[nfb-talk] Vanda, what is all the fuss about?

Michael Hingson Mike at michaelhingson.com
Sun Feb 2 19:41:02 UTC 2014


Hi all,

I am coming into this discussion a bit late and I have tried to read many of
the back posts before responding.

I agree it is unfortunate that the adds aren't as positive and strong
concerning blindness as we would like.  I must puzzle over this since the
NFB has been closely interacting with Vanda for more than three years.

As for the testing and studies Vanda asked for volunteers for nearly two
years.  They wanted volunteers to test the drug in a double blind study.
They got many volunteers and over a year ago Vanda announced that they had
found a good positive effect introduced by their product.

Now Vanda is moving forward and has FDA approval under the prescribed
process for that to occur.  Where has everyone been?  The information for
all this has been on these lists as well as many other list serves.

Vanda could do more to help show a positive image about blindness as they
create their adds.  So nicely contact them and make positive suggestions.
Also, contact our National office and suggest improvements, but please
recognize that Vanda has indeed proven a hypothesis it formulated and as a
result it created a product which can help blind people who have sleep
issues.  Keep in mind that this product, as with most blindness related
things, will have a limited market, but Vanda certainly determined that its
product was worth creating or it wouldn't have done so. 


Best,


Michael Hingson

-----Original Message-----
From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of David
Andrews
Sent: Sunday, February 02, 2014 11:00 AM
To: NFB Talk Mailing List
Subject: Re: [nfb-talk] A little concerned about this new drug aimed at
totally blind population

You may consider the ads to be trivial -- but many here will not.  They
reflect how society feels about us, and they perpetuate antequated notions
of blindness and blind people.

Dave

At 12:36 PM 2/2/2014, you wrote:
>You'll have to forgive me for thinking you might not be looking at this 
>issue with complete objectivity .  I can't imagine how I got the idea 
>that you held antipathy for  Vanda. I guess maybe I took it
>wrong when    you called them snake oil salesmen.
>
>And, no, I do not have to admit  their ads take us for fools. That's a 
>subjective issue that I want no part of. If you want to gripe about 
>their ads, go ahead.  It wouldn't occur to me to care about something 
>so trivial.
>
>On 02/02/2014 09:59 AM, Mike Freeman wrote:
>>Hey, man! Tone down the rhetoric.
>>
>>If you read carefully one of my last messages, I admitted to you that 
>>I stood corrected and that one of the articles did say they did a 
>>double-blind study.
>>
>>Please do not confuse skepticism with antipathy. I don't think any of 
>>us begrudge  Vanda Pharmaceuticals the right to develop a non-24 drug. 
>>But their advertising hype tends to prejudice some of us against their 
>>research in that some of us think that a truly scientific study 
>>wouldn't appeal as much to problems of the blind in terms that are 
>>all-too-familiar to many of us.
>>
>>Those of us with diabetes are unfortunately very familiar with 
>>research hype
>>-- "they" have been going to have a cure for Type 1 diabetes "just 
>>around the corner" for the past half-century, for example. And there 
>>has been research here in the Pacific Northwest on the non-24 problem 
>>since something like 1985. I remember a doctor from Oregon State or 
>>the University of Oregon writing to Dr. Jernigan asking what we 
>>thought of such research about that time and he replied, in effect, 
>>that if the research was carefully done, NFB would have no problem with
it. IMO this is still what many of us think.
>>
>>But you'll have to admit that their advertisements seem to take us for 
>>fools
>>-- not an auspicious way to win friends and influence people.
>>
>>Mike
>>
>>
>>-----Original Message-----
>>From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of Todor 
>>Fassl
>>Sent: Sunday, February 02, 2014 7:08 AM
>>To: NFB Talk Mailing List
>>Subject: Re: [nfb-talk] A little concerned about this new drug aimed 
>>at totally blind population
>>
>>Mike,
>>
>>I asked you a question. How in the world did you come to the 
>>conclusion that the FDA approved this drug without a double blind 
>>study? That's an important question. You should try to figure out what
caused you to make
>>such a ridiculous mistake.   Maybe you're not looking at this issue
>>objectively. Maybe you should try to be more careful. That's always 
>>important but even more so when dealing with medical issues.
>>
>>All this stuff below is nothing but a smoke screen you're throwing up 
>>to avoid admitting you shot your mouth off on a topic you know nothing
about.
>>Now, get out there, do some research about this drug, and then get 
>>back to us if you still have something to say.
>>
>>
>>
>>On 02/02/2014 12:31 AM, Mike Freeman wrote:
>>>Sir:
>>>
>>>I sit corrected about a double-blind study and am glad to be informed.
>>>However, I assure you that FDA isn't always as careful as you might
>>believe.
>>>The announcement itself gives some indication of this in that FDA 
>>>fast-tracked experimental use of this drug, presumably because of the 
>>>blindness angle. And be assured that until various specialists in 
>>>statistical medicine and epidemiology insisted otherwise, the 
>>>original trial of the Salk poleo vaccine was going to be a 
>>>single-blind, not a double-blind study. But wiser heads prevailed so 
>>>it was a full pluscebo-controlled, double-blind study with something 
>>>like fifty thousand participants -- enough to give truly valid
statistical results.
>>>
>>>And way back in 1936,Dilantin was fast-tracked for epilepsy control 
>>>because at that time, it was about the only drug other than 
>>>phenobarbital that was effective.
>>>
>>>And can you say viox or celibrex? Or Avandia, which was originally 
>>>approved, then got a strong warning label and now has been shown 
>>>largely not to merit that label?
>>>
>>>We're all (including scientists and medical personnel) human.
>>>
>>>Cheers!
>>>
>>>Mike
>>>
>>>
>>>-----Original Message-----
>>>From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of 
>>>Todor Fassl
>>>Sent: Saturday, February 01, 2014 4:50 PM
>>>To: NFB Talk Mailing List
>>>Subject: Re: [nfb-talk] A little concerned about this new drug aimed 
>>>at totally blind population
>>>
>>>Mike,
>>>
>>>How in the world did you come to the conclusion that no double-blind 
>>>studies have been done? That's *crazy*. The FDA doesn't approve drugs 
>>>w/o double blind studies. No wonder people accuse you of not knowing 
>>>what you are talking about.  This is so typical of your behaviour. 
>>>You never seem to care whether you know  the first thing about a 
>>>subject before shooting your mouth off. Do you realize how 
>>>irresponsible you are being? This is a medical issue, What the f**k 
>>>do you know about
>>medicine?
>>>Here's a link to an article that specifically mentions a double blind 
>>>study that was done:
>>>http://www.sciencedaily.com/releases/2013/06/130617142045.htm
>>>
>>>
>>>
>>>
>>>
>>>
>>>On 02/01/2014 05:37 PM, Mike Freeman wrote:
>>>>Steve:
>>>>
>>>>Obviously, I agree with you on all counts.
>>>>
>>>>In addition, while at the national Center, I heard a number of ads 
>>>>pushing hetlioz and I found it amusing that they start out with a 
>>>>supposedly blind person saying: "You can't see me because this is 
>>>>radio. I can't see you because I'm totally blind." AS if he wasn't 
>>>>also
>>on the radio!
>>>>While not denying that some may find the drug helpful, I must say 
>>>>that,
>>>like
>>>>you, I do not think nearly enough work has been done using controls 
>>>>and
>>>I'd
>>>>bet good money that no pluscebo-controlled, double-blind studies 
>>>>have been done.
>>>>
>>>>Mike Freeman
>>>>
>>>>
>>>>-----Original Message-----
>>>>From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of 
>>>>Steve Jacobson
>>>>Sent: Saturday, February 01, 2014 2:24 PM
>>>>To: NFB Talk Mailing List
>>>>Subject: Re: [nfb-talk] A little concerned about this new drug aimed 
>>>>at totally blind population
>>>>
>>>>Hi,
>>>>
>>>>I have also been uneasy about all of this, but I recognize I don't 
>>>>know
>>>all
>>>>there is to know about all this.  Because One is blind and doesn't 
>>>>seem to have a sleep problem like this doesn't mean nobody does.
>>>>Because ablind person has a sleep disorder doesn't mean it is 
>>>>related to blindness, either.  I have seen firsthand where sleep 
>>>>clinics dealing with
>>>a
>>>>blind person assume the problems are related to blindness without 
>>>>running normal tests.  I've seen doctors actually get excited like 
>>>>little kids when they think they have a blind person with a sleep
>>problem.
>>>>It also appears that the drug Vanda has has now been approved and 
>>>>was put on a sort of fast track because it deals with a rare and 
>>>>severe condition.  Blind people will have a disservice done if this
>>>drug
>>>>is prescribed before a thorough evaluation is performed to analyze 
>>>>serious sleep disorders.  I also think that painting blind people
>>>in
>>>>their mass-marketing efforts as struggling to stay awake all day is 
>>>>not helpful in our efforts to get jobs.  There have been other 
>>>>marketing efforts, though, where people have not been paid, so I 
>>>>don't know if that
>>>is
>>>>Vanda or not.
>>>>
>>>>
>>>>I will forward the note I received regarding the approval of this drug.
>>>I'm
>>>>afraid I had to laugh a little when I saw that one side-effect is 
>>>>drousiness.  I want to be clear, though, that I do not claim that 
>>>>there
>>>are
>>>>not people with serious disorders who may be helped.  I also can't 
>>>>say
>>>that
>>>>I know for certain that this particular disorder doesn't exist.  I 
>>>>just think we need to be sure that we are not stereotyped into this 
>>>>disorder in a way that leaves other disorders undiagnosed.  We also 
>>>>need
>>>to
>>>>recognize that for such research to be real accurate, a control 
>>>>group who
>>>is
>>>>not blind but shares other similarities, such as the same 
>>>>unemployment rate, would need to have been used, and I have not been 
>>>>convinced that was done in the reading I've done, but I don't claim 
>>>>I've read every word of every study.
>>>>
>>>>Best regards,
>>>>
>>>>Steve Jacobson
>>>>
>>>>On Sat, 1 Feb 2014 13:48:39 -0800, Mike Freeman wrote:
>>>>
>>>>>Beth:
>>>>>I absolutely agree with you! Although a few blind folks may have a 
>>>>>sleep disorder (I know of one such person), so do many sighted 
>>>>>people and it is
>>>>my
>>>>>experience that when most blind persons with sleeping problems are 
>>>>>put on
>>>a
>>>>>regular schedule (i.e., no odd hours, working a nine-to-five day,
>>>>>etc.)
>>>and
>>>>>get enough vigorous exercise, either on the job or as a program, 
>>>>>their
>>>>sleep
>>>>>problems disappear. For example, I know a lady who used to have 
>>>>>sleep problems when she wasn't working. But when she started 
>>>>>working a regular
>>>>day
>>>>>at a Head Start program, up and down all day with the kids, miracle 
>>>>>of miracles, her sleep problem disappeared!
>>>>>So I'm very much a doubter. Trouble is that when I voice such 
>>>>>skepticism with much vigor, I get a lot of push-back from other 
>>>>>blind people (both
>>>in
>>>>>ACB and NFB),maintaining I don't know what I'm talking about.
>>>>>Also, I know a couple of people who are participating in their 
>>>>>so-called studies and haven't received payment yet.
>>>>>Can you say "snake-oil"?
>>>>>Mike Freeman
>>>>>
>>>>>-----Original Message-----
>>>>>From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of 
>>>>>beth.wright at mindspring.com
>>>>>Sent: Saturday, February 01, 2014 1:33 PM
>>>>>To: nfb-talk at nfbnet.org
>>>>>Subject: [nfb-talk] A little concerned about this new drug aimed at
>>>totally
>>>>>blind population
>>>>>Hi, folks. Just wanted to see if I could get the scoop on this new 
>>>>>drug that's supposed to correct the sleep/wake cycles in people who 
>>>>>are
>>>totally
>>>>>blind. I'm totally blind myself, but haven't had any problems with 
>>>>>my
>>>sleep
>>>>>patterns, so, even though I've seen lots of ads for it on
>>>blindness-related
>>>>>web sites and know that they've been a major sponsor at our 
>>>>>conventions,
>>>I
>>>>>wasn't all that concerned about it one way or the other. As far as 
>>>>>I can tell, their ads have been pretty tastelike and their 
>>>>>recruitment
>>>>techniques,
>>>>>fairly low key. Lately, though, they seem to be ramping up the message.
>>>>From
>>>>>what I can tell, they now seem to be claiming that this sleep/wake 
>>>>>thing
>>>is
>>>>>a serious problem, affcting around eighty thousand people in the 
>>>>>US, the majority ofthe totally-blind population. I think that's 
>>>>>deceptive. I know that they need to reach the largest number of 
>>>>>people possible in order to make a sufficient profit, but I don't 
>>>>>think they should exaggerate the seriousness of this s o-called 
>>>>>disorder.


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