Enbrel Lawsuit

** Originally posted by hypr004 **

I have had psoriasis for 10 years. I was put on ENBREL throught the encourage foundation and was completely clear. They eventually cut me off because of my income. Psoriasis consumes 85 - 90% of my body including my hands, feet, legs elbows arms etc. If i had been informed that my psoriasis would nearly DOUBLE after i stopped using ENREL, i would have never even used it. I can barely walk some days it's so bad.

It's time to fight these lieing deceptive drug companies. What does everyone else think?

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** Originally posted by Patty925 **

I'm so sorry to hear this. I"m on enbrel right now and have been on it for over 2 years. I was told you p doesn't come back double but I"m not sure.

I certainly hope not at all. :eek: What did you derm say?

Please keep us posted.

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** Originally posted by Emsmom **

I'll start by stating that I'm not a fan of lawsuits, unless all else fails. That said, I doubt that the makers of Enbrel knew that your psoriasis might worsen coming off of Enbrel. All of these drugs are still quite new and there's still a lot to be learned. My daughter has been on biologics for 5 years now (She's 15, put on them for her arthritis, not her psoriasis). Her rheumatologist said they're still trying to figure out how and when to stop the meds. They simply haven't been around long enough to for that to be known.
Rather that a lawsuit, why not go back to the foundation and request that they help you get the meds again if your insurance won't cover them?

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** Originally posted by NL **

Isn't there an assistance program through Enbrel to help with the cost?

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** Originally posted by Raynard_the_Fox **

I was on Enbrel 3 years ago, it cleared me and kept me clear for 9 months after coming off of it. My P is back but it did not come back as bad and it came back really slow and even now its not as bad as it was when I started Enbrel.

also know others here that have come off of it and not had there P come raging back worse then it was.

I am sorry though your having such a hard time with your P now. I don't think any deceit was intended here and more an example of crappy P is. I would say this more is like one thing working for one person and not for someone else, its very frustrating to use the same treatment as another and they clear and you don't but its the nature of the beast we face with P.

hope you find something that helps with the P soon.

Take Care,
Fox

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** Originally posted by LoriASoCal **

I'm not a fan of lawsuits either. I would like to point out that this reaction can happen with any treatment- even that of uvb - even that of natural sunlight. It's a hazard more- of the autoimmune nature of our disease- not the drugs we are using. I've had this disease for 36 years. Stopping any treatment -even something as mechanical as- emollients or tar or anthralin 'cold turkey' with nothing to replace it can cause a huge flare.

The more potent the medicine- the greater the chance of this occurence. I'm deeply sorry for what you have gone through but I hesitate to blame enbrel. Perhaps you should talk to your doctor about the protocol he used for taking you off the medicine? Sounds like he holds some responsibility here. No, I'm not saying sue him. These are newer medicines. My doctor had me sign a release stating that I was aware of the implications of the medicine known or unknown. I gladly signed it. I wouldn't blame him for helping me get on medicine that I needed/wanted.

Again, so sorry you are going through this.

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** Originally posted by LoriASoCal **

Umm, yeah- einna was able to be on it and come off and stayed clear for a long time. My P rages out of control with no treatment. I've had it long enough to know that 'I'm special' that way...lol

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** Originally posted by JKNY **

Unfortunatley, a weird part of psoriasi is that it frequently rebounds after a treatment is stopped. I don't know the legalities of what responsibilities the doctor and drug companies have in telling the patients about this. Ask an ambulance chaser. This is where lawyers make their millions.

I don't see the drug compnaies as evil intenters in this. Our doctors need to explain to us what our diseaes is all about. Now the insurance companies and their denial of the latest treatments because of costs, well that's purely immoral. A job i would never do!!!!!!!!!!

Too many lawsuits will just make doctors afraid to treat us--they'll have us back on coal tar or trips for Goekermann month long mud wraps.

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** Originally posted by Alyssa_B **

I encourage you to look into some of the other patient assistance programs listed on the Foundation's Web site to see if one of them may be able to assist you with paying for Enbrel: http://www.psoriasis.org/advocacy/assistance/insurance/programs.php.


You may also find these resources helpful:

1. Georgetown Health Policy Institute has created a guide on getting and keeping health insurance in each of the 50 states. Each guide also has valuable information on a patient’s rights and protections during insurance transitions as well as state-specific financial aid programs. http://www.healthinsuranceinfo.net/index.htm

2.The National Endowment for Financial Education and the Georgetown Health Policy Institute have created three guides together to help patients with insurance and related issues. All three can be found online, http://www.healthinsuranceinfo.net/nefe/

a. Book One, Understanding Private Health Insurance. Topics include:

* What is Good Health Insurance? What to Look for and What to Avoid
* Special Worksheet to Help You Evaluate Your Health Insurance Choices
* Insurance Transitions — What They Are and How to Navigate Them

b. Book Two, Medicare and Medicaid: A Health Care Safety Net for People with Serious Disabilities and Chronic Conditions. Topics include:

* When, Where and How to Apply for Social Security Disability Determination
* An Overview of Medicare Parts A, B, C and D
* Other Places for People with Disabilities and Their Families to Seek Medical Coverage
* Directory of Medicaid Offices for Every State and Territory

c. Book Three, Options for Avoiding and Managing Medical Debt. Topics include:

* Places to Go for Free Health Care
* You Can Negotiate with Your Doctor for a Discount on Medical Care
* Answering Questions about Bankruptcy
* What You Need to Know about Credit Reports and Credit Scores


Alyssa Brown
Advocacy Coordinator
National Psoriasis Foundation
abrown@psoriasis.org
Tel. 503.546.8407
Fax 503.245.0626

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** Originally posted by LoriASoCal **

Too many lawsuits will just make doctors afraid to treat us--they'll have us back on coal tar or trips for Goekermann month long mud wraps.

Couldn't agree with you more.

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** Originally posted by KellyPSA **

I am so sorry you're haqv ing a bad time...but I don't buy your premise...That drug companies are deceitful or lying...The literature that comes with Enbrel, lists every known side effect and rebounding is one of them...It is also the nature of autoimmune disease for it to come and go no matter what treatment you are using.

By way of disclosure, I was on Enbrel for 5 years, it started to be less effective, I stopped in in order to try Humira, had a terrible flare...6 months later I am not as clear as my best years on Enbrel...My joints are not as good as they had been, in the past.

Also by further disclosure, I have had a serious, serious reaction to Raptiva...Hospitals, Nursing Home, Wheelchair, permanent disability...but I still don't blame Genetech. I blame my disease...

As for law suits, I think that drug companies need the room to do research without the fear of huge liability cases from people who might have had the side effect as a part of their disease progress anyway....There is a huge difference between profiteering and deceiving patients and offering patients a possible treatment. The commericialization of Pharmeceuticals has gotten out of hand and Enbrel and Humira and commericals for medications with their rapid final disclosures is the same as Shampoo commericials that tell you that all you need to do to have bouncy full hair is use it every day....Marketing is always trying to sell you something...Since when is it not our indivdual responsibility to education ourselves about the products we buy?

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** Originally posted by debicamp13 **

i have flared after coming off every biologic ive been on...raptiva being the worst, almost being hospitalized......i dont think its the drug companies fault, just our totally messed up immune systems that dont know when to quit..our bodies get used to a certain treatment and they jsut dont respond to the meds anymore......and go haywire in the meantime.......my docs have always told me its not a cure and i cant promise it will work or how long it will work...i am just so thankful to have the months or years of clear skin that i get to have until i move on to the next one.....

maybe you can check into going on a new biologic, im on humira now and am clear after being 80%covered when coming off enbrel...they also have a patient assistance program if you dont have insurance or a high co-pay......
good luck and hang in there!!!

Debi

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** Originally posted by odin7 **

Ah, but a real cure is a one time fix and not an expensive (and lucrative) maintainence drug.................... I wish I knew how much research money was actually being spent on a cure, rather than so many of these biological maintainence drugs.

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** Originally posted by SCCatman **

The way Enbrel works, it should not cause a flair when you stop. One of the few people here who flaired coming off enbrel was grannyfanny, taking a string antibiotic "cured" her for the first time in decades. I think it was Keflex. You might try to get your derm to rx that for you to see if it helps.

Dennis

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** Originally posted by nesielheum **

Ah, but a real cure is a one time fix and not an expensive (and lucrative) maintainence drug.................... I wish I knew how much research money was actually being spent on a cure, rather than so many of these biological maintainence drugs.

I do not know the exact numbers, but answers to these types of questions are one of the purposes of advocacy for this disease. If you wish to get the answers, and be a part of the solution toward finding a cure, here are a few good places to start:
http://www.psoriasis.org/advocacy/action/
http://www.psoriasis.org/advocacy/chd/

There are so many ways each of us with this disease can help to find a real cure, and advocacy is a prime method. Getting the message out can be done in many different forms of correspondence: phone, e-mail, mail, support groups, press, radio, in person, et. al. Personally, I have never been the CHD nor to the Annual Psoriasis Convention, but I appreciate those that have attended, and given our Government decision makers the opportunity to assimilate faces to this disease. Change does not come about easily, but with a concerted effort (some more some less) from us all, I am confident that one day soon, a "CURE" will become a reality.

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** Originally posted by nesielheum **

...It's time to fight these lieing deceptive drug companies. What does everyone else think?

Like most of the others here, I am also not a big fan of lawsuits, however, I think that if a company (drug or other) intentionally lied or decieved consumers, they should be held accountable, and liable for restitution.
An adverse or unwanted reaction to a drug, or in your case a withdrawal symptom may fall into the deception category if you can prove that your doctor, or drug company knew that this would happen, and you were dosed in lieu of this knowledge.
I hope that you feel better soon.

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** Originally posted by hypr004 **

I am so sorry you're haqv ing a bad time...but I don't buy your premise...That drug companies are deceitful or lying...The literature that comes with Enbrel, lists every known side effect and rebounding is one of them...It is also the nature of autoimmune disease for it to come and go no matter what treatment you are using.

By way of disclosure, I was on Enbrel for 5 years, it started to be less effective, I stopped in in order to try Humira, had a terrible flare...6 months later I am not as clear as my best years on Enbrel...My joints are not as good as they had been, in the past.

Also by further disclosure, I have had a serious, serious reaction to Raptiva...Hospitals, Nursing Home, Wheelchair, permanent disability...but I still don't blame Genetech. I blame my disease...

As for law suits, I think that drug companies need the room to do research without the fear of huge liability cases from people who might have had the side effect as a part of their disease progress anyway....There is a huge difference between profiteering and deceiving patients and offering patients a possible treatment. The commericialization of Pharmeceuticals has gotten out of hand and Enbrel and Humira and commericals for medications with their rapid final disclosures is the same as Shampoo commericials that tell you that all you need to do to have bouncy full hair is use it every day....Marketing is always trying to sell you something...Since when is it not our indivdual responsibility to education ourselves about the products we buy?

I read every bit of the literature before starting ENBREL and this is more than a REBOUND flare. I'm 100% - 200% worse than i ever was.

First you say you don't buy my premise that ENBREL is being deceitful. Then you say ENBREL uses sales tactics like "shampoo companies" to sell their product. Which one is it? Are they being deceitful or not?

Don't take too much time thinking about one response because then you'll find yourself with mixed thoughts and contradictions.

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** Originally posted by hypr004 **

hypro

What are you and your derm doing about this flare?

Karen

I don't have a derm currently because this garbage is covering my hands and noone will hire me because of it. No insurance, no income, NOTHING. I use triamcinolone .1% creme and it's a joke just like the rest of them.

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** Originally posted by KellyPSA **

I have been thinking about my position on advertising. I think that in advertising they use the best case scenario to sell their product; and it remains the consumer's responsibility to make appropriate choices. For many, many people biologics have been the only way to get any quality of life.

I think that the FCC should not have ever allowed pharmeceutical companies to advertise prescription drugs in the manner that they have; these commericals tend to give patients only enough information to get them excited about a cure. We need to consult with doctors that actually know how and why these medications work..

I will never buy the idea that drug companies are acting in concert to decieve patients; for many lucky people, the drugs work as they are intended to and people do get well....I will never support huge class action lawsuits that lawyers profit from and clients are lucky to get a free cardiac evaluation, like the Phen-Fen lawsuits. People who got hurt by the drugs ended up with next to nothing, lawyers got rich and the pursuit of a drug to fight obesity was permanently slowed...

I think you are legitmately angry that these particular drug made you sicker than you were. I suffered in the same way from my Raptiva experience....I may never ever work again and I am only 41 years old....After my Raptiva experience, I just had to move on to the next thing...in my case, Enbrel....when it losts its effectiveness, I am on to Humira.....If the big bad drug companies weren't still doing research...I'd still be in a nursing home with 95% of body covered with psoriasis.

In the end it is this all powerful disease, and my unfortunate genes that I blame for my problem.

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** Originally posted by Resist **

It's time to fight these lieing deceptive drug companies. What does everyone else think?

Since you are asking, I have to wonder what your body percentage of coverage was prior to taking the drug. Is it possible the coverage you are now experiencing would have happened anyway, without ever taking that drug? I know with certain drugs bad rebounds do happen, topical steroids for instance. Does that mean we should all take those companies to court.....no.

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** Originally posted by AnnieB **

It sounds like the real problem is that Enbrel WAS working for you and it sucks that you do not have access to it now. But I'm not clear why they stopped helping you, if you are unemployed now. It seems you would be the perfect candidate. I hope you can find some kind of new regimen that helps. There are some ideas in alternative that are cheap to try. Of course, they are mostly anecdotal but the Barney's Formula has some positive reports. And sunlight is good for most folks with P, but it's is gonna be hard to get some as winter approaches.

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