[nfb-talk] Vanda, what is all the fuss about?
Karen Rose
rosekm at earthlink.net
Mon Feb 3 03:59:36 UTC 2014
Chris – they are portraying blind people as unable to stay awake and concentrate at work throughout the day. I am a psychotherapist private practice. The last thing I need my list is to help people believe that I cannot stay away and thinking of them. But Karen
Sent from my iPhone
> On Feb 2, 2014, at 6:34 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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