That 400,000 number

[CtResident]

I don't know why I let this bother me, but it does. Big time. Every single thing I read on MS, be it library book, website, magazine article, E-V-E-R-Y THING! says that 400,000 Americans have MS.

Really. I guess in the grand scheme of things it does not matter one iota. But it seems to be misrepresented.

Take a look at this forum. Day after day, a new group of people sign on looking for help. Just a stab in the dark, 5 per day? 35 per week? 140 per month? Can't do math higher than that, LOL.

But it makes me wonder. We're just a minute corner of the MS cosmos. The numbers should be growing, not staying static.

What I hope to gain by this post? Umm, dunno.

Just needed to vent.

Suzanne

[doublevision1]

I emailed the Nat'l Assoc about the discrepancy on their website.  Under the "Who Gets MS?" section it said 200 dx'ed per DAY, and under the "How many people have MS?" section is said 200 per WEEK.  

I got a pretty quick response and they acknowledged the error.  I was told that it is in fact 200 per WEEK and that they had made a correction.  I went back to the site and checked, and they did!  

So now at least they are consistently underreporting, instead of INconsistently underreporting!  lol

I was going to ask the guy about the basis for these numbers, but I realize he's just a web developer trying to do his job, not an epidemiologist!

FYI!

db1

[essdipity]

Gosh, this gets interestinger and interestinger. I wonder if there's a way to find out how many are taking the DMDs. And a way to extrapolate how many decided against them, and/or chose some other therapy? This would give us some decent numbers. I guess the drug companies aren't about to reveal their stats, though.

Another thought might be professional neurology associations. I wonder if they poll their members about how many patients they have with what diagnoses and what they prescribe.

ess

[doublevision1]

200 dx each week in the US is a figure cited in a newspaper article, which said it was quoting the National MS Society.  

However the National MS Society web page itself says 200 PER DAY.  Now, if that were true, that would be over 50,000 new cases every year (assuming that most people probably don't get dx'ed on the weekend).  Which most definitely calls into question the 400K number.

Who knows what to believe?!!

Montel did say in his book that the more he dealt with the National Society, the more he doubted their effectiveness.  He says they told him that they were using numbers that they themselves had not verified.  Oy!

I'm thinking we ought to start lobbying our governement reps in our respective countries for a proper and reliable tally.  There are huge implications in terms of research funding, current and future strain on the health care system, etc.  

db1

[essdipity]

Hiya. Very interesting! How do you know that 200 are diagnosed each week? Is this the US, or worldwide?

The 400,000 figure is indeed used ubiquitously, but I'm not sure from what source. I'd be inclined to trust the National MS Society tally, whatever that may be, since they have a vested interest in being a reliable source.

ess

[doublevision1]

This is what Montel said about it:

"I was also suspicious because that 250,000 figure would classify MS as an 'orpan disease.'  In legal terms, a disease that affects a quarter of a million people or less is deemed "rare" and drug companies that spend money researching and developing remedies get special tax credits and a minimum of 7 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 7 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.  But if the number of people who had MS was in the seven figures, as I suspected, and not the low sixes, then there would be an incentive for more drug companies to develop new drugs to fight the disease.  And wouldn't that end up lowering the price of these drugs, because of the nature of competition in the marketplace?  This disease does not deserve orphan status.  MS should be treated like any other disease that affects a large number."

Since his book was published in 2005, I don't know if the 'orphan' status is still accurate, now that the 'official' number is put at around 400,000.

In addition to the Gallup poll that Elaine mentioned, Montel cites a poll done by Zogby International that put the number at 2.7 million in the US alone.   It would be very interesting to know how the methodologies compare, to come up with such different numbers.  In any event, both numbers are considerably higher than the 400,000 that remains static.   .  

Since 200 new cases are apparently dx'ed each week, and since generally we don't die an early death, it is only logical that MS numbers should continually be increasing.  I'm no mathematician, but geez, even I can figure THAT out.

:)

db1

[CtResident]

You're right, I do remember Montel mentioning something about that very number. But it was a library book and not around for me to quote from.

Ohhh, I just thought of something. Maybe the word orphan means the way we all feel left alone while awaiting diagnosis?? Hmmm??

Suzanne  

[monotreme]

Montel Williams addressed this issue in his book, "Climbing Higher".  The MS Society only lists about 300,000 cases of MS in the U.S.  He took issue with that and called them. Their response was that they don't really update their statistics frequently.

So Montel hired gallup to do a poll.  They came up with almost one million diagnosed MS cases in the United States.  I am not sure about the orphan disease situation, but I would believe the gallup numbers .

Elaine

[essdipity]

We must have been writing at the same time. Thanks for the info you shared.

ess

[essdipity]

I checked the US Food and Drug Admin web site about this. It says that in the US, an 'orphan' disease is defined as one which afflicts 200,000 or fewer people. So that lets out MS here.

ess

[doublevision1]

As far as I know MS is still considered an orphan disease; the Act applied to Rebif in 2002 when it was approved to be marketed despite Avonex's protection till 2003.  Perhaps MS does not have to be an 'orphan disease' per se for the act to still apply?

I looked it up on the govt website and it says: "...the term "rare disease or condition'' means any disease or condition which (A) affects less than 200,000 persons in the United States, or (B) affects more than 200,000 in the United States and for which there is no reasonable expectation that the cost of developing and making available in the United States a drug for such disease or condition will recovered from sales in the United States of such drug."

These drug companies are for sure making a good profit on MS drugs, though of course not as much compared to more common conditions.  Although 400,000 in the US alone is a lot of potential customers (and I agree with you, I believe the number to be higher), it's not that high relative to US population (0.001%), nor compared to other diseases, ie: 70 million people in the US with some form of heart disease.  

I'm optimistic about all the research that's going on, and don't know enough about the politics of the Orphan Drug law to understand whether in the long run it will serve as an incentive or disincentive for further research.  I read a critique of it somewhere and the author that felt the Act was not good for MS patients; that MS stats were underreported; and that this law should not be applied to MS drugs.  I'll try to dig up the article and if I find it I will share what it said.

db1

[essdipity]

Is MS considered an Orphan disease? I'd be surprised if it is. There's enough critical mass out there to make it profitable for all 4 CRAB med manufacturers. They sure don't do it out of charity. There's also a huge amount of MS drug research ongoing, and if any hit real paydirt the profits will also be enormous for that vendor.

I too would like to hear more about this subject.

ess

[doublevision1]

It's an interesting point, and I also wonder where the stats come from, and why they don't seem to change.  In Canada the figure is estimated at 75,000; adjusting for population differences, this is double the diagnosis rate for MS in the US (perhaps because we are that much further away from the Equator?).

I wonder if at the heart of it, this is a political issue and has anything to do with the Orphan Drug laws.  Before these laws were in place, drugs were often not developed for conditions that occurred relatively low in the population, due to low profitability for the drug companies.  As I understand it, under the Orphan Drug laws, these companies are now eligible for incentives to develop drugs which might not otherwise be developed.  One of these incentives is a 7 year monopoly; these laws prohibit other companies from developing the same drugs and cutting into their market share for this period.  Since Avonex and Rebif are virtually chemically identical, Rebif had to prove it was superior in efficacy to Avonex in order to be available to the public before Avonex's 7 year monopoly had expired.

So keeping the MS population numbers low ensures the status of MS as an 'orphan disease' is maintained, which is good for the drug companies.  Perhaps it is also good for patients if it means that the companies continue to develop new drugs which might not otherwise be developed for a relatively small market compared to other conditions.  On the other hand, monopoly = no competition = high prices for consumers.  

If anyone out there has opinions on this topic, or if I'm incorrect in my understanding about the ophan drug thing, I'd be interested in your thoughts.  

db1

[MCBCON]

Well, many americans believe in that trickle down economics idea too.  How many folks who come here and after years are still not diagnosed?  They are part of the uncounted.