No reply from Dr. Moussa as of this am.
Tony

On 10/30/2015 2:52 AM, Rayilyn Brown wrote:
> John
>
> u r  probably right.
>
> I'm taking an affordable  blood pressure drug, isradipine, which is 
> presently  in a
> Parkinson's trial.  It has been  approved for safety for PWP;  I think 
> its
> in a  Phase 111 for efficacy.
>
> I have borderline hypertension, but my  neuro didn't have to specify what
> it was for when prescribing it.  in fact I've never seen an MD specify a
> disease when prescribing.   I see  my  neuro in 2 weeks and will discuss
> this.  there are PD trials using already approved drugs for other 
> diseases, which if affordable we could take if they help.
>
> Who do you suggest we pressure to do trials?      there were no emails on
> Georgetown site/I had to snail mail my ltr to Dr.  Pagan and it was 
> hard f or me, my hands are so bad.  Hope Tony's ltr got to Dr.Moussa.
>
> It might be a good idea to divide up the work.
>
> I will be  80 December 1st and figure haste  is  necessary.  Also, 
> although I knew  drug companies  screw the    public, I didn’t know 
> how bad it really was.  this brought  it home!
>
> -----Original Message----- From: John
> Sent: Thursday, October 29, 2015 11:51 AM
> To: [log in to unmask]
> Subject: Re: $10,000 a month for Nilotinib
>
> Ray, I think you are jumping too far ahead in this. I am impressed 
> with all
> your contacting Doctors and people at Novartis, BUT currently the drug is
> designed only for cancer patients, at some unknown dosage. What the 
> makeup,
> dosage, AND cost might be for use with PD is still a great unknown. We 
> need
> to first keep pressing somebody to begin the necessary trials so it 
> actually
> becomes an option. Then we can figure out who or what to fight over 
> costs.
>
> John, caregiver for Sue, PD since 2002.
>
>
>
> -----Original Message-----
>> From: Rayilyn Brown <[log in to unmask]>
>> Sent: Oct 28, 2015 6:56 PM
>> To: [log in to unmask]
>> Subject: Re: $10,000 a month for Nilotinib
>>
>> $3900 is still too much. I got quote of $8701 from SilverScript.  
>> LAUSD is
>> changing  me from Anthem Blue Cross ($50/mo reasonable) to Medicare 
>> Part  D
>> with SilverS Jan 2016.  plans are supposed to be comparable. However 
>> I got
>> SS quote on "Chat"and was only able to ask about cost.couldn’t type fast
>> enough to explain anything.  cant phone cause I cant speak
>>
>> how I hate this
>>
>> -----Original Message----- From: Trauti Boyd
>> Sent: Tuesday, October 27, 2015 3:50 PM
>> To: [log in to unmask]
>> Subject: Re: $10,000 a month for Nilotinib
>>
>> i will ask at our next appointment - so far i have not received an 
>> answer
>> to
>> the email i sent to my husband's neurologist.
>> the drug is available in canada for $3900/month. with the reduced dosage
>> given in the trial that should provide 3 months of off-label use.
>> i strongly doubt off-label use would be covered by insurance here and 
>> if it
>> did it probably would cost just about that much.
>> tier 4 - non-preferred brands - usually carries a 40% co-payment ...
>> trauti
>> ----- Original Message ----- From: "Robin Ruth" <[log in to unmask]>
>> To: <[log in to unmask]>
>> Sent: Monday, October 26, 2015 9:10 PM
>> Subject: Re: $10,000 a month for Nilotinib
>>
>>
>>> The cost of the drug aside, has anyone looked into the possibility of
>>> getting Nilotinib prescribed off-label for Parkinson's?
>>> Robin Ruth
>>>
>>> Sent from my iPhone
>>>
>>>> On Oct 25, 2015, at 8:06 PM, Rayilyn Brown <[log in to unmask]> wrote:
>>>>
>>>> a letter to Novartis from my good friend Ordell  Nelson:
>>>>
>>>> -----Original Message----- From: Ordell Nelson Sent: Sunday, 
>>>> October 25,
>>>> 2015 11:47 AM To: [log in to unmask] Subject: 
>>>> $10,000
>>>> a month for Nilotinib
>>>> Dear Ms. Scott:
>>>>
>>>> It is indeed wonderful news that Nilotinib will dramatically reduce 
>>>> the
>>>> symptoms of Parkinson's disease. Congratulations for being at the helm
>>>> of
>>>> this exciting venture.
>>>>
>>>> In contrast, it's horrendous news that you intend to charge Americans
>>>> $125,000 per year for this drug.  As you probably know better than
>>>> anybody, Pharma notoriously price gouges Americans. Study after study
>>>> has
>>>> shown that Americans are victims of Pharma's absurd prices.
>>>>
>>>> Should this be news to you, I'm glad to provide "A Brief Guide to Big
>>>> Pharma" at http://theweek.com/articles/583337/brief-guide-big-pharma
>>>>
>>>> Step aside from your Pharma pack, and take leadership with pricing
>>>> Nilotinib.  Please offer Nilotinib for an affordable price. How about
>>>> $1
>>>> per pill?
>>>>
>>>> With hope,
>>>> Ordell Nelson
>>>>
>>>>
>>>>
>>>>
>>>>
>>>> ----------------------------------------------------------------------
>>>> To sign-off Parkinsn send a message to:
>>>> mailto:[log in to unmask]
>>>> In the body of the message put: signoff parkinsn
>>>
>>> ----------------------------------------------------------------------
>>> To sign-off Parkinsn send a message to:
>>> mailto:[log in to unmask]
>>> In the body of the message put: signoff parkinsn
>>
>> ----------------------------------------------------------------------
>> To sign-off Parkinsn send a message to:
>> mailto:[log in to unmask]
>> In the body of the message put: signoff parkinsn
>>
>> ----------------------------------------------------------------------
>> To sign-off Parkinsn send a message to:
>> mailto:[log in to unmask]
>> In the body of the message put: signoff parkinsn
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to: 
> mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to: 
> mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
>

----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn