Ampyra Warning

Updated

I have to inform everyone I can about this issue. My doctor wants me to take Ampyra and she handed me the Ampyra Patient Support Services Center Prescription & Service Request Form to read and sign. In Step two the Read and Sign Patient Authorization section there are five reasons for the release and collection or medical data and they are: (1) to establish my eligibility for benefits; (2) to communicate with my health care providers and me about my medical care; (3) to facilitate the provision of products, supplies or services by a third party including, but not limited to, specialty pharmacies; (4) to register me in any applicable product registration program required for my treatment; and (5) to evaluate the effectiveness of AMPYRA's education programs.

This all sound innocent enough until you read the first sentence after part five that says, I understand that my Personal Health Information disclosed under this authorization may be redisclosed by Acorda and is no longer protected by Federal privacy laws.

I pray no one has signed this release. Never sign anything without reading it first no matter who hands it to you. Please tell everyone you know about this.

You can read this for yourselves. The Rx & Service Request Form is located here http:/­/­www.ampyra.com/­local/­files/­Acorda_SRF_V35.pdf

9 Replies

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1

You have to sign so they can diclose your info to the drug company and their support team so they can have access to your insurance, your condition, etc.. It states authorize my health plans, physicians, and pharmacy providers to disclose my personal health information, including, but not limited to, information relating to my medical condition, treatment, care management, and health insurance, as well as all information provided on this form and any prescription (“Personal Health Information”), to Ampyra Patient Support Services Center, on behalf of Acorda Therapeutics, Inc., and its representatives, agents, and contractors (collectively “Acorda”) They are not going to sell it to telemarketers or something. Any time u go 2 a new doctor, get a new specialty drug etc, u have 2 sign one of these so they can have access to your history. I really think your over reacting. I had to sign one for avonex to. It fine. Under HIPPA regulations you have to sign if u want the drug. They arent going to steal your identity.
This is why there is the hippa law.

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2

I understand they need to obtain medical information and talk to the pharmacies but when they say you are no longer protected by Federal privacy laws then I draw the line.

You should be a little more cautious with what you sign.

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3

well i have 2 tell you, when it comes to something that would reileve my symptoms and help in any way possible, i would sign my life away. I hate this disease, and i will try anything. And if it means signing a paper that allows my information to be used in research, you bet I'm signin.

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4

Obviously MS has affected your mind. It is absolute insanity to sign your basic rights away over the possibility of maybe being help in some small way.

I've been on three medications for MS. The first one failed, the second was a test drug that my doctor took me off of it because I flared up four times in a year and the third one seems to have slowed things down some. I wouldn't sign my personal protections away on a possibility when there are other medications I can keep trying.

I pray you get the relief you seek and I hope you have someone more level headed to help you make really important decisions.

Take care,
Tim.

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5


Well Tim, Obviously MS has affected your mind sweetie. My mind is perfectly fine. Just got off the phone with the drug company, and guess what Tim? I am correct. Number one, you do not have to sign that part of the script. You CAN still get the drug. If u decide to sign it, it is for statistical data and research, not to release your personal information. It allows Acorda marketing contact u for your opinions regarding the drug. Nothing more. Number 2 Tim, the first part is, like i said, for HIPAA to protect you as a patient. Allowing the drug company to call your insurance company on your behalf for copays, etc. So there u go Tim. Maybe you should research things before you post something on a site like this and scare patients who are looking for some relief. Maybe you should try it and it would maybe help you with your paranoid thoughts, you never know it might help. Oh, and also, you are talking to a person who has her masters degree in Physical Therapy and works full time, so i am quite level headed and able to speak on my own behalf. Shame on you, and i am done with this now.

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6

Sign your rights away for your protection, how does that even make any sense? I'm on other medication that my insurance covers with no problem so I guess it doesn't. It's ok though because you called the company and they told you what you wanted to hear. That almost sounds like a self reinforcing delusion but that would require you to be a different type of therapist to understand.

It's funny how you claim that I'm the paranoid one when your the only one who leaches on to my post and gets herself in a huff. I've had overwhelmingly positive responses on other groups with thank you and nice catch. Other people even relate there own experiences with what they find on forms that they won't sign.

There is no shame in warning people to be careful and cautious with what they sign. The Clinical Research Manager at my local clinic emailed me and said she 'totally sees my point' and she is going to talk to the company rep the next time she sees him.

I love the people at my clinic, they take care of me. The least I can do is help watch out for them too. And as you well know, if you hand a form to someone and they sign it because they trust you, you then become liable.

My doctor is an MD PhD and her boss is an MD PhD, your masters is impressive but as someone who has consulted with engineers and other PhDs you don't impress me, and I too am done with this...

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7

I have to agree with Timothy here, that people should be aware of this issue.

What such a statement basically means, once you sign it, is that while they are still not allowed to sell and freely share your information, you also CANNOT hold them responsible, if something should happen to it, while they have access to it.

Say if their computer system gets hacked, or something, it leaves you no recourse whatsoever.

While this risk may be worth it, for some people, to try this treatment option, others may not be comfortable with that.

And NO, this type of thing IS NOT included in every privacy paper you sign, when you see a new doctor or try a new medication, otherwise, it would completely negate the federal privacy laws.

Now, please stop any name calling, accusing, bashing or etc.

You are allowed to disagree on the issue and its importance, but such behavior is NOT acceptable.

Thank you, Timothy for your post, you are correct that people should be aware of this, it enables them to make the most informed decision possible about their treatment options.

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8

I can understand what sweet was saying. I have nothing to hide. I am not an idiot, I read what I sign. Timothy had a good point and it's great that someone's going to talk to the co about that. Meanwhile, I started taking Ampyra about 2 weeks ago and both myself and my husband have noticed a difference. In about 2 wks I'll make my decision as to keep taking it or not.

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9

The thing is, sailor, Tim got insulting first.

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