Millions of MSers

mrhodes40 · Post by **mrhodes40** » Sun Mar 29, 2009 11:52 am

I listened to Elaine DeLack's online talk about MS and prokarin and she said something interesting to me: That Montel WIlliams had paid for a Gallup poll to see how many MSers there are and the number was high, if I remember right 1.5 million?

Chris recently made reference to a high number like that too.

As far as I know the official numbers are still much lower, like 400,000.

Can anyone shed any light on this? Did Montel do such a thing? I can't find reference to it.

If such deception is taking place, meaning the official numbers are kept low, obviously the reason would have to be to preserve "orphan drug status" and "special patent privileges"...

mrhodes40 · Post by **mrhodes40** » Sun Mar 29, 2009 2:57 pm

Well PK and I know scads of people with MS and so does eveyone I know. Every time I tell someone I am immediately met with "Hey my aunt/brother/friend/sister etc has MS too and he/she really likes......"(fill in the blank bee stings......gluten free......fish oil...)

The 400,000 number should be around one in a thouand considering population. I know a heck of a lot of MSers and I do't think I know the thousands it would take to have me be able to "know" that many, and I'm not talking about a support group either, I'm talking about people I just know otherwise.

I suspect the numbers ARE a lot higher. It rang true to me. But I can't find anything supporting the idea, or even reference to the Montel poll, which seems odd.

dignan · Post by **dignan** » Sun Mar 29, 2009 3:13 pm

Here's an atlas of MS site, it's fun for the whole family! (a family of nerds)

http://www.atlasofms.org/query.aspx

mrhodes40 · Post by **mrhodes40** » Sun Mar 29, 2009 3:58 pm

Man, DIgnan that was a cool site! Nerd alert! Nerd alert!

320-400,000 they say. Confirms the official estimate. Maybe Chris will say where he heard the higher number he mentioned in a post.

"Elaine DeLack says Montel Williams says a Gallup poll says...." is a little weak for me.......

HUTTO · Post by **HUTTO** » Mon Mar 30, 2009 11:38 am

they did do a poll. him and that actress and a few other people were on larry king live. they did it together. the estimates were over a million. not to mention the thousands of people that weren't officially dx. its funny that its been 400,000 for the last 10 years. there just isn't anyway to track it. not like cancer or aids or anything.

chrishasms · Post by **chrishasms** » Mon Mar 30, 2009 12:34 pm

I read in an article at a doctors office, maybe even at Hopkins, I think, but there is supposedly 4 million MS'ers worldwide, 400,000 Known MS cases in the US with a thought that could be as high as a million without everyone knowing it yet.

My wife showed it to me, I just wish to hell I could remember where it was from.

That is why I try to explain to people the few folk who actually post on these things make up maybe MAYBE 1% of all MS folk. Well maybe more than that, but, really it isn't that dang much.

peekaboo · Post by **peekaboo** » Mon Mar 30, 2009 1:32 pm

Montel says that the 1.5 million people in America living with MS suffer a little differently.

Montel was on the oprah show a wk ago or so. I copy/pasted the above from Oprah website.

Hope this helps

mrhodes40 · Post by **mrhodes40** » Mon Mar 30, 2009 2:27 pm

Wow, hey thank you so much! I appreciate it Peekaboo.

PK I agree the name of it is one thing the disease a whole nother thing.

Chris, we that post are few. I also think most just go to the doc and get what they get. TIMS attracts a different crowd.

Just today I was in a store and someone said "You have MS?" and I was like yeah....and she was saying her brother has MS too and her friend. I thought of this thread and thought to myself "I know it has to be more than 400,000."

The million and a half is over 300% more than they are saying of course.

The problem with that is that the people gave it orphan drug status so that the pharmaceuticals would be enticed to make drugs for us since we are so "few" it might not be profitable for them. They then get special patent protection by us being designated as an orphan disease, they get to keep patents longer and with more restriction.

that means more cost for us

But we are not such a small group, so they get these advantages and then can make large profits off of us becasue there are so many more of us than a genuine orphan disease. Then they get to have the special protection anyway even though they have a larger market.
Many would argue SSSHHHHHhhhhhh!!!! We WANT them working on our disease.

My argue back is Yes but we are a large market at 1.5 mill in the US and 4 mill worldwide, they are doing it because we are so many.

It might be interesting of some of the folks here who are financial gurus who read forward looking projections for these drug companies and see how many patients they are projecting in terms of future marketing and profits..... They speculate things like that do they not?

or how many someone like Teva says they serve, or Biogen. I wonder what those numbers add up to?

And I wonder if the trouble we have with people like Teva trying to block generic release has anything to do with orphan status? We can sure use a break on these old drugs that long long ago repaid the research costs.

chrishasms · Post by **chrishasms** » Mon Mar 30, 2009 2:39 pm

True but Teva does have a program that I am on where they pay for the Copaxone so I don't pay it...however that is one company and one drug and one subset of people it benefits.

I have quit giving to some of the major MS groups because they are just a fancy organization for funneling money into the Pharma pockets.

mrhodes40 · Post by **mrhodes40** » Mon Mar 30, 2009 3:02 pm

I have quit giving to some of the major MS groups because they are just a fancy organization for funneling money into the Pharma

Sadly me too.

peekaboo · Post by **peekaboo** » Tue Mar 31, 2009 6:38 am

here is a contraction of # of MSrs taken from Medtronic website (baclofen pump co.

Of the estimated 400,000 people in the United States and 2.5 million worldwide with multiple sclerosis,1 over half suffer from spasticity.2

who to believe?

notasperfectasyou · Post by **notasperfectasyou** » Tue Mar 31, 2009 7:07 am

I'm sure that for a variety of reasons, it's complicated to even enumerate the number of people worldwide being treated for MS. Those would be known diagnosed cases. I wonder how the Cancer or Heart Disease folks count cases. Do privacy laws get in the way?

Then as a separate, but related issue the undiagnosed is a huge issue. I mean, think about it. Folks come here and share their story of how long it has taken to find out that they MIGHT have MS. There must be large populations of people in developing contries that are not even close to being diagnosed. I don't entirely fault the folks doing the count, I can't imagine how this could be done accurately at a reasonable cost. Ken