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

Karen Rose rosekm at earthlink.net
Sun Feb 2 23:05:27 UTC 2014


Although I do not have this disorder I see no problem with their drug. My beef is with their advertising agency

Sent from my iPhone

> On Feb 2, 2014, at 11:41 AM, "Michael Hingson" <Mike at michaelhingson.com> wrote:
> 
> 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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