Hi Dave -
Yes, I was just talking about this the other day! I've been at this (MS) for 30 years now & you're right, the number NEVER does change! You may be onto something.........the reason why it doesn't.
I think the MS Society supplies these statistics, but keep in mind, they provide alot of people a living. MS treatments focus on "maintaining" & hardly repair or cure.
In the past 60 years, nothing much has changed........not even how many people even have this miserable disease!
Realizing this kinda takes the "H" out of hope a cure will ever surface, huh? We all keep looking for one, don't we?
{{HUGS}} - Maggie

Hi,
Interesting,! Where I life is reported as no cases of ms,,so the ms foundation has a first year free membership to try to get some real numbers, the hard thing is people don't seem motivated to do so, specially the ones on denial.
I think the best is by meds dispensed or neuros having to report cases without disclosing basic info. Maybe that would work.

Alma

There was talk about the neuros reporting all their cases of MS in so that there would be an accurate MS number. It was either by the MS society or legislation. I think that it would help, but I don't think that the legislation got anywhere. That 400,000 number is getting to be old since so many more people are getting the dx every day.

There is a book called How to Lie with Statistics (Darryl Huff-pub, 1954). Read it and it will answer Dave's question and many others. Diabetes has no cure. Why? It is an extremely profitable disease. Especially the Dialysis component

My belief is that pharma, MS societies- deliberately keep MS numbers down so that the MS medications can keep within the FDA'S 'orphan dug status' .( Developing Products for Rare Diseases & Conditions). That way they are on the fast track to be on the market fairly quickly.

I don't think people are being evil but there is just a huge greed factor involved.

For more info here is FDA link:

http://www.fda.gov/ForIndustry/DevelopingProductsforRareDiseasesConditions/default.htm

I've had 'diagnosed' MS for 15 yrs and that concept has also been mentioned to me by physicians. My former neuro never told me I had moved into secondary progressive. Because of insurance reasons. I was taking Avonex.

The number has jumped from 300,000 to 400,000 in a decade in govt stats. As I was researching numbers I came across some interesting news, There is a movement to more accurately track the incidence of MS, Link:

http://www.medicalnewstoday.com/releases/40510.php

My question is why? I hate to sound cynical but profit margins have a huge influence on this topic. I was amused to come across a report on "The Market for MS' published by a medical market research firm. Investors rely on those reports. It cost $56 for 24 hr access or $79 for 30 day access so I passed............. (lol). I used to work as a medical marker researcher but not that kind!

I have to say, in fairness to the drug discovery business, it is extraordinarily expensive to develop a drug. But pharma needs controls on marketing influence and much more. That is another whole topic.

I can see why neuros might seem like a good source for numbers. My thought here is No. They make too many diagnostic mistakes and have a weird outlook. I wouldn't be surprised to find out PCP's diagnose/suspect more often than neuros..

I think the numbers are also wrong due the lack of an unbiased reporting mechanism, to lack of insurance, the cluster effect (I came from a cluster-4 people on my block were diagnosed with MS), under reporting in the African American community and changes in the diagnostic criteria among others.

Montel Williams foundation puts the number at over a million in the US but when I looked I couldn't find verification of that on his site. I have heard him say that. Anyone doubting Montel's commitment to MS research needs to see who he his foundation has funded. I get real tired of these Montel bashers.

(http://www.montelms.org/TheFoundation)

Well lets see what number they come up with and how it is going to make life with MS better for all of us! Thanks for bringing this up Dave. I would not have found out they are making an attempt to report more accurate figures if you hadn't asked the question!


In closing (I am going to top talking now) I think everyone might find this youtube link interesting. Its a well produced video by the MS society:

http://www.youtube.com/watch?v=3gJ0mCY_Ado&feature=player_embedded#!

Cheers,

Melanie

From a public health standpoint, I believe it simply comes down to logistics:

A.) there is not an MS registry like there is for HIV/AIDS, Hep, etc where it is mandatory for physicians and healthcare facilities to report occurances to the state or on a national level. Since MS is not a communicable disease HIPPA protects the right to disclosure of medical history, thus all reported information is voluntary.

When we have individuals such as Ann Romney running around saying she "cured" her MS that is not good for our cause. It creates a sense of shame for many of those not doing well, and clouds the public understanding of what MS really is. Second, not everyone likes to freely share their medical information and many people, like those here on DS are living without an official diagnosis.

So I think it is not a get rich scheme, but something that would have to be approached logistically. There are MS registries out there, how many people here have registered with them? To say people are being inaccurate starts with those actually living with the disease. I'm a big fan of the idea that the squeaky wheel gets fixed the fastest!

Very good

The two of us already registered.

Such good information Melanie, I am going to visit every site. Rorolady, where do you register? I have had MS for 30 years and don't know where to register. My younger sister also has MS , and my late brother has MS. I don't think Thayer ever registered either.

If you read Montel William's book "Climbing Higher" (library might have it) it talks about how Montel never seen the 400,000 number change over a decade ago. Mind you this book has been out quite a while and I read it maybe 5-6 years ago.

In the book, he says they finally told him they were not taking numbers accurately. So Montel conducted two separate, independent polls on the number of MS in the US at that time. One poll came back VERY close to a million (maybe 200 people from making that number) and the other came in at around 3 million. Even if you believe the conservative number that is more than double what they are reporting.

THE ISSUE with getting the accurate numbers done is because if we have a million people with MS. Then gov't and insurance companies will allocate more money toward research of this disease.

My husband and I looked at what the drug companies take in a year (this was a few years ago when there wasn't anything besides CRAB + Tysabri). When you divide each number with about how much they charge, then add the sums of these drugs it comes to about 400,000 people. The issue we both had was it does NOT include the people who had to stop medication because of side effects, the people who could not afford the meds, the people that decided never to take the meds and all those that take a few years (or decade) to diagnosis. So at least to us, the million number seemed closer to the truth which is sad because so much more research would be done if the numbers were more accurately counted. ) :

Good post that needs to be read by more. Maybe if we could bring public light to this information we could get more research dollars.
Anyone have ideas on how we could make this a PUBLIC topic? Anybody know a reporter or writer of well read newspaper, magazine, webcast, twitter account or...Sharon Osbourne?

EP

I've registerd also, the NMSS website says 200 new cases are DX'd weekly around the world