Xtandi Copay: Does everyone have such a... - Advanced Prostate...

Advanced Prostate Cancer

20,940 members26,078 posts

Xtandi Copay

erjlg3 profile image
27 Replies

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

Written by
erjlg3 profile image
erjlg3
To view profiles and participate in discussions please or .
Read more about...
27 Replies
noirhole profile image
noirhole

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.

erjlg3 profile image
erjlg3 in reply to noirhole

Thanks so very much noirhole!

Dan59 profile image
Dan59

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

Dan

erjlg3 profile image
erjlg3 in reply to Dan59

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

Gecrellin profile image
Gecrellin

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.

jgmcbride profile image
jgmcbride

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.

erjlg3 profile image
erjlg3 in reply to jgmcbride

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

JohnSizer profile image
JohnSizer

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

erjlg3 profile image
erjlg3 in reply to

Thanks Joe ;)

jgmcbride profile image
jgmcbride

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.

DewayneH profile image
DewayneH

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

erjlg3 profile image
erjlg3 in reply to DewayneH

Thank you Dewayne :)

erjlg3 profile image
erjlg3

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.

jgmcbride profile image
jgmcbride in reply to erjlg3

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.

erjlg3 profile image
erjlg3 in reply to jgmcbride

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.

jgmcbride profile image
jgmcbride in reply to erjlg3

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.

adlerman profile image
adlerman in reply to jgmcbride

and disability pay is tax free.

erjlg3 profile image
erjlg3 in reply to jgmcbride

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.

erjlg3 profile image
erjlg3

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

erjlg3 profile image
erjlg3

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.

Davisjl profile image
Davisjl

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.

erjlg3 profile image
erjlg3 in reply to Davisjl

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

erjlg3 profile image
erjlg3

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

erjlg3 profile image
erjlg3

Thank you Ardeee ;)

patandemma profile image
patandemma

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.

You may also like...

Xtandi

Well got first two bottles today in the mail. I had PC at 50 with a GS of 9. Had radical and 7 week...

Abiraterone Zytiga Copay assistance programs HELP

are getting the copay assistance through Janssen which makes it almost free. We received notice...

Xtandi

going to start Xtandi, I had a good two year run on Zytiga, now I am going to start Xtandi in a few...

Erleada copay question

the copay would be $750/month. Does that make sense?

To Xtandi or not to Xtandi?

My Onc wants to move me up to Xtandi. I am balking because of the side effects. I already have...