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  • Cut off from Janssen Patient Assistance Program for Duragesic

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    Old 09-07-2003, 12:32 AM   #1
    SFangel
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    Unhappy Cut off from Janssen Patient Assistance Program for Duragesic

    Hi,

    I posted this in the Pain Management Board but I did not get a reply, so I am posting it here.

    Many of you have been on the Janssen Patient Assistance Program (PAP) for Duragesic for several years. Does Janssen allow people to use their PAP that long?

    I am also on their PAP. After the first 6 months on their PAP, I recently received a letter from Janssen asking me to sign an authorization to access my medical records as a condition of receiving free Duragesic from their PAP. Have you received this letter?

    I feel like they want to see my medical records because they want to find a reason to cut me off from their PAP. I feel betrayed. If they do not want to provide free Duragesic anymore, they can just say so. I will then switch back to Oxycontin and get in their PAP.

    I do not understand why Janssen wants access to my medical records. Are they also trying to challenge my doctor's prescribing fentanyl patches for me?

    I am sure Janssen does not ask to access the medical records of people who pay for their patches or have medical insurance. Are they trying to wage a war against poor people like me?

    Thanks.

     
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    Old 09-08-2003, 08:28 PM   #2
    MJFrog1
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    Hi,

    I'm truly sorry you are having a difficult time with getting your Duragesic patch through Janssen PAP.

    From personal experience with filling out PAP applications with Janssen,it seems they are getting more particular with making sure there is a valid reason for taking the Duragesic and unfortunately, taking your word for it, or the doctors doesn't work anymore.

    Requesting records may seem intrusive, but you can limit what the company can see because of the new privacy laws (HIPAA).

    I don't think Janssen is waging a war against you, I just think they want to be sure that the people who really need it (like yourself) get it and the patient's that are abusing it, don't.

    I'm not sure I provided much help but hopefully provided some insight into the problem.

    Hope things go well and that you continue on your Duragesic patches (they do work wonders!)

    Sue

    [This message has been edited by MJFrog1 (edited 09-08-2003).]
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    Old 09-08-2003, 09:23 PM   #3
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    Hi, Sue

    Thanks for your response. It really is helpful.

    After Janssen gets a patient's medical records, do they have their own doctors look at them and decide whether Duragesic is appropriate for them? I think this is really outrageous. How can they decide if Duragesic is appropriate or not for a patient when they are not even that patient's doctor? Don't they realize a doctor would not prescribe Duragesic for a patient if he/she does not need it?

    Besides that, you may know that doctors do not like to prescribe schedule 2 drugs (such as Duragesic) so if they prescribe them, it means the patient really needs them.

    If Janssen does decide to cut me off from their PAP, I will be more than happy to go back to Oxycontin because this drug is also very effective. I just hope the Oxycontin manufacturer does not have the same rules as Janssen.

     
    Old 09-09-2003, 07:31 PM   #4
    MJFrog1
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    Quote:
    Originally posted by SFangel:
    Hi, Sue

    Thanks for your response. It really is helpful.

    After Janssen gets a patient's medical records, do they have their own doctors look at them and decide whether Duragesic is appropriate for them? I think this is really outrageous. How can they decide if Duragesic is appropriate or not for a patient when they are not even that patient's doctor? Don't they realize a doctor would not prescribe Duragesic for a patient if he/she does not need it?

    Besides that, you may know that doctors do not like to prescribe schedule 2 drugs (such as Duragesic) so if they prescribe them, it means the patient really needs them.

    If Janssen does decide to cut me off from their PAP, I will be more than happy to go back to Oxycontin because this drug is also very effective. I just hope the Oxycontin manufacturer does not have the same rules as Janssen.
    Honestly, I really don't think the doctors at Janssen can over-rule a doctor's reasoning for prescribing Duragesic. They may have the medical records to verify the need based upon your medical condition, (and how long you've taken it and that you still have the condition that requires you to take it) but to tell the doctor 'your patient does not need it,' is something I've never seen and is stupid.

    I don't think they are deciding if it's right for you, it may also just be a quality control thing. Perhaps periodically they need to verify certain aspects of the patient assistance program. There could be many reasons. Dealing with Janssen several times, they seem to be fairly easy to work with. The only thing that seems to be a pain for us is making sure ALL the paperwork is there when the application is sent in.

    I've worked in health care for 17 years and most of the physicians I have encountered are very leary about writing for schedule II, mainly for fear of reprisial from state medical boards. Sad, but true.

    I'm glad that Oxy works for you. Some doctors have no idea what it's like to live in pain, since pain is so relative. I have a herniated disc C5,6 and sometimes the pain is so bad, but I feel like it's wrong to ask for a narcotic for fear of being labeled a drug addict. It's just a sterotype and know myself better than anymore and if I'm in pain, I want at least some relief, ya know?

    I'm glad I could help you.

    Sue
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    Old 09-10-2003, 12:30 AM   #5
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    Hi, Sue

    Thanks for the information and for helping me feel better.

    I was just worried that I would be cut off from Janssen PAP because I do not want to lose the pain relief I get from Duragesic. This worrying for such a long time could have been avoided if Janssen had explained to Duragesic PAP patients why they want to access their medical records. It is only normal for these patients to wonder why Janssen wants to see their records.

    I am using Duragesic for severe chronic pain caused by Reflex Sympathetic Dystrophy (RSD). Because there is not yet a cure for RSD, I expect to use Duragesic for a very long time, possibly for the rest of my life.

    I have never had a problem with paperwork for the application for Janssen PAP. My doctor's office just faxes to Janssen PAP the completed and signed application form accompanied by a cover letter written and signed by my doctor. This cover letter details my situation with chronic pain, the condition that has been causing it, as well as my inability to pay for the med.

    Out of more than 30 doctors, I have found only 2 doctors willing to prescribe schedule 2 narcotic painkillers such as Duragesic.

    I believe that pain relief is a right, not a privilege. If getting this pain relief means using narcotic painkillers, so be it. I also believe that a legitimate pain patient taking narcotics for pain relief are not likely to get addicted. The risk is about 1% according to some studies.

     
    Old 09-10-2003, 07:39 PM   #6
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    Hi, Sue

    One of my doctors, a neurologist, accused me of having secondary gain issues and wrote this in my medical records. When Janssen gets my medical records, they will see the secondary gain accusation from my neurologist. Will Janssen cut me off from their PAP if they decide to believe this false accusation of secondary gain?

    I explain below why the neurologist accused me of having secondary gain issues.

    The doctor who accused me of having secondary gain issues is a neurologist. He is in no way qualified to diagnose me as having secondary gain issues; only a psychologist or psychiatrist are competent to make such a diagnosis.

    This neurologist accused me of having secondary gain issues because he does not like my using a narcotic painkiller as strong as Duragesic even though I have severe to excruciating chronic pain. He is biased against narcotic painkillers. He would rather see me suffer than get pain relief just because he does not like narcotic painkillers.

    Besides controlling my severe to excruciating chronic pain, Duragesic has been masking the other symptoms of my RSD. Because of this, this neurologist could not see any RSD symptoms in my left knee/leg. This led him to believe I do not have RSD.

    I was a pedestrian struck and injured by a car while crossing the street on a crosswalk. This neurologist assumes I am creating my pain to get more money from the person who injured me.

    If Janssen cuts me off from their program because of the neurologist who accused me of having secondary gain issues, I will not hesitate a second to sue this doctor for medical malpractice as well as for causing me pain and suffering.

    I know from experience that Oxycontin works extremely well for me. I do not think the manufacturer of Oxycontin will ask for my medical records, so they will not find out about the secondary gain issues accusations that were made against me without a valid reason. I will switch back to Oxycontin in a heartbeat if necessary.

    There are many other meds my doctor could prescribe for me if Janssen cuts me off from their program. I could try MS Contin, Kadian, Dolophine, etc. The manufacturers of these meds have a program to help people who are unable to pay for their meds and who do not have health insurance. They also probably do not ask for patients' medical records, so they will not find out about the false accusations of secondary gain issues.

    Thanks.


     
    Old 09-14-2003, 07:03 PM   #7
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    Hi,

    Sorry for the delay in responding!

    The doctor wrote that in your medical records???? Wow. If Janssen does believe the secondary gain issue, you can always write and explain, in your own words, your own version.

    We just received a new renewal form for a patient on Duragesic and it had an extra form in the 'packet.' It was the form you are describing about releasing information and/or medical records if necessary. I assume it has something to do with that stupid privacy law (HIPAA) that went into effect April 14, 2003.

    As we've talked about before, so many doctors are careful to prescribe narcotics. Not sure why, but I'm assuming state medical boards are especially stringent.

    I've never taken Oxy for my herniated disc, but I have tried the Duragesic patch, beginning at 25mcg, then to 50mcg, but it did not help. Getting the "glue" from the patch off my skin was a pain in the butt so, I went back to using Darvocet N-100 and they work well, if not better.

    I hope things go well and that you stay comfortable.

    Sue
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    Old 09-17-2003, 01:54 AM   #8
    SFangel
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    Hi, Sue

    Are you Sue from the Cincinnati Sportsmedicine Research and Education Foundation?

    Thanks for the suggestion about writing to Janssen if they decide to cut me off from their PAP because of the false "secondary gain" accusations. I wonder when Janssen is going to cut me off from their PAP. It will not take them long to find out about the secondary gain accusation.

    I have some problems with the "glue" from the patch but my worst problems are rash and nausea/vomiting, which have been going on for a year.

    My pain relief with Duragesic is excellent but I am having a lot of problems with falls because of my partially torn ACL ligament. I feel so angry and depressed by these falls that I feel like tearing my ACL completely so orthopedists will not have any excuse not to reconstruct it.

     
    Old 09-20-2003, 10:29 PM   #9
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    Hi!

    No, sorry I'm not that person.

    I hope that Janssen doesn't cut you off of their PAP progam because the Duragesic is working so well for you.

    I never had nausea/vomiting from Duragesic, but did have urinary symptoms such as hesitancy, which subsided after I stopped the patch. Have you tried any anti-nausea meds such as phenergan?

    Sorry to hear about your falls. I'm assuming the orthopod won't do the ACL reconstruction without a complete tear? I would think if it's causing that many falls then something needs to be done, such as surgery.

    Hope you are feeling better today!

    Sue


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    Old 10-14-2003, 04:41 PM   #10
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    sfangel what happend with patches did you give med. records

     
    Old 09-17-2004, 08:28 AM   #11
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    Re: Cut off from Janssen Patient Assistance Program for Duragesic

    Hello,
    I noticed your post asking about input from other readers about Janssen's patient assistance program for Duragesic. As a patient that has been on the program for close to two years now I thought I'd share what I've learned through my own personal experiences.

    I don't know if you are aware of it yet but Janssen Pharmaceutical requires patients who are on the patient assistance program for Duragesic to re-apply for an extension every six months. I was told that this goes for everyone who wishes to continue on the program. Once the paperwork has been filled out by the patient and the doctor transition into the next six months usually goes very smoothly.

    Just fill out the Janssen patient assistance form to receive assistance with Duragesic patches. If your doctor hasn't received the paperwork to reapply, I suggest you go to www.Duragesic.com and ******** the application form to print, fill out and hand carry to your doctors office. Once he fills out his portion of the form his nurse can fax it into Janssen. The number for their fax is on the front of the form. Please remember the application forms have to be signed on both the top page and on the second page as well. I takes approximately 72 hours to be re-approved so I suggest you mark the dates on your calender so you can have the forms ready to go before you run out of patches.

    Just because Janssen requests additional patient medical information I don't particularly think it has a bearing as to whether or not you're approved whether initially or re-approved into the program. I've been on the program for some time and have never experienced any problems whatsoever as long as I re-apply every six months.

    As a responsible manufacturer and distributor of Duragesic I believe they have an obligation to themselves and the medical community both morally and ethically so see that these medications are properly dispensed in accordance with their established guidelines. All in all the Doctors do a pretty good just of seeing that they are properly prescribed however I don't think that releases them from their responsibilites as well.

    Considering the added expense of Duragesic patches compared to what we would otherwise have to pay for them, the alternative of possibly having to go without pain meds or be stuck having to take hadsfull of pills with all their nasty side effects, I personally am more than happy to provide them with access to my chart. If it means it may help to serve to help others who might also benefits from it's use why not?

    If access to my chart might help others in the future then I say why not. It isn't like we have to worry about drug companies stealing our identities or anything. Our doctors are the ones who prescribe the medication and along with pharmacists are ultimately responsible for it's proper distribution not the drug companies. These folks work hard serving as our personal health teams so why shouldn't we grant them access.

    It's a small price to pay to receive hundreds of dollars worth of good effective pain medications that we have to go without had it not been for their compassionate programs they've set up for the benefit of those in need.

    God Bless You all and Best Wishes!

    RooRouster

     
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