Cost of Nilotinib at Costco with a GoodRx coupon
4 dose packs (28 capsules) of Tasigna 150mg
the coupon price of $13,624.19
If there were 28 days in a month, $13, 624.19 X 12
a one-year supply at 150 mg/day would cost $163,490.28 in the US
If a PWP (such as myself) had a compounding pharmacy in China make the stuff, for 150 mg/day, it would cost
$54 per year
which means Novartis' cost to make one a year prescription
$5.40
alibaba.com/product-detail/...
Go figure.
Marc
You can get real Novartis nilotinib (TASIGINA from ADV CARE on line pharmacy in Canada for about $14000 per year.
ADV-CARE Pharmacy
Tel. #-1(888)471-4721
Fax #-1-877-948-0464
E-mail address: advphmarmacy.com/
You will need your Doc to send prescription directly to the pharmacy.
Thanks. This the real/same stuff. Nilotinib hydrochloride monohydrate. The problem is finding a doctor who will prescribe it off label.
I think if you could just manufacture drugs without having to develop them, their cost would be a lot lower. If you had to pay Novartis their research and development costs back as a lump sum, before you could start manufacturing the product, your first years production for one PWP would probably be tens of millions of dollars
The cost of the phase 2 trial for SPARK I am participating in is probably $13m . If that is a success, on the route to eventual general release there will need to be a phase 3 - add maybe $25m, there has already been a phase 1 - probably $3m, so over $40m on trial costs alone for this drug - never mind the costs of pre-trial research and development
Remind me how many times John Pepper has cause to trash Big Pharma research because every time it promises big possibilities but fails to make it to market. Shall we call it just the 10 failures - money straight up the chimney , pure loss, before one drug makes the grade? So $400m of upfront costs to recover once the one drug that succeeds makes it to market
If drug companies couldn't recover those costs with protected revenues during a patent period, they wouldn't be able to fund the research, and so the research wouldnt get done.
(Careful what you wish for. I want a cure, and much as I would love it to be discovered to be a yet to be identified herb, I'm not banking on it. So I want these guys spending money on research for the formulation which finally cracks it)
How much cost gets recovered by each supply of medication depends on the expected market size. In its initial purposing, Nilitonib was a treatment for a relatively rare condition, so loads of upfront cost divided by not so many patients.
If it had been effective for PWP, potentially the market would have been much larger, and with many more patients, the cost per patient would have fallen
But guess what? - It didn't make the grade for PD and so its protected price is still based on a market for cancer.
That said - the way health authorities negotiate prices to legitimately allow Pharma companies to recover R&D costs is not universal, and due to protection of a US manufacturing industry by the US government , you guys in the USA pay a lot more for your drugs than we do in France
Don't get me started on the pharmaceutical industry, but if you must, if you are going to point out that R&D is expensive, then what we're really talking about and the only thing that matters after everything is said and done -- is profit margin and Pfizer's profit margin is an eye watering 42% which is far, far better than most industries.
More important is that no one has any idea how much of their overhead has been slid into R&D and even more important than that is that they spend more on marketing than they do in R&D.
42%
42%
42%
bbc.com/news/business-28212223
There is a lot of things on this planet to feel sorry for and I do not count the pharmaceutical industry as 1 of them.
But that's just me. 
So, in other words, after we include all of the R&D and all of the costs of all of the drugs that go into trial and don't make it out, i.e., after all that and everything else is taken into consideration their margin of profit is 42% -- which means it doesn't matter what the cost of R&D is. It's an extremely lucrative industry making over $600,000,000,000 a year.
The problem in the US is the healthcare system is structured essentially to profit off of illness.
I rarely, if ever, find myself feeling sorry for Big Pharma. If I ever do I’ll follow Winston Churchill’s advice: lie down and wait for the feeling to pass (WC said that about exercise)
where does nilotinib stand now as far as potential for PD
The jury is not in. Topelo3, (Gary) who is on the evaluation committee of MJFF trial said,
“You’re correct, there are times when drugs work for subgroups of the larger cohort. Those analyses have not yet been done, but they will be soon. However, I believe the key point of the results was not the lack of any indication of efficacy. It was the biological and pharmacological data.”
As you probably read, Georgetown put out a report which is (a recent thread and) more positive, but they use the word, "may."
I didn't understand anything...
Thanks for that. I understand the Georgetown study has been criticized for its design of the test so maybe the positive results are not as good as they appear. It's the latest study that I have a hard time really understanding what they are saying. Can someone expand upon the statement that it's not the lack of efficacy but the biological and pharmacological data where the problem lies?
Others, such as WinnieThePoo and Topelo3, can explain this much better than I, but there can often be a change in the value of markers which does not translate into improvement of health or symptoms and conversely, as in this case, there is no change in markers, but there may be an improvement in the health of some subset of the cohort.
BUSHPILOTS - The theory of why Nilotinib is thought to have a therapeutic property for PD is that inhibits c-Abl, (a tyrosine kinase), which is involved with the regulation of alpha synuclein (I'm simplifying to try and not be too technical). The point I was trying to make is that Nilotinib doesn't pass well through the Blood-Brain-Barrier. In the MJFF funded trial the average range of bioavailability of the drug was 0.5% to 1.0%. The GU trial reported similar results. Because of this, it really is quite difficult to measure the efficacy of the drug, or test the theory that it is therapeutic for PD, because not enough of the drug is getting into the brain.
This does not mean that the theory isn't valid. Most, if not all, of us on the NILO-PD steering committee still believe that a c-Abl inhibitor can be disease modify for PD. We just need to test one that is a smaller molecule so it can better pass through the BBB.
Sun Pharma has begun a trial for their c-Abl inhibitor K0706. Inhibikase is developing a c-Abl inhibitor specifically for neurological use (not a repurposed leukemia drug like Nilotinib). 1ST Biotherapeutics is developing 1ST-102 for the same purpose. There are a few other repurposed drugs that are also being looked at.
So, basically, I think we have the right target, but nilotinib is the wrong drug.
Excellent info both of you. Thank you so much for the detailed replies.
Thank you Tupelo 3 and Bush pilot,
Do you feel then that all the PWP taking Nilotinib should discontinue? (If there is no reward, why take the risk?)
I feel it's relieved me of constipation probably because the are dopaminergic neurons in the gut?
I’m not a medical doctor so I really don’t want to give medical advice. That being said, our analysis of the top line data doesn’t indicate that the drug has a therapeutic benefit. We believe this is due to it’s quite limited brain penetration. But, keep in mind that the primary purpose of both trials was safety and tolerability. Efficacy measures were only secondary outcomes.
With regard to your very valid question regarding subgroups, those analyses have not yet been done. In may not be possible to get real good information for smaller groups as the sample sizes will be small and not powered to prove efficacy. We have offered to combine data sets with GU to increase size and power, but as of this time, that isn’t going to happen. Our data, and biological samples, will also be made available to other researchers who want to perform other analyses. Our hope is to make all of our data available so as to add to the research community knowledge and assist in future research. Hopefully, GU will do the same.
I realize these results are confusing and frustrating. I personally got involved in this research the day that GU released their first small trial results. On that day I began making the calls to find funding for a larger, better designed, clinical trial. It was my intention to be the first volunteer in a trial. Unfortunately, I didn’t qualify for a few reasons. Nevertheless, I’ve worked for the past two and a half years on this trial. So, it’s fair to say that I was quite disappointed and frustrated, when I saw the final results. But what can I say other than our results clearly showed that there was no rational reason to continue the trial. This decision was unanimous among the committee members. In fact, right after our review the data were presented to representatives at NINDS, and they fully agreed with our decision.
To sidetrack for a second, it’s quite interesting that neither trial came close to replicating the “miracle” results of the first trial GU reported.
Sorry to be so long winded about all of this, but as I mentioned, Nilotinib research has been a big part of my life for the past few years. It’s not ending the way I hoped it would. But, I have several other drugs I’ve identified as having good potential, so I’m moving on. Trust me, the last thing I’ll ever do is give up!
Don't be sorry for being long-winded. I'm happy to listen for as long as you want to talk.
So, your answer is loud and clear, but please tell me what you think of my belief that it's relieving me of constipation.
Marc
PS. Thank you ever so much for your dedication, perseverance, and commitment. It is people like you that save the rest of us.
Thanks Marc, I appreciate it.
Regarding your question (and it’s a great one) I’ve already noted it down to discuss with the scientists at our next meeting. Don’t worry, if it ends up having validity you’ll get all of the credit for the theory....lol.
My last question is; previously I asked you what you thought of the rumor that people deteriorate more quickly when they stop taking N and you replied that often people deteriorate when they stop taking a drug, suggesting that is the opposite of the placebo effect. By that do you mean they deteriorate because they believe they will deteriorate?
My wife just chimed in to say since there's a lot of things I can take for constipation, it's a pretty high risk drug for that purpose. I agree. It's been 3 years. I guess it's time to quit. I'm glad of it, too.
Big businesses are all run by people who work on the principle that they are entitled to charge what they please. In any patient's situation you have the choice of going without the medication or paying what they ask. It is the reason why I will do anything to avoid taking medication.
Rarely does big pharma discover anything, they acquire patents by buying companies, but through this expensive system of doing research it maintains its monopoly. When the "toy" breaks down (because of China or whatever), they will stop treating the mice and pull all the patents out of the drawers. Only then will there be unparalleled progress in medicine. especially in cancer. But I will already be gone to another life, so all these speeches are boring for me.
Big Pharma no longer even does its own development and trials. Uses government money and then these tiny scientific organizations develop the molecule and then when it shows promise big pharma buys them out and markets them through. That means that big pharma are not in the DRUG business, they are in the drug BUSINESS, they are financial companies and investment companies. That, by the way, is why they are known as the best investments in the planet, earning 4 times the rate of other companies in general (as an industry, gaining 25% per year, four times the average industry return...and thus price increases to investors in proportion). Go ask any investment advisor about that for proof. True for the last 30 years now, just intensified as the acceleration curve (those of you who passed O levels, or high school in the US) increases over into the vertical.
ETTERUS, VIVACE 1017 AND HIDDEN. HOW ARE YOU FEELING, SEVEN OR EIGHT YEARS POST DBS SURGERY?
what do you do when you feel a cold coming on?
Do many of you just feel Ill when off?I'm afraid to ask: Do you have a leg that always feels like you have a strained hamstring?
Is anyone here boosting their plasmalogen levels?
