When the coronavirus happened, it seemed as if overnight the FDA was approving clinical trials for treatments for the virus. Why can’t it work that fast for Parkinson’s disease?
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Overnight the FDA was approving clinical ... - Cure Parkinson's
Overnight the FDA was approving clinical trials for treatments for the Corona virus. Why can’t it work on Parkinson's at the same pace
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Farooqji
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•
Has it worked for the Virus ? I know of no vaccine.
Because Parkinson's is not killing a thousand people a day, which, apparently, is going to continue for a few more months. 300,000 dead by December 1. I hate to say it, but I don't see the federal government ever spending a lot of money or feeling any urgency to address Parkinson's. We're on our own.
I appreciate the frustration but the fda is not the one developing the treatment. It's looking to fast track approval. And it does that for other conditions like cancer and PD too. The pharma's that are doing the fast paced vaccine development are able to do so because it's relatively simple known territory. They know what a virus is and they know how to make various vaccines.
Parkinson's is trickier
Pressure from activists in the gay community persuaded the FDA to fast-track trials and treatments for HIV. Could Parkinson's patients achieve the same thing?
You have to have something to fast track
I think not. Because there's not enough of us.
• in reply toMBAnderson
Is FDA approval timeframe actually a significant bottleneck for PD treatments? I doubt it.
Not suggesting you've said this, but whilst I'm here, the idea that there's no money (and consequently no interest) in a PD cure is utter bollocks. If there's a million new people dx a year (very rough guess), thats a million people a year that are going to be climbing over each other to get access to the first proven disease modifying treatment. They know theres a market willing to pay because people pay tens of thousands of dollars for DBS and FUS (plus all the $ that the supplement industry extracts from PWP based on very little hard data). The other clue is that companies keep piling money into it (yes, some of the majors have pulled back from Neuro but there is still massive investment in it).
pdpatient• in reply to
ChrisWF, you are so right. From a matter of perception, Parkinson's is viewed as a "Rich Man's" disease. Thanks to the aggressive advocacy of patients like Michael J Fox, Mohammed Ali, Davis Phinney and others, we benefit from the perception. We also benefit from their fund raising efforts.
We are a tiny portion of the population and yet we have so many drugs coming into the market which is unprecedented. MBAnderson correctly points out that we are a very small number. However, as both a diabetic and a Parkinson's patient, I can attest to the fact that as of today, both conditions have a reasonably comparable rate of new drugs, available drugs and drugs in the pipeline.
There's a massive population of diabetic and pre- diabetic patients who are a literal goldmine all over the world and are a significant portion of the total world population. Parking patients are lucky to be big pharma put both in the same league. There's however a secret and not well advertised reason for it. I have the reason at the end up my post.
Unfortunately, for both diseases, the only medicines that are reasonably reliable, trusted, well known and reasonably safe overall are the ones developed decades ago. For diabetes, it's insulin. For Parkinson's, it's Levodopa.
BTW, there's a prediction of a "Parkinson's Pandemic" according to some researchers. I have provided several links. They are all various articles and opinions based on the same research and thought leadership.
ncbi.nlm.nih.gov/pmc/articl...
parkinsonsnewstoday.com/202...
parkinsonsblog.stanford.edu...
michaeljfox.org/news/ask-md...
jamanetwork.com/journals/ja...
sciencealert.com/research-w...
urmc.rochester.edu/news/sto...
Thank you for providing the links! I had forgotten where I had read that info!
You are most welcome, ddmagee😇😇 BTW, how is your wife doing these days and how are you?
Your strong will and support for each other amidst such challenges is among the most moving and memorable stories on the forum that keep me going!!
It’s so very kind of you to ask about me, and my wife! Thank you for the compliment! That makes my day! My wife has surpassed her cardiologist’s prediction, of her longevity! That’s a great milestone! It’s been such a struggle for my wife, what with shortness of breath, and having insulin-dependent diabetes! I’m hangin’ in there, so to speak! We had a wonderful 50th Anniversary, in June! Our daughter gave us a little party, in our front yard, with just family and a couple good friends. Of course, we all wore masks, and applied social distancing, due to the COVID-19! The support I get, from you, and others, in this forum, keep me going too! Hope all is ok with you, too!
Congratulations.
We're here for each other, aren't we, ddmagee? We have all been through this life journey and pretty much have moved through the emotional trauma of a diagnosis to accepting our individual fates. We get to see how it could have been even worse. The bottom line is that we should be happy to be alive.
Thank you for being such a great example for people like me who need the strength to carry on with a long life ahead of us.
Congratulations on your most special moment in time and again for sharing your stories.
You might want to go to Drugs.com and look up the side effects of her drugs. We helped a man two years ago by printing up all his 25 medications and their associated side effects. He was short of breath. He then made the decision to stop the medication that caused the shortness of breath, actually, I think there were two, and he was no longer short of breath.
Good articles. They make a strong case.
Thanks, MBAnderson. Good morning and happy Monday.
To you too. It's a heavy overcast, gloomy, cold and raining here in St. Paul, but we'll make the most of it.
MBAnderson• in reply to
I don't understand entirely. As you acknowledge, I did not say there is no money, but then refute the proposition as utter bullocks.
I said I don't see the federal government spending a lot of money in Parkinson's and I don't.
• in reply toMBAnderson
My second paragraph was not in response to anything you said.
MBAnderson• in reply to
Okay, thank you for the clarification.
Oh there is enough of us but by the time you get half of us involved ,the other half has gone for a nap. We cant do what we used to, even for something this important. too stressful. That is why most PD support groups are organized and chaired by care givers.
Quite right. "Fight back, Silence = Death" and so on. Nevertheless, no HIV vaccine and it's been 30 years running.
Follow the money. Maybe the most money is in not finding a cure: PD, ADPKD, any CKD, etc. Ask your friendly Federal Delay Agency. Or maybe it is just hubris, or maybe both. I've wondered for years why it takes years of testing on most medications when a few months is enough and a close monitoring for years and I get to live. You too?
Recent studies, on the number of people with Parkinson’s, around the world, have shown a trend upward, meaning that someday, it could, predictably, reach near pandemic, levels! If that is so, then maybe researchers would pay more attention to find a way to treat/cure/stop the spread of Parkinson’s! I would provide a link, but, at the time, I don’t remember from whilst I read those statistics!
The answer is simple: Coronavirus can kill us, whereas Pd does not.
The medical world would prefer to treat any condition for many years, rather than find a cure, if the condition does not kill, us.
Well said, JohnPepper.
I try to steer clear of any discussions of federal government. I don't really understand how the USA works - and for an outsider the USA and its government makes Alice in Wonderland seem every day normal
The original thread title referenced the FDA which is probably what confused me
"Overnight the FDA was approving clinical trials for treatments for the Corona virus"
How much is the federal government spending on covid vaccine or treatment research? I doubt the federal government (or any other government) will spend much on Parkinsons research - but at 10 million sufferers worldwide it's developing into an interesting area for pharma research
pd patient's articles make a good case for neurodegenerative pandemic soon.
I think that's been building for a while which is good news in terms of funnelling money into pd research. There is a lot of stuff going on and that's because it's no longer a condition affecting just a few people
Bydureon, a repurposed Type 2 Diabetes drug is now in third-stage trials in UK for stopping Parkinson’s in its tracks — results expected 2023. Testing — mice, open label, double blind — has been going on for 10 years and it has been positive every time.
scienceofparkinsons.com/201...
I have found some symptom relief (don’t have very bad case) with Tumeric & black pepper (pepper makes it bioavailable) — recommended by a doctor.
According to a very sensitive test, Homeostasis Model Assessment for Insulin Resistance (HOMA-IR), 2/3 of Parkinson’s patients are supposed to be insulin resistant. I read somewhere that IR may be treated with Bydureon (Exanatide) but I can’t now find the link. Just something that might get us one step closer to Bydureon.
scienceofparkinsons.com/201...
cureparkinsons.org.uk/news/...
Repeat: this a re-purposed drug -- it's safety is beyond question. Meantime our brains are melting. We should start a movement to get doctors out of their "indicated" track on this one -- too much is at stake.
PS. I took Bydureon for five years before going into remission on Type 2 Diabetes. Funny if it helped me with both.
Elon Musk has developed an implant using much the same parts as an apple watch. He is testing it for neurological diseases and spine issues. The simple, one hour surgery will be performed by a robot. The battery lasts for a day, and charges at night. Who knows, it may help Parkinson's.
You do talk the most dreadful nonsense.
You might want to research that. It could be of help.
Thank you. Maybe you should completely revise your posts before you post them instead of after they have been replied to
Business decisions have to be made every day. If you were the head of a Medical company manufacturing medication, what would you do?
1. Find a cure for all diseases that kill people, because unless you do, you lose them as potential patients?
2. Treat the symptoms of diseases that don't kill people for as many years as you can eep them alive?
I'm afraid that that is the choice facing all pharmaceutical companies. The stakes are very high in the favour of companies manufacturing mecication for treatments, even if they don't work! THe stakes are even higher if you find a cur!.
I'm afraid that we are a CASH COW for the pharmaceutical industry because it takes many years before people die with Pd and Alzheimer's.
That, very sadly is the answer to your question.
Hi - I am new to this forum and just wanted to agree with others in response to iqbaliqbal’s question regarding the slow pace of developing a disease modifying agent for PD. that there is little incentive in the medical and pharma industry to find a cure for PD. The symptoms of the disease are literally treated for decades using all sorts of pharmaceuticals and supplements. I hate this friggin disease.
Dec 1Covid-19 illness documented (unpublicized Nov 17th)
Jan 10
SARS-CoV-2 virus sequenced
Jan 15
NIH designs mRNA vaccine in collaboration with Modema
Mar 16
Moderna Phase 112 trial begins
May 2
Pfizer/BioNTech Phase 112 trial begins
July 14
Moderna Phase 112 trial published in NEJM
July 27,28
Moderna and Pfizer/BioNTech Phase 3 trial begins
Aug 12
Pfizer/BioNTech Phase 112 published in Nature
October 22,27
Enrollment in both Phase 3 trials complete; >74,000 participants
Nov 9
Pfizer/BioNTech announces interim analysis efficacy > 90%
Nov 16
Moderna announces interim analysis efficacy 94.5%
Nov 18
Pfizer/BioNTech announces 95% efficacy as final result
Nov 20
1st EUA submitted by Pfizer/BioNTech
Nov 27
Distribution of vaccine by UAL charter flights throughout US
Dec 10
FDA External review of Pfizer/BioNTech EUA
Dec 11Phase 1a Vaccination beqins for health care professionals*
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