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PARKINSN Archives
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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
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Week 4 June 1999, Week 3 June 1999, Week 2 June 1999, Week 1 May 1999, Week 5 May 1999, Week 4 May 1999, Week 3 May 1999, Week 2 May 1999, Week 1 April 1999, Week 5 April 1999, Week 4 April 1999, Week 3 April 1999, Week 2 April 1999, Week 1 March 1999, Week 5 March 1999, Week 4 March 1999, Week 3 March 1999, Week 2 March 1999, Week 1 February 1999, Week 4 February 1999, Week 3 February 1999, Week 2 February 1999, Week 1 January 1999, Week 5 January 1999, Week 4 January 1999, Week 3 January 1999, Week 2 January 1999, Week 1 December 1998, Week 5 December 1998, Week 4 December 1998, Week 3 December 1998, Week 2 December 1998, Week 1 November 1998, Week 5 November 1998, Week 4 November 1998, Week 3 November 1998, Week 2 November 1998, Week 1 October 1998, Week 5 October 1998, Week 4 October 1998, Week 3 October 1998, Week 2 October 1998, Week 1 September 1998, Week 5 September 1998, Week 4 September 1998, Week 3 September 1998, Week 2 September 1998, Week 1 August 1998, Week 5 August 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Week 4 October 1997, Week 3 October 1997, Week 2 October 1997, Week 1 September 1997, Week 5 September 1997, Week 4 September 1997, Week 3 September 1997, Week 2 September 1997, Week 1 August 1997, Week 5 August 1997, Week 4 August 1997, Week 3 August 1997, Week 2 August 1997, Week 1 July 1997, Week 5 July 1997, Week 4 July 1997, Week 3 July 1997, Week 2 July 1997, Week 1 June 1997, Week 5 June 1997, Week 4 June 1997, Week 3 June 1997, Week 2 June 1997, Week 1 May 1997, Week 5 May 1997, Week 4 May 1997, Week 3 May 1997, Week 2 May 1997, Week 1 April 1997, Week 5 April 1997, Week 4 April 1997, Week 3 April 1997, Week 2 April 1997, Week 1 March 1997, Week 5 March 1997, Week 4 March 1997, Week 3 March 1997, Week 2 March 1997, Week 1 February 1997, Week 5 February 1997, Week 4 February 1997, Week 3 February 1997, Week 2 February 1997, Week 1 January 1997, Week 5 January 1997, Week 4 January 1997, Week 3 January 1997, Week 2 January 1997, Week 1 December 1996, Week 5 December 1996, Week 4 December 1996, Week 3 December 1996, Week 2 December 1996, Week 1 November 1996, Week 5 November 1996, Week 4 November 1996, Week 3 November 1996, Week 2 November 1996, Week 1 October 1996, Week 5 October 1996, Week 4 October 1996, Week 3 October 1996, Week 2 October 1996, Week 1 September 1996, Week 5 September 1996, Week 4 September 1996, Week 3 September 1996, Week 2 September 1996, Week 1 August 1996, Week 5 August 1996, Week 4 August 1996, Week 3 August 1996, Week 2 August 1996, Week 1 July 1996, Week 5 July 1996, Week 4 July 1996, Week 3 July 1996, Week 2 July 1996, Week 1 June 1996, Week 5 June 1996, Week 4 June 1996, Week 3 June 1996, Week 2 June 1996, Week 1 May 1996, Week 5 May 1996, Week 4 May 1996, Week 3 May 1996, Week 2 May 1996, Week 1 April 1996, Week 5 April 1996, Week 4 April 1996, Week 3 April 1996, Week 2 April 1996, Week 1 March 1996, Week 5 March 1996, Week 4 March 1996, Week 3 March 1996, Week 2 March 1996, Week 1 February 1996, Week 5 February 1996, Week 4 February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 1995, Week 4 April 1995, Week 3 April 1995, Week 2 April 1995, Week 1 March 1995, Week 5 March 1995, Week 4 March 1995, Week 3 March 1995, Week 2 March 1995, Week 1 February 1995, Week 4 February 1995, Week 3 February 1995, Week 2 February 1995, Week 1 January 1995, Week 5 January 1995, Week 4 January 1995, Week 3 January 1995, Week 2 January 1995, Week 1 December 1994, Week 5 December 1994, Week 4 December 1994, Week 3 December 1994, Week 2 December 1994, Week 1 November 1994, Week 5 November 1994, Week 4 November 1994, Week 3 November 1994, Week 2 November 1994, Week 1 October 1994, Week 5 October 1994, Week 4 October 1994, Week 3 October 1994, Week 2 October 1994, Week 1 September 1994, Week 5 September 1994, Week 4 September 1994, Week 3 September 1994, Week 2 September 1994, Week 1 August 1994, Week 5 August 1994, Week 4 August 1994, Week 3 August 1994, Week 2 August 1994, Week 1 July 1994, Week 5 July 1994, Week 4 July 1994, Week 3 July 1994, Week 2 July 1994, Week 1 June 1994, Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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