Nuplazid psychosis medicine

[NanCyclist]

The makers of Nuplazid (primavanserin), the new medicine for Parkinson's Disease Psychosis, have asked me to discuss ways to increase awareness of Parkinson’s disease psychosis (PDP) and identify what resources are needed within the community to provide more education and support. A focus group will meet next Wed. to discuss this. Please let me know what you would like me to tell them.

[Macelott2]

I could tell you of my husbands experience with this problem,but not sure if that would be what you require under

(Increase awareness)

[NanCyclist in reply to Macelott2]

I would appreciate hearing your/his story to help me with my understanding so I can distill the meaning for the company. Many thanks.

[Macelott2 in reply to NanCyclist]

Mick was dx in 1984 aged 36 now 68.

Coped well for many years. Had a very traumatic experience in 2010.. About a year after that he started having hallucinations. Was in hospital for a couple of weeks in 2012. Was taken off ropinrole amantadin and selegine and just left with sinemet,nothing given to replace these. Due to this he lost a lot of mobility. Dx with Parkinson's dementia and referred to psychiatric drs. Been on lots of different antipsychotic drugs which have not got rid of hallucinations entirely. Are better but still sees people in garden. He has always said he felt abandoned and left to get on with it. He has never been offered any scans in all this time. I asked sometime ago if he could have a dat scan this was refused. There has always been a doubt in my mind of dx.

[park_bear in reply to Macelott2]

That seems criminal to take him off all those meds he would clearly need at his stage. Fire those MDs and find someone else to take better care of him. Hallucinations are not unusual for late stage PD. That and the fact those meds were helping him would seem to indicate he does have PD.

A DAT scan is not an entirely benign procedure since it does entail introducing a radioactive substance into the brain.

[NanCyclist in reply to Macelott2]

Macelott2, I just got off the phone with ~~~~~~~~~~~~~~~~~~~

Julie Reynolds

Associate Director, Corporate Communications

ACADIA Pharmaceuticals Inc.

3611 Valley Centre Drive

San Diego, CA 92130

o: 858-261-2892

c: 858-337-2185

[e-mail]

She is eager to help you and your husband but she said that they are in the process of developing their relationship with countries other than the US. That said, she will find out where they are in the process and do her best to help you. You can contact her at the email above. I think it's interesting to note that she has an uncle with PDPsychosis and is very aware of the effect this diagnosis has on the patient and all around them. When you contact Julie, be sure to reference the connection with me.

Also, please let me know what happens.

Nan Little

[djmoore60]

My husband was hospitalized last Sunday and was delusional. They started him on Nuplazid 3 days ago and we haven't noticed a lot so far but I believe it still ill ake some time before we notice a change. My insurance company has denied payments for this drug. If it does work, I cannot afford the cost of this drug, it is going to cost me $2,000.00 a month, could you ask them if they have a way for me to afford this drug for my husband.

[NanCyclist in reply to djmoore60]

That was the first issue on my list. You have just made it into a real life story. Many thanks.

[NanCyclist in reply to djmoore60]

Your story was most helpful. I repeatedly told the doctor that it is cruel to put a carrot out in front of the people's noses telling them that there is a solution but unfortunately they cannot afford it. Most people cannot afford two thousand dollars a month. I made it clear that people need to be able to afford their medicine. I also emphasize that the doctors need to prescribe other things before medication. As you all know, I am a strong advocate of exercise and I think that that should be the first line of defense against any problems that we have. It is good that there is the medicine but the doctor should not be so quick to prescribe it.they need to take into account the interactions of all the medicines we take in order that we are most safe. Obviously, I don't know if anything will come of this, but I tried. I do appreciate you sharing your example.

[NanCyclist]

A representative from Acadia, maker of Nuplazid is calling me next Thursday to see if they can do anything to help, particularly with costs. Please communicate your concerns. Who knows, but it feels like a door is swinging open a bit.

[NanCyclist in reply to NanCyclist]

Hi Nan,

Thanks again for your time today. I really enjoyed getting to know you better.

After our conversation, I went straight to my NUPLAZIDconnect expert and got a better understanding of what we can do for your contact.

He told me that some insurers require a score within a certain range on cognitive exams in order to reimburse. Sounds like the PwP fell outside that range, which is why BC/BS denied it.

The physician can appeal the denial and NUPLAZIDconnect has templates that the physician can use to make it easier. If all else fails, the patient would likely qualify for the Patient Access Program I mentioned which is designed for folks who don’t have insurance or whose insurance just won’t cover it.

I can have a Patient Access Coordinator call the caregiver and help with all of this, if the caregiver is willing. Also, we would want to contact the physician to help him/her with submitting the appeal (as well as educating that it can take 4 – 6 weeks to see treatment effect).

As I see it, the next steps would be:

1) You to forward the caregiver’s contact information to me if she is willing

2) I will have someone from NUPLAZIDconnect reach out to her

3) The sales rep and/or NUPLAZIDconnect will contact the physician to educate on the appeals process (and time to treatment effect)

Should you hear of other PwP or caregivers that need help with paying for NUPLAZID, feel free to direct them to NUPLAZIDconnect at 1-844-737-2223. The folks there will walk them through everything they need to know. Or you can send them to me and I’ll be glad to help.

Thanks again!

Julie

~~~~~~~~~~~~~~~~~~~

Julie Reynolds

Associate Director, Corporate Communications

ACADIA Pharmaceuticals Inc.

3611 Valley Centre Drive

San Diego, CA 92130

o: 858-261-2892

c: 858-337-2185

[e-mail]

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[Josephsimon]

My husband Louis had a very terrible dream/delusion/hallucination last July. I took him to neurologist immediately and was he put on NUPLAZID. He has not had a bad event since. He takes two tabs at about 4 pm!

[rhyspeace12]

My husband had horrible psychosis, probably because he was panicking and taking too much Sinemet. We looked into Nuplazid, but it is really expensive $2700 a month! He was put on Seraqel and it has worked wonders ($14 a month on our insurance plan.) He was so psychotic he fell thinking he was fighting off intruders and got a wound in his leg that still hasn't healed and that was 2 months ago. He imagined the north Koreans were bombing us. He didn't sleep for 4 days as he wandered around. He gets upset now, he is still fragile to stress, but he doesn't react in a psychotic way. I am so relieved. He started out at 12.5 mgs twice a day and now is up to 25mgs. twice a day. He is elderly and not supposed to go over 25 mgs twice day.