[RLSmi]

Our medical industry is obscenely greedy! Putting the drug cartels in the public trading process only expands the growing chasm between access by the ordinary people of even "scientifically advanced" countries and existing medical scientific advances.
The governmental bodies, FDA, especially, are totally in the thrall of this immoral cesspool of greed.

The medical profession has allowed itself to be sucked into the same addictive game. Exceptions are there, but are hard to find.

The straw that finally brought on my rant is the realization that Duodopa, possibly the most beneficial treatment for persons in advanced PD stages, is so expensive that only the very wealthy will have access to it.

This appears to be primarily because the technology was developed to require the gel-containing cassettes, which cost more than $100 each, to be replaced daily.

I'm mad as he**!!

Robert

[paula_w]

Originally Posted by RLSmi

Our medical industry is obscenely greedy! Putting the drug cartels in the public trading process only expands the growing chasm between access by the ordinary people of even "scientifically advanced" countries and existing medical scientific advances.
The governmental bodies, FDA, especially, are totally in the thrall of this immoral cesspool of greed.

The medical profession has allowed itself to be sucked into the same addictive game. Exceptions are there, but are hard to find.

The straw that finally brought on my rant is the realization that Duodopa, possibly the most beneficial treatment for persons in advanced PD stages, is so expensive that only the very wealthy will have access to it.

This appears to be primarily because the technology was developed to require the gel-containing cassettes, which cost more than $100 each, to be replaced daily.

I'm mad as he**!!

Robert

AMEN! we are too nice, we need to start suing, not that we'd win. retaliation would be even higher prices. we are powerless.

[lurkingforacure]

Originally Posted by paula_w

AMEN! we are too nice, we need to start suing, not that we'd win. retaliation would be even higher prices. we are powerless.

Not so fast....remember that pharma needs sick people in order to even exist! The more we learn about our bodies' abilities to self-heal, a burgeoning industry, the less people need pharma and the less power they will have.

It's too bad that things like this happen, as medicine has made some incredible advances and there are things out there that really do help a lot of people with a lot of problems. I personally don't think duodopa is one of them. I used to, but not anymore. It's just another form of a drug that already does not help an awful lot of people, and most folks on levodopa have nearly intolerable side effects. Plus, at our last appt. we were told that one duodopa trial participant had "bottomed out"...not good, whatever that might mean (I am pretty sure it was not fatal, but still). Another neuro told us he was very concerned that the PWP will be in control of the duodopa button dispensing the duodopa drug, for obvious reasons.

How many really think a pill or me-too drug is going to work for most of PWP? I don't. If it were, I think we would already have seen signs of that. Instead, I think we will see things like the ones already on the horizon, like vaccines. We need to do our research, be proactive in our own health (tai chi, exercise, low stress, etc.), and support as much as possible things that really might make a difference. When PD is cured, there will be no reason for companies like this to even exist. Remember, duodopa is not a cure, it does not even stop or slow progression from what I have read.

[pegleg]

Robert -
I, too, am appalled! You said of the not-yet-FDA-approved Duodopa (a pump that utilizes dopamine replacement in gel form) that, "the technology was developed to require the gel-containing cassettes, which cost more than $100 each, to be replaced daily." The key words here are "require" and "replaced daily." Let's do the simple math - "100 a day" for 30 days (I hope it doesn't take more than one cassette a day!), which equates to $3,000 per month!!! That's highway robbery!

This is ludicrous! No wonder there hasn't been any NEW standard of treatment in over 40 years! I can't see health reform or even private insurance agreeing to finance a medication regime at that expense!!

Point me in the right direction and I'll help you take a swing at these crooks. (Do you think we can make our own cassettes?) I'm totally in agreement with you on this one, Robert.
Thanks for sharing.
Peg

[lurkingforacure]

Why couldnt' one just smush a sinemet in some water and put that in the pump dispenser instead of the magic $100 gel cassettes? Or blend it in some coconut oil or some other carrier? Showing total ignorance here, but necessity is the mother of invention.

[pegleg]

I have only briefly viewed this new invention, but I believe the cassette is where you place the gel to have it dispensed from the pump. The pump is worn with a holster type strap> (That might pose a problem when you wear a bikini (haha!)

Here is some online info on Duodopa.
http://www.mims.com.au/emims/errata/...01/duodopa.pdf
peg

[lindylanka]

Is this why it is is taking so long to go through the approval process in the US? Did they change the delivery system? And make it more expensive?

In Europe it has been available for quite some time. Is the european delivery system cheaper? Is there anyone who can give comparative costs on Duodopa in Europe, and in the US?

Sorry so many questions, but it would be good to know what the differences are, and the differentials.

Nothing like need to bring out greed :-(

Lindy

[Conductor71]

Robert,

Believe me, I understand your outrage. This whole sham of undergoing further trials in the States is ludicrous...it is totally unnecessary, and it looks like they will try and make PWP or their insurers compensate for the loss incurred by the FDA's demands.

Do you have on good authority that this will be out of the reach for most of us cost wise? I am just rather surprised that Solvay/Abbott would bother expanding their market here given the absurd demands of the FDA. It is crazy expensive to run trials, market, etc. How in the world will they recoup their capital outlay if only 500 people can afford the treatment. It makes much more sense to compete as a less invasive alternative to DBS. They have research backing them as they have known for sometime that continuous dopaminergic stimulation is beneficial and far better than peaks and troughs of oral Sinemet or the agonist side effects. It seems to me they would profit from lowering costs and having many more people on it. That is my econ 102 take on it. IMHO it just doesn't make any sense to make it so cost prohibitive. If they do price set it so high then they will have a lot of people complaining.

BTW, an IV treatment developed top treat Gaucher disease when approved by the FDA cost $300,000 a year?!?!! That is insane. It wasn't long before they had some competition and prices became reasonable.

Just some other thoughts on it...

Laura

[stevem53]

I go through about $500.00 worth of pd meds, Salevo, Amantadine, meds for sleep deravation because of pd, anti-depressant meds because of pd, anti-anxiety meds because of pd, Vitamin D suppliments because of a Vitamin D deficiency because of pd, fish oil and calcium suppliments because of a Vitamin D deficiency, because of pd, and I figure I have stage 2 pd

I have talked other PWP who pay $1000 - $1500 per month

Not to be cynical or anything but, not for nothing.... multiply that by the number of PWP in the USA..And because pd is a long term illness, we are pharma's best dream come true

Here is a question that has me puzzled??..They claim they dont know why or how we get pd, what causes pd, yet they can induce pd in lab animals..I might be wrong, but this doesnt make any sense to ne