Senator Bernie Sanders, the new Chairman of the Senate HELP Committee, is seeking input from fellow warriors about experiences with Xtandi and other exorbitantly priced anti-androgen drugs.
Exorbitant Price of Xtandi: Senator... - Advanced Prostate...
Exorbitant Price of Xtandi
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Survivor86
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Hello,
When I see figures like $190,000.00 (USD) for drugs like Xtandi (enzalutamide) I just shake my head. I took Xtandi for five years and it cost me nothing. America needs a health plan for all citizens that pays for life saving drugs.
Where do you live?
British Columbia, Canada.
Me too. i am going to ask about enza. i'n on abi now.
Hi,
That is quite the coincidence as I was on Xtandi (enzalutamide) for nearly five years and I have recently (October, 2022) switched to Zytiga plus Prednisone (abiraterone). It might not be as easy as you think. Xtandi and Zytiga are considered the Pepsi and Coke of second tier hormone drugs. The pharmacist at our closest B.C. Cancer Agency (BCCA) told me five years ago that once you choose one you cannot switch to the other. The provincial medical plan will not fund it. Supposedly, the only reason I was able to make the switch to Zytiga is that I am enrolled in the SPLASH clinical trial and their funding comes directly from the drug company (Point Bio-Pharma). In other words, the clinical trial folks are independent of BC Med and can make up their own rules. Let know if your team allows you to do that. Good luck!
interesting. Thanks.
Feel the Bern!
Isn't true that universities enjoy a special exemption from government contracting rules that allow them to retain exclusive rights (and thus the ability to license those rights) to the contract-funded R&D results? I'll be pleased to be corrected by someone who understands the Federal Acquisition Regulations.
Yes, but one of the conditions of patents for discoveries funded by U.S. taxpayers is that they be made “available to the public on reasonable terms.” [35 U.S.C. Sec. 201. (f)].
According to a September 9, 2021 report on excessive drug prices issued by the Department of Health & Human Services, “the federal government may grant a license to use the intellectual property arising from government funding without the permission of the rights-holder including when ‘action is necessary to alleviate public health and safety needs which are not being reasonably satisfied’ or when the benefits of the patented product are not ‘available to the public on reasonable terms.’”
In the case of Xtandi, a petition calling upon HHS to do is currently pending before HHS and NIH.
Survivor86: Thanks for your clear answer to my and other questions in this thread. You seem to have a particularly good understanding of this subject matter. Do you or did you once work in this field?
Thanks for your kind words. I am a retired regulatory attorney but never practiced in the health care field. As both a 37-year non-Hodgkins lymphoma survivor and a 7.5 year advanced prostate cancer survivor, I’ve tried to learn as much as I can about my cancer, including treatment options, and occasionally find that my legal training is helpful.
No new legislation needed, at least for prescription drugs whose discoveries have been funded with taxpayer dollars. If the U.S. Government exercised its patent rights either to create competition by awarding additional licenses or negotiate with drug companies, prices in the U.S could be substantially reduced. For example if Japanese drugmaker Astellas charged U.S. cancer patients the same price it charges for Xtandi in Japan, it’s U.S. price would be one-sixth of what it is today.
My husband received a “grant” from the manufacturer for the first 6 months of Xtandi in 2021. When the calendar flipped to 2022 we had to reapply and they told us our out of pocket cost would be $2,000.00 per month, nearly his entire Social Security check. We told them he would just stop taking it. They immediately approved him for the grant again as they obviously would rather get the $9,000.00 per month United Healthcare was willing to pay and subsidize the $2,000.00 (total cost $11,000.00 per month) than nothing. So it’s sickening that you need to play this game with them, but if you have insurance that will pay less than the full price, be sure to apply for assistance and threaten to just stop taking it if they deny you.
Same with me last summer, I got pharmacy help and epic from the state so it cost me only 20 dollars a month but did not work on the cancer, instead it went to the lymph, lung, bladder and the liver. Now doing chemo so we will see how that goes since last September but PSA is rising so off for a scan next week. You can get extra help at some hospitals for medical treatments and the hospital pharmacy, you just have to ask, good lucknand God bless. The bladder is gone as is some of the nodes and the largest liver met is smaller, I hope they find what is going on.
I hope they sort your issues. After eight years of P/C stage 3 last year I had seven months of Chemo which worked reducing PSA until the 6th month and then started to reverse. Not a pleasant time. Stopped treatment and one month later went onto Xtandi (4 times daily) during which time I lost 10kg in weight mainly from Chest and arms fat. Xtandi psa similar experience with PSA, now stopped. Onco baffled by change. Never had any pain from P/c nor had radiation therapy but will I be able to put back on the brown fat? Legs seemingly unaffected. Recently had Cellulitus on torso and back. perhaps it was to blame? Struggle on.
I hope everything turns out ok, this disease is frustrating enough. I have been doing carbo alone since last September, the side effects are a little rough but better than the alternative. The last scan in December was a definite improvement so that was good, PSA was holding in the 20s but the last two were in the 30s and this one Weds was 50 , the reason for the CT scan (last one was in December of last year) was 3 months ago. A bone scan in January just showed a bone infection and a compression fracture so it was all good. Want to stay on treatment as long as possible due to the liver Mets, it did help them. I will be following you and good luck, wish you the best and God bless you and your family.
Your $$$ experience with the drug is the most like mine. I have played this game for three calendar years now. It's not a difficult game, ya just have to identify who the players are when the phone rings and be straight up with them to get assistance. No, I don't like being put in such a position. XT is a Tier 5 drug. My insurance approved their 2/3's, which would leave me on the hook for the other 1/3 each month. (Fla.) Seriously, that wasn't going to happen because that couldn't happen. They say ok and that's it. It's an all or nothing proposition. I apologize for repeating what Battle_on had to say, but I thought it was worth repeating. Good luck to all. Keep up the fight. Exercise, diet, sleep.
The most important thing is that your husband is receiving his prescribed treatment. But it’s outrageous that Astellas employs marketing schemes like this to gouge cancer patients and payors. In 2021 alone, Medicare alone paid out nearly $2 Billion for Xtandi. Our tax dollars for a drug discovered by UCLA researchers with grants from NIH and DoD!
Buy xtandi from India.
Magnus—Thanks for your suggestion. The importation of prescription drugs from India is not a subject I‘ve researched. As I’ve started to read about this I came across the attached KFF, formerly known as the Kaiser Family Foundation, July 2021 issues brief about drug importation. As you may know, KFF is a respected not-for-profit organization in the health policy area. While not specific to Xtandi, the KFF paper may be of interest to you and others. kff.org/0a6df09/.
So you are ok to order from India:
Currently, the only type of legally imported drugs are those that are: 1) manufactured in foreign FDA-inspected facilities, the subject of an FDA-approved drug application, intended for use by U.S. consumers, and imported into the U.S. by the drug manufacturer, and 2) those that are U.S.-approved and manufactured in the U.S., sent abroad, then imported back into the U.S.
You can find xtandi manufactured by AstraZeneca at IndiaMart.com
Magnus
You ever used indiamart ? I saw this & downloaddd app,gave them my email address but not my tel number & within 5 min i had 30 emails from them,had to block block block
Never give out contact info in IndiaMart. Just pick you product and seller.
Thanks again!
I have read quite a lot about Xtandi. In 2005 UCLA licensed a small CA biotech Medivation to commercialize Xtandi in exchange for a share of future revenues. In 2009, Medivation sublicensed global distribution rights and a 50 percent interest in U.S. distribution rights to Japanese drugmaker Astellas, part of the Mitsubishi Financial Group, for $765 million. Astellas claims that $1.4 billion was spent to obtain FDA approvals.
Pfizer’s $14 billion acquisition of Medivation and its remaining 50 percent interest in U.S. distribution of Xtandi did not occur until 2016, several years after initial FDA approvals for Xtandi were granted. At that time, Pfizer Chairman and CEO Ian Read told Wall Street: “The proposed acquisition of Medivation is expected to immediately accelerate revenue growth and drive overall earnings potential for Pfizer “ To date, global sales of Xtandi have totaled almost $25 billion—a majority of which has come from U.S. prostate cancer patients, Medicare and other insurers.
Respectfully, responsibility for the exorbitant and discriminatory U.S. price of Xtandi rests solely with Astellas and Pfizer. Responsibility for not enforcing the 1980 Bayh-Dole Act requirement that discoveries funded by taxpayers be “made available to the public on reasonable terms” rests with a succession of U.S. Administrations. I’m not expert on patent law but to my knowledge the Bayh-Dole Act did not authorize the U.S Government to collect royalties on patented taxpayer funded discoveries.
"Respectfully, responsibility for the exorbitant and discriminatory U.S. price of Xtandi rests solely with Astellas and Pfizer"
au contraire, mon frère
They are just making use of a system that was designed, bought and paid for to support this very economic activity.
Maybe... how about blaming the approximately 80% of the old men prostate cancer patients here who reliably vote for the party that built and supports this system? And who will find a way to continue to rationalize doing so because of the emotional satisfaction it gives them.
This is starting to sound like a John Grisham novel. Or a slaughter movie. To many murders to count.
Runs over, hugs Monte and says..................................... holy moley you smell terrible....
Long time no see!!! Welcome!!!
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 03/02/2023 8:22 PM EST
I'm glad you left the light on. You must have bought some new spikes. I'm sure you'll hammer them through a few hearts. Speaking of smelling terrible, I think RonRon saw someone wearing your old spikes.
I strongly disagree with your characterization and as fellow warriors engaged in the battle with advanced metastatic prostate cancer hope we can respectfully disagree with one another. My post on this subject was intended to let others know that Senator Sanders, as the new chairman of the Senate HELP Committee, is seeking information about prostate cancer patients’ experiences Xtandi.
In response to your reply, I am familiar with the 1980 Bayh-Dole Act and its legislative history. In this regard, the January 2001 Tulane Law Review contains a comprehensive analysis by health economist Peter Arno and Michael H. Davis, Esq. of the “reasonable terms” language and related provisions of Bayh-Dole. I recommend it to you. I’m also familiar with Mr. Allen’s article and would point out that it fails to address the provision of Bayh-Dole requiring discoveries funded by U.S. taxpayers be made “available on reasonable terms to the public.” [35 U.S.C. Sec. 201 (f)]
Personally, I believe innovation and reasonable drug pricing need not be mutually exclusive and the plain language of Sec. 201 (f) suggests Congress did not when it enacted Bayh-Dole.
For anyone interested in learning more about this subject as it pertains to Xtandi, the website of Knowledge Ecology International, a not-for-profit consumer organization specializing in intellectual property issues, contains a wealth of information. By searching “Xtandi” on KEI’s website you’ll find it.
Thank you for your explanation/refutation of the Jos Allen article; I think I speak for many when I say this forum needs to hear from you more often.
I guess $35 for a tube of E2 gel that lasts me 3 weeks is not that bad! And absolutely no side effects (just some small boobs), and NO doctor visits.
You should start an import business into the USA!
One of our comrades in The US wants me to send him 10 tubes. I had sent 25 tubes to a couple of men in the South.
There is nothing to see here.
Nothing can happen while the house of representatives is in Republican hands.
IMO. Adding political opinion and divisive comments to this forum is not helpful. There are many other discussion platforms that are intended for political discourse.
The very subject of this thread is about politics: "Senator Bernie Sanders, the new Chairman of the Senate HELP Committee,"
LOLOLOLOLOL
Are you sure that it is, that you don't want to expose your ears to opinions that you do not agree with?
Instead of imposing yourself on others, you have alternatives. You can just move on and not partake of this post. How about that for an idea? It won't fly in Florida, but why not here?
If you can't contribute anything positive to this post, why don't you just skip it instead of attempting to interfere with the exchange of information amongst others?
Is that really so hard to do? Is it really such an imposition?
Please consider this as an alternative option.
Thank you
i suggest that you follow your own advice. Your opinions are just that. Yours alone.
You are off topic, please take this to private messaging.
Oh and thanks for the increased health costs.
Isn't that response a bit overheated?
I certainly thought it was. That's why I responded with equal vigor.
You have to set boundaries when your crazy neighbor walks on over as you are tending to your lawn and officiously starts ordering you to do it his way because... well he is entitled to order you around because.... well like it's his lawn.
Or they try to put your daughter in jail for having a medical procedure they don't approve of.
And they attempt to normalize that behavior. Like there in nothing wrong with it.
Why don't you give a piece of your mind as well.
In private chat of course.
Thank you for your support.
Not sure I get this one....Lu-177, I will look and get the exact cost in India but I will say I think and again I will go check my invoice , I think it is in the 2K range for each infusion . My total cost at Fortis is less than 7K including doctor, hospital admission, scans and infusion. I know the PSMA scan is around 495.00 but will check that too. The Lu-177 is shipped from Munich where it is produced. ITM Germany has other reactors around the world including Canada. Lu-177 here is being marketed at 41,000.00 an infusion. Novartis produces most of the in country under Pluvicto so how is the US subsidizing this drug if it was developed and used overseas for many years? Blue Skies
The company that distributes xtandi is obviously aware the cost is prohibitive or they would not offer programs such as this:
Eli LILY just reduced their price on insulin a few days ago, and put a price CAP of 35 dollars on it.
This also happens with other expensive drugs.
This should not be a political issue because it impacts everyone, however the solution to this is going to require Congress to be involved.
Not sure about 190K. Is that per dose? As far as other countries are concerned, in the UK for example, the issue is long delay in approval. So what is the alternative? You can get equivalent to the best SoC in SE Asia and Asia countries for a lot less. It is still burdensome, but not unaffordable. No surprise some of these countries are booming medical tourism and retirement centers. The good weather helps too. Some may have to overcome a bit of initial negative image, perhaps. But the reward is a pleasant surprise.
So that is the 10 cents worth from a layman. Dont mind me.
$189,900 is the 2022 Redbook Average Wholesale Price (list price before discounts) commonly used to compare U.S. prescription drug prices with those of other highly developed nations. It is for a standard daily dose of four 40mg capsules based upon a 365 day year. (The Drugs.com discounted U.S. price as of January, 2022 was $165,241, still multiple times higher than in other wealthy countries).
Xtandi has a patient assistance program that is pretty easy to qualify for, it’s listed on their website. If you are accepted you receive it free of charge.
Ed
Between the 2 pill form drugs I currently consume, I'm a $1,000 per day man! Lol... But my circumstances allow for $0.00 co-pay! I'm regularly humbled when I read these posts and about patients who might be denied for various reasons, but affordability should not be one reason at all 
My recent foray into Olaparib had my insurance initially contact me, explaining my co-pay would be almost $4k per month... I straightened them out though and the result was as noted above. We must all stay vigilant in our care, and our costs, etc.
What's even more wild is if you examine the research form (lab quality) of the drug and it's cost, which is sometimes 10x what we pay... It's a vicious cycle, but one we benefit from. I know this because my son, the Chemist and his fiance, the Bio-Chemist looked it up when I discussed my next step(s) over the past holidays.
What encouragement would exist, if our current risk/reward system (financial) didn't exist? What other form could be put in it's place, that would provide the encouragement to invest millions on failed research, then billions on the ones that work, yet set a ceiling on profitability, and maintain ease of access to all? Not an easy answer... I have problems with the industrial medical complex, but it "IS" a business after all, and I must accept that fact as it is our current reality. I know I'm in a different place in regard to accessibility, and I'm grateful in a way that I am, always forever humble. But do believe if we cut the purse strings, we will stifle research and encouragement to develop some of the advanced drugs and treatments we are seeing today, let alone the velocity they seem to have taken lately.
Just spitballing my thoughts here.
All the best regards!
Here are the questions I always have on that topic:
Other countries with a variety of state funded medical arrangements do have robust research and drug development. How are the drivers there different?
Prostate cancer is clearly lucrative from a drug standpoint…but what about diseases that aren’t, what drives development when there won’t be enough profit at the end?
What level of profit is actually fair…especially considering that a significant amount of that profit is born by taxpayer funded plans like Medicaid or Medicare? How do we determine what is fair and who gets to decide?
At the end of it all these are ethical and value based questions and the money comes into play….in the US we have made a clear decision that on some level someone must pay and someone must profit and we see news stories every day about loss of life and loss of quality of life on our current path. A moving train is hard to stop, and we seem to have very little incentive to do so.
Well this thread is at least entertaining. The positive thing is that the issue is now getting lots of public attention which may lean the equation towards less exploitation of American consumers t(if ever so slowly). In the meantime I take some solace in owning a Healthcare no load mutual fund, and so shares in the whole industry, including big pharma and insurers. So some small share of excess profits flow back to my pocket. Jus a bit. Drip drip.
Hahaha, I hadn't thought of that :). Great way to get some $ back! Kinda like a cash back credit card! Hahahaha... Laughing for real!
Awesome 👍
I agree the business model for drug development is in need of reform. It's a bad system but my understanding is that most people who need this Xtandi can find a way to get it. This miracle drug has kept me alive the last 2 years and like many on this forum I'm looking for the next medication to keep me above ground.
I will try not to get political, but Bernie Sanders has been advocating socialized medicine and government control of all drug prices for decades. This is an incremental step in his agenda. I'm not smart or informed enough to address all the intricacies of this drug development and drug pricing but I know that innovation will be drastically hampered if Senator Sanders succeeds. UCLA may done the research for Xtandi with government paid scientists but my understanding is that's why you have royalties. Universities (and governments) aren't capable of bringing a drug to market.
Most of us are living on borrowed time and looking for the next breakthrough to keep us alive. IMHO follow the money, the reality is if drug developers don't think they can cover their huge upfront costs (with a 92% failure rate on new drugs) and yes make "exorbitant" profits, there will not be future Xtandi's. My recommendation is DON'T cooperate with Senate HELP Committee!
We have a pathetic government that has all their priorities wrong. To support perpetual wars and Gender classes to handing out free money to every citizen for a so called pandemic that was produced in a China Lab and not blinking at spending a Trillion Dollars every decade for outdated arms for those wars is insulting. And it doesn’t help when you have a funded media by companies like Pfizer promoting drugs that start at $500 to 15k per month. The ad revenue is in the billions to fleece the American public and bankrupt insurance companies. Government never puts a cap on spending so this clown show will continue.
Over $100bln US tax "dollars" and counting to Ukraine's proxy war that "The Bern" eagerly and loyally voted for. Maybe I got a bit lost in the number of zeros but my math says that @ $190k/treatment that sum could have treated over 525k PCa patients with Xtandi. My money says Congress skimmed handsomely off that pile without notice even after the "Big Guy" got his 10%. The Bern and his merry band of bi-partisan congressional "friends and colleagues" can all go ...... "It's a big club and you ain't in it" - G. Carlin.
What a circus. j. o-h-n
More like a Vampire convention.....(I want to suck your blood before it clots)....
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 03/02/2023 10:46 PM EST
Last Vampire Standing. Great idea for a reality TV show.
I think the show should be named "Last Vampire sucking"..........
If a male Vampire is called a Count..... what is a female Vampire called?
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 03/03/2023 7:57 PM EST
Wow.
Countess........
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 03/04/2023 6:26 PM EST
Stick it to the old guys. Allow student loan money. WTF?
have drug ins but Xtandi still cost me $750 plus each month
Seeing these American prices always makes me thank the generic drug industry in India. I get a month of Abiraterone for $130 (500mgx60). I guess generic Enzalutamide costs roughly the same as Abi.
you missed my point.
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