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I'm in the process of reading Montel Williams book Climbing Higher.

In it he asserts that if the number of people estimated to have MS is sufficiently low (250,000) or less, it is considered "rare" and an "orphan disease."

Consequently, drug companies that spend money researching and developing remedies get special tax credits and a minimum of seven years of marketing exclusivity. In other words, any drug company that developed a drug would have a guaranteed monopoly, facing no competition from any other company, for at least seven years. That meant the price of the drugs being developed for the treatment of MS would remain high and that the majority of people who had the disease probably would never be able to afford a cure.

So, does anyone have an accurate figure for the number of people in the US with MS? If not, is there a statistician out there somewhere who can do an estimate?

And, are there any advantages for people with MS to have it classified as an "orphan disease"? If so, what are they?

(BTW, he states NMSS kept reporting the 250,000 estimate for twenty years

which I found appalling

and when he contacted NMSS for an updated estimate they said they weren't sure. Book was published January 2004)

Hmmmmm

Sharon

Sharon,

The NMSS has been stating 250,000 people have MS in the US in order to protect the CRAB drug maker's orhpan drug status.

I believe a survey company hired by Montel Williams came up with about 4 million people. Some people in the NMSS state about 400,000 but I really don't think that anyone knows for sure because of the difficulty of diagnosing the disease.

You can bet though, it is much higher than 250,000!!!

Harry

Nice conspiracy theory about the number of MSers, but the NMSS Frequently Asked Questions section states the following:

How many people have MS?

Approximately 400,000 Americans acknowledge having MS, and every week about 200 people are diagnosed. Worldwide, MS may affect 2.5 million individuals. Because the Centers for Disease Control and Prevention (CDC) does not require U.S. physicians to report new cases, and because symptoms can be completely invisible, the numbers can only be estimated.

How many people have MS? Approximately ... timated.

Nice conspiracy theory about the number of MSers, but the NMSS Frequently Asked Questions section states the following:

How many people have MS?

Approximately 400,000 Americans acknowledge having MS, and every week about 200 people are diagnosed. Worldwide, MS may affect 2.5 million individuals. Because the Centers for Disease Control and Prevention (CDC) does not require U.S. physicians to report new cases, and because symptoms can be completely invisible, the numbers can only be estimated.

Approximately 400,000 Americans acknowledge having MS, and every week about 200 people are diagnosed. Worldwide, MS may affect 2.5 million individuals. Because the Centers for Disease Control and Prevention (CDC) does not require U.S. physicians to report new cases, and because symptoms can be completely invisible, the numbers can only be estimated.

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My own comment is that the recent increase in publicity about MS is a double-edged sword. On the one hand it generates more awareness, which means more funding and maybe better treatments and perhaps someday a cure. On the other hand, it generates more hypochondriacs and more people who somehow want this to be a bandwagon.

Guest,

>Nice conspiracy theory about the number of MSers, but the NMSS Frequently Asked Questions section states the following:

Well, let's look at this.

In the early 80's, the number of people that the NMSS stated had MS was 250,000. In 1993, Betaseron was the first CRAB drug to be given orphan drug status. That meant they were totally protected from other drugs challenging their market until 2000. Once you have over 200,000 people with a disease, it's difficult to obtain this orphan drug status unless you can prove that you won't make a return on your investment.

In the mid 90's, the NMSS stated that 250,000 people had MS in the US. Enter Biogen with their MS drug, Avonex. They wanted a slice of the action but how were they going to get orhpan drug status as well? The FDA can overturn an exclusive orphan drug status if it can be proven that a new drug can do better than the existing orphan drug. But how was Biogen going to accomplish this?

When Betaseron was being initially trialled, there wasn't any such thing as different classifications of MS. The researchers had to use all types of MS patients in their trials. The NMSS Medical Advisory Board decided in 1994 to establish a classification category for each type of MS. Thus we saw RRMS, PPMS, and SPMS. Now Biogen can begin trials with Avonex but decide to choose only RRMS patients for the study (which Betaseron could not) and thus ensure that the results will be better than those of Betaseron. In 1996, the FDA gives Biogen orphan drug status for Avonex. And the number of MS patients in the US is 250,000.

Oh, BTW, all of the members on the NMSS Advisory Committee on Clinical Trials of New Agents in MS were recipients of numerous research grants from Biogen.

Draw your own conclusions.

Harry

Willy and Harry

Thank you both very much for this information.

Isn't there anything that's easy to learn about MS?

I'd never really thought about a conspiracy between NMSS and the drug companies, but I have certainly thought there's a connection. Seems to me US healthcare economics are probably at work.

My interest was the research funding angle that you identified Willy. I'll follow the statistical info on that other thread.

Take care

Sharon

I find myself in a position that's quite unusual for me, which is to be defending established organizations like NMSS and the drug companies. Generally speaking, I'm a contrarian insurgent kind of guy who tends to be skeptical of the conventional wisdom. But there are a couple of realities intruding here. One is that I have multiple sclerosis, and when you have it you don't necessarily welcome the usual let's-say-inflammatory-things tactic. I'm playing for keeps now, so I want to keep it real. The other thing is that, at the time of my diagnosis my local NMSS chapter was incredibly helpful to me, and since I have moved the one here has been helpful, too. I feel as if I have a personal connection there.

The research would indicate that the ABCR drugs, and the forthcoming Antegren, show some level of efficacy. It's far from a perfect situation. You have to inject them. There are side effects. You have no idea whether they will work for you. And the definition of "work" is to not get worse as fast as you would have gotten worse. And they're expensive as hell. Should Avonex, which I take, cost $350 per dose? I suspect not. I suspect that the interferon in the syringe is worth about $15 and the rest is corporate overhead, regulatory costs, distribution, funding of new R&D and no small amount of pure profit.

Is the NMSS "in on it" by manipulating the statistics of MSers? That one is a bit harder for me to accept. I can't see how the NMSS would undercount MSers on purpose, but it's not beyond imagining that they'd do it if they thought it would serve a beneficial larger purpose. After all, they're interested in making sure there are some treatments, and if the system says "orphan drug status" will generate more treatments then I suppose I could imagine the NMSS making a Faustian bargain of some sort. What I do NOT believe is that the NMSS would do such a thing merely to increase the profits of drug company contributors at the expense of we MSers. To think that, I'd have to think the the NMSS is a total sham and that it NOT something I believe about these people.

I am trying to look at the whole picture. MS is a serious and often devastating disease. It destroys people and it breaks hearts. We need research and treatments, and we've got this crazy-a** system in place. I don't think it's the MS Society's job to cut of its nose to spite its face, i.e., to sacrifice its immediate goals of research and treatment in favor of joining someone's crusade to reform the overall health care system and/or punish the drug companies for profiteering. It's th NMSS's job to do what it can do within the system we have. I realize this presents some ethical and political dilemmas and paradoxes, but who ever said life was simple?

Meantime, I need to say this: It was the MS Society's people who answered the phone and returned my phone calls when I was scared, confused and needed help. They gave me crucial helpe in a number of ways that really, really mattered at the time. Anyone else who wants to forget that can do so if they want, but I am never going to forget it. I am eternally grateful to them for it, and I should add that they never once asked me for a nickel in return. If someone helps me, then I will help them. Call it a character flaw if you want. And I'm glad that I've got Avonex available and hope it does some good. If I'm a sap, too bad.

All of which is to say: Keep your eye on the ball, folks. It's not about making points with regard to the evil drug companies or the NMSS being too close to them. It's about our MS and trying to deal with it today, tomorrow and next week. I suggest that no one forget this.

Willy,

First, let me commend you on an extremely well written post. You certainly expressed yourself in an excellent manner.

Secondly, I am a strong supporter of local MS Chapters. I think, in most cases, they perform an excellent service for MS patients. Here in London, Canada, the local chapter provides many great services for MS patients and my wife benefits a lot from them. I provide a lot time and support to these people and will continue to do so.

Once upon a time, I also thought that the NMSS was a great organization and was beyond reproach. A couple of years ago, however, I saw them in action against Prokarin and was able to see how they worked "from the inside". Since that time I have learned even more information about them and it certainly has turned my entire attitude against them. This is a multi-million dollar organization that has tremendous power in the world of MS, yet only 20% of their donations make it to the research world. Their 2000 income tax report showed over 64 employees making in excess of $ 50,000 a year while working for a charitable organization. When they don't agree with something or feel threatened by a medication (LDN for example) they lash out with some pretty shoddy press releases in an attempt to discredit what they don't like. I guess I just can't bring myself around to think as these people being the pilar of light for the MS patients in the US.

I suppose if I hadn't been privy to some of their actions in the recent past, my opinion wouldn't be as tarnished as it is today. But unfortunately that is not the case I have lost all respect for them.

Take care.

Harry

Somewhere along the line I'm not doing something properly when replying to a message. When I replied to Willy's message, it showed me as a "Guest" responding to his post and wouldn't allow me to reply under my username!

Harry

Anonymous wrote:Once upon a time, I also thought that the NMSS was a great organization and was beyond reproach.

I don't consider anything beyond reproach. But in the case of a group with a proven track record, I do think a reproach should be backed by evidence rather than sentiment.

This is a multi-million dollar organization that has tremendous power in the world of MS, yet only 20% of their donations make it to the research world.

Most of their spending, as I understand it, is for services to people with MS. It's inherent in any endeavor that a person or a group have a budget. Resources are scarce. Priorities have to be set. No one, including the NMSS, can do everything. If they spent more on research and less and programs, maybe my phone call wouldn't have been returned.

In a broader sense, people can disagree with the NMSS's priorities but I'd need a lot more evidence than I've seen so far to believe that they're not operating in good faith in allocating resources.

Their 2000 income tax report showed over 64 employees making in excess of $ 50,000 a year while working for a charitable organization.

Hate to break the news, but $50,000 isn't exactly getting rich. Yes, I know that a lot of MSers subsist on a lot less than that, but that's irrelevant to the issue of how much a charity should pay its permanent staff. No group of any size is going to retain good people without decent wages, and in today's economy a decent wage is above $50,000 a year. For an executive or senior administrator, it's well above $100,000 a year. That's just the way it is.

Volunteers only go so far. I say this as someone who has been a volunteer. As such, I came to quickly appreciate the value of good administration, and that comes from permanent staff. NMSS spends only 12% on fund-raising and administration, one of the lowest non-program percentages out there.

That said, I also know that there are various ways of fudging those numbers. This isn't to say that the NMSS is one of the charities that fudges the numbers, but rather to say that their 88% spent on program activities would probably be open to some interpretation if it were to be examined closely. Still, the idea that they have 64 people making more than $50K a year is a big "so what?" to me.

When they don't agree with something or feel threatened by a medication (LDN for example) they lash out with some pretty shoddy press releases in an attempt to discredit what they don't like. I guess I just can't bring myself around to think as these people being the pilar of light for the MS patients in the US.

I agree that their statement on LDN was deficient. If you look on the LDN board here you will see what I have had to say about that.

I suppose if I hadn't been privy to some of their actions in the recent past, my opinion wouldn't be as tarnished as it is today. But unfortunately that is not the case I have lost all respect for them.

Lost all respect? You stated that you're a strong supporter of your local MS chapters. Hate to tell you this, but they are integrated into the national organization. I can understand it if someone would find fault with various aspects of NMSS. I'm interested in those criticisms, but quite frankly your blanket condemnation undermines your case at least in my eyes.

Willy,

>Hate to break the news, but $50,000 isn't exactly getting rich. Yes, I know that a lot of MSers subsist on a lot less than that, but that's irrelevant to the issue of how much a charity should pay its permanent staff. No group of any size is going to retain good people without decent wages, and in today's economy a decent wage is above $50,000 a year. For an executive or senior administrator, it's well above $100,000 a year. That's just the way it is.

If you think that paying over 64 employees in a non-profit organization $ 50,000.00 or more a year is justified and you are only providing 20% of your donation money to research.....well, I can't say much to counter that line of thinking!! This is precisely why Montel Williams started his own MS foundation when he saw the NMSS's numbers.

>That said, I also know that there are various ways of fudging those numbers. This isn't to say that the NMSS is one of the charities that fudges the numbers, but rather to say that their 88% spent on program activities would probably be open to some interpretation if it were to be examined closely. Still, the idea that they have 64 people making more than $50K a year is a big "so what?" to me.

Like I said above, if you feel that way, nothing is going to change your mind!

>I agree that their statement on LDN was deficient. If you look on the LDN board here you will see what I have had to say about that.

Deficient??!!! They knew "exactly" what they were saying and why they were saying it.

>Lost all respect? You stated that you're a strong supporter of your local MS chapters. Hate to tell you this, but they are integrated into the national organization. I can understand it if someone would find fault with various aspects of NMSS. I'm interested in those criticisms, but quite frankly your blanket condemnation undermines your case at least in my eyes.

If you speak to the people in the local chapters they will acknowledge that they are "integrated" with the national office but that's where they draw the line. Quite often they really don't want much to do with them because they feel they can do much better on their own without any interference. I will,however, clarify my criticism of the NMSS....it is with their top executive people and how they operate to protect their domaine. Obviously the NMSS assists a number of people in their overall organization but you only have to look at how they dealt with Prokarin and LDN...and that comes directly from the top.


Harry

If you think that paying over 64 employees in a non-profit organization $ 50,000.00 or more a year is justified and you are only providing 20% of your donation money to research.....well, I can't say much to counter that line of thinking!

Some realities:

1. A budget is an exercise in the allocation of scarce resources. It is rare to the point of being virtually unknown that an organization has enough resources to meet every need.

2. Research is one of many needs associated with MS. The NMSS has to make choices.

3. Every organization of any size, including a charity, needs a staff of fulltime employees. It is impossible to run everything on volunteer labor.

4. $50,000 a year isn't a lot of money in today's economy.

This is precisely why Montel Williams started his own MS foundation when he saw the NMSS's numbers.

It will be interesting to see Williams's foundation's financials. Trust me, there will be administrative costs. And since you've been willing to speculate on the motives of the NMSS, has it occurred to you that Montel Williams and Terri Garr have, to a significant extent, based their careers on having MS? To put it differently: If MS were cured tomorrow, would they still be on the air?

If you speak to the people in the local chapters they will acknowledge that they are "integrated" with the national office but that's where they draw the line. Quite often they really don't want much to do with them because they feel they can do much better on their own without any interference.

I received crucial help from the Central New England chapter of the MS Society, which serves Boston. They seemed pretty happy to have gotten awards from the NMSS for the quality of their services.

you only have to look at how they dealt with Prokarin and LDN...and that comes directly from the top.

We're discussing those issues on the LDN board, so in the interest of brevity I won't repeat myself here about it.

Willy,

> $50,000 a year isn't a lot of money in today's economy.

Not even most teachers make that kind of money!!

> And since you've been willing to speculate on the motives of the NMSS, has it occurred to you that Montel Williams and Terri Garr have, to a significant extent, based their careers on having MS? To put it differently: If MS were cured tomorrow, would they still be on the air?

With that kind of thinking and comment, I am now totally convinced that you really are a strange kind of person with very strange perceptions, Willy.

Harry

Not even most teachers make that kind of money!!

Teachers don't make much money, do they?

With that kind of thinking and comment, I am now totally convinced that you really are a strange kind of person with very strange perceptions, Willy.

Personal attacks are against the Terms of Service here.

Willy,

>Personal attacks are against the Terms of Service here.[/quote]

Hmmm...compared to what you stated about Dr. Bihari on another MS forum, you call my comments on you a personal attack...??!!!

Harry