This Is MS Multiple Sclerosis Knowledge & Support Community

Interesting info from an other messageboard.

MS ActiveSource and MS Patients For Choice

In the next week or so, people can call MS ActiveSource at 1-800-456-2255, give them a ZIP Code, and they will be able to provide contact information for a couple of nearby TOUCH-enrolled neurologists and infusion centers. I was told ten days ago that this was being put in place, but it is still not quite ready. Today, I received an email from my contact at BIIB explaining the delay:
The customer service team followed up after our conversation and do have this process near completion. Because everything takes place in a very controlled environment for Tysabri, IT programs need to be written and checked, SOPs need to be developed and implemented, and training needs to take place. This take some time. However, please rest assured the team is working on it actively to assure that this service is available to patients interested in locating a physician. At present, we do have a process to help identify infusion sites for patients who have been enrolled.
As soon as this is up and running, we will alert this board, and many of the MS boards, that this service is available. The TOUCH enrollment process is proceeding, with approximately 20 sites being enrolled every business day.

In the meantime, we are working on getting a list of TOUCH-enrolled infusion sites, many of which (per Neuro's comments earlier) are the very MS centers that are prescribing Tysabri, up on the www.MSPatientsForChoice.org website. Thanks to the significant efforts of several members of this board, we should be able to have Google links that will show the precise location of each infusion site for every part of the United States (EU patients are still on their own . . .). Thank you to all who are assisting with this effort.

Assistance to MS Patients with Unduly Burdensome Insurance Co-Payments

Some insurers are requiring co-payments of as much as ten percent (10%) of the total cost of Tysabri and the infusion, approximately $300 or so per infusion (about $4,000 annually for the typical 13 infusions). Most co-payments are lower. We are working with Biogen in an effort to reduce these co-payments as much as possible, and programs have been set up to assist MS patients who are unable to afford large co-payments. Our initial goal is that the Tysabri co-payments should be no higher, as a percentage of the total cost, than for the CRABs.

If you find your co-payment unduly burdensome after you have been enrolled in the TOUCH program and have been approved for insurance reimbursement, ask your case manager at MS ActiveSource (1-800-456-2255) to direct you to the various assistance programs that have been set up.

If you have problems, contact www.MSPatientsForChoice.Org at admin@mspatientsforchoice.org and we will do what we can to provide assistance. We are continuing to consider converting MS Patients For Choice to a 501(c)(3) nonprofit organization (so that donations are tax deductible to the extent allowed under IRS laws and regulations -- consult your tax advisor), and then do some fund raising to assist MS patients with their co-payments.

For those of you who post on the various MS patient websites, I encourage you to post this information.

Thanks.
LovesJohnDory

Better,

Wouldn't the fastest and easiest way to help relieve the huge expense to MS patients be to encourage Biogen/Elan to reduce the unbelievable cost for Tysabri?

With you being an investor in Elan, perhaps you could contact them and make this suggestion in the interest of MS patients everywhere.

Thanks.

Harry

From another message board

Financial Assistance for MS Patients

Here is some information for MS patients on getting financial assistance with the expense of Tysabri, and for those who want to make a tax deductible donation to assist MS patients.

For MS patients, you must first qualify for Tysabri and get enrolled in the TOUCH program through a TOUCH-enrolled neurologist. If you do not have a TOUCH-enrolled neurologist, within the next few weeks Biogen's MS ActiveSource program (1-800-456-2255) will be set up to give you several nearby TOUCH-enrolled neurologists organized by ZIP Code. Once you have been examined by a TOUCH-enrolled neurologist, obtained your required baseline MRI and have been enrolled in the TOUCH program, you will be assigned a Case Manager by Biogen through their MS ActiveSource program. The Case Manager will assist you and your neurologist with insurance reimbursement issues, including insurance co-payment assistance or with getting free Tysabri if you do not have insurance.

Co-payment Assistance:

While MS Patients For Choice is getting itself organized as a 501(c)(3), there is an existing organization that can assist MS patients who need assistance with Tysabri co-payments, the National Organization for Rare Diseases.

Here is the contact information:

NORD MS Premium /Co-Payment Assistance Program
Conditions:
Multiple Sclerosis
Contact:
1-800-634-7207

NORD MS Medicare Co-Payment Assistance Program
Conditions:
Multiple Sclerosis (MS)
Contact:
1-866-924-0100

Free Tysabri for the Uninsured and Under Insured:

Biogen may be agreeable to making free Tysabri available to those patients who are uninsured and under insured. Work with your Case Manager at MS ActiveSource to pursue this route.

How Others Can Help:

NORD is in discussions with Biogen about setting up a fund specifically for Tysabri co-payments for privately insured patients. However, it is against the law for such a fund to be set up specifically earmarked for Tysabri for Medicare and Medicaid patients, and most drug companies are reluctant to contribute to a general fund for MS patients as those funds can be used for the competitors' drugs (who may not be making similar contributions). However, individuals can make contributions that are earmarked for co-payment assistance for a specific drug, so here is a link to the NORD website to make such a tax deductible contribution:

http://www.rarediseases.org/helping/donate

Here is some information for MS patients on getting financial assistance with the expense of Tysabri, and for those who want to make a tax deductible donation to assist MS patients.

I thought that I had seen almost everything when it came to the marketing/sales pitches for Tysabri!!

But asking for the public to give tax deductible donations to assist MS patients so they can help pay for a drug that is ridiculously over-priced!!

Geez Better, I guess there's no limit to what will get posted to get your Elan investment into the black ink!!!

Harry

I just posted the info re: the listing for the certified infusion centers nationwide available at http://www.mspatientsforchoice.org/, and also a questionnaire for Tysabri users on my Blog: http://lauren-livingwithms-aolcomlglbgl ... gspot.com/. We ARE trying to help each other.

But asking for the public to give tax deductible donations to assist MS patients so they can help pay for a drug that is ridiculously over-priced!!

Harry, I think your remark about asking the public to donate in helping MS'ers with their ins. co-pays was waaaaaaaaaay out of line. Many people care about the less fortunate and are willing to give donations to help us patients. In addition, it's a tax deduction for them.

I have always respected your posts and have told you that before. I know you aren't "hot" on Tysabri or ins. co's, or the pharm co's...but please, don't take your anger out on those trying to help us MS patients, and please respect the enormous effort we have made thus far, please?

Thank you.

Lauren

Lauren,

Harry, I think your remark about asking the public to donate in helping MS'ers with their ins. co-pays was waaaaaaaaaay out of line. Many people care about the less fortunate and are willing to give donations to help us patients. In addition, it's a tax deduction for them.

I'm sorry that you feel that way but my intent here was not to berate those who give to charities, non-profit organizations or to help those in need. My dismay was towards my perception of the intent behind the message where it was included.

Here we have Tysabri which is going to cost the user (insurance company) anywhere between $3500-4000(perhaps even more)each month for an infusion. In my opinion that is an absolutely ridiculous amount of money for this drug which had its price raised because Biogen/Elan screwed up so badly in introducing it in the first place. Did they absorb the additional cost of having it off the market for over 18 months and now special monitoring being required? Not a chance....they simply passed this extra cost on to the users! Even the copays are going to be beyond many potential Tysabri users.

So what does Better post...a long message about how to get assistance in paying for this horribly overpriced drug which includes encouraging people to donate to MS patients wanting Tysabri and saying that it is tax deductible at the same time! He would love to see every possible person on this drug because he is an investor in Elan and let's have people make tax free donations so he can profit even more!

I will support anyone trying to overcome the problems that MS patients endure and have done so many, many times for several years. But when someone is trying to profit from this disease and posts messages to get people to help his cause, I'm afraid that I will draw the line.....and that's why I made those comments.

Harry

Harry, I respect you and you know that I do, however, the bottom line is the patient, period!

For you to get upset with:

So what does Better post...a long message about how to get assistance in paying for this horribly overpriced drug which includes encouraging people to donate to MS patients wanting Tysabri and saying that it is tax deductible at the same time! He would love to see every possible person on this drug because he is an investor in Elan and let's have people make tax free donations so he can profit even more!

Who friggin cares??? It is the patient that will benefit! In addition, donations to NORDS as listed in his "long message" do not benefit the stock holder in the company directly, it is the patient that is suffering from MS that benefits first and foremost, as it should be!

I truly understand your frustration with the cost of the infusions, and the lack of med. coverage in covering the cost in full, but again I say Harry, who friggin cares? As a MS patient in financial need...I'll take the help where its offered, as long as I don't have to stroll the streets in my w/c running "tricks" to make the money needed for the infusions for Pete's sake.

Might I suggest you or anyone else who has a problem with better's post, put your/their "compassionate hat(s)" on and see past the messenger to the message of helping the patient in need instead.

Most sincerely,

Lauren

Lauren,

msladyinca wrote:Harry, I respect you and you know that I do, however, the bottom line is the patient, period!

I agree and if anyone else on this forum would have posted that message in the interest of the patient I would not have said a word. But that message by Better, in my opinion, had nothing to do with patient interest but potential self profit interest .

Who friggin cares??? It is the patient that will benefit! In addition, donations to NORDS as listed in his "long message" do not benefit the stock holder in the company directly, it is the patient that is suffering from MS that benefits first and foremost, as it should be!

Well Lauren, I care! I was under the impression that ThisIsMs is a forum where people come to learn and assist each other when it comes to MS. It is not a place for people to come and only post press releases dealing with a particular drug in order to encourage its sales. Better has never participated in or offered anything to the readers other than mostly financial press releases on Tysabri. If I thought that he was genuinely interested in helping MS patients with this disease I would again not have said anything.

Might I suggest you or anyone else who has a problem with better's post, put your/their "compassionate hat(s)" on and see past the messenger to the message of helping the patient in need instead.

Sorry Lauren, I am as compassionate as anyone towards the plight of the MS patient and I continue to help others besides my wife cope with this disease. But I will not ignore someone who uses this forum to try and help their own personal monetary benefit. You and others may not agree with me on this and that is your right. But please don't try and change my opinion on this one because it won't change.

Now in the interests of the other readers, let's please leave this difference in opinion between us alone and move on.

Thanks.

Harry

Harry,

I can't believe my eyes when I read your messages.

I agree and if anyone else on this forum would have posted that message in the interest of the patient I would not have said a word. But that message by Better, in my opinion, had nothing to do with patient interest but potential self profit interest .

The reason for my interest for Elan is because my mother has Alzheimer disease, and because Elan and Wyett do the most promising research against this terrible disease.. I have also a friend with MS and also against this disease Elan is, together with Biogen, busy with the most promising research. This way, in a negative view usual for you, you can describing this as 'self profit interest'

So what does Better post...a long message about how to get assistance in paying for this horribly overpriced drug which includes encouraging people to donate to MS patients wanting Tysabri and saying that it is tax deductible at the same time! He would love to see every possible person on this drug because he is an investor in Elan and let's have people make tax free donations so he can profit even more!

I have done a contribution for the MS patients to testify at the March 7, 2006 FDA Advisory Committee hearings for Tysabri.
I also saw the 2 days of the hearings live (video conference), the testimony of the patients included, and I was very moved. Someone who has seen the testimony by Lauren and many other patients , understand how important Tysabri is for MS patients.

The reason for posting that message is this question from LovesJohnDory (David). .

Note: please post this information on MS Patient websites, and email it to MS patients you know who may find it useful, and to those who may wish to make a tax deductible contribution to assist MS patients.

LovesJohnDory

He's a very nice man who helped organize MSpatientsForChoice

Well Lauren, I care! I was under the impression that ThisIsMs is a forum where people come to learn and assist each other when it comes to MS. It is not a place for people to come and only post press releases dealing with a particular drug in order to encourage its sales. Better has never participated in or offered anything to the readers other than mostly financial press releases on Tysabri

During 2004 and later, at reading several MS boards, I saw that nearly always the same person conducted the high word. In a crusade against Biogen, Elan and Antegren, these messages were always very negative. Some of the uncountable examples

- In fact, I was told today that there is a real concern .(for Tysabri) about efficacy beyond 18 months

- I have no way of confirming this latest information so you can call it rumor, innuendo or whatever you want but....further review of Tysabri trial patients has revealed 22 cases of melanomas!!

- And now there is rumor of additional melanoma cases among the Tysabri users

- The comments that I have heard about Tysabri are that it will be quite some time before it comes back...if ever

- Now, at the recent AAN conference, some attendees are supposedly saying that the general consensus coming from there is that Tysabri won't be back for another 10 years!!! And the PML experts there suggested that it was indeed Tysabri that caused the PML.

When I read this message from an MS patient.....

- I'm sick to the stomach of HarryZ constantly posting the same stuff on Tysabri. You must have posted the same anti-Biogen / anti-Tysabri posts a thousand times.

......I can not can understand that you absolutely show no empathy for the feelings of the MS patients which read this MS board, and you only write your own vision, based on rumours and distorted truths. I see that you found your master now, Lauren. The messages from Lauren, which I highly appreciate, relies on known facts, and not on assumptions or rumours.

I can understand that some persons are suspicious in the presence of new medication, and that you warn MS patients for possible dangers. But when I saw that each information of you on Tysabri was always negative, I was so irritated that I started to post messages from neurologists, virologists, Elan/Biogen, and also press releases on Tysabri

Better has never participated in or offered anything to the readers other than mostly financial press releases on Tysabri

The reason that I post little personal messages is because I'm not an MS patient and also because English is not my mother language, and my English writing skills are rather poor.

Geez Better, I guess there's no limit to what will get posted to get your Elan investment into the black ink!!!

I have already posted several messages which were certainly not positive for Tysabri and Elan/Biogen . A couple examples

- Biogen Idec, Elan Suspend Use of Tysabri After Fatality in Clinical Trial

- Patient information. patient-1 Case 1: Confirmed

- Elan, Biogen Confirm Second Patient Who Used Suspended MS Drug Has Contracted Rare Disease

Given the terrible disease which my mother and also my friend has, and Elan is my only hope that perhaps just in time there's an active treatment available, I have bought some Elan shares at 2 dollars/share. Thus I have at least the feeling that I contribute in the development of their medications and that there is still a future for my mother, my friend and all the patients worldwide with Alzheimer desease and MS.

If there are however several members that find that my messages are superfluous, irritatingly and useless, then this is my last post on this MS board.

I wish Amelia & Garry, Ian, Lauren, Lee, Rebekah, Ronny, the spouse of Harry, and all the other MS patients of this MS board a hopful future and the very best in a successful treatment which pleases them best.

better2gether

Better.

I can't believe my eyes when I read your messages.

At least I have now got you communicating beyond press releases!

The reason for my interest for Elan is because my mother has Alzheimer disease, and because Elan and Wyett do the most promising research against this terrible disease.. I have also a friend with MS and also against this disease Elan is, together with Biogen, busy with the most promising research. This way, in a negative view usual for you, you can describing this as 'self profit interest'

Up until this message Better, you have never taken part in any kind of discussion on what you have stated above. That's all we have ever read from you is quoted presses releases, mostly relating to the financial aspects of Tysabri. You yourself have stated that you are an Elan investor so when you combine your posts and that bit of info, it makes one wonder just what your intent may be. Please take part in these discussions and offer you opinions because the more ideas, the better the information flow.

So what does Better post...a long message about how to get assistance in paying for this horribly overpriced drug which includes encouraging people to donate to MS patients wanting Tysabri and saying that it is tax deductible at the same time! He would love to see every possible person on this drug because he is an investor in Elan and let's have people make tax free donations so he can profit even more!

Take your posting history over the past couple of years, add to it the fact that you are an Elan investor, then write a message telling everyone how they can get assistance to purchase this drug or make donations to those MS patients who can't afford to purchase it.... is it surprising that I had the perception that your sole intention was for your personal financial gain only? If I am dead wrong on this then I offer you my sincere apologies...if I'm not, well.........

I have done a contribution for the MS patients to testify at the March 7, 2006 FDA Advisory Committee hearings for Tysabri.
I also saw the 2 days of the hearings live (video conference), the testimony of the patients included, and I was very moved. Someone who has seen the testimony by Lauren and many other patients , understand how important Tysabri is for MS patients.

I am not questioning the desire for anyone to try and get Tysabri. Biogen has certainly contributed to that mess. But your non-participation in this forum began long before the FDA hearings.

The reason for posting that message is this question from LovesJohnDory (David). .

LovesJohnDory... He's a very nice man who helped organize MSpatientsForChoice

No doubt he is!

During 2004 and later, at reading several MS boards, I saw that nearly always the same person conducted the high word. In a crusade against Biogen, Elan and Antegren, these messages were always very negative. Some of the uncountable examples

I hope that you aren't inferring that I originated all those quotes about Tysabri. Almost every single bit of info that I have read about this drug has come from numerous articles and quotes that I have read on various MS forums.

When I read this message from an MS patient.....

- I'm sick to the stomach of HarryZ constantly posting the same stuff on Tysabri. You must have posted the same anti-Biogen / anti-Tysabri posts a thousand times.

Well it might surprise you but I get constant private e-mails from different readers telling me that they agree with I say when it comes to Tysabri, Biogen/Elan and the pharmaceutical industry. Most of these people will not post messages stating this because of the fear of backlash from some others. And BTW, the person who made that above statement about me apologized privately to me.

I can not can understand that you absolutely show no empathy for the feelings of the MS patients which read this MS board, and you only write your own vision, based on rumours and distorted truths. I see that you found your master now, Lauren. The messages from Lauren, which I highly appreciate, relies on known facts, and not on assumptions or rumours.

I won't even address your comment about me not showing empathy to MS patients who read this board. Simply not true.

While you appreciate Lauren's messages, I offer a different opinion on some of things that she writes. There is nothing wrong with giving a different opinion and I always encourage that. Unfortunately some people can't handle differing opinions without becoming nasty.

I can understand that some persons are suspicious in the presence of new medication, and that you warn MS patients for possible dangers. But when I saw that each information of you on Tysabri was always negative, I was so irritated that I started to post messages from neurologists, virologists, Elan/Biogen, and also press releases on Tysabri

Wait a minute here Better....although I'm certainly not a fan of Tysabri, I thing it's going a bit far to say that I am always negative to anything about it. I've supported people challenging their insurance companies to get the drug paid for, I've written many times on more than one MS forum that I hoped that Tysabri would help MS patients in the long run and I've given support to those who want to try the drug. My main bone of contention is how Biogen/Elan have handled the entire introduction of this drug and made everyone pay for their bad business mistakes. And to see the millions of dollars that upper Biogen execs made before the drug was pulled really rubbed salt into the wounds!

The reason that I post little personal messages is because I'm not an MS patient and also because English is not my mother language, and my English writing skills are rather poor.

I'm not an MS patient either but one doesn't have to be a patient to assist others with this dreaded disease! Believe me, your written English is beyond good and I doubt the readers here would care one iota if you made a few spelling or grammar errors

If there are however several members that find that my messages are superfluous, irritatingly and useless, then this is my last post on this MS board.

I'm truly sorry for the illness your mother must endure. But now that you have shown that you CAN contribute other than posting press releases, please do so and offer your opinions and ideas. And if others, including me don't agree with what you have to say all the time, that's part of the process of participating in an open forum. Heck, if Ian and I still talk to one another after some of the disagreements that we have had, then anything is possible

There is no need for you to leave this forum....everyone can contribute..please hang around!

Harry

You guys should pop back to investor village and take Harry with you. People with MS can make up their own minds and they don't need soap operas from people with or without MS who happen to be investors in MS drug companies.

large wrote:You guys should pop back to investor village and take Harry with you. People with MS can make up their own minds and they don't need soap operas from people with or without MS who happen to be investors in MS drug companies.

I hope you don't mind if I pass on the trip to the village...I don't think too many people would appreciate my presence there

Harry