Insurance Refusing Pentasa for Crohns

[CindySuz]

I have been taking Pentasa since my diagnosis of Crohns over 6 years ago. The dose is two 500 mg. caps four times a day. It has very successfully helped me control the disease and manage my symptoms all this time. Other options I tried did not work as well.

My insurance company has been fighting me over paying for my Pentasa prescription for the last 3 months. First it was over the cost allowed, then they requested all my records of diagnosis and treatment and, now they are denying coverage by saying the "The FDA recommends only 8 weeks treatment with Pentasa for the treatment of Crohns disease" They sent requests to my physician asking him to submit clinical documentation that supports using Pentasa as a maintenance drug for Crohns.

I wrote to the drug manufacturer of Pentasa and they said “Unfortunately, Pentasa is only indicated for the induction of remission and for the treatment of patients with mildly to moderately active ulcerative colitis. Pentasa is not indicated for use in patients with Crohn’s Disease (Pentasa PI).

Time is running out with the medicine I have left. I cannot afford to pay for the medicine out of pocket with my income. It is all I can do to pay the co-pay of $100 month. I am cutting down the dose to stretch out the medicine I have left but as I do the symptoms are increasing.

Has anyone else run into this problem? Does anyone have a solution?

 

[Trysha]

Have you talked with your GI and let him/her know what is happening to you?
There are other effective drugs that could be used and which could be paid for by the company making the drug.
It is up to your doctors to prescribe the drug appropriate for your condition..
So sorry that you are having such a bad time and hope things will resolve soon for you.
Feel better soon
Hugs and best wishes
Trysha

 

[nogutsnoglory]

Maybe ask advocacyforpatients.org for help in fighting this. They have sample appeals in how to deal with insurance.

 

[Tenacity]

That's disgusting! How could they do something like that!! What insurance company do you have? Maybe you should tell your insurance company that if they do not continue to cover the cost of Pentasa, you will have no choice but to start Remicade infusions, which IS indicated for Crohn's, and they can pay 15k plus a month

How about contacting the manufacturers of Pentasa and asking if they have a patients assistance program to help you? It's worth a shot.

 

[CindySuz]

Thanks for the support and suggestions.
Trysha, I have tried other drugs. The Pentasa was the final choice since it works so well for me with no side effects.
Nogutsnoglory, I will look into advocacyforpatients.org. Thanks for the suggestion.
Tenacity, The prescription plan is through Maxor. I did contact the manufacturer of Pentasa asking for documents regarding Pentasa in the treatment of Crohns and this is their reply:
“Thank you for your recent medical information inquiry regarding Pentasa. Unfortunately, Pentasa is only indicated for the induction of remission and for the treatment of patients with mildly to moderately active ulcerative colitis. Pentasa is not indicated for use in patients with Crohn’s Disease (Pentasa PI). Shire does not recommend the use of its products outside of the approved indication.”
I spent all evening pulling documentation on the use of Pentasa for Crohns. Faxing it over tonight. Wish me luck.

 

[steve55]

If you need to pay for it out of pocket, consider an overseas pharmacy. I would not be suprised if the cost is less than your $100 copay.

 

[CindySuz]

Is there an overseas or Canadian pharmacy that you can recommend?

 

[DennisD]

Wow! I have been on pentasa as a maintenance therapy since day 1 specific to Crohn's. I'm supposed to do 8 500 mg/day but I cut it in half. I literally have no idea if it works, but I guess it must because I am pretty much in remission most of the time.
How can my drs prescribe drugs that are not designed, as per the mfg, for what they are treating?

 

[steve55]

I used alldaychemist in the past, they delivered and I was happy with them. They accept orders without prescriptions though so they are a little bit shaddy.

At their site, they only have 400mg or 800mg pills not 500mg but I imagine you can just adjust the quantity to reach 4000mg per day.

400mg = 10 a day = 10*30 = 300 pills @ 0.413 = $123.90 + $25 shipping

800mg = 5 a day = 5*30 = 150 pills @ 0.504 = $75.60 + $25 shipping

If you would rather use a Canadian Pharmacy, Pharmacychecker.com is a good site to compare prices. Its going to be more expensive at the Canadian pharmacies though.

 

[DennisD]

And now my insurance is gone! Just another challenge in this challenging world.
I went to the chemist site but could not find pentasa. Does anyone know where I can buy pentasa cheap? I imagine without insurance the stuff is more expensive then hold.


HDere

 

[lindbergh]

Big mountain drugs
Canadian Pharmacy
half the price of US drugs

 

[steve55]

Its under the Generic name Mesalamine, same thing. they have it.

 

[DennisD]

Thanks for the help. Daunting task moving forward without insurance.


HD

 

[DennisD]

Well, it might not seem like it, but Pentasa certainly works. Due to the ridiculous, 825 dollars, cost of a months supply of pentasa, once my insurance ran out last week I have had to stop taking it and the results have been ugly to put it mildly. Last night I resorted to taking 1 Entocort to calm things down and now I'm waiting for a call from my GI NP to discuss the best course of action. I'm waiting for cobra to kick in, ironically, cobra costs the same as pentasa per month, so I might feel better but I'll be living in a box before to long. The pharma industry, the insurance companies are getting away with murder robbing sick people of their hard earned money while raking in multi-millions of dollars like falling leaves in late Autumn.


HD

 

[mnsun]

All this is reminiscent of the documentary "Under Our Skin", about Lyme Disease and the revolving door between regulatory bodies, insurance companies, and even research institutions. Basically, they work in tandem with the AMA, who decides on-label treatments, to save insurance carriers from having to pay for effective treatments which may cost alot.

In the case of chronic Lyme disease, which the AMA essentially says doesn't exist (and you're a nutcase if you insist otherwise), the treatment insurance carriers won't pay for is long-term intravenous antibiotics--even though this is a god-send for some sufferers.

I'm actually shocked to hear of a Crohn's patient for which Pentasa demonstrably manages their symptoms. I don't doubt it, it's just, by and large I thought it was an expensive placebo. With your comments, and the forementioned corporatist scams, MAYBE Pentasa does work for Crohn's but the AMA is influenced by health insurers to keep it as an off-label use?

Funny how doctors aren't afraid to prescribe Pentasa off-label (at the behest of pharma influence, and maybe the best interest of some Crohn's patients, but against AMA recommendations otherwise), but LDN is practically out of the question since there is no money in it. Maybe Crohn's patients could sway big health insurers to fund studies to research LDN more thoroughly, thereby saving them millions? Ah, the tangled webs keep spiralling... :evil:

 

[DennisD]

Thanks for the response,I have friends fighting Lymes, and I also miss a good friend who's Lymes led to his demise.

No one has been more skeptical than me with the 8 pills of pentasa per day. But after almost a week without it, it's been awful. And my dr just called and I'm picking samples until insurance kicks in.


HD

 

[mnsun]

I actually heard of LDN from Lymes patient who swore by it to keep her joint pain away. She said she was litterally bedridden until she started taking it. Not sure if it helps everyone, though.

OFF TOPIC: For me, I noticed it worked for a few weeks, then nothing noticeable for months. I then started toggling it to every 36 hours and noticed it would affect me on the nights--but not the mornings--I took it. However, now that I take it nightly, with a liquid probiotic at the same time, its working again. This may mean I have some sort of low level candida going on that blocks absorption unless I take it with the liquid probiotic, to keep it at bay. We'll see if it keeps working using this approach in the long run.

 

[superzeeman]

If worse comes to worse, go to the official Pentasa site and they do offer help for those that cant afford the medication. Not sure what income qualifies.

 

[LonghornGirl]

I was originally on Pentasa, 2 pills at a time for 4 times a day, and because of the high cost (even with insurance), I was able to change my medication to Mercaptipurine instead. It's SO much less $$ and I have been improving since then. Just a suggestion if you haven't already tried this one.

Good luck and get well soon, all!

 

[mbishop]

There has been some talk of a generic Pentasa formulation. Pentasa isn't patented, its the formulation of mesalamine that's FDA approved. If another drug company can show they have the same dosage release as the Shire formulation, there may be hope for a cheap generic to lower the price.

 

[Jaclyn]

The income guidelines to receive patient assistance from Shire for both Pentasa and Lialda are as follows:

Household Size Max Income
1 33,510
2 45,390
3 57,270
4 69,150
5 81,030

Any income under what they listed for household size should receive the drug for free. I had to fax the paperwork off to Shire today to try to get Lialda, as I have a $200 rx deductible, which resets on January 1, and also the deductible goes up to $500. I am opting to go this route because I simply cannot afford the $232.32 after insurance per month for the next three months until I have met my deductible.

Here is the link to the form http://www.shire.com/shireplc/dlibrary/documents/ShireCaresApplication_June2012.pdf

Shire also has prescription savings cards for the medications. I don't know about Pentasa, but the Lialda card will pay out a maximum $120 a month towards your rx, bringing your monthly rx down to a minimum of $10. You can also access those on the website for the meds. I know that this isn't specifically your problem, but I was just building on what a previous poster had suggested.

 

[KRT]

OH Wow..It burns me when insurance companies can say what we need and what we don't..I have no answers for you but I'm thinking of you and praying a solution will arrive.

 

[Light Blb]

I get my Pentasa free from Shire Cares. It would cost me $850/mo for the 2x500mg 4xday and I have no insurance since my divorce 10 years ago. Don't tell anyone <wink> but my doctor has me as an UC patient. I have Crohn's. Shire will not cover Crohn's. Before my meds came my GI gave me a lot of Pentasa. Let him know what is happening. My doctor was shocked at the price. They don't know the cost of the drugs.
Good luck!
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Crohn's, epilepsy, arthritis