceuticals’ interests more than the patients’. When US rx pricing is brought down to foreign pricing is when I’ll consider returning to the US pharmaceutical market. I haven’t priced Europe’s costs but I can almost bet that an annual European vacation to purchase my rx would be cheaper than the cost of purchasing drugs in the US.

UC prisoner said...
Couldn’t agree more. When I began conversations and considerations of being involved with advocacy groups of big IBD “charities” I realized that they appeared to support the pharmaceuticals’ interests more than the patients’. When US rx pricing is brought down to foreign pricing is when I’ll consider returning to the US pharmaceutical market. I haven’t priced Europe’s costs but I can almost bet that an annual European vacation to purchase my rx would be cheaper than the cost of purchasing drugs in the US.

Most of the charities are in bed with big pharma. They educate the public on what IBD is, which is a good thing, but their education comes part and parcel with unilateral support for big pharma care. It's exactly the same as the cancer societies. Everyone thinks cancer looks like going bald and being infirm, but that only happens when you do chemotherapy. A lot of people live with cancer for decades without dying, while others die of more aggressive cancers. You aren't allowed to talk about how cancer actually works in these charities. What have the cancer societies really done for us? They tell us to eat a balanced diet, exercise, and get screening. Billions upon billions of dollars have poured into their coffers over the years, and their advice continues to be mediocre.

When I was trying out different support groups in my area, one of the groups did not allow discussion of alternative medicine, only standard treatments. At the time, I was partway into remission using alternative care, and when I started to speak about my methods, the group moderator silenced me. I left. So... these charities are not innocent. They tow an agenda for big pharma and the charities themselves are a money racket.

I eventually found a much more community centered charity with a local support group that has open discussions. I love this group a lot. We can also talk openly and freely about our experiences of corruption in the medical system, which are unfortunately more frequent than you'd think.

It's why when I come to this forum, I find it challenging that I get attacked so often for my alternative views. You don't realize how many people out there are managing this horrible disease with alternative methods, unless you let them openly talk about it and show curiosity about their stories. If you only tow the line of standard treatment or surgery, then it's not fully educating the public on what is possible.


Mark, I have edited out the political content in your post per the forum rules.

Post Edited By Moderator (straydog) : 10/18/2019 1:08:41 PM (GMT-6)

MarkWithIBD said...


Until Congress creates some serious, revolutionary reforms of our medical system, we will continue to be preyed upon by greedy psychopaths.

It's why when I come to this forum, I find it challenging that I get attacked so often for my alternative views.

Congress, if you haven't noticed is constantly busy with other, very petty, endeavors. I, for one am interested in many of your alternative views on UC, Crohn's and IBD, Mark. But I suggest your political views are inappropriate on this forum.

Peace be with you.

"iPoop: so you discontinued Lialda after a clear scope and there were no negative consequences?"
Correct.

"Over what period of time did you drop Lialda or decrease dosage of 6mp? "
1.) I finished off my lialda bottle and did not refill, I maybe had a week or two left in the bottle. No tapering.

2.) 6-months after the lialda was done, I met my GI for an in-office consult. That's when he said quit rowasa or 6MP.

2a.) I quit the Rowasa right after that appointment, did fine for a couple weeks and falsely thought I was in the clear (you know, typical UC). Then I had to RUN to crap again and my frequency went back up to 4 a day from 1-2. Went back on two rowasa a day for 2 days and was back to my normal again, phew. I staid on nightly for a few weeks.

2b.) Then dropped the 6MP from 75mgs to 50mgs, that drop was the beginning of Sept. So about 6 weeks ago. I know it is 6-8 weeks for that to have an affect, so I am not entirely in the clear. I do not see my doc until Aug 2020, so see where I am at by then. I'll just proceed cautiously ahead at a slow pace and see.

"Crawling into bed like a normal person without thinking about Rowasa would be even better."
I know, I wish that was me. Oh well, small price to pay for normalicy.

There are some elected people who are currently working on allowing Medicare to bargain with manufacturers on drug prices. It needs to be done. People are dying because they cannot afford insulin and other rx that should not be gouging prices.

I reach Medicare age this year and will save a lot on my health premium and zero on my Rx prices (generic Balsalazide). My RX will be the same price I pay now using goodrx.com. That's just wrong. I don't use my insurance now for my UC RX because it's cheaper through goodrx and it will be cheaper that way when I'm on Medicare RX plan too.

Someone is making money on the RX we pay for and that profit is being used to keep their prices sky high by influencing lawmakers not to act.

ASellers said...
I know “big pharma” is a very debatable topic, I agree there are some corrupt areas, but I think it’s worth saying that a ton of good has come out of that industry. I’m thankful for my friends dad being able to beat cancer. Now he’s on no drugs. We can cure hepatitis now too, that’s not a drug you stay on either. I hope some things change but I’m still grateful for all the innovation. When I was diagnosed I had almost no options. Now at least we have biologics. Some people need them for quality of life. We would all love a cure over a treatment of course.

I agree. I'm very grateful for my UC medications.