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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