• May 2, 2008 at 5:48 pm

    Dr. T and his legal use of a loop hole in the current U. S patent laws that allows individuals to file “claims” for methods of drug delivery for many common patented drugs has got me really angry.

    That those procedural patents are not valid in some countries outside of the U.S. makes me even more irate…because…Should off-label use of Enbrel treatments as a tool in fighting Alzheimer’s become standard procedure…Others will be able to take advantage of it at a lower price than my loved one.

    I just came upon another relatively rare (but quite fatal) condition whose ‘victims’ may soon be held ransom to what I consider to be Dr. T’s excessive licensing & royalty fees.

  • May 4, 2008 at 8:28 pm

    Noticed a Mayo Clinic article on the use of off-label Enbrel treatments as a tool in fighting Alzheimer’s. At the end of it is a comment section. I’m posting to suggest that anyone wanting to see the value of this off label treatment either proved or disproved should read the article and post a polite comment requesting immediate research at the following link:

    http://mayoclinic.com/health/comments/MY00036_comments/POST=1#post

    Maybe the Enbrel issue will be settled once and for all.

  • May 5, 2008 at 4:01 pm

    I have heard there is a clinic in the Detroit, Michigan area where a couple of doctors are trained by Dr. Tobinick to perform the injections.

    I hope the information helps. I will try to get more information.

  • May 9, 2008 at 6:07 pm

    I don’t know this first hand, but from e-mailing caregivers I learned that there is now a doctors trained in Kentucky, as well as NY, MI, TX, FL, OH and IN, also there are 2 untrained doctors in TX and NJ. If you paid for a consult, they should give you this information. Call them bak!
    I agree with a different conclusion, that the patents did not stop the drug companies from running a trial. They have enough money to pay the royalty fees. They are running trials on a new drug and don’t care about Enbrel even if it’s helping patients. The patents keep the drug companies from “hiding” this new treatment The fees from the patent and his treatment though are too much, and should be lowered if he wants to get htis moving. The drug companies only care about money, i’m hoping Dr. Tobinick cares about the people too and lowers his prices.

    Hope

  • May 12, 2008 at 2:43 am

    Alzhope—I’m not a lawyer and not medically trained…but I will share some opinions.

    I read your post and the sentence “The patents keep the drug companies from “hiding” this new treatment” totally confused me.

    One of the ‘drugs’ mentioned in the Procedural Patent # 20070196375 granted Dr. Tobinick on 08/23/07 is Bapineuzumab. Phase III Clinical Trials are just now getting kicked off.

    The procedural patent says “Golimumab is currently in clinical development by Centocor/Schering-Plough for treatment of rheumatoid arthritis, with potential applications for uveitis, asthma, and Crohn’s Disease.”

    How can someone ‘hide’ a procedure as elementary as a simple injection before the ‘drug’ is even made available to the public?

    The following is a list of the conditions listed in the above patent:”…neurodegenerative diseases, including Alzheimer’s Disease, Parkinson’s Disease, amyotrophic lateral sclerosis; for eye disorders or diseases including, but not limited to, macular degeneration, diabetic retinopathy, sympathetic opthalmia and retinitis pigmentosa; disorders of hearing, including, but not limited to sensorineural hearing loss or presbycusis; central nervous system (CNS) tumors, including tumors of the brain; for other diseases or disorders of the brain, including, but not limited to vascular disorders such as stroke, transient ischemic attack, vascular dementia, and cerebrovascular disease; infectious diseases of the CNS, including viral and bacterial infections; for sciatica, cervical radiculopathy, and other forms of disc-related pain; for low back pain; other diseases or disorders involving the spine, the spinal cord, the spinal nerve roots, the brain, eyes, auditory apparatus, or other structures of the head.”

    I may be wrong but…I have the opinion that instead of protecting anything from being hidden…Dr. Tobinick is attempting to use a loophole in our procedural patent system to set up a ‘network’ and extract a ransom from ‘victims’ of often fatal conditions.

    I feel a great deal of sympathy for those with amyotrophic lateral sclerosis (Lou Gehrig’s disease). I believe that they remain fully cognizant throughout most of the wasting process. They won the ‘condition lottery’…There are only about 30,000 cases in the US. Their research budget is limited. To have a elementary procedure ‘claimed’ before a drug is even discovered seems totally unfair.

    [/b]

  • June 4, 2008 at 11:38 pm

    I have been doing research for a close friend for days it seems.
    Bottom line, in my view, and from what I have been able to glean,
    I like others feel that its strictly about the $. Dr. T. also I am told is allegedly to be very “lawyered up. “. I have also found out from other sources, including medical, that this isnt rocket science, and perispinal injections are done everyday. There also is some question as to how the patents can be enforced, its like someone having a patent on epidurals?? But nobody wants to defend an expensive lawsuit. Mr. Lee was obviously right on track finding someone else to do it..not that difficult. In my opinion sooner or later someone will be doing it across the border where the long arm of American Litigation can’t reach and hopefully by someone who is indeed patient sympathetic and the cost will come down considerably. Hopefully sooner than later.

    My view only.

  • July 1, 2008 at 9:57 am

    I have read throughout article on” Enbrel Treatment for Alzheimer’s”, however the way you have put it across was really intelligent skericheri. Although the language you used was a little technical I was able to get some part of it. Incase you want people to leave more comments; I suggest you make it more interactive by asking more questions in your article.


    Gary Bristow
    Addiction Recovery Arkansas

  • July 24, 2008 at 11:12 pm

    My Mom is getting the treatments, although we are at a standstill right now since she had major surgery a week ago. I am anxious to start the treatment again, but need to wait till the staples are out of her stomach!

    The “risks” have been non-existent for us. Her physical recovery from her surgery has been great — no sign of a weakened immune system – She improved after the first few injections, then was maintaining as long as we kept them up weekly. She had been in a quick decline and this treatment stopped it, I am so grateful to have her back again!

    We started the treatments in March of this year at Dr. Tobinicks office. There are two sides to every story, and although I myself wish it was less expensive, I realize how much time and money this Exceptional Man has spent on this treatment, with barely any compensation for many years. He won’t give his patients placebos, he can’t. He knows it’s working and refuses to give up. The talk about patents started up a few months ago, and some people cannot get that out of their heads. But before too many people get pushed away, I need to voice the other side of the coin.

    Patents are there to protect doctors and patients. The fact that he has many patents means that he is a scientist. He offered his treatment to Amgen long ago, then to many others. They would not accept his “TNF” theory. They thought he was wrong, and “muddied” his name along the way, pushing doctors away from a treatment that could have save others. His patents are not valid for Clinical Trials, they are not valid out of the U.S. So patents did not stop anyone from doing a trial. Disbelief is what stopped this from helping millions of people…not patents. My goal, instead of just putting the man down at every turn, has been to get the word out to as many people as possible, and if they have the resources, to get this treatment for their loved ones as soon as possible. My family is pulling together to make this accessible for us, many of you can too. The number of trained doctors is growing. If you call Dr. Tobinick’s office, they will give you the name and number to the closest doctor to you — no charge. My other most important goal is to get FDA approval so that insurance will help pay for it, and to spread the word so that someone finances a clinical trial. Amgen has refused, and in my opinion they are the culprits who put a stop to this, thinking they could do better by partnering with Wyeth and Elan researching another drug — as I said, just my opinion. I believe they are the ones who kept this treatment down, and made Dr. T go about it the way he did. Clinical Trials cost Hundreds of Millions of dollars. A doctor in a private practice doesn’t have that kind of money. He chose to continue treating patients, publishing his work and going to conferences. Amgen’s statement about the treatment includes lies. Dr. Tobinick’s work was published in peer reviewed journals, and he did present his work at appropriate conferences, including the ICAD 2006.

    Beyond all the arguements on whether he charges too much or whether he “did it wrong” doesn’t really matter to me anymore. If you can’t afford it or it’s geographically unattainable, then please know that a few of us are doing everything in our power to get this spread throughout the world so that your own doctors will agree to do the treatment, and to get approval so that insurance will help pay for it. Bring your doctors the study, and all proof you find about the validity of this…don’t take no for an answer. Tell them to get trained…it will save many lives if they do.

    I have a different opinion of Dr. Tobinick, and I understand why he does what he does. He has been put down and attacked for years, but he keeps treating patients…not for money, but because they are getting better. I don’t know how he takes all this slander, but he does, and because he didn’t quit, my Mom laughs and sings again. Thanks Dr. T.

    Felicia

  • July 26, 2008 at 6:10 am

    Felicia—You may disagree with me…but…On the whole, I believe that I quite fair in my presentation concerning Dr. T and the potential value of Enbrel as a tool in fighting Alzheimer’s on this thread.

    Voicing an opinion is not slander. Every human being has that right. It is truly unfortunate that Dr. T’s practices have caused so much controversy that they appear to have slowed down acceptance of the basic concept by the Alzheimer research community. It is nice to see the situation slowly improve.

    gbristow—I’m sorry for getting technical. Not being trained in science I’ve spent a great deal of time confused while attempting to gather information. That confusion may have transferred itself to my typing fingers.

    Getting comments was not my goal when I started this thread. Soliciting support for research into the value of Enbrel as a tool in fighting Alzheimer’s was. In attempting to do this, I tried to present the facts in a way that someone of average financial status would not feel guilty if they decided that it was not prudent to mortgage the family homestead, cash in their life savings or stand in the street with a sign that read: “Will work for perispinal Enbrel injections”.

    It is evident that as the thread grew…My discontentment over the practices of Dr. T did also. Just to fill everyone in on my current status…

    Although I believe that Enbrel has value as a tool in fighting Alzheimer’s I have not made any move to get in-network or out of network Enbrel treatments for my partner. We’re not rich. His decline has been relatively slow. I’ve formed a mental picture of the point where I will get out my paperwork and go looking for an out-of-network source.

    Support for additional research into the concept is growing. Paul Harvey mentioned Enbrel & Alzheimer’s in a radio show…The Alzheimer Association appears to have softened their stance. Assuming Amgen eventually gets off of their duff and requests permission for a clinical trial from the FDA, some of our loved ones may live long enough to eventually take part in one…but…I suspect that during their lifetime public funding for Enbrel injections will be nothing but a dream. I hope that a more low cost way to slow down or stop progression is found quickly.

  • October 9, 2008 at 2:59 am

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  • October 13, 2008 at 4:50 am

    Unless Amgen gets on the stick and announces clinical trials (They are the only one allowed to petition the FDA for the right to hold them)…It looks as if Dr. Tobinick is the only entity attempting to reposition Enbrel.

    In some ways I cannot blame Amgen for their reluctance. In my opinion Dr. T. may have made some poor (or questionable) choices that appear to have cast doubt on his credibility. Enbrel has been a moneymaker for Amgen. They have taken considerable heat over off-label usage and may be reluctant to set up clinical trials without collaborating evidence from ‘impeccable’ independent sources.

    I imagine filling out grant forms is tedious…but…In my opinion…If Dr. Tobinick has not already done so…I think that he should approach sources of Alzheimer’s research funding with pen and hat in hand. With some ‘business concessions’ (that help to bring down the cost of in-network treatment) on his part, I believe they might provide a willing ear.

    I think that the choice is his. If he is happy with his current level of ‘business’ and recognition, he will do nothing but publish press releases, continue to make the ’speaking circuit’, produce more videos and hope for the best. If he hopes for timely scientific recognition and perhaps a place in medical history as a pioneer in the fight against Alzheimer’s, he may have to make some changes.

    In the past months I have learned more about Enbrel for Alzheimer’s. It is definitely not a cure. I don’t know for certain that progression of AD is stopped (or even slowed). I’ve watched Dr. Tobinick’s exciting video’s showing dramatic changes…but…Most actual caregiver reports fall short of that mark. (Some caregivers have started and discontinued Enbrel treatments for this reason.). At this moment in time…because it is expensive and still relatively untested…I’ve come to the conclusion that the hope that Enbrel injections may help Charlie might more valuable to me than the potential results.

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