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By lurkingforacure On 2013.01.10 12:30
Daisy mentioned her husband has the duodopa pump-does anyone else? If so, please share where you live and how you got it, and how much it costs each month.

I ask because here in the US, we have been waiting for years for the pump to be made available....talk about dragging our research feet, this has been available in Europe for over ten years! I know a ton of PWP who are waiting for this and we can't understand why it is not out yet. Please share if you have this, thanks, lfac

By cgold On 2013.01.11 02:51
My husband is involved with this clinical study. It is anticipated for the FDA to move toward approval sometime this year or next. Having been involved for the past two years, I have a better understanding of the approval process. I can relate the positve, the pump works very well and the carbo/levodopa is in a gel form held within a cartridge that connects daily to the pump. The clinical trial is no longer open as the study is in it's review. For those in the trial, they are in the maintanence level and receiving the meds as part of the study. Although approved in Europe, there are multiple other countries working within the trial and approval process also. For more information on the details of the study, I suggest searching through Google or other search engine for the full details. There is good information regarding the study.

By daisy On 2013.01.11 08:25
These are 2 videos detailing the Duodopa pump, which you may find helpful. You may have to copy and paste in your browser to view these.

http://www.youtube.com/watch?v=qnZEcIKzCOk

http://www.youtube.com/watch?v=_4xMnSzni7o

Please bear in mind that these are Promotional Videos for the company who developed the pump, so they Don't mention any negatives at all. The pump has been available in some European countries for over a decade.

By Knoosy On 2013.01.11 11:03
Administering the meds via a pump continuously and regulated makes so much sense. No more anxiety attacks due to the meds wearing off, a continuous even supply directly to the intestines. No more on/off periods. Not having to remember to take pills at certain times all day long. More independence and freedom. Why isn't this approved in the US?

By lurkingforacure On 2013.01.11 14:02
Indeed, why isn't it? Approved in Europe for over a decade but still in trials here....

Thanks for the responses:)

By daisy On 2013.01.11 15:18
I would imagine that the cost to the State is a major factor. The pump costs approx 10,000 dollers and each daily cassette about 125d (over 45,000 annually).
Also, the loss to drug companies will be enormous when it is introduced (and it absolutely will be). Unfortunately, not everyone will be deemed suitable. Typically, it is reserved for patients with advanced parkinsons or those for whom the medication route has proved unsuccessful.

And even then, some with cognitive deficiencies who may not be able to administer or maintain the pump, tubes, PEG or who have not a daily caregiver to do all this might also be excluded.

But for those who are suitable it IS a lifechanger. There are still OFFs but not as many or as long, the medication needs constant monitering because the disease is still progressing. It really addresses only motor problems. Food CAN still be a problem. There are associated problems with the PEG and tubes. I could go on and on..but that would sound ungrateful and I AM eternally grateful to have it for Dh.

By LOHENGR1N On 2013.01.11 15:41
Daisy, I'm glad you posted this last post. I'm afraid many here in the states are viewing the pump as a install plug in the med pack and go on your way with daily living not worrying for the day about having to take medicine kind of deal. More of a convenience item like say your one a day vitamin that releases our medicine throughout the day. If that is how some view it this last post will help dispel the idea. Thanks for the information. Take care, best of luck and hang in there.

By lurkingforacure On 2013.01.11 19:55
Thanks Daisy for your comments. I dont' see the pump as the holy grail for many reasons but thought if we could just get past the food interference issues, that would be so wonderful. I had not heard anyone say anything about food could still be an issue-can you tell us how, in what ways?

I had read conflicting reports that the pump would allow you to reduce your levodopa amount....then other reports said no, not really. Sounds like DBS in that way, good for reducing quantity of meds for some, but not others.

Does anyone know if you can get off of other PD drugs if you get the pump? Like the agonists?

The main worry I have is cost: aside from the surgery, I have read that in the US the gel inserts will cost about $120,000.00 per year, who can afford this? Apparently the NHS in the UK is very stingy with who they allow to get it....such as only those patients whose cost to take care of is less than what the pump and gel inserts would cost....this basically means the patient is in a nursing home and requiring lots of care (and the unspoken obvious: not a lot of time left)...very few people will qualify for this, if true. I have gone on some forums and read sad stories about PWP being denied this treatment solely because of cost...seems like the younger you are, the less likely you are to get this, as they don't want to be paying for your pump maintenance and inserts for very long, shame on them. Is this right?

By cgold On 2013.01.12 08:07
The pump is not for everyone as the same with DBS. The pump is focused on PWP whose meds are shorter in time until next dosage and for on/off periods that are erratic. For my husband, he was able to removed from all other Parkinson meds with the exception of carbo/levdopa in gel form within the cartridge. He is also dosage timed via the pump so that he receives a continious dosage thereby eliminating the troublesome dyskensia. The object of receiving the meds via a pump is that is bypasses the stomach and goes directly into the upper intestine resulting in no interference of food content in the stomach (i.e. protein). The pump is worn for 16 hours a day, not during nightly sleep. For some with the pump, they made need a sinemet pill upon bed to ensure that meds are within the body until the following morning. This is not the case with my husband as the meds via pump holds him overnight until he hooks up the following morning. When the pump is taken off at night, a syringe with 10cc of tap water is connected to the short external tube outside the body to push any remaining meds into the intestine. This is enough for most people to carry them overnight. My husband was diagnosed in his early 40's and has as PD for 19 years. He was a good candidate for this clinical trial. The result for him (us) is a renewed life, no longer having on/off periods, no longer figuring out social plans around his med schedule. If he is doing chores or activites that zap his energy, he simply presses a button on the pump for an extra dose which activates for him within 10 minutes. Onto the cost. In Europe and Canada, PWP receive this based up whether they are a good candidate for this process. This is the same in the case of DBS. Yes is expensive in other countries, but still not known for the US. But, this is expensive. I hope that I have added a few other points to the questions/comments on this pump system.

By daisy On 2013.01.12 14:28
Cgold, I am delighted that the pump is working well for your DH and after 19yrs, it must be a wonderful relief..with luck it will remain as good into a long future for you both. Like your DH, mine was diagnosed in his 40's but less than 6yrs ago. His only option was the pump or DBS. Now he has 2 pumps, set at different doses, ones for waking hours, one for sleeping hours, so his is, literally, 24hrs. He also takes Sinemet CR and medication for REM/restless legs before bedtime, which hardly ever carries him through. However, this will not be the case with everyone. As you say, everyone is different.

To address lurking's queries, I'm afraid I'm not familar with the NHS sytem in the UK. I would imagine that patients in a nursing home environment would be LESS suitable, simply because of the number of people that would have to be trained to use the pump. Most hospital staff and even doctors/surgeons have no knowledge of the pump. I think it is more suited to the patient and/or one caregiver situation.

In our experience, I must say that I know of people in their 90's and people in their 40's or younger who have the pump. I do think that each patient is assessed on a case by case basis (or at least I hope so). With any luck, my Dh is likely to cost the government a small fortune!

We still find that a high protein meal too early in the day affects DH and the pump may not work, even with extra boosts for the remainder of the day. However this may be just specific to him as he was always incredibly sensitive and we just avoid these meals, if possible. Hope this helps.

By lurkingforacure On 2013.01.12 18:16
Daisy, you must not be in the US then, since you have had the pump awhile-what was the process like in your country to get your husband on it? In your country, do they approve most people whose neuros recommend the pump, or do they have additional criteria over and above what the neuro analyzes? I just don't see,given the cost of this, that many governments will be providing this to their PD citizenry on a large basis....and from what I have read, the pump has a LOT more people who would be likely to benefit from it than DBS....very few who have the pump don't gain large improvements in their daily lives but a lot of people who get DBS don't, from what I have read.


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