[nfb-talk] Vanda, what is all the fuss about?
Chris Nusbaum
dotkid.nusbaum at gmail.com
Mon Feb 3 02:40:03 UTC 2014
That's understandable. I guess I just didn't catch that.
Chris Nusbaum
Sent from my iPhone
> On Feb 2, 2014, at 9:37 PM, Ray Foret Jr <rforet7706 at comcast.net> wrote:
>
> The issue with the commercials is that they make the listener eroniously believe that all blind people suffer from this here Non 24 business. This ain’t true.
>
>
> Sent from my Mac, the only computer with full accessibility for the blind built-in!
>
> Sincerely,
> The Constantly Barefooted Ray, still a very happy Mac and Iphone 5 user!
>
>> On Feb 2, 2014, at 8:34 PM, Chris Nusbaum <dotkid.nusbaum at gmail.com> wrote:
>>
>> Mike and Others,
>>
>> I must say that I am confused as to the apparent problem in the Vanda ads. I
>> have only heard the radio ads, which began in a way which concerned me
>> slightly. The supposedly blind man who did the voiceover said: "You can't
>> see me because of radio, and I can't see you because I'm totally blind."
>> However, he added immediately after this statement: "I don't let my
>> blindness stop me." I believe in a positive portrayal of blindness in the
>> media as much as the next Federationist, but I am puzzled as to what the
>> problem was in the commercials. Clarification, please?
>>
>> Chris
>>
>> -----Original Message-----
>> From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of Michael
>> Hingson
>> Sent: Sunday, February 02, 2014 6:57 PM
>> To: 'NFB Talk Mailing List'
>> Subject: Re: [nfb-talk] Vanda, what is all the fuss about?
>>
>> Understandable.
>>
>> -----Original Message-----
>> From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of Karen Rose
>> Sent: Sunday, February 02, 2014 03:05 PM
>> To: mike at michaelhingson.com; NFB Talk Mailing List
>> Cc: NFB Talk Mailing List
>> Subject: Re: [nfb-talk] Vanda, what is all the fuss about?
>>
>> 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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