This Is MS Multiple Sclerosis Knowledge & Support Community

Patientx - I went back to the NMSS website yesterday and can't find their 08 tax return just the 07 one and prior. I definately saw the 08 one and discussed the $765,000,000 million revenue with someone on this board awhile ago. I know I didn't make up the numbers. It was staggering, which is why it stuck with me.

Newlywes4ever - Pls do not quote me anywhere. If I can find their 08 tax return, I'll post the link and you can use that since it is factual. What I wrote is heresay since I can no longer find the source.

bestadmom wrote:Patientx - I went back to the NMSS website yesterday and can't find their 08 tax return just the 07 one and prior. I definately saw the 08 one and discussed the $765,000,000 million revenue with someone on this board awhile ago. I know I didn't make up the numbers. It was staggering, which is why it stuck with me.

Newlywes4ever - Pls do not quote me anywhere. If I can find their 08 tax return, I'll post the link and you can use that since it is factual. What I wrote is heresay since I can no longer find the source.

Complete financial information:

http://www.nationalmssociety.org/about- ... index.aspx

Annual reports are available for 2008.

Besides, according to their 2008 tax return (for year 2007), net revenue was $103.431 million. It's not in the realm of possibility that their revenue went up by a factor of 7x in one year.

Patientx,

I can't find the report I thought I saw but found their Guidestar report ending fiscal 08 and the Better Business Bureau one and both report between $105,000,000 and $109,000,00. I deleted my original post. I don't want wrong info spread, or started by me.

I wonder what the 12M in equities is invested in? Drug company shares, perhaps?

I really like and trust my local MS Society staff. But I am torn because I have a really hard time justifying that salary listed, of almost half a million dollars for the overall top position.

So I started by googling MS Society salaries, and then I found this, which I think is a much bigger issue than MS salaries. How can we deal with such an organized, well-funded campaign?!

https://sjobs.brassring.com/1033/ASP/TG ... des=JINDED

Assoc Director, Marketing Tysabri

This position is responsible for leading the development and execution of the US Tysabri Professional Marketing Strategy.

Essential Functions of the Job:
• Lead professional strategy in alignment with overall Tysabri brand strategy
• Develop and execute promotional strategy and tactical plans targeting Neurologists
• Direct execution of promotional programs and tactics consistent with strategy
• Oversee the development of impactful promotional tools
• Chair the Promotional Review Committee
• Oversee all brand activities at national MS/neurology conferences
• Develop and maintain relationships with professional societies
• Represent US on Global Publication Team
• Coordinate corporate efforts with Key Opinion Leaders/ maintain relationships with KOL’s
• Ensure adherence to budgets

This individual will be required to work closely with the following business functions to successfully lead various initiatives related to the professional marketing of a $1 Billion Brand:

This individual will be required to work closely with the following business functions to successfully lead various initiatives related to the professional marketing of a $1 Billion Brand:
• Sales Force
• Sales Training
• Regulatory
• Legal
• Market Research
• Medical Affairs
• Global Marketing

Supervises:
This position will have supervisory responsibility for a small team of product managers.

Required Skills:
Creative and strategic thinking; strong leadership and influence skills; excellent communications skills; an analytical approach to business problem solving; strong project management skills; supervisory experience.

Experience Required:
• Seasoned marketing professional, with at least 8 years of pharmaceutical commercial experience.
• Experience in development and execution of professional marketing strategies is a requirement.
• Minimum of 5 years biotech/pharma marketing experience.
• Experience in specialty markets; of particular interest are neurology, oncology, immunology or HIV. Multiple Sclerosis experience a plus.
• People management experience strongly preferred.
• Sales and sales management experience preferred.
• Must be adept at influence management.
• Must have excellent analytical, strategic thinking, creativity, and problem solving skills.
• Excellent communication skills and ability to work with cross-functional teams.
• Ability to work under pressure.
• Must exhibit leadership skills and ability to perform in fast paced environments. Self-starter who functions well independently or within a team.
• Strong oral and written communication skills required.

Bachelors degree required; MBA preferred.

"influence management", don't you just love how pitiful that sounds? Can we say "lobbying experience required"??

When will we stop requiring publically traded companies to turn as large a profit as possible for their shareholders, and stop allowing them to abandon all moral or ethical values in order to do so?

Wow -- this one is for an area sales rep from Biogen. It specifically says a job goal is to gain trust so they can influence local MS societies, among other groups, and to use "directed probing" to find out the needs of people who have MS.

http://www.biospace.com/jobs/job-listin ... =Shiredppc

Description
Mobile, AL (Hybrid)- In this field based, Specialty Sales representative position you will be called upon to represent our Neurology products, AVONEX and Tysabri with Key stakeholders in the Multiple Sclerosis community: including Neurologists, allied health professionals, local MS chapters, and pharmacy directors at managed care organizations.

You will convey complex clinical, and reimbursement information to these groups so that all appropriate patients can benefit from therapy.

Utilize strong interpersonal skills to establish relationships of trust that allow for directed probing to uncover the customer's needs. Develop solutions within the Biogen Idec framework that meet these needs.

Develop plans for the candidates business territory that are executable and focus on getting the greatest benefit to the greatest number of MS patients given available resources. Communicate openly with peers, supervisors, and all company personnel with the objective of improving the quality of our business.[/b]


From a different page in the same website -- doublespeak? -- a position listed in patient advocacy but really a Biogen advocate who handles keeping up that famous "trust" relationship with patient-advocacy groups:

Product Manager - Patient Advocacy & Marketing
Biogen Idec, Inc. - Wellesley, MA
See original job posting at hirelifescience.com »
This position is a key customer-facing person who manages the Biogen Idec Patient Advocate program including the strategy, relationship building, brand coordination and operations which includes finding and training new advocates, tracking usage and quality within the BIRN database, and communicating and training with the field. This position is responsible for developing and maintaining our relationships with key patient and professional organizations (NMSS, CMSC, MSAA, MSF and others) ...

To marry health needs together with profit and greed really impacts me emotionally.

It literally makes me want to cry it seems so inhumane and contradictory.

I promise, last post on this tonight -- Biogen's page on their world-class neurology marketing team:

http://www.biogenidec.com/careers_neuro ... eting.html

On the right side of the page, there's a link where you can "see all the neurology marketing opportunities!"

Yes, it makes me feel emotional too. Yuck.

bluesky63 wrote: Yes, it makes me feel emotional too. Yuck.

No wonder we have such a high incidence of depression. "Brought to you by the makers of Tysabri and Avonex..."

And you know, I started out by trying to reassure myself about the MS society and the salaries . . . it gets decent marks from charity ratings and the BBB, but I when I googled jobs at the MS Society I was amazed at how many people are employed on our behalf.

A lot of people's jobs depend on multiple sclerosis! At least the MS Society uses a lot of volunteer interns to get its work done. And at least their stated purpose is direct support.

Unlike Biogen, which seems to have turned the whole concept around and is gleefully advertising what a great cash cow sick people have become for them.

I read an article recently on-line (IrishTimes) that the goals are 190 new patients everyweek.

In all honesty, the fact that marketing directors are needed that are good in marketing does not offend me. The fact that our "for profit" drug companies are seeking to market their drugs effectilvely does not, in and of itself offend me. The FDA is supposed to keep them honest and not allow them to market the drug if it is too dangerous. The fact that the drugs pushed on us MS patients have some negative and dangerous side effects does not offend me. It is a nasty disease and I believe that they are trying to help, and even believe that they have provided some help to some patients with the drugs they have developed.

WHAT DOES OFFEND ME IS THE FALSE AND MISLEADING INFORMATION BEING SPREAD ABOUT THE DANGERS OF THE LIBERATION PROCESS!!! And I do believe that the drug companies, and neurologists influenced by the drug companies, and MS societies influenced by the drug companies are active in this. If you want an example of the false innuendo that this is overall a dangerous treatment, just read the essay in the Lancet for May.

There have NOT been two deaths (as far as I know, please correct me if I am wrong, I want to stay accurate) attributed to the treatment of CCSVI. There was one death, a bleeding complication secondary to cumadin administration that is a standardard part of stent treatment. There was one stent that migrated to the heart (bad result but not a death)

As far as I know there have been NO ADVERSE EVENTS RELATED TO THE ANGIOPLASTY (the "liberation treatment"). Let me know it this is not correct.

BTW, restenosis is not an adverse event in my mind. It is just the recurrance of the stenosis, i.e. it returns to the way it was, no worse than original condition.

They are even trying to put the brakes on diagnosis, for God's sake. This is too rediculous for words.

fogdweller wrote:WHAT DOES OFFEND ME IS THE FALSE AND MISLEADING INFORMATION BEING SPREAD ABOUT THE DANGERS OF THE LIBERATION PROCESS!!! And I do believe that the drug companies, and neurologists influenced by the drug companies, and MS societies influenced by the drug companies are active in this. If you want an example of the false innuendo that this is overall a dangerous treatment, just read the essay in the Lancet for May.

There have NOT been two deaths (as far as I know, please correct me if I am wrong, I want to stay accurate) attributed to the treatment of CCSVI. There was one death, a bleeding complication secondary to cumadin administration that is a standardard part of stent treatment. There was one stent that migrated to the heart (bad result but not a death)

As far as I know there have been NO ADVERSE EVENTS RELATED TO THE ANGIOPLASTY (the "liberation treatment"). Let me know it this is not correct.

I would suggest reading the Lancet article a little more carefully. From that article:

In August, 2009, a patient with multiple sclerosis (MS) had two stents inserted into her right jugular vein; she died shortly afterwards of a brain haemorrhage while on the anticoagulant warfarin as a result of the procedure.

And the article never mentioned any adverse reactions to angioplasty. But, on that topic, what about what happened to the user posting as Rici?

They are even trying to put the brakes on diagnosis, for God's sake. This is too rediculous for words.

I would like one person to show that drug companies have been involved in spreading false rumors about CCSVI, or that MS societies are deliberately doing so.

Fair crtiticsm, patientx. As far as the Lancet article, I cannot point to any actual facts that are wrong.

To be clear,
the Lancet article was just pointed to as an example (I have heard that misinformation several places, including a recent webcast interview with Zamboni and Zadinov and two others, as well as a number of posts on this forum) and I refered to it as an example of misleading innuendo.

For example, the lead paragraph opens with refernce to "Poor judgement in medicine" leading to "fatal consequences" (plural) including "lives (plural) lost". The article goes on to quote various doctors arguing that some people believe that CCSVI is a cause of MS but that is not yet scientifically proven (I heartily agree. So does Zamboni.) , that we should study the issue with scientific skepticism, objectivity and eqipose (I fully agree!!!) and that given the history of failed and even bogus MS treatments in the past, we should be especially careful and skeptical (I agree with this). Given that the meat of the article was a caution about getting overly enthusiastic about CCSVI before the science is in, posing the article from the outset as a warning about poor judgement in medicine leading to lives lost is misleading innuendo, especially since angioplasty is relatively safe, well studied (although in arteries, not veins) has been done in many more cases than stents in and to my knowlege has not resulted in any adverse events.

I agree with you to some extent about the drug companies. I doubt there are any concrete facts anywhere that they are actively opposing CCSVI research. For the most part, they are doing what for-profit companies do, and have sunk billions of dollars into research into MS, all to the benefit of patients with MS. The drugs they have developed have helped some MS patients, and none are being marketed with evil intent.

However, I also know that when they have huge investments in drugs lines that may be rendered obsolete by a relatively inexpensive one-time minimally invasive surgical procedure, they will naturally have a tendency to steer doctors and local MS societies away from giving that protential procedure much weight.