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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