In my opinion this is nothing short of criminal.
 

Having just watched a few videos on youtube of patients in the Netherlands who are on the duodopa pump I am convinced that the FDA is violating my First Amendment constitutional rights to life, liberty and the pursuit of happiness. They are preventing the approval of a medication which is KNOWN and PROVEN to greatly improve a patient's quality of life, thus dooming me to a life of relying on caregivers and the ever lessening and costly social support system. I can no longer provide for my family, no longer lead a productive/contributing life in society instead I am relegated to a wheelchair, needing assistance with even the most basic of tasks. I am thoroughly convinced this is nothing short of criminal. I assure you I am not psychotic, just ****** after watching these videos and having fallen three times yesterday and having to the ER twice in the last month for extreme rigidity, then for a bowel obstruction as a result of the levodopa.

Why can't the FDA "encourage" some company to get this treatment going? I will tell you why- good ole American capitalism. These other countries who have duodopa all have one thing in common-socialized medicine!

I welcome anyone to challenge these remarks, where am I missing something?

Agreed, Jim. The only way we'll see change is to start being a squeaky wheel. Yet I cannot get any PWP on board. I think we need an activist group much like ActUp for AIDS. However, PD advocates balk that the in your face protest approach is vulgar and others think we need the blessing of a pd org like NPF.

I have tried a few times to take action...through forming activist group but no takers.

I am some days playing with idea of starting a patient-centric non-profit to address all the issues we have, but I cannot take that on all by myself.

Laura

PS MJFF and pump- think of public relations fall out if he were to get a treatment not available to US peeps. of course it may be a good kick in the butt for the FDA.

Let's do it. I don't have PD but my dad does. I am very very much interested in some sort of group. I know I will produce change/action

anything
 

i will help with anything to change the status quo. as i sit here trying to deal with a really painful dystonia in my left arm, i am tired of it all. i can't understand the lack of options available to us. i love mjf but i am not able to talk to the heads of drug companies, or appear on talk shows. i don't think i am doing "great" and i know many of you are suffering. i am happy for him but the public believes what they hear and i wish we could tell them what this disease is doing to us and our families.if they knew about the duodopa pump not being available to us maybe they would help us. i emailed senator nelson here in florida. please let me know!

Floridagal..
 

I too wrote Senator Bill Nelson's office, the White House, Mitt Romney and a few others that I can't remember. At least I felt like I was doing something. By the way I have postponed my trip to Gainesville, I feel like my DBS needs to be adjusted and not yet ready to undergo a 2nd surgery. I don't think the chances of coming out of it considerably better than what I have are worth the risks, I am not that bad, when you think of it I was told my voltage is like it is barely turned on so I have a lot of room to play with. That in addition to the many challenges of travel, etc are not workable right now.
Throw in the fact that my mom, who is my biggest helper, has just undergone surgery-she fell, had a CT and they found a brain tumor-it ended up being benign meningioma but geeeez what do you have to do to get a break! Ya know.

I hear you Jim
 

I am sorry to hear about your mom's fall but glad the tumor turned out benign. I hope your adjustment gets you feeling better. take care fellow PD Warrior!

I agree too, Laura, but I don't think the blessing of any other organization except for big Pharma would be worthy of the FDA. By a blessing I mean a big handful of cash in the right pockets.

Why is Sinemet nearly $600 per month for 360 pills? It's a 100% profit that's why. The bloody stuff has been around nearly 40 years, therefore there is no more research money in there to right off. It's 100% cash in their pocket at our expense. And now they're cheating us to boot!

John

I have never been much of a believer in conspiracy theories but I think you may sadly be right.

I need to finish some work with the PCC book project but will start looking into how we can start our own patient led and driven group. I think preliminary step is to research more vocal patient groups in MS and Thyroid disease. I believe one patient of MS actually started a research foundation solely dedicated to exploring what he believes is crucial to finding a cure and he now has scientific researchers on board; while thyroid patients have their own org and actually publish their own journal!

If anyone wants to get a head start in looking for more info on patient led groups, start up costs, etc. please PM me and I will find a common space for us to gather sources together online.

Thanks!

Laura

PS Another really influential person we may want to appeal to is Marcia Angell who is not shy about criticizing the disease industry and the FDA. She might not be able to make the FDA act, but she can certainly publicize our plight.

Campaign to speed approvals of new therapies
 

I am sympathetic with the frustration expressed in this thread, but I do not recommend that picketing is the best approach to solve the problems. I dont think we have enough able bodied people to mount a significant enough protest to get their attention. I for one find it difficult to type this, much less walk a picket line. A more feasible approach might be a letter writing campaign to the Commissioner and other key officials to ask for endorsement of our agenda, and ask for a meeting to decide what needs to be done.
I am working on a policy agenda to speed the pipeline that will share when it is ready if there is any interest.
Perry

What's Going On With Duodopa?
 

I've been off the forum for a long time so forgive me for not being on top of some things happening in the world of PD. I had successful DBS surgery a year and a half ago, but before I decided on DBS, my neurologist did give me the option of the Duodopa pump. Has it been denied by the FDA since then or is it still only available - in the U.S. - as part of a clinical trial?