[nfb-talk] Vanda, what is all the fuss about?
Nimer Jaber
nimerjaber1 at gmail.com
Tue Feb 4 16:28:02 UTC 2014
Oh good God shut up already.
-----Original Message-----
From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of Todor Fassl
Sent: Tuesday, February 4, 2014 10:24 AM
To: NFB Talk Mailing List
Subject: Re: [nfb-talk] Vanda, what is all the fuss about?
Look, there is nothing to keep a doctor from prescribing Viagra to every guy
who comes in saying he has a runny nose. That's an issue between a doctor
and his patient. In fact, the problem is more likely the other way around.
Patients hear about a drug in a commercial and go into
their doctors who then have to explain why the drug isn't for them.
That's a very common problem these days. This thing by Vanda is no different
than the thousands of other drugs at a doctor's disposal. Can it be
misprescribed? Of course. But so can the thousands of other drugs in the
PDR.
You people are jumping to the conclusion that doctors will be prescribing
this drug when it's not needed based on absolutely no factual evidence. In
fact, even if you are right about the commercial being misleading, (which I
don't grant, btw) the most likely effect is that blind people will be
annoying their doctors by coming in and asking for the drug when it doesn't
apply to their problem. The good news is that probably a lot of those people
will get other treatments they wouldn't normally have gotten.
Instead of trying to blame Vanda for injuries and deaths, imagine a
conversation between a doctor and a patient that goes like this:
Patient" I heard about this drug on the radio that helps blind people sleep.
Can I get some of that?
Doctor: You have trouble sleeping? You hadn't mentioned that before.
Patient: Well, I didn't consider it a huge problem.
Doctor: That drug is only for people who are totally blind or nearly so.
It's not likely that that drug will help you. Lets do a sleep study to find
out why you're having trouble sleeping.
Bingo, Vanda *saves* somebody's life.
On 02/03/14 16:39, Mary Donahue wrote:
> Good afternoon Ray and everyone,
>
> Suppose it may not be non-24? These last couple of Sundays, I have
> had trouble sleeping mainly because there has been quite a bit on my
> mind regarding personal matters. Last Sunday it was indigestion on
> account of something I ate that evening. These two Sundays of insomnia
> had nothing to do with me being totally blind and having non-24. I
> strongly recommend people receive sleep studies before receiving this
Vanda drug treatment.
> Just my two cents' worth.
>
> Mary Donahue
>
>
> -----Original Message-----
> From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of Ray
> Foret Jr
> Sent: Monday, February 03, 2014 3:10 PM
> To: NFB Talk Mailing List
> Subject: Re: [nfb-talk] Vanda, what is all the fuss about?
>
> Well, Chris, speaking for myself, I do happen to think I suffer
> somewhat from this non 24 thingy. However, I do have a sharp word of
> critisism for the radio adds. They make it sound as if all blind
> people suffer from it just by virtue of being blind. In other words,
> if a person is blind, they will automatically have this. Now, while I
> believe I do sufffer somewhat from this, and I believe others do too,
> I do not believe that all blind people, just because they're blind,
> suffer from it. I know you feel the same way. It's this tone of the
> radio spots that I have such a major issue with.
>
>
> 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 3, 2014, at 2:35 PM, Chris Nusbaum <dotkid.nusbaum at gmail.com>
wrote:
>
>> Karen,
>>
>> It's understandable that you feel the ad is making the listener
>> believe
> that all blind people suffer from Non-24. However, this does not
> detract from its being a real problem faced by *some* blind people,
> particularly those who are totally blind with no light perception. I
> myself experienced the symptoms of Non-24 for a long time, though I've
> somehow outgrown them now. Note that this was before Vanda began its
> research on Non-24 and nobody had a name for it--at least so far as I was
aware.
>> There are some blind people who continue to suffer from this disorder
> today. I know two of them very closely. Indeed, there are some who
> have difficulty staying awake at work or falling asleep at night. If
> this is true, then, what's the harm in the development of a drug which
> would cure this? Perhaps the implied message of the commercials was a
> little skewed, but I don't think we should discourage this research
because of it.
>> Chris
>>
>> -----Original Message-----
>> From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of
>> Karen Rose
>> Sent: Sunday, February 02, 2014 11:00 PM
>> To: NFB Talk Mailing List
>> Cc: NFB Talk Mailing List; <mike at michaelhingson.com>
>> Subject: Re: [nfb-talk] Vanda, what is all the fuss about?
>>
>> 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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