Joe-
It just happenned.

My reply to them:

Dear Maria,
As a retired attorney I am sensitive to censorship of truthful free speech. I understand that you are a private invitation only concern and are within your rights to quash my writings. I am a very active member of the HD community and though I speak for nobody but myself I must tell you that your Caregiver Connection site does not resonate with many HD families. As I have said many times, the HD community is very knowledgeable about our disease and its repercussions. It is quite obvious that your facilitators have no previous HD experience. People are getting frustrated and not participating. I did try to give you honest and heartfelt thoughts and you are censoring me. It is true that Lundbeck has grossly overpriced TBZ and most people can not afford it. It is true that many people who once supported it have had bad experiences. I was drawn to your web site with the promise that it was a form of HD research. I soon realized that it was actually marketing research for xenazine. I gave you an honest assessment which you did not want to hear. Perhaps I was too honest and too knowledgeable. I understand that what I have to say could jeopardize your contract with Lundbeck and is not what you want to hear. I only tried to steer you in a direction that might actually help some HD families. There are great HD sites that exist only for the purpose of helping HD families that do not have to pay people to participate. I will continue to be an outspoken member of them. Best wishes to you and please try to do the right thing for your members.
Sincerely,
Howard
P.S. When I wrote a private e-mail with the same sentiments you e-mailed me with a totally different perspective!

hope you cashed out first ! I'll contine as long as the perks hold out.



edit....

your post, along with replies, are gone this morning

Joe



Edited 1 time(s). Last edit at 04/24/2013 07:01AM by JFB.

aw, I missed it. I'm with Joe. I can use the Amazon bucks.

We love you Howard.....outspoken and all.

Patty

My crime was to point out that xenazine was grossly overpriced and therefore prohibiting many folks from having access to it. Not particularly outspoken, simply the truth. Asking us to evaluate a slick marketing campaign is not my idea of HD research. Communispace will not help Lundbeck sell one extra xenazine pill. $7300 for a month's supply is absurd! Corporate greed!

I don't think they are any happier with me, Howard, if that's any consolation.

Thanks Marsha,
I just cannot morally participate in a concern whose sole purpose is to find a way to increase their profit from Huntington's Disease. In their introductory FAQ's Comunispace states that it is fine to be critical of a company if that is how we feel. They obviously did not mean that. They kept sending me e- mails asking for my phone number so that they could call me "because I broke their user agreement."
I did not wish to talk with them. Instead I contacted someone at Lundbeck corporate and told her how I felt. My writings were not rude, profane, or condescending in any matter. Mostly I shared my knowledge acquired from living with HD for 31 years. I did say that my daughter was successfully using xenazine but that many people couldn't use it because of it's high price. I pointed out that the drug was much cheaper if bought from Canada pre Lundbeck. Initially they were only going to scrub my "offending posts." Per my request I have been "decomissioned" and all my posts have been removed. Don't worry I can live without them and their participation bribes.
Howard

I also contacted someone at Lundbeck. Now someone wants to call me and discuss it too. I have had enough drama in the HD community to last a lifetime and I am not taking the call. I trusted them and posted their request here and that's the last time I will ever do that.

If Howard says he didn't violate the user agreement, then that's all I have to hear, he didn't. You have credibility here, Howard.



Edited 1 time(s). Last edit at 04/27/2013 09:00AM by Marsha.

Xenazine costly? Over priced, $28 and change per pill of a drug that has been around for decades? Nah. A socially responsible company, like Lundbeck, would never take advantage of small population like the PhD community, right? My MS. America has been on xenazine, 25mg 2xday since April 2009. Not saying the drug is not helping, but that adds up to well over a quarter of a million dollars from government coffers and our pocket that goes to Lundbeck's bottom line.

Wonder if there is any way to initiate/energize an official looksee into Lundbeck and its pricing of the drug? But then who would support HDSA and all it's grand schemes?

Fred Lothrop

Out of curiosity I looked up the price again from Canadian pharmacies. The price for 100 25 mg pills averaged about $100.00 or $1.00 per pill. My daughter also takes 2 25mg. pills daily and last month the cost was $7300 or $121 per pill. I'm not sure why hers is higher than Fred's wife. Probably because she has both medicare and medicaid and Lundbeck can hit the taxpayers twice!

Good question Howard.

Lundbeck, got your ears on?

put new batteries in the calculator - monthly is usually 5800/60=96 and change per 25mg pill, closer to Howard's calculations. found an old article discussing tetrabenazine - seems it has been used for treatment of chorea in several diseases for years throughout the world for some time. FDA put it on fast approval fast track in 2004, with approval for use in HD in 2008 (I think) in the US.


[usatoday30.usatoday.com]


To rephrase the question.. If this is an old drug, in use for decades, why is still so eff'ing expensive here in the US?

Tetrabenazine has been around for more than thirty years and has been available in Europe and Canada. Some people in the U.S. were able to get the drug through an open label trial for several years. This generated interest in the drug here. Prestwick Pharmaceuticals decided to try for approval here in the U.S., in part because of HD advocates who wanted this drug available as an option. The FDA approved a Phase III trial for the drug. Fast tracking the drug means that they will respond to an application for approval within six months. The FDA had some concerns that they wanted to address. They also held hearings that HD families attended. The drug was finally approved. It costs more than $10 million for a Phase III trial for HD, at least that's the estimate I've been given. They are expensive. Prestwick as I understand it was overextended after costs exceeded what they expected to get the approval and sold the rights to the drug to Lundbeck. Lundbeck contends that the price reflects what they paid Prestwick and Prestwick's price reflects the costs of getting approval. The HD community is small and tetrabenazine is not going to be used by everyone. Some people have little to no chorea. Also, we know from our experience that people react differently to drugs. No one drug will help everyone with a particular symptom and no drug will be effective indefinitely for the individuals it helps. I think you need to consider that just maybe Lundbeck is not gouging the HD community but just trying to get their costs back before the drug becomes generic.

Here is an article from Forbes I think people should read: [www.forbes.com] . It costs an average of $4 billion to develop a new drug and bring it to market. If you add in the costs of failures in the company with the approved drug, drugs in the pipeline that looked promising in animal models but failed to help people, the cost is $12 billion. This is why drug coverage is very important in our community, because HD drugs are going to cost a LOT of money when treatments are available.

My mother had multiple myeloma. Her medication cost $100 per pill. Google the costs of cancer treatments. Treatments for certain cancers are astounding high.

Something has to be done differently in this country.

Marsha,

You got my vote to be Commissioner of the Food Drug Administration. pHDs deserve a strong voice as in a good PHD to find a better way of doing something, what ever that is.

We actually have a great voice already! Judy Roberson, an RN and a long time HD activist from California is our HD advocate to the FDA. She was part of the group that successfully advocated for CIRM stem cell funding for HD.

Marsha, we are very lucky to have you here at this forum. I don't post here often, but it doesn't take me very long in just looking over the latest threads to see you weighing in, in a most helpful and encouraging way. We will never give up.

I was curious what percent of PHD's you are seeing who are taking tetrabenazine with success? Also of all the people who have "tried" the drug, how many dropped out due to side effects?

My wife tried it (from Canada) going back about five years ago. We didn't last a week before she was overwhelmed by the depression. She told me just recently that "the stuff made her want to kill" herself. She never stated it like that back then, but I knew it was not for her.

Thanks again for all your help,
Ty

Has the Caregiver Community closed?

I got the email for the appreciation, but unable to log in and retrieve it

JFB,
Same here, I think they may email the codes next week. It was pretty confusing, I could not log in either.

I got a second email with the code last night.

what is interesting about this thread is the silence from Lundbeck, particularly in light of Howard's 26 April post. Maybe they don't just care about the community's percept.