Hey folks,

Our Xenazine bill for 60 25mg pills, 30 day supply, just jumped to 6,166.88$, 88 cents???, or 102.78133$ and change, per pill. They must have added another layer/cost center in getting the med from manufacturer to PhD, I counted six different entities on the paper work/shipping docs.

I have noticed that the price changes a lot. I don't always get a statement from the medicare drug insurer but when I do, I have seen as high as $7300 +/- per month to as low as $5600 +/- per month. At these prices it should not take a lot of patients for Lundeck to recoup their $10M investment. If the average patient took xenazine for only 3 years (and I realize that Lunbeck does not receive all the money and does have ongoing operating expenses, but for the sake of simplicity I will disregard them) Lundbeck would receive roughly $200K per patient. At this pricepoint they would recoup their investment with only 50 HD patients. I cannot believe that they must charge what they do.

Interesting, I notice the price increase came with a new Rx from Linda's primary care provider, not John Hopkins as was the case. Nah, Lundbeck would not let their supplier do that, would they?

Interesting, I notice the price increase came with a new Rx from Linda's primary care provider, not John Hopkins as was the case. Nah, Lundbeck would not let their supplier do that, would they?

Just took part in the latest fiasco, wrong word but you know what I mean, concerning Lundbeck and one of it's specialty pharmacies about the subject of the day - Xenazine.

Ms. America has been using Xenazine since Apr 09 with good results. The Baltimore HD Research Center at John Hopkins has been prescribing the med, 30 days per Rx w/3 refills. Due to holidays, schedules and what have you, there has been a couple of bumps that resulted in a gap in getting refills approved and Rx'ed by JH and approved by pharmacy resulting in no meds.

The Baltimore Center, working with the Xenazine Information Center (XIC), found the Rx can be written for a year, 30 days issue due to the HIGH COST and insurance concerns, in our case. With remainders at the Baltimore HD Center and on my calendar the pharmacy will be bugged every 30 days to initiate activity necessary to get the meds to Ms. America with no breaks.

People on the other end of the 888 number who read off a script and a computer menu were unaware that Lundbeck is okay with a one year Rx. The Baltimore HD Center did not realize and the ultimate user sure did not know. Without casting obvious stones, lesson for all using Xenazine - check with your pharmacy, the XIC and get your MD to write the Rx for a year.

If Lundbeck has it's ears on, suggest policy clarification and guidelines to Xenazine Rx'ing MDs and specialty pharmacies. Sure will make life a lot easier down here in the trenches.

Fred Lothrop

Fred-
My daughter has always been on a one year prescription written by her neurologist at Mass General. The doctor just has to reauthorize it every 12 months. Accredo Pharmacy calls me on the 8'th of each month to set up delivery. She has been on it since July 2009 and we've only had a couple of minor glitches. We're fortunate that we have an extra 1 1/2 month's supply beacause the nursing home was so bad at giving out meds. When she left they gave me the extra meds because I brought them over there each month. I guess this is insurance for pills that roll on the floor and disappear or any future problems with Accredo.

Great.

There is always the ten percent that don't get the word. It should work more better now everyone is on the same sheet of music.

Have a good one