Wrapping Up Clinical Trial/Cost to Continue Meds

Hello, everybody, it's been a while since I've posted. I've been lurking around and keeping up with the goings on, but haven't really had anything to add. Last October marks 5 years since Randy started on the EMBARK study. Our trial coordinator informed us last week that the trial is organizing it's findings and will most likely end for Randy this year. It's a double-blinded study, so he's either on Lupron and Enzalutamide or Lupron and a placebo. We've made it a total of 7 years with no measurable progression of his Gleason 9 disease. When the trial ends, we should find out which arm of the study he has been in all this time. We're a little nervous about what happens next. Since whatever protocol he's on now has been working so well, we don't want it to stop. If Enzalutamide is part of his protocol, we're not sure whether the cost will be prohibitive. It's been a couple of years since I've checked the out of pocket costs and we're now going through an insurance change. Randy's only 63, so Medicare is still in the distance. Both of our incomes usually puts us outside of any assistance from drug companies, yet it's not enough to cover the out of pocket cost of this drug unless it's come down a lot in the last couple of years. We may be borrowing trouble. Maybe it's Lupron alone that is responsible for his lack of progression. Who knows? But, I do want to try to plan ahead, just in case. Do any of you knowledgeable folks have any ideas?

Thanks, Donna

While there is no guarantee, there is a possibility that the sponsor offers those who were still in the trial and in the ADT + Enzalutamide arm (or perhaps both arms) to continue their medications free of charge when the trial ends. It is also in the sponsor's interest to see how long those on Enzalutamide remain progession-free.

You could ask your research nurse or your study doctor if they have any information about this.

Djin

Mumbo said...
https://www.xtandi.com/financial-support

If and when the time comes, work the system as hard as you can and don’t give up. There are many ways that help can be provided and you may have some ways through the study sponsors as Djin noted.

^^^^ I’m on Humira (for another condition). Co pay was $3,500. I called the company directly as Mumbo shows. They do not know my income. They never asked my income. They payed the copay and I paid nothing.

These companies have a financial interest in paying the co-pays given what the insurance companies are paying them.

Donna, as I have no experience in this area. I did find an interesting read. I typed in my browser, what happens after the clinical trial is over. I read several articles. The one from findmecure.com what happens after the trial is over, mentioned that some information might be found in your beginning declaration paper work. Also, they state that the Declaration of Helsinki on this subject has some bearing. Sorry, I don’t know how to post this exact page. Overall, it seems there is some disconnect on what to do. Wishing you the best outcome regardless of what you find.
Jack