Xtandi Copay

Does everyone have such a high co-pay for Xtandi? A little over $2,000? Absolutely outrageous! How is anyone supposed to afford that that cannot get a grant? They are searching around for Grants that may help with this copay. Does everyone experience the same dilemma? I am wondering if the 2000 co-pay is for a month 2 months Etc. Wow! We had not received it in the mail or we had not received a call so I put in a call to the Dr and she said she would check into it and then we received a call from a specialty pharmacy today. Waiting on a call back today or tomorrow. Wondering what else is out there if this does not work by getting a grant. I am guessing the doctor will help us out by figuring out another medication option possibly if that is the case.

Jackie

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  • I found a website that has information on patient assistance. Go to (Astellas Pharma Supprot Solutions) astellaspharmasupportsolutions.com and in the search box put Xtandi. If they strip out the website just Google Xtandi patient assistance programs.

  • Thanks so very much noirhole!

  • Jackie, if you can not get any satisfaction, has he done ketoconazole?

    Dan

  • No Keto yet Dan. We will work it out one way or another with the xtandi. Thank you ;)

  • Sadly, that level of co-pay is pretty standard with most insurances including many Medicare plans. Have you approached Medivation-Astellas themselves? I believe that's what @noirhole is suggesting.

    I too was looking for a grant to cover an expensive off-label immunotherapy drug for one of the men I have been assisting. Earlier today I spoke with four different sources including the Zero/ PAN fund, Good Days, Patient Advocate Foundation & Cancer Care; they are all tapped out for PCa or in the case of Cancer Care, don't support it right now.

    Is the man in question eligible for the VA? If so, you can obtain the drug for a minimal co-pay .... $8/month; however, you have to jump through a few hoops to get to that point. Btw, it does not mean you have to receive your treatment at the VA although you will have to see their docs to get the drugs.

    Onward & upwards, rd

  • Disappointing news to say the least.

  • If the man in question is vet then post back here and I can get my started with the system. If he is then I would strongly suggest that he use the VA system. I used it for my PC operation and other treatment six years ago and I just couldn't say enough about the service that I received. It didn't cost me 1 cent for operation and continuing followup treatment.

    The "jump through a few hoops" is negligible. All I needed was my DD214.

    Hope that this helps.

  • @jgmcbride ... my 'jump though hoops' comment is not meant to reference getting into the VA system.

    However, to access enzalutamide (Xtandi) from a standing start, the patient has to see a number of docs .... GP, urologist, then medical oncologist. Also, last year at least, the VA kept a very close eye on Xtandi patients requiring visits every couple of weeks - that may have been relaxed.

  • I didn't take your comment as a negative. I just wanted to clarify that the system is not very difficult. Once you are in the system everything is pretty easy.

  • That information is very helpful also because we do not have time to do all those things before starting the medication.

  • Sorry this thread is so disjointed Jackie ..... I would start the VA process asap. In the meantime, it may mean you have to pay privately for one month of Xtandi before accessing through the VA.

    The drug also comes via a specialty pharmacy, and that can also take a little time. I think this is true in both systems.

  • Thank you Ardeee ;)

  • That is so very helpful jgmcbride. In case you did not read my previous post before this one if signing up for VA Health Care do you have to see them for everything? Are you able to go outside of the VA system to get health care besides going to the doctor to get your prescriptions written? Thank you so very much. Jackie

  • Thank you Ardee! That is all very helpful and we are wondering if he signs up for VA Medical Care does he have to do everything through the VA? We do not want to be stuck with having to just see them for any health issues including PCA. That is one of our major concerns.

  • Simple answer ... No. If you have private insurance you can go elsewhere get your prescription and then visit the VA. You will have to see a doctor there who will prescribe the same medicine and then you pay just $8.00 per month for the prescription. Remember that they may fill it with a generic prescription.

    If the sickness / injury is service connected (eg. the person served in Vietnam and now has prostate cancer (among others) he is entitled to compensation. This is the situation with me.

    I use the VA for all of my medical care. I had private insurance during my working life and I actually prefer the VA system and how it is set up. I have never been refused any test that I have requested. Wait time generally very short. If fact when I asked for an EKG in March it was immediately approved and I had it completed and had the results 45 minutes later.

  • Thank you so very much jgmcbride! He is also agent orange but we have me not signed him up for the health care and prescriptions. We should have sought out this info sooner about big tied only to the VA or not.

  • If your husband has Agent Orange benefits, it should be a breeze to move into health care.

    I know several men who use the VA solely for their medications - as @jgmcbride says, these very expensive second line anti-androgens cost just &8/month! In fact, you can get all your meds via the VA.

    SF VA is staffed by UCSF genitourinary medical onoclogists so the care is good. However my friends still prefer to go directly to UCSF where they can access more advanced treatments.

    As mentioned above, you will need to see a GP, then a urologist before finally reaching the med onc who can prescribe enzalutamide. This can take a little time, so get cracking.

    I am not sure of the VA's stance on Xofigo/Radium 223 - does anyone have experience? And how about genome testing?

  • We are so grateful for the information. We are going to get started. Thanks so much for sharing ;)

  • This is going to be a long post. From what I have gathered so far you are a Vietnam Vet - hopefully honorably discharged and are now suffering from prostate cancer. Your VA treatment hinges on being honorably discharged. First thing to do is to download form VBA-21-526EZ - link is here

    vba.va.gov/pubs/forms/VBA-2...

    I would drop everything and do this immediately - it does not need all supporting documents but it will get the ball rolling and more importantly it establishes your date of compensation. You have two days to do this before the end of the month. I would do it today and send it off registered letter. The reason is that you will be automatically awarded 100% compensation starting on the date of claim and the claim date starts on the date of posting. If you get it off before the end of this month (2 days) you will get compensation for the full month. You will be automatically awarded 100% disability and maintain that for some time until such time as they deem you cancer free and then the rate will be reduced. I will not state the monthly compensation amount but it is substantial (you will be surprised) and you can find it out online. Nothing is hidden about the process.

    SUBMIT THE FORM TODAY OR TOMORROW - DO NOT DELAY OR IT WILL COST YOU A FULL MONTH OF COMPENSATION.

    I did not invent the system but merely follow the procedures. All of this stems from a court case many years ago whereby Vietnam Veterans filed a claim against the US Government due to medical problems as a result of our exposure to agent orange in Vietnam. It was settled and they came up with a list of presumptive illnesses caused by Agent Orange - PC is one of them.

    Now to follow up on this. Get to your nearest VA center as soon as you can and bring your DD214 with you. It may all seem confusing and overwhelming initially but pretty soon you will know your way around the center. Go to registration and get yourself registered. They will issue you an ID card. On the same day find you the Center's Agent Orange person and go there and get an appointment for a checkup. They will do a complete checkup for you. At some point you will be assigned a primary care nurse/doctor who will become your point of contact. When you get this express your need to get an appointment with Urology. Once you are referred to Urology I would go to that department and ask if they can fit you into the schedule quicker ... you may ask them to call you if they have a cancellation that you can fill (hopefully you can get there in an hour or two). I have been able to get to see a Urologist within 24 hours previously.

    You might also want to visit Social Services and speak with them if you are anyway nervous about the whole system - they can be helpful guiding you and making you aware of other benefits.

    Keep track of your mileage to and from the center. When you get your 100% rating your will be eligible for travel compensation so when therating comes through you can submit your travel expenses claim from your first day of visiting the VA.

    While at the center as where the VA services offices are (many of the Veterans Organizations have offices at the centers). They can help you with your claim. In your case I would probably start with the Vietnam Veterans of America - they have a web site - and go through their Service Officer - other Vets organizations have similar setups.

    You need not use the VA for all of your medical care but just as I did may end up using them for everything. I go to the Manhattan VA and they use the doctors from NYU Medical Center - a world renown medical center.

    Most important takeaway is to get the form submitted by registered letter before Sunday. It need not be complete. Next is to get to the

    VA center and get yourself registered.

    Once you get your 100% rating you are now eligible for free dental care too. I have gotten a dental implant through them free of charge. So this is another benefit.

    Hope that all of this helps. Accept what life has dealt you and don't give up the fight. I had a Radical Prostectemy in Jan 2010 at the Manhattan VA and am still around.

  • and disability pay is tax free.

  • Jgmcbride thank you so much for the in depth instructions ;-) so much so very much appreciate all of that. We stumbled across Agent Orange a couple of years ago and receive compensation but we did not sign up for healthcare. We are going to do this next week. We were worried we would be tied only to them and as you say we may like them enough that we decide to stay at tied to them eventually. We so much appreciate all of your information and hope that someone out there that does not know will see this and they will know just what to do. Wishing you all of the best.

  • When I was on Xtandi a little over a year ago I was offered by the specialty pharmacy a $20 monthly copay sponsored by the manufacturer, but that may have been a special offer because it had just been approved by FDA for use after Zytiga and before chemo.

  • Terrible thing this Xtandi situation,--eljlg3! I am not on it! Hope never to get there--but my Doc. says it could be in my future if my PSA turns around and starts doubling over a period of x-time. Matter of fact I get my next test results today---end of June I was 0.03, with aggressive Ductal Cribriform.

    My Doc. says that it is now approved with Medicare. Are you not on Medicare? He also said if there was some issue with Medicare, or you do not have Medicare, that he knows how to get it paid for 100%. I think my Doctor works thru the Drug Detailer for the drug company.

    Anyway the New York Times is doing an investigation expose' report on Xtandi. I was one of the people interviewed. Long Story! The Drug was developed by UCLA Medical, with a grant from the NIH. I was told the NIH did not have enough money to Grant, and got a lot more money out of the USA defense budget. Anyway the drug gets developed, and UCLA then sells the rights to a Japanese Company. And I understand they have the patent on it.

    So our tax paying money, to the Feds. financed Xtandi's development, only to be given to a foreign company, so they can rape people with advanced Prostate Cancer. This Drug, should be a designated orphan drug, since our tax paying money went to develop it--we should buy it at the cost of manufacturing, which is probably a few dollars for a month's supply. And those on Medicare, or with a good drug plan should pay zero. And this drug developed in the USA should be made here!!!!

    Nalakrats

  • I believe the patent is owned by Medivation, a US owned company based in SF. They have a marketing agreement with Astellas.

  • I was contacted by Canada Drugs Online, the New York Times Reporter, and the head of the Lobbyist group that advocates for Americans to buy Drugs from Canada--The American Company may have a license under the Patent. But they told the same process--UCLA Medical->NIH->Defense Dept.->UCLA Medical->Japanese Pharma->world-wide license companies.

    That is all I know. I got interviewed, my Oncologist got interviewed, my Urologist got interviewed and patients from Florida, California and other organizations/doctors. The Expose' has not been published yet--if there is to be one. They took an hour of my time/I am too small---so something is going on!

  • There are 3 underlying patents and around 25 subsequent ones. From reading the 10K, I believe the 3 key patents are still held by either UCLA or Medivation - I am trying to verify. Certainly some of the subsequent secondary patents are held by Astellas, a Japanese company, and others. Watch this space.

  • So this comes from Medivation's 2015 10-K, Pg 7 & 8

    files.shareholder.com/downl...

    The Astellas Collaboration Agreement

    We have a collaboration agreement with Astellas, or the Astellas Collaboration Agreement, pursuant to which we are collaborating to develop and commercialize XTANDI globally for all indications, dosages, and formulations of enzalutamide. We licensed the intellectual property rights covering XTANDI from the Regents of the University of California, or UCLA or Regents, pursuant to a license agreement described in the section below titled, “License Agreement

    with UCLA.” Under the Astellas Collaboration Agreement, Astellas paid us a non-refundable, upfront cash payment of $110.0 million in 2009.

    License Agreement with UCLA

    Under an August 2005 license agreement with UCLA, our subsidiary Medivation Prostate Therapeutics, Inc. holds an exclusive worldwide license under several UCLA patents and patent applications covering XTANDI and related compounds. Under the Astellas Collaboration Agreement, we granted Astellas a sublicense under the patent rights licensed to us by UCLA.

    RD again .....

    .......as I suspected, UCLA continues to own the patent. And if Astellas unilaterally cancels its agreement with Medivation, all rights return to Medivation - this is clearly stated in the 10-K.

    While 100% sympathetic to the unfair pricing, it is a misrepresentation on the part of the journalists to tell you or anyone else that the patents are owned overseas. This would not be the first time investigative journalists have inappropriately spun a situation to enhance their story.

    Perhaps you can reach to them to ensure they get their facts straight when they publish - it should not impact the substance of their story.

    Onward & upwards, rd.

  • Nice work--No I am not going to reach out to the Journalists or Lobbyists, that represent Canadian Companies that what to sell into the States. Got enough on my hands just fighting my disease. Only thing--it is a real shame about the costs when men's lives are at stake. I know too much about drug company research, marketing and sales points. And it disgusts me and has for many years long before being diagnosed with PCa. One example and I have many, as Drug companies were accounts of mine when I worked, before retirement: One popular drug, has a retail price of 80 dollars for 30 days. The co-pay if insured is about 20 dollars. The real cost inside the vial, is about 80 cents. I am a conservative capitalist--but something has to be done with drug companies. I am tired of their bull about how much they spend on research. They have a yearly budget regardless of what their researches are working on and it is fixed from year to year and not dependent on any particular project they are working on.

    Regards--again nice research

    Nalakrats

  • Wow Nalakrats! He is a Veteran but we are worried if we signed up for veteran health care that he would only be able to go to VA Health Care. We want him to be able to go wherever he wants to go if he chooses . Yes he is on Medicare but the stipulation is...you have to make under $60,000 to get approved for financial help and have paid out over $600 in prescriptions per family. We have paid almost 2000 in scripts. More in doctors. Thinking downsizing. Was not expecting these high copays with health-care.

  • My doctor--said he had ways of getting the Xtandi for free---I am not there yet and today had another PSA result that was lower than my June result of 0.03--they called it undetectable. There is an organization called the Prostate Institute of America--or the Prostate Cancer Institute of America. By calling, you get an Advocate, who is also a patient. I live in N.C. and he lives in Calif. We stay in touch by telephone and e-mail--he is on Xtandi--and he got it free and is not yet on Medicare--or just starting. I have 2 friends in Florida that got it free. Suggest you get in contact--with Organization, get an advocate, and have them do some work for you. It is all non profit--and the Advocates are volunteers, as their goal in life is to help men with PCa. They have lots of resources. If having any problem contacting--I could provide you with the 800 number, but you can find it online. Do not confuse it with the Prostate Cancer Research Institute. --it would not hurt to have this extra resource---they are hooked in world wide. Another resource--is go to WWW.USTOO.Org, and register for their Prostate cancer Hot Sheets--the latest new things going on and you can request all kinds of info and research, as well as clinical trials, Etc. We need all the help we can get.

    Regards,

    Nalakrats

  • I like that! Us too ;)

  • If you are under their income threshold Astellas-Medvation will provide it free. Contact them for patient assistance. Diplomat Specialty Pharmacy in Flint Mich. will help you with the process if you need assistance.

  • Hi Jackie,

    My insurance denied the Xtandi over costs. They did approve Zytiga. Zytiga is about a grand cheaper than Xtandi, when I did a web search. My co-pay is $35. Did you check out the Xtandi website? They have help for patients, I'd start there.

    Peace, Joe

  • Thanks Joe ;)

  • I found the manufacturer of Xtandi very helpful to me. Suggest you consider you call them as they have information that I believe will help you. I can't find their telephone number but if you google Xtandi, you will probably find it. Hope this helps.

    Dewayne

  • Thank you Dewayne :)

  • I am on medicare Part D which in Oklahoma is BC/BS Oklahoma. The first month on Xtandi my co-pay was $1,600., the second month $186 the third month and supposedly the rest of this calendar year was $470.(Round numbers) Next year, presumably, next year January will be $1,600., February $186., etc. It has to do with the concept of moving into and out of the "donut hole." Hope this is helpful.

  • So very helpful Davisjl! Thank you so very much. They did say he was in the donut hole.

    ;) Jackie

  • While they continue arguing below a quick side note. I was in a phase three drug study for men with non-met cancer. Fourteen months in, I had mets. Does that mean this new drug doesn't work? Obviously, it didn't work for me. Will the Zytiga work? Who knows. If it doesn't, will THEY approve Xtandi? It's like ring toss at the carnival.

    Joe

  • patandemma@jgmcbride

    A belated THANK YOU for your post 3 months ago on how to secure VA benefits

    The link you posted

    healthunlocked.com/api/redi...

    apparently CHANGED since your original post (led to dead end)

    Below is the CURRENT live link as of 10/02/16.

    va.gov/vaforms/form_detail....

    I am an honorably discharged vet and I did not even think about VA eligibility until I saw your post.

    Again many thanks.

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